Trapped in a Nursing Home—at 26

by Louise Dewast

Facing the patio window, Samson Delgado smokes a cigarette, his eyes focused on a tablet positioned on a tabletop in front of him. One of Isabella Geriatric Center’s white-haired residents is sitting nearby, staring into the distance. Samson is 26.

Between lunch and dinner, physical therapy and appointments with his social worker, the disabled young man spends most of his days on the center’s patio or at the nearby café, instead of on the sixth floor with his blind 90-year-old roommate who suffers form kidney failure.

For the past year, Delgado, like thousands of other young disabled people in the country, has been living in an institution he calls home. He has been trying to get public housing but has been denied twice for lack of income, a bureaucratic quirk that has trapped him there for over a year. Delgado says disabled individuals in New York are treated as an afterthought when it comes to housing.

But he has reason for hope, as do some other people in similar situations. For one thing, on May 5 Mayor Bill de Blasio announced his plans for affordable housing, and while the report does not detail specific changes to the public housing system for the disabled, advocates say it is the first time a New York mayor recognized the issue of accessible and affordable housing for people with disabilities.

Moving out of the nursing home would not only be a relief for Delgado, it would also be a relief for taxpayers. In New York, nursing homes cost $137,076 on average per person per year, according to the Department of Health. Yet the cost of providing long-term care at home could be 50 percent less than the cost of Medicaid-financed nursing home beds according to a report published in a 2009 Health Affairs journal. According to the Mayor’s report, providing affordable housing to the most vulnerable residents is necessary, “because it is the moral thing to do, but also because it is fiscally responsible.”

The exact number of young and disabled living in nursing homes is unknown, but advocates say Medicaid could be covering up to two million of them nationwide. As a way to reduce taxpayer expenses, advocates have been pushing Medicaid to create housing subsidies for disabled people who do not need full time care. And to some extent, their efforts are paying off.

Governor Andrew Cuomo announced in November that an agreement had been reached between the state and the Centers for Medicare and Medicaid Services to reinvest $8 billion of $17.1 billion in federal savings –generated by the State’s Medicaid reform efforts– in new affordable and supportive housing across the state for high-cost Medicaid members.

Cuomo’s Medicaid Redesign Team recognizes that providing supportive housing is “a cost-saving measure to keep chronically homeless and people with disabilities stably housed and out of emergency rooms.”

While changes are happening in Albany and inside City Hall, people like Samson Delgado, whose lives have been put on hold, have bee longing for immediate and concrete changes.

“When you’re working in a system that doesn’t even recognize the disabled as a protective class, it’s like trying to move a mountain,” said George Gallego, founder and CEO of Wheels of Progress, a non-profit that helps disabled individuals who want to transition from institutions to independent housing.

Two years ago, on July 22, Delgado was driving late at night in Isabela, Puerto Rico. It had been raining and the road was wet. The college student was going to pick up his mother from the airport. But he never made it there: instead, he woke up in an emergency room, paralyzed from the chest down.

Delgado was eventually transferred to another hospital, where he started developing bedsores. “The place was a dump,” said his mother, Dionn, in a recent interview. As he sank into depression, Dionn decided to move back to New York, where Delgado’s grandmother lived. Soon after arriving at JFK airport, Delgado was admitted to Mount Sinai Rehabilitation Center. After three months, he was discharged. But his grandmother’s apartment wasn’t accessible or equipped for wheelchairs and he couldn’t afford a market-rate rent. He had nowhere to go.

“Samson is homeless,” said Gallego, “a different kind of homeless.”

Delgado applied for Medicaid, and within days, he was sent to Isabella Geriatric Center, at 515 Audubon Ave. in Washington Heights.

At first, Delgado was thankful to have a roof over his head in the nursing home. But what he thought would be temporary soon became a long-term ordeal. Delgado says he doesn’t need full-time care. “I just need someone to help me dress, clean and give me my pills,” he said. “This place makes you feel like they own you, like they’re your 24-hour babysitter. You can’t do certain things, you can’t go out alone, and you feel limited.”

As is often the case, decisions relating to long-term care services are dictated by what is reimbursable under federal and state Medicaid policy rather than by individual needs. Housing experts estimate that among the 123,000 nursing home residents in New York City, between 10 and 15 percent could and would like to live independently.

The problem is this: most of these individuals are low-income and rely on benefits like Supplemental Security Income, and thus rarely comply with affordable housing income requirements.

For example, to get a one-bedroom apartment costing $844 per month at Harlem River Point South, a new affordable housing complex at 200 East 131 Street, the minimum income required by the developer is $30,926.

In New York, the average annual income of an individual receiving the SSI benefit is $8,714—that’s 19.2 percent of the national median income and 22 percent below the 2012 federal poverty level, and way below the affordable housing criteria.

Linda Couch, senior vice president for Policy and Outreach at the non-profit National Low Income Housing Coalition, argued that housing is “a basic human need,” and that this situation is deeply unfair. “I don’t believe anyone in the modern world thinks it’s ok to have someone in a nursing home because they are poor,” said Couch. She is one of the advocates who believe in housing subsidies for healthcare purposes. “It is a fantasy to think that the private sector is going to provide for these people, or that they will be able to earn enough to afford market rate housing,” she said.

Programs like the Nursing Home Transition and Diversion Medicaid Waiver, a state subsidy, do exist to help New Yorkers with disabilities access “safe, decent, accessible and affordable” housing. Under the program, they only have to pay 30 percent of the rent in public housing projects.

The challenge is that many housing agencies and developers are unfamiliar with this subsidy. “They just don’t know about it,” says Gallego. “HUD didn’t market it properly when it launched in 2007, and out of 5,000 waivers they’ve only used 500.”

Existing subsidies are “misaligned with the timing and requirements of HPD’s policies and procedures,” according to the Mayor’s report. De Blasio says he will “step up marketing efforts and aggressively match available subsidies for people with disabilities to affordable housing developed through HPD programs,” in order to “ensure maximum participation” for people with disabilities.

Delgado applied for the nursing home transition subsidy nearly one year ago. He was approved twice for interviews with public housing authorities, but was ultimately denied because he didn’t have the subsidy yet.

He was called for a third interview on Good Friday. It was good timing, as he had just been approved for the subsidy. “The waiver should send a green light to the housing authority,” he said, and if everything goes as planned, he would be approved for public housing. But Delgado is prepared for the worst. “I’ve learned not to expect much,” he said.

Medicaid program officials said they were aware of the problem for people with physical disabilities, but would not discuss it on the record or disclose any specific plans to remedy the issue. “It’s true that there’s an imbalance in the funding,” said a Medicaid official during a phone interview. “Those with physical disabilities are overlooked in comparison to those with intellectual development disabilities.” The problem, the official explained, is that the term “disabled” is used loosely, and, as a result, funding goes to any group that claims to have a disability.

Another problem, officials and housing advocates say, is the lack of affordable housing units in the city. While the mayor campaigned on a promise to address this issue, many are saying he should focus on those who make $40,000 or less, like Delgado.

“Working families at the bottom end of the ladder – those making less than $40,000 a year — have seen their incomes stagnate, while the supply of rental apartments affordable to them is rapidly evaporating,” said Scott Stringer in a recently released report on housing. “Programs need to be geared to the specific income needs of this burgeoning group.”

For housing advocates like Linda Couch, “it is high time for the state to figure out a way to extract savings from healthcare into housing and make clear that housing money is healthcare.”

Meanwhile, Delgado’s mother is restless.

“You never get used to seeing your son in a nursing home,” said Dionn. “He used to be such an active boy, playing soccer, going to college. Now, I see him cry and say certain things.”

But Delgado holds on. His older brother calls him a lion. And it’s deserved. At the time of his accident, he was one credit away from graduating from the University of Puerto Rico. In January, he decided to take his final class in managerial economics online. Long hours of studying at the coffee shop on the ground floor at the center paid off. He received a B plus. This coming summer, he’ll achieve what few disabled before him have done: he will have graduated from college while living in a nursing home.

“Hopefully, I’ll be out of here by the end of the summer and I’ll be able to start my career as an accountant,” he said, “I can’t walk, but I can still have a happy life.” He was recently granted his own individual room at Isabella. “It’s a nice change,” he said.

On May 5, Delgado got a phone call. It was a follow-up from his interview with the housing authority. His mother was with him, so he put his phone on speaker mode. “Congratulations,” they said, “You’ve been approved for the apartment.” Dionn jumped up and down in joy. It was finally over. Delgado expects to move out of the nursing home and into an apartment some time this summer.