PENOBSCOT, Maine — The 150-square-foot room has all the comforts of home: a cozy bed, a bureau, a cluttered computer desk. Red Sox posters adorn the walls, and pet fish swim around in a glass tank. There is a private bathroom.
For the room’s tenant, Eric Reeves, the room is more than adequate; it’s just not home.
“The staff here is great. We laugh and joke,” Reeves said recently from the Penobscot Nursing Home, his residence for the last two years. “But, do I think this is the right place for me? No, I don’t.”
Reeves is 33 years old. He recently got engaged. He still has a lot that he wants to accomplish.
He has limitations, too. His speech and motor skills are severely limited by cerebral palsy, a chronic brain disorder that affects roughly two out of every 1,000 newborns. He uses a wheelchair and admits that he can’t take care of himself fully, “not because I don’t want to — because my body won’t let me,” Reeves explained.
So, here he is, stuck in a nursing home because no other options exist, surrounded daily by death and dying even though his life expectancy is normal, and clinging to the hope that his stay is only temporary.
Reeves and two other Hancock County men with cerebral palsy, Jake Van Meter and Adam Fletcher, have sued the state of Maine for violating their rights under the Americans With Disabilities Act.
In a lawsuit filed Dec. 18 in U.S. District Court in Bangor, the three men claim that state policies have forced them into undesirable living situations. Van Meter, 26, lives in a nursing home in Ellsworth. Fletcher, 28, who is from Ellsworth, has spent the last three years at a similar facility in Braintree, Mass.
Maine Department of Health and Human Services Commissioner Brenda Harvey, who is named as the defendant in the lawsuit, has declined to comment for this story. Maine Attorney General Janet Mills, whose office is defending the state in the lawsuit, said she’s still in the fact-finding stage and declined to talk about specifics.
“We’re certainly sympathetic with the situation they find themselves in,” Mills said this week. “With any case there are legal issues and factual issues, and I suspect this case is no different.”
DHHS Deputy Commissioner for Integrated Service Muriel Littlefield said that, in general, the state determines the level of support services — including housing — through an individual assessment and then availability.
At a time when budgets are shrinking, particularly in the area of health and social services, availability is shrinking as well. The legal fight could come down to lack of funding, and it may last longer than either side would like.
Reeves knows this. He’s prepared. He plans to approach the lawsuit the same way he approaches his disability.
“If you let it drag you down, it will,” he said. “You have to stay positive and push through.”
Disabled, but not in spirit
Reeves and Van Meter have become close friends through their shared disability, their similar living situations and, now, the lawsuit.
Van Meter has spent the last eight years at Courtland Rehabilitation and Living Center, in a room much like Reeves’ room. As his elderly housemates live out their remaining months, Van Meter has been taking classes at the University of Maine trying to further his education.
Because his speech is more limited, Van Meter has created a Web site to help him express his thoughts.
“I do not want to spend the rest of my life here,” he wrote recently. “We live in a society that places great emphasis on independence, personal rights, and ensuring that each living creature is living in an environment suited to them … yet we allow young individuals in need of physical assistance to be placed in nursing homes.
“We have no age appropriate settings aimed at fostering a normal social lifestyle. It does not seem right or fair.”
Reeves feels the same way. He used to live with his parents until it became too difficult for them.
There’s another reason, too.
“Don’t get me wrong, I love them,” he said. “But sometimes I like a little me time.”
Van Meter’s mother, Linda Elliot, said her home in Ellsworth is not equipped for her son anymore. Besides, she wants him to live on his own, just not at a nursing home.
“I was that age once. He wants and deserves his independence,” said Elliot, who works at the facility where her son lives. “The hardest part is knowing that, if he had a different type of disability or a lower IQ, this wouldn’t be an issue.”
Reeves’ fiancee, Tonya Duprey, for instance, receives better services because she has a diagnosis of mental retardation. Reeves said he has heard of people going so far as playing up their disability to receive adequate housing. It shouldn’t be like that, he said.
If Reeves were to live at home, he said, he would have access to 44 hours a week of personal care assistance through MaineCare. That’s simply not enough.
If he resides in assisted-living facilities, he has access to 24-hour care, but nursing homes are the only option.
The only facility in the state that accommodates young adults with disabilities such as cerebral palsy is in Scarborough. Currently, it’s full. Even Littlefield at DHHS admitted that many permanent housing facilities have waiting lists, although she said that does change constantly.
“What we promote and what we want to do is allow them to live as close to their homes and communities whenever possible,” she said.
Reeves wants that too, but he doesn’t want to be in a nursing home.
“I want to be a productive member of society,” he said. “This place isn’t conducive to that.”
A place of their own
Elliot said she never wanted her son’s battle to result in a lawsuit. After years of advocating for better services, though, their voices have not been heard.
Lawyers from Maine Equal Justice Partners, the Disability Rights Center of Maine and the National Health Law Program were quick to jump in and represent the three men in the lawsuit. They are doing the work pro bono.
Jack Comart with Maine Equal Justice Partners said he and others have had meetings with DHHS about changing policies and finally settled on an agreement about how to implement changes.
“We thought we could cut to the chase with these three [Reeves, Van Meter and Fletcher] to find places for them, but we haven’t heard from the state,” Comart said. “They never engaged us in a discussion. So, it’s come to this and it’s a shame.”
The 20-page court document seeks an injunction that would force the state to provide support for the men in a community housing setting. It also calls for specialized services and a change in state policies that have prevented the men from living more independently.
“The plaintiffs are currently segregated in nursing facilities, where they do not receive even minimally adequate training, habilitation or support services, as required by law,” the lawsuit states. “Each of the plaintiffs strongly desires to leave the nursing facility and live in a setting that is more integrated in the community.”
The average cost for a community-oriented facility with full services is about $300 per person, per day. A nursing home, by comparison, costs between $150 and $200 per person, per day. The state has an obligation to pay whatever is entitled, but Mills did not deny that the economy has affected every agency and department.
The Attorney General’s Office has 60 days from the date the lawsuit was filed to issue a response. Then, a federal judge will set a hearing date.
As the lawsuit progresses on what is expected to be a painfully slow path, Van Meter and Reeves are working on something else: a place of their own.
The two friends, with help from Van Meter’s mother, have been raising money to build a group home, the Jacob-Brewer Home, where Van Meter, Reeves and others might live. They already have land — 14 acres in Hancock that has been in Elliot’s family for years, unused.
Initially, the housing project was projected to cost about $1.5 million, but Elliot said with the down economy she has been told a contractor could do it for around $850,000. They are happy to raise that money — even if it takes years — but they need the state to pick up the cost of services once it’s built. That’s where the lawsuit comes in.
“If this helps raise awareness, it could provide huge benefits, not just for Jake and Eric and Adam, but for others,” Elliot said.
Meanwhile, Reeves has granted interviews from media outlets across the state and region to get his story out. He said it’s silly, but he’s even trying to contact Dr. Phil or Oprah Winfrey to take up his cause.
Reeves also said he has been inspired by his friend Jake, who has been taking college classes.
“I feel like if he can do it, so can I,” Reeves said. “Why should I limit myself?”
More information about Van Meter and Reeves can be found at www.jacobbrewerhome.org.