Thursday, January 29, 2009

Developmental attention and visual auditory synesthesia

Caveat lector: This post presents more questions than it does answers. It may also be appropriate to ignore all this theorizing and file this separately under 'Kids say the darnedest things.'

A colleague asked me to review one of her cases because the child was presenting with some peculiarities. This four year old child's main difficulties are that he is 'overly sensitive,' as well as having some functional problems with attending skills and fine motor coordination. The parent perceives the child as 'different.' This could be underscored by the child's recent statement of "Do you hear my eyes blinking?" and reporting that watching his father's eyes blink sounded differently than the sound of his own eyes blinking.

I am aware of the concept of synesthesia - and believe that most of what I have read is more related to color perception of words and other odd cross modal perceptions. I had not heard of auditory perceptions based on visual flicker but came across some work by Melissa Saenz and Christof Koch. They have an online test for this phenomenon at http://www.klab.caltech.edu/~saenz/hearing-motion.html

Now I don't know if this child has visual-auditory synesthesia but I thought that the child's statements were interesting. It might be pertinent to this child's development because the process of attending involves 'learning' which environmental stimuli are most pertinent and salient. In other words, we 'learn' that the teacher's voice is to be given more sensory 'weight' than the whirring of the ventilation fans in the classroom. So, if synesthesia is an actual neurological phenomenon - do synesthetes have any greater risk of developmental attentional difficulties? Presumably, they would have 'extra' cross modal information to sift through while determining which sensory input was most important.

In an interesting online interview, Dr. Simon Baron-Cohen talks about linkages between autism and synesthesia. All of this relates to his other discussions relating to central coherence and Theory of Mind - the idea here being that someone who can't choose salient stimuli for attending obviously can't form correct perceptions, or form contextually appropriate perceptions.

As autistic spectrum disorders occur on a spectrum of severity, could my colleague be working with a child who has mild synesthesia that is causing sensory misperception and confusion, which in turn is causing some developmental attending difficulty?

Or is it just cute that he can hear people blinking?

Wednesday, January 28, 2009

Psychosocial occupational therapy in schools

I am not certain how many problems can be solved at odd hours of the morning, but it is 4:30am and I can't shake some concerns I have about psychosocial intervention models in schools.

According to all data, occupational therapists are not frequently employed in psychosocial practice settings. There are all kinds of complexities behind this including

  1. historical lack of parity for reimbursement in mental health systems that drove professionals out of psychosocial practice
  2. lost opportunities for OTs to have legislative inclusion as QMHPs
  3. lack of vision and leadership in articulating the occupational therapy scope of practice
  4. analysis paralysis and inability to implement plans to reverse negative practice trends
  5. lack of mental health fieldwork mandates for occupational therapy students

These contributing factors can all be debated - and there are chicken and egg conversation to be had - but these still represent some of the most salient issues.

Pragmatically I see that there are rather large system needs. School systems become the de facto point of intervention for many mental health conditions (much to the dismay of schools who are poorly equipped to provide these services). The American Academy of Pediatrics wrote an interesting policy paper on this subject but I am not sure how well this has translated into action - and by action I mean movement toward sophisticated and functional interventions for mental health problems in schools.

We are lacking practice models and this is an uncomfortable position to start from. As the rest of the educational community evolves conversations about outcomes assessment and RTI models in special education I am not sure that we even have basic agreements about mental health interventions in schools. Certainly these fall within the special education purview, but what is the occupational therapy model? If a seven year old child has a bipolar disorder we assess their perceptual and motor and sensory processing skills that impact occupational participation - most OTs have training to understand that much - but how do we assess social functioning and ability to self regulate? And if we are lacking those assessment tools then how does our intervention fit into an RTI model?

It gets worse - because when the seven year old turns fourteen the problems have different complexity: now the child may have drug use, impulse control difficulties, physical or behavioral aggression, or worse. The way that a child holds a pencil doesn't seem to have the same relative level of importance in adolescence in context of more complex problems. Since we don't have many standardized assessments that measure self esteem, decision making, social skills, and progression in an occupational choice process - what does the occupational therapist do?

Now I know the answer to this question - because I am old and I went to school 20 years ago and I had a mental health fieldwork. I understand mental health interventions and although there may be a paucity of good adolescent mental health assessment tools I can fudge it in the interest of working on the problems and hope for a day when I have better tools to work with. This puts me at odds with a system that is going to demand outcomes based assessments but I can make it work.

However, young therapists don't have the contextual understanding of occupational therapy as a mental health intervention - and don't have those same practice models to fall back on. The danger of this is that children, at their most vulnerable states, will be at risk of occupational therapy that 'misses the mark.' Occupational therapists who don't know mental health interventions will only assess the fine motor skills of adolescents and there will be a real risk that they will not develop interventions that address the most salient needs of the children.

As a corollary - there was an interesting study by Liberman et al (1998) where there was a comparison of a creative arts based OT program and a pragmatic living skills training that was carried out by paraprofessionals under the supervision of an OT. The article states that the creative arts based program focused on participation in arts and crafts and discussion of feelings and goals. Not surprisingly the living skills training program was more effective across several measures - but the authors oddly concluded that paraprofessional living skills training was more effective than OT. A more correct conclusion is that OT focusing on living skills training was an effective intervention model - and it could be carried out with the use of paraprofessionals at a low cost! That interpretation was not offered - and I am certain that there was untold damage when many psychiatrists saw an abstract that showed how OT was ineffective in a well designed RCT.

School based practitioners who use an inappropriate model of intervention for children and adolescents with mental health problems run the risk of similar marginalization. How long will it be before someone completes a study that compares school based OT (that will invariably involve Brain Gym and Wilbarger Deep Pressure Protocols) with a functional living skills curriculum? Of course the school based OT will be determined to be 'less effective' and another opportunity to offer a functional service to a needy population will be lost.

We can work on this problem by articulating functional practice models that make sense and address mental health concerns of children in schools. We can strengthen our professional skill set by reinforcing psychosocial practice during fieldwork mandates. We can work toward using or if needed developing standardized assessments so that our mental health interventions in schools can move toward a level of sophistication where we can participate in reliable outcomes assessment.

If we fail to act we will be replaced. That doesn't matter for us nearly as much as it matters for children who can benefit from psychosocial occupational therapy interventions in schools.



References:

Committee on School Health (2004). School-based mental health services. Pediatrics, 113, 1839-1845.

Liberman, R., M.D., et.al. (1998). Skills training versus psychosocial occupational therapy for persons with persistent schizophrenia. American Journal of Psychiatry, 155, 1087-1091.

Friday, January 09, 2009

How do I choose an occupational therapist?

I received this question in email the other day:

Any tips (in a past or future posting on your blog) about how a parent can go about choosing an OT? We've been taking our 5-year old autistic son to an OT who is very nice and caring and with whom our son works well, however, she has recommended Wilbarger brushing, Therapeutic Listening and books written by Jean Ayres. Also, there seems to be no concern at all for when therapy might end - we have been paying privately for the past 2 years and just now got insurance that covers OT. I would like to find a new OT and would appreciate it if you could give some specifics about how to find one who is more interested in evidence-based approaches. It sounds like a judicious use of Wilbarger would be ok, taking into account the attitude of the OT toward such approaches.

In my opinion, all occupational therapy should have an end point. End points might look very different depending on the nature of the disability and the needs of the child at different times in their development. For example, a child who has cerebral palsy may benefit from a lot of intervention to help achieve basic mobility and developmental motor skills when they are infants and toddlers. Therapy may need to focus on school mobility or use of computers to learn adaptive skills when the child is in elementary school. At some point in time the child may have a surgery to correct scoliosis or to lengthen tight muscles, and there may be a need to re-learn motor and self care skills following such a procedure. When the child is a teenager, therapy may need to focus on activity configuration, leisure participation, and occupational choice.

The point is that at each time of 'need' for occupational therapy there must be a defined set of goals. These goals should be developed collaboratively with the child and the family. The goals should be understandable to the family, reflect the current needs of the child and family, and have an identified end point.

So, for any given child who has a chronic disability, the need for occupational therapy will change over time along with the goals of the child and family. There needs to be progress made toward the goals that are established. If there is no progress, then it is time to establish new intervention methods - or perhaps to establish new goals - or perhaps to stop intervention!

As for insurance coverage - there are very few payment programs (outside of public Medicaid) that will pay for this kind of ongoing therapy intervention when a child has a chronic or developmental disability. Rather, insurance companies tend to pay for medically related and short term interventions. There are exceptions to this rule and you need to examine your own health insurance policy to determine what it covers. I encourage families to know their coverage well and make therapy decisions based on a detailed analysis of resource allocation. Resources, by my definition, include the monetary cost of intervention, the actual time needed to participate in the therapy program (in and out of the intervention setting!), and the availability of the child and family based on other activities and obligations. When families look at resources from this broad perspective they are usually able to make better decisions about when the best 'timing' is to participate in a therapy program (particularly when the need is developmental, and not medically acute). Your occupational therapist should be willing to consider all of these factors with you and help you come to a decision.

Occupational therapy is similar to other health related professions in that there is a strong need to develop more evidence about what interventions work best. As standardized protocols and consensus on "best practice" are not always available, and because of the highly individualized nature of occupational therapy intervention, it is important for families to have ongoing and open conversations with therapists about what evidence exists for any suggested intervention protocol. Families should be able to get honest feedback from their therapists about evidence regarding interventions and then factor this information into their analysis of resource allocation. Certainly, families want to know when interventions are relatively well defined, accepted, and proven - and when they are not! They may make different decisions about resource allocation when they are informed. Occupational therapists should help weigh the evidence about any intervention so that the families can make decisions that make sense for their situations.

Given this perspective, many interventions that lack adequate evidence might be worth 'trying' but of course this is dependent on the broadly defined resources of the family. The ethical occupational therapist will tell a family about the lack of evidence for therapeutic listening approaches or Wilbarger 'deep pressure protocols.' However, as there has been some anecdotal evidence that these methods can sometimes help, parents can choose whether or not to pursue this kind of intervention. Or, a family may choose to ask a therapist to work on functional skills and developing a home program of learning to complete targeted self care skills using a backward chaining method - which has stronger evidence of success.

Families should consider the therapist's willingness to openly discuss all these issues. Parents should avoid any health care practitioner that blindly subscribes to a single practice model and is unwilling to candidly discuss issues of evidence.

Wednesday, January 07, 2009

An example of a job well done!

OK, I admit that I snipe in here sometimes - but it is because I believe in my profession and I want to see it represented in what I consider to be positive ways - but this blog always represents just my opinion anyway - one voice in a very large universe of ideas.

Well today I want to turn away from sniping and instead give an unsolicited thumbs up to Toni Schulken who is a pediatric OT in North Carolina. I was browsing through Wal Mart today picking up a curtain rod for the office and I wandered past the office supplies section and some writing paper caught my attention.

Mead is marketing and selling some writing paper - some of it has raised ruling, some has ruling of various widths, some has highlighted margins, etc. You can view some of their products here. I am not endorsing this product because that is not what this blog is about - I really haven't used the paper and I haven't seen all of it but from my quick glancing I am certain that some of it is great for the intended purposes.

What is impressive though is that Toni has apparently helped develop these materials and on the product it clearly states that she is a pediatric occupational therapist and of course her OTR credentials are shown as well.

Now there is no shortage of various types of writing paper in all the catalogs that we get - but Toni's work is commercially available in Wal Mart - and that impresses me. I think that it sends a great message to the public about how OTs are handwriting experts. It is great marketing for the occupational therapy profession, and we should all pause to thank her.

Friday, January 02, 2009

Funding difficulties persist for NY State Early Intervention Program

Background reading: New York State's Medicaid Problem in the Schools

Governor Patterson's proposed budget cuts to the Early Intervention program have professionals across the state wringing their hands - read about the speech therapy association's concerns here. Although there are no public documents available currently from occupational therapists I have been sent a lot of internal communication from NYSOTA about that group's concerns.

Some of the concern is about the possibility of implementing family cost sharing for EI services. New Jersey advocacy groups are already on the record against these models. Reasonable cost sharing is a functional model - but of course there are always individual exceptions and sad stories to any cost sharing model that will make the front pages of the 'Living' or 'Family' section of local papers and invariably lead to embarrassment of local officials, if not lynching. It is also true that a cost sharing model, unchecked, will drive people out of the program. There needs to be a balance.

There is additional concern about the implementation of eligibility standards for receiving services. The current standards are the statistically confused and meaningless 25% delay in two areas, 33% delay in one area - or use a standardized test - or obtain a 'qualifying diagnosis.' Professionals have been manipulating the system for years using the improper method of calculating age equivalency to determine percent of delay. Ironically, therapy professionals have made a lot of noise about the meaninglessness of this statistical manipulation but now perhaps they don't like the result of their advocacy for better statistics. There are some articles referenced at the end of this post for additional reading - full text versions of the articles aren't linkable.

All this statistical talk about program eligibility and discussion of cost sharing models probably sounds like so much confusion to many consumers and practitioners. The public doesn't understand - and is being fed poor information from the newspapers. In this article from the Albany Times-Union, David Smith writes that the solution involves increased federal allocation of Medicaid dollars. What he doesn't write is that without increased federal allocation the state will simply cut their own Medicaid costs and leave it to the counties to pick up the tab. So either we pay increased taxes for ballooning federal programs or we pay increased property taxes at the county level. For the politicians it is only about shifting the burden to someone else's cost center - not really controlling the actual cost of the program.

So no one likes the situations that need to be faced in order to control costs, no one wants to be responsible for raising taxes, and no one wants to limit services for these children. The Governor proposes a budget that everyone hates and there is no buy-in from the constituencies because they aren't really participating in a real solution.

In order to find a solution, professionals and politicians and parents - what I call The Mighty Triumvirate of 'P' - need to develop a willingness to work together. A final solution will include reasonable cost sharing, reasonable eligibility requirements, and reasonable funding. Any solution that is dictated from a political office without the involvement of all stakeholders is not likely to be viable in the long term.

Historical note: my original entry on this topic was two and a half years ago. It is only getting worse.


Additional References:

Maloney, E. and Larrivee, L. (2007). Limitations of Age-Equivalent Scores in Reporting the Results of Norm-Referenced Tests. Contemporary Issues in Communication Sciences and Disorder, 34, 86-93

Maring, J. R. and L. Elbaum (2007). Concurrent validity of the Early Intervention Developmental Profile and the Peabody Developmental Motor Scale-2. Pediatric Physical Therapy, 19, 116-120.

McCauley, R.J., & Swisher, L. (1984). Use and misuse of norm-referenced tests in clinical assessment: A hypothetical case. Journal of Speech and Hearing Disorders, 49, 338-348