Thursday, September 12, 2013

High expectations for people with DD and the danger in imposing unachievable goals

2-year old Ian
This is what happens when I clean off my computer table. I find things I forgot I had written. As often as not, I am glad to get them off the table and into the trash, but this one is about gentle Ian, my younger son who is now 28 years old and has profound physical and intellectual disabilities. I wrote it before a routine Person-centered planning meeting, not because we had big issues to discuss or dramatic changes that needed to be made, but because I was bothered by the expectation that sweet Ian would achieve "outcomes" that were never written for him. They were written to please the system that demands that the people it helps prove their worth by meeting meaningless goals and pie-in-the-sky expectations:

To the Person-centered planning team -

I have some concern about the wording of “outcomes” on Ian’s [2011] PCP. I am sure it is clear to everyone who knows or works with Ian that he needs total care and this is reflected in the description of most of the services he receives. Because of his limitations in communication, there is often no way of knowing for sure why he sometimes “cheeks” his medication or refuses to eat (a rare occurrence) or does not feel like “participating” in some activities [these were mentioned as problems in his PCP].

The statement that “Ian will to the best of his ability, comply with all recommendations and guidelines from the IPOS [Individualized Plan of Service]", for instance, seems to assume abilities that he may not have or that he cannot communicate to others.

Where the PCP says that “Ian will attend appointments as scheduled but will need the help of support team to do this”, it does not convey the severity of his disability. He does not just need “support”, but total involvement by staff to provide him with critical services that he cannot survive without.

Such expressions as “Ian will work with staff at meal times …” does not convey his reliance on the skill and sensitivity of staff to feed him what he needs in a way that gives him the enjoyment that we all expect from mealtimes.

I suspect that this approach to writing the PCP and IPOS comes from a philosophy that emphasizes abilities over disabilities, independence over reliance on others, and an optimistic view that everyone can live, work, and play in the community, just like everyone else. There is nothing wrong with this when it works for particular individuals, but for Ian, it is crucial to recognize the degree of disability that he lives with and not gloss over his dependence on others for his survival.

Ian has a sweet and charming manner in relating to other people, a gift that does not go unrecognized by his family, friends, and the people who work with him. But when the expected “outcomes” written in his PCP far exceed his abilities, it not only sets him up for failure, but the people who provide the services appropriate to his needs, also appear to fail, because Ian cannot meet impossible goals.

When everyone is looking for ways to save money on people like Ian, setting him up for failure could have dire consequences.

Please attach this statement to Ian’s PCP.

Fortunately, the people at the meeting were not heavily invested in the methods of the system and the wording was changed. Ian lives in a group home with his brother Danny in Ypsilanti, Michigan.

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