Independent living case of Maine men with CP to go to court

From Maine Public Broadcasting:

Jake Van Meter (pictured) is a 26-year-old man from Ellsworth with cerebral palsy who has spent the past six years trying to move out of a nursing home, and into a group home. He wants to live with two other men with CP, 33-year-old Erik Reeves of Penobscot and 28-year-old Adam Fletcher, who are also living in nursing homes in Maine and Massachusetts.

Jake has been asking the state for years to allow him access to what he says would be more appropriate treatment and living conditions.

He says if the state wants to go to court, so be it. "If they want to go to court, then we'll go to court," he says, as his mother repeats his difficult to understand words.

"We tried to be civil," Jake says, followed by his mother's echo. Elliott says there are two providers willing to care for the men. She's also raising money to construct a home for them on a piece of land in Hancock.

"Jake's going to school, Eric's working on his GED. And they all feel that they can be a better participant in the community if they're in the community," she says. "We don't want it to be a burden, a financial burden, to the state. We really think that if we look at things creatively that we can come up with something that is relatively the same expense. Each day that they stall is another day that these young adults' life has been wasted."

But Elliott says the state Department of Health and Human Services isn't willing to negotiate a new way of compensating through the MaineCare program. That's why Jake, Adam and Eric, with the help of the Disability Rights Center of Maine and the Maine Equal Justice Partners, are suing the state in federal court.

"Since last summer we have identified the issue with the nursing home reform amendments and that the state was out of compliance and have been trying to work on that with the department," says attorney Staci Converse. Converse says the response issued Monday evening by the state attorney general, which denies several of the plaintiffs' allegations, is disappointing.

"They chose to spend the scarce resources on going forward with this litigation and paying lawyers instead of providing the medical care and services that our clients need," Converse says. "At this point I'm trying to discern what their position is because I believe it's very clear they're in violation of federal law and from their answer it doesn't really show me much beyond that."

In its 18-page written response, the attorney general concludes that the "Defendant lacks of sufficient knowledge and information as to the allegation that plaintiffs would benefit from specialized services provided in a community-based setting or whether the community is the most integrated setting to meet their needs and therefore denies them."

The response goes on to say that, "Plaintiffs have failed to exhaust appropriate and available state regulatory and statutory remedies, and their complaint should be dismissed."

Says one advocate, the AG's response is a bit of a departure from past cases. "In the past we've been able to engage with the department more to try to resolve issues, and, for some reason, in this case, they're not doing that," says Jack Comart, an attorney with Maine Equal Justice Partners.

He says his clients deserve to know why the department won't sit down and brainstorm a way for the men to live independently, and he doesn't think a group home would cost any more than the services the men receive in an institution.

"For many years they've been asking the department to come up with another solution, and the department hasn't done it, we've asked and they haven't done it, and we're forced to bring this lawsuit, but we still haven't seemed to have gotten their attention,"
Comart says.

Under the MaineCare rules, there are really only two living options for Mainers with normal intelligence and severe physical or speech problems: They can live with relatives or in a nursing home.

Jake Van Meter and his mother Linda Elliot say their case isn't about bringing attention to Jake and his friends.
"The cause," Jake says.

"Oh, onto the cause," his mother explains. "He's trying to redirect it off of himself and onto the cause. Because it's not just about him, it's about many in the same situation. I would hope that anybody who feels the same way that we do about this, and feels that young individuals should be in the community, versus long term care facilities will write their congressman."

The case will move forward with more litigation, but the men's attorneys hope to settle out of court. The state Attorney General and Department of Health and Human Services declined to comment for this story, as is their policy on pending litigation.