Where People With Disabilities Do Best
Des Enano
To the Editor:
Re “For People With Disabilities, One Size Does Not Fit All,” by David Axelrod (Opinion guest essay, July 5):
Mr. Axelrod asserts that the Better Care Better Jobs Act threatens the “dignity of choice” and happiness for people with disabilities.
I am the mother of an adult daughter, Erika, with developmental disabilities, and I served on the President’s Committee for People With Intellectual Disabilities during the Obama administration.
The Better Care Better Jobs Act would not take any money away from Misericordia, where his daughter lives, or institutions like it. The federal government has guaranteed money for institutional care for decades. Instead, what the act does is expand choices. It would, for example, give the more than 800,000 people on waiting lists for home- and community-based services a better chance of getting them.
By speaking out against this act, Mr. Axelrod is taking choice away from my daughter, and the hundreds of thousands of people who want to live in the community.
Lisa Pugh
Stoughton, Wis.
To the Editor:
David Axelrod is not alone in his fear for his beloved daughter, nor in his gratitude to the disability community, nor his dread of dogmas that threaten to derail her life. Our daughter, 51 and multiply disabled, lived at home for 32 years but needed more than we, therapists and day programs could offer.
As we saw her enjoy the community, friendship, vitality and even a degree of independence at her home at the Center for Discovery (a place similar to Misericordia), we understood how lonely our home-based care had been for her. The pity is not that larger specialized residential settings exist; it is that too few have the qualities required to make them excellent homes for our children.
Well-staffed apartments or small neighborhood group homes are doubtless preferable for most disabled people. For those with intense and complex needs, however, the best and likely only way for them to have the good life they, no less than we, deserve is to live with peers in excellent and caring intentional communities. Policy that ignores them is simply discriminatory and not worthy of the ideal of inclusion for which disability advocates have so valiantly fought.
Eva Feder Kittay
White Lake, N.Y.
The writer is the author of “Learning From My Daughter: The Value and Care of Disabled Minds.”
To the Editor:
David Axelrod is surely a loving parent, and his gift for telling a compelling story is well honed by his many years of experience as a political strategist. But his opinions about institutions as appropriate environments for people with intellectual disabilities are belied by decades of research on the outcomes of institutional versus community services and by the voices of persons with disabilities themselves.
The large body of research on this topic shows that people with disabilities are better off in every way when they receive services in typical homes and neighborhoods. They gain skills, they cease maladaptive behavior, they receive more services. They and their families are happier. The federal policies that favor community-integrated services over segregation have been informed by this body of research. The same evidence has persuaded federal judges in dozens of lawsuits to order community placement.
Equally important are the views of people with disabilities themselves, who have spoken vividly about the harms of institutionalization and their strong preference for living and working alongside their nondisabled peers. Research has shown that while a large majority of parents and guardians of institutionalized persons with intellectual disabilities want them to remain at the institution, those views change dramatically when their family members move to the community.
I wish Mr. Axelrod and Lauren all the best in the future, wherever Lauren makes her home.
Judith Gran
Philadelphia
The writer, an attorney, has represented residents of public and private institutions in lawsuits.
To the Editor:
I was born with cerebral palsy and I spent my 20s living in a nursing home after my mother became ill. I did not have the freedoms people without disabilities often enjoy. I could not go to the bathroom when I needed to. I could not eat when I wanted to. Sometimes I pressed the call button and it took an hour or more for someone to respond.
About 850,000 people with disabilities in the U.S. are waiting years or even over a decade for services and supports to live in their homes, in their communities. I waited nine years.
Funded by Medicaid, home- and community-based services provide supports for independent living, employment, meal preparation, money management, and health and safety. But those on waiting lists often go without the supports they need.
Today, I am living on my own in the community with supports from caregivers, and I am an advocate for people with disabilities because I do not want others to suffer. We need the Better Care Better Jobs Act. This funding would end the wait for people with disabilities, and hopefully one day give them a future that is secure.
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.
I was excited to hear about the living arrangement his family found for his daughter. Such a situation would be a godsend to my family. And I was angry to hear that there are those who believe they are “doing good” without asking the possible recipients of that purported good.
In New York State the usual wait time for community housing can be up to 10 years. I will continue to advocate for my daughter on my own and along with the agencies that currently support her. I will continue to contact my state and federal representatives. And I will continue to hope and pray that it’s enough.
Hilda Kapeles
Oakland Gardens, Queens
To the Editor:
Like David Axelrod, I, too, have a 40-year-old daughter with developmental disabilities. Being a retired special education professor, I know of what Mr. Axelrod speaks from both a professional and personal perspective.
Mr. Axelrod is correct in castigating the absurd dogma: “All larger communities are bad. All small, neighborhood-based group homes are good.” Unfortunately, the 1960s deinstitutionalization movement was not followed by enough federal and state dollars to ensure high-quality services in smaller group homes. Some are good, some are bad and some are in between.
Thankfully, after experiencing bad and in between residences, my daughter is now in a good group home. But what makes it good is not its size, but the expertise and dedication of the staff to provide for the individual needs of each resident. It is essential that families have options along a continuum of placements in order to meet the needs of individuals with disabilities. As is evidenced by these two 40-year-old adult children with developmental disabilities, one place definitely does not fit all.
Daniel P. Hallahan
Charlottesville, Va.
The writer is professor emeritus of education at the University of Virginia.
To the Editor:
David Axelrod’s essay about finding housing and an environment to meet the needs of his daughter who is disabled struck home like a bombshell. As two physicians with a 30-year-old daughter who has cerebral palsy, mostly confining her to an electric scooter, we thought we would be able to use our resources to find appropriate housing. We can’t.
She is verbally gifted but has problems with managing the business of life. She needs support and supervision, but not too much of either. A nursing home would be a cruel warehousing of an outgoing young woman who loves to sing and act and is finishing a degree in English and education at a local university. A small group home would not provide the exposure to the wide world she loves. There are myriad levels of disability that require funding for many different solutions. One size does not fit all.
Debra Grossman
Gregg Lipschik
Philadelphia