ABC Therapeutics Occupational Therapy Weblog

Update on OT Practice Act and new regulations re: COTAs and supervision

2012-02-14T17:52:00.005-05:00

Feb.6 letter from Doug Lentivech to the Professional Practice Committee of the NYS Board of Regents re: emergency regulations relating to OT Assistants, OT Students, and Limited Permittees.

Here is the revised language of the regulation that allegedly will not be available to the public until after it is published in the New York State Administrative Register.

This information was sent all over NY State today and was released by an Albany law firm who I assume must represent someone in the know.

I can't state definitively that these are the final versions, but the state or national associations aren't releasing anything and this came from a reputable source so I am going on the assumption that these will be the final regulations.

I encourage OT practitioners to contact the NYS Board for OT if they have questions about these (proposed??/accepted??) regulations. They presumably will be retroactive to today so OTs around the state will want to be aware of new requirements with as much advance notice as possible.

Of particular note is that the State Board for OT values public protection so little that they are removing a provision that stops people with limited permits from practicing when they have failed their certification examination.

The maximum number of COTAs that an OTR can now supervise is 5 FTE. If they are employed less than full time the total number of COTAs can not exceed 10. That means that some employers will need to hire more OTRs because there are many places around the state who are employing COTAs in excess of the current OTR to COTA ratio.

There are new requirements for supervision in general as well as documenting the supervision of COTAs, OT students, and limited permittees that will have a major impact on OTR time.

Finally, there was some deft tap dancing around the statutory language that required COTA students to be supervised by OTRs. The regulations as written seem to allow for COTA students to be supervised by a COTA fieldwork educator but the requirement for OTR supervision of the whole process remains. That places a new wrinkle in requirements for COTA student placements which previously did not always include direct OTR oversight.

Public participation regarding these regulations has been hijacked because they are being proposed as emergency regulations.

When professional decision making is compromised by policy: A study of preschool outcome measures in NY State

2012-02-10T12:51:00.007-05:00

Quality indicators are monitored when public monies are used, such as for Public Law 108-446, the Individuals with Disabilities Education Act (IDEA) 2004. The act mandates that states develop and submit a six year State Performance Plan (SPP) to the government. For each of the quality indicators that states report on there has to be improvement activities and targets. The idea of all this is to drive improved quality within the system

Quality indicator 7 for preschool services requires that a percent of preschool children with IEPs demonstrate improved positive social-emotional skills (including social relationships); acquisition and use of knowledge and skills (including early language/ communication and early literacy); and use of appropriate behaviors to meet their needs. Performance on this indicator is assessed using standardized tests after children have participated in their preschool program.

The SPP requires that exit assessments only need to be conducted for preschool children with disabilities when they stop receiving preschool special education services due to program completion or declassification during the school year in which the school district is required to report exit data on this indicator. Annually, NYS requires a representative sample of one sixth of the school districts in the State to report progress data on this indicator. When a district is not required to report exit assessment data it is common that the district DOES NOT APPROVE requests for exit assessments. Also, terminating availability of declassification services by allowing EVERY child to simply age out of the program also negates the procedural trigger for exit assessment.

The sum total result is that children complete their preschool services and unless the school happens to be mandated for data sampling in that given year there is a really good chance that there will be no exit assessments. When there are no exit assessments that means that the CSE has no hard data to consider - and eligibility for that system is constricted. Also, parents are left in the dark not knowing the actual status of their child's progress as measured by full assessment.

Basic standards of practice would dictate that a therapist would want to have some kind of reasonable assessment data to make determinations about progress made, recommendations for future eligibility, and for feedback to families. Basic standards of practice are compromised by these policies.

School districts blatantly disregard basic standards of practice in favor of ONLY following the bare reporting requirements of the State Performance Plan. In the mail today I received a notice that read as follows:

The above mentioned memo advised you to request full evaluations for students you are considering for declassification. However, because we are not reporting on State Indicator 7 this year, you do not need to request a full evaluation for students you are declassifying.

What happens on the street is that very few children are referred directly to CSE - unless it is VERY obvious that they would have eligibility due to notable diagnosis (cerebral palsy, autism, etc.). In truth, very few children have such severe diagnoses and most kids who receive special education services have 'softer' developmental delays like learning disabilities, attention deficit disorder, or other problems that are often relatively less severe. This causes most children to 'age out' of special education, never receive a full exit assessment (unless the state happens to be looking for data that year!), and they are not again picked up on the elementary school side until they are failing in first or second grade.

I can't comment on the heart of the people who write memos indicating that there shouldn't be exit assessments since the state isn't looking. However, I can state that it is odd to dictate your practice based only on the likelihood of whether or not someone is watching your conduct at any given time.

One would hope for a more universal standard of 'appropriate practice.' In my opinion, any preschool child who has been receiving services should receive periodic reassessments to measure progress, particularly if they are at the terminal point of their preschool participation.

How can we recommend declassification services, and even if they were approved - how can anyone know what still needs to be worked on unless we have good assessment going on?

How did we get to this point? There are groups lobbying for even less oversight of the 'declassification' process for preschoolers. Professionals working in school systems need to understand that pressures for 'reform' are driven primarily by municipalities and counties who don't have the funds to support programs any longer and also by special interest groups representing school business officials who struggle with the challenge of meeting standards with a shrinking resource pool. When you hear the words 'mandate relief' you have to understand that this has absolutely NOTHING to do with what is professionally/educationally appropriate but it has EVERYTHING to do with what districts can afford.

I never thought that outcome assessment could be considered a radical request - apparently it is if the State isn't looking for data that year. But here we are.

Practitioners around NY State begin learning about EI reform proposals

2012-02-03T22:08:00.004-05:00

Earlier this week I noticed a large uptick in Google searches regarding early intervention that were landing on this blog so I started wondering what was going on. Turns out that there was a NYS Association of Counties meeting this week and the Department of Health gave a powerpoint presentation about the Governor's proposal. Copies of the powerpoint started to make their way around the State - and that got people doing some Internet searches for more information. Here is a link to the presentation for those who have not been able to see it yet.

The powerpoint doesn't offer information that is materially different than what is already listed in the proposed budget but it is in a more readable format.

The largest issues proposed include:
1. Providers will be approved through the Department of Health and won't have contracts with local municipalities.
2. There must be an arms length relationship between service coordinators, evaluators, and service providers.
3. Providers will be required to establish and maintain contracts or agreements with a sufficient number of insurers, including Medicaid and CHP.
4. Providers will have to use the State's Fiscal Agent to bill third party payors.
5. All of this will be achieved by a mandate on insurance companies requiring them to coordinate through the State Fiscal Agent to pay for EI services.

Details that are still a little unclear include how the rate will be negotiated. Currently, there is no alignment between EI rates paid by municipalities, rates paid by insurance companies, and the Medicaid rates. It is unclear whether or not the rates will change based on the information released so far. The current plan calls for providers to continue providing services whether or not they have been reimbursed - so there will need to be some clarity so providers understand the rule systems they are being asked to operate under for reimbursement.

It is likely that this will drive some providers out of the system and that will likely create delays in service provision. That means that private therapies, at least for families that have those resources, will likely replace the EI system as the de facto methodology for children receiving services. It is another form of indirect cost sharing, and is probably intentional.

Stay tuned for ongoing analysis.

'Non Traditional Fieldwork' runs face first into proposed New York State regulations

2012-01-29T08:05:00.007-05:00

My sensitivity for the challenges of being an Academic Fieldwork Coordinator runs quite deep; I held that position at a college for three years and experienced the difficulty with finding student placements. There never seems to be enough fieldwork placements, there are challenges with finding places that will provide a quality experience for the student, and although there have been efforts to incentivize practitioners to take students that does not overcome the practical obstacles.

The repeating theme that the occupational therapy profession is not yet grasping is that there has to be some kind of understanding that services provided by students are not the same as services that are provided by licensed professionals. This has been a recurring theme for Medicare reimbursement of services provided by students. Fieldwork educators are very familiar with AOTA's efforts to establish clarity in these rules.

There is a parallel pushback against allowing student provided services to be reimbursed in the Medicaid system. In NY State there are restrictive rules about OT students providing Medicaid services to children. This has a large impact on practitioners willingness to accept students.

Large systems like Medicare and Medicaid are obviously motivated by creating high standards that promote public trust. If public dollars are going to pay for skilled services - then the services need to be skilled. This is understandable.

Now we are seeing new legislative perspective on this issue. While NY State tightens up regulation of OTA practice this has opened up the issue of student supervision as well. Current proposed regulations are getting much more restrictive for students - and now it is being proposed that OTA students can only be supervised by OTs and not OTAs. Furthermore, the degree of supervision that is being proposed in NY for a person who has a limited permit is more restrictive than what is generally being practiced for OT students - and there is no logic in the position that any student requires LESS supervision than someone with a limited permit. This means that if the current proposals for supervision of people who have limited permits is applied downward to students - there are going to be huge problems with models of 'non-traditional' fieldwork education. Also, removing OTAs from the equation and not allowing them to supervise OTA students will place a tremendous pressure on OTA fieldwork opportunities.

The pickle that NY State is in gets even worse - part of the proposed regs allows 'physicians' (which are not statutorily defined) to provide supervision of OTAs. This is a rather large concern because it might remove OTs from the loop and encourage optometrists or foot doctors (much less regular MDs) to hire OTAs in their offices, provide 'supervision,' and begin billing for OT services. Of course most people oppose this, but the State Board of OT comeback is 'you can't be AGAINST physician supervision and be FOR supervision by non-OTs for 'non traditional' fieldwork at the same time.

The concept of 'non traditional fieldwork' is interesting but we have not had enough discussion that relates to whether or not it 'constitutes OT' or is 'just something an OT can do with their education.' These are important legal distinctions. This also raises the issue of whether or not these 'non traditional' sites provide appropriate preparedness for taking the certification examination and practicing OT. Apparently, if we don't tackle this issue ourselves we will see regulatory boards step in like in NY.

My very strong suggestion to AOTA and ACOTE is to PUT ON THE BRAKES when talking about 'non traditional fieldwork.' The notion that "one-to-one supervision, a hallmark of traditional placement models, is replaced by alternative supervision practices such as collaborative learning or distance supervision" (Hanson, 2011) is starting to look like an idea that might have some pretty big legal problems associated with it in some contexts.

The current crisis in NY should be examined and studied CLOSELY by all other states. Opening up a practice act is a can of worms, and now we are seeing some major unintended consequences. There were issues to address in NY but this is an amazing study in why it is important to open up ONE ISSUE AT A TIME - or at least to have enough eyes on the ball when multiple issues are opened that unintended consequences are held to a minimum.

Reference:
(links in text)

Hanson, D. (2011, Nov.14) Expanding practice borders: The value of nontraditional fieldwork models, OT Practice, pp.6-8.

Are three hour autism training courses helpful?

2012-01-26T14:22:00.004-05:00

I received an email today from an agency that provides three hour training courses on autism required by the NY State Office of Teaching Initiatives (OTI) for all candidates seeking a Special Education Classroom Teaching certificate. The three hour course is popular because it is frequently used by CSEs as a training mechanism for educational staff who are working with children who have an autism spectrum diagnosis.

I think the intent here is good - many professionals and paraprofessionals who work in special education may not have a lot of information about specific conditions and presumably anything that provides some information might be helpful.

Parents who come to my office often verbalize frustration that the aides or classroom staff in schools are not adequately prepared to understand their children's needs. I assume that this dissatisfaction is what drives families to private practitioners in some cases.

I have an interest in certification so I got to wondering what this certificate actually provided or promoted. If it was effective, why do so many parents still talk about how the schools are not properly educated about autism? These seem to be legitimate questions.

I tried to find out more about the autism certificate course and quickly ran into dead ends. I scanned the OTI website and couldn't find any information about outcome assessments of this educational requirement. I looked for information about how the curriculum was developed and that wasn't available either. I called a local colleague who teaches the course and that person was not aware of any outcome or effectiveness studies that have been done. I tried to call OTI but ended up in a circular pattern of button pushing. According to the phone recordings, most OTI staff are dedicated to reviewing applications and not dedicated to answering the phones.

So I am left wondering: is that autism training certificate program effective in any way? If there are studies done on the effectiveness of the requirement where are they? I can rather easily find reams of data on three hour defensive driving courses (interestingly, they are absolutely ineffective) but I can't find any data on effectiveness of three hour autism courses.

I was twittering with another colleague today about the Touch television program that assigns prophetic powers to a child who may have autism. My concern is that the many hours that this show will be aired will fill people's heads with all kinds of ideas regarding the abilities of people who have autism. I know - it is just fiction - but not all minds are discerning. Will the three hour course overcome the powerful and entertaining but incorrect messages contained in a slickly produced television drama?

Or will this television show have a deeper influence on the development and perpetuity of an unhelpful cultural archetype that reinforces the 'autism as special power' myth. In recent years we have had 'Rain Man' and the 'Curious Incident' book and 'The Boy who Could Fly' and many others.

Does the myth matter? I am not sure. It would be nice to know if these three hour training courses met any real need though, or if we need to do something better.

Understanding upcoming changes to early intervention and preschool services, Part 1

2012-01-18T12:35:00.004-05:00

Early intervention and preschool services to children who have disabilities will be scrutinized heavily in the upcoming year and many reforms are being discussed. This summary is a general outline of some of the salient drivers that are impacting reform efforts in New York State.

I strongly recommend starting your reading with the Reforming Mandates, Reducing Costs report that was written by the New York State Association of Counties. This report was submitted to the Medicaid Redesign Team last year to provide input about the unsustainable increasing costs of these programs.

Mandated Medicaid costs are crippling County budgets, and have been for many years. Most recently the State entered into a settlement agreement with the Federal Government often referred to as the State Plan Amendment. This settlement is the contract between New York State and Federal government whereby the State agrees to administer the Medicaid program in accordance with Federal law and policy. This agreement imposed backdated requirements that made it virtually impossible for Counties to receive payments for services that should have been reimbursable as they were compliant with rules in place at the time. This placed a very large strain on this particular component of Medicaid reimbursements to Counties.

Recently enacted property tax caps complicate the situation. You don't need to be an accountant or the County Comptroller to understand that rising costs, lack of reimbursements, and constricted income all spell a recipe for disaster. In short, Counties are being crippled by these programs.

County budgeting staff are at their wits end, and that is why you see proposals from Counties like removing them from the fiscal, contractual and programmatic responsibilities of the program, limiting eligibility to individuals that have greater delays in development, requiring some family financial participation based on income, increasing the County role in developing and writing Individual Education Plans, centralizing organization to the County as opposed to the district level, requiring parent participation for non-working parents, and eliminating contracting/fee for service arrangements because of the inherent conflict of interest with the current system. All of these and more recommendations were made to the Medicaid Redesign Team.

Some of these recommendations are more reasonable than others, but the point in reading this report is that it will help people understand the desperation of Counties.

Providers and parents may not understand these dynamics as well as they need too - I frequently hear calls to contact the NYS Department of Health, or to lobby the school districts, or to make noise in general to their legislators about how these services can not be touched. All of these call to action are potentially misguided. The ability to understand the problem starts at the level of the Counties and their Medicaid budgets and an analysis of the unsustainable growth of these programs and the inability to meet these costs within the current and expected fiscal environments.

You will not help this situation by yelling at your CPSE Chairperson. You have to start with your County legislators and understanding the broad dilemma that they are in.

Readers here are being informed that Governor Cuomo HEARS the Counties and UNDERSTANDS the dilemma. He released his Executive Budget yesterday that calls for some dramatic reform to how these systems are administrated. This WILL have a large impact on service eligibility and service provision - it WILL NOT just be a switch to billing a new entity.

Future posts here will cover the inability to NY State to effectively administrate EI billing, inability to recoup revenues, and inability to effective coordinate via the well-intentioned but very broken NYEIS system, the Counties' calls to the Governor to act on these problems, the rock and hard place of Counties with respect to the property tax cap, and what the Governor's proposals will mean for actual service provision.

This will also include a deep exploration of our own social and cultural values. The large question to answer is 'What is society's responsibilities for these programs.' It will be an interesting ride for the next couple of years as all this plays out.

Stay tuned for ongoing analysis.

Tear down the wall: Broken models of mental health service delivery

2012-01-03T17:52:00.004-05:00

I have a longstanding interest in Systems and their impact on our ability to care for people. In 2005 (I can't believe I have been blogging that long) I wrote a blog entry about foster care policy and its impact on occupational therapy.

I try not to get outraged on a daily basis because it makes it a little challenging to maintain focus. If you think about foster care too much though it is hard not to get a little upset.

These Systems are populated by well intentioned and kind people who have to do yeoman's work to make the System run. The problem is not with the well intentioned and kind people who work within these Systems - the problem is with the System creators who have set up a structure that in my opinion fails to meet the needs of the people being served.

That's not so good.

Mental health care Systems are notoriously poorly designed; we have systemic problems like homelessness and poor care coordination and uneven access to care. The Systems are so poor that the American Academy of Pediatrics recommended a model of school-based mental health service delivery. I like the concept, but I am noticing more and more that school systems are ill-equipped to handle mental health needs of children.

The primary point of difficulty that schools have with this kind of service delivery is in the MODEL that is used for defining problems. As an example, an Intake History that I read recently started off describing all of the problem behaviors of a child including lying, cheating, stealing, profanity, attention difficulties, poor ADL compliance, and aggression. Somewhere in the middle of the second page of the Intake was a section with diagnostic information, and it was left blank because the information was not available at the time the Intake was completed. Digging through the educational file, I eventually learned the following:

1. Diagnosis of Dysthymic Disorder, early onset
2. Parental abandonment
3. Possible sexual abuse
4. Multiple foster home placements

This child's story is sordid and would bring most people to tears.

I am stuck because I am trying to understand how we have created a System where the well intentioned people have no MODEL for understanding the nature of the problem. They are just educators, or perhaps people with a B.S. in psychology or a generic human services degree - and they start off with defining the problem as lying, cheating, stealing, etc. etc.

How does that happen?

The System is populated with clinical social workers and an occasional consulting psychiatrist and even an occasional occupational therapist - but the NON-CLINICAL MODEL that is perpetuated causes people to start identifying the problem as the presenting behavior, or by how the child is functioning in the context of the school. Somewhere along the line we have forgotten that this is a child whose parents have abandoned her who has been to multiple foster home placements and repeatedly raped.

If these facts are true, how horrible is it that we have created a System that places the PROBLEM on the middle of the second page (where it was unceremoniously left blank) and only ambitious people who dig through old records are able to find a psychiatric report that lists the REAL PROBLEM??!

To make matters worse we then relegate the care of these abused children to people who do not have enough input and guidance from mental health clinicians. I really don't know where all the mental health clinicians are. I can speak for my field of occupational therapy - only 2% of OT practitioners even work in mental health settings. Occupational therapy has abandoned mental health and moved on to other pastures. Only now is our professional association starting to make some much needed moves to re-insert the profession back into the mental health care Systems.

I suspect that this issue of abandonment of mental health is not unique to OT. Every professional who still has involvement in these Systems has a unique opportunity to educate the Systems on the value of using a more clinical model for the purpose of FRAMING PROBLEMS.

Eventually these Systems need to be absolutely torn down and replaced. They are broken and we need to stop pouring money and misplaced effort on propping up failure.

Unless we are intent on continuing to fail.

2011 Pushback against Fad OT Interventions

2011-12-31T08:20:00.004-05:00

Another significant theme in my 2011 forum conversations was pushing back against fad OT interventions. I think that it is an important enough topic to be re-posted here.

Some of the fad and pseudoscientific interventions that I discussed in forums this year included therapeutic listening and other auditory interventions, deep pressure protocols (brushing programs), weighted vests, and Brain Gym.

Fad interventions were relatively common in health care until research came along - and now we have mechanisms to test and see if people's 'ideas' about something hold up to any scrutiny.

One posting asked about the validity of 'astronaut training' which is something that I get phone calls about in my private practice. I tried running database searches on 'astronaut training' and 'vestibular-visual protocol' and several other iterations that I hoped would capture this protocol and as usual for this kind of fad intervention I was unable to find any research.

I have practiced OT for 24 years. I can tell you that a lot of families contact me and ask me about whether or not I will provide Astronaut Training for their child. I tell them that it is experimental and that there has not been any research to support the specific protocol that they usually found out about through web sites or youtube. I am not going to link to those Internet sources because I don't see the value in spreading information about fad interventions. I would rather that people search the terms and come to the blog and see an opinion about pseudoscience.

Over the course of the last 20 years there have been several fad interventions in pediatric OT. These interventions are generally pseudo scientific in that they reference scientific-sounding concepts, they are promoted by "experts," they require "clinical training programs" that people need to attend so they understand how to do the protocol properly, and they have a "feel-good" quality to them that engenders hope in parents. In the end, they also have an absolute lack of supporting research.

An classic example of a fad or pseudoscientific intervention in OT is the so-called 'Deep pressure protocol.' I remember attending a conference in 1989 (22 years ago now!) and at that time the presenters were promising that there was exciting research available that would support their protocol. That research never materialized and now you can't even find a reference to that protocol in OT pediatric text books. Pseudoscientific interventions are tough to beat back into the bushes though - and even though we have 20 years of no evidence and no current references in major OT textbooks it still remains an entrenched part of what I call 'mythological' OT practice.

Pseudoscientific interventions are so resilient because they may in part have some concepts that are valid. For example, there may be something valid about how some deep pressure stimulation is calming to some people in some situations. Similarly, there may be something valid about trial practice and training for postural responses and visual-auditory orienting - but neither of these should be construed as meaning that you have to use the Fad Intervention therapy brush or you have to purchase the Fad Intervention CDs and you have to do the Fad Intervention protocol exactly the way the Fad Intervention Therapy pushers proselytize. Most importantly, you have to ask if you should be providing the Fad Intervention Therapy to a child and family unless you tell them that it is experimental and there is no supporting research.

It is probably much more important to look for supporting research, make ethical judgement about how you have to inform families about experimental procedures, and don't fall into the trap of perpetuating 'mythological' occupational therapy practice.

With persistence and continued conversation I am confident that we can advance the sophistication of how we bring ideas to a research forum without first setting our ideas loose into the marketplace where people are profiteering off of the hopes of parents and the lack of evidence-based proclivities by some forces within our own profession.

The 2011 Social Justice Debates in occupational therapy

2011-12-31T07:20:00.005-05:00

I wondered this morning how much writing I have done on various OT message boards and I started thinking that an awful lot of my opinions are probably documented all over the Internet. I visited the forums on the AOTA website and found the equivalent of over 40 single spaced pages of my writing! Then I thought it might be interesting to see what motivated me to post on professional forums this year. Here is a summary of one interesting forum conversation:

The Social Justice Debates

Early this year there was a motion to rescind part of newly adopted AOTA ethics statements; the concern was that they unnecessarily referenced social justice concepts and that the existing ethics statements already covered that conceptual material and did so without politically charged terms like 'social justice.' The new ethics documents includes:

SOCIAL JUSTICE
Principle 4. Occupational therapy personnel shall provide services in a fair and equitable manner.

Social justice, also called distributive justice, refers to the fair, equitable, and appropriate distribution of resources. The principle of social justice refers broadly to the distribution of all rights and responsibilities in society (Beauchamp & Childress, 2009). In general, the principle of social justice supports the concept of achieving justice in every aspect of society rather than merely the administration of law. The general idea is that individuals and groups should receive fair treatment and an impartial share of the benefits of society. Occupational therapy personnel have a vested interest in addressing unjust inequities that limit opportunities for participation in society (Braveman & Bass-Haugen, 2009). While opinions differ regarding the most ethical approach to addressing distribution of health care resources and reduction of health disparities, the issue of social justice continues to focus on limiting the impact of social inequality on health outcomes.

Occupational therapy personnel shall
A. Uphold the profession’s altruistic responsibilities to help ensure the common good.
B. Take responsibility for educating the public and society about the value of occupational therapy services in promoting health and wellness and reducing the impact of disease and disability.
C. Make every effort to promote activities that benefit the health status of the community.
D. Advocate for just and fair treatment for all patients, clients, employees, and colleagues, and encourage employers and colleagues to abide by the highest standards of social justice and the ethical standards set forth by the occupational therapy profession.
E. Make efforts to advocate for recipients of occupational therapy services to obtain needed services through available means.
F. Provide services that reflect an understanding of how occupational therapy service delivery can be affected by factors such as economic status, age, ethnicity, race, geography, disability, marital status, sexual orientation, gender, gender identity, religion, culture, and political affiliation.
G. Consider offering pro bono (“for the good”) or reduced-fee occupational therapy services for selected individuals when consistent with guidelines of the employer, third-party payer, and/or government agency.

My own concern was with the statements "to abide by the highest standards of social justice" and "provide services that reflect and understanding of how OT service delivery can be affected by factors such as..." Here the politically co-opted definition and political twist that is taken with the term 'social justice' was challenging because of the associated statements about distributive justice which is politically charged. Additionally, there seems to be a suggestion that there is de facto impact on service delivery because of certain issues like age, ethnicity, race, etc., and many people object to that assertion. There is no doubt that prejudices exist, but it is not correct to state that there is de facto impact.

My concern was also related to how 'social justice' was being defined in the current American political context. I tried to compare worldwide Catholic social justice definitions to American social justice definitions. Context and degree seem to be overarching factors when it comes to definitions of social justice - for example, social justice from the perspective of a person in a developing country must be very different than social justice in the United States (which has incredible wealth and where even those who are very poor have their basic needs met).

Also, a core concept of Catholic social justice is in how it is practiced - no bigger than is necessary and no smaller than is appropriate.

Anyway, what I am saying is that I understand the Catholic position of social justice because it is a world-wide religion and the concept is being applied to a very broad spectrum of human existence.

That is all very different than the way that the term is being used in the United States as a redistributive economic policy.

I don't think that the OT professions needs to avoid issues that are politically charged, but it does not seem unreasonable to have a core value of inclusiveness so that we are not disenfranchising our membership - and there were some people who were uncomfortable with including this language in the ethics documents. I don't believe it is unfair to ask the appropriate contextual question of ''What does social justice really mean in the AOTA documents' and if it is such a core concept to our ethics - then why is it just appearing now?

This really was not a new concept for people who read here - I covered this material in depth previously.

The larger issue I was driving at in the conversations was "what constitutes OT practice and how do ethics aspirations suggest us into practice areas or into practice interventions that are beyond our mainstream." In many ways that makes them beyond pragmatic use to many practitioners.

I think that people can use their OT skills in many ways - but that does not necessarily make the interventions occupational therapy - even though some people are calling it that or perhaps want it to be.

I have no objection to giving recognition or praise to efforts that further people's health and participation - even when those efforts are informed by occupational science and are not falling within the mainstream of occupational therapy practice.

My concern is that sometimes it seems like we spend a lot of time in this profession playing in the stratosphere. Lofty ideals are fun, but the atmosphere is pretty thin - and sometimes it is nice to get your feet planted back on the ground again.

I believe that we will serve our profession best if our ideals and ethical aspirations have application to the everyday concerns of practitioners. If our ideals and ethics only help us populate an academic playground to see how many different ways we can apply our concepts then I fear that we will have created a great academic discipline - but one that has very little traction in everyday practice.

As a bottom line concern, AOTA ethics documents are included in some state license laws. That means that failure to abide by generic aspirational and potentially vague language about social justice in ethics documents might cause someone to be in jeopardy with their state license. That's not so good.

I did not believe that there was a need to include ambiguous social justice terminology to maintain our consistency of belief that people who have disabilities should receive services. The proposed motion to remove the politically charged terminology rather clearly outlined that nothing is lost by removing the social justice terminology, and instead the objective is to remove ambiguity that is associated with the term.

I greatly appreciated the distinctions that were argued between political social justice and ethical social justice in those forums - but the fact remains that based on a reading of the current ethics statement and based on a reading of our literature that there has not been such a distinction made between these different iterations of social justice. In fact - the two have been blurred throughout all the conversations as well as in the literature.

It was an interesting debate. The Motion to remove the language failed. So now I will continue the 'social justice watch' to see if any of this ended up having any notable and pragmatic impact on practice.

"It's going to be very, very exciting." Not.

2011-12-05T19:07:00.005-05:00

I don't mince words, mostly because I lack time to do so and secondarily because I lack interest in political correctness. Let's talk straight about the Patient Protection and Affordable Care Act of 2010.

For some background and additional reading on the debacles that occur when government intrudes into health care decision making click on the 'health insurance' topics in this blog.

At the 2010 Legislative Conference for National Association of Counties, Nancy Pelosi made her now famous remarks

You've heard about the controversies within the bill, the process about the bill, one or the other. But I don't know if you have heard that it is legislation for the future, not just about health care for America, but about a healthier America, where preventive care is not something that you have to pay a deductible for or out of pocket. Prevention, prevention, prevention -- it's about diet, not diabetes. It's going to be very, very exciting. But we have to pass the bill so that you can find out what is in it, away from the fog of the controversy.

Well we passed the bill and still nearly two years later we are waiting to find out what is in it.

The November 14th edition of OT Practice included an article by Jennifer Hitchon who is AOTA's regulatory counsel. Her article neatly summarizes the recently released Institute of Medicine report Essential Health Benefits: Balancing Coverage and Cost. The purpose of the IOM report was to survey stakeholders (aka insurance companies) about what products and services were deemed 'essential.' In other words - what is the bare minimum that these insurance companies are covering?

Now this is where I start to scratch my head a little - because the government determines that we need a new law to replace/supplement the 'evil profiteering health insurance companies' with government sponsored 'exchanges.' So, the government commissions the IOM to study the issue and the results of the study will go to the policy wonks who write the actual regulations that dictate what is in it. So then the IOM goes and asks the 'evil profiteering insurance companies' for their input so they can tell the policy wonks how to write better regulations than what is currently being done... oh... um.... hm.......

The IOM is non-governmental and advisory to the government and normally the IOM is a source to have faith in - but why survey/invite the fox to the hen house to determine what benefits should be considered 'essential?' I understand that the charge to the IOM was to come up with some package that was 'comparable' to what is being offered by most small business insurance plans - but how is the Affordable Care Act going to improve anything if all we do is base decisions on the cheapest available plans being offered by some small company that is already being squeezed by costs and is now choosing bargain basement health plans for its employees.

The lack of percipience into this issue is stunning, even for a government.

For fun I searched the IOM report for mentions of occupational therapy - you can view the mentions here. Most of the mentions relate to various inclusion/exclusion criteria of selected insurance plans.

The study includes some interesting statements that essential benefits should be medically oriented and not social or educational - which has rather large potential impact on all of pediatric occupational therapy practice. This same issue is being fought out state by state regarding insurance coverage for autism interventions and it will be interesting to see what the federal government does with the issue. I am curious how there will be reconciliation between exchange mandates and statutory requirements that have been written into state law about this coverage.

There are other notable exclusion points in the document related to some chronic conditions like intellectual disabilities and low vision. There is enough controversy for all. This doesn't mean that these will be automatically removed from 'essential' coverage determinations - but this all represents writing on the wall that people need to attend to.

Occupational therapists need to be watching this issue closely. Actually, the entire American public needs to watch this closely - but the complexities are beyond what many people have time or energy to follow, track, and decipher.

I encourage professional associations like AOTA to continue publishing about this issue as events unfold. However, we need straight analysis and not generic 'we will provide formal comments when the opportunity arises.' Practitioners and the public need to know the following:

The government may plan to model their exchange off of the cheapest possible plan that is offered by a small business.
Habilitation services could be on the proverbial chopping block, particularly if they can be labeled as 'educational' or 'social'
The plan may cover things like if your eyeballs fall out of your head, because that is a medical problem. However, if you need therapy or equipment to help you function you might be out of luck because that would be a personal problem and not a medical problem.

Many professional groups (MDs, etc.) are getting out IN FRONT of these issues by publishing position papers about what needs to be covered and why. The OT community needs to do more than simply respond during the comment period. AOTA needs to publish similar position papers about including a wide range of OT services in the act and increase visibility and lobbying about these issues. Practitioners have to start by educating themselves on what they are actually facing.

For the record, I would not characterize this as very exciting. I think it may be the largest boondoggle ever perpetrated on the American public.

The role of the occupational therapist in carpet cleaning

2011-11-28T18:10:00.004-05:00

Jimmy was especially active and his mom was having a really difficult time keeping him occupied while she filled out his intake paperwork. His mom was a little frazzled as Jimmy darted around the room, jumped onto the chairs, pulled on the curtains (pulling them off the rod!), and banged on the windows. I intervened at the window banging for safety reasons and as I gently redirected Jimmy he lunged for his mom's coffee, and with a spray of cappuchino across the carpeted waiting room he finally paused.

"Oops," he said, as his mom gave him The Stare. Jimmy froze.

Mom froze too, and after surveying the mess she excused herself to the bathroom. I stayed with Jimmy who suddenly realized he was supposed to be sitting quietly.

Mom returned with some paper towels. The unfinished paperwork sat on the chair, and she cried as she dabbed at the rug. Jimmy knew enough to stare straight ahead at the toy on the child sized table and play quietly.

His mom was upset about the rug and worried that it would leave a stain. "I just don't know what to do!" she said between sobs. "I can't even take him somewhere to get help without it being a disaster."

I really didn't care about the rug because it can be cleaned. Also, cappuchino is relatively benign when I think about all the possible things that can get spilled onto a floor. "It's really ok," I said, attempting to reassure Jimmy's mom. She couldn't hear me and asked for some cleanser.

Soap is an emulsifier because it can take a substance like cappuchino and disperse it into another liquid, like water. Soap micelles have long hydrocarbon chains that help isolate oils or grime so they can be 'cleaned' or 'removed.'

I was thinking that maybe the paperwork was more important than the cleanser and that maybe for the short term the water would be enough to provide a diluted mixture to blot up and reabsorb the coffee into the paper towels. That wasn't enough for the mom though. She wanted some cleanser.

I watched the mom scrub and scrub at the floor, and I figured that is what she did with Jimmy too. I imagined her taking Jimmy against a washboard and scrubbing with all of her might. I bet she tried everything she could so that she could remove the behavioral difficulties that interfered with his participation in school.

You can scrub all day sometimes, and it just isn't enough.

Foaming agents are added to detergent products because somewhere along the line of history people started associating soap bubbles with ACTION. The bubbles might help some, but they aren't really required for the emulsification process. That's my very basic understanding of the chemistry of how this stuff works anyway. The mom wanted ACTION. She wanted to see her scrubbing effort make bubbles. Bubbles meant the rug was getting cleaned.

Maybe bubbles would mean that Jimmy's behavior could improve too, if only we were scrubbing hard enough in the right direction and with the right effort.

I found some rug cleaner and dabbed it into the carpet as I knelt next to mom and handed her a scrub brush. I grabbed a second brush and went to work on the carpet.

"I bet we can get that out no problem," I said hopefully as I scrubbed and scrubbed. Jimmy's mom smiled.

Thoughts about use of weighted vests to promote attending behaviors in children

2011-11-18T12:12:00.004-05:00

Please reference an entry earlier this year about seat cushions.

I am essentially re-posting that earlier entry but replacing 'seat cushions' with 'weighted vests.' Let me start this post with congratulations for Amy Collins and Rosalind J. Dworkin who wrote an excellent article in this month's American Journal of Occupational Therapy.

Here comes some mildly edited cutting and pasting from the previous entry - and I will take the liberty of copying my own writing because the issue is identical and this entry will likely be searched separately than the seat cushion entry!

I encourage everyone to open up the current American Journal of Occupational Therapy and read 'Pilot Study of the Effectiveness of Weighted Vests.' This is a fantastic article that looks at the issue of whether or not weighted vests were effective at promoting attending behavior.

I think this is a fantastic study because it take a very common OT intervention and puts it to the test. For many years OTs have been dispensing weighted vests to children in classrooms based on the thought that the vests provided calming/organizing sensory stimulation that would promote attention . This has been done for so many years in so many settings that it becomes a common request from teachers who don't know what to do with children who have attending difficulties. How many OTs hear the request "Can we try to see if a weighted vest will help?"

We have precious little evidence that weighted vests do anything at all for children - and the lack of evidence is reflected in the fact that this intervention is barely mentioned in some common pediatric occupational therapy texts. However, given the formulaic and mythical popularity of the intervention you might think there would be more supporting research!! Now we have a series of recently published articles that when considered in total indicate very little evidence for using weighted vests.

For additional background reading please also reference Hodgetts, Magill-Evans, & Misiaszek (2011); Leew, Stein, & Gibbard (2010); and Stephenson & Carter (2009).

In the AJOT study the authors Collins and Dworkin used an intervention and control group in a blinded and randomly assigned design to measure the impact of wearing a weighted vest on attending behaviors. They used a clever model of removing the weights from the vests in the control group and inserting insignificantly weighted Styrofoam that replicated the appearance of the weighted vests for the data collectors.

The authors were unable to find evidence that weighted vests had any effectiveness for improving attending behaviors. The study was limited because of small sample size and a need for ensuring consistency in coding/recording methods. These limitations are significant enough to warrant the label of 'pilot study.'

The findings of this pilot study are consistent with previous studies and although there are some limitations in the research design there are some other strengths of the study and its confirmation of previous studies is compelling.

My analysis of this is that we should probably make attempts to confirm this with a more tightly controlled design and a larger sample, but based on these results and the consistency of these results with previous studies there is very little support for using weighted vests with the expressed purpose of trying to improve attending behaviors.

References:

Collins, A. & Dworkin, R.J. (2011). Pilot Study of the Effectiveness of Weighted Vests. American Journal of Occupational Therapy, 65(6), 688-694.

Hodgetts, S., Magill-Evans, J., & Misiaszek, J. (2011). Weighted vests, stereotyped behaviors and arousal in children with autism. Journal Of Autism And Developmental Disorders, 41(6), 805-814.

Leew, S., Stein, N., & Gibbard, W. (2010). Weighted vests' effect on social attention for toddlers with Autism Spectrum Disorders. Canadian Journal Of Occupational Therapy. Revue Canadienne D'ergothérapie, 77(2), 113-124.

Stephenson, J., & Carter, M. (2009). The use of weighted vests with children with autism spectrum disorders and other disabilities. Journal Of Autism And Developmental Disorders, 39(1), 105-114.

The end product associated with a decided lack of true productivity

2011-10-26T11:54:00.007-04:00

We have a lion in my office that was left by a child several years ago. Here is his picture:

I placed him on my cable modem in plain view of everyone who came into the office hoping that someone would claim him. No one ever did, and I felt sad about it because he is a Webkinz and they were rather popular for a while and I am sure that some child was very happy at one time to have this toy. Anyway, I leave him on top of my cable modem just in case his owner ever makes a claim. He is our office mascot, and I have come to enjoy his company every day.

Today I was cleaning and organizing because I couldn't settle myself into documentation. I found a bunch of stray toys. I found the following:

1. a yellow clothespin that goes to a full set
2. an orange sheep that is matched to a full set of parent/baby animals
3. a green peg that goes to a pegboard activity
4. blue and yellow blocks that are part of a construction set
5. a peg from the BOT-2 (a motor test)
6. scissors
7. an ant from Ants in the Pants
8. the letter A from a wooden puzzle
9. a lion that goes with a set of jungle animals
10. an orange pencil gripper
11. the letter P that goes to a bead stringing set
12. a small red lion that goes to Mastermind Jr.
13. a yellow triangle that goes to a parquetry set

Here is the collection:

Undoubtedly, parents are familiar with the phenomenon of stray pieces of toys and games being lost or misplaced. It happens here too and periodically I round everything up and try to return toys to their proper home.

I decided to take a more proactive approach and create a temporary 'home' for all stray pieces and parts. Here is the picture:

I think I want to keep it in a central location, maybe near the lion. It makes sense to me.

Product Review: The PenAgain

2011-10-19T17:28:00.008-04:00

I was recently contacted by Baumgartens who sent several PenAgain products to my office and asked if I would write a review on my blog. I told the company that I only provide unvarnished reviews and I don't accept any compensation for my reviews - and since they agreed to those terms I was willing to take a look at their products.

My first impression when I saw these pens and pencils was "So, how exactly are you supposed to hold the PenAgain?"

The product doesn't come with any specific instructions so I looked at the packaging to see if that offered any hints. The picture on the package seems to show a person holding the pen in full pronation of the forearm so that there is very little to no ulnar contact with the writing surface. Use of the PenAgain in this position is supported by a few YouTube videos as well - although I don't know if the person who made these how-to videos has any relationship to the manufacturer. The idea of full pronation and the weight of the hand as the source of pressure for writing is not necessarily new. OTs might be familiar with the 'writing bird' product that accomplishes this type of function.

The problem with full pronation and hand weighting is that it does not allow a clear visual of what is actually being written - and often contributes to spacing and accuracy problems. I tried using the PenAgain in this fully pronated position with decreased ulnar contact and I thought it was rather awkward. I don't recommend using the product in this position for people who have the skill to use a more typical forearm position. I suppose that it is equivalently helpful as the 'writing bird' though for people who lack precision grasp or supination.

Then I switched to a more traditional supinated position of my forearm and relatively full ulnar contact with the writing surface, which is generally the way the forearm and wrist would be positioned during a writing task. When in this position I found that the lines and forms of the PenAgain were ergonomically comfortable but the tactile stimulation against the volar surface of the MP joint was very unfamiliar. Personally, my writing was less legible with the PenAgain - probably due to the fact that I have firmly established tactile-sensory expectations of what it is supposed to feel like to write. Altered sensory input has an obvious impact on associated motor accuracy - so there would likely be a learning curve while a person acclimated to the different sensory input of the PenAgain. Most of the kids that I tried the products with said the exact same things: first was "Wow, that's cool!" and then "Wow, that feels weird!"

This all leads to the larger question of whether or not the PenAgain is advantageous from an ergonomic perspective. There have been a few studies done that looked at pencil grasp and writing efficiency/legibility and they have not shown a significant impact of grip on efficiency. I am aware of studies that measured pen force on a writing surface and that a lot of this early work was probably fed into development of pressure sensitivity for tablet PCs and SmartPhones, but I don't know that any of it led to any grand conclusions for learning how to write. I think that the best we can say about this right now is that the jury is still out on whether or not these kinds of writing tools improve performance or skill in writing.

The PenAgain certainly promotes what most people consider to be a more 'mature' dynamic grasp pattern. The question is "Does it matter?"

I don't know.

These products are more expensive than standard pens and pencils but the costs are not prohibitive. Some kids might think they are cool so they will be more engaged in writing. That may have some value.

Should occupational therapists use the PenAgain? I think it could be most useful in special case circumstances where someone has a specific positioning need and this particular product could address that need. It is always nice to have product options because most OTs have run across situations that are unique where you say, "Hey, Product X might be worth giving a shot in this circumstance!" The PenAgain might be good for such situations.

I wouldn't toss out all my pens and pencils though or start suggesting that all children should learn with these products. There just isn't any evidence that different grips and grip patterns have a significant enough impact on function anyway. They might for someone. Or they might not. That means that therapists should continue to evaluate people individually and make determinations about whether or not such a product would be helpful.

My unsolicited advice to the PenAgain folks is to develop a product insert that reviews standard and adapted uses of the product, including some information on forearm rotation and wrist positioning. That would make it a little more friendly to consumers so they would know what to do when they pick up the product and try to write!!!

Background reading:

Benbow, M. (1995). Principles and practices of teaching handwriting. In Henderson, A. & Pehoski, C. (Eds.) Hand function in the child: Foundations for remediation (255-281), St. Louis: Mosby.

Dennis, J. L., & Swinth, Y. (2001). Pencil grasp and children’s handwriting legibility during different length writing tasks. American Journal of Occupational Therapy, 55, 175–183.

Ferriel, B.R., Fogo, J.L., et.al. (1999) Determining the effectiveness of pencil grips: An electromyographical analysis, Occupational Therapy in Health Care, 12(1), 47-62.

Annual obligatory rant about health insurance premiums

2011-10-12T14:11:00.003-04:00

Background reading:

2009

2010

Well this year the annual increase to our health insurance costs are only 19% but the plan has a higher out of pocket maximum and slightly fewer covered benefits so it isn't exactly the same plan. I thought I would be clever and call my Provider reps for the different plans and tell them that I would be shopping and purchasing based on information they could give me regarding 2012 fee schedules. Historically, even though the cost for these plans goes up exponentially the amount of increase that any provider might see is just a tiny fraction (and often even ZERO PERCENT) of that increase. Also, what happens each year is that the co-pays are increased so even though allowable fees might go up the costs are passed entirely to the consumer with higher deductibles and higher co-pays. In other words, the insurance company's objective is to put all of YOUR skin in the game and as little of their own as possible.

The mechanisms that allow this to happen are primarily attributed to a farce of a regulatory environment, absolute lack of serious competition in the marketplace, increasing federal and state mandates, and gross profiteering.

For the record, corrections and controls for these mechanisms were exactly what was LEFT OUT of the hilariously entitled Patient Protection and Affordable Care Act.

Anyway, I thought I would purchase a plan that at least dropped a few crumbs from the trough where the insurance company pigs feed. No such luck, because even though we are in the fourth quarter and they obviously have the actuarial data to set rates for insurance plans next year they all report that they don't have the data on what the fee schedules will be for providers. I individually asked the local insurance companies why they think I am stupid and why they are trying to make me believe that they set plan costs without already knowing reimbursements and cost outlays to providers. They were all really good at towing the company lines though - I have to give them credit for that. I am not sure if they really think they are fooling anyone and I also don't know if they sleep with a clear conscience at night but oh well.

I will continue to post these things here because I think it is important for people to know that when the insurance company sets a co-pay amount that is IN EXCESS of the allowed reimbursement to a provider - that means you are having your premium money STOLEN from you. Yes, this year we have plans that actually have $50 co-pays for specialist visits (which is what therapy is identified as) and the amount that they allow for reimbursement is just $42.50.

That means that you pay it all - and it also effectively means that your therapy is no longer a covered benefit - except that they are artificially price controlling your medical care to make sure that they will continue to make as much profit as possible.

The net result is that receiving many services like therapies will be restricted to larger hospitals and institutions that cover the cost by other revenue-enhanced activities like $1000 toothbrushes.

More next year... stay tuned...

When writing gives you the willies: Reconsidering 'tactile defensiveness'

2011-10-08T09:00:00.004-04:00

For as long as I can recall most therapists talk about tactile defensiveness as being an oversensitivity to touch - and that it includes a sympathetic nervous system response that is allegedly 'out of proportion' to the incoming stimulus. The result of this characterization is that most people start looking AT the sense of touch as the primary culprit of the problem. This is why you then see therapists struggling to describe what textures a child tolerates and does not tolerate. This structural understanding of the problem is reinforced by sensory integration theory which posits that children are not able to process incoming sensory information accurately.

In the real world this model is poorly described and subsequently notoriously unreliable - and again you will hear therapists explain the inconsistency in sensitivity as a "sensory modulation" problem because sometimes certain kinds of touch will be tolerated and other times it will not be tolerated. Still, the focus often remains on describing the problem in terms of the sensory channel and not as much on the central nervous system mechanism that governs the response.

I would like to see all this evolve to a point where people understand that there is not a problem WITH the sense of touch. The problem can be observed THROUGH the sense of touch.

This is a pretty important distinction because when we continually describe something as 'tactile defensiveness' it leads people down a natural thinking path that the tactile input is the critical issue that requires study or intervention. That causes us to wring our hands over trying to find a way to accurately and reliably measure tactile localization or how we can provide an alternate form of tactile stimulation that will help to 'modulate' the system. We would probably be better served by also looking at central control mechanisms as opposed to only considering these peripheral tactile-based mechanisms.

This reminds me of some rather large fights I had with a neurologist who HATED splinting when I told him we were trying to see if we could achieve an inhibitory effect on spasticity by effectively lengthening the muscle and 're-biasing' the muscle spindle. He understood spasticity as something that was centrally driven by a lesion and not a function of a whole system - so he used to take my splints and toss them in the trash can. Anyway, not to get off topic, but I am saying that I am aware that we might have some impact on a central problem by intervening at the periphery but that doesn't mean we ignore the central problem either. So I am hat tipping to that crotchety old neurologist.

Still, therapists bristle at any threat to their longstanding description and understanding of the 'tactile' problem. Several notable studies have been completed that talk about 'anxiety' constructs but as close as these studies come to hitting what I think will eventually be considered as the pay-dirt of this problem, they tend to veer off and talk about how this 'anxiety' is co-morbid to the sensory processing problem. This is a classic example of several people feeling different parts of the elephant and describing the elephant in absolutely disparate terms.

I've been thinking about all this again lately because I had a young fellow come into my office recently who stated, "I can't write because I can't touch paper. The only way I can write is when I put my papers into these plastic protectors and I use a marker to write on the plastic."

"What do you mean - you can't touch paper?" I said. This was new for me to have a child be THAT aversive to paper - and then I was doubly surprised to see another clinician describe the same level of sensitivity on an online forum - and TRIPLY surprised to see that for the child discussed on the online forum the school came up with the same solution of writing on plastic overlays. So either we are all talking about the same child or people around the country come up with the same 'solutions' to this 'problem.'

"Touching paper gives me goosebumps. See!!!" Then he dragged his index finger across the VMI test booklet and pointed to the piloerection on his forearms. Indeed, he had goosebumps. "Its not just goosebumps. Touching paper also makes my teeth hurt."

The problem with my young friend's story is that as far as I know there are no tactile receptors for paper. Over the course of the evaluation I observed him touching other objects of equivalent texture quality and with equivalent amplitude or force. I also brushed papers against him when he wasn't paying attention and couldn't elicit the same physiological response. I also focused his attention on his hands while I was checking range of motion, and while doing so brushed and rubbed his forearms against the VMI test booklet that was resting on the table. No aversive response. Still, the piloerection that he could automatically elicit by dragging his fingers across paper was very real.

I qualitatively checked his stereognosis using the SIPT Manual Forms Perception subtest and he was functionally unable to discriminate the forms, but he did not have any defensiveness to the plastic pieces of the test. I also checked for defensive responses by trying the Localization of Tactile Stimulation Test and the Graphesthesia test and he was not defensive to that stimulation either. He had no other apparent or reported defensiveness to sound or movement or visual stimulation. He was a very picky eater. Still, none of this helps to explain his defensiveness to paper.

I get a lot of referrals like this, actually. Kids are 'defensive' to their clothing, or they are 'defensive' to their shoes/socks, or they are 'defensive' to having their hair washed. These all tend to be very focal kinds of defensiveness and in fact they cause severe functional difficulties with ADL completion or school. But how can we understand this in 'sensory' terms when there is no physiological explanation or consistency based on what we KNOW to be true about tactile perception?

The answer to this is that we need to understand that sometimes the explanation is best found in behavioral terms and conditioned responses. Although there may have initially been some developmental sensitivity or even a negative sensory experience, the operant cause of the piloerection and tooth pain can sometimes be conditioned fear.

If we consider this as a possibility, our interventions change dramatically. You still might try some 'brushing' technique IN CASE there is some local physiological dampening effect on the overall amplitude of incoming sensory messages to the CNS. You might get equal impact off of the placebo effect of giving the child attention and suggesting that the intervention actually works. You might also try progressive desensitization and relaxation training.

The particular child I saw had many other problems in addition to his 'paper sensitivity.' There were perceptual deficits, hyperkinesis, mood instability, and many other problems that all can cycle around a chicken or egg argument of what was causing what. I can state rather emphatically that he does not have tactile defensiveness (if that even exists). However, we can understand his central emotional regulation problem that is triggered by a conditioned fear to very specific forms of tactile input.

This distinction matters because accuracy in understanding the problem can lead us to correct interventions that respect the scientific evidence and our understanding of how sensory processing actually works.

Quick thoughts for background reading:

Masuda, Y., Suzuki, M., et.al. (1999) Developmental and pharmacological features of mouse emotional piloerection. Experimental Animals, 48(3), 209-211.

Reynolds, S., & Lane, S. J. (2009). Sensory overresponsivity and anxiety in children with ADHD. American Journal of Occupational Therapy, 63, 433–440.

An open letter to an occupational therapy evaluator

2011-10-05T10:33:00.005-04:00

Dear Evaluating Occupational Therapist,

You evaluated a preschool child who has been receiving private occupational therapy for a year. I referred the family to their local school district because I thought it would be a better option for the family to receive services this way. Your evaluation was thorough and a fair representation of how that child functions - which is always good to see because sometimes evaluating preschoolers is tough and their performance can be variable. I was a little disappointed that you didn't make any attempt to contact me and get any input on the case. I think it is important for evaluating therapists to talk to previous therapists especially when high stakes decisions are being made, like eligibility for services through a system.

The agency that you work for sent a very nice person to the CPSE meeting to represent all of the evaluations that were completed. I asked the representative person what their position and role was at your agency and I learned that this person was a representative. I asked a second time and was told that the person was a representative for CPSE and CSE meetings. I didn't want to ask a third time because it might have been embarrassing - so I am not sure if it was a janitor or the executive director from the agency. They were very nice though.

The Representative read selected portions of all the evaluations at what I would call breakneck speed and it was very difficult to process the information that was provided so rapidly. I read over all of the evaluations prior to the meeting so I would be fully prepared to discuss them and am very familiar with all of the contents. What came across in the rapid review was not fully representative of what you and some of your colleagues documented in the evaluations. It was close, but it was not really accurate. At this point in the meeting I started to worry a little.

The CPSE chairperson was also very kind and friendly. I was happy that they asked me for my input. I explained that I worked with the family for a while and encouraged them to pursue services through the CPSE. I told them my own evaluation findings which were pretty close to yours. I spent some time going over the ways that this child would have difficulty in a pre-academic context, because it really wasn't explained all that well by the Representative.

I think that the CPSE chairperson was pre-disposed to finding the child eligible because no questions were really asked - which was good, because the evaluations that were completed really did support the child's classification. You didn't put any recommendations for services in your evaluation - I know that a lot of therapists don't because they are told not to put recommendations into their assessments. I understand that the idea is that final determination of eligibility and services provided rests with the CPSE - which is fine - but I still stand quite firm in the belief that the recommendations should be made and then the committee should be responsible for accepting, rejecting, or modifying those recommendations as the full committee sees fit.

I find that committees don't like to have dissenting opinions in the room, and I think that is unfortunate because when everyone is agreeing it really undermines the collaborative planning process that is actually supposed to be occurring. It really would have been OK for you to make some recommendation - and then the whole group can decide what the best solution is in context of all the other information on the table. Something bad happens when you don't make any recommendations at all - and I think you really need to know about it.

So the good evaluation that you completed was reported a little inaccurately because you weren't at the meeting. The janitor or executive director representative really didn't understand the full nature of this child's difficulties, but it was mostly ok because I tried to fill in the gaps and thankfully the CPSE chairperson was in essential agreement anyway. Something odd happened though because there were no recommendations about frequency or duration of service from you - so the CPSE chairperson turned to the district speech pathologist who has never before met the child and said

What do you think?? Once a week or maybe twice a week??

Well you can thank this very nice speech pathologist who never met the child before because they thought the child should get OT services at least twice a week. I have absolutely no idea why the CPSE chairperson would ask the district speech pathologist this question but in this situation it worked out ok.

So I know this is a long letter, Evaluating Occupational Therapist, and you are probably really busy and perhaps being so busy made it impossible for you to represent your evaluation at a child's meeting. I just thought you might want to know that THIS TIME all the stars aligned:

even though you didn't contact me about the child's therapy history and performance
even though the agency representative didn't represent your evaluation very clearly
even though you didn't make any recommendations in your report
even though some random speech pathologist made the determinative statement on how much OT the child should receive

So EVEN THOUGH all these factors were working against this child today I certainly know better than to open my mouth and stop something that just happens to be working in a child's interest. Call it good fortune. I prefer calling it divine intervention. Either way, it worked for a child today.

It might not work out so well next time - so I thought you might just want to be aware of this story.

"Adult Sensory Processing Disorder:" What greed hath wrought

2011-09-28T10:33:00.004-04:00

I am writing this entry in the hope that it will be referenced as well as my other pages on "Adult Sensory Processing Disorder." Look here for more information.

As I have discussed in the past, I advocate a conservative approach to understanding these difficulties that people report. Unfortunately, there are some rather unscrupulous people in the world who have set up websites where you pay money to take a test and then they will tell you if you have "Sensory Processing Disorder." I won't link to those sites because I don't want to drive any traffic to them.

People who are having difficulties may be easily fooled by this kind of scam. It is a free world and if people want to pay money for Internet tests then I suppose that is their business - but I am also free to state that in my opinion sending money to get this "diagnosis" is a colossal waste of money and may actually divert people from seeking appropriate care from their doctors. If the people who made these online tests are therapists, and there is no evidence actually that they are, then they are also extraordinarily unethical.

That leaves you with some unknown people capitalizing off of the needs of others. To me, it is abhorrent behavior. Here is an email that someone just sent to me:

Hi,

I am "losing my mind" so to speak and think I may have sensory disorder.

I took a test online and had a high score on most items... what do you recommend as the next step for actual diagnosis?

Which type of doctor do I make appointment with? Or can OT administer testing without a doctor?

I am scared and confused and looking for help to point me in the right direction so I can get some relief. I currently see a family doctor for ADD and take meds but it's not helping...

Thank you for your time,

NAME REDACTED

I am sorry that people like this are wasting money on these unknown and online "Sensory Processing Diagnosticians." People who are experiencing difficulties should speak directly with their MD if they think that their current intervention plan and medications are not effective.

There are NO valid online tests for sensory processing difficulties. If people believe that they are having difficulties that interfere with daily life functioning they should speak to their MD who can refer them to an OT who will collaborate with the MD to develop an appropriate and evidence-based intervention plan.

For whoever is posting and profiteering from these online "tests" - you should be ashamed.

Federal education policy: A Shakespearean tragedy

2011-09-22T11:31:00.007-04:00

The players:

Yorick: The No Child Left Behind Act (NCLB)
Horatio: Education Secretary Arne Duncan
Hamlet: President Obama

The plot: After overwhelming bipartisan support for education reform and an honest but failed attempt at tackling a problem, partisan hacks run for the hills and blame a former President for his education policy. Background reading here.

______________

Obama:
Alas, poor NCLB! I knew him, Arnie Duncan; a policy
of infinite bipartisan support, of most excellent intentions: it hath
borne us on its back a thousand times, and now, how
abhorred in my imagination it is.
Here hung those standards of which I have praised I know
not how oft. Where be your requirements now? Your
purpose? Your promise of school choice? Your flashes of expectations,
that were wont to set the teacher's unions on a roar? Not one,
now, to praise your own objectives. Quite chap-fallen?
Now get you to my Cabinet's chambers, free from Congressional oversight,
and have them paint an inch thick, to this favor they must
come; make them laugh at that. Prithee, Arne Duncan, tell
me one thing.

Arne Duncan:
What's that, my lord.

Obama:
Dost though think my plans to close Gitmo looked o' this fashion, i'
the earth?

Arne Duncan:
E'en so.

Obama:
And smelt so? pah!

Arne Duncan:
E'en so, my lord.

Obama:
To what base uses we may return, Arne Duncan. There
may still be jobs for us in Chicago when we are done.

Occupational therapy interventions to prevent bullying: Second in a series

2011-09-20T11:09:00.005-04:00

Bullying is not just a part of growing up. Just because something happens does not mean that it is normal or should be tolerated. I am aware that many people 'live through' their bullying and think that it is enculturated into childhood - but that opinion only holds up in the mind of someone who was victimized and then grows past the problem.

Not all children are so resilient - particularly those who already have differences from the 'social norm' that are causing them to be targeted.

The need for a different level of bullying intervention is brought to a tragic light for us locally in Western NY because of the apparent suicide of a high school student over this weekend.

Perhaps I don't have much to say, or maybe I just feel like anything I was going to say feels like it rings a little hollow in context of the real story. Please go read about Jamey Rodemeyer. He perceived himself as different and perhaps was victimized because of these differences. Sometimes these differences are in disability status, or in physical appearance, or in sexual orientation, or anything. The differences themselves serve as the catalyst for negative behaviors from others who often are having their own differences or difficulties.

What I was going to present (and now sounds too academic when I read what I wrote) is that bullying is a mental health problem. It is a mental health problem for the person subject to bullying, and it is a mental health problem for the bully.

The details of this particular situation are still unknown so I hope that my comments are not interpreted in the context of anything that parents or schools or professionals or kids themselves in WNY should have done. Rather, I think that if we take the opportunity to frame the problem as a mental health issue we will be in the best position to leverage all possible resources to help prevent these tragedies.

Not everything in the world is preventable, even if we want it to be. Still, we have the opportunity to ask ourselves some questions:

1. What was the culture in the school? What rules or systems were in place to promote respectful social interactions?
2. What was the point of intervention? Was it just the child or was it the bully too?
3. Did the parents have access to all the resources they needed? Could anything have been done to give them access to even more information/resources? Could that have helped?

For the near term, at least locally, we will have many more questions than answers. Still, I hope that we can take this tragedy and change some things.

I suspect that this community is not alone in its need to change some things.

You know those EI cuts? OH NEVER MIND!

2011-09-09T18:43:00.003-04:00

Proposed changes to early intervention reimbursements have been temporarily shelved. Today Brad Hutton, Director of the NY State Early Intervention Program, sent out an email stating:

The Department has removed from this regulatory package the changes to the payment of home and community-based and facility-based visits. The Department remains committed to continued examination of the EIP reimbursement methodology and intends to have more discussion about this and other proposals with its Reimbursement Advisory Panel in the coming months.

I know that a lot of people are very happy about this, but it is important that we consider all of the events that led up to this recent decision.

As I have discussed here frequently in the past there is no question that there is need to revamp billing for this program to help support collection of payments from insurance plans. The problem is that we just witnessed and experienced an extraordinarily irresponsible and haphazard attempt to fix the problem. In fact, in attempting to 'fix' the problem, the direct actions of the Early Intervention Program administrators have reduced the numbers of providers who are still willing to work with the program and there have been program closings based in part on uncertainty that was created because of real and proposed cuts.

I know many therapists who left pediatric positions, I watched programs close, and I have listened to and participated in the worried conversations of therapists who were left wondering if they would even have a program to work in. I have directly observed the creation of waiting lists for services and watched families opt for private therapy because they didn't want to wait for the EIP or they were unhappy with the fact that experienced therapists were leaving the EIP. There has been significant damage already done - and NOTHING has been done to fix the underlying administrative problems with insurance billing. Instead, we have seen the NYS government legislate looser standards so that the EIP has a better opportunity to collect payments. In other words, the government has been unable to manage with efficient operations so they changed the billing rules for themselves.

And now are providers going to feel better about this email from Mr. Hutton? What is it that people are supposed to get from this? OH NEVER MIND! WE WERE JUST KIDDING ABOUT THOSE CHANGES. SORRY THAT KIDS DON'T HAVE ACCESS TO SERVICES LIKE THEY DID BEFORE. SORRY YOU QUIT YOUR JOBS. SORRY THAT YOU CLOSED YOUR AGENCY. SORRY THAT I BLEW THIS WHOLE THING UP.

How will this irresponsible email promote a sense of stability in the program? Based on past history, why would anyone trust the EIP? This will not cause agencies to have confidence to hire therapists and the waiting lists will likely continue.

I strongly encourage Governor Cuomo to appoint EIP administrators who have experience in the real world of EIP service provision. There are many private EIP agency directors who would have a better grip on the problems facing the program and how to introduce reform in a responsible manner. No one is served by whimsical flip-flopping, publication and retraction of proposed industry-changing regs, and an apparent inability to understand the impacts that these actions have on the program and most importantly on the families who depend on the program.

Also, our Governor needs to develop an improved system of regulatory reform review. NY State had this in concept with the Governor's Office of Regulatory Reform that was established under Pataki and subsequently dismantled under Patterson and Cuomo. Although not all aspects of this program were as successful as others, in concept it provided a mechanism of regulatory review that may have prevented the Early Intervention Program regulatory debacle. These governmental entities need to engage in real outreach to the constituents BEFORE regulations are proposed. That would go a long way to promoting a reality check when new regulations are considered.

Regulations have an impact on families and children who receive services from these programs, and they have an impact on the businesses in this state that are set up to deliver these services. Someone seems to have forgotten this fact.

We had a program that had funding challenges, and now we have a program that has funding challenges and a seriously demoralized workforce that has no sense of stability. It is shameful stewardship of this very important program, and New York citizens deserve much better.

Occupational therapy interventions to prevent bullying: First in a series

2011-09-02T10:53:00.005-04:00

One of the biggest concerns that we hear about from parents relates to how their children are functioning socially in their schools. Most schools have 'anti-bullying' or 'bullying prevention' programs in place. Recently, there is a lot more talk about bullying in school environments but that hasn't seemed to stop the behaviors much in the perspective of many families whose children still struggle with the problem.

It is important for parents to know that there are different kinds of bullying - and just because a program is established or policies are in place in a school that doesn't mean that bullying will cease to occur. Broad programmatic anti-bullying efforts like those listed on the OSEP website tend to speak to the whole school population and attempt to create a culture of respect that works on a very broad level. As a result, most kids understand that peer exclusion, relational aggression, and even direct bullying is not acceptable.

However, these programs seem to work best when the differences between children are least notable. In other words, these bullying programs don't work as well to address problems related to helping children tolerate broader differences - so the more overweight, or the more short, or the more learning disabled, or the more speech-impaired a child is then the more difficult it is for kids to act and react appropriately to those differences.

Some of this is a function of normal social development - children struggle with understanding the complexities of social group norms and at the same time develop tolerance for differences from those norms. We have an opportunity to intervene when children react negatively to their peers because of perceived differences that really should NOT be a threat to the establishment of their social order.

I don't mean to imply that peer on peer bullying between relatively 'equal' kids is not a concern because in fact it is - but that we need to develop different interventions for kids when those differences are more magnified. This is difficult for adults to do, probably because most adults are not particularly adroit with tolerating differences themselves. In that sense, the behavior of children is not terribly different than the behavior of many of the adults in the room - but we need to start intervening somewhere.

Sometimes I think that the reasons why some forms of bullying persist is because it is what I call a 'Low-N' problem. That means that it is generally only impacting a very small number of children -those who are falling most far from the 'acceptable' ranges of the social order.

So, the first thing for parents and OTs to do when they want to understand how to address bullying behavior is to understand bullying in its various forms - and then think about what is driving that bullying behavior. I encourage both parents and OT practitioners to study bullying laws in their states and the programs in their local districts and understand how those programs are most directly effective in tamping down negative social behaviors for the broad population. This is a great place to start and will lay a good foundation for being able to intervene with persistent problems at the individual level.

My next blog post will talk more about what steps to take to address bullying problems on the individual level for those students who are still often subject to bullying despite the presence of school-wide prevention efforts.

A Machiavellian win for the NYS Early Intervention Program

2011-08-22T17:38:00.004-04:00

Well I believe in equal opportunity blogging so when NYS does something correct with the early intervention program I have to herald the effort.

On August 17 Governor Cuomo signed a bill that facilitates payment of claims by health insurers to municipalities for early intervention services.

In a previous blog post I talked about the 85% denial rate that exists because the state government doesn't know how to collect from private insurance companies. This new law causes the IFSP to meet any precertification, preauthorization and medical necessity requirements imposed on benefits under any insurance policy.

There are additional new rules that prohibit insurers from denying claims based on the location where services are provided, the duration of the child's condition or that the child's condition is not likely to improve within a time specified in the policy, the absence of a referral by a primary care provider, or that the provider is a non-participating or non-network provider.

I would prefer that municipalities simply bill the same way that I do in my private practice. It would save a lot of time and hand-wringing about having to codify this into law and make excuses for government ineptitude.

Imagine if private practice billing could be made so easy with the stroke of a pen! Although this is ultimately good, it is also a lesson in how ridiculous it is that the government, being unable to play by the rules that everyone else on the planet are subject to, decides that the rules don't apply if they are playing. Hilarious.

Maybe I should try a letter like this:

Dear NY State:

The mean insurance company won't pay me because I don't like to follow the rules. I don't want to be a participating provider, I don't want to be subject to their timely filing requirements, and I don't want to answer to any of their demands. Therefore, please make them suspend all the rules for me - just like they did for you.

Do you think that would work?

Anyway, despite the hilarity of it all, it really is a good thing because the EIP will exist longer into the future if it is able to recoup money from insurance companies. This is NOT a new mandate - the insurance companies just got really good at denying EIP claims because no one in the EIP system knows about medical billing. Now the heavy handed government is going to make them pay whether they follow the rules of proper billing or not. I guess the Prince felt that he had to defend his State, blah blah blah. I know, I don't like the means either. Sigh.

Oddly, the United EI Providers Group made a little noise about this bill and lobbied people to try to stop it. As I mentioned before, I respect that they object to reforming EIP on the backs of providers but I think their analysis of this issue is as sharp as a marble. This law has nothing to do with direct access and it won't change all that much on the practice side of things and it is not a cleverly concealed stimulus program for primary care providers - so in total I just don't get the objections. Oh well.

So this was a good thing for the Early Intervention Program, even if it was a little Machiavellian.

The best way to discharge a patient.

2011-07-25T09:59:00.006-04:00

Life is complicated enough that I try to avoid having existential crises as often as possible, but it is Monday and humans are natural meaning-makers and I can't escape my tendencies.

Anyway, I was perusing Facebook this weekend and saw a partially familiar face as a 'recommended' friend. I am not certain of the algorithm and logic that Facebook uses to make these recommendations - I imagine it is at least loosely based on 'degrees of separation' computations.

The partially familiar face was Freddie, who I have not seen in many years. I worked with Freddie when he was on the cusp of his adolescence. I remember him as being an intelligent and extremely likeable fellow who had some pretty tough problems with his handwriting and social skills. He made a lot of developmental progress while I worked with him, and as with most kids there seemed to be a time when he just no longer needed the direct intervention. The last day of seeing a child for therapy is always a little bittersweet.

About 5 years after he was discharged he visited my office and delivered a package of candy. At that time he was near 18 and we had not seen him for a while but he felt compelled to ride his bike over and visit. I was not there that day and I have long regretted that I missed the opportunity to see him.

What sticks in my mind about Freddie is that he opened up the first day I met him and told me that in his perception he was a really cool kid up until kindergarten and even during kindergarten he was popular and had a lot of friends. However, he had some learning difficulties and he was 'forced' to repeat the school year. In his mind that equated to absolute relegation to the trash heap of the school social hierarchy. He stated that from that moment on he was known as "Mr. Held Back" which was akin to having to experience "EMOTIONAL HUMILIATION" on a daily basis.

Now I don't know if other elementary school children actually called him "Mr. Held Back" but it didn't matter because Freddie THOUGHT they did. I capitalized "EMOTIONAL HUMILIATION" purposely, because there has to be some way I can transmit how large of an issue this was for him.

Freddie hurt, and I listened. I tried to help.

Children (and their parents!) often give little gifts to their therapists for holidays or events. At some point in time Freddie gave me a Newton's Cradle, which is the photograph at the top of this entry. It still sits on my desk and it is a daily reminder of Freddie and his keen mind that was interested in physics. To me, that Newton's Cradle also represents the significant restraint contained within those natural laws that dictate the motion of bodies in space based upon directed forces, velocity, and mass.

I never talked about those constraints with Freddie because the whole point of intervention was to find a way past the forces that constrained him. In that way it was an ironic gift - a fact that I am absolutely certain would not be lost upon him if we discussed it today because he had an extraordinarily keen skill for analysis, even if he couldn't write legibly to proverbially save his life.

There is a lot that an occupational therapist can do for a child - handwriting can be improved, organizational skills and systems can be practiced, and even to some degree an OT can help children develop social skills and point out ways to improve interaction with a peer group - even when the child believes that the peer group practices EMOTIONALLY HUMILIATION at every turn.

No matter what I tried, I don't know that I was ever able to find a band-aid large enough to cover that wound of EMOTIONAL HUMILIATION. Really, how can you fix such a thing?

Well after seeing Freddie on Facebook over the weekend I came to my office this morning, pulled out his chart and noticed that he is over 21 years old. I also noticed that I have not seen him in over eight years. Under this context, I am not obligated to keep his medical records any longer.

So I imagined I could defy the laws of physics.

I grabbed a hold of the constraining tether of EMOTIONAL HUMILIATION that returned his pain at a roughly equivalent velocity back at his actions and I dumped his file into the shredder.

Now there is no record of emotional humiliation attached to his name in the real world and I have found a way to completely bypass the rules of how momentum and energy are conserved in that system.

Only echoes remain - edited and recorded on the Internet so someone else can learn - call it a system in a parallel reality that is only loosely connected to the real thing.

And I wish freedom and peace for Freddie, who in my opinion deserves them both in large quantities.

The lost art of evaluation in pediatric occupational therapy

2011-06-23T10:03:00.004-04:00

This is a topic that is probably long overdue - it is something that I have observed in my geographic area for a long period of time. Based on conversations I have with therapists around the country I know that it is not exclusive to my area.

Increasing demands on therapist time, decreasing reimbursements, and dependence on a non-centralized workforce that is not subject to an intense quality improvement process has contributed to significant changes in how occupational therapy 'evaluations' are completed.

Our agency made attempts to impact this system while contracted to complete some evaluations, but 'contractor status' did not place us into a position to make broad system changes. Now it seems that the entire community is stuck into a cycle of low expectations based on long history. Unfortunately, there is no centralized service delivery system or 'top-down' method of assuring quality control - so I think the only way this can change is for the stakeholders to start increasing awareness of the problem and having a conversation.

Both therapists and parents should be interested in this issue. Therapists should be interested because I am calling the quality of our collective 'evaluation' work into question. Parents should be interested because they should know what to expect out of an occupational therapy evaluation for their children.

The American Occupational Therapy Association publishes standards of practice that outline some basics that should be part of all evaluations - but these standards are not very specific. Many evaluations that I see completed as a part of preschool and school-based practice do not even meet these basic standards. Currently, many evaluations that I am seeing can be outlined as follows:

Very general statement regarding the child, including name, classroom, and very minimal if any history
Long boilerplate descriptions of standardized tests that were used, followed by a very brief report of the child's performance on those tests
A 'summary' section with minimal if any analysis and deferred decision making to the CPSE or CSE regarding eligibility for services.

I understand how 'evaluations' have devolved to this state - there are significant time demands and therapists do not have the time to complete lengthy evaluations. Also, there is no demand from CPSE or CSE for higher quality because the bottom line from the committee perspective is 'are children eligible or are they not eligible.' The committees are not in business to promote best practice; they are in business to determine eligibility. If a committee is receiving an evaluation report from a therapist it is generally making a de facto assumption that the evaluation being handed to them is appropriate and complete. Committees occasionally receive feedback about quality because some parents identify that the 'evaluations' are inadequate - and that causes external data (like a private evaluation) to be brought to the table.

External data in the form of a private occupational therapy evaluation causes a lot of consternation to committees, who don't understand 'what is wrong' with the evaluations completed within the system. That causes committee chairs and their committees to be puzzled at what is documented in a private assessment - and contributes to the general sense of 'that's not the way that we do things in schools' or even more commonly 'that is a clinical evaluation and not a school-based evaluation.' The most discouraging part of this problem to me is the engendered culture of low expectation and how practitioners create these myths about what constitutes acceptable practice.

The role of related service providers and their relative power within schools also contributes to the problem; this group of professionals is generally not in a position to take on the systems where they work and they are not always likely be on the front lines of change promotion within their systems.

Anyone who has been involved in this system for any length of time can identify with this issue.

So what can we do to change this?

I don't want to talk about 'best practice' because the term is overused and I also don't think it represents an intermediate step that we can reasonably take to improve. Let's talk about 'better practice.'

'Better practice' means taking a step forward from where we are now. It might not be best, but it is moving in that direction. From our current position, I propose the following for 'better practice' occupational therapy evaluations completed for CPSE and CSE:

Background information including reason for referral, identification of medical issues, and lists of allergies and medications. Birth and developmental history need to be present, including history of CPSE or CSE involvement. The inclusion of developmental and medical history does not make an evaluation 'clinical.' This is basic information that is required to form a contextual understanding of the child's performance difficulties.
Description of the child's ability to participate in the assessments. This also provides important contextual understanding of the results.
A LISTING of the assessments used. If there is a value to 'explain' the tests for the parent audience then provide the parents with a separate sheet of paper with that information. The evaluation should never be 90% boilerplate explanation of what tests were administered.
Direct performance observations AND performance on testing. Organize observations and test data into logical performance categories such as 'Physical skills,' 'Sensory skills,' 'Cognitive skills,' 'Regulatory skills,' and 'Social/emotional skills.'
Apply this to actual function in their environment, including observations of how these performance attributes impact participation in personal care, learning, and play or socialization. Here it is likely that school based therapists will limit the 'environment of concern' to the school setting, which is appropriate.
Summarize the findings, identifying areas of strength and areas of need. Form a summary opinion of what is happening with this child's life and make referrals for other services as needed.
MAKE AN ACTUAL RECOMMENDATION! There is nothing wrong with giving your professional opinion. It is up to the committee to accept or reject your recommendations. That DOES NOT MEAN that you defer recommendations to the committee. This is where many committees fail - because it is absolutely fine for professionals to make recommendations and then for a committee as a whole to review those recommendations and decide what is most appropriate. For example, you may identify that a child's needs are so severe that you recommend OT three times a week. However, you may get to the committee meeting and find out that colleagues in PT, speech, and education made similar recommendations for their domains and in total it would be 'too much' for the child to tolerate in their day. The committee may then consider that a different level of service or an altered service delivery method is needed in consideration of ALL the data on the table. That is fine and is actually the STRENGTH of multidisciplinary planning.
Follow up with the parents and teacher and talk to them on a regular basis so that you are not providing or documenting this service in a vacuum.

These are just some preliminary ideas. I am interested in feedback - again with the intention of promoting 'better practice.'

If we take some solid first steps, wouldn't it be nice to have a conversation about 'best practice' next?

NYS Early Intervention Update - SEICC meeting

2011-06-15T16:10:00.006-04:00

The State Early Intervention Coordinating Council held a meeting on June 14 (yesterday) to accept or reject the new regulations regarding issues including the 15 minute increment billing and adjusted early intervention rate calculations.

I just finished speaking with Holly Kennedy from the EIP and she confirmed that the current rulemaking was rejected and that there will be a new rulemaking (look for the new Rules proposals in the Register around the end of June).

There will be another 45 day comment period (but no public hearings). Ms. Kennedy stated that some alternate proposals may appear in the rulemaking but she was not free to be specific about those at this time. I have some initial information about those proposals but won't publish my information until I can verify and source it.

Finally, I was told that any current service plans will continue in effect past any new rules - and will be revised on an individual basis during the regular review period.

When I get details about the new rulemaking I will post them here or if they are brief enough - on our Facebook page.

My apologies that this is more fact than analysis - but at this point I am figuring that anyone interested in this particular topic understands the issues. If there are specific questions I can address about any of this please email or comment.

Stay tuned.

UPDATE: 6/21/2011

I wanted to provide a link to the full meeting. It is rather lengthy, but for those who are inspired I recommend watching the section on revised rates, the section on proposed revisions (the 15 minute increment issue), and the public comment. You can access the video at http://www.totalwebcasting.com/view/?id=nysdoh

The EIP party line on proposed rate changes is that they 'can't comment' on them because they have not yet been proposed. The good news is that they scheduled some public forums to gather feedback but the bad news is that they scheduled the release of the regulation revisions AFTER the meetings.

The EIP reports that they expect to realize 6.2 million dollars in savings in FY 2012-2013 but that these savings will not represent significant changes in reimbursement. I believe this can be said with a straight face because they are operating under a general assumption that a 45 minute session length is standard. Of course it is not - as was expressed quite vociferously in the public comment period on the video.

I believe that it is dishonest to state that this level of funding cut won't be significant. I also believe that it is fundamentally dishonest to schedule public forums before the proposed changes are announced.

The jaw-dropping moment of the video happens around 182:53 when EIP Executive Director Brad Hutton stated, "I think its fair to say that actually these proposals came out of discussions at the RAP [Reimbursement Advisory Panel]... we felt like the genesis was the general public of external stakeholders." Someone needs to tell Mr. Hutton that with all the legitimate questions about following the NYS Open Meetings Law, the significant challenge with obtaining minutes of the RAP meetings, and believing that providers helped generate these back-door reimbursement cuts qualifies this statement as the Pinocchio Story of the Year.

Watching this video will help you understand that our government programs are inefficient, poorly managed, and unable to be financially maintained with all of the perpetual bureaucratic bloat and mandate.

Redux for practitioners: Continue to prepare for sea change in how you deliver your services.

Redux for families: Begin to plan for new ways to meet your children's needs.

The news is so sad today I don't even know what to say.

2011-06-09T16:12:00.005-04:00

There are a couple important stories in the news today that everyone needs to watch.

In this first story we see an absolute lack of understanding in how a governmental agency responded to an adult who was trying to board a plane with his family:

Dr. David Mandy: Special Needs Son Harassed by TSA at Detroit Metropolitan Airport: MyFoxDETROIT.com

In the second story we see people completely disrespecting and interfering with a Special Olympics activity. It is certainly within their rights to express their displeasure about whatever they want, but sane people would choose a time and place that is appropriate for such a protest:

Lastly, and most tragically, is the continued failure of NYS - all these years after Willowbrook we thought it would never happen again:

It is very clear to me that as a society we still have a very long road to travel.

Orwellian analysis of CSE meetings

2011-05-13T14:52:00.003-04:00

Sometimes when children progress from preschool to school it is determined that they still need to be classified and receive special education services. Sometimes it is determined that they should be declassified. There is a defined process that is supposed to be followed.

Patrick is a preschooler who has disabilities and if he enrolled in kindergarten last year he would have either continued his classification and received services OR continued his occupational therapy services in the school under a declassification plan for one year. Given his severity of delay he would have also been a likely participant in a summer readiness program designed to help support children's performance when they are struggling with key developmental skills.

The goalposts have been moved again this year. Now there is no summer readiness program and there is no declassification plan. Part 200 regulations governing the special education program in NY State have not changed, and clearly state:

(iii) If the student has been receiving special education services, but it is determined by the committee on special education that the student no longer needs special education services and can be placed in a regular educational program on a full-time basis, the recommendation shall:

(a) identify the declassification support services, as defined in section 200.1(ooo) of this Part, if any, to be provided to the student; and/or the student's teachers; and

(b) indicate the projected date of initiation of such services, the frequency of provision of such services, and the duration of such services, provided that such services shall not continue for more than one year after the student enters the full-time regular education program.

Instead, one local district took Patrick's CPSE referral, tossed it into a CSE subcommittee, and determined that a referral to full CSE doesn't even need to happen. They made this determination based on the opinion of the CSE chair. No evaluations were completed, and the intent of the same district's CPSE was completely disregarded. I called the CPSE people in the district to inform them of what happened and they acted shocked. There is a new and tall 'WALL' being constructed between CPSE and CSE in many districts - and it allows this kind of shenanigans to go on. The CPSE people are conveniently 'protected' by these decisions because they can claim that they have no knowledge of what happens after a child is sent to CSE for referral.

That is about as honest as living in the home of a meth dealer and telling the police that you thought the person just had an innocent chemistry hobby.

If the CPSE wanted to declassify they would have had to do a full complement of evaluations and they would have had to justify why declassification was happening. Instead, it got passed to a CSE subcommittee where the referral was unceremoniously trashcanned. They will argue that it was a fair process that appropriately considered the situation - but that is a falsehood.

Some parents attend their meetings and see this happening with their jaws agape. Other parents do not attend their children's meetings at all and never know it is happening.

I document this for everyone because without the documentation there is no record. If we fail to talk about it and document it then the goalposts get moved every year. Committee chairs are free to work in their Ministries of Truth and throw last years practices down the memory hole, rewriting history and acting as if children NEVER got these services before.

Well children did receive the declassification services before, and they were afforded a correct referral and correct consideration by the CSE. Regulations did not change - they are just not being followed - but the Ministry of Truth wants you to think that nothing is different.

Except I was there last year and I am here this year, and I am witness.

Now you know too.

Reference:

NYS Part 200 Regulations
http://www.p12.nysed.gov/specialed/lawsregs/2001-2005-Mar2011.pdf

The perils of ex post facto cost reporting

2011-05-11T15:31:00.000-04:00

Cost accounting is boring, I understand, but I hope providers and families read this so that they can empower themselves to push back against the systematic dismantling of the NYS Early Intervention program.

As previously blogged, NYS is engaging in a cost reporting process for the early intervention program. Cost accounting is a valid tool used by a business to establish actual cost for delivering goods or services.

Unfortunately, the NYS government is going about this process in a backwards direction. Generally, the results of cost accounting projects are used to inform stakeholders about costs so that appropriate reimbursement rates can be set. However, in NYS, the rates to providers have ALREADY been cut 15% in the last year and an additional functional cut of 33% is proposed to begin on July 1 by back-door manipulation of the billing and coding system.

Why then, is the NYS Department of Health engaging in an exercise of cost accounting when reimbursement cuts have already been made?

Many early intervention services in NYS are provided by independent contractors and small agency providers. Many of these people only dedicate a small portion of their productivity to the early intervention program. For example, an independent contractor may 'pick up' a couple EI cases to supplement their other employment. Alternately, a small agency may have individual staff see a couple EI cases as part of a much larger caseload that includes private work, contracted work, or preschool work.

NYS is asking providers to ATTEST to how much of their time and resources were assigned to the EI program in 2009. It is a burdensome exercise but it is possible to extrapolate how much revenue could have been achieved in a designated time frame in 2009. It is another matter altogether to make definitive statements on how much phone use went into the EI program in 2009, or how much equipment and supplies could be partitioned off to the EI program. This kind of information might be easy for an agency that exclusively or near exclusively provides EI services, but this is data that is not accessible on an ex post facto basis by most providers in NYS.

An easy solution to this would be to make it up, or designate use based on percentage of revenue generated - but this could be wildly inaccurate - and if the actual purpose is to gather valid data on how much it ACTUALLY cost to provide a service - you can't rely on proportional assignment of expense cost.

It is an additional matter altogether to ask someone to make an attestation that information is true and correct when it is impossible to know if the information is true and correct.

This matters because we don't really know what the state is wanting this information for - after all, the cuts to the program have already occurred!

Even more disturbing, the DOH is requiring detailed and proprietary business data including building/agency assets and staffing models which effectively equates to being required to divulge a business plan. It does not seem unreasonable to require providers who take taxpayer monies to conduct cost reporting on that aspect of work that is being subsidized by the government -but is it an over-reach to also require providers to provide in depth IRS-level accounting to a state agency that has no business having access to that data and when it is unclear what that information is being used for and why it is even being collected.

The slick answer from the state remains that they want to know how much it costs to provide EI services. The real solution is to do the following:

1. Develop a model that captures the full activities from referral to discharge, completing time and resource allocation studies on the entire EI process on a case basis. Gather enough data so that broad conclusions can be made about actual costs.

2. Study the cost differences associated with different models and organizational systems of care. It is possible that they could actually LEARN something from this level of analysis.

3. Develop the model and provide training so that time and energy can be recorded in REAL time, and not done ex post facto.

There is a deeply cynical side of my analysis that does not understand why this project is being completed. There are questions that inquiring minds want to know - and I have been asking them for over a month with absolutely no direct response to the questions:

1. Why is NYS Department of Health completing a cost accounting project "to inform stakeholders of actual costs to deliver services" when the stakeholders (the legislature via budget and the Governor via back door regulation change) have ALREADY CUT THE REIMBURSEMENT RATES?

2. Why was a model of ex post facto analysis chosen when the reality is that most agencies and providers did not collect the data in the form that is being required to provide?

3. Given that this is an ex post facto dive into data that may not even exist and in fact was never before required, why designate such a constricted time frame (one month) to comply with the reporting requirements?

4. Given that this is an ex post facto dive into data that may not even exist and in fact was never before required, why choose to do this in the month of April when many agencies and providers are FULLY engaged in fiscal end-year tasks, completing other tax and reporting requirements, and most pragmatically - when all the providers are eyeball-deep in meetings to help determine levels of service for CPSE and CSE children next year?

In sum, this process is ill-timed, intrusive, burdensome, seemingly irrelevant, and deeply flawed. This is your NYS Government hard at work to make these kinds of colossally irresponsible mandates.

We plan to soar over all of this, because we know that many people whose children need help will eventually develop workarounds and find ways to access services in other ways. When schools cut access to services or when NYS cuts EI reimbursement it does not change the fact that children still need services - and we have been a community provider meeting these needs outside of the care systems when needed and through the care systems when they are available.

My deep concern is for those children and families who don't have the resources to find those other ways.

Perspectives on aging and not aging.

2011-04-20T16:36:00.004-04:00

"I love you," Kimmie's grandfather said, while gently releasing her hand and carefully pulling up the bedsheets around her thin shoulders.

"Well I love your eyes," she said back, and planted a kiss squarely on his jaw.

The grandfather gave her a wink, got up, and tipped his hat to me as he left the room. I felt a little awkward and concerned that I stepped into a personal moment, but Kimmie didn't say anything about it so we just quickly got to the business of therapy.

Kimmie was a nineteen year old young adult who had cystic fibrosis and spent many long weeks in the hospital. I got to know her pretty well because she was admitted to the hospital several times each year. She landed on my caseload after her first hospitalization and the way we divided workload kept 'repeat' patients like her with the same therapist each time.

She talked a lot about tranferring to an adult hospital but she knew her pulmonologist so well (and vice versa)that her family decided to stay as long as possible in the children's hospital where she felt more comfortable.

I didn't know a lot about CF when I started working with her; she taught me most everything that I know about the condition. My job assignment from the pulmonologist was relatively simple and straightforward: she had diminished lung capacity and frequent infections that limited her physical activity - so my job was to keep her as physically engaged as possible within the limits of her physical capacity to maintain oxygen saturation levels.

Sometimes that meant trying to get through self feeding in the ICU. Sometimes it meant playing air hockey in the playroom while standing and using wrist weights during the activity. She normally beat me in air hockey but one day I had an uncharacteristic winning streak. I assumed she was just having a bad day because the pulse oximeter was ticking down into the low 80s, threatening to alarm, so we decided to take a break and let her recover a little bit.

"I'm getting killed!" she said as she reached toward her chair. I had to steady her on the way down because she was a little winded. Kimmie's body was very frail and her trunk was stiff and rounded like a barrel. Her shoulders were in her typical position of being hunched up close to her ears and rounded forward. "Come on now Kimmie, let's not throw posture out the window," I answered back in a non-reply as I lowered her into the chair.

Then I continued, "Well usually you are the one who is killing me in this game, so it is about time I have a chance to beat you!"

I watched her O2 levels stabilize at 82 and I was glad that I wasn't going to have to get the nurse. "I don't think you understand Chris," she said. I looked over and saw that tears were in her eyes. Kimmie had soft round eyes with large lashes, and her cheeks were dimpled and puffy and always seemed a little rosy no matter how far down her O2 levels sank. "I'm getting killed. I'm dying and I can't stop it."

Kimmie's air hockey defeat apaprently underscored her inability to stand and underscored her inability to maintain her focus because she had to concentrate every bit of effort on finding a way to get sustaining oxygen into some functional part of her lungs. She used to tell me that she wished she could control her breathing so she wouldn't waste time and energy sending air down to places where it wouldn't make a difference. She was pragmatic that way, but now suddenly everything in front of her became a blurred confusion of loss, and gigantic tears welled in her eyes, dangled briefly on her eyelashes, and then splashed down heavily onto her cheeks.

"I hate crying," she said as I frantically grabbed for some tissues and handed them to her. Her tears welled and lingered and overflowed and then bounced off of her cheeks in a repetitive pattern that she could not blink away. "I hate crying because I can't see and its bad enough not being able to breathe but I hate when I can't see and can't breathe at the same time."

This was probably something that she spent some time thinking about before, I figured, based on the specificity of her concerns. Perhaps the crying loosened up something in her lungs because her O2 levels ticked closer to 85.

"I'm afraid Chris, that someday in the ICU I won't be able to breathe. Maybe I will know I am dying. Maybe I'll see my Mom and I'll cry. What if I cry and can't see when I can't breathe? What am I going to do?"

When you work around people who are critically ill or even around those who are dying or close to death you can develop some very sophisticated defenses that may not be particularly logical, especially in consideration of all the scientific facts and knowledge that go into your training. I never really considered that Kimmie was going to die, because the ICU doctors could save any person's life. Besides, she could play air hockey so anyone who can play air hockey and teach me about CF wasn't close to dying any time soon. Besides, it wasn't my job to think about that anyway. It was my job to help her find ways to do things and to stay as healthy as possible.

Kimmie got worse. Then she got better and went home. Then she got worse again and was on a transplant list. Then she got better and went home. This reinforced the fact to me that Kimmie was not going to die.

Nineteen turned to twenty and even her pulmonologist was pushing her toward an adult facility. We still played air hockey. Her shoulders got more rounded and her chest and ribs became even more stiff and immobile. Air hockey was something that she could still do. It was a point of activity in a senseless disaster of steroids, IV antibiotics,respiratory therapy, and recovery from impossible metabolic imbalances when she got bad enough to require temporary intubation.

Crying after air hockey started to become something of a ritual. "I hate it, but do you mind, Chris, that I cry after we are done?" she asked me one day. I didn't know what to say - so I offered to stop our air hockey activities if they were just making her cry. "I don't want to stop beating you in air hockey! I just want you to be sure that I can see if I start to cry." I couldn't decline the request, so instead of handing her the tissues it became my job to wipe the tears from her eyes and face if I won.

People develop different points of meaning around all different kinds of things. Kimmie had a thing about eyes and crying and being able to see. She talked about wanting to be able to see constantly. She hated when she couldn't see things because of crying or oxygen masks. I accepted it, and wondered about it because it came up all the time with her.

As I dabbed her tears one day I had to ask, "Kimmie, why did you tell your grandfather that you loved his eyes? I always wondered why you said it to him that way."

"I want to be old," she told me. "But it won't ever happen. I want my eyes to crinkle around the corners when I smile. I want to experience enough to have those happy lines on my face. Then if I cry the tears won't get stuck on my eyelashes and they won't fall on my face. They will go where tears go when you have lived long enough to have riverbeds for them to flow into."

*********************

Kimmie died that year. She was 20. The doctors couldn't save her, because no one can save you from CF. She didn't live long enough to have happy lines. I hope she didn't cry as she was dying, because I know she wanted to see. I don't know because I wasn't there when she died. No one was. She died at home in her room at night, alone.

That was almost 20 years ago. It took me a really long time to write Kimmie's story down. I'm thinking about her now because I am 45 and at the end of a long day I take water into my hands and splash it onto my face, watching drops beginning to find small patterns that follow away from my eyes. It is a gift that she wanted desperately and could not have. It is a gift that I am only now beginning to be blessed with.

Fact check: Will new EI rules really create jobs as claimed?

2011-04-14T10:07:00.007-04:00

Proposed rule changes for EI rates were published yesterday.

The main issue for practitioners to be aware of is that you will no longer bill for a 'basic visit' which in most cases consists of a 30 minute visit. Instead you will bill in 15 minute increments - but what is important to understand is that the rate you were previously paid will now apply to a base visit length of 45 minutes. That means that if you are continuing with your standard 30 minute visits that you will experience an additional 33% rate cut.

Whenever rule changes are proposed there needs to be impact statements - and NYS rulemakers have decided that cutting EI rates an additional 33% will result in increased job opportunities:

The proposed rule change for home and community services to full 15 minute billing increments may result in a minimal increase of employment opportunities as providers will have to align time spent delivering services with the time assumptions used to establish the rates. It may also provide an employment opportunity for providers of children who receive intensive services to provide a higher level of services through longer visits without incurring the cost of travel to a participant's home. Previously these intensive services may not have been cost effective or feasible to provide under the existing payment structure.

In other words they are stating that since providers will have to work 33% longer to make the same amount of money that this will cause agencies to hire more people to meet the same EI demand. Obviously the rulemakers have never directed an agency or owned a practice. I don't know how they can be so dishonest when they are writing these rules - it isn't even a matter of perspective - the impact statements are just dishonest.

What is more likely to happen is that agencies will not be able to hire therapists because no one will work for such a low rate and because there is no way for agencies to cover costs at current salary levels and at this low reimbursement. Current EI therapists and even entire agencies will bail out of the system and try to find work in other sectors - and indeed that will create job opportunities! No one will want to work in EI, so there sure will be a lot of EI jobs available.

On a serious note, this means that many children will not receive EI services - and that those families who have resources will access private resources/insurance to help themselves. Those families who do not have resources will be out of luck.

The bottom line here is that cost-sharing is realized because people who have resources will activate those resources and that saves the EI system and NY State money. However, the distribution of this cost-sharing is only an option for people who already have the resources - and if these rule writers knew anything about the demographics of the EI program they would understand that they just kicked a very needy population that doesn't have a lot of resources even further into the gutter.

Sensory integration research: Who is it for?

2011-04-13T23:46:00.002-04:00

The March/April issue of AJOT has two articles on sensory integration that are worth discussing.

The first is Verification and clarification of patterns of sensory integrative dysfunction (Mailloux, Mulligan, Smith Roley, et.al.). This article is another factor analysis study that has to be considered in the context of a number of other studies including Ayres (1989) original cluster and factor analyses that went into SIPT standardization, Mulligan's 1998 and 2000 cluster and factor analyses, and the critically appraised topic written by Davies and Tucker (2008).

I'm not sure how many street level practitioners read cluster and factor analysis studies but I don't think that most people put this on top of their reading list. I think this is because we don't spend a lot of time educating practitioners on these methods and what they mean. I personally think that these statistical models are interesting but I also understand that they have a serious fundamental flaw in that they are based on heuristic models of interpretation. In other words, in the case of the SIPT, we are trying to label conditions based on a defined set of variables that supposedly 'make up' a construct that is called 'sensory integration' or perhaps 'praxis.'

The truth is that we are using those 17 tests as a point of convenience even though we have a lot of data that tells us that there are individual problems with some of the reliability of some of those tests. On top of that problem we also have expanded our thinking into more dynamic systems models and to be honest I have no idea how you apply factor analysis inside a world of non-linear dynamics. I guess I know enough to know that I don't have the math background for this kind of thinking.

Maybe it isn't a math problem as much as it is a philosophical problem - and that brings us around to the heuristics problem. I just can't help thinking that we are making contrived conclusions that might not really be a reflection of a full data set. If you go through and read all the factor and cluster analyses and the interpretations of these studies that have been done you will see that factors and clusters have been identified, then clarified and redefined, and in this most recent study we have come full circle to claiming consistency with the orginal conclusion of Ayres.

If there are any street level people reading this stuff they are probably wondering:

1. So which is most 'true' - the Ayres data set or the Mulligan data set or the interpretation of Davies/Tucker or now the Mailloux/Mulligan/et.al. data set.
2. In the 20+ years of variability on conclusions has any of this made a difference anyway to how clinicians are practicing?
3. Is this even in sync with the notion of occupation based practice?

I am concerned that decisions will be made for restandardizing the SIPT based on the heuristic interpretation of these data sets. Since we haven't done a historically good job of even definining what SI is that this is kind of like building a castle on a sand foundation.

All of this leads to the overwhelming question of WHO CARES and WHO IS THIS REALLY WRITTEN FOR ANYWAY? This research has no application to practice. My concern is that in the next 20 years someone else will decide to be an eigenvalue purist who thinks THERE MUST BE a 6 factor solution and they will contribute to another 20 years of gear spinning. Will this bring our practice further along?

******************
On to the next article...

Parham, Smith Roley, May-Benson, et.al. wrote Development of a fidelity measure for research on the effectiveness of the Ayres Sensory Integration Intervention (ASI). This is a long anticipated article that developed a fidelity measure for use in research on ASI. I understand that this is not a practice tool, but the point is to more clearly operationalize our terms and definitions for research - which in theory is supposed to eventually inform our practice.

Structural and process elements were identified but only process elements were validated. Unfortunately, the only people who can tell you if you are appropriately incorporating the process elements are a handful of specially trained experts who defined what the process elements are. This kind of drives the whole fidelity instrument into a ditch of confirmation bias - and really I just don't know what to say about it from that point.

Structural elements are identified but were not validated. Presumably these would be elements that could be more easily confirmed by untrained people. The problem with the structural elements is that you need to have post professional training in SI, there are restrictive space and equipment requirements, and there are requirements for levels of communication that are rarely achieved in many practice settings.

These elements make ASI as it is described as being apropos of nothing, because if only a couple experts can tell you if you are doing it, and if your practice setting precludes the structural elements - then a fidelity measure won't matter much because the model is not applicable to the realities of street level practice. In my thinking, these two articles do not contribute to practice and demonstrate quite clearly that we should re-work the model until we come up with something that reflects actual practice and perhaps incorporates a broader occupation-based framework. While we are at it we might drop those sensory processing interventions that have not been supported by research.

References:

Ayres, A. J. (1989). Sensory Integration and Praxis Tests. Los Angeles: Western Psychological Services.

Davies P. L., Tucker R.(2010) Evidence review to investigate the support for subtypes of children with difficulty processing and integrating sensory information. American Journal of Occupational Therapy 64, 391–402.

Mailloux, Z., Mulligan, S.,; Smith Roley, S., et.al. (2011) Verification and clarification of patterns of sensory integrative dysfunction. American Journal of Occupational Therapy, 65, 143-151.

Mulligan S. (1998). Patterns of sensory integration dysfunction: A confirmatory factor analysis. American Journal of Occupational Therapy, 52, 819–28.

Mulligan, S. (2000). Cluster analysis of scores of children on the Sensory Integration and Praxis Tests. Occupational Therapy Journal of Research, 20(4), 258–270.

Parham, L.D., Smith Roley, S., May-Benson, T.A., et.al. (2011) Development of a fidelity measure for research on the effectiveness of the Ayres Sensory Integration Intervention, American Journal of Occupational Therapy, 65, 133-142.

Early Intervention Update - 3/31/11

2011-03-31T18:57:00.003-04:00

I want to encourage people who are interested in updates on EI and other issues to follow our Facebook page at http://www.facebook.com/ABC.Therapeutics

I'll be posting brief updates there more often than I update the blog - which I generally reserve for longer rants or conversations. Blog traffic has spiked the last couple days so I know there are a lot of people out there looking for information.

The best information that I have available currently is that Senator Ranzenhofer's office confirmed to me that the EI rates have been cut 5%. In brief Facebook exchanges with NYSOTA they are also reporting the same information. A digital news service that covers NYC news is also reporting similar information. I spoke with people in the NYSDOH and EI programs specifically and they are keeping their lips sealed for now.

A 5% cut is better than the originally proposed 10% cut, but it will still create additional challenges for providers who are still accommodating to the 10% cut that occurred last year.

Right on the heels of all this news breaking I received an email from Public Consulting Group, Inc. (PCG) has been contracted by the NYS Department of Health to coordinate and implement a provider cost reporting system for the NYS Early Intervention Program. It involves filling out cost reporting forms and attending webinars on how to fill out their cost reporting forms - real exciting stuff that providers generally get excited over - right?

I called them up and asked what they want cost data on and they told me that it was to help provide data to stakeholders (I suppose that would include the legislature) about what the actual costs of providing EI services are. I fully understand the importance of cost reporting but to be quite frank it is rather ironic that they are gathering information on cost reporting AFTER cuts have already been made that are crippling ability to hire, train, and retain qualified professionals for the EI Program.

The consultant that I spoke to from this group was very pleasant but I gave her a 15 minute speech on the silliness of ex post facto cost reporting. I suggested that a better way to spend time would be to do a deep dive into the recently published early intervention report to the legislature. This report has shocking information about the absolute ineptitude of NYS in collecting money from third party insurers in their already-existing cost sharing allowances.

The report outlines an 85% denial rate that exists because our state government can't figure out how to cost share with commercial insurance - and the shocking 22% denial rate from our own Medicaid program! The primary reason for denials is not even because of exclusionary coverage rules or timely filing problems - but because providers do not 'participate' as credentialed professionals in the insurer's networks. That is a pretty lame reason to not get paid - and is so easily fixed by simply requiring that providers to EIP already be credentialed with Medicaid and whatever private/commercial entities serve their geographic area.

A tremendous amount of revenue is lost because of this - and rather than fix the problem I suppose it is faster to take an axe and lop off 5% of the reimbursement to providers. This has to be the laziest fix to a budget problem that I have ever seen before.

NY State doesn't know how to get paid for the services that are provided. Any private practitioner knows that you can't function if you don't get paid and now that lesson is about to be learned on a much larger scale across the state. You can't deficit fund forever.

One big part of the solution to all this is for everyone to learn how they can engage their own representatives and start talking about cost sharing through private insurance as a more reasonable model to support the costs of the program - unless you all know how to dodge the next clumsy swing of the budget cutting axe.

I guess that the state doesn't like Medicare rate cost reporting and the long-established formula that is already in place that has previously served as the basis of the EI rate. Maybe someone's friend owns this consulting group - I really don't know. I can't imagine why NOW is the time to do cost reporting - now that we are all about to experience another cut to reimbursement. Usually you might expect that they would make everyone do some little song and dance about cost reporting BEFORE they slash rates. That gives people the illusion that their input actually made a difference, a la the much exalted Medicaid Redesign Team. How funny is it that they slash rates first and then ask people to do cost reporting second?

Don't wait for NYS to figure it out - they are off on this new tangent that is best summed up with the phrase 'Ill-Timed.' Only government could be this dysfunctional.

Thoughts about use of seat cushions to promote attending behaviors in children

2011-03-25T12:10:00.005-04:00

I encourage everyone to open up the current American Journal of Occupational Therapy and read 'Effects of therapy cushions on classroom behaviors of children with autism spectrum disorder.' This is a fantastic article that looks at the issue of whether or not seat cushions were effective at promoting 'in seat' and 'on task' behavior.

I think this is a fantastic study because it take a very common OT intervention and puts it to the test. For many years OTs have been dispensing seat cushions to children in classrooms based on the thought that the seats provided sensory stimulation that busy children were 'seeking' or that the seats would demand a postural reaction that would promote attention and erect sitting. This has been done for so many years in so many settings that it becomes a common request from teachers who don't know what to do with fidgety children. How many OTs hear the request "Can we try to see if sitting on a seat cushion will help?"

We have precious little evidence that seat cushions do anything at all for children - and the lack of evidence is reflected in the fact that this intervention is barely mentioned in some common pediatric occupational therapy texts. However, given the formulaic and mythical popularity of the intervention you might think there would be more research!! This is good reason to celebrate this article - because it provides a great first step in researching issues like this.

This issue was a large enough concern in our practice that we recruited some local OT students to help us do an in-house study on effectiveness of HowdaHug chairs in promoting attention for preschoolers. Our study found that the chairs were most effective for promoting visual attending and facing the teacher. This was most likely attributed to the physical design of the seats that provided a measure of physical confinement as opposed to any sensory benefits that were offered by the chairs.

The study in the current AJOT used a different measuring approach with interval recording. They had similar difficulties with the fact that issues in the natural context could not be easily controlled, but they did an excellent job of operationally defining their parameters. Overall their design was very clear and well-explained.

The study did not indicate that there were any substantial changes in sitting or task-related behavior when seated on cushions. The authors contrast this to a previous study where children demonstrated improved attention while seated on a therapy ball and suggest that the ball is more effective because it demands a more complex postural reaction from the child.

My takeaway from all this is that the objective of 'meeting sensory seeking need' may not be supported by research. In our own study we found that actual physical constraint was the primary reason for improving attending. This study does not support the hypothesis that attending will improve by allowing for sensory seeking behaviors/needs to be met in the chair. What seems to be evident is that seating that either controls extraneous movement or that demands controlled postural reactions may be most effective in promoting on task and in seat behavior.

The best part of this is that these conclusions have the best face validity. It is logical that attending would improve under control and demand contexts. It is not logical that attending would improve by allowing children to move more on an unstable seating surface. In anticipation of the comment "aren't therapy balls also an unstable surface" I offer this for thought: despite the ball being an extremely unstable surface, it makes the greatest postural demand on control. If you fail to activate a postural response on a ball you will likely fall right off. The seat cushion provides for movement that is supported by a stable surface - and thus there is less postural demand, decreased likelihood of falling off, and only the opportunity to increase fidgeting!

Congratulations and thanks to Caroline Umeda and Jean Deitz for excellent work that has real clinical application!

Reference:

Umeda, C., & Deitz, J. (2011). Effects of therapy cushions on classroom behaviors of children with autism spectrum disorder. American Journal of Occupational Therapy, 65, 152–159.

NYS Budget Update - Impact for Early Intervention

2011-03-19T11:26:00.004-04:00

If the number of hits to this blog regarding early intervention and the NYS budget are any indication - this is a MAJOR point of concern for therapists. Our traffic has been influenced heavily by this issue in the last month. Also, it is not just NY traffic - people around the country have been watching the proposed budget cuts to the NYS Early Intervention Program.

This week the Senate and the Assembly each put forward their own modifications to the budget and the budget reconciliation process begins. Click on the links to get to the respective budget proposals.

These documents don't always contain all the actual legislative language so it is sometimes difficult to precisely understand where specific budget lines are reflected. It appears that in the Senate version they are 'concerned' about the EI cuts and they are waiting on information about fund availability to see how they can 'minimize the impact of the Executive Proposal.' The Assembly version is more clear in that it 'rejects provisions to reduce the EI rate 10% and require providers to bill Medicaid directly.'

Insurance companies can rest easily, however, because in both the Senate and Assembly proposals they reject the requirements for expanding the mandate for commercial insurance companies to cover the Early Intervention Program. It is unfortunate that legislators didn't recommend a more reasonable cost-shifting plan that respected issues like network status of the provider, place of service, and prior authorization. Instead, they apparently over-reached by requiring a blanket mandate - and I can't really say I would support a blanket mandate either. It is reasonable for the insurance companies to have some typical process of utilization management but all or none thinking in this case will skew to the side of nothing happening. Big win for the insurance companies - big loss for the taxpayers. Blame the politicians for this one by being lazy and thinking a heavy governmental hand would be an effective strategy.

I am aware of several efforts to write in to legislators opposing the reimbursement changes. I am also aware of what appears to be a proto-union group that was able to get an Assembly bill introduced that would prohibit additional reductions to early intervention rates. I have corresponded with this group's leader and expressed some concerns about groups or professionals banding together (formally and informally) to set rates or to have the appearance of colluding about rates. I also have some personal philosophical concerns about the concept of collective bargaining against government entities. I was told that this was not a proto-union effort but this is one of those situations where if it looks like a duck and quacks like a duck it is probably not a rabbit.

Actually I admire this group's intent, and the group is comprised of parents and not only professionals, but I still think that this is like Little League playing at Yankee Stadium.

The lesson in all of this is that the way to effect change is to take the two following approaches:

1. Spend more money on lobbyists and become more active in the political process as it stands.

2. Instead of trying to be a break wall against the need for reform, try instead to ride the wave into another direction. In this case, it might mean helping families find the help they need from sources OUTSIDE of government mandated programs. That's a big mindset change against what many people perceive as an entitlement culture that exists in this state.

A critical look at goal writing in school-based occupational therapy

2011-03-14T16:31:00.005-04:00

For those who are not aware, IEP Direct is a proprietary Internet-based software package that many school districts use for IEP writing. One value of this kind of tool is that there is more uniformity and subsequent adherence to regulation when IEPs are created in this format. However, a serious negative is that therapists often over-rely on the canned goals that are part of the drop down menus in the software.

I am not sure who writes/approves the canned goals in IEP Direct but some of them are rather silly.

Being a former full time educator myself I know that academic programs spend quite a bit of time teaching students how to write appropriate goals that are both functional and measurable. Something seems to happen between the classroom and practice because the quality of many goals that I see written for children in school settings is very poor.

This is not new but is a perennial rant because the situation does not ever change. Programs like IEP Direct have now compounded the problem because it perpetuates the thinking that "if the computer has it listed as a well-written goal then it must be ok."

The offending goal today is:

Joey will demonstrate a consistent hand preference and appropriate grasp on a crayon to trace basic shapes and letters using correct sequencing with 1/4" accuracy.

The problem with this goal is that it attempts to measure too many things with too little specificity. There are at least six goals in this single goal:

Joey will demonstrate a consistent hand preference
Joey will use an appropriate grasp on a crayon
Joey will trace basic shapes
Joey will trace basic letters
Joey will trace with correct sequencing
Joey will maintain accuracy within 1/4"

Also, what is an appropriate grasp? What shapes? What letters? What does 'correct sequencing' mean?

My favorite point of silliness about this goal is accuracy within 1/4". Here is a picture of the letter 'A' drawn correctly and also drawn within 1/4" accuracy. Obviously, the absurdity scales when the demand for writing within a more confined space increases - but this is a scaled size that a kindergarten student might attempt:

Would you feel as though your child had achieved this goal if they produced a letter that looks like the 'letter' on the left??

I would like to encourage school-based therapists to be a little more thoughtful when writing goals or when clicking the silly drop down menu options when writing IEPs.

I promise all practicing therapists that parents are getting very tired of trying to understand what the goals mean and how they are supposed to know if a child is really making appropriate progress.

Narrative analysis and meaning making in the face of vicious cycles.

2011-03-02T15:08:00.009-05:00

Melissa is a happy three year old. She smiled brightly as she played with the 20 year old bead and wire toy in my waiting room. I am amazed at the durability of this toy that was originally a favorite of my oldest daughter. It has been played with by thousands of children over many years. Melissa talked quietly to herself as she slid the beads along their paths. Some of those paths are rather uniform and follow a predictable and simple geometric trajectory. Other paths twist, turn, climb and dip unexpectedly. All of them begin on one side of the toy and end on the other side of the toy.

Melissa's grandmother usually brings her to occupational therapy but her thirty-something year old father also began coming to therapy sessions. He was recently released from prison and a mandatory rehabilitation program. He has a long and repetitive history of substance abuse and criminal behavior. No one knows where the mother is.

Based on conversations we have had, Melissa's grandmother is heartbroken. That has nothing at all to do with her love for her granddaughter - but is more reflective of the love for her son who has disappointed her at every possible turn of his life.

At the end of the session cherubic Melissa hugged my leg goodbye and smiled as she grabbed her grandmother's hand and walked down the stairs toward their car. The father watched the scene as if it were a movie playing out in front of him. I saw pain and worry in his face as he told his mom that he would join them shortly.

After a moment we were alone in the waiting room. "Dr. Chris," he haltingly asked and worried, without much eye contact. "Is it too late for me to connect with my child?"

The question landed heavily on my shoulders and I felt the struggle in my knees as I shifted my efforts so I could find something meaningful to say.

"Of course its not too late" I answered automatically, not knowing exactly where the answer came from. I paused as I heard the reverberation of the assurance in the waiting room. I wondered if I was dispensing fact, or opinion, or maybe it was just hope.

I told him something about the importance of continuing to participate in his daughter's therapy and medical appointments. I told him that constancy is important to preschoolers and that everything he did on a daily basis with her was important. I said some other things.

It was hard to tell if my assurances had any chance of breaking through the curtain of fear and the sense of failure that surrounded him. He heard me, I think, because he shook his head in acknowledgment of what he already knew he had to do - and in some shame of how he had failed in his responsibilities up until recently.

I believe in redemption but I know it does not happen frequently. As he ran with an urgency out of the waiting room to his daughter I wondered if he would find it.

I turned to tidying up the waiting room and couldn't shake myself from the interaction. I looked at the toy, and some of the beads hung suspended in the middle of the wires along their paths. As I moved the toy to the table I pushed all of the beads so that they were neatly arranged at the termination of their paths, because that is where I willed them to be.

I moved those beads, even though I know it really isn't that easy. But I wish it were.

Dismantling the Early Intervention and Special Education Program through back door Medicaid regulation

2011-02-16T15:56:00.007-05:00

I have recently blogged about the State Plan Amendment that involved a $540 million settlement paid from NY State to the federal government because of Medicaid fraud. In the wake of the settlement, the Office of the Medicaid Inspector General has developed guidelines that municipalities are trying to understand, and in turn these guidelines are trying to be followed by local school districts and providers.

The current street level problem is that documentation requirements for services are being applied retroactively - and that causes even greater amounts of ineligible billing. In a mad rush to understand and comply with new requirements (I am hesitant to call them rules or guidelines) the locals are desperately looking for guidance on how they are supposed to provide services, document services, and bill for services.

Inspired people (like me) went to more than one training session and were shocked to find out that there were inconsistencies between the information that was presented at the trainings. The NYS Education department responded to the confusion by publishing two Q&A documents that attempt to clarify the training that every service provider in the state had to attend. The Q&As are the only official documents outside of the handouts provided at the mandated training.

Questions still persist because the requirements are confusing. Unfortunately, OMIG is no longer answering questions and is referring everything over to State Ed. I am not sure who is in charge of answering questions at State Ed but some rather odd information is being fed out of that department. One thorny issue had to do with what supporting documentation was needed for OTA supervision.

The State, as a de facto third party payor, has the right to require whatever they want to require - much as private insurance companies or worker's comp, or Medicare already does. The problem is that the information that is being disseminated is often incorrect and sometimes incomprehensible. Most recently, a municipality undergoing OMIG audit was asked to produce documentation of OTA supervision. The municipality responded by providing copies of co-signed notes, co-signed quarterlies, and other interim notes that were written by the OTR. There is no rule or regulation that dictates the EXACT nature of these notes - just that it is occurring on a regular basis to review treatment and foster professional development of the OTA. In my estimation the municipality provided appropriate documentation - but OMIG pulled out what appears to be some pages from an old NY City Medicaid billing manual that requires even more in depth documentation. The municipality forwarded this to the occupational therapist, who at that point felt under the gun for not providing the correct documentation. The municipality is not a regulator of any profession and is relying on State Ed or OMIG to provide correct information - so now the municipality thought that the OT wasn't doing the right thing!

Since when did an old NYC Medicaid billing manual supersede State Ed Law and previous documentation requirements of the Medicaid program?? The bizarre part of this all is that the presumed pages of the NYC Medicaid billing manual also have a requirement that OTs be registered by AOTA. I am not sure of the last time that AOTA registered anyone, since it is a voluntary membership organization. Back in the early 1990s AOTCB which was loosely connected to AOTA, provided certification for OTs and OTAs - but that function was taken over by the renamed NBCOT which spun off of the professional association and took full independence as a credentialing agency OVER 20 YEARS ago! Someone needs to update the NYC Medicaid billing manual, apparently.

Someone also has to stand up and ask why an old NYC Medicaid billing manual became the governing document for how to document services.

Also, these strange requirements out of an old NYC billing manual are being retroactively applied to providers across the state. People functioning in the corners of NY were not following the requirements of some arcane and outdated NYC billing manual - and the 'non-compliance' is being mathematically applied across the 'universe of claims.' So now old NYC billing requirements are being randomly applied in areas around the state that never before were exposed to these requirements. They aren't BAD requirements in themselves - but they were never before required.

The bottom line is that the municipalities will not be paid for many of the services that were provided because therapists in Niagara Falls did not think ahead and follow the old NYC Medicaid billing manual. That is insane. It is one thing to decline billing based on fraud - but it is quite another matter to apply some previously unknown standard to decline legitimate claims.

The point here is that people in OMIG and State Ed are just making this up as they go along. That places municipalities in the middle, and it places providers at the bottom of the pole trying to figure out what to do. I don't even know where it places the recipients of services - they are just lost in this whole mess.

I am sorry to report this - but it all gets worse. Paying back the money that was fraudulently billed is understandable - but now we are forfeiting money that should be legitimately paid on legitimate services. The Settlement Agreement signed by the Wizards of Albany effectively throw away your 8th amendment rights - so you are not secure against unreasonable fines and penalties. This is highly amusing to me - but how can a State toss out the 8th amendment rights of its populace? 'Excessive' fines and punishment takes on a very different meaning when it is applied to the State as opposed to an individual. Is anything 'excessive' when the State has unlimited revenue (your tax dollars)???

The dismantling of early intervention by making new Medicaid policy around the edges of the problem is a 'hiding in plain sight' issue, but to understand what is happening to early intervention you need to do a deep dive into power, control, and politics.

Counties are required to follow the requirements of OMIG if they want reimbursement, and they feed the requirements down to locals. The locals do not represent a politically connected constituency. Local providers are individual people who are often contractually related to municipalities. They are not represented by Unions, and their interests are only partially represented by their respective trade associations - none of which are particularly strong or powerful in Albany terms. To make matters worse, there are no formal lines of communication and coordination between the trade associations.

You can be absolutely certain that if a giant multi-million dollar settlement for Medicaid fraud came down on the heads of hospitals that HANYS would have found a way to see the 'draft' document and they would have filed an Article 78 proceeding or maybe even a lawsuit to make sure their interests were protected. There is no such political power among preschool or early intervention providers - and that made the constituency very easy pickings for the U.S. Department of Justice and the Wizards of Albany who were willing to have you all to 'take one for the team.' I am using polite terminology.

This was all predicted nearly six years ago. Still, let me assign blame all around because if we understand our role in the problem then maybe we can adjust our priorities and make sure we don't end up with this happening again.

1. I blame myself, because despite my blogging and ranting about it I was largely ineffective in communicating the issue to relevant stakeholders who might have helped to engage the problem.

2. I blame all the people who label this post as 'boring' and write me emails wondering why I don't write more about treatment ideas. This is a population of therapists that is too large and they need to understand that lack of political engagement is jeopardizing care to a very vulnerable population. Also, jobs are now at stake - that may wake some people up. I especially worry about the OTA and PTA population, because based on new burdensome requirements there is significantly less reason to hire or employ these professionals.

3. I blame educational programs that have ultimately failed to educate therapists on the importance of policy on practice.

4. I blame all the trade associations who needed to see this as a very top priority and neglected to give this issue the attention/resources it was due.

5. I blame municipalities for not fighting back. I do not know if a municipality has standing to contest an agreement made by the State with the US DOJ, but on principle alone they should have been less passive.

6. I blame politicians and lawyers who brokered all this and actually understand this whole issue really well. They do not have the courage to address problems directly so instead they take aim at a disenfranchised group of service providers who have no political clout to do anything about it.

All of this will save NY State untold millions of dollars. This is something that is needed - but it will all happen on the back of our educational system for disabled children. There is no question that we needed reform but of all the places to squeeze money out of the system is this really the place to start?

The rocky start to my pediatric injury prevention career

2011-02-15T15:22:00.007-05:00

I don't frequently blog about my interest in pediatric injury prevention because our Facebook page is a much more convenient way to share information and messages about that topic.

Today I thought I would tell a quick story about one of the driving events that got me thinking about injury prevention. The thought was prompted by a story on one of my favorite websites, www.safekids.org. They have a feature on furniture tipovers that reminded me of an incident that happened to my son when I was a brand new parent over 20 years ago.

My son was nearly three years old and a very active toddler. I was watching him play in the fenced in back yard and he had his little toys, the family dog, and a toddler sized slide to keep him busy. It was a safe environment, I thought.

He managed to fall off the toddler slide and immediately began crying that his leg was broken. Knowing that toddlers are frequently right when they use this language, I splinted his lower leg and rushed him to the hospital.

Somehow his fracture was a spiral fracture, and this is commonly associated with a twisting type of force applied to the limb. I couldn't really see how he twisted his leg when he fell and my description of the injury didn't match the x-ray. I spent the next couple hours telling and re-telling the story to multiple doctors, nurses, social workers, and just about anyone else they could think to send over to me. I appreciated that they wanted to rule out abuse - but it was scary being on the receiving end of all those questions.

For the inspired, here is an interesting case discussion about tibial spiral fractures in children.

Anyway he was casted and sent home. The doctors put him in a full leg cast because they didn't want him to attempt walking. They didn't understand my son, who was not about to let something like a long leg cast stop him from getting around!

For the first day it was mildly entertaining to watch him attempt to stand, but simple biomechanics placed him at a severe disadvantage. After several hours of trying, I thought he just gave up. I was wrong.

While I believed that he was safely watching television with his cup of juice, snacks, toys, blankets, and everything else safely within reach, I now realize that his toddler mind was just spinning through opportunities and possibilities. When I wasn't looking, he dragged himself over to the entertainment center and attempted to pull himself up using the glass door. Here is a picture of what the entertainment center kind of looked like:

Thankfully the entertainment center was bolted to the wall, but he managed to pull the glass door directly off of its hinges, careening him backwards - causing the door to hit him squarely in the forehead and opening up a rather large gash above his eye. I rushed him to the hospital again.

He was pretty traumatized, and required seven stitches to close the wound. My confidence in safe parenting aspirations was functionally shot - it was a horrible string of misfortune. I thought the worst part was going through another two hours of questioning by the hospital workers who really did not believe my story - but actually it was even worse watching him placed in a velcro restraint board so he would be still enough for them to get the stitches in. It was horrible.

-----------------------------

These events, when my son was nearly three, launched my interest in pediatric injury prevention. I didn't incorporate this interest into my occupational therapy work until several years later when I had the opportunity to help develop a safe transportation program for children who were being sent home from the hospital in spica casts.

Anyway, you can 'Like' our Facebook page if you are interested in receiving periodic information about pediatric injury prevention!

Narrative perspectives on adolescents who have autism spectrum diagnoses

2011-02-14T15:21:00.003-05:00

I read an article the other day that gave a lot of statistics about how teenagers who have autism spectrum disorders receive significantly less case management services, therapy, and medical care after they leave high school. That does not surprise me. Then earlier today a colleague was asking about interpretive phenomenology. That made me think I should write down this story. It gives a different perspective on the problem that moves a little beyond the statistics in the article referenced below.

___________________________________

Cindy's mom called the other day, and I was pretty certain she was calling about concerns with her young preschooler - who is 4 years old and has PDD-NOS. I evaluated Cindy about a year ago and helped the family engage their local school system for services.

Instead she was calling about Emily - and I recalled that she told me about an older daughter who also has an autism spectrum diagnosis. Her older daughter graduated from high school last year and now was not getting any services and was not enrolled in any programs. The mom wanted to know if I could help.

Emily is an eighteen year old young woman who walked into the office on impossibly high heels, chewing gum, and grinning broadly because she only has the cares of a teenager. She was using IPod ear buds which her mom had to ask her to remove, "You know it is rude to have those things in when you are meeting people!" her mom chastised. She seemed like a very typical teenager, but perhaps just less emotionally and socially sophisticated.

Emily recently graduated from high school after a very long and not always successful academic career. Her curriculum was modified so she did not receive a Regents diploma - and she reportedly was not eligible for participation in any post-secondary education unless she took and passed a GED examination. "I was just tired of school," she explained. "I just thought it would be good to take a break." She never participated in any pre-vocational programs and never had a job. She is able to read on a third grade level and can complete simple math problems. She has a lot of orthopedic problems with her feet and knees from years of toe walking. "The high heels were her idea," explained her mom. "She figured that if she wore heels that people would stop asking her why she walked on her toes." It wasn't a bad idea on its surface, actually, but years of toe walking were causing abnormal biomechanical stresses and severe deformities in her feet.

The plan to stay home and take a break sounded relatively reasonable to me - but I also know that a stay-at-home teenager wears thin on parents pretty quickly. It took around 3 months for the family to figure out that talking a break might not really be the best idea.

The problem that they now faced though was that there was no interface into any care systems. The school system was all too happy to wash its hands of the 'problem' of having to develop a transition plan. The family wanted a break and did not want a referral to any programs. That meant less work for the school - and they were very quick to oblige.

I understand that the family has a right to decline services, but it is unfortunate that there was not a better safety net in place that ensures some degree of continuity of care. The problem with this approach taken by the school is that it is just kicking a can down the road. When the time comes for referrals to be made there are no guide rails on the road for this family. There are no systems in place. There is just Emily, who has never taken initiative because the system does not encourage it, suddenly adrift in a very big world.

Emily spends her days listening to music, watching television, and accompanying her mother on errands. She doesn't have any friends. She has a thought to be a fashion designer someday. I'm not so sure how that can happen.

In addition to the foot deformities Emily has severe knee, hip, and back pain. "There isn't much that relieves the pain, except rocking on my back." With a quick "Do you mind??" and without waiting for any answer she lowered herself onto the floor, re-inserted the ear buds, extended her spine into an opisthotonic position and began rhythmically rocking back and forth in her own world as the music blared in her ears.

Emily did not seem to notice or perhaps care that other people in the clinic were watching.

The parent continued talking without pause as Emily remained on her back, rocking back and forth on the floor of my clinic. She was worried for Emily's future, worried about Emily's leg and back pain, and worried about whether they made the right choices as she was leaving high school.

As I listened intently to the parent and observed the confused reaction of people watching Emily I wondered where to possibly take the first movement toward a solution. It is my job to help solve these problems.

Emily rocked and rocked.

Reference:

JAMA and Archives Journals (2011, February 7). Relatively few young adults with autism spectrum disorders receive assistance after high school. ScienceDaily. Retrieved February 14, 2011, from http://www.sciencedaily.com /releases/2011/02/110207165506.htm

NY State Early Intervention Program Changes Proposed in 2011-2012 Budget

2011-02-01T23:23:00.004-05:00

Here is information from Governor Cuomo's 2011-2012 proposed budget. You can find supporting documents and presentation at http://publications.budget.state.ny.us/eBudget1112/fy1112littlebook/index.html

I have BOLDED the proposed budget information and italicized my own comments:

Several changes are suggested for the early intervention program that provides services to children aged 0-3 who have qualifying conditions or developmental delays.

• Recalibrate Early Intervention Rates. To make the cost of Early Intervention more affordable, a variety of changes will be made to payments for Early Intervention providers. These include the following:

- Rate Reductions of 10 percent for Early Intervention. A 10 percent across the board rate reduction will be applied to all Early Intervention service rates. (2011-12 Value: $11.1 million; 2012-13 Value: $24.3 million)

n.b. a 10% rate cut was enacted LAST YEAR. It will be interesting to see if the lower reimbursement rate drives providers out of the program. That may be the actual intent. Fewer providers means fewer reimbursements.

- Restructure Early Intervention Billing Practices. Providers of Early Intervention that receive more than $500,000 in Medicaid revenue annually will be required to directly seek reimbursement from Medicaid and private insurance prior to seeking payment from municipalities for these services. (2011-12 Value: $0.5 million; 2012-13 Value: $1.9 million)

This is a cost shifting technique that has significant implications for large providers. Many are not equipped to handle Medicaid or private insurance billing and have no experience in this area. There will be a steep learning curve for agencies who will have to learn how to navigate these systems. Furthermore, there are delays associated with getting reimbursements from these systems and that may have a significant impact on the cash flow and financial health of the larger agencies.

- Maximize Commercial Insurance Reimbursement for Early Intervention. Insurance companies will be required to pay legitimate claims for Early Intervention Services. Currently, only $13 million, or 2 percent of total gross program costs are paid by private insurance companies, although over 40 percent of children enrolled in the program are covered by private insurance. (2011-12 Value: $0 million; 2012-13 Value: $24.6 million)

This is another cost shifting technique, which has merit but there are significant problems in implementing this. Some municipalities are encouraging providers to become 'approved providers' with local insurance companies so as to allow for recouping costs from the private insurance - but the municipalities have absolutely no experience in knowing how to negotiate fair and reasonable rates with the insurance companies. In one County where we work we were asked to become an EI provider with an insurance company and the proposed reimbusement rate sheet was less than half of the prevailing rate that the same insurance company pays me to see people privately in my office. I refused to sign the contract because of my concern that a day would come where I would have to bill the insurer directly for EI services (as stated above!) and I would be 'locked in' to a substandard reimbursement structure. After refusing to sign a contract for well over a year and after many attempts at educating the municipality on the prevailing wage for therapy sessions, the insurance company finally adjusted the reimbursement for EI to appropriate community standards. The problem here is that the municipality does not know anything about prevailing reimbursement standards and the insurance company was quite adroitly trying to pull a fast one on the municipality. I am still waiting for a thank you letter from that municipality - I believe that I saved them several hundred thousand dollars annually by educating them on prevailing reimbursement rates and by holding out on the contract until the insurance company adjusted the rates accordingly.

- Recover Early Intervention Overpayment for Medicaid Transportation. Achieve savings due to recoupment of $6.2 million in the State’s overpayment for Medicaid transportation costs. This proposal will recover the overpayment from counties. (2011-12 Value: $6.2 million; 2012-13 Value: $0 million)

- Modify Early Intervention Service Coordination Rates to Use Capitation. In order to achieve programmatic efficiencies, capitated rates will replace the current methodology of billing in 15 minute increments for service coordination. Service coordination will be paid at a single rate per event or per month regardless of the amount of time spent managing the child’s case. (2011-12 Value: $0.3 million; 2012- 13 Value: $0.9 million)

- Bill Early Intervention Services in 15-Minute Increments. Fifteen minute increment rates will replace variable unit increment rates (basic and extended). Currently, basic visits are for up to 59 minutes of contact time with a child and an extended visit is for 60 minutes or more. (2011-12 Value: $1.6 million; 2012-13 Value: $6.2 million)

This has already been implemented in 2010-2011. This allows them to be on an encounter-based billing methodology that is consistent with third party payers, but there is a rather steep learning curve for all of the providers - most of which are not accustomed to operating in a medical billing context. They have not yet started reimbursing providers on this encounter based system - perhaps that is next?

- Revise Early Intervention Rates to Update Wage Equalization and Transportation Factors. Rates for home and community-based visits will be revised to reflect updated wage equalization factors that account for salary differences across the State. In addition, other changes to the prices will be made to adjust travel time assumptions which are assumed in the rates. (2011-12 Value: $0.9 million; 2012-13 Value: $1.4 million)

It will be interesting to see what this actually means. You can be sure that upstate people will cry foul if their rates are cut more than downstate - based on cost of living factors. The rates are already geographically adjusted so new adjustment formulas may be suggested.

-----------------------------

The sounds that you are hearing are the beginning cries of special interest groups who will do anything to avoid these cuts. The need to cut is real - and some of these suggestions are helpful. I am disappointed that more was not suggested about implementing better utilization management and setting entrance and exit criteria for the program. There is cost savings that will be realized by across the board slashing - but this is not a particularly thoughtful way to enact reforms. You can be more precise with a scalpel than you can with a hatchet, but perhaps the fiscal crisis is so severe that the Governor does not care much about making nuanced decisions and adjustments.

Comments made at the NYS Medicaid Redesign Public Hearing

2011-01-19T18:15:00.003-05:00

I was impressed with the good attendance at the public hearing and the attendees represented a Who's Who of Health Care and Human Service Providers in WNY. There were CEOs from most major hospitals, directors of community service programs, community activists, and consumers. Their interests ranged from emergency room care, medicaid transportation, primary care providers, hospital and nursing home care, residential programs for people who have developmental disabilities, mental health agencies, substance abuse agencies, and so many more.

I was deeply saddened that I was the only person there who talked about Medicaid in education and early intervention.

These comments were hashed together from old blog posts and other rantings:

My name is Christopher Alterio and I am a pediatric occupational therapist. Thank you for the opportunity to provide information from a street-level provider's perspective on the Medicaid program and funding for early intervention, preschool, and school special education services.

No one questions the need to reform Medicaid, but I am calling for a scientific and evidence based process to be used when reforms are being implemented.

Reform is hard but reform can be good when it is done correctly. The problem with recent efforts of cost control are that reforms are being driven by political expediency and to satisfy legal settlements. Recent cost controls have included a 10% pay cut to early intervention providers, removing minimum service requirements for some therapies, and allowing for higher student to teacher ratios in special education classes.

The problem with all these changes is that there is no evidence that indicates this is the best way to reform or modify the system. This is pure knee-jerk reaction to a budget shortfall and has nothing to do with best practices. So, as we all continue to pay for waste, fraud, and abuse throughout the system - our elected officials are making cuts to budget lines without any apparent regard for evidence. Also, these reforms are being made within the regulatory and rule making process that has some procedural safeguards for public participation but it does not seem that input into that process seems to make any difference.

Our special education system and its funding mechanism is broken and now we have a real chance to improve.

I believe that this particular situation provides an opportunity for districts to begin looking at their models of service provision and see how to provide services more efficiently. That includes setting appropriate entrance and exit criteria for related services, adopting evidence-based or RTI-type models for educational intervention, and improving team building to ensure that services are reinforced in a transdisciplinary way throughout the curriculum. All of these strategies would help improve the efficiency and also the quality of special education services. They would also by design promote cost savings and prevent Medicaid waste.

Professionals also have new opportunities to improve focus on school-home carryover. Parent involvement is critical for positive educational outcomes and may be the largest underutilized resource in the special education equation.

I am not speaking code for decreasing related services and abdicating responsibility to parents. I am talking about an open dialogue about educational best practices and establishing responsible and defensible criteria points for intervention. We have had too many years of poor oversight, lack of accountability, and variable interpretation of special education regulations. I am a practitioner who provides services across dozens of school districts and I can report that there is almost no consistency between districts in how the special education system is administered. This is shocking, particularly in consideration of the tremendous legal process and regulatory requirement that is already present in the system.

In all fairness, there is indeed a price for the fraud and abuse that has existed in this system for many years - but you do not solve the problem with fraud and abuse by failing to address the real problems. New York State has a long history of policy making on the periphery - we decrease service utilization and try to save money by layering complex rule and regulatory changes for Medicaid reimbursement - when what we need to do is establish criteria for the service utilization itself and standardize administration of the program across the State.

We cannot continue to make policy on the periphery of this problem by layering bureaucratic solutions for reimbursement at the feet of school districts or providers. When you present your report to Governor Cuomo, please include reforms that are targeted at the heart of the problem. That means that we need standard procedures, standard entrance and exit criteria, and evidence-based interventions.

Thank you very much for your consideration and for the opportunity to present this information.

If you were unable to attend the meeting you can provide online comment at http://www.health.ny.gov/health_care/medicaid/redesign/

I think it is important for this team to hear from more people about Medicaid reimbursement for services to children. They got an earful from every other constituency - and early intervention and education people need to show up for this conversation.

The roulette wheel of qualifying for preschool special education services.

2011-01-18T14:56:00.007-05:00

I received a referral today for Trevon, who I initially evaluated eight months ago. His mother was concerned about his development and asked the school system for help when he turned three years old. The initial OT evaluation indicated that he had significant fine motor delays and a speech evaluation indicated that he had significant speech and language delays. The school approved speech therapy and a special education teacher but declined the occupational therapy.

Eight months later, I received an authorization to provide services because the motor concerns were impacting his participation in preschool. In the interim months when there was no OT intervention a second OT evaluation was completed which had essentially identical findings to the first evaluation. Apparently, the lobbying efforts of the preschool teacher and speech language pathologist helped convince the district that the OT services were required.

There are many studies that have been completed that discuss the value of prevention and early intervention services for children - I linked a couple good RAND summaries below for primer reading. I wish that we had more sensible policy about child identification - specifically entrance and exit criteria for pediatric services. So much is left to the decision making of committees, and so often the reasoning behind what is or is not approved is impossible to decipher.

In preschool services, a school district has approximately 24 months (between the ages of three and five) to identify children and provide an intervention program. In Trevon's case, this particular district's whimsical decision making threw 8 of those 24 months away. Based on typical patterns within this school district, it is likely that he will be declassified at the end of his preschool career and an additional 1-2 years will pass before he is reconsidered for CSE participation. How much more opportunity will be lost?

There is no doubt that failure to identify needs and failure to provide services saves money in the short term, but in the above referenced studies it is reported that the returns to society for each dollar invested in early intervention services extend from $1.80 to $17.07. The large variability is due to the nature of individuals. For some, early intervention prevents the need for special education services in later grades. For others there are longer term benefits to society like crime prevention and decreased reliance on social safety nets. Short term savings are notoriously shortsighted.

None of this even touches on the subject of the cost to Trevon. In class he is frustrated and now he tantrums when someone places crayons or scissors in front of him. He has the functional skills of an eighteen month old - and now the world is demanding things of him that he can not do. He could have had support, and his family could have received training and education on how to help him, but we have tossed 30% of his available preschool years away.

If there was reasoning behind the school's decision it is not apparent. He didn't qualify before but now he does. We will improve our system tremendously by employing common sense guidelines for related service entry and exit. There will always be room for individual decision making on borderline cases - but real criteria would allow us to appropriately target children who have needs and who would benefit from timely help.

It shouldn't feel so much like a roulette wheel with the likelihood of a child getting the help they need being governed by chance or house rules.

References:

Karoly, L.A..; Greenwood,P.W., et.al. (1998) Investing in our children: What we know and don't know about the costs and benefits of early childhood interventions. Santa Monica: RAND Corporation.

Karoly, L.A., Kilburn, M.R., and Cannon, J.S. (2005). Early childhood interventions: Proven results, future promise. Santa Monica: RAND Corporation.

A new study on SI effectiveness but measurement conundrums persist

2011-01-16T13:30:00.006-05:00

Just a quick couple thoughts as I got a few emails asking me to comment on an article in the new AJOT. The study people are interested in is Effectiveness of sensory integration interventions in children with autism spectrum disorders: A pilot study. (linked for those of you who have access). The study found that both intervention groups demonstrated significant improvements toward goals on the Goal Attainment Scale, but the SI group demonstrated more significant improvement than the FM group. Also, the SI group displayed significantly fewer autistic mannerisms than the FM group as measured by a sub test of the Social Responsiveness Scale.

One of the nicest features of this study is that the researchers completed a series of fidelity measures on the interventions. This is a big step forward because so many of our research studies state that the intervention reflects sensory integration but this particular effort describes a solid fidelity test for each of the interventions provided (fine motor and sensory integration).
The authors state that "one of the purposes of this pilot study was to provide information to guide the development of future RCTs..." I believe that they met this objective well, particularly in consideration of the fidelity measures.

The researchers report that heterogeneity in their intervention groups may have impacted their results. This is probably quite a profound issue. Although we don't know the actual differences between individuals in the study, the tremendous variability in functional levels in ASDs is something that probably should be addressed in study design. The researchers took some positive steps to exclude people who have Asperger Syndrome and to restrict participation to Autism or PDDNOS. This is a good step, but I am not sure that it is an adequate step given the variability in this population.

There are a few design issues that I think need additional discussion. It is difficult to judge the relevance of the outcomes because there is not a non-intervention group. This makes it very difficult to factor out any Hawthorne-type effects. Similarly, the authors conclude that the study supports use of Goal Attainment Scales (GAS) for this type of research but I am not so sure about this. The challenges of GAS include possibly relevant confirmation or expectancy biases if the measurements are being made by the intervening therapists or the parents of the children in the study. I think that GAS can be strengthened if there is a way to more objectively measure progress based on those GAS measures by having independent assessment of results.

Use of the QNST-2 and the SPM are also appropriately identified as limiting because neither is designed or has been confirmed to be a valid pre-test post-test measure. I think that this is good reason to further narrow subject selection and find accepted tools that measure change across time instead of using this as justification to use GAS. That is easier said than done - undoubtedly - but it is just a thought.

The intervention provided in the study was quite intensive (three times per week for a six week period). In actual practice this kind of intensity is often not feasible (either given insurance restrictions or school district authorizations). This makes it a little difficult to know how this could or would generalize in a real-world setting.

Finally, the study is a little unclear about who was providing the SI intervention. The study explicitly states that a graduate student provided the FM intervention under supervision. It is unclear if the graduate students are certified or not, but given that they were being supervised it seems to indicate that they might not be certified. Given the relative lack of experience of an uncertified graduate student and the particular challenges of providing effective intervention to children who have ASDs, it might be important to control for the experience of the therapist between the two groups. It is not clear if graduate students also provided intervention to the SI group. This is a critical distinction and could have an important impact on progress made by the different groups.

I encourage everyone to read and discuss this study. It is a good step forward in our research regarding sensory integration and gives a lot of important information on how future studies might be designed.

References:

Pfeiffer, B.A., Koenig, K., et.al. (2011) Effectiveness of sensory integration interventions in children with autism spectrum disorders: A pilot study. American Journal of Occupational Therapy, 65, 76-85.

Occupational therapists are beginning to ask questions about Interactive Metronome

2011-01-12T16:26:00.003-05:00

The questions about Interactive Metronome have been coming fast and furious the last few months, perhaps associated with their increased marketing - although that is my own speculation. I am also aware of some franchised 'brain therapy' centers that are using the intervention protocol so that might also be driving some of the questions.

Anyway, I recently received this email, which reflects the typical question:

Thank you for your candid thoughts. I loved reading your blog and stayed up until 3 in the morning doing so. I am an OT who has been practicing in pediatrics for 12 years and have never really bought into the whole SI thing; I thought maybe I did not really get it. I have always felt like sensory issues are part of the big picture but have never observed them to be an isolated concern that is fixed by swinging or brushing. I have had some parents ask me about interactive metronome and some therapists I know swear by it. What are your thoughts? Does it have the research to back it up? Thanks for your work to improve our profession and help kids. Happy New Year!

First of all, I don't recommend that anyone stay up that late reading my blog, although I really do appreciate the kind words! :)

Interactive Metronome was introduced several years ago and marketed in perfect timing with an AJOT article that provided some initial evidence about its effectiveness. The basis of the method seems to have some sound science behind it.

In subsequent years, very little research has been done on the method. Most of the more recent 'research' that the IM people refer to is unpublished white papers and conference presentations. Rather than produce research, now all they put out are a bunch of anecdotal case studies - to the point where they now claim that IM helps every condition from soup to nuts. There is a particular case study on Alzheimer's on their website that states "To date there is no published research that clearly shows a link between the use of IM and clinical outcomes in patients diagnosed with Alzheimer’s. But sometimes patients are running out of hope. And sometimes their care providers take chances." What is that supposed to mean? If a desperate family is willing to shell out the dough, am I supposed to do ANYTHING? I just don't like it.

I don't know that IM training is any more or less effective than any other exercise-based therapy approach that focuses on motor planning, timing, and sequencing. At its basic core the concepts seem sound, but I don't think there is enough evidence to state that it is a superior or preferred method in any way - especially since people are charging exorbitant prices for the intervention.

As for their 'certification' process - I am doubtful about anything that 'certifies' anyone after a single day of training. Like many other therapy approaches out there - I think that the 'certification' is more marketing ploy than anything else. It allows someone to say that they are 'IM Certified" and then of course what follows is that people offer "IM Therapy" and of course they charge people a lot of money to receive this "special intervention." For these reasons I tend to dislike the whole premise of one-day crash-course certification so you can hawk someone else's product.

This type of marketing/research conundrum is common in the OT world. Sad to say, but the whole push to have Sensory Processing Disorder included in the DSM-V suffers from the same ill-fate - the people making the argument for inclusion talk about science on one side of their website and they also sell sensory processing disorder t-shirts and offer 'exclusive' sensory processing training on the other side of their website. They don't seem to understand that when they financially benefit it makes the so-called 'research' that they offer somewhat hard to swallow. They don't seem to understand the concept of 'conflict of interest.'

Someday, I am hopeful that people will realize how important it is to separate research and clinical interventions from product sales. For what might have been a program with some merit - the IM people have simply driven themselves down the road of lower credibility, at least from the perspective of people who actually think about these things and don't just drink the marketing Kool-Aid that they put out there for public consumption.

References:

Shaffer, R. J., Jacokes, L. E., Cassily, J. F., Greenspan, S. I., Tuchman, Robert F., Stemmer, Jr., P. J. (2001). Effect of Interactive Metronome Training on Children with ADHD. The American Journal of Occupational Therapy 55 (2); 155-161.

Occupational Therapy Job Opportunity in DC!

2011-01-05T10:40:00.005-05:00

In partial fulfillment of my ongoing public service mission, I wanted to bring a job opportunity to everyone's attention. There is an interesting article in The Washington Examiner today that talks about the DC area Department of Youth Rehabilitation Services wanting to find someone who can teach yoga or tai-chi to children in the program.

I am sure that educating at-risk children in stress management and situational coping strategies is probably a good idea. However, this isn't the only issue in the article that got my attention.

According to the article, the Interim Director got some people suggesting other programs including building a race car, involvement in music programs, and instruction in boxing.

As I read this I couldn't help but think that there were some needs in that program that were obviously not being met.

The article states that "Ward 1 Councilman Jim Graham questioned if turning to yoga was the best approach given the problems the youth face." This makes good political theater, because in a time of fiscal constraint and questions about mandated services it is easy to take pot shots at things that are not well explained. The value of engaging children in normalizing occupations and teaching them appropriate leisure time use is precisely what they need to help avoid recidivism when they get back to the pressures and stresses of their neighborhoods.

How well is the DC Department of Youth Rehabilitation Services meeting the need? Well they have had four Directors in the last year and their system seems to be under a great deal of stress given the severity of behavioral problems that exist in their programs.

I called the Department and spoke to their Human Resources Division. They don't employ occupational therapists, at least not in that job title. There is no Occupational Therapy Department. They have a Recreation Therapy Department, but there are no openings.

This seems like a prime opportunity for someone to go and help them understand a little more about occupational therapy and how it can help with their programs. With such close proximity to AOTA and OT educational programs in the area there are a lot of local resources to leverage.

In full disclosure, I want to state that I don't make these recommendations from an armchair. Locally, we have taken a deep dive into similar programs and transformed the OT services there. We still have some way to go and a lot of opportunity for developing the services further, but it is possible to enter these systems and begin to make a difference.

If any audacious therapist wants a road map to what we did, feel free to contact me. It sounds like this DC program needs some help.

What early intervention providers need to know about administrative rule changes, Part One

2011-01-03T11:09:00.003-05:00

The NYS Early Intervention Program recently issues some FAQs on some regulation revisions that happened in June 2010. These changes are insidious and fly beneath the radar of most people because they constitute rules and regulations that can be administratively altered without a full deliberative process that is associated with actual changes to law/statute.

I figured I would post this today because it is a new year and I think that everyone needs to keep their ears to the ground for changes in rules and regulations that will have a significant impact on the way that health care is delivered on local, state, and federal levels.

This particular gem places additional stress on an already over-burdened New York State Budget. The regulation states that social security numbers and citizenship are required for participation in the early intervention program, BUT NOT REALLY.

June 2, 2010 - Webinar 1 - Overview of Revisions to the EI Regulations
Frequently Asked Questions

1. Question:
Are parent and child social security number required? What if a parent refuses to provide or does not have a social security number?

Answer:
The social security number of the parent and the child are required. However, not having a social security number does not preclude a child from participating in the EIP. If a parent refuses to provide their social security number, the refusal should be documented in the child’s record by the Early Intervention Official or designee (EIO/D), but the program continues to be available to the family. There is no citizenship requirement for eligibility in the EIP. The Department has developed a standard form that municipalities may use for this documentation.

The purpose of requiring SS# and citizenship is so that there can be some mechanism for the state to obtain reimbursement for the services provided (private insurance or perhaps federal Medicaid).

Rather than make effort to increase reimbursement for these services, the state - via their Enforcement Arm (OMIG) - places providers in the crosshairs with a tangled array of ever-evolving documentation and billing requirements that make payment to providers less likely.

Do the math: Allow anyone into the program, whether they can pay or not. Then pinch the providers and find as many reasons as possible not to reimburse for the care that you are mandating. Does anyone really think this will lead to a sustainable service?

The large question is: What is the end game? I predict a socialized system or a mandated unionization of the EIP workforce that will functionally accomplish the same end...

...unless the citizenry starts understanding the insidious world of administrative rule making manipulation in health care that we are now entering.

Evidence of need for system change: Another CSE case study

2010-12-18T09:26:00.006-05:00

I attended a CSE meeting for a child who has an autism diagnosis. This child previously received EI and CPSE services and was declassified upon entry to kindergarten. The parent called the meeting for CSE consideration because of the severe functional problems the child was having in the classroom. The school wanted to 'give him more time' despite the problems he was having because in their perspective many kindergarten children haven't been exposed to school environments and that is why it is reasonable to expect that there is a wide variation in skill levels of children that age. I suppose that is true, but I guess they forgot to remember that he received EI services and CPSE services and has autism.

The school-based occupational therapist presented a boilerplate evaluation that stated the child was normal in all areas with the exception of atypical scores on a Sensory Profile. In the entire four page evaluation there were three or four narrative statements that were specific to the child's performance. The test scores were also presumably specific to the child. The rest of the report was generic and basically descriptions of the tests that were administered. OT was not recommended for the child.

The parent brought the child to me for a private evaluation. I repeated some of the same tests because I was concerned that perhaps the assessments were inaccurate based on the expressed concerns of the family. I was pleasantly surprised to see that he DID score in a typical range on some of the tests, for example, the VMI. This is a test where children have to copy shapes - and it was obvious that he had prior exposure to copying shapes because he replicated them flawlessly.

However, the test doesn't measure HOW a child copies the shapes. This child copied them with atypical approach, often using right to left and bottom to top pencil strokes. The forms were also accurate, although they were reproduced in a segmented fashion. Also, the child held the pencil with a fisted grasp. There was no mention of this on the school OT evaluation. The OT evaluation included a two paragraph description of the VMI but stated nothing about the child's performance outside of the test score.

I don't usually give the Peabody to five year old children because I find it is not as sensitive as other assessments. However, I knew that he couldn't button and I knew that he had an immature pencil grasp so I gave the test knowing that it would be another point of documentation that actually showed where he was having difficulties. Also, I knew that we would have to re-assess him for annual review in the Spring, and I wanted to hold back the most appropriate assessment for that time because generally you want to avoid using the same test repeatedly within a constricted time frame. In the Spring I would like to give him the Miller Function and Participation Scales, which I believe will accurately capture the nature of his functional performance problems. That test also requires a lot of direction following, and I like to use that test when children ALREADY know me and there is a better chance that communication problems or shyness will not interfere with test participation.

Anyway, he scored below the first percentile on the Peabody Fine Motor Scale, and that dragged down the Fine Motor Composite rating as expected. This data didn't seem to move the school based therapist though, who couldn't change her position that he was able to copy the forms accurately on the VMI.

So we talked about other issues like the atypical fine motor skill, the atypical writing approach, his poor visual attention, his inability to dress independently, inability to manage buttons, his clumsy gross motor skills, his inability to answer 'wh' questions and interact dyadically, his inability to effectively interact with other children in play, and his inattention to social convention (like walking out of the kindergarten bathroom with his pants around his ankles). The OT stated that she would never write a goal to improve pencil grasp if a child scored normally on the VMI, and that the other issues were "not OT." She was willing to provide the classroom with a sensory diet, as if that will solve all these other issues.

Sadly, the oddity of this meeting did not end with the OT. He is diagnosed with autism and the committee struggled with what educational classification to use. At first they wanted to use 'Other Health Impaired' or perhaps just provide a 504 plan. Then they decided that the severity of his speech delay would qualify him for speech 3 times weekly, but they would use the 'Multiple Disabilities' classification and state that he has autism and speech delay. They STRONGLY resisted using the 'Autism' classification despite direct documentation from a doctor that he has autism. That would have qualified him for more intensive language intervention as well as some training for the school so they would be better prepared to understand how to intervene. They gave him a classification that identifies the problems but does not qualify him for the necessary interventions. It was surreal.

Finally, we were all pushed out the door as the allotted time for the meeting expired. On every child's IEP there are statements called 'Present Levels of Educational Performance' or 'PLEP' statements. They summarize a child's strengths and needs and are a critical part of the IEP document because they help people understand the nature of the child's skill levels in the school environment and act as a guide for educational intervention. We left the meeting with these incomplete and inaccurate. "Just read them over when you get the document," we were told. "Let me know if we need to change anything. What's important at least is that we got the classification and services established."

So I guess we accomplished classifying him, but not with the classification that is most appropriate and would support the services he needs. I guess we also achieved speech therapy three times a week and OT once a week - although we didn't write goals, didn't write appropriate PLEP statements, and the OT openly stated in the meeting that she didn't know what she could do for the child.

The parent was happy, because this was the most productive meeting she has attended and prior requests to get him classified and services were denied. Although I am glad that she is happy, I was sad because the system has caused her to set her bar so low on this issue.

The system was willing to wait and see how he does in kindergarten, but it ignores the fact that he has required services his whole life and he has an autism diagnosis. The family is worried NOW and they don't understand why he was declassified and they don't understand why the committee acts as though the most important issue is about what terms he should be classified under - when the MD has already provided some very clear evidence regarding his diagnosis. Families don't understand why this process has to be so painful.

The people in the room seemed mostly kind, and other than the apparent administrative tactical maneuvering to avoid the Autism classification it seemed as though they wanted to help the child. I am a little puzzled over how I could have helped the OT. I understand the position that the child scored functionally on one of the tests, but there was an absolute inability to consider his functional participation OUTSIDE of those tests that he could score functionally on. Even when presented with other evidence like:

long history of therapy participation because of difficulty achieving skills
Notable motor delays
Notable sensory processing differences
Notable social and play impairment

Instead, the school OT lectured me on repeating the VMI and that my entire report was invalidated because I repeated a test that was recently administered in the school. Ironically the child scored identically both administrations of the VMI and copying circles, squares, and triangles is hardly an esoteric task for a kindergarten student. The whole concept of practice effect on a test that was not even in question was so irrelevant to the other evaluation findings I didn't even know where to start. I wanted to help them understand that this was a red herring argument but there was just nowhere to go in talking to this committee.

I understand that it must be intimidating to have another therapist come in to a meeting with a second opinion. It is not comfortable to discuss conflicting findings, and certainly no one wants to be wrong, or incorrect. However, as therapists we can't let our own feelings or egos get in the way of improving our own skills and providing the best possible services for a child. A impersonal boiler plate evaluation is not acceptable or appropriate. Failing to consider a child's individual history and needs is not acceptable or appropriate. Parents should demand and rightfully expect more professionalism than template evaluations where the only thing changed in the document is the test scores. If the systems you are working in place pressures on you to cut corners - don't give in. Fight back and improve the system.

Then I remembered my own advice.

We still have a lot of work to do, because although I wrote that advice nearly two years ago I don't know that I have seen enough progress on what we need to do to improve these systems.

One child's Christmas wish, as expressed to the OT

2010-12-08T10:22:00.006-05:00

Lisa is ten years old and currently lives in a residential treatment facility for children who have emotional and behavioral difficulties. Her biological mother was addicted to drugs and Lisa was removed from her custody when she was four years old. She lived for a few years in several foster home placements and the most recent foster family had her for two years and intended to adopt her but they backed out at the last minute. There was a corresponding increase in uncontrolled behavior so she was admitted from another temporary foster placement to her current residential placement.

Lisa's current behavior is very erratic. Her everyday speech is laced with profanity. She is claiming that she was pregnant and just had a baby, but this isn't true. She is physically aggressive, sexually precocious and inappropriate, and has attempted suicide twice.

Lisa was referred for occupational therapy in her residential program because the previous foster family took her for a sensory-based occupational therapy evaluation that they pursued privately. The outside evaluation indicated that she had severe sensory processing difficulties and recommended the following:

Wilbarger Brushing Protocol
Listening to music, such as Mozart
Diaphragmatic breathing exercises
Early release from school so she isn't overwhelmed
Increased intake of water
OT Consultation to the entire residential program where she lives

The evaluation did not include any motor, cognitive, perceptual, social, or occupational measures. There was no developmental history and a scant social history.

I am calling this evaluation to people's attention because it represents such a horrific example of how we are not addressing needs. I would not be surprised to find out that this child does have some difficulties with emotional and behavioral regulation based on some sensory processing issues, but I do not expect that her gigantic problems will be fixed with a brushing program and a lot of water.

In fact, these kinds of recommendations are irresponsible and inappropriate. I am thinking of having the evaluator provide this intervention herself and see how much improvement is made.

Wouldn't it be interesting to listen in on that intervention session: "Gee, Lisa, it says here that you have been in 6 different foster homes, you were sexually abused when you were a toddler, and your biological parents abandoned you and were both addicted to drugs. Why don't you let me brush you and you can take a few deep breaths while we listen to Mozart. That should make it all better."

I am hopeful that some educators and practitioners and students will all read this and think twice the next time they talk about what would constitute an appropriate evaluation, what our scope of practice should include, and how we should be conducting ourselves as professionals.

Please keep Lisa's Christmas List in mind next time you think about how to identify a child's needs. The OT evaluator thinks that Lisa needs a brushing program, lots of water, and early dismissal from school to address her sensory needs. Lisa thinks she needs a car, a Christmas tree, a home, a dad, and a mom.

Which one is closer to being correct?

Liveblogging at the student conclave

2010-11-06T09:06:00.004-04:00

This weekend I am attending the AOTA/NBCOT Student Conclave and was excited to see hundreds of students in attendance! I offered some welcoming remarks to the attendees prior to Dr. Clarke's keynote presentation last night.

This morning Paul Grace, the CEO of NBCOT, offered an excellent presentation on 'Steps Toward Your Essential Credential.' Paul gave students many tips on how to prepare for taking the certification examination, including information on making sure that all college or university requirements are met, how to set up an account with NBCOT, review of examination security, and a call to participate in NBCOT examination development after students achieve their certification. He also encouraged all students to participate on the NBCOT Facebook page. Each week sample exam questions are posted and students engage in conversation using evidence-based practice on how to arrive at the best answer.

As I type, there are two separate sessions for OTR and COTA candidates on "Realities and Myths of the OTR/COTA Examinations." These extremely popular sessions go through critical information about the examinations and are giving students helpful tips on what to expect on the exam.

Later today there are many interesting choices from concurrent sessions on topics ranging from clinical practice specialty areas in pediatrics, work and industry, productive aging, mental health, and rehabilitation. Other sessions focus on OT practice in the Army, transitioning from student to practitioner, how to start your own private practice, health care reform, and many others!

If you weren't able to attend the meeting this year I hope you will consider next year's conclave! It is an excellent kick-start to your professional career as an OTR or COTA!

Book Review: Tuck Me In!

2010-10-29T17:49:00.004-04:00

I received an email from a children's author asking me to take a look at a book he recently co-authored. The book is Tuck Me In! by Dean Hacohen and Sherry Scharschmidt. Dean was hearing some feedback from parents that the book was nice for toddlers who were developing fine motor skills and he was interested in my feedback. He was kind enough to have his publisher forward me a review copy.

I was interested in Dean's book because I am interested in habits and rituals. I spend a lot of time thinking about algorithms that can be programmed to simulate dynamic adaptability in generating non-automated responses to unpredictable environmental stimuli. I think about this stuff a lot because of the typical behavior of toddlers and the clinical behavior of people with autistic spectrum disorders. I sometimes think someone might ask me to be a software consultant for unmanned Mars missions so that is always another reason to keep my thinking sharp. You never know.

Anyway, typically developing toddlers tend to generate automated behavioral responses to environmental change - perhaps because of meta-awareness of lack of control that is associated with emergence out of pre-operational thought. It is helpful for toddlers when the world is predictable and as they realize that they have very little control over what is going on you tend to see patterns of behavioral rigidity and preference for ritual. In these situations adherence to ritual is paradoxically used as a temporary point of dynamic adaptability. As children get older and master the rules that dictate Universe operations they tend to lose interest in rigid behavioral patterns. Mostly.

Children who have autism spectrum disorders have the same adherence to ritual, but generally not because of the same reasons of typically developing toddlers. I've read some interesting literature that talks about using VC/VS gamma capsulotomy to interrupt impaired neurological pathways in people who have OCD (Lopes, Greenberg, et.al, 2009). I don't know if we really know enough to say that these OCD hyper-ritualized behaviors are the same as autism spectrum ritualized behaviors or if we can apply this neurological model to autism. Other less neurologic gobbledy-gook reasons to explain the autism spectrum rituality are based on interesting ideas like genetically programmed behavioral patterns that support safety seeking through hazard detection and avoidance (Boyer & Liénard, 2006). These conversations are a little closer to the developmental toddler models. It is fascinating stuff, actually - and it makes me wonder about the actual continuity between neurologic models and evolutionary models. I expect that these are chicken and egg conversations.

Anyway, typically developing kids like repetitive things. So do kids who have autism. On Friday evenings when my brain is still firing on all cylinders trying to find a way to calm down I also find some comfort in the simple repetition and constancy/assuredness associated with ritual. So that is why I like reading Dean's book on Friday afternoons.

Simple words: "It's time for bed. Who needs to be tucked in?" On each page a different animal (but with the same eyes!) says "I do!" and the child gets to turn the page that looks like a blanket and tucks in each animal. I showed the book to one of my therapists who promptly said "Why didn't I think of this book?"

Parents and kids will like it. You don't need to talk about all the neurological or evolutionary stuff when you explain why it is a good book. Just tell them it is fun and that the pictures are great.

The book is simple. It is repetitive. It is engaging in involving the child in tucking in each animal. It repeats the ritual of tucking in over and over until the book ends and the child is tucked in.

After a full day with our fronto-striatal pathways firing overtime, it is just what we all need.

References:

Boyer, P. and Liénard, P. (2006). Why ritualized behaviour? Precaution systems and action parsing in developmental, pathological, and cultural rituals. Behavioral and Brain Sciences, 29, 595-613.

Hacohen, D. & Scharschmidt, S. (2010). Tuck Me In! Somerville: Candlewick Press.

Lopes, A., Greenberg. B., et.al. (2009). Treatment of Resistant Obsessive-Compulsive Disorder with Ventral Capsular/Ventral Striatal Gamma Capsulotomy: A Pilot Prospective Study. Journal of Neuropsychiatry and Clinical Neurosciences, 21, 381-392

Occupational Therapy Assistants in NY State: A SUPER PROFESSION

2010-10-26T14:35:00.004-04:00

Background fact:
occupational therapy assistant (OTA) means someone who has not passed a NBCOT certification examination or who has not renewed their certification. NY State allows these people to practice.

certified occupational therapy assistant (COTA) means someone who HAS passed a NBCOT certification examination and who HAS renewed their certification. NY State does not require this for occupational therapy assistants.

******************************

The recent NYS Department of Health ruling on qualified professionals to provide OT in NYS schools originally stated that one qualification for practice was:

A certified occupational therapy assistant (COTA) “under the direction of” such a qualified licensed and registered occupational therapist, acting within his or her scope of practice under New York State Law.

This sent quite a few people into a panic because there are many OTAs in NY practicing without ever haven taken the NBCOT examination. After someone takes and passes the NBCOT examination they are allowed to use the initials 'COTA.' This new statement from the Department of Health seemed to indicate that occupational therapy assistants would have to pass their certification examination.

Currently, NYS law only 'certifies' occupational therapy assistants and does not 'license' them. As part of this, there is no current requirement for an occupational therapy assistant to pass a certification examination - there are only educational requirements that have to be satisfied. Therapists who have failed their NBCOT examination find a haven in NY where they are allowed to practice without the NBCOT credentials. This is a concern because the purpose of initial and ongoing NBCOT certification is to ensure a basic level of competence.

Anyway, people started scrambling because there are untold numbers of occupational therapy assistants in NYS who are working and never passed the examination - and this new requirement could theoretically put a lot of people out of work and could have caused a human resources shortage. Enter NYSOTA and AOTA, who quickly responded as reported in the recent AOTA publication State Policy Update October 2010:

NYSOTA quickly went to work and, with the assistance of Chuck Willmarth at AOTA, we argued that the Medicaid agreement language far exceeded what was required by federal statute. In addition, we argued that the occupational therapy practice act provided for the certification of occupational therapy assistants by the
Commissioner of the State Education Department.

NYS bureaucrats concurred with this argument and here is a link to the NYS Department of Education memo that 'clarified' the initial requirement and stated that

Occupational therapy assistants may also be registered with the National Board for Certification of Occupational Therapy (NBCOT); however, this is not required for Medicaid reimbursement purposes. Occupational therapy assistants who are New York State certified but who do not hold national certification use the title “OTA,” not “COTA.”

The short term positive impact of NYSOTA and AOTA is that quite a few occupational therapy assistant jobs were saved - but I am not so sure if this is a net gain for the public who consumes occupational therapy services. The purpose of national certification examinations is to protect the public, and if NYS allows anyone that shows up and gets passing grades in some college courses to become an occupational therapy assistant then what does that say about the quality of OT services in NY State?

The unspoken story - one that even most Occupational Therapists in NY State don't know - is that the NYS Office of the Professions does not directly have disciplinary oversight over occupational therapy assistant practice. The reason for this is because there is a loophole in the Education Law that dictates that there is only jurisdiction over LICENSED professions and not CERTIFIED professions. The difference is that in the licensed profession (Occupational Therapist) there is a certification examination that establishes a base level of competency. There is no such requirement for the occupational therapy assistant - and that is why anytime that a discipline issue comes up against an occupational therapy assistant in NY State they go straight after the supervising occupational therapist, who is the licensed professional.

So, New York State may be the only place in the USA where occupational therapy assistants are A SUPER PROFESSION - they do not need to pass a competency examination, and they are not subject to professional discipline. If an occupational therapy assistant does something wrong their license is not necessarily in immediate jeopardy - but their supervisor's license certainly is.

There are usually only a handful of cases in New York when occupational therapists come up for disciplinary hearings so it is easy for politicians to brush aside the longstanding attempts to change this. There have been bills in the Senate and Assembly to change this for many years but they have not made significant forward progress.

Perhaps the larger issue for consumers (employers, patients, etc) is that professional misconduct may not be the most important measure of this problem. The most important measure of this problem is that we are not doing enough in NY State to ensure basic competency by passing a certification examination. Sadly, there also is no requirement in NY State that occupational therapy professionals have to participate in any continuing education.

This means that your child is sanctioned by NY State to be receiving therapy from someone who never took a certification examination and never attended any continuing education in their life. Perhaps they are not felons so the professional misconduct is not an issue - but what about their ability to deliver an occupational therapy service that has any quality?

Standards barely exist, and when they do exist they lay the blame at the feet of the supervisors. That means that in NY State it is important for occupational therapy supervisors to keep the blunt scissors in the hands of the occupational therapy assistant - if they even decide to take the risk to let them have scissors at all.

More and more we are hearing parents ask if professionals have their NBCOT certification, and in some cases parents are asking specifically that their children NOT be seen by an occupational therapy assistant. In one County where we provide early intervention services we are required to tell the family if services might be provided by an OT assistant and who the supervisor would be. In nearby Counties we are seeing OT assistants being shut out of certain areas of practice.

This is a shame for the thousands of competent COTAs who passed their exam, participate in continuing education, and practice responsibly and effectively. Their professional reputations as occupational therapy professionals and indeed their livelihood is being sacrificed on the altar for the benefit of all the people who skip the NBCOT exam, don't renew their certification, and are not following the best path.

This is a situation that is extremely problematic. It can only be fixed by appropriate policy making that ensures initial and ongoing competency. Until that happens, don't be surprised that more and more consumers will have questions about practitioner qualifications.

In all this mess, that is one good thing that is happening.

Soap opera in NY: As the autism insurance bill turns...

2010-10-18T15:24:00.004-04:00

I received an interesting mass emailing from Autism Speaks today, which is an advocacy group that is currently supporting passage of the autism insurance bill in NY State. I paused because the email contained the following:

"Please stay tuned over the coming hours. The health plans are still working hard to ensure a veto. We need to work together to let the Governor know that we expect him to provide principled leadership and sign S.7000B into law this week."

I found this a little confusing because every other autism advocacy group that I know of in NY is opposing this bill, as are the NYS OT Association and the NYS Speech and Language Therapy Association. The concerns are that no other conditions require such a high standard for 'evidence based practice' as this bill and that this may be used to actually decrease what insurance companies have to reimburse. I don't know anyone that is against the concept of evidence based interventions, but it would be unfair to apply a standard like this to the autism diagnosis when we don't have that same criteria for other conditions.

The reality is that we are still developing evidence, and although insurance companies should not have to reimburse for quackery - they also don't need to hold the autism diagnosis to a higher standard for reimbursement than any other condition.

For background reading on why this bill is being opposed you can read this article that actually reports on who authored the bill - and the allegation is that this was actually written by a health insurance lobbyist!

So which is true?

Did a health insurance lobbyist author this bill? Why is Autism Speaks stating that "The health plans are still working hard to ensure a veto." ??? I am not aware of health insurance companies lobbying for a veto - but I am very aware of a lot of angry parents and health care professionals who are opposed to the bill.

I thought I would clear this up by contacting Judith Ursitti, the Regional Director of State Advocacy Relations for the Autism Speaks organization. She wrote the email that claims insurance companies are lobbying against the bill. I wanted to ask her why so many other autism advocacy groups are opposing the bill and why NYS OT and Speech Associations are opposing the bill. The people at Autism Speaks didn't have any answers for me but they gave me a contact number for Judith Ursitti that goes straight to voice mail. I left a message asking her to contact me. I have not heard from her yet.

I have no doubt that there are many fine people going to the Autism Speaks walks and doing all they can to promote autism awareness and to lobby for their interests. I don't know that people are fully informed of the controversy surrounding this bill. This is a little confusing, and since I can't seem to get an answer from Autism Speaks it sure will be tough to support this bill.

So which do you think is true? Did an insurance lobbyist write this bill?

Or are the insurance companies lobbying against it being signed into law??

It is indeed a sad day that legislation that should be having a positive impact for families dealing with autism is instead embroiled in such contradiction and controversy.

UPDATE:

I received a response from Judith Ursitti via email and will post her comments in full:

Thanks for posting information about efforts to pass autism insurance reform on your blog. I apologize for not promptly returning your call. It’s been a bit of a crazy Monday. J

Here are some FAQ’s that I hope will be helpful. http://www.autismvotes.org/atf/cf/%7B2A179B73-96E2-44C3-8816-1B1C0BE5334B%7D/NY%20S7000B%20FAQ%20Final.pdf I think they cover all of the questions you had.

In addition, my colleague Lorri Unumb also wrote a really nice blog piece discussing some of the questions and misinformation that has circulated about S.7000B:

http://www.autismvotes.org/site/apps/nlnet/content2.aspx?c=frKNI3PCImE&b=3930723&ct=8447191

And just to be clear, S.7000B was written by a woman by the name of Kate Powers who is a legislative assistant for Senator Neil Breslin. You may know her? It was not written by lobbyists or anyone who works for a health plan.

Finally, here is an Op Ed written by Paul F. Macielak, President & CEO, New York Health Plan Association in opposition:

http://www.timesunion.com/default/article/Autism-proposal-doesn-t-deliver-635248.php.

I know we are all working to make sure that New York families have access to the healthcare they need for their loved ones with autism spectrum disorder. Please let me know if you have additional questions. I’m happy to help.

Judith Ursitti
Regional Director State Advocacy Relations

*************************************************

I appreciate the response, but I am not sure if it really addresses the issue of why Autism Speaks finds itself standing alone in supporting this legislation. There is a lot of discussion about the evidence-based issue and as I said I don't think that most people are looking for reimbursement of sham interventions. The language of the current bill leaves insurance companies with plenty of room for exclusions. The fact remains that insurance companies do not have the same latitude for denying interventions that are commonly provided for other disorders; this bill holds autism interventions to a higher standard and that is blatant discrimination. The alleged purpose of the bill is to facilitate insurance coverage - and I just can't see how that will happen.

Also, the simple inclusion of 'medically necessary' language is a huge barrier: is it MEDICALLY necessary to intervene with a 'behavioral' problem? Language re: medical necessity is used by CMS to decline coverage for all kinds of issues - from personal care to hygiene to emotional and behavioral difficulties. Will a child with behavioral difficulties rise to the level of 'medical necessity?' I doubt it - most insurance companies already try to deny autism interventions because they are 'educational and behavioral' as opposed to 'medical.' That means that no one is MEDICALLY COMPROMISED by some child's autism - so there is no need for HEALTH INSURANCE if it is not a MEDICAL problem. I can see this coming from a mile away - I do not know why this kind of language would ever be allowed in the bill.

As for the opposition from the New York Health Plan Association, all I can find is a brief letter to the editor in an Albany newspaper - and the primary opposition is because they state that the bill will not cover what it states it is going to cover. NYHPA states that approaching the issue from mandates on those plans that can be regulated does not mean it will reach the majority of people. I went to the NYHPA website and they didn't have anything about the autism bill listed on their site. Seems it is not such a hot issue from their perspective - and again it makes me wonder why the email says "The health plans are still working hard to ensure a veto." I don't see evidence of this if all that is produced is one little letter to the editor written two months ago. This kind of overstatement leads to a real credibility issue for me.

It seems to me that the primary opposition is from professionals and parents who don't trust the wording in the current bill. I believe it is rather naive to craft a bill that lacks specificity and then expect that the regulatory power-in-charge will actually take this as an opportunity to serve the community. Perhaps Autism Speaks needs to reflect on everyone's experience in dealing with OMIG and OHIP recently to get a little perspective on the lengths taken by NYS bureaucrats to limit reimbursement for services.

Lastly, I don't know what to say about the authorship of the bill - the conflicting accounts speak for themselves. The bottom line is that IF this is signed into law, we will all wait to see what the actual impact is going to be. I object to this kind of legislation where 'the devil is in the details' that don't really become apparent until some regulatory body writes the rules for how the law will be enacted.

This is all highly reminiscent of being told 'You will like it once you see what is in it!' I am not impressed.

We can achieve fair and sensible insurance coverage and address reasonable concerns about evidence-based interventions. I am not that interested in seeing dice rolled about over the fates of children who have disabling conditions. I suspect that this can be done in a much better way.

This bill fails to deliver confidence and credibility - and when one is measuring degrees of failure that is a rather large measure to fail. Tragically, it might actually fail to deliver services too - which will be at the whimsy of however the regs are written. In this economic climate I don't hold out much hope that this will offer any real relief for families. I guess we will find out.

Sensory integration: More evidence that OTs have lost control of the narrative

2010-10-02T09:07:00.004-04:00

There are quite a few opinion pieces in this blog about the state of sensory integration as a model for occupational therapy - the reader is particularly referred here and here for quick background if needed.

Continued evidence that occupational therapists have lost control of the 'sensory integration' narrative can be found in the October 2010 Scientific American Article by Nancy Shute entitled "Desperation drives parents to dubious autism treatments."

Sensory integration therapy is described in the article as ranging from "wrapping children in blankets or placing them in a hug machine to having them play with scented clay..." They also note in the article that this intervention costs families up to $200 per hour or $6000 per year. Sensory integration is listed in a chart as Temptations: Dubious Therapies.

These kinds of articles always seem to generate responses from people who disagree from them, but before anyone responds I think this is a good opportunity to pause and reflect on why we are finding ourselves in this position. The 'Fidelity' problem has been discussed forever and our field has not come together to find a solution. We still have different 'camps' of people supporting different iterations of what should be included in sensory integration models and the result is ongoing confusion in the public square. We have too much mythology and too little evidence when it comes to our interventions. The public is confused because we have confused them.

What do parents want? Perhaps OTs should listen closely to Jim Laidler who was interviewed in the article: "Obviously, the goal of my family, and most families, is to lead as normal a life as possible. Normal is going out to dinner as a family."

We can use our knowledge of sensory processing to help us understand why children who have autism have difficulties in these environments, and make suggestions to families on how to help mediate those difficulties. We can also use training methods, direct practice, and skill development to help children learn to function in those environments.

Or we can let people continue to think that we are putting blankets on children and letting them play with scented clay, charging them exorbitant prices for this 'expertise.'

What kind of occupational therapy are you promoting?

A promise to Dolores

2010-09-28T21:10:00.002-04:00

I can only remember one time in my professional career that I cornered myself with a promise - and as terrified as the experience made me feel - I am so much richer for having made a promise to Dolores.

Dolores had mild learning disabilities and some motor clumsiness. She and her brother were being raised by their mom who was a single parent. Things I remember about this family focus a lot around their names: Dolores, Wally (brother), and Hazel (mom). All of these names are uncommon today, but as uncommon as the names were they fit this family well, because the names reflected precisely on the way that they did not exactly 'fit in' with most of the other people around them. The family was quite poor, and perhaps a little socially awkward, but at the same time the kindest people I have ever met.

Dolores wanted to learn how to ride a bike - she was clumsy and could not coordinate her balance with the motion of her legs. In therapy we worked on developing these skills so that she could ride - and eventually she had improved to the point that I asked her if she had tried riding her bike lately. I will never forget the sadness that she looked at me with as she said, "My bike is broken, and now even if I knew how to ride it I couldn't."

I felt my heart melt right there on the spot, and without any hesitation I told her to bring her bike to me next time and I would fix it for her. There really was no other response to offer other than making that promise.

The next time that they came in I walked them to the parking lot after the session to get the bike out of their car. Their car was quite old (of course) and from the trunk I pulled out an ancient, rusty, and dented Schwinn Western Flyer.

I took the bike home that evening and stripped it down to the frame and air-brushed it a brilliant yellow that I knew Dolores would love. It took hours of work, and I even had some parts soaking in a solution of weak oxalic acid to try to get off all of the surface rust. I found a store that had some pedals that fit, and found a new seat as well - I was really making some progress!

Unfortunately I got hung up on the ball bearings and locking nuts around the pedal mechanism that were impossibly stripped and made the bike un-useable. I almost had a friend machine me the parts but I just kept thinking that this bike would be useless again if anything else ever broke on it. Parts for this bike were just not easy to find.

Dolores asked me each session that she came in, "How's my bike coming, how's my bike coming??" Her mom would gently shush her and tell Dolores that I was busy and I had my own kids and that she should never ask me such things - that it was nice enough of me to even offer to TRY to fix it. After hitting a dead end with the parts I needed, I felt defeated. Then the final blow was delivered when she told me one day, "It's OK, really, I am just glad that you even tried to fix that rusty bike for us."

Dolores' words echoed in my head as I drove home into the sinking sunset. I felt that if I stayed on the road long enough the sun just might swallow me whole and take me with it - to wherever it goes after the day is completed. All that existed was the road. And me in the car. And the sun looming as large as the promise I made, threatening to swallow me whole with each passing moment.

At this time I saw where the earth and the sky met, with no geographic barriers that would limit my perception. The Earth curved outwardly in all directions, and the sky was equally large but in a conversive orientation. As I drove I remember thinking how beautiful it was, how large the sky was, how the earth and sky moved in and out in congruence with my breath. I prayed for an answer.

When I got home I stared at the bike in my garage, wondering what I should do. I could not find the parts I needed. But I promised her I would fix it. PROMISED her. How many people ever promised little Dolores anything? How many people ever came through for her in her short life? The answer that kept coming back to me was "No one does. And no one has." But I knew that I had to.

Here I have to be very thankful for my wife, who understood the mess I got myself into. At the time it certainly wasn't an easy solution, but together we went straight to the store and bought her the best bike that we could find. It was a beautiful pink girl’s bike with a plastic basket that had flowers on it. It was everything that the old Western Flyer was never going to be again: the bike of some child's dreams. And of course, I purchased a matching helmet.

Dolores is a young adult by now. I have always thought that I didn't need to see her again - and that I wanted to remember her as an eight year old little girl, kicked around a little too much by unfair circumstances, and with an innocence of humility and understanding that most eight year old children don't have.

I'll never forget the wonder in her eyes that saw her old Western Flyer magically transformed into this brand new bicycle. "Oh how did you do that?? How did you make it so new??" as she and Wally ran with the bike to try it out.

It may be the best promise I ever got to keep.

Annual update: Another massive hike in health insurance rates

2010-09-17T13:34:00.004-04:00

Yawn.

Is anyone surprised?

We received our new rates for the cost of the health insurance that we offer to employees. The single rate increased 21% and the family rate increased a whopping 27%. I surveyed other WNY health insurance plans and they all have similar increases.

Click here for the ongoing documentation in this blog on the issue. If you can stomach it.

This is not a local New York phenomenon - you will begin hearing a lot of press on this issue now that the October and November rates that reflect mandates from the Patient Protection and Affordable Care Act ('so-called ObamaCare') are being implemented. Headlines out of a neighboring state are similar. Insurance companies claim that removal of lifetime limits, removal of pre-existing condition waiting periods, and assorted other mandates are responsible for driving up the costs.

What this will mean, of course, is that fewer families will be able to afford insurance - which will lead to the accelerated collapse of a medical system that is trying to provide care for people who can no longer afford coverage. If people try to afford health insurance plans they will opt for plans that provide fewer and fewer benefits - and the real kick in the teeth is that even the tax benefits for some health FSAs are being reduced - which is another sucker punch delivered directly at the middle class.

Our politicians/social engineers couldn't get a national health plan in the front door, so this is the next best thing from their perspective. When no one can afford to purchase insurance (employers or their employees) I suppose everyone will fall into some version of a government option.

Bottom line: People had options on who to elect, and then people learned that elections have consequences, and then the system consumed the people who elected it and ironically has taken away all of their options. Sad.

Somewhere that's green.

2010-09-14T21:21:00.003-04:00

This entry is another study in parenting occupations, and in studying how children help to make meaning for their parents and in turn for themselves. So this is for Caleigh.

************************************

To say that I wanted to tame the yard wouldn't be entirely accurate. That would place the yard in a subservient position to myself, and that isn't really how I felt about it. Rather, I wanted the children to be able to live in it and to play in it, and in its state at the time it just wasn't a habitat that was conducive to children's play and development.

One of the immediate problems was that in the back yard the ground that was ten feet closest to the sliding glass doors wasn't graded properly, so water would tend to puddle against the house. The previous owner was dog-sitting a large golden retriever that got left outside a lot - so that caused the space in front of the sliding glass doors to be a giant mudpit of dog prints. No grass grew there. I tried growing some grass when we moved in but as it was an area of high traffic it just didn't seem to work. I tried to re-grade some of the slope but I didn't have the machinery or enough soil to accomplish the task. It was a circular problem: if the area could grow grass then it would drain better and the grading problem would not be so severe and I could grow grass - but it could not grow grass. Most importantly, the kids couldn't play in that muddy mess.

I am a simple person and I like to approach problems with simple solutions. I had no grass, and the soil nutrients and drainage wouldn't support grass, so I needed to do something that would fundamentally alter the growing conditions. I decided to feed my lawn. The lawn never called out to be fed, and in fact I was always a little frightened by the original Little Shop of Horrors movie but I kept the Seymour-references in mind as I fed my lawn and was always happy because I thought its diet would remain relatively simple.

The solution of feeding the lawn spoke to my sense of order because in turn it solved other problems. Now that we had a septic tank we could not have a garbage disposal and that meant that we couldn't blend table scraps down the drain. That meant I had to throw out lettuce, or onion peel, or carrot and potato skins or other vegetable matter into the garbage. It made no sense for me to throw vegetable matter into a plastic garbage bag where it wouldn't naturally decompose, so instead I liked the idea of feeding the leftover vegetables to the patch that couldn't grow grass. This was an excellent solution because I am fundamentally opposed to feeding chemicals or unnatural products into my living space. For over a year I took all that vegetable matter and dumped it into the dirt - with a lot of complaining from my family who was not on board with the plan. My wife was certain that it would attract animals, but I also knew that dumping the onions and mixing in a little hot pepper would repel skunks - and so that solved yet another problem that we were having. I was so pleased with this plan because it addressed so many problems: not growing grass, not being able to have a garbage disposal, finding a way to avoid use of chemicals or fertilizers, and not wanting skunks around the house.

Within two years grass (and clover and other native weeds) filled in the whole area. The root systems bulked up the soil and we didn't have drainage problems any longer. I still fed the grass with onion peel and other cut up vegetable waste because it just seemed like the right thing to do. I think that my golden retriever might have eaten some of it though. I'm not sure.

The grass was green, the lawn was dry, and the children could play - and for many years I thought that was the end of the story.

The unexpected conclusion is that many years later my daughter Caleigh played the lead role of Audrey in Little Shop of Horrors when she was a high school senior. At the end of the play she sang her solo and got consumed by the plant and my smiles and happiness were mixed in at the multiple layers of meaning that were all realized in her lifetime around that song. Now that it's all over I wanted to give her this full story so that now she understands what went into her being able to really live and play somewhere that's green.

The Billy Williams Chair

2010-08-11T13:53:00.001-04:00

I want to write a little bit about donations. I am prompted because a mom who I haven't heard from in a couple years stopped by my office recently and made a donation of equipment that her son used. He died a couple years ago, and the mom (in her words) was able to finally sift through some things in the basement and decided that the therapist would make good use of the items with other children and families.

I can't write about this particular situation yet because to be honest it is too raw and too recent.

Instead I want to write about The Billy Williams Chair. I can write about this chair now without crying, mostly.

Billy had a full 18 year old life before I ever met him for his final year or so. He was a high school student, a singer in the chorus, a big brother, and so much more. Unfortunately, when I met him he was stuck in a hospital bed in a pediatric intensive care unit for most of his time. Billy had transposition of the great arteries, which means that the important vessels in his heart were connected to the wrong places. He had surgery to correct this as an infant, but he had long term complications including pulmonary hypertension that contributed to congestive heart failure. He had a few surgeries over time to help his failing heart, each complicating his condition more and more until he was at the point when I met him. He had a permanent tracheostomy and could not tolerate a Passy-Muir valve so all of our communication was through signing or lip reading or writing or wild gesticulation. It was really frustrating for Billy, and I think it was especially hurtful because he loved to sing.

Multiple surgeries and the need for long term mechanical ventilation kept him bedbound. Poor fluid balance complicated his mobility and range of motion and physical activity - which of course cyclically impacted his fluid balance. The ICU team was incredible in all that it did to manage the complexity of his medical condition - and although I am no expert in such matters it is difficult to imagine that they could have tried harder.

OT and PT were integral team members in the pediatric ICU, and we saw Billy on a daily basis to help him move to whatever his tolerance was, to have him sit up, to have him participate in simple self care activities. Every day we interacted with his mom or dad, and we frequently saw his little brother and sister as well. They were just an incredible family, and they were trying to cope with the most impossible of situations. So many things went wrong because of the medical complexity of his situation - and I just don't remember them complaining. They were the most supportive family I have ever met.

Humor abounded and there was an amazing bond between Billy and his mom. I especially remember the time that his mom made a sign that said "Mulder and Scully! I am in here! Please get me out!" Perhaps the only way to make sense of his impossible situation was to imagine that he was an X-Files case.

I have written before about the futility of working with children who are terminally ill. Billy was terminally ill, but no one really said that out loud. Or maybe they did, and I wasn't listening. It was a hard situation. The doctors kept pushing to fix things, because that is what doctors do. We did the things that the doctors told us to do, because it was a hospital and that's how things work. The ICU team wanted us to maintain Billy's range and mobility throughout all these medical trials - but it was a losing battle. In particular, fluid retention and long term bedrest was causing contractures of the hamstrings so they asked us to use dynasplints which did not work and then progressive serial casting. After one cast application I got a beeper call after hours because Billy just couldn't tolerate the stretch from the cast and it had to be removed. It was all just matter of fact to Billy - but I will never forget the way that he told me with his eyes that the cast was not comfortable and he just couldn't take it any more. That night I removed the cast, and then sat with him for an hour watching The Incredible Mr. Limpet. I couldn't think of any other way to make sense of the therapy at 10pm than to sit with him and watch TV and laugh a little into the lonely night of the ICU.

Somewhere along the way we got Billy a wheelchair. It was a monstrosity of a wheelchair because it needed to have elevating removable legrests, a solid seat, a solid and reclining back, and room underneath it for a portable ventilator. It may have been the bulkiest wheelchair I have ever worked with, but it met his need, and got him out of the bed at least a little. I think he hated it, or maybe he just hated that we were coming down and trying to drag his very frail body out of bed a couple times a day. It was probably all just part of the X-Files to him - more equipment that looked more like it belonged on an alien spaceship that he was being poked and prodded and strapped into.

I don't precisely remember the day when Billy died, but I remember writing the discharge note in matter-of-fact medical terms that grated against every sense of moral order that was in my brain. I remember his wake vividly though - with the Phantom of the Opera music that he loved so much playing in the background and the wonderful picture boards. I especially loved the picture of him with Vulcan ears on when he was younger. It was priceless. I mourned for Billy, and mourned that I did not know the Billy who got to smile like that and wear Vulcan ears and sing. I never heard his singing voice.

I mentioned that his family was amazing, and they were amazing to the point that I can't even explain my feelings. I have no doubt whatsoever that his younger brother and sister have grown into amazing young adults - because that is just the way that family was. Billy's mom donated his wheelchair to the therapy department and we used it many times with other adolescents who needed that kind of large and bulky and heavy duty wheelchair that could accomodate a portable ventilator. The family placed a simple placard on the back of the headrest that said, "In loving memory of Billy Williams." The headrest was curved and the placard was somewhat stiff with an adhesive back. Every time I saw that placard I pushed on it hard to make it adhere better to that chair so it would never come off.

The chair became known throughout the hospital as "The Billy Williams Chair." It was something that the PT and I initially used to describe the chair, and it pleased me immensely to be sitting in a planning meeting and to hear a floor nurse say, "Do you think that we could use The Billy Williams Chair for this child?"

I left that position over ten years ago now, and I doubt that the chair is still being used. I doubt even more that the stiff placard stayed on that curved headrest. More importantly though, I think it is a good time for me to talk about The Billy Williams Chair so that families know that when something gets donated it really does get used - and even when something is done being used and even when the adhesive is off of the memorial placard - that the memory of amazing people like Billy and his family is stuck in my mind forever.

The erosion of special education services in New York State

2010-08-09T15:15:00.004-04:00

Money is tight and the new method for getting budgets passed in the NY State capital is to cram everything into emergency budget extensions that the public never gets to see or comment on.

The other method for cost savings is to make rule and regulatory changes that have a public comment period - but it does not matter what the public says because the rules are going to be passed no matter what.

Early intervention providers saw this earlier in the year when they experienced a 10% rate reduction for most home and community based visits. This effectively limits the reimbursement to therapy providers and is driving a large number of professionals out of the delivery system. A mandatory 10% pay cut is significant, and although there were public hearings about changes to the rates and other delivery issues it really did not matter. Fewer providers means fewer services provided - which is precisely what the bureaucrats intended.

A new round of regulatory changes is on the horizon, this time taking aim at children who require speech therapy services and any children who are in integrated classrooms. The new regulations remove all minimum service requirements for speech therapy and they also allow for more children to be crammed into special education classes. Children who have autism are specifically identified as having their minimum services slashed.

The problem with all these changes is that there is no evidence that indicates this is the best way to reform or modify the system. This is pure knee-jerk reaction to a budget shortfall and has nothing to do with best practices. So, as we all continue to pay for waste, fraud, and abuse throughout the system - clueless bureaucrats and politicians sit in their ivory towers and make random cuts to budget lines that they probably don't have any ability to even understand.

The bottom line on all of this is that many schools are quickly becoming a de facto joke of a place for service provision. In most places the inability to effectively manage will cause you to be fired - will we finally apply this standard to the huckster administrators and career politicians who are pretending to manage our educational system?

My advice to parents is to monitor your special education services closely. The system is in a rapid free-fall, but you won't see it reported on much because it is happening in small bits through regulatory and rule changes. Anything discretionary (like summer and after school programs) are all being slashed. Staffing is being reduced and more children are being placed in classrooms. Reimbursement to providers is being cut. Children who previously received services are being declassified.

Families who have resources will use them to seek services privately - but those who do not have resources will simply suffer.

Some of this is a reflection of a tight economy. More of this is related to the New York State Plan Amendment that places vast new restrictions and requirements on Medicaid funding for special education services.

In all fairness, there is indeed a price for the fraud and abuse that has existed in this system for many years - but you do not solve the problem with fraud and abuse by failing to address the real problems and instead placing children in the cross hairs of your budget slashing methods.

The people in power will point to Medicaid fraud and say that budget shortfalls are not their fault.

They are hoping that you won't notice that they are trying to solve the problem at the expense of children who have disabilities.