Stephen Grammer
Roanoke, Va.
To the Editor:
David Axelrod aptly describes how when it comes to people with disabilities, others often determine what is best for them. Fifty years ago, we demonized institutions, in most cases for good reason. I agree that people with disabilities should live in their communities, but are group homes the only setting for them? While some group homes are well managed, many providers of residential services are shamelessly making money while providing institution-like services.
I am the parent of a 50-year-old man with autism who has lived in group homes for the past 25 years, and not by his choice. For that reason, I joined a group of Delaware parents that is collaborating with our Department of Health and Social Services and Medicaid to develop innovative and person-centered living options for our adult children who have their own dreams and expectations.
Families need to speak up, and the powers that be need to respect and fund individual choice, not dogma.
Marie-Anne Aghazadian
Wilmington, Del.
The writer is the former executive director of Parent Information Center of Delaware, which provides support to parents of children with disabilities.
To the Editor:
David Axelrod and his daughter are immensely fortunate to have found a very special residential facility where she can thrive, surrounded by friends and engaged in meaningful activities, all while retaining full access to her community. Tragically, however, unlike the Axelrods, hundreds of thousands of autism families are facing a devastatingly bleak landscape with no viable options for adult housing.
While we support the Better Care Better Jobs Act for expanding federal funding for home- and community-based services for people with disabilities, we agree that the bill betrays a large segment of more severely disabled adults who require special facilities equipped to serve their complex needs. No amount of idealism can substitute for the cold hard fact that most require much greater support — and options exactly like those described by Mr. Axelrod.
Jill Escher
San Jose, Calif.
The writer is president of the National Council on Severe Autism.
To the Editor:
I, too, am the parent of an adult daughter with disabilities. David Axelrod’s description of his daughter’s situation after high school is intimately familiar to me. There is no greater sadness for a parent than to see their beloved child sitting home alone day after day. There is also no greater responsibility than to know that, if not for you, your child would never have a social life and that someday you will not be there.
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