AUGUSTA, Maine – Families and advocates for individuals with disabilities are upset over proposed changes in the way the state allocates services.
They’re petitioning lawmakers to intervene. It’s an unusual move, but those concerned say a new scoring system proposed by the Department of Health and Human Services is far too simplistic and would dramatically cut services for individuals who need intense support.
There’s one question that’s constantly on Cullen Ryan’s mind. He’s the father of a 19-year-old son with significant disabilities.
“The biggest concern parents have is, what happens when we die?” he says.
Who will take care of his son and help him flourish? Ryan, the chairman of the Maine Coalition for Housing and Quality Services, says it’s the state’s obligation.
“As citizens, we empowered and entrusted DHHS to step in and ensure that our most vulnerable citizens received proper care and support for success in their lives,” he says.
But Ryan, along with many other parents and advocates, says Maine’s Department of Health and Human Services will violate that obligation under a new proposal that changes how the state allocates services for individuals with disabilities.
DHHS wants to use what’s called the Supports Intensity Scale, or SIS. It assigns individuals a score to indicate the level of support they need.
The problem, says Ray Nagle of the Independence Association, is that SIS provides just a snapshot of an individual’s needs.
“Capturing a three-month period — that’s what you’re looking at, is a three-month period in isolation,” he says.
An individual’s history also matters, says Kim Humphrey of Auburn. She’s the mother of an adult son with autism. Humprey says it’s taken decades for her nonverbal son to achieve a balanced life in his community. He lives in a group home, delivers Meals on Wheels and takes excess food from Bates to a food pantry.
“In contrast, throughout his life, when supports are inadequate, he has demonstrated the capacity for rapid deterioration into an uncivilized state of being,” she says. “These include loss of communication skills and using the toilet.”
Humphrey says the proposal from DHHS abandons the current individualized planning in favor of a single assessment tool that will pigeonhole individuals into three tiers of service. And Nagle says most individuals will lose services under the proposed new model.
Nagle surveyed six other providers across the state to see how the new model would affect support for individuals with disabilities.
“Of the 296 individuals, 84 percent of them would have a decrease in their weekly support hours,” he says. “That weekly support reduction is about 35 hours a week.”
These anticipated reductions have prompted more than 250 Maine families and advocates to petition the Legislature to intervene. They’re asking lawmakers to revise the rules to require that SIS be used as a tool in conjunction with person-centered planning.
“I am contemplating it,” says Democratic Maine Sen. Anne Haskell, who sits on the Health and Human Services Committee, which will consider the petition. “I think there are serious concerns”
But Haskell says petitioning the Legislature to intervene is rare. And she’s trying to decide whether that will be the most effective way to address concerns around the proposed new rules.
“If we’re not able to make a change through a simple hearing, I want to know what authority the committee has to intervene in those rules, to make them different, to change them, to move the department in one direction or another,” she says.
DHHS declined to comment on the petition because it’s in the midst of rulemaking. But Commissioner Mary Mayhew stated previously that the new assessment will do a better job targeting the specific needs of individuals, and will provide more benefits for those who need them.