Free the Disabled!
My son deserves a break
THOUSANDS of healthy, developmentally disabled New Yorkers are captive behind locked doors because of a bureaucratic regression, backed by Gov. Cuomo and hidden from public view by the COVID crisis. The situation is sadly reminiscent of the horrors of Willowbrook State Hospital.
New York state is zooming to the new normal: tattoo parlors inking, beauty parlors snipping, nail salons clipping, bars slinging hooch. Meanwhile, developmentally disabled New Yorkers are being held prisoner in group homes because a state-licensing agency has adopted a “one size fits all” program. My son Dan, 32, is one of them.
The agency — the Office for People with Developmental Disabilities — ordered all group-home residents to be confined to quarters in late March as the COVID crisis began to unfold. They remain so today because the disabled are not a priority of the Cuomo administration.
Dan was an active guy: He played ice hockey with a special team, tilled the soil at an organic farm and toted hay bales — usually two at a time — at a horse stable.
Now his sole outdoor activity is a daily walk around the block in a leafy section of Long Island.
Dan and three of his roommates contracted the virus in late March. It was a tough two weeks — our only observation via FaceTime coordinated by dedicated and loving house staff. The guys recovered.
We asked that Dan be allowed some freedom with safety precautions (he wears a mask outside). OPWDD said no: Many group-home residents are at high risk due to medical conditions (Dan is physically quite healthy) or because they are aged (Dan is 32). One size fits all.
In the 1960s, institutionalization was the government’s response to developmental disability. Most thought nothing of it until Geraldo Rivera sneaked cameras into the Dickensian chamber.
The late Sen. Robert Kennedy said Willowbrook was caused by a state agency’s “lack of attention, lack of imagination.” Later Gov. Mario Cuomo said Willowbrook happened because “government
was aloof, remote, not responsive.” Déjà vu all over again?
Why don’t we just take Dan home? Because if we do, the state threatens to prevent him from going back, even if his 65-year-old parents got sick.
Dan doesn’t want a tattoo or a perm; he only wants to go to the beach to surf. In 2002 we started a program to introduce people with autism to the healing powers of the ocean. From that was born Surf For All, a Long Beach, LI, charity that has provided thousands of in-ocean lessons to challenged athletes.
Dan wants to step outside, away from the television, away from air conditioning, to taste the salt air seven miles away. The folks at Surf For All have adopted strict post-COVID safety measures, including temperature checks and masks for surfers and students.
His new wetsuit goes unused.
OPWDD won’t let Dan in our car and refuses to let residents ride in agency vans for anything other than doctor visits. Why? Won’t say. (Aloof ? Lack of imagination?)
If he could speak, Dan would tell you he needs the ocean more than another medical checkup.
OPWDD’s sole concession: half-hour family visits to the group home, fully masked. We had ours Father’s Day. Dan gave me a gift — a framed photo of the two of us at a social event — and a card with a cartoon of a bear and the words: “Happy Father’s Day to a dad who can fix anything!”
I have fought many battles for my son over the years, rebuffing demands that he enter an institution at age 5 (the same thing told to Willowbrook parents years earlier). We blocked school officials trying to force him into a residential facility (later unmasked as a bastion of sexual predation). Dan doesn’t understand why he can’t go to the beach. His eyes plead: Dad, take me to the beach.
Willowbrook happened because the residents were locked away; if you didn’t have a relative there, you didn’t know. Today, group-home residents across New York are in the same position and remain on the bottom of the priority list for the Cuomo administration. I wish I could be the dad to fix this.
Jim Mulvaney is a former newspaper reporter. He lives in Long Beach.