Robbie Cunningham would like to live independently but sees no way to get out of the Coler-Goldwater Specialty Hospital & Nursing Facility, his home for the past four years. “I’m not sick,” he said. “I’m a quadraplegic."
In the nursing home, he explained, “I have tremendous constraints on what I can do. I would like to choose what kind of food I eat, when I eat and when I go to bed.”
Cunningham, 52, feels safe at Coler, a sprawling Roosevelt Island facility, but he doesn’t feel free. “As long as I’m alive, I want to keep moving,” said the Manhattan makeup artist, who was paralyzed from the neck down in a diving accident seven years ago.
According to a 1999 Supreme Court decision, people with disabilities have the right to live in the most integrated setting appropriate to their needs. But Cunningham and thousands of other relatively young people institutionalized by strokes, heart attacks, neuromuscular disorders and traumatic injuries are trapped in nursing homes — segregated from society by bureaucratic bungling and foot-dragging.
“You need a book on how to escape the nursing-home system — you really do,” said Jim Cesario, outreach coordinator at the Mount Sinai Spinal Cord Model System.
These patients often wind up in nursing homes as a result of hospital social workers under pressure to quickly come up with an acceptable discharge plan, said Cesario. When a social worker locates a place in a facility with on-site services, “Boom! It’s done!”
A catastrophic medical event may not only disable and impoverish a person, but render them homeless. A newly disabled person may no longer be able to afford his home — or be unable to return to it because it was not designed to accommodate a motorized wheelchair. If family and friends are unable to care for the person, they may be sent to a nursing home.
According to 2010 data from Centers for Medicare & Medicaid Services, 14.5 percent of New York State’s 106,931 nursing-home residents are under age 65. Of all residents, 22,248 formally have indicated their desire to live in regular housing.
This scenario costs taxpayers: Nursing-home care in New York State tallies between $114,000 and $119,000 a year per person — among the highest rates in the nation, according to the Genworth Financial Cost of Care Survey.
A policy paper issued by the Center for Disability Rights and the New York Association on Independent Living showed how the state could save $1 billion over five years by redesigning services to be compliant with the federal ruling. (Medicaid usually pays for nursing-home care. Community placements vary in cost but almost always are less expensive.)
WHY THEY’RE TRAPPED
So why are people with disabilities often warehoused against their will? Advocates said the reasons are manifold:
- A lack of accessible, affordable housing for people reliant on motorized wheelchairs.
- An opaque and tangled bureaucracy with no central agency responsible for enforcement: Despite 22,248 people having indicated their desire to live in the mainstream community, the state Department of Health has enrolled only 900 participants in the Nursing Home Transition and Diversion Waivers program. Obtaining waivers and subsidies is a time-gobbling process riddled with difficulties, experts said.
Golden Willoughby, 53, a retired lawyer who has been living in Coler-Goldwater since 2009, applied to Medicaid for a housing voucher. Medicaid sent him to the state health department. “They sent me to CASA [Community Alternative Systems Agency] and said I could be eligible, but I need housing first in order to get it!”
It’s true that a person requesting CASA services must be living in the community or have a signed lease so that the agency can assess their situation, said an HRA spokeswoman. But Willoughby, she added, should have been directed to the Visiting Nurse Association of Staten Island, which handles waivers for local patients. The VNA did not respond to requests for comment.
- The “institutional bias”: “So many people make money off the system [that] trying to change it is like trying to change the economy during Reconstruction,” said Bruce Darling, director for the Center for Disability Rights in Rochester.
- Poverty: Advocates said that 70 to 80 percent of the severely disabled are unemployed. Many lose their jobs when tragedy strikes. “If you have SSI [federal Supplemental Security Income], no one is willing to take you. You have to put your name on a NYCHA [NYC Housing Authority] list,” and the waits can be interminable, Darling said.
NYCHA did not respond to a request for comment.
Several hundred of the 1,300 residents at Coler are eligible to live outside the facility, said NYC Health and Hospitals Corporation spokeswoman Ana Marengo.
Even so, Coler staff located placements for about 200 residents last year. However, challenges abound in trying to secure housing appropriate for wheelchair-bound individuals., Marengo explained.
Coler has failed to find a residence for Willoughby, Marengo said, because he wants to live in Manhattan with his wife, Maxzine, a Coler resident — who also is in a wheelchair — her two young daughters and his teenage daughter.
City Hall spokeswoman Evelyn Erskine said the Department of Housing Preservation and Development has created 40,430 new residences and preserved 72,702 units of housing during Mayor Michael Bloomberg’s tenure. In new units, 5 percent are set aside for people with mobility impairments and 2 percent for people with vision and hearing impairments.
Set-asides are not the same thing as units built to spec for people in wheelchairs, said Darling. Regular residences — while theoretically adaptable — may not be designed to allow a disabled person to cook or use the bathroom, and they often are given to able-bodied people.
FIXING THE SYSTEM
Experts said reforms are needed to abolish segregation of the disabled. Among them:
- Expedited enrollment: Simplifying paperwork and documentation requirements could reduce the time it takes to get a Nursing Home Transition and Diversion Medicaid waiver approved. This would curtail unnecessary admissions to facilities and prevent many disabled people from losing their homes.
- Increased flexibility: There is a pilot program in which the “money follows the person,” but the government needs “a more flexible understanding of disabilities” so that disabled people have more input as to how the money they receive is spent, said T.K. Small, a Brooklyn disability rights attorney.
- More housing: The “woefully inadequate” housing set-asides for the disabled should be doubled and more custom units built, said Darling.
After all, Darling added, “there isn’t any other group of people who are illegally locked up like this who haven’t done anything wrong. There’s no other group of people who are blameless but, through circumstance, have lost their rights to live in freedom.”