A group representing nonprofits that deliver services to adults with intellectual disabilities is proposing legislation that they say would shorten record-high waiting lists by raising state reimbursement rates paid to the nonprofits.

By increasing reimbursement rates, nonprofit leaders said they could afford to pay workers who staff the group homes a higher wage, which would in turn make it easier to find and hire qualified candidates. Higher rates also would make existing group homes more financially stable and able to expand, thus reducing the waiting lists, the leaders said.

Waiting lists for the services – which include group homes, in-home help and community programs – have surged, increasing from 111 people on the lists in 2008 to 1,264 in 2016, a period during which reimbursement rates have been slashed.

One in four to five adults with intellectual disabilities, including those with autism, Down syndrome and brain damage, are on a waiting list for services, with some expecting to wait a year or longer, advocates say.

Reimbursement cutbacks for the nonprofits began in 2008 during the Baldacci administration and have continued under Gov. Paul LePage. A proposed funding formula change by the LePage administration that’s currently being considered would cut additional funding and leave the agencies on the cusp of closing many group homes, nonprofit leaders said.

The disintegration of the safety net for developmentally challenged adults has occurred since the late 2000s, more than a decade after the Pineland Center institution in New Gloucester closed in 1996.


The bill that would go before the Legislature in January would hike the reimbursement rate paid to the nonprofits for providing services from the current $22.43 per hour to $29.58 per hour, representing what the 2007 rate would have been had it kept up with inflation, the Maine Association for Community Service Providers said Monday. A separate bill would prevent the funding formula from being altered.

Todd Goodwin, president of the association that represents group homes and agencies that provide in-home and community support services for developmentally challenged adults, said the legislation is needed to reduce the wait lists that have ballooned over the past several years. The proposal would cost state taxpayers an estimated $27 million per year, with an additional $51 million in federal tax money. MaineCare, the state’s name for Medicaid, is funded with a blend of state and federal tax dollars.

Group homes are so financially strapped that they can only afford to pay workers about $10 an hour, Goodwin said. The jobs are a combination of low pay and demanding work, he said, and agencies are having a difficult time finding qualified employees willing to take the jobs. Those who do work as aides often leave within a year.

With an increase, starting wages would probably rise to about $12-$14 per hour, helping the agencies attract and retain employees, Goodwin said.

Goodwin, also the CEO of Community Partners, a Biddeford nonprofit that operates group homes, said his agency has had to turn down clients because it can’t staff the group homes, and that many other nonprofit agencies are facing the same problems.

Samantha Edwards, spokeswoman for the Department of Health and Human Services, did not respond to a request for comment Monday, but on Friday she said that the Legislature’s failure to fund a $46 million proposal by the LePage administration to reduce the wait lists is the reason there is a problem.


“Wait lists exist because there are not enough funded slots,” Edwards said, referring to the total number of people served, “not because the rate paid to providers is inadequate as they are apparently claiming. As additional slots have been funded, providers have continued to serve new individuals.”

But Goodwin said increasing the number of people served doesn’t help if reimbursement rates remain low – and are threatened to be cut further – because the nonprofits can’t afford to provide the services needed.

“Funding the wait lists are effectively a moot point when the rates are so low. The rates are preventing us from taking on clients,” Goodwin said.

Stephen Murphy, an emeritus professor at the University of Southern Maine who wrote a 2011 book about Pineland, said that when the facility closed, the hope was that developmentally challenged adults would receive good care in the community and be better integrated into community life. But he said that hasn’t happened, and instead the state is in danger of backsliding into a system where people are warehoused in group homes, rather than providing services to help improve their lives.

“There’s no recognition of their value to society by the government, which allows the government to continue to erode services and the supports that were given them,” Murphy said.

Rep. Drew Gattine, a Westbrook Democrat who co-chairs the Legislature’s Health and Human Services Committee, agreed that reimbursement rates need to be increased, although he’s not sure they need to rise by the amount the nonprofits are proposing.


Gattine said putting money into the wait lists without increasing reimbursement rates, as the LePage administration is proposing, is “throwing money into a broken system.”

About 4,800 adults with intellectual disabilities qualify for assistance under sections 21 and 29 of MaineCare, the DHHS says. Section 21, which has the 1,264-person wait list, covers comprehensive services, including 24-hour care, group homes and often 40 hours per week of day programs. Section 29 offers far fewer services – usually about 10-20 hours per week of in-home or community help – but has no waiting list.

Leslie Sullivan of Freeport, grandmother of 18-year-old Ryan Dufour, who is autistic and on a waiting list for Section 21 services, said increasing the rates would be a “good start,” but it’s difficult to predict how many people would come off the wait list.

Kim Humphrey of Auburn, who started Community Connect, a grass-roots resource for families who have adults with intellectual disabilities, said she’s seen with her adult autistic son how quickly backsliding can occur, and it’s hard to see so many on a waiting list and without professional help.

“They’re putting these people’s lives in jeopardy. It’s just not fair,” she said.


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