Wednesday, July 30, 2008

A Response to "Who Should We Be Treating in EI?"

Dr. Jane Sorensen wrote an opinion piece in the most recent Advance for Occupational Therapy Practitioners where she muses about which populations of children are best served by occupational therapy services.

This opinion piece is one of the most disturbing that I have read in a while. Dr. Sorensen suggests that functional outcomes for severely disabled children are no different when they receive services from skilled professionals as opposed to when they receive maintenance care from people who are less-skilled. She states that occupational therapists should "focus away from the very disabled child and give treatment to those who have a chance in leading full or nearly full functional lives as adults... Let the less-skilled personnel focus on the least functional patients with the poorest prognoses. I think we would be more creative, could get more attention and respect as a profession if we would treat babies who will eventually enter into and take part in the mainstream of our society."

Dr. Sorensen offers no evidence to support her claim that outcomes are the same when unskilled or less skilled professionals provide services. Many studies indicate that early intervention services have a positive impact on child development. Additionally, these services train families to care for their own children in the community as opposed to warehousing the children in orphanages and developmental centers. Dr. Sorensen has years of occupational therapy experience and it is surprising to read that she is unable to appreciate the differences between children who had chronic developmental delays and were warehoused in institutions as compared to children today who have the same diagnoses but who are maintained in their homes and with their families.

Our society already tried subrogating the care of children who have developmental disabilities to people who are 'less skilled' and less able to provide functional care. The result of that decision culminated in 'The Snake Pit' at the Willowbrook State School, which ironically is not so far from where Dr. Sorensen practiced occupational therapy. To read more about New York State's disgraceful past of subrogating care of children who have developmental disabilities to 'less skilled' personnel follow this link.

Dr. Sorensen also elevates the interests of the occupational therapy profession above the needs of the individual children who she wants to deny care to. The purpose of providing care to children who have developmental difficulties is not to satisfy the creative urges of therapists. It is also not the purpose to help occupational therapy professionals get more attention and respect.

In case Dr. Sorensen needs to be reminded, the purpose of providing occupational therapy to children and families, irrespective of their disability status or functional prognosis, is to assist that child in experiencing as normal a childhood as possible, full of opportunities for growth, development, productive and satisfying engagement in their lives, and opportunities for finding meaning for their lives in the context of their occupations.

There is a slow and insidious movement in society that devalues human life, particularly when that life is not the same as most people who are 'healthy' or 'free from disease.' Our national debate around this topic came to the forefront in recent years with the conversation about the relative 'value' of Terri Schiavo's life. The issue of other people (or the state) making choices about the relative value of life has been an unresolved conflict stretching back to other 'right to live' or 'right to die' cases such as Nancy Cruzan, where Justice John Paul Stevens issued his dangerous opinion that:

"Nancy Cruzan is obviously "alive" in a physiological sense. But for patients like Nancy Cruzan, who have no consciousness and no chance of recovery, there is a serious question as to whether the mere persistence of their bodies is "life" as that word is commonly understood, or as it is used in both the Constitution and the Declaration of Independence. "

Stevens argued that the state had no compelling interest in preserving life - and went so far as to make value judgements about the worth of a life. In fact our founding documents make no such distinction about the relative value of life.

So who out there wants to let 'wise' people like Justice Stevens or Dr. Sorensen decide if their child's life has enough 'value??'

I am not that interested in the 'state' functioning as a nanny over my life or anyone else's life - but as long as we have dangerous people like Justice Stevens or Dr. Sorensen making unsubstantiated value judgements about human life we will need the courts to protect the interests of people who are unable to advocate for themselves.

Dr. Sorensen treads dangerously close to the proverbial 'slippery slope.' At what point do we euthanize or abort all children who have genetic disorders? At what point in time do we leave people who have disabilities by the wayside so that we can focus more on the people who are not so disabled?

It is incorrect to make this an argument about resource allocation. Everyone agrees that we need to judiciously use our resources for the greatest good. However, that does not mean that we trample over the rights of people who need resources the most. The correct conversation is about how humane we are as a society and how dutifully we protect the rights of citizens who may be vulnerable.

It is a shame that Dr. Sorensen misses this point.

Thursday, July 24, 2008

Unconventional occupational therapy assessments

I attended a meeting today in support of a child receiving occupational therapy to develop accommodations to the middle school curriculum. A school-based therapist completed an occupational therapy evaluation and it contained many assessments that are generally appropriate for children of that age. The school based therapist did not believe that the child qualified for occupational therapy.

The child is 12 years old and the evaluation included the Developmental Test of Visual Motor Integration, the Motor Free Visual Perception Test, and portions of the Bruininks-Oseretsky Test. By all of these measures the child was functioning within appropriate developmental parameters. The school OT reported that the child could write legibly, could change for physical education class, and manipulate all school materials functionally.

So why was I recommending accommodations to the middle school curriculum?? It is true that the child had excellent grades and good handwriting - but these were not the real problems. The problem could be found in the child's inability to participate.

My OT evaluation included a review of the child's attendance record. New York State mandates a minimum of 180 days of instruction, and this particular child missed either part or full day of instruction on 52 days, for a total absentee impact of approximately 30%. The child has severe migraine headaches and an underlying seizure disorder. The neurologist believes that triggers for the migraines include eye strain, high contrast visual input, and light.

So as long as the child is not having migraines, participation and performance is excellent. As soon as the child has a migraine, participation and performance plummets. So the problem with the OT evaluation completed by the school therapist is that it was done under non-migraine conditions and was swinging at the wrong issues at the wrong time.

Now I don't advocate testing when a child is having a migraine headache, but in this case the most appropriate assessment tool is the attendance record that clearly shows how this disability impacts the child's abilty to participate in the curriculum. The migraine and seizure disorder are new conditions and certainly the child will be at risk for more severe and long term deficits if this high level of school absence continues. The parents have been working near full time to keep the child 'caught up' with school work, but of course all the increased stress at home contributes to migraine incidence. This kind of intervention plan is not functional for the long term.

The child requires accommodations including preferential seating while copying, increased time for testing, use of sunglasses in school, use of colored paper for handouts, and anti-glare screens on computers. Other specific issues will likely come up so the OT needs to be involved on a consultative level on an ongoing basis. Some of these strategies may hopefully decrease triggering events that can lead to migraines, and subsequent loss of participation.

So just because the test scores are all normal does not always mean that participation and function are normal. And sometimes the evidence can be found in places where we are not typically accustomed to looking.

In the case the occupational therapist needs to help the educational team understand the impact of the disability on participation. Too often, schools look at situations like this and don't want to provide assistance because the child is 'doing fine.' Again, the concept of 'doing fine' can't be always narrowly interpreted as how a child performs on a typical standardized test at a specific point in time.

Wednesday, July 02, 2008

When good people do nothing...

Edmund Burke's call to arms is apparently lost on some Illinois occupational therapists, at least according to the cover story "The State of EI Practice" in the current Advance for Occupational Therapy Practitioners .

According to the article, some OT practitioners in Illinois are more concerned about not offending their referral sources than in securing the safety of the children in their state who need occupational therapy services. That's a pretty hefty charge.

I wonder if it is true.

Well now is the time to step up. If there is unsafe practice going on in Illinois and if there is encroachment on the occupational therapy practice act by untrained and unqualified 'developmental therapy practitioners' then I expect to hear a hue and cry from concerned practitioners in Illinois.

And if there is silence that will also 'tell' us a lot - that either there is no problem, or that OTs in that state are willing to abdicate their responsibilities because (according to the article) there are professionals who don't want to work in 'low socioeconomic areas.'

Big charges - how do the OTs in Illinois respond?? I will post any rebuttals to the charges in full and unedited on this site - if anyone wants to submit something. Submit to