Whose life is it anyway? Thoughts on guardianship, autism, and growing old

As part of planning for the future, parents of autistic kids must consider many things. Key among them is this question of guardianship.

When a child in the United States turns 18 they are considered an adult, their own person. They can vote, they can enter into legally binding contracts, they can join the military (and if they are male they must register with selective service), etc. In order to rescind this legal right, parents must petition the courts and establish alternative guardianship. Obviously not a decision to be made lightly.

On the other end of the age spectrum, adult children often must make care decisions for their aging parents. Many times this results in these elderly parents living out their final days in a nursing home, with every aspect of their lives controlled by the administrators of the home. Again, not a decision to be made lightly. (I think we’ve all heard the horror stories.)

The film Almost Home, recently aired on PBS, talks about a different kind of way to run a nursing home.

ALMOST HOME offers an inside look at the lives of these residents, their families and those who care for them as each adjusts to the challenges of growing older. ALMOST HOME filmmakers Brad Lichtenstein and Lisa Gildehaus introduce couples bonded and divided by disability, children torn between caring for their dependent parents and their own families, nursing assistants doing difficult work for near-poverty wages and visionary nursing home director John George, who is committed to transforming his century-old hospital-like institution into a true home.

Under George’s leadership, Saint John’s On The Lake is reinventing its 135-year-old medical model of care (think hospital) with a social one (think home). His goal is to transform the way people see nursing homes—not as institutions of boredom and despair but as vibrant communities where residents live rich and fulfilling lives. To succeed, he will have to win over skeptical managers, resistant nurses, overworked and underpaid nursing assistants, complacent residents and often-overwhelmed family members.

The key change in my mind is that the residents here retain as much control as possible of their own lives. They can wake up when they want to, instead of the usual scheduled wake-ups. Meals are tailored as much as possible to what the residents desire, not a typical bland hospital menu. (If someone has lived a good 90 years, and wants some bacon for breakfast, they should be able to get bacon for breakfast!) They have a cocktail hour every Monday where *gasp* they can drink cocktails.

Whose life is it to live? It is the individual’s, of course. But, as the parent of an autistic teenager, that is somewhat easier to say than to act on. Any thoughts from autistic adults (several of whom I’ve recently gained as readers) or parents of autistic adults that have already gone through this are greatly appreciated.

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