Saturday, April 28, 2012

Occupational therapy blogs you must read.

This weekend I participated in a presentation with four OT colleagues at the AOTA National Conference in Indianapolis.  Conference can be a little stodgy at times- but not with this group!

I want to publicly acknowledge the OT Social Media Awesomeness of this group of people who obviously know how to have fun and be awesome/inspirational/educational at the same time:

Cheryl Morris: http://otnotes.blogspot.com
When I saw Cheryl's level of extreme organization and skill in managing multiple information sources and easily coordinating a cascade of incoming information I was just amazed.  Then I wanted to hire her to help me organize my office!  She was the glue of the group and did a fantastic job getting it all initially coordinated.

Anita Hamilton: http://technots.blogspot.com
OK, so when I met Anita she was in her pajamas, effectively modeling the garb that could be used to conduct a groundbreaking and worldwide online occupational therapy conference (www.ot4ot.com) from the comfort of her own home.  She is inspirational, knowledgeable, brilliant, and it was an absolute privilege being able to work with her on the AOTA presentation!

Karen Dobyns: http://otstudents.blogspot.com
Karen is the world-famous former student and now full-fledged OT colleague who is still hanging onto her title as Miss OTPF!  Karen was a lot of fun to meet and I am not sure if she knows yet how powerful her idea is about Learning Out Loud - so I will be excited to watch her continue with her blogging and learning.

Erik Johnson: www.armyotguy.com
Erik is the rock star of the group - his ability to project himself and his promotion of the profession in such a charismatic and powerful way was amazing to watch.  I have an internally automatic respect and appreciation for people who serve in our armed forces.  Erik reinforces every positive feeling I have and it was an honor to work with him in this group.

So I hope I have not embarrassed any of them with my words; I simply mean to recognize and thank them all sincerely.   What a fantastic group of people!  Go to all of these blogs and bookmark/subscribe to them.  You will not regret it.

On tin foil hats and sensory integration

There was an open forum at the AOTA conference in Indianapolis so I took the opportunity to raise a question about the profession's advocacy regarding research on sensory integration. My comments were:
I appreciate the advocacy offered by AOTA regarding the situation in North Dakota where a coordinated letter writing campaign contributed to a BCBS intermediary indefinitely holding a decision that would label sensory integration as 'investigational.' However, it is true that Cigna, Aetna, United Healthcare, and nearly every other BCBS intermediary labels sensory integration as an investigational intervention. Additionally, the National Autism Standards Project and the NY State Clinical Practice Guidelines for Early Intervention also labeled sensory integration as investigational. With so much of the larger world identifying something as investigational, is it possible that AOTA places its members in an awkward position by continuing its advocacy without a more tempered approach that acknowledges the current state of the research? Also, given the fact that other professional organizations are not hesitant to label interventions as investigational (like the speech therapy profession with 'therapeutic listening' interventions), does it hurt the credibility of AOTA to not take a more moderate position in its advocacy?

The response from the AOTA panel was disappointing, but not entirely unexpected. Dr. Florence Clark retorted that these external bodies were all making their decisions based on outdated research. I attempted to express that some of the most recent research has been cited by these insurance companies and they have concerns about sample sizes and statistical power. Then Dr. Clark expressed that there were powerful political forces that were working against any interventions that were not behaviorally based (e.g. ABA). I can accept that some of that may be true to some degree, but that certainly doesn't explain why the opposition is almost universal. It seems a little silly to think that there is a vast conspiracy against sensory integration. Finally, Dr. Clark also expressed that some research that has been labeled 'promising' had no better (and in some cases) less evidence than sensory integration does. She went on to state that according to some criteria it would not be possible for ANY interventions to achieve an acceptable level of 'evidence.'

All of this was very interesting conversation, but at the end of the day you still have therapists in nearly every part of the country who can't submit occupational therapy claims that are coded for sensory integration intervention. They will be denied, and there is no disputing that fact. I was disappointed because I heard a lot of defensiveness and a lot of excuse-making and a lot of blaming the vast conspiracy of people who are against sensory integration. I didn't hear an answer to the question and I didn't hear any level of acknowledgement that we have failed to conduct adequate research that supports the intervention. All I heard was continued blind adherence to an intervention that the broad populace of the planet believes does not have sufficient evidence.

If the profession would be willing to label it as 'investigational' then the external world would not look at occupational therapy practice with such skeptical eyes. Maybe they would say, 'look at those OTs. They are hard at work doing research to help understand the best ways to work with children who have these problems.' Instead they will say, 'there go the OTs again, pushing out another study and over-reaching with their conclusions about the relevance of what it says.'

My bottom line question is this: If we are expected by AOTA to use evidence to guide our practice, and if the entire world tells us that we have not yet generated adequate evidence about an intervention - are clinicians left to draw the conclusion that the professional association expects us to suspend our desire for evidence when it comes to sensory integration as an intervention?

Are we really supposed to blindly adhere to the intervention and put on tinfoil hats and blame the rest of the world for conspiring against us?

Thursday, April 19, 2012

How CPSE to CSE transitions are being handled in some districts.

I just saw a flyer from a local advocacy and educational center about a seminar they are offering for parents about the transition process between CPSE and CSE. This is a very good group and they provide valuable services to parents, but I was wondering if they would describe the transition process in terms of how it SHOULD be or how it ACTUALLY IS.

Here is a review of how it ACTUALLY IS for many parents who are unlucky enough to live in certain school districts.

In February a school asks all the related services people providing OT, PT, Speech, etc. to give their opinions on whether or not a preschool child should be considered for CSE referral. The school compiles these generic opinions and based on some unknown decision making process sends some of the names over to the CSE for consideration. Then a giant wall is erected and there is never any additional communication between the CPSE and CSE.

Sometime in March or April I get requests from CSEs to participate in these meetings, and I make statements like, "Who decided to send them to CSE? Does the parent know they have been referred? We didn't even have the CPSE annual review meeting yet so there is no decision on declassification or whether services should continue. How can there be a recommendation for CSE referral and attempts to schedule a meeting prior to the CPSE annual review?" No one can answer these questions.

Then sometime in April or May the CPSE has their annual review. Some children are found to be ineligible for more services because they have met their goals. No children are declassified, as that would require a declassification plan. Instead, they are simply found to be ineligible or time is just allowed to 'run out' and the children 'age out' of the CPSE system.

Those few who are on that special list that was compiled back before any meetings happened are then 'evaluated' by a CSE subcommittee. The process for 'evaluating' the children is to have someone totally independent who does not know the child at all do a generic ten minute observation. The CPSE providers are never consulted, but they are invited to the meeting. Generally, the meetings look like this: the CPSE provider sits in a room with a CSE chair and the hapless parent and hears the subcommittee decision that the child is not eligible for CSE referral. Exceptions are made when children are in wheelchairs, are non-verbal, or are near death.

Everyone else is determined to be ineligible, and is then subject to the RTI Model which is successful in holding off special education services until the children are in 2nd or 3rd grade, at which time it is very difficult to remediate delays - but gives enough time for the school to re-classify children and cherry pick which ones are eligible for testing accommodations or exclusions so that they can make the district's state testing numbers look acceptable. Then they get related services and accommodations via CSE for a year or two before they are declassified because the CSE doesn't provide related services to children after elementary school (unless they are in wheelchairs, non-verbal, or near death, etc.). Some children are given 504 plans through middle and high school years so that the school can continue to have testing exclusions, if it suits the school's need and helps with their reporting requirements.

This is not cynical. This is the way it rolls. I wonder if they will say this at that meeting.

Question: Should what school district you live in be a determining factor in how your CPSE to CSE transition is handled?

Friday, April 13, 2012

Thoughts on the validity of subtypes of sensory processing disorder

There is a study that was announced this week by the Sensory Processing Disorder Foundation about classification of sensory processing differences in children (James, et. al, 2011). The study describes a process of using cluster analysis to differentiate subtypes of sensory processing disorder. Results of this study indicate support for the empirical nosology proposed by Miller, et.al. (2007).

Schaaf and Davies (2010) explicitly talked about the need to careful consideration while we are refining and redefining sensory integration or sensory processing concepts. In their article they commended Lucy Miller's group for advancing the theory but at the same time called for empirical evidence to support these concepts. The James, et. al. article seems to be a response to that call.

Of significant concern in this new cluster analysis is that "a high percentage of our sample displayed behaviors characteristic of ADHD and similarly a high percentage of children who met criteria for ADHD were reported to have SMD." ADHD researchers has been grappling with the validity of subtypes for quite a while, so it is a little concerning to see any conclusions being made from this sample of children who have SMD who have such a high co-morbidity of ADHD symptoms.

This is a concern because Rowland, et. al. (2007) and Valo & Tannock (2010) found that data collection methods and who was acting as informant had a significant impact on ADHD classification. This kind of information does not inspire confidence in classification, particularly when the James study on SPD relied heavily on parent report instruments.

Additionally, there has been debate about stability of ADHD classification across time (Lahey, et.al., 2005). If the group studied by James also had ADHD, and if we know that there is possible concern about stability of their ADHD symptoms that can confound sensory processing issues (if they even can be teased apart) then this causes some potential problems for the validity of sub-typing.

My interpretation of all this is that it is odd for us to be looking at the validity of sub-typing, particularly when our samples are full of children who have known sub-typing instability.


References:

James, K. Miller, L.J., Schaaf, R, Nielsen, D. M. & Schoen, S. A. (2011). Phenotypes within sensory modulation dysfunction. Comprehensive Psychiatry, 52, 715-724.

Lahey, B. B., Pelham, W. E., Loney, J., Lee, S. S., & Willcutt, E. (2005). Instability of the DSM-IV subtypes of ADHD from preschool through elementary school. Archives of General Psychiatry, 62, 896-902.

Miller, L. J., Anzalone, M. E., Lane, S. J., Cermak, S. A. & Osten, E.T. (2007). Concept evolution in sensory integration: A proposed nosology for diagnosis. American Journal of Occupational Therapy. 61, 135-140.

Rowland, A.S., Skipper, B., Rabiner, D.L., Umbach, D.M., Stallone, L, Campbell, R.A., Hough, R.L, Naftel, A.J., Sandler, D.P. (2008). The Shifting Subtypes of ADHD: Classification depends on how symptom reports are combined. Journal of Abnormal Child Psychology,(5), 731-43.

Schaaf, R. C., & Davies, P. L. (2010). Evolution of the sensory integration frame of reference. The American Journal of Occupational Therapy, 64(3), 363-367.

Valo, S. and Tannock, R. (2010). Diagnostic instability of DSM–IV ADHD subtypes: Effects of informant source, instrumentation, and methods for combining symptom reports. Journal of Clinical Child & Adolescent Psychology, 39(6), 749-760.

Tuesday, April 10, 2012

When life is too full: Social and cultural impact on parenting practices

During a lecture that I was giving to students yesterday I found myself rattling through a list of gross motor and fine motor play experiences that OTs might suggest to parents and how these activities would promote normal sensory motor development.

I started thinking to myself that it was odd that we are socially and culturally in a place where we have to 'teach' some parents about how to promote children's play. The truth is that some parents really do need help to understand how to promote normal development - and in part that is probably because we have new social and cultural practices that separate families from each other and relegate care of children to non-family members.

Some families are able to deftly balance all of the conflicting social role expectations and requirements of jobs, parenting, maintaining family balance, etc. Others struggle mightily. I just did a quick blog search to see if I have ever told the story of the "mom-ager" and I couldn't find it anywhere. I have had a story brewing for nearly ten years about a wonderful and well-intentioned mom who was the family's primary wage-earner and had a high-powered job, but she was so overwhelmed with her work role that she tasked out child care responsibilities at a level that would have impressed the most organized of schedulers. She knew the schedule, down to the minute, of what her 12 month old child was doing and who he was with. She quilted together a tightly organized but ultimately dysfunctional network of care providers and ran the whole operation with an iron fist. The impact on the child was unfortunate: he had developmental delays due in part to his lack of a normal environment and lack of any primary caregiver. There were days where the child would have up to three or four caregivers, and the parents got home so late from work that the child just slept over different people's houses. I always thought that the child did not receive parenting but rather was subject to what I called "mom-agement." I probably never wrote this down because I don't know how to constructively tell the story. It was just sad.

Anyway, a recent study indicates that nearly half of preschoolers do not experience an outdoor play experience that is supervised by parents. This relates rather directly to my statements to the students yesterday and how occupational therapists often have to 'teach' parents about these kinds of activities.

A blogger for the LA Times wrote an article questioning the validity of the study, but in her asking if the study missed the point I think that ironically she may have missed the point. I understand how parents struggle with making the ends of financial and parenting responsibilities meet - and I understand how that might drive parents toward a defensive reaction to the information found in the study. It is true that the study didn't report on how much time children were getting outside play experiences in preschools or at care providers. Maybe they are getting physical play experiences in these environments. But maybe they are not.

Either way, the larger concern is that parents themselves used to be the direct supervisor, organizer, nurturer, etc. of their children for these outdoor play tasks and sometimes that just isn't the case any longer. Some parents, having 'given up' or 'tasked out' those roles no longer 'know' how to do these things with their children. Even if they do 'know' they don't have the ingrained behavioral habits and routines to engage their children these ways. That might be the largest issue - if we accept the premise that habits and routines are socially reinforced via patterns of repeating parenting interactions then it is no wonder that professionals are now having to 'teach' some parents how to do these things.

Occupational therapists also should try to re-frame this issue for stressed parents. Here are the words of the blogger:

I’m guessing I’m not the only working parent who would feel chastised by the study authors for putting my kid in a situation in which he’s unlikely (statistically at least) to get his recommended hour of daily exercise. But the kids who play outside with their parents every day may not be getting a full hour of moderate-to-vigorous exercise either. The study makes no attempt to measure the total minutes of outdoor playtime with parents, only the frequency of these outings. Is 30 minutes of playtime in the sandbox with Dad really worth more (from an exercise standpoint) than 45 minutes of tag with friends at school? I doubt it.

The 'hour of daily exercise' is really not the point because as we see in the example of the "mom-ager" I am sure that the daily requirement could be achieved one way or another. The point is that parenting practices have changed as a result of the stresses associated with our social and cultural practices. What we need to examine is how current demands are changing our children's experiences and impacting their development. Then parents can make choices based on their unique experiences and mitigate any 'problems' that might exist.

These are tough issues. Occupational therapists are in a good position to help parents frame the concerns so that it is not processed as 'guilt' but instead leads to an understanding of how to improve their children's experiences.


References:

JAMA and Archives Journals (2012, April 2). Nearly half of preschoolers lack one parent-supervised playtime per day. ScienceDaily. Retrieved April 10, 2012, from http://www.sciencedaily.com­ /releases/2012/04/120402162557.htm

Kaplan, K. (2012, April 10). Booster Shots: Oddities, musings and news from the health world. Study on kids' playtime with parents: Does it miss the point? Retrieved April 10, 2012, from http://www.latimes.com/health/boostershots/la-heb-preschool-child-exercise-outdoors-20120403,0,1930263.story?emc=lm&m=678248&l=4&v=2714438

Saturday, April 07, 2012

Sensory integration and insurance coverage

My tongue-in-cheek commentary on fidelity in sensory integration and coverage for geriatric SI has generated a lot of email questions: a lot of people wanted to know the policies of most insurance companies. Obviously the insurance company I was poking fun at was covering something that they are calling sensory integration but I am not convinced that their definition matches that of many other people.

Here is a summary of the sensory integration policies of the largest health insurance companies in the US:

United Healthcare policy

Sensory integration therapy is unproven for the treatment of any condition... The available studies of sensory integration therapy are weak and inconclusive and derived primarily from poorly controlled trials with methodological flaws. These trials fail to demonstrate that sensory integration therapy provides long-term improvement in neurological development and behavioral development. There is no reliable data from well designed clinical studies that indicate that sensory integration therapy improves clinical outcomes in patient with cerebrovascular accidents, speech disturbances, gait abnormalities, or other medical conditions. Further and better designed clinical trials of sensory integration therapy are necessary in order to establish their clinical usefulness.

Cigna policy

Sensory integration therapy is specifically excluded under many health benefit plans. In addition, many benefit plans specifically exclude behavioral training and services, training, educational therapy or other nonmedical ancillary services for learning disabilities, developmental delays, autism or mental retardation. Cigna does not cover sensory integration therapy (SIT), auditory integration therapy (AIT) or facilitated communication (FC) therapy for any indication because they are considered experimental, investigational or unproven.

Aetna policy

Aetna considers sensory and auditory integration therapies experimental and investigational for the management of persons with various communication, behavioral, emotional, and learning disorders and for all other indications. The effectiveness of these therapies is unproven.

Blue Cross Blue Shield policy


(there are many BCBS plans - this is representational)
Sensory Integration Therapy is considered investigational. BCBSNC does not provide coverage for investigational services or procedures... A recent literature search found no new clinical trials that would change the policy statement. Currently there is insufficient evidence that sensory integration therapy is effective. A lack of well-designed clinical trials prevents conclusions that this treatment improves health outcomes.

++++++++++++++++++++++++++++++++++++++++

For reference purposes, here is a link to a letter written by AOTA in response to BCBS of North Dakota's policy. I have some mixed feelings about the letter. On one hand I appreciate the advocacy but on the other hand I feel like it is not acknowledging the limitations of the current research. Specifically in this example, AOTA referenced two studies that purport to demonstrate effectiveness of SI. In fact some of the above linked insurance companies had already l0oked at those articles and suggested that they still lacked appropriate statistical power and had sample sizes that were too small.

A logical question is: Why would AOTA advocate so strongly for something that is still (apparently) not fully supported by research? If over time, independent people (not just insurance companies, but projects like the National Standard's Report or the NYS Early Intervention Clinical Practice Guidelines) have stated that an approach is investigational then what causes a professional association to advocate so strongly?

Arguably, insurance companies or even governmental agencies that have to pay for services may have an inherent interest in limiting coverage or limiting approval to very restricted intervention techniques. Still, they have to stand against public scrutiny of their positions. It is logical to assume that if public scrutiny works then there must be SOME VALIDITY to the fact that sensory integration should be considered investigational.

If there is even partial validity to all of these policies, then why does a professional association continue to advocate a different position instead of ACCEPTING the designation of sensory integration as 'investigational.' This is all fodder for conjecture. Is it possible that AOTA is experiencing sunk-cost bias?

If we define 'AOTA' not as a bricks and mortar building in Bethesda but rather as the collective consciousness of a whole lot of dues-paying members - is it possible that we have invested too much into this concept OR that we are invested so that we are unable to place ourselves on a different path to define, refine, and advance the intervention strategy in the best possible way?

This is an important question because as we struggle as a profession with the issue of fidelity in research are we sure that we are efficiently and effectively allocating our efforts? As sure as this question will generate hate mail, I will be equally sure that the hate mail itself will be evidence of the need for occupational therapists to examine this more closely.

Tuesday, April 03, 2012

On the Great Frontier and Trendelenburg gait patterns.

The morning was ticking slowly by, which suited my needs and my mood. I am generally at peace with the passage of time. Answers don't always happen quickly - but I like to be ready when they do happen.

I have learned to be patient when I am confronted with clinical problems. Sometimes it takes a while to get to a distant destination, and progress is more easily measured by movement toward goals than by the passing of some arbitrary measurement of abstract time. But then like a flash there will be a change, and sometimes you just have to frame a problem a certain way in order to find a good solution.

That is what I have been thinking about all morning ever since Sandy left.

Sandy is five years old has left hemiplegia which causes her to walk with her left arm flexed above her shoulder so that her hand is almost touching her ear. Her left leg is stiff and she has a Trendelenburg gait. She is receiving physical therapy but her gait pattern is becoming habitual. She still has hip weakness but the pattern of holding her left arm so high and keeping her left leg stiff is as much behavioral and habitual as it is physical.

During therapy we work on activities that strengthen her left limbs and we developed a positive behavioral program that reinforces a more symmetric gait pattern.

I was thinking this morning that opportunity stretches in front of Sandy like the promise of a vast frontier - but how could she cross that frontier with such an awkward gait pattern? The largeness and openness of opportunity is daunting. It has been so difficult to help her change her habits - and without a change in habits she has little opportunity to experience movement that will strengthen her weak muscles. Where does one begin?

When problems are present, mythic solutions can be created by mythic characterization. Who would be best to solve a problem of tackling the vast frontier? None other than Natty Bumppo! Natty Bumppo was resourceful, and heroic, and moral, and pragmatic - all at the same time. I fancied that he would know how to solve this problem of persistent and habitual gait dysfunction if it were within his purview.

As Sandy lurched and tripped her way around the clinic this morning my eyes focused on a toy that rarely gets used: the stick ponies. Like a flash of instinct I grabbed for the toy like it was my trusty flintlock. One shot, one kill. This was my solution.

I mounted my faithful steed with left arm extended to the stick and holding the bridle with a flexed right arm. I encouraged Sandy to do the same, modeling the correct arm position that was counter to her habit. Then we began galloping, left foot first, causing her to have to flex her left hip and left knee while propelling off of the stability of a stiffened right leg as we galloped. Again, totally counter to her habitual pattern.

It was an absolute success as we galloped onto the Great Plains ahead, new 'tools' at the ready to counteract her habitual gait pattern.

It is my belief that Natty Bumppo would have approved.