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

Posted Jan 14 2009 8:56pm
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.
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