Families of people with intellectual and developmental disabilities are urging Maine’s Department of Health and Human Services to abandon a proposed rule change that they say would impinge on services for their loved ones.
The outcry comes after DHHS withdrew a different controversial proposal this spring that also would have affected services.
One of the biggest concerns families have is that the proposed rules would change the way providers are paid.
Cullen Ryan, who has a young adult son with disabilities, said the net effect will be less money for service agencies that are already underfunded. And that’s already had an impact on his son, he said, who has had to say goodbye to support workers over the years who have left for better paying jobs.
“Thirty-seven people have come and gone in my son’s life,” Ryan said. “They’ve been there long enough to get to know [him], and then they have abandoned him. And each time it’s left a gap, because it was hard to find a position. And my son has languished without support over and over again.”
Ray Nagel, executive director of the Independence Association, said his agency has a 40 percent turnover rate, and other agencies in the state have a 60 percent turnover rate. He attributes the problem to declining reimbursement rates.
“From 2007 until today, we effectively have had a 30 percent reduction in rates, and you can’t sustain staff with rate reductions,” said Nagel.
With providers already struggling to retain staff, Karen Humphrey of Auburn said other aspects of the proposed rules further jeopardize services for her adult, non-verbal son who has autism.
“The most troubling policy in the rule for me is that if DHHS deems that an agency cannot keep a member safe, they will give the agency 30 days notice, then stop payment to the agency,” Humphrey said.
But those same agencies aren’t allowed to discharge a client unless there’s a safe place to send them. That could force them to continue to provide care without reimbursement, and Humphrey worries that will prompt service providers to decline taking on more challenging clients in the first place.
These problems, families said, could have been avoided if DHHS had collaborated with them when making the rules. And that was their expectation after DHHS scrapped another controversial proposed rule change last spring.
“We’ve done quite a bit of communication,” said Ricker Hamilton, deputy commissioner of programs at DHHS.
He said the department held five meetings across the state this year, and also had separate meetings with providers and stakeholders. The proposed rules, Hamilton said, were written to comply with federal standards.
“We’re all about person-centered choice,” he said. “And I think what’s happening, my opinion in some of this, is that this is looking for business providers to have to change their business model.”
And now, he said, those providers are falsely alarming families. Hamilton said DHHS will accept written comments on the proposed rule changes through Oct. 29.
This article appears through a media partnership with Maine Public.