ELLSWORTH, Maine — Linda Elliott wants for her son what any mother wants — independence — and she’s not afraid to nudge him in that direction.
“He’s mad at me right now,” Elliott said this week from her office at Courtland Rehabilitation and Living Center, a nursing home in Ellsworth. “He says I push him too hard.”
Jake Van Meter, 27, wants independence too, but his path toward self-sufficiency differs from most adults his age. He has cerebral palsy, a brain disorder that limits his speech and motor skills, and although cognitively capable — he’s taking college classes at the University of Maine — he still needs daily care and supervision.
Until now, nursing homes have been his only option and so, for the past nine years, his home has been his mother’s workplace.
“I don’t know any 27-year-old that wants to live in a nursing home,” Elliott said.
It turns out, there are many others around the state like Van Meter who are forced to live in less-than-desirable situations. As many as 40 have signed on to a class-action lawsuit filed in U.S. District Court that claims the state is in violation of the Americans with Disabilities Act because it has failed to provide alternative housing opportunities.
Van Meter and two others, Eric Reeves, 34, and Adam Fletcher, 29, actually were the lawsuit’s original plaintiffs when it was launched in December 2009.
As the lawsuit proceeds at a normal but protracted pace, those three plaintiffs and four other adults living in the greater Bangor area could have a new home before the legal matter is settled.
Elliott, the driving force behind the Jacob Brewer Home, a housing project for adults with disabilities, recently has partnered with Community Housing of Maine and the Charlotte White Center to create a seven-unit apartment complex.
“This would be a huge step for them. It would create an atmosphere where they could be around people like them but still be independent,” Elliott said. “It’s all very exciting.”
Cullen Ryan, executive director of CHOM, said he was thrilled to get involved with the project.
“It fits right into what we try to do, which is create supportive housing for the most vulnerable,” he said.
The Maine Housing Authority has provided $980,000 in supportive housing grant funds, Ryan said, and CHOM is close to acquiring the former Knights of Columbus building on Court Street in Bangor to renovate into seven apartments. The process is expected to take about a year.
“It’s going to take a little longer than some would like because we’re combining state and federal resources, but we’re confident,” Ryan said.
Once the housing is built, adults like Van Meter could move in. Most are eligible for in-home care based on their diagnosis, but the maximum amount of service is 60 hours a week. Adults with cerebral palsy often need more than that.
That’s where the Charlotte White Center comes in. The Dover-Foxcroft community health agency that provides services for those with cognitive and developmental disabilities has signed on to staff the new apartment complex 24 hours a day.
The question of long-term care and who will pick up those costs likely will be addressed by the pending lawsuit, which Elliott said was the last resort after years of inaction by the state.
Typically, the Maine Department of Health and Human Services determines a person’s level of support, including housing, first through an individual assessment and then by availability. However, the only facility in the state that accommodates young adults with disabilities such as cerebral palsy is in Scarborough. It’s full. Others throughout New England have long waiting lists and there is no guarantee, Elliott said.
That’s why Van Meter and others have been living in nursing homes. Interestingly enough, people like Van Meter who are intellectually high-functioning do not qualify for the same level of services as someone with a diagnosis of mental retardation or autism.
“Until now, these adults have essentially been scattered about the state in nursing homes. Some even have elderly roommates. That’s just not a good situation,” Ryan said.
The housing project in Bangor could change the lives of seven individuals, but the lawsuit could do more, Elliott said. It could lead to changes in state policy that could affect every case in the future.