Sunday, May 26, 2013

PWS Awareness Day #26: Independence

When Dean was born, we were told that no adult with PWS lived independently. This immediately changed our ideas about the future, about the days when all the kids would be "out of the house" and we would get to enjoy time on our own again. We thought those days were over.

As with most things, it turns out that the answer is more complicated than that. The way we usually define it, "independence" for an adult with PWS is not usually moving out by themselves to be the head of a household. It might mean moving in with other adults with PWS or other special needs, with a caseworker to check in frequently and maintain food security (i.e., lock and unlock food). It might mean living with parents, grandparents, siblings, or other family members where there is more immediate supervision and food security.

Then there is the option of a group home, either one that is exclusively for people with PWS, or one for any adult with special needs. The issue with the latter is that it is often NOT allowed for food to be locked up; while this protects life for the person(s) with PWS, it can be considered basically abuse to lock up food for the other residents. Funding for and access to PWS-only homes and living arrangements are desperately needed.

Adults with PWS pretty much as a rule do not drive (for various reasons) and access to bank accounts and money needs to be monitored so they do not buy food at will.

There is so much more to say, but the bottom line is this: adults with PWS are *adults* first and foremost. They want the same things that any adults want: to be loved and love others in a family, to have meaningful jobs or activities in which their contributions matter, to have friendship and companionship, and to have a sense of independence. What this looks like is obviously affected by the issues mentioned above and others, and this is an area where the PWS community has a lot of room to grow, especially as adults with PWS are living longer.

The picture is from the Latham Centers (a home for people with PWS)'s blog, It's an excellent blog and I would encourage you to check it out!

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