A workforce crisis threatens to close group homes and cut other Medicaid services this summer for thousands of adults with intellectual disabilities – a looming problem caused when Maine lawmakers failed to extend the legislative session.

When lawmakers adjourned on May 2, they left in limbo more than 4,000 adults with autism or other intellectual disabilities who receive Medicaid-funded services, such as group home placements, day programs, in-home care and supportive work environments.

Nonprofit agencies that provide the services across the state say they are making crisis contingency plans to close many group homes or cut other services, such as day programs or in-home care.

Hundreds of adults with intellectual disabilities and advocates on their behalf descended on the State House on May 2 to lobby for an increase in reimbursement rates under MaineCare, only to see the session end without their issues being addressed. Lidia Woofenden, 21, who has a rare neurological disorder, protested on that day.

“They (lawmakers) weren’t paying attention to what we had to say to them, and they walked away from us,” Woofenden said Friday in an interview at Spindleworks, a day program in Brunswick where she was making a burlap cape with floral designs. “I was pretty annoyed. It wasn’t just, it wasn’t nice and it wasn’t fair.”

HUNDREDS RELY ON SERVICES

Most at risk are group homes, which have about 1,800 residents statewide and a waiting list of about 1,600, according to a federal report and a trade group that represents the nonprofits.

A group of artists and a mentor are hard at work at Spindleworks, an art studio for people with intellectual disabilities. The studio is an example of a service whose funding has suffered from the Legislature’s adjournment that left important business unfinished. Clockwise from left: Grace McKenna, artist mentor Julianne Carle, Lidia Woofenden, McKensy Brown and Barbara Welborn. Staff photo by Ben McCanna

The MaineCare reimbursement rate that lawmakers had proposed to increase in 2018 would instead be cut on July 1, meaning that agencies would be reimbursed for direct care workers at the equivalent of $9.17 per hour, less than minimum wage.

Lawmakers had approved the reimbursement rate bill in 2017 and partially funded it for one year, providing money to allow the nonprofit agencies to pay direct care workers about $10 an hour. The bill was carried over to 2018, and this spring lawmakers were set to come up with a permanent funding solution that would potentially set the rates higher.

MaineCare is the state’s version of Medicaid, which is funded with a blend of state and federal dollars, but states have wide latitude to run the programs, including setting reimbursement rates. Group homes are funded under Section 21 of the Medicaid program, while services such as in-home support and day programs are funded by Section 29. Both sections would see reimbursement rates fall if nothing is done.

Last year’s temporary funding was a Band-Aid approach, say advocates for the nonprofits, and lawmakers were scheduled to come back this year and devise a permanent solution that under one proposal would reimburse workers about $11 an hour, and index future increases to inflation.

Despite attracting bipartisan support, however, the bill was caught up in an end-of-year political fight, when House Republicans refused to provide the votes to extend the session, in part over a dispute with Democrats and moderate Republicans over funding voter-approved Medicaid expansion.

Maine Department of Health and Human Services officials were opposed to the bill – arguing that a more comprehensive rate study was needed – but Republicans and Democrats said they supported it. While Republican Gov. Paul LePage had not taken an official stand on funding, he highlighted the plight of people with intellectual disabilities during his State of the State speech. The bill passed the 2017 session without a roll-call vote, and was carried over to the 2018 short session.

It’s now one of a series of issues left undone as the legislative session closed, including school funding and money to help the uninsured in the opioid crisis.

Angela Alderete, 55, knits at Spindleworks in Brunswick last week. Brian Braley, the associate director of the organization that operates the arts and crafts center, said that having quality programs for adults with intellectual disabilities is a “civil rights issue.” Staff photo by Ben McCanna

Rep. Erin Herbig, D-Belfast and sponsor of the reimbursement bill, said that she believes the measure would be funded if it could ever get off the legislative “table,” but the Legislature won’t be in session until 2019 unless LePage or a coalition of legislative leaders call lawmakers back.

“It’s a pretty awful position to be in,” Herbig said. “It is my hope that we will come back.”

‘MANY GROUP HOMES WILL CLOSE’

Meanwhile, the reimbursement rate is set to revert to $9.17 per hour on July 1, leaving many nonprofits scrambling, said Lydia Dawson, executive director of the Maine Association for Community Service Providers, a trade group that represents operators of group homes.

“We’re holding out one last shred of hope, but every day that goes by the hope dwindles,” Dawson said. “Everyone is making contingency plans, and many group homes will close.”

Dawson said with a waiting list for group homes at about 1,600, most of the people living in group homes have nowhere acceptable to live if the home were to close. Either they have nowhere to go, or would end up in a living situation where abuse and neglect were likely.

“At this point, if you can live at home, you’re living at home. These are already people in acute situations. A lot of people living in group homes don’t have any other options, and so we will see them homeless, in emergency departments and jails,” Dawson said.

The system serves about 1,800 adults with intellectual disabilities who live in group homes, but Maine’s low unemployment rate, insufficient reimbursement rate and minimum wage increases are making it impossible to attract and retain workers, Dawson said. Jobs in group homes are especially challenging, and are competing with other minimum wage jobs that are far less stressful, she said.

McKensy Brown descends the stairs at Spindleworks. The building is adorned with completed works that are for sale to the public, with 75 percent of proceeds going to the artist. One of Brown’s paintings is on the wall second from right. Staff photo by Ben McCanna

Voters approved a minimum wage increase in November 2016, and as of January the rate is now $10 per hour. The rate is set to increase to $12 per hour by 2020.

Dawson said it’s unrealistic to expect financially strapped nonprofits to be able to afford to pay their employees $10 an hour when they are being reimbursed at $9.17 per hour. The goal of the $26 million legislation is to get the reimbursement rate to consistently be about $1 higher per hour than the minimum wage so that nonprofits can attract and retain employees. A decade ago, direct care workers were earning about $3 an hour above minimum wage.

Ray Nagel, executive director of Brunswick-based Independence Association, said if the lower rates stand, they will have to close two of their 14 group homes immediately.

“It really is bad. The group homes are really, really hurting,” Nagel said.

SPINDLEWORKS ‘LIKE HOME FOR MANY’

Woofenden said if it weren’t for Spindleworks and two other programs she attends, including a job where she helps out in the kitchen at a nursing home, she wouldn’t get to see her friends.

Lisa Wesel, 53, who is Woofenden’s mother, said her daughter’s condition means that she has the judgment of a 10-year-old and would have difficulty completing basic daily living tasks without assistance. Wesel said her daughter has been on the waiting list for Section 21 group home services for many years, and if she and her husband, Todd Woofenden, were to die, she doesn’t know how her daughter would survive.

Wesel said something will need to be done about the long waiting list for group homes, even if the reimbursement issue is solved. The waiting list has grown tenfold in the last decade.

“You would like to think that your child will survive when you die. Will my daughter be able to survive when we die? Right now the answer is ‘no,’ ” said Wesel, of Bowdoinham.

Debbie Dionne, 66, of Topsham said her 38-year-old daughter lives in a group home, and she lives in fear that the home will close. Her daughter, Kate Riordan, has cerebral palsy, needs a walker to move around and is nonverbal. Having her back home again when they are approaching their senior years would be extremely difficult, Dionne said.

“I don’t know what we would do,” Dionne said. “These supports are so crucial.”

At Spindleworks, clients can choose from an array of arts and crafts, including painting, building, pottery, sculpture and designing and making clothes. Spindleworks’ rooms and hallways are adorned with numerous works of art done by the clients. Much of the artwork is sold, and the clients earn money from each sale.

Grace McKenna takes her watercolor paintings to a drying rack before closing time at Spindleworks. Staff photo by Ben McCanna

“This is like home for many people,” said Brian Braley, associate director at the Independence Association, which operates Spindleworks. Braley said while they receive funding from a variety of sources, without a reimbursement rate increase, they will have difficulty attracting qualified employees. He said having quality programs for adults with intellectual disabilities is a “civil rights issue.”

It’s a similar story at the Morrison Center in Scarborough, which operates 10-15 group homes.

Mark Ryder, executive director at the Morrison Center, said the organization has no plans to close group homes, but the rate reductions will just make operating more difficult.

“We are definitely going to be financially stressed. We already struggle to find staffing, to fill shifts,” he said.

Lidia Woofenden said if the lawmakers only listened to the facts, they would help her and her friends have a better life.

“I hope they get their act together,” she said.