Thursday, August 14, 2008

Young people with brain injuries want to live in community, not nursing homes

A great story from The Boston Globe about young people with brain injuries who want to leave nursing homes and live with people their own ages in the community.

Published August 14:

CANTON, Mass. - Just 29 years old, Kaya Alexander (pictured left) 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.