Friday, October 29, 2010

Book Review: Tuck Me In!

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

Tuesday, October 26, 2010

Occupational Therapy Assistants in NY State: A SUPER PROFESSION

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.

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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.

Monday, October 18, 2010

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

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




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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.

Saturday, October 02, 2010

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

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?