Facing the Big Question: How will our son fare when we are no longer around? How to find help — and some measure of control

As parents of a young adult with significant disabilities, one question is never far from our minds: What will our son’s life be like when we are gone or simply unable to participate in his care?

A little about our son:

Mark is 22 and has cerebral palsy. He has many abilities as well as disabilities and medical conditions that require one-on-one support. My husband and I — both of us in our 60s — are the primary caregivers. Habilitation aides and nurses also provide support several hours a week.

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