Tinfoil hat analysis: Crypto-eugenics and the autism community

I believe in science and I also believe in scientific advancement.  I have stated before that I am not a Luddite even though I sometimes take positions that might cause people to question.

I am having another Luddite moment though.

About a year ago I wrote a cautionary post to the autism community, advising them to embrace the DSM-V changes that would make diagnosis more difficult.  In summary the post was a tinfoil hat analysis of eugenics and disabilities and reflected on what we have seen happen in the T21 community.  Today I am thinking that embracing DSM-V changes  is not enough to provide appropriate cover from the crypto-eugenicists.

Well it is time to dust off the tinfoil hats because we have ongoing evidence of more shift toward a death culture that now has the autism community directly in the crosshairs.

Walker et al (2013) just published a study that essentially creates a context where autism risk can be accurately identified via looking at the creases and folds in the placenta.  Apparently, having two or more folds predicted autism at a 92% specificity rate and having four or more folds predicted autism at a 99.9% specificity rate.

The authors are excited about their findings and believe that this discovery can help with early diagnosis and early intervention.

I have no reason to doubt their direct intentions.  But I also have a deep understanding of how these things get started.  You can be certain that there are more than a few crypto-eugenicists who are spinning their wheels over this.  Please recall it was just a year ago that we were all treated to the infamous Giubilini and Minerva (2012) article calling for "after birth abortions."

The issue here is that the death culture will continue to take whacks at this issue in direct or indirect ways - it does not matter how outraged any community may get, and there was an awful lot of controversy on this last year.  The death culture will not be discouraged.

Here is another stunning example of how we slide down the slope - Kouider et al (2013) just published an interesting article that used EEG to analyze facial recognition in infants.  They used the term 'perceptual consciousness' in a rather specific way but the popular culture picks up the information and reports it in a slightly different way.  This popular aggregation site doesn't say 'perceptual consciousness' but rather that 'babies have consciousness at 5 months of age.'  

It does not take much to imagine what horrible positions can be justified when someone uses the argument that babies don't have 'consciousness' yet.

These are important issues for occupational therapists to consider because we are on the front-lines of intervention for children who have disabilities.  I encourage all OTs working in pediatrics to deeply read about these issues and to be on the alert for policies that marginalize people and limit access to appropriate care.  These policies will be the shot across the bow for worse things to come.


References:

Giubilini, A.; Minerva, F. (2012). "After-birth abortion: Why should the baby live?". Journal of Medical Ethics. doi:10.1136/medethics-2011-100411

Kouider, S., et al. (2013). A neural marker of perceptual consciousness in infants. Science, 340(6130), 376-380.

Walker, C.K., et al (2013). Trophoblast inclusions are significantly increased in the placentas of children in families at risk for autism. Biological psychiatry,  (Article in Press DOI: 10.1016/j.biopsych.2013.03.006)

Mixing up chickens and eggs: A response to Fleming-Castaldy and Gillen

In the recent AJOT Fleming-Castaldy and Gillen wrote an interesting article entitled "The issue is: Ensuring that education, certification, and practice are evidence based."  In the article, they examine why outdated neurophysiologic techniques are promoted in the profession of occupational therapy as opposed to more current and evidence based motor learning and motor control theories.  They argue that outdated models based on Bobath and Brunnstrom have no place in contemporary practice.

In spirit I agree wholeheartedly.  There are many techniques that are still present in contemporary practice and we hang onto those techniques even in the face of mounting evidence that other models are more appropriate.  I have spent considerable time in this blog discussing this issue as it relates to certain sensory-based approaches and the very limited evidence that exists for their continued promotion and use.

Toward the end of the article they suggest that educators need to critically appraise their curricula, that textbook authors need to thoughtfully consider what they are including in texts, and that NBCOT needs to consider their exam development methodology.

They do not mention any role for the professional association (AOTA) outside of a general reference to ACOTE standards and I think this is a serious error.  This weekend at the AOTA conference I attended a special interest section workshop that promoted three pediatric sensory based interventions that have virtually no supporting evidence.  One of those interventions was a very controversial listening/auditory method that has been labeled experimental by other important professional associations.  I believe that our professional association has a direct responsibility to promote higher quality presentations at the national conference that reflect consideration of evidence - particularly when those presentations are coming out of the special interest sections of the association.

I have experience with certification examinations so I wanted to address several incorrect statements about the role of a certifying body.  These are my own opinions and I am not speaking for NBCOT as I am no longer on their board.

Fleming-Castaldy and Gillen state that outdated material regarding neurophysiological approaches appears on the certification examination and in the reference texts that are used to create the examination.  They further state that educators feel compelled to teach that material because they want their students to pass the examination.  These statements are begging the question based on the incorrect assumption that the certification examination drives educational content.  This is a serious logical fallacy.

In actuality, NBCOT generates its list of references based on a survey of EDUCATIONAL PROGRAMS and TEXTBOOKS THAT EDUCATORS ARE USING IN THEIR CURRICULA.  The list of textbooks is not created out of whole cloth and the point of origin is not NBCOT.

Evidence takes on many forms - including what is written in textbooks and what is anecdotal to practice.  I fully agree that this is not the best evidence but a certification examination has the responsibility to reflect actual practice - even when actual practice is ignoring higher level evidence like research studies.  It is a conundrum to be sure. 

Items appear in the practice analysis and are ultimately reflected in an examination blueprint based on the criticality of responses from entry level practitioners.  In other words, entry level practitioners are using those techniques. If they are using those techniques it is not because they appear on an NBCOT reference book list.  They are using those techniques because that is what they were taught and that is what they see in the field.

Therefore, the correct origination of content is the academic program and the field.  NBCOT uses references based on feedback from programs about the texts they are using and by responses of entry level practitioners.

Furthermore, Fleming-Castaldy and Gillen state that NBCOT practice analysis survey respondents may not have updated their practice and may not be using evidence.  This is a factually incorrect assertion because the 2008 practice analysis was given to practitioners who worked only from 0-36 months.  If practitioners who completed the survey don't use evidence based practice it is not because they haven't UPDATED their methods; it is because they were never educated in those methods OR if they were educated in those methods then they chose to abandon them when they entered practice.  That has nothing to do with practice analysis methodology - that is a problem in the field.

It is important to raise this question about why there is a hesitancy in our profession to abandon methods that lack evidence and I congratulate the authors for raising an important issue.  However, I believe it is important to point out some errors in their analysis as well as to assign greater responsibility to the professional association.  The certification examination is a lagging indicator that is downstream of many other problems including broad professional tolerance for outdated methods, teaching outdated methods in occupational therapy curricula, lack of AOTA guidance about abandoning outdated methods, and poor textbook writing.

There would be an appropriate hue and cry if a certifying body suddenly took it upon itself to unilaterally dictate the standards of what the profession was supposed to teach and practice.  Certification examination development is a mirror of the profession - and nothing more.  The best that a certification body can do is HOPE to indirectly influence practice by promoting evidence (e.g. offering free database access to all certificants).  They can't directly drive that process - that is the responsibility of the profession itself, and that includes its educators and its practitioners.

References:

Castaldy-Fleming, R. and Gillen, G. (2013).  The issue is: Ensuring that education, certification, and practice are evidence based.  American Journal of Occupational Therapy, 67, 364-369.

National Board for Certification in Occupational Therapy (2008). 2007 NBCOT Practice Analysis.  NBCOT: National Board for Certification in Occupational Therapy

A reminder about human agency and self reliance

There has been some noise and distress in social media circles with the recent advertisement run by MSNBC regarding 'who should be responsible for raising children.'  Here is the video:

This academic/pundit has since walked back some of her comments, stating that people just didn't understand the nuanced nature of what she was saying about 'collective' efforts in raising children.

I suppose that if she wanted her message to be that we need to 'build a world together' that she should have said that in the original message instead of a bizarre statement that we need to 'break through our kind of private idea that kids belong to their parents.'   Most parents I have spoken to about this weren't impressed with being informed that they just weren't nuanced enough to  understand the original message.

This is an issue that directly relates to therapy services for children because we are at a point in time where it is becoming increasingly evident that we don't have resources to support all of the social programs that (as a society) we want to support.  People have values to provide social safety nets, but all the recent posts about the early intervention program in NY State should provide ample evidence that the government just can't support what it has promised.

People don't seem to like that.  I have seen anger and lots of blame being tossed about - and none of it seems to be particularly constructive.

Very liberal voices, represented by this MSNBC pundit, seem to argue that the solution will be to tax people more and to grow our programs more and place more responsibility on the State for providing these services.

But the State can't do this any longer.  And getting angry about that fact is not constructive.

Also, we have to consider what the State's record is in taking care of people who have disabilities.  We need to remember our history.

That does not mean that we eliminate social safety nets.  It certainly does not mean that we don't expect help from each other.  However, we need to rethink our model because although 'It might take a village' in some cases, that doesn't mean this will be the de facto methodology for handling every situation because that philosophy is no longer sustainable and even more importantly that philosophy robs people of the opportunity for dignity through self-reliance.

Dignity through self-reliance is actually important when it comes to occupational therapy theories.  Fifty years ago (!) Mary Reilly asked us if America was the place and if the 20th century was the time to determine if our profession was going to serve what she called 'society's need for action.'  Mary Reilly  believed that our service was meeting needs and facilitating action, productivity, and human agency.  She did not suggest that meaning was arrived at through collectivism, but rather as a result of a person's need to master their environment - to alter and improve it.

Is it not curious that we are so willing to abandon that philosophy now when we are structuring care delivery systems and making recommendations for services?

 We have arrived at a pragmatic point of decision and we have to decide what our care systems will look like and how they will be structured and delivered.  It is a good time to reflect on Mary Reilly's wisdom and to remind ourselves of our philosophical core.

As a start, we need to reject the expectation that our municipalities will be able to be the never-ending source of programming effort and resources.  The pragmatic barrier has been reached and the evidence is that we can't afford that model.


We need a re-designed service delivery model that has at its core a requirement for family investment and that promotes action, productivity, and human agency.

I define investment as requirement for time, energy, interest, participation, and cost-sharing.

In my opinion, entitlement programs as currently constituted do not mandate parental investment.  As such they rob families of agency.  It is common for children to receive OT services in the schools and for therapists to have only nominal contact with the family.  That is not a recipe for shared responsibility for outcomes and it is not a recipe for promoting human agency.  Therapy provided in a 1-2x per week model with little or constricted opportunity for classroom and home carryover is a poor model.

Of course some therapists have release time or make extraordinary efforts to communicate with families but as a whole these are the exceptions and not the rules.  This is not so much the fault of the therapists who I am sure would LIKE to communicate more with families; rather it is the fault of a system that is poorly constructed and does not promote this communication.

As for early intervention and home-based CPSE services, I believe that we should stop perpetuating the mythology that providing a service in the 'natural environment' is the de facto best model.  Last week I did a home visit for a baby who has torticollis - and the condition is complicated by the fact that the child is restricted to a 6x8 carpeted area bounded by a sectional couch, a 55 gallon aquarium, and a 60" TV.  The child sits with a kyphotic posture and head laterally tilted from floor level all day long so he can see the TV and aquarium.  The parent has been instructed in modifying the environment but has been unable to make changes for a variety of reasons including inertia, lack of interest, and blaming the spouse.  For another child, the tiny trailer that the family lived in had clothing, garbage, toys, and Kix cereal strewn all over the play area and there was literally no where to even sit on the floor.  The parent takes the time that the therapist is present to attend to Facebook and cell phone texting.  Both families do not carryover, obtain little to no benefit from the 'natural environment,' and receive their services for free and are clearly not invested in any way.  They have been robbed of human agency through models of collectivism and entitlements that are delivered for free directly to their front doors.

There are some families where the old EI/CPSE models work well but that is not a function of the natural environment; it is a function of the family's investment in spite of the entitlement culture.

I see children and families in my private clinic also.  The children and families that I see come from an extraordinarily diverse socioeconomic and cultural background.  Some receive public assistance and have Medicaid; others have private insurance or have the financial resources to private pay.  No matter what their culture or socioeconomic differences are they all share a common core trait: they WANT their child to receive therapy, they WANT to listen to therapist recommendations, they TAKE THE TIME to make appointments and keep appointments at a community-based private clinic, and most importantly they all FOLLOW THROUGH on recommendations and are highly invested in what I call a 'parental empowerment' model of service.  That model of service is oriented toward LOW FREQUENCY consultation (often only once a week) and HIGH INTENSITY parental consultation and home programs.  This model of service promotes agency and self reliance.

The services that children receive in my clinic are extraordinarily less expensive than home based or school based models.  Additionally, the families who are invested have significantly better outcomes.  THEY set the goals and then THEY invest the time to make them happen.

Because there is no 'investment metric' for families entering into entitlement programs that is why I would not mind if those systems imploded.  That would leave families who really wanted the services to find ways to pursue and obtain the services.  Providing services, or anything for that matter, with no requirement for investment only serves to reinforce ongoing dependency and lack of progress.

Because families may be at many different phases of understanding the criticality of their investment and participation, traditional services (as currently constituted) should be provided on a time limited basis with the primary goal of education regarding the importance of parental investment.  Then it should be up to them to follow-through - and obtain those services under a different model that mandates their participation and promotes their human agency.

I suspect this would be considered radical - but that is only because we have loud voices in our public discourse that state that parents don't need to be responsible and that the village will take care of any concerns.

We need to counter those voices by reminding ourselves of the power of human action and agency - and of the power of self-reliance 

I believe in social safety nets and I believe that we need to help families find ways to become more invested.  To become more self-reliant.

I DON'T believe that we are doing much to  empower families using our current models - and in that sense we are really only serving ourselves by chasing the unsuccessful notion that the village is somehow better positioned to solve problems of individual human agency.

It is time that we all read that Slagle lecture again.


Reference:

 Reilly, M. (1962). Occupational therapy can be one of the great ideas of 20th century medicine. American Journal of Occupational Therapy, 16, 300–308.

NYS and the last second document drop on the early intervention program

If you pay attention to the news you will notice that Governor Cuomo is on a self congratulation tour for an on-time state budget.  However, what is not mentioned in his self congratulation is the systematic dismantling that is occurring with the State's Early Intervention program and the devastation to social service programs that is left in the wake of his policies.

Families need to be aware because as of April 1 there are many providers around the State who are no longer sanctioned to be early intervention providers.  Additionally, for those who have elected to remain in the system, there has been an absolutely dysfunctional last minute document cram to get contracts in place and according to the Bureau of Early Intervention it seems that many providers were not even aware of the whole process.  Some of us have been blogging and talking about this for over a year - but the reality is that apparently there were a lot of providers who were not tuned in and had no idea that this was all coming.  The Bureau of Early Intervention has asked counties to 'get the word out' so that there are no disruptions - and they are reportedly accepting faxed signatures on contracts - hardly the way for a government to be conducting business.

Additionally, the billing and payment system for the entire program has been changed - with virtually no notice to providers and agencies who rely on at least some degree of cash flow to continue offering services for this program.

Look at what your tax dollars buys you: This email instructing providers how billing in the NEW early intervention program will work was sent out at 5:34pm on March 29th.

New York State Department of Health

Bureau of Early Intervention Electronic Mailing List

 Early Intervention Interim Billing and Claiming Process
  The purpose of this communication is to introduce EI Providers to the interim billing and claiming process effective as of April 1, 2013.
This is the first in a series of communications bulletins intended to coordinate EI Provider migration to the new process. The planned set of communication bulletins will include:

 · How to Submit EI Billing after 4/1/2013
 · How to Enter Paper Insurance Remittances/EOB
 · How to Resolve Workable Rejections & Denials
 · How to View the Status of CLAIMS A New Website

A new website https://www.EIBilling.com has been developed. Access to the billing functionality at this website requires proper login credentials. Those credentials are being emailed to EI providers separately. This website will serve as the focal point for Providers, Counties, DOH, and the interim fiscal process. NYEIS Billing There is no change to enter billing for children enrolled in NYEIS. If a provider uses the NYEIS data entry screens to enter billing, simply continue to do so. If a provider uses in-house software or 3rd party software to electronically transmit billing to NYEIS, simply continue to do so. The interface from NYEIS to the interim fiscal process is seamless. KIDS Billing

For services provided to children enrolled in KIDS, there are three (3) options for entering billing. First, the ability to process a KIDS “disk billing” file has been preserved. Those providers who have been using KIDS “disk billing” can continue to do so. Second, the interim fiscal process will offer an EXCEL template that can be used to enter attendance off-line. Third, web based attendance entry is available at the new website.

Training Details of how to navigate this new website will be depicted in a training webinar. A link to this training webinar will be emailed to providers in the very near future. In the coming weeks there will be webinars on these interim procedures so that the reimbursement process can continue.

This is how little the NYS government cares about this program.  They dreamt up and negotiated and then legislated these changes TWO BUDGET CYCLES AGO and they are giving providers a document dump on how to navigate the new system the weekend before it is supposed to go live - and in actuality there is no training available at all.

Imagine being asked to go to work on Monday but being told that your boss is still developing a mechanism for how and when you are going to be paid.  Don't worry though!  NY State has it all under control!!

Providers hear words like 'seamless' and promises that 'claims will be processed faster than before' but anyone who believes that has obviously never seen a government try to implement a new process.

The unfortunate reality is that there is no trade association to stand up to this nonsense, and the children and families who receive these services are all isolated in their own homes with no central mechanism to communicate to each other or to even really know that all this is happening.  At least with the proposed OPWDD cuts there are vocal advocates and organized groups.  Early Intervention has no such champion.

And that is why the government gets away with it.

To the degree that the Early Intervention system trips through the next several months, I want to tell you who to thank.  Thank your providers, who have blindly signed contracts and are getting last second instructions on how the billing system will work.  Thank your providers for their willingness to stick it out even though they don't really know when they will be paid.

Please save your most special thanks for your government - and show them how much you appreciate their stewardship at the next election.

How citizen participation impacts regulation of a profession

I just got back from a meeting where the NYS Office of the Medicaid Inspector General informed a County that there was inadequate documentation of supervision and that a number of claims were therefore ineligible for reimbursement.

At this exit interview I made the following speech to the OMIG auditors:

Thank you for the opportunity to participate in this exit interview.  I have been an occupational therapist for over 25 years and I have experienced many audits from CARF, CORF, JCAHO, NYSDOH, IPRO, and many others. 

Generally when there is an allegation of violation there is also an accompanying citation of the regulation that was violated.  That citation is particularly useful for the provider community because that allows the provider to access the precise information on what is required, and that empowers the provider to offer the information to the auditor.  The information on the alleged violations on lack of adequate supervision are rather imprecise, and as I want to be a compliant Medicaid provider I am asking for some clarification so that I can be sure to provide the appropriate supporting documentation that you require.

The auditor immediately replied and cited 8 CRR-NY 76.6 which can be looked up at this site and which does not include a level of specificity that the auditor was requiring.

Well I appreciate that citation but you are indicating a level of specificity that is not present in the regulation.  In fact, we provided documentation of monthly supervision and in fact all of the daily notes were co-signed, so it is a little confusing what you are looking for precisely.

The auditor interjected that it was HIS INTERPRETATION that the regulation meant that there should be a certain type of documentation and that if he was a parent that is what he would want.

Thank you so much for advising me about what you would like as a parent.  Therapists always appreciate knowing what families would like to see.  However, we tend not to form policy directly based on what some individual might interpret or what would individual might want.  You see, specificity is really helpful because although I doubt that any provider would object to what you are asking for, the fact is that level of specificity is not supported in the regulation you are citing.  When we provide our documentation we follow prevailing regulations, and the documentation that we provided to you is based on the requirements that are ACTUALLY present in the regulation.  In fact, this requirement that you are asking for is a brand new requirement that I have never before heard.  It was not mentioned in the Medicaid Training that was mandated by the State Education Department.  It is not listed in your regulations.  It is not listed in your Medicaid Q&As.  I am sure you can understand our confusion when you are asking for something that we have never heard of before.  We all want to be compliant Medicaid providers, but specificity is rather important, particularly when weighty allegations are in play.

Here I have to cut OMIG some slack, because in fact they are trying to implement some regulations that they did not even write.  In a more perfectly constructed regulatory world there would be more functional communication between the State Education Department and OMIG.  In actuality that doesn't really exist.  Also, supervision requirements have been shifting based on recent laws, so some of the specificity that was being asked for was NOT a requirement at the time of the service delivery in question.

That left the auditor in the position where he reported that he has to consult with State Ed to find out what the supervision requirements are and what was published in the Medicaid Q&As.  Based on information available online for published OMIG audits it would seem that no one has turned back and asked them to provide supporting citation of regulations before.  Either that or Counties roll over and play dead as soon as the bureaucratic hand takes a threatening posture.

I don't know how this will end, but the point of documenting this is so that people understand that if you approach the auditors on their turf and ask them to provide citation of what you are violating, then they really better be in a position to support their allegation.

My best guess is that the rest of the State can expect a Medicaid Alert in the very near future that will even more clearly specify the Medicaid requirements for supervision of occupational therapy assistants in schools.

"We are building the plane while we are flying it."

The New York State Early Intervention Coordinating Council was scheduled to meet a couple days ago but the meeting was cancelled and a subsequent video/teleconference was scheduled for today, 3/15.  The original meeting was rescheduled to 4/18, but that may still change based on member availability.

It is difficult to not be cynical, but did they cancel the meeting to limit participation and comment prior to their 4/1 switchover when NY State takes responsibility from the Counties for administration of the program?  I asked people in the Bureau of Early Intervention in Albany and they told me that they thought that having a video/teleconference would allow more people to participate than if they just had the meeting in Albany.  What they failed to mention was that the new meeting would not be open for public comment or participation.  In other words, today's meeting was a one way communication and propaganda opportunity for the Department of Health.

During the meeting today they spent 2/3 of the allotted time discussing the Governor's proposals for the 2013-2014 budget year.  The NYS Assembly has already rejected most of the Governor's proposals and the NYS Senate has also similarly rejected reform proposals.  Budget negotiations are still ongoing so where this will all end up is still anyone's guess.  We will undoubtedly know more after the weekend and early next week.  I was disappointed that they spent so much time discussing a budget process when immediate and pressing concerns about the State Fiscal Agent and new contracting with the State needed more conversation.

During the meeting today Director Brad Hutton indicated that there were conversations about delaying implementation of the new SFA but he warned of unintended consequences with delays because the Counties have already terminated provider agreements effective 3/31/13.  What he failed to mention is that these actions are a response to LAST YEAR'S budget and that the DOH has pushed off implementation until the 11th hour, so functionally it is the Bureau of Early Intervention's fault that they are trying to cram all of these changes through at the last minute.  In reality, providers have only had a few short weeks to learn that their contracts were cancelled, to try to review the new contract from the State, and to prepare for an entirely reconfigured billing and payment system.  In Director Hutton's words, "We are building the plane while we are flying it."  This is a stunning statement from a public official and in my opinion a direct reflection of a total lack of functional implementation of the 2013 budget requirements.  In a previous blog post I called this a 'planned demolition' and after hearing Director Hutton's comments today I am more convinced that this was an accurate description.

In just two weeks all early intervention provider contracts will be terminated, and the DOH is frantically scrambling to get contracts approved so that children across the State will still be able to receive services on 4/1.  According to Director Hutton it is likely that an interim State Fiscal Agent will be put in place but the DOH is also allegedly prepared to process claims themselves.  Although he acknowledged providers concerns about payments and cash flow, Director Hutton does not demonstrate any clear understanding of the impact of 11th hour implementation.  In reality, some providers are simply not going to contract with the State.  Others will contract with the State but at the same time there is a parallel crunch to authorize providers as 'non-billing' Medicaid providers so they can get paid.  Anyone who has attempted to navigate the OHIP maze of Medicaid approval knows how daunting that can be - so even if providers have contracts there is little chance that many will have their Medicaid approval in time.  Again, this is the direct result of last minute cramming and is an irresponsible way to run this important program.

In a series of less than honest statements, Director Hutton answered questions about payment schedules by indicating that the State would process claims in a rapid fashion and that the first batch of payments would be processed on April 15.  What he does not say is that this only applies to Medicaid and no-insurance cases, and if the provider is not yet Medicaid approved no one yet has an answer for how claims will be processed.  Apparently this is being reviewed by the lawyers, because the Counties are afraid that lack of Medicaid approval will cause payment responsibility to waterfall down to their level - and they don't want that burden!  If you think that the program administrators in Albany and in Counties have any interest in shepherding a functional program for children then you should have been in on this call and listened to them all maneuver so that they could shuffle the fiscal responsibility off to another party.  In all these conversations there is no mention of the fact that providers are leaving the system, that waiting lists are likely, and that children who were getting services on 3/31 really might not be getting them on 4/1.

Based on the information provided, it seems that Medicaid claims (IF the provider is actually a Medicaid provider!) might actually get processed and paid in a timely fashion, if the system operates the way that they say it will.  Again, the devil is in the details, and what they DON'T mention is that commercial insurance will bottleneck this system because claims adjudication for those insurers will slow down the reimbursement process to a snail's pace.  This is perhaps the most ironic twist for providers: it is generally easy to find providers to work in the wealthy suburbs but those cases may actually be the ones that are slowest to reimburse because there is increased likelihood that those families will have commercial insurance.  It is probably not a stretch to imagine that there will be some modest correlation between socioeconomic status and Medicaid eligibility.  Providers will now likely have to consider that working in those wealthy suburbs will come at the price of generally slower reimbursement.  I am very curious to see how this plays out - because if providers opt to accept cases in high Medicaid-concentrated areas, how squeaky will the wheels of those wealthy families be when there are now waiting lists to provide services in the burbs?  Will providers make the link and suddenly be more willing to accept cases in the urban environments?

I  expect that this level of analysis is lost on the Albany widget counters or maybe they know and just don't care.  It is hard to know.

A lot of the success or failure of this early intervention system will now actually rest on the willingness of agencies to float salaries over time and to access credit to make their payrolls if their caseloads are 'burdened' by families in the wealthy suburbs who have commercial insurance adjudication that will gum up the payment cycle.  The days of the small agency and solo private provider are most likely over, at least to the extent that this is what the system was previously built and dependent on.

The sum total here is that the State has boxed itself into reform, had no functional plan for implementing the reform, crammed it all down the throats of the provider community at the last minute, and has no real plan or idea if their implementation is even going to work in two weeks.  The result will be that on April 1 there will be fewer providers, longer waiting lists, and a very unknown billing process and payment system.  The system will lurch along, propped up by those agencies who will fund the madness until the dust settles.  In the meantime, just in case anyone thinks that they have this all figured out, the next round of disaster is being negotiated behind closed doors for the 2014 budget.

Most notable for people who are paying attention, Director Hutton made repeated statements that 'people have misinterpreted our intent' or 'people are misinterpreting the impact of this or that.'  Director Hutton should consider that if there is so much misinterpretation, whose responsibility is that?  His management of these reforms has been a disappointment, and that is really a generous understatement.

That is my blunt analysis.

A response to Hinojosa's "The Evidence-based paradox."

Jim Hinojosa (2013) wrote an interesting essay in the recent AJOT entitled "The evidence based paradox" which was published in "The Issue Is..." section.  I believe that this is an important article to read and discuss.

I was a little concerned when I was reading the article because although he took some rather specific steps to tread cautiously and he did not go so far as an outright rejection of an evidence-based model there is still danger in propelling our thinking backward when you express the kinds of concerns that he expressed.

Hinojosa outlines barriers to EBP including possible inapplicability of the established levels of evidence given the important qualitative and individualized nature of OT practice.  He correctly references the revised model that Tomlin and Borgetto (2011) presented that has already addressed this concern.  Tomlin and Borgetto (2011) proposed a model of a 'Research Pyramid' that includes and expresses a value for qualitative inquiry, so I am not sure why this is still identified as a barrier by Hinojosa.

Hinojosa also criticizes systematic reviews for the potential of individualized bias and inclusion criteria errors but that is kind of like shooting fish in a barrel.  Of course there will be the potential for bias in nearly every endeavor; the potential should not preclude adoption of methods that are otherwise sound as long as we maintain the ability to study and examine and even criticize the reviews!  The point here is that even though there can be potential for 'problems' we should not take that as an invitation or opportunity to reject the method.

Evidence based practice is a standard and an objective - not an absolute.  The reason why we know this is precisely related to the creation of the standards which includes reference to 'levels of evidence.'  We can engage in academic conversations about whether or not the standards apply to the way that we practice but I think a more important method for framing the question is 'What happens when we step too far away from evidence-based models?'

Since I am a street level practitioner I would like to outline some things that happen when we step away from evidence.  I see these things on a daily basis in my practice.  Consider this:

When we step away from evidence based practice we are free to ignore good research and the efforts of many scientists who are attempting to better inform our practice strategies.  That leaves us free to reject the fact that some interventions are simply not supported.  What is the practical application of this?  Well, if we reject evidence we are liberated to use treatment strategies that are not effective and we return to a lower point of theory driven decision making.  Look no further than the state of pediatric practice to see this in action:  we had a theory about a 'brushing' protocol that was sold like snake oil for over twenty-five years to thousands upon thousands of practitioners who paid money to learn the methods.  Those thousands upon thousands of practitioners went out into the world and brushed an uncounted number of children - and justified their intervention based on what they learned from experts who were applying their 'theories.'  They also brushed those uncounted children with the promised notion that 'research is coming!!!!' which was the mantra chanted in those continuing education courses - which I remember specifically because I attended one of the first ones back in 1989.  Well fast forward to 2013 and in a retrospective analysis there has been an ENTIRE INDUSTRY developed around this intervention.  Millions of dollars have been spent on continuing education and buying the 'right' brushes.  It is impossible to calculate the dollar figure impact of how many sessions have been billed for this treatment.  Now, what do we have to show for this treatment that is based on theory?  We have absolutely NO EVIDENCE that it is even effective.  In fact, it is not even referenced in our most basic entry level pediatric text books.  I didn't edit those textbooks so I don't know what the decisions were related to why this extraordinarily mythical intervention was not included, but I suspect it had something to do with the fact that there is absolutely NO EVIDENCE that this is effective, and in fact those studies that have been done essentially show that there are no consistent effects that can cause us to have confidence in brushing with a 'particular method' and using a 'particular brush.'

Dr. Hinojosa is an academic and I am sure he must have contact with students who go out into the field and practice occupational therapy.  What is an academic response to a student who looks in the basic pediatric textbooks and can't even find a reference to a brushing intervention that is so popularized by clinicians?  Do we tell students that it is 'OK' to brush children based on our theories, even though our theories have not been supported by research - YET?  EVER?  MAYBE SOMEDAY???

HOW LONG DO WE WAIT???  Is 25 years long enough to wait before a clinician 'gives up' and assumes that this is snake oil and that research is actually NOT coming???

Here is another way to conduct the analysis in step with concerns that our practice is directed at an individual level and is therefore difficult to measure quantitatively.  What I really want Dr. Hinojosa to reconsider is the impact of this on a family - a topic that he has studied (Hinojosa, 1990) in an article that I rather enjoyed.  I evaluated a three year old child this week who has multiple developmental delays related to prematurity.  Among many other problems, this child can not hold a toy because any time any object or person touches her hands she pulls them away.  The parent WANTS the child to hold a toy and WANTS the child to play and not have this difficulty.  At that moment I was confronted with a practice dilemma: do I practice by evidence or do I practice by mythology?  What do I recommend???  I know the theory and am no clinical slouch.  I understand Melczak and Wall (1965), I understand the animal research on deep pressure and calming (Grandin, 1992), and I also understand the theory of behavioral conditioning or placebo if that is what is in play, and I understand our mythic interventions that include brushing but that have no direct research support after 25 years. 

So what are we supposed to do here, continue with mythic-based practice and subject the public to treatment strategies that any science-oriented thinker has long ago rejected?  More specifically, with this child lying in the bean bag chair in front of me while the parent expresses her sadness that the child can't even hold onto a toy and play, what am I supposed to do?

Well at that moment, even though I can't find the reasons in my head to justify the use of brushing, I almost wanted to say the words to the family: 'Well you can TRY this.  We don't really have any supporting evidence but some people find that it is helpful.'  I thought of the study done on weighted vests that showed even though there was no change in the child at least it made the parents feel good (Stephenson & Carter, 2009).

Then the parent brought me back to reality.  Even before I could say anything she said, "Please don't ask us to try brushing.  Every therapist we have ever seen wants us to brush this child and I can't tell you how many times we have tried it.  Some of them even blamed us for it not working because they said we weren't following the protocol closely enough."

 If I am using ANY kind of evidence, even the qualitative kind, shouldn't I at least remember that parents 'know' more than therapists when it comes to this topic?  Shouldn't I remember that when considering adherence to a brushing home program that a qualitative study indicated that parents are concerned with efficacy and response to the intervention while therapists were more concerned with whether or not the family had the time and was actually following the protocol (Segal & Beyer, 2006)?

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I don't believe that there is any paradox or even dilemma.  In consideration of quantitative and qualitative evidence, if that even matters, is that the evidence seems to be useful for guiding our practice.  Or informing practice, at least, which Hinojosa seems to support.

I just want him to consider that publication of an opinion piece like this can lead to some practitioners having some sense of being justified in resorting to a 'theory-based' methodology and rejecting calls for scientific thinking.  Theory-based methodologies have their time and place - but we need to be careful that we are not feeding pseudoscientific models just because someone can dream up a proposed theoretical justification for something.  That is happening a lot, particularly in pediatric occupational therapy practice, and there is not enough discussion about the problem. 

Questioning the value of evidence based practice has the potential to be a giant step backward, and in total, I think the Tomlin and Borgetto model (2011) already addressed every concern that Hinojosa raised in his essay.


References:


Grandin, T. (1992). Calming effects of deep touch pressure in patients with autistic disorder, college students, and animals. Journal of Child and Adolescent Psychopharmacology, 2(1), 63–72.

Hinojosa, J. (1990). How mothers of preschool children with cerebral palsy perceive occupational and physical therapists and their influence on family life. Occupational Therapy
Journal of Research, 10, 144–162.

Hinojosa, J. (2013). The issue is... The evidence-based paradox.  American Journal of Occupational Therapy, 67, e18-e23.

Melzack, R., & Wall, P.D. (1965). Pain mechanisms: a new theory. Science, 150, 971–979 .

Segal, R., & Beyer, C. (2006). Integration and application of a home treatment program: A study of parents and occupational therapists. American Journal of Occupational Therapy, 60, 500–
510.

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.

Tomlin, G. & Borgetto, B. (2011). Research pyramid: A new evidence-based practice
model for occupational therapy. American Journal of Occupational Therapy, 65(2), 189-196.