Saturday, November 28, 2009

Shortage of group homes in Maine means many young disabled people stuck in nursing homes

From Maine Public Broadcasting: Jake Van Meter, a young man from Ellsworth with cerebral palsy, has spent the past six years trying to find a new home. He's asked the state to help him move into a group home with others his own age, but the process has been delayed by budget cuts and by a shortage of group homes in Maine. And, as Anne Mostue of Maine Public Broadcasting reports in the first of a two-part series, Jake is not alone:

The Courtland Rehabilitation and Living Center in Ellsworth (pictured) is occupied mostly by people who are elderly or recovering from serious illness. And then there's Jake Van Meter. He's 26 and in college, and so he feels more than a little out of place.

On this morning, Jake is visiting with his mother, Linda Elliot, who also happens to work at the Courtland Center. Jake is hard to understand, so as he talks, his mother translates. "He's going for his associate's," she says.

Jake's been living in the nursing home for about eight years, since before he graduated from high school. It provides 24-hour care and a room with a TV. Friends used to stop by after school. But following graduation, his mother explains, all that changed.

"Things kind of shifted," she says. "Friends moved away, so they weren't visiting him anymore. He lost several rommmates that had died. He wasn't getting out to activities because he wasn't involved in school on a daily basis. So it was, 'No, I don't want to stay here forever. I want to get in the community where I can interact with my peers, I can go to school, do some volunteer work.'"

While he is severely limited with what he can do physically and verbally, Jake completed high school with honors. His hope is to complete his degree in mental health, and live in a community with people his own age. For the past six years, Jake and his mother have been asking the state to help them find a way for him to move out of the nursing home and into a group home. But very few of those exist.

"He needs 24-hour assistance, so there weren't resources in the community living on his own in an apartment to get an aid for 24 hours," she says. "So then we started looking at group homes but all the group homes are with individuals with cognitive deficits as well, and he really wanted to be where he was stimulated intellectually. So then we started that search and found that there aren't any."

The state covers the bill for Jake to live in a nursing home, and it costs about $175 dollars a day. A group home would cost closer to $300 a day. Linda, Jake and others in the cerebral palsy community have been raising money to help open a group home near Ellsworth.

"We want to try to help the state as much as we can, but we don't want dollars to be the deciding factor of these guys' future," Elliot says. "And everybody keeps saying 'be patient, be patient.' I mean, already it's been six years that he's wanted to get out and every day that goes by and every year that goes by he's been thinking, 'Do I have to be patient until I'm age appropriate to be in this place?' I mean, how patient do I have to be?"

Through the United Cerebral Palsy organization, Jake and his family finally turned to the Disability Rights Center of Maine and the Maine Equal Justice Partners in Augusta.

Jack Comart is with Maine Equal Justice Partners and the lead attorney on Jake's case. "The state, under the federal Nursing Home Reform Act, is required to provide Jake and people in his situation with the type of training and support to enable them to improve and maximize their skills and abilities and to live independently."

Comart notes that the Americans with Disabilty Act requires the state to provide Jake with specialized services and the ability to live in the most integrated setting possible. And he says Jake's situation is not uncommon.

"At this point we're representing three young adults with cerebral palsy who want to get out of the nursing home and into a setting more integrated in their community where they can participate more fully. There are other people and the state has tentatively agreed to look at those other people to see what their needs are and then to figure out what to do in those situations."

Maine Equal Justice Partners and the Disability Rights Center of Maine are asking the state to respond with a plan for Jake and others like him by December 7th. If the state does not comply, the groups will file a lawsuit. The State Department of Health and Human Services declined to comment on Jake's case or on the potential lawsuit because it has yet to be filed.