Today the NY Times got a disability story right. In "For Disabled, Age 18 Brings Difficult Choices" Marc Santora wrote about the profound problems disabled people encounter when they age out of the system and become adults at 18. For 500,000 young adults with serious disabilities the options they have are limited at best. Many labeled "medically fragile" end up in nursing homes and a their life is profoundly compromised. For instance, two young disabled people featured in the story are currently living in a 700 bed institution for the elderly. The executive officer acknowledged that it was impossible to "create a milieu that is best for them".
The problems and options 18 year old disabled people have are severely limited--a fact highlighted in the article. This issue is not new to disability rights activists such as ADAPT and disability rights publications like Mouth. What is new is the number of young disabled people in this unenviable situation is growing. In spite of the actions of disability rights activists the fact is doctors, parents, and hospital administrators do not know what to do and up to 70% of young disabled adults can end up in a nursing home. The ignorance involved in deciding what to do highlights the divide between disability activists and the public at large leading the one doctor to state "It's something totally new, so part of it is just educating people about the situation". I could not agree more that further education is needed as is new legislation. Legislation and viable options beyond life in a nursing home are a must. But what sort of education and options will people be exposed to? The nursing home industry is powerful and well connected while disability rights groups despite a major commitment are virtually invisible. I wish I had a solution to the issues involved and my heart goes out to parents and disabled adults who are in an impossible situation that need not exist. What I can do is continue my support of disability rights groups like ADAPT and try to educate the public via this blog and my academic writing. This seems like a paltry contribution when I know other disabled people have a life that is compromised for truly bad reasons.
2 comments:
I wrote about the same article on my blog this morning as well! http://impossibleuniverse.blogspot.com/2008/05/medically-fragile-kids-aging-out-of.html
I agree that it was great for NY Times to bring the issue into the spotlight, but I had some issues with the way they wrote the piece.
Sarah, I agree there were holes in the NY times article. You did a great job at your bog discussing them. For the Times the article in question is about as good as it gets. This is a backhanded compliment as most articles in the Times on disability are dreadful.
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