Saturday, December 18, 2010

Evidence of need for system change: Another CSE case study

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:
  1. long history of therapy participation because of difficulty achieving skills
  2. Notable motor delays
  3. Notable sensory processing differences
  4. 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.

Wednesday, December 08, 2010

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

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:
  1. Wilbarger Brushing Protocol
  2. Listening to music, such as Mozart
  3. Diaphragmatic breathing exercises
  4. Early release from school so she isn't overwhelmed
  5. Increased intake of water
  6. 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?

Saturday, November 06, 2010

Liveblogging at the student conclave

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!

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,, 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.


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., (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.


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.


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. 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:

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:

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.

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?

Tuesday, September 28, 2010

A promise to Dolores

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.

Friday, September 17, 2010

Annual update: Another massive hike in health insurance rates


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.

Tuesday, September 14, 2010

Somewhere that's green.

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.

Wednesday, August 11, 2010

The Billy Williams Chair

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.

Monday, August 09, 2010

The erosion of special education services in New York State

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.

Tuesday, August 03, 2010

Child health professionals need to do more to help parents

A sad story has been in the news recently about a parent who allegedly murdered her children who were diagnosed with autism. 911 tapes and other evidence indicate that the family was having difficulties coping with the diagnosis and care of these children.

Several years ago I put some thoughts together regarding efforts I wanted to make in my own private practice to support mental health of parents. I based my original ideas on Leading Health Indicators of the Healthy People 2010 project. Perhaps it is time to assess our progress and lack of progress on these indicators. I understand that Healthy People 2020 is due out this year - and we need to remember that it is not enough to just talk about how these issues are important. We need to actually DO THINGS that will help to improve the health of children and families.

Here were my thoughts on this subject five years ago. I am afraid that if this case in the news now is any indicator that we still have some work to do:


Parents who have children with disabling conditions are at an increased risk for psychopathology as compared to parents with typically developing children (Fuller and Rankin, 1994). Parenting occupations are more complex and challenging when children have disabling conditions; increased demands on parents contribute to changes in normal parent-child interactions (Anastopoulos, Shelton, DuPaul, & Guevremont, 1993). In addition to the directly negative impact that stress causes to the parent, parental stress has been associated with increased child behavioral problems and intergenerational psychopathology, including depression (Baker, 1994; Ellenbogen & Hodgins, 2004).

Many child-centered and parent-centered factors may have a negative impact on development of normal parent-child interactions. Parent-centered factors include emotional and mental health needs that are unmet or poorly addressed by health professionals that can impact interactions. Although research shows that parents are not always able to follow through on professionals’ recommendations, it is known that they appreciate helpful suggestions for activities that promote child development or make caregiving easier (Humphrey & Case-Smith, 2001, p. 123). Shearn and Todd (1997) identified that there are long-term implications when a child has a disability because the parenting role is extended beyond typical expectations. They also state that the expectation of professionals contributes to levels of perceived stress, indicating that the parent’s needs are not being consistently met.

Several occupational therapy authors have also discussed the particular stresses upon parents whose children are disabled and the impact this has on the orchestration of their occupation (Esdaile, 1993; Primeau, 1998; Larson, 2000; Segal, 2000, Cronin, 2004). This literature has added significantly to occupational therapy’s understanding of parenting occupations through narrative analysis.

Relationship to Leading Health Indicators

According to Healthy People 2010 Leading Health Indicators (USDHS, 2002), mental health is defined as “a state of successful mental functioning, resulting in productive activities, fulfilling relationships, and the ability to adapt to change and cope with adversity. Mental health is indispensable to personal well-being, family and interpersonal relationships, and one’s contribution to society.” Mental health was chosen as a Leading Health Indicator because conditions such as major depression are the leading cause of disability among adults in developed nations such as the United States (USDHS, 2002).

Objective 18-9b of the LHI specifically targets the recognition and treatment of depression, which is reportedly the most unrecognized and untreated mental illness cited in the report. Depression is a leading cause of mental illness in women, affecting them at a frequency twice greater than men (Weissman & Klerman, 1992). Occupational therapists often interact with mothers as the primary caregivers to children, making awareness of maternal mental health issues particularly important for practice.

Developing wellness programs that facilitate parental mental health is critical in supporting the objectives of the Healthy People 2010 initiative. Little progress was made toward Healthy People 2000 objectives that focused on controlling stress and seeking treatment for depression (USDHS, 2002). The Centers for Disease Control and Prevention statistics (as cited in USDHS, 2002) indicate that there was a slight decline in the proportion of nurse practitioners who typically inquire about the parent-child relationship and a greater decline in the numbers of practitioners who ask about affective functioning in their adult patients at all. This indicates that an important need is present regarding parental mental health that is not being met.

Contextual influences

The Healthy People 2010 report (USDHS, 2002) provides strong political contextual support for programs that facilitate parental mental health and prevention of illnesses including depression. The stresses of everyday life are a challenge to all parents and all children, and the fast-pace (tempo) of modern life has a negative impact on society’s collective ability to meaningfully interpret and experience normal occupations (Clark, 1997). This fact underscores the importance of addressing the mental health needs of parents whose children have disabilities. Killegrew (2000) identifies that broad ecocultural and contextual factors including perceived time availability, child-rearing strategies, and socioeconomic capital were more likely to dictate family routines than a child’s skills or abilities. Therefore there is substantial benefit to be gained by providing contextual interventions that promote and support parental mental health and wellness. Additionally, as parents of children who have disabilities have high levels of stress as measured on standardized instruments, parental stress management should be considered as an integral part of all occupational therapy programs for children who have disabilities (Esdaile & Greenwood, 2003).

One potential contextual obstacle to consider is that some research indicates that parents may be hesitant to discuss their stress and associated depression for fear of being reported to child welfare agencies (Heneghan, Mercer, & DeLeone, 2004). However, these researchers also indicate that this effect is partially mediated by a trusting relationship with the practitioner. Despite this, parents appreciated support that they did receive, even when it was only in the form of general written information and resources. These findings provide important contextual information to consider in developing an occupation-based program that supports parental mental health.

Existing programs and strategies

The principles behind the inclusion of parent education and support into an overall occupational therapy program was described by Cohn (2001), who discussed the benefits of waiting room experiences of parents while their children were receiving occupational therapy. Case-Smith & Nastro (1993) described dissatisfaction with occupational therapy when parental needs were not being met; they suggest that open communication and consistency are important factors to consider in promoting parental satisfaction. Despite professional calls for a focus on the occupation of parenting (Llewellyn, 1994), there is not much documentation in the occupational therapy literature regarding use of parenting skills as a therapeutic means. Hanna and Rodger (2002) reviewed the occupational therapy literature and identified that the available evidence regarding the efficacy of occupational therapy intervention for parent training and collaboration is limited. However, research completed outside of the occupational therapy profession supports the use of parent training programs for facilitating parental mental health, particularly in the short term and when the groups are offered to mothers (Barlow & Coren, 2003).

Relation to health promotion model

An ecological model as described by Gorin (1998, p.21) incorporates the interrelationships between parents and their environments that lead to stress and may threaten mental health. This type of model considers the environment from a systems perspective, including institutional, social, and cultural factors. Bronfenbenner (1977) suggests that development occurs within a context or ecology. The family’s microsystem, including the local community institutions such as school, religious institutions and peer groups, are all critical influences on health and well-being. The interaction of these various systems creates forums for development to occur, or not occur. These external factors may constitute significant barriers for parents of children who have disabilities; this makes the ecological model most appropriate to consider for any program proposal.

As an example, institutional factors could include local influences regarding availability of resources in a community and even the availability of professionals to provide services. Specifically, local municipalities all interpret IDEA in accordance with their own district policies and procedures. Navigating local special education systems can be highly frustrating to parents and the associated stressors related to obtaining appropriate services for a child who has a disability can be a drain on mental health.

OT centered wellness intervention

Based on the evidence presented herein, there is a strong need for specific attention to be offered to the mental health of parents when their children have disabilities. Generic support has always been a component of occupational therapy intervention in the form of verbal discussion regarding child progression in treatment, or to offer suggestions for a home program. It is now evident that parents need more directed efforts to support their mental wellness. Robust parent education initiatives for all families that receive services is needed.

Anastopoulos, A., Shelton, T., DuPaul, G., & Guevremont, D. (1993). Parent training for attention-deficit hyperactivity disorder: Its impact on parent functioning. Journal of Abnormal Child Psychology, 21, 581–596.

Baker, D. (1994). Parenting stress and ADHD: A comparison of mothers and fathers. Journal of Emotional and Behavioral Disorders, 2, 46–50.

Barlow, J. & Coren, E. (2003). Parent-training programmes for improving maternal psychosocial health. (Cochrane Review) In: The Cochrane Library, 2003. Updated quarterly. (Issue 2.).

Bronfenbrenner, U. (1977). Toward an experimental ecology of human development. American Psychologist, 32, 513-530.

Clark, F. (1997). Reflections on the human as an occupational being: biological need, tempo, and temporality. Journal of Occupational Science, 3, 86-92.

Cohn, E.S. (2001). From waiting to relating: Parents’ experiences in the waiting room of an occupational therapy clinic. American Journal of Occupational Therapy, 55, 167-174.

Cronin, A.F. (2004). Mothering a child with hidden impairments. American Journal of Occupational Therapy, 58, 83-92.

Ellenbogen, M., & Hodgins, S. (2004). The impact of high neuroticism in parents on psychosocial functioning in children: Family-environmental and genetic pathways of intergenerational risk. Development and Psychopathology, 16, 113-136.

Esdaile, S.A. (1994). A focus on mothers; their children with special needs and other caregivers. Australian Occupational Therapy Journal, 41, 3-8.

Esdaile, S. A., & Greenwood, K. M. (2003). A comparison of mothers' and fathers' experience of parenting stress and attributions for parent child interaction outcomes. Occupational Therapy International, 10, 115-126.

Fuller, G. B., & Rankin, R. E. (1994). Differences in levels of parental stress among mothers of learning disabled, emotionally impaired, and regular school children. Perceptual & Motor Skills, 78, 583-92.

Gorin, S. S. (1998). Models of health promotion. In S. S. Gorin & J. Arnold (Eds.), Health promotion handbook (pp. 14-38). St. Louis, MO: Mosby.

Hanna, K. & Rodger, S. (2002) Towards family-centred practice in paediatric occupational therapy: A review of the literature on parent-therapist collaboration. Australian Occupational Therapy Journal, 49, 14-24.

Heneghan, A.M., Mercer, M.B., & DeLeone, N.L. (2004). Will mothers discuss parenting stress and depressive symptoms with their child’s pediatrician? Pediatrics, 113, 460-467.

Humphrey, R. & Case-Smith, J. (2001). Working with families. In J. Case-Smith (ed.), Occupational Therapy for Children (pp. 95-135). St. Louis: Mosby.

Killegrew, D.H. (2000). Constructing daily routines: A qualitative examination of mothers with young children with disabilities. American Journal of Occupational Therapy, 54, 252-259.

Larson, E.A. (2000). The Orchestration of Occupation: The Dance of Mothers. American Journal of Occupational Therapy, 54, 269-280.

Llewellyn, G. (1994). Parenting: A neglected human occupation. Parents’ voices not yet heard. Australian Occupational Therapy Journal, 41, 173-176.

Primeau, L. A. (1998). Orchestration of work and play within families. American Journal of Occupational Therapy, 52, 188-195.

Segal, R. (2000). Adaptive Strategies of Mothers with Children with Attention Deficit Disorder: Enfolding and Unfolding Occupations. American Journal of Occupational Therapy, 54, 300-306.

Shearn, J., Todd, S. (1997). Parental work: an account of the day to day activities of parents of adults with learning disabilities. Journal of Intellectual Disability Research, 41, 285-301.

Travis, J. & Ryan, R. (2004). Wellness workbook: How to achieve enduring health and vitality. (3rd. edition). Berkely, CA: Celestial Arts.

U. S. Department of Health and Human Services. (2002). Healthy people 2010: Understanding and improving health. (2nd ed.). Washington, DC: U. S. Government Printing Office.

Weissman, M.M, & Klerman, J.K. (1992). Depression: Current understanding and changing trends. Annual Review of Public Health, 13, 319-339.

Tuesday, July 27, 2010

Ongoing series: Unintended consequences of the Affordable Care Act

Government and bureaucracy, even when it is acting with purported good intention, tends to be a poor predictor of human behavior. This needs to be considered before we continue to hand over responsibility for our health care system to our politicians.

Why couldn't the bureaucrats see this headline happening:

Some insurers stop writing new coverage for kids
Ahead of requirement to cover kids with medical problems, some insurers drop out

Now that certain requirements have been put in place on insurance companies, a situation has been created where parents who are interested in saving money on premiums may opt for single coverage and then if some event occurs necessitating medical care for children they can purchase an insurance policy for their children without restriction.

Insurance companies see the potential abuse of parents not paying into the insurance pool and then only obtaining coverage 'on the way to the hospital' and so the insurance companies are now refusing to write 'children only' policies. From their perspective this will force families to pay actual family premiums and will prevent abuses. Alternately, they are lobbying for 'open enrollment' restrictions for children-only policies.

Of course the government spin on this is to make the insurance companies out to be evil for 'dropping coverage for children.' Actually, they are only trying to preserve their actuarial tables that allow them to stay in business.

In this particular instance, the private market previously controlled and managed this problem with pre-existing condition restrictions. To be sure there was a need to reform this so that consumers had adequate protections, but now we can see how inept some of the reforms that were put into place actually are.

All of this will continue to drive up health care costs. The government has rarely been able to do things more efficiently than the private sector - stay tuned for more unintended consequences that will end up skyrocketing our health care costs.


Alonso-Zaldivar, R. (2010, July 23). Some insurers stop writing new coverage for kids. Yahoo! Finance. Retrieved from