Many brain injury patients poised to quit nursing homes for freer lives
Settlement to let Medicaid cover alternative care
CANTON - Just 29 years old, Kaya Alexander lives in a nursing home. She had no other options after a 2006 car accident broke her neck, damaged her brain, and sheared off three fingers of her left hand, the only hand she can move.
"I can't take it here," she told visitors in her near-whisper, as she reclined in her wheelchair in the sunny parking lot outside the Tower Hill Center nursing home. "This place makes me wish I was dead."
"I want to be in a program with people my age," she said. "Everybody here is like 100."
An all-but-final court settlement may soon begin to help Alexander and as many as 2,000 other Massachusetts residents with brain injuries leave nursing homes, in a slow but sweeping exodus that advocates and officials say is unprecedented in the country.
The advocates who filed the lawsuit last year in US District Court in Springfield estimated that among about 8,200 nursing home residents with brain injuries in Massachusetts, at least one-quarter wanted to live outside - and could, with the proper help. The patients are of all ages, and under federal law, they have the right to live as normal a life as their condition allows, the plaintiffs argued.
"This is a landmark case for brain injury nationwide," said Arlene Korab, executive director of the Brain Injury Association of Massachusetts, which led the suit demanding better community-based services from the state. "We are the first brain injury association - and there are 47 across the country - who have successfully litigated and won."
Medicaid, a federal and state healthcare program for low-income and disabled people, traditionally pays for care in institutions, and until now, Massachusetts residents with brain injuries who needed long-term intensive support or round-the-clock care covered by Medicaid could generally get it only in nursing homes. There was one small exception: a Medicaid "waiver" allowing 100 people to receive community care.
The settlement is expected to greatly expand that community-care exception for people with brain injuries - accident victims, stroke patients, and others - and redirect Medicaid money from nursing homes into community care. It envisions that new living arrangements would be developed for people with brain injuries in group homes, special apartments, or at home with their families, with intensive help. This array of new services might cost no more, on average, than nursing home care.
Korab said she and others had pleaded with the administrations of five previous governors for more brain-injury services, to little avail. But the suit's arguments jibed with the Patrick administration's philosophy that whenever possible disabled people and the elderly should live in the community, said Jean McGuire, the state official who oversees disability programs.
From very early on, she said, "It was clear that a settlement strategy was the right strategy." The sides reached a settlement in June. Federal Judge Michael A. Ponsor is expected to approve the agreement soon after a Sept. 16 hearing, but already, McGuire said, state officials are writing proposals and making plans.
Nursing homes did not oppose the suit, said Scott Plumb, senior vice president of the Massachusetts Extended Care Federation, which represents them.
"If the person wants to be in the community, and can be cared for there safely and effectively, that's where they should be," he said.
Under the proposed eight-year settlement, the state would have six months to ask the federal government to allow about 300 nursing home residents with brain injuries to move to new living situations beginning as soon as next summer. And as many as 200 other residents per year are to be helped by a broader Medicaid program that the state is putting into place to provide more long-term care in the community for a variety of conditions, called Community First.
Specialists say nursing homes generally do not provide the kind of rehabilitation services people with brain injuries need to improve.
"Many people with brain injuries can keep making gains for years with the right help," said Dr. Mel Glenn of Spaulding Rehabilitation Hospital. But if they end up in nursing homes for lack of other options, they are unlikely to keep getting that help, and they often lose ground, both physically and mentally.
When Alexander was at Boston Medical Center in the weeks after her accident and the staff would get her up every day, her neck was largely straight and she could move her arms and legs better, said her mother, Victoria DeCoteau. "She'd say, 'Mummy, look what I can do!' " DeCoteau said.
Now, her neck leans downward toward her shoulder, and her arms and legs are still. "Kaya's just given up," her mother said.
"Living in a nursing home isn't really living," Cathy Hutchinson, lead plaintiff in the case, said in an e-mail she typed using special devices adapted to her full-body paralysis caused by a stroke. "I was simply existing in a wheelchair."
"For people with brain injuries statewide, the settlement will mean they can live independently in their own community, close to family and friends," she wrote.
The settlement will resound nationwide, said Susan Connors, president of the Brain Injury Association of America. "It paves the way for advocates in other states to bring similar actions," she said, particularly those in about 25 states that already have Medicaid waivers for brain-injury programs.
Brain injuries vary greatly, from war wounds to falls, and the damage they cause also runs the gamut from coma to slight memory problems. An estimated 5 million Americans are living with damage from traumatic brain injuries, such as car accidents, and another 10 million with damage from "acquired brain injury," such as stroke.
McGuire said she was recently in a nursing home and met a man in his early 50s whose wife had had a stroke. He told her, she said, that all he wanted to do was bring his wife home and that he could do that if the state covered about $25,000 in care so he could still go to work. "You won't give me that," he told her, "but you'll pay the nursing home $80,000 a year to keep her here."
Each nursing-home resident who wants to leave will be carefully evaluated to make sure it would be safe, McGuire emphasized. For example, she said, a resident might need help to get better at swallowing or to improve posture in order to be able to sit up and eat in a community setting.
But ultimately, said Steven Schwartz, lead lawyer for the Center for Public Representation, which brought the suit along with the Boston law firm Wilmer Cutler Pickering Hale and Dorr, for hundreds of people the settlement will mean "a ticket home."
Carey Goldberg can be reached at goldberg@globe.com. 