The professional abandonment of people who have developmental disabilities

Last year I bumped face first into a gnawing problem.  I was discussing practice trends in a professional context with an impressive panel of colleagues who were subject matter experts.  I raised the topic of the role of OT in planning transition services for adults who have developmental disabilities, and the more general topic of services to adults who have developmental disabilities was bantered about.

My own personal perspective is that OT has a critical role in providing services to this population, and in fact concerns about adults who have developmental disabilities have been discussed in this blog more    than    a    few    times .

 The problem I ran into is that among the opinions of the subject matter experts who represented diverse geographies around the country, not all could confirm that occupational therapists were an important part of the care plan for this population.  In some contexts, subject matter experts indicated that it would be a potential role for OT, and that it certainly fit from a theoretical standpoint, but that in practice there could not be consensus that OTs were routinely associated with these care contexts.

I argued for a while out of shock and then blasted myself back into form because the point of the conversation was to reach consensus and clearly there was none to be found.  I trusted the group, and I trusted the process, and I left that conversation with a hole blown into my conceptualization of the role of OT with people who have developmental disabilities.

How did we get to this point?

Denial is a useful method to avoid cognitive dissonance and that is what I have done with that conversation for over a year.  Recently I experienced a couple of events that brought the topic back to the front burner of my consideration.

I attended a CSE meeting recently where a child who has severe autism was being recommended for a decrease in occupational therapy services.  The child is still learning and developing and in my estimation requires skilled professionals to be deeply involved in his educational plan in order to promote continued learning.  I have been fighting a decrease in this child's service levels for three years straight (in accordance with the parent's agreement, of course).

Each year the special education program trots out a new OT who makes a determination that services should be decreased.  Each year I address the data.  One year I demonstrated how the program-administered SFA indicated severe school performance deficits.  This year I pointed to data that the child had not met any of the educational objectives on the IEP.  I don't consider any of these OTs as SMEs, and I can't be certain that they aren't under pressure because the program's history is to decrease related services dramatically after ANY child in the program turns 8.  For every child I have ever had in that program, the consistent argument is that related services are not needed because the children receive what they 'need' via the structure of the program itself.

So this year the program stated, "We have had three different OTs across three school years all recommend a decrease in services."  Even though I don't consider those opinions expert or free from prejudice, as a rational person I have to ask myself the question:  What are other people seeing or believing that I am not seeing or believing?

It is certainly not a matter of functional performance, because there is absolutely no question that this child and other children just like him have severe performance deficits.  What is at question is the fundamental moral value of whether or not these children should receive benefits like related services such as therapies - or if the pre-packaged (dare I say 'institutional') special education programs provide something that is 'good enough' based on program structure alone. 

As referenced in the articles above,there are some concerns about how our systems are constructed and whether or not we are keeping our moral promises about care for this population.

On a regular basis I talk to parents who desperately want professional care for their children (including adult children) and I sit in meetings trying to fight back an obvious tide of opinion that says that paraprofessional services are 'good enough.'  It is just as if Willowbrook never happened and that the definition of 'appropriate' in FAPE is something that can be equivocated.  People ASK me to help them get services - defending the radical concept of therapy for people who have disabilities is mentally exhausting - because it is unbelievable to listen to myself having to re-litigate civil rights issues that I thought were already settled.

After the exhausting meeting that ended poorly and will lead to mediation or legal action, I started some database searches to understand why I was fighting so hard for something that I didn't think needed to be fought about.

In my searches and meanderings I ran across a really good study done by a student at the University of Puget Sound.   The descriptive study was a survey of community programs for adults who have developmental disabilities to find out what their utilization of OT was.  It was interesting that the staff surveyed identified concerns that could be addressed by OTs but that those services were not consistently provided to the population.  The paper identifies key issues that may contribute to this dynamic including reimbursements and inability to develop community based programs following deinstitutionalization.

A rational person can't ignore data points from SMEs and data points from surveys that indicate low utilization of occupational therapy.  Similarly, I don't know how a rational person can ignore the civil rights legislation and all that it took to achieve services for these populations.

Since people come and ask me for help I can throw the individual starfish back into the ocean and say to myself that my efforts when advocating at CSE meetings made a difference for 'that one' but I can't ignore the larger issue.  I know that children and adults who have developmental disabilities come to my office and we are able to help them all through their insurance (most often Medicaid).  I also understand why the programs that they attend (schools, day treatment programs, sheltered workshops) can no longer afford related services because there just isn't enough money in the allocated daily rate schedules to support the professional staffing.  The problem is that there are virtually no OTs working in private contexts that can help people via their private insurance or Medicaid.  And since the programs are all cutting services or not even offering the services any longer, there are just no options for getting services within the existing program structures.

The only answers are to either increase funding that would support professional staffing, or to promote and encourage more private practice.  Since there is little appetite for local municipalities to take on more Medicaid burden for 'unfunded mandates' I see private practice as the only viable solution to the service delivery and funding problem.

What are the chances that there will be a sudden influx of OTs into private practice contexts to develop new models for community based care?  Slim to none, by my estimation - and that is something that should demand an awful lot of our attention.

The end game is that this is another example of a population that is  being professionally abandoned.  Of course people have the right to self-determine, and I would not promote a patriarchal system that forces people into therapy contexts.  Unfortunately, when the professionals leave the service system, those who still want access to those related service supports are left with nothing.  That is a moral problem that we need to spend more time on.


Unknown said…
I'm really appreciating this post today! I work in a public school setting currently and have just been told that my caseload will double next year. It's not how I want to practice - am starting to wonder if private practice is the way to go???

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