Five years after the federal government awarded New York State $82 million to help move 2,000 nursing home residents back into private residences, just 670 have made the transition — even as more than 20,000 New York nursing home residents say on surveys that they would like to leave the facilities.
Claire Cardinale, 57, has been in a nursing home for the past three years, and not for lack of trying to get out.
After two years living in Otsego Manor, in Cooperstown, she learned about the program that helped residents return to their communities. Cardinale suffers from debilitating multiple sclerosis, assigning her to a wheelchair and leaving her helpless to go to the bathroom or shower without assistance, but she wants very much to once again live in her own home. The program was supposed to provide her with home nursing support to do just that.
“I was really very excited,” Cardinale said. She said that the nursing home always cared for her well, but added, “I’m 57 and most of the people I live with are in their eighties and nineties. It’s a very hard place to be. I see a lot of people die here.”
Through the summer of 2011 Cardinale met with caseworkers at the nursing home, a company that provides long-term care for people living at home, and the Catskill Center for Independence, an agency contracted with the state Department of Health to manage nursing home departures, to get her back to her home in East Springfield. They all agreed that she would need at least 60 hours a week of nursing services to live safely in her own home. The federal government would pay most of the bill for the first year, and its usual Medicaid rate after that. The state, however, would only entitle her to receive 25 hours of care at home each week. After four months of stalled progress and 250 pages of paperwork, Cardinale gave up hope.
“I’m just very disappointed in our health care system,” said Cardinale. When asked what she sees in her future, Cardinale said, “I’m going to be in a nursing home.”
The Money Follows the Person program, sponsored by the federal Centers for Medicare & Medicaid Services, aims to improve quality of life and lower states’ Medicaid costs by helping move elderly and disabled patients out of nursing homes and into their own homes and communities. Instead of living in expensive facilities, participants receive professional care at home. Nationally, it aimed to relocate 35,000 residents from nursing homes into home or community care settings by the end of 2011.
New York isn’t the only state to fall short. Nationally, fewer than 20,000 people had moved by the deadline, a recently released performance report by Mathematica Policy Research revealed. But New York has fared especially badly. While the state houses the most nursing home residents in the country and accounts for 1 in 10 of those nationally who say they want to live in the community, New York only successfully moved out 2.5 percent of participants nationally. Texas, by contrast, accounted for more than one-quarter of all transfers.
Recognizing that most states overestimated how many people they could move out of nursing homes, the Obama administration added a provision in the Patient Protection and Affordable Care Act extending the original 2011 deadline for another five years; it also expanded the program to 46 states in all.
The goal posts moved, but government officials said that shouldn’t be surprising for an extremely large effort aimed at individuals with complex and varying needs.
“There is a ramping-up period that’s needed when starting any new program,” said Jeffrey Hall, regional manager for communications with the Centers for Medicare and Medicaid Services. He said that each state has to develop rules and regulations, train specialists and work out the kinks in a system. “All these infrastructures may have been delayed, and they are vitally important to the success of the program.”
The New York State Department of Health administers the state’s federal funds. It enrolled its first participant in the transition program in February 2009, two years after the feds approved New York’s program, said department spokesperson Jeffrey Hammond. “New York uses the funds for several purposes, identified in close cooperation with stakeholder advisors as necessary to improve access to long term community integrated care and services,” he said in an email.
In New York, about one in four residents who have successfully moved out are elderly; the rest are younger people with physical disabilities. And that helps explain why they’re stuck: even more than other types of housing, residences accessible to people with disabilities are in extremely short supply. “The chief barrier to implementation of these programs in New York City is the lack of affordable and accessible housing,” said Susan Dooha, executive director of the Manhattan-based Center for Independence of the Disabled, New York. The center served as the New York City manager of transitions until 2009. She points out that even when low-cost housing is available, it is frequently in walk-up or otherwise inaccessible buildings.
Independent living centers across the state — including some that hold Department of Health contracts to help move nursing home residents out — say burdensome bureaucracy at the state level hinders the process. In a statewide call between service providers in 2010 hosted by the Center for Disability Rights, one of the most common complaints was cumbersome reports that needed to be filled out, consuming by one estimate between 60 and 100 hours of a case worker’s time for each application. Five dozen pages of forms need to be filled out by the patient, service coordinator, and medical equipment providers as well as a regional manager for the state Department of Health — all of which must be mailed or hand-delivered. Participants said backlogs of applicants led to eligible residents simply being turned away.
Residents and their family members agree that the process is cumbersome. James Buscemi likened moving his 76-year-old mother, Teresa, out of a Rochester-area nursing home like “a Keystone Cop comedy. Just that it wasn’t very funny.”
Teresa was admitted to Crest Manor Living and Rehabilitation Center in November 2010 after suffering a stroke. James immediately signed his mother up for a transfer out — he had successfully moved out of a nursing home with one himself the summer before — and service coordinators started on her case. But since the Department of Health does not allow documents to be faxed or emailed, the case workers had to physically pick up and deliver the necessary forms or wait days for papers to arrive in the mail. And if the regional manager for the Department of Health then requested any corrections to the paperwork, as happened in Teresa Buscemi’s case, the process started all over again, adding weeks or even months to the process.
“It was very frustrating for me and my mother,” said Buscemi. The family had hoped to have Teresa back home for the 2011 holiday season, he said. But because of one missed interview, she didn’t make it back until February.
“She was kind of mentally and emotionally breaking down in the nursing home,” he said. “And your mental and emotional state has a lot to do with your healing. I think if you’re at home with your family, the propensity to heal is a lot better.”
But Buscemi was lucky. Service coordinators say that moving someone out can easily take half a year if not longer, sometimes resulting in elderly residents passing away in the nursing home before the state finalizes their approvals to transfer.
Others work and wait for months clinging to the hope that they will be able to leave, only to be deemed unfit to move out. Paul Horton, 57, was moved to the Coler-Goldwater nursing home on Roosevelt Island after a 2007 stay at Harlem Hospital. He expected to be there for a few weeks for physical therapy and then be released to finish a social work degree at Lehman College. The home diagnosed him with spinal stenosis, a crippling disease that limits mobility. Denied a transfer out in 2010, he now spends his days in a motorized wheelchair looking toward his native Bronx behind the gates surrounding the promenade, unsure if he will find a way to return home.
“It’s an institution,” he said of the home. “There are very few other places like it. A mental home, the Navy or the Army, and prison.”
Advocates and service providers have pushed the Department of Health to streamline the application process.
“It’s one of the things that has frustrated us incredibly,” said Bruce Darling, executive director of the Center for Disability Rights, which is contracted with the state to provide services under Money Follows the Person. Darling is one of the early architects and advocates of the program in the state. Early last year the Center, along with the New York Association on Independent Living, drafted a list of recommendations to help speed up approvals. One suggestion was to allow the faxing and emailing of documents and another was to eliminate the requirement that all the signatures on waiver documents be original and located on the same page.
“The micromanagement and this culture of bureaucracy interferes with people moving back into the community,” he said.
But some providers say that the paperwork is a necessary step to ensure adequate care for disabled residents.
“Sometimes the process—completing the plans and then going through all the corrections—can be difficult. But it’s necessary,” said Sheila Middlebrook, a case worker at Center for Disability Rights. The “checks and balances” of the system, she said, keep needy residents protected from poorly designed care plans and helps prevent accidents once they are out of the facility.
“It can be time-consuming and frustrating at times,” she said, “but I think in the end, it makes for a safer plan.”
By the time that plan is complete, however, housing opportunities are often long gone. “I’ve lost at least three or four different units because the Department of Health wasn’t able to approve it before the landlord filled the unit,” said Mel Tanzman, the executive director of Westchester Disabled on the Move, which is contracted with the state to help manage transfers in the region. “It becomes almost like a Roach Motel. You can check into a nursing home, but you can’t check out so easily.”