Dawn and Richard DiCarlo cherish the time they spend with their daughter, Amanda, at their Cheektowaga home.
They get a kick out of watching her play with the family’s two cats, Fancy and Angel. They appreciate when she helps around the house with laundry, dishes, gardening and other tasks. They smile when they see her play with her favorite Teddy bears.
But underneath the happiness, there is worry. The DiCarlos are retirees in their 60s. Amanda is 41, a developmentally disabled adult who needs constant care and supervision.
What worries Dawn and Richard DiCarlo is this: What happens to their daughter after they are gone, or are too old to care for her?
“It’s the kind of thing that keeps you awake at night,” Dawn DiCarlo said. “We love our daughter, but it’s like having a child who never really grows up. We still have to take her to the doctor, to the dentist, to all of her social appointments. She’s 41, but we’re still worrying every day about keeping her safe.”
The DiCarlos are one of an estimated 2,000 or more families in Western New York who have developmentally disabled adults waiting for placement in a group home. The DiCarlos are anxiously awaiting the outcome of a lawsuit filed Tuesday, seeking to force New York State to authorize the opening of more residential group homes for people like Amanda.
“It’s not that we want her out of our lives. Not at all,” said Dawn DiCarlo, a retired federal government worker. “What we want is to see her placed in a comfortable, appropriate group home that she is happy with while we are still alive. We still want to be part of her life. We want to have the peace of mind of knowing that has been taken care of. We don’t want her placed somewhere in an emergency situation after we die.”
Hopes for a lawsuit
The DiCarlos are not listed as plaintiffs and are not formally involved in the lawsuit. But according to the plantiffs’ attorney, the DiCarlos are among about 11,000 families statewide affected by the situation addressed in the lawsuit.
“Actually, the DiCarlos are more fortunate than many others because, at the moment, they’re all in reasonably good health and Amanda’s needs are not as severe as many other adults with developmental disabilities,” said attorney Bruce A. Goldstein of Buffalo. “All of these parents are concerned for their children and want to be involved in a thoughtful, caring transition to an appropriate residential situation while they’re able.”
In some cases, Goldstein said, aging parents are housing and taking care of adult sons or daughters who can be difficult to control, and sometimes violent.
The federal court lawsuit accuses Gov. Andrew M. Cuomo and Kerry Delaney, acting commissioner of the state Office for People With Developmental Disabilities, of failing to meet the residential needs of adults with developmental disabilities.
On Wednesday, the agency responded that it had not yet been served with the suit and therefore could not comment on it. However, the agency said in a statement: “The Office for People With Developmental Disabilities takes the needs of those in our system who require residential services and are living with aging caregivers very seriously. We have taken a number of steps to address this issue, including immediate steps to expand residential, day and respite options for those living at home.”
The agency is also “in the process of developing a five-year housing plan in concert with stakeholders to create new residential opportunities to meet the needs of those living at home with aging caregivers,” the statement read. In a report issued earlier this year, Delaney said she appointed a panel of experts last year to examine the state’s needs for housing adults with disabilities.
“New York State has been a leader in the care of people with developmental disabilities,” Delaney said in the report.
She said her office plans to devote “a significant amount” of money to developing a program to help make more residential facilities available, and also to assist families who prefer to keep developmentally disabled adults at home.
But according to Dawn DiCarlo, who is a member of an advocacy group called the Developmental Disabilities Alliance of Western New York, the state has moved too slowly to meet the needs of parents like herself.
Long waiting list
“Amanda has been on a state waiting list for placement in a group home since she was 25,” Dawn DiCarlo said. “You can’t really find out where she is on the list. I know other people who have been waiting for years and years. The state puts people into group homes after their parents died, or there is some kind of crisis and the parents can no longer take care of them.”
Amanda, a friendly and energetic woman who enjoys talking about the Buffalo Bills and her favorite movies – especially the old Chevy Chase “Vacation” comedies – said she wants to move into a group home.
“About half of my friends live in group homes,” she said. “You get to spend time with people your own age. … They go out for a lot of activities. I know I would like that.”
But as she sat in her parents’ living room, Amanda said, “From what I hear, some of the group homes are not so good. Sometimes, they’re short-staffed.”
Dawn DiCarlo said she and her husband, a retired shipping clerk, want to have a role in choosing the group home where their daughter will live.
“Any parent wants what is best for their son or daughter, and that’s what we want,” she said. “Since the day Amanda was born, we have built our whole lives around making sure she is happy and safe. In our case, there is some urgency because we have no other relatives who are able to care for Amanda after we’re gone.”
For now, Amanda is doing well. She works 25 hours a week at a downtown Buffalo workshop run by Allentown Industries. According to Amanda, she usually makes $25 to $30 a week for putting items in boxes. Sometimes she puts pieces of felt or key rings in boxes. “This week, we are putting insect wipes in boxes. Insect wipes for your skin,” she said.
Amanda works out at a local gym with her mother. She bowls, watches the Bills on TV, goes to dances, and sometimes takes out-of-town trips with other adults with disabilities, with a group called People & Places.
She also goes on vacations – including a recent cruise to the Bahamas – with her mother and father.
But she cannot drive, and has trouble reading and following directions on street signs.
“Amanda has the keeping busy part down really well,” her mother said. “She’s doing fine, for now. It’s the future that we worry about.”