AUGUSTA — Advocates for adults with intellectual and developmental disabilities pressed Maine lawmakers to approve more than $60 million in annual funding to eliminate a nearly 2,000-deep waiting list for Medicaid services.

The funding bill, sponsored by Sen. Rebecca Millett, D-Cape Elizabeth, is being proposed in tandem with another measure that would boost Medicaid reimbursement rates in an effort to ease a workforce shortage at group homes and for other adult services. Those services could include in-home supports, day programs, physical therapy, occupational therapy, learning job skills and a number of other programs.

Millett, parents and service providers held a news conference to call attention to the legislation at the Maine Welcome Center on Monday, just before a Health and Human Services Committee’s public hearing on Millett’s bill.

Parents of adult children with disabilities said they’ve seen their children regress once they turn 21 and no longer receive a comprehensive array of services – many of them provided at school –  available to people through age 20.

“The state has given up on her,” said Lisa Wesel, referring to service cutbacks for her daughter, Lidia Woofenden, 23.

The “services cliff” once students turn 21 harms many families, advocates said. Some families wait years to get off waiting lists.

The bulk of the waitlist is for Section 21 services for adults with the most acute needs, which include living in group homes or extensive in-home supports.

The waitlist for Section 21 has grown from about 110 in 2008 to 1,639 in 2019, and many stay on the list for years. Often, parents quit or cut back on working to take care of their adult children.

Maine Department of Health and Human Services officials have committed to eliminating a separate waitlist, Section 29, which was at 323 people in October. Section 29 services do not include group homes and are far less comprehensive, but include day programs and in-home help, often about 15 hours per week.

Paul Saucier, director of the state’s Office of Aging and Disability Services, testified Monday that while DHHS is neutral on Millett’s bill, a major overhaul of the system is being planned, with more details to be unveiled later. Saucier said a new system needs to be more flexible to address the needs of families.

“This bill simply expands the system we have today rather than reforming it,” Saucier said.

About 3,100 Mainers live in group homes for the intellectually disabled through the Medicaid program under Section 21, and an additional 2,200 people get in-home help through Section 29, according to state statistics.

A separate bill would require that Medicaid reimbursement rates be equivalent to paying direct care workers 125 percent of whatever the current minimum wage is. With a current minimum wage of $12 per hour, pay would be at least $15 per hour if the bill is approved.

Wesel, of Bowdoinham, said her daughter has regressed since losing eligibility for children’s services two years ago. Woofenden is on a waiting list for adults with more severe intellectual or developmental disabilities. She has a rare genetic disorder that causes intellectual disabilities and seizures.

Wesel said her daughter made great strides while receiving services in school, such as learning to ride a bicycle and to read chapter books.

“I’m left wondering what all that was for, because she is languishing on the waitlist for comprehensive services,” Wesel said. Woofenden does receive some Medicaid services and attends day programs, but it’s far less than what she needs, Wesel said.

As services dropped off, Lidia has become more childlike, Wesel said, abandoning reading books for “baby shows and baby talk.”

“I’m watching my daughter age backwards,” she said.

Alan Cobo-Lewis of Orono said his autistic son, Benjamin, 19, faces losing the extensive services he now receives in about 18 months.

“We are facing the services cliff he is about to be shoved off of,” Cobo-Lewis said.

Cobo-Lewis said Benjamin currently receives more than 40 hours of services, both at school and home. The services focus on communication, job skills and social skills, such as being part of a sports team. His son is non-verbal, but can use a tablet to communicate. But learning those skills has taken a lot of time and effort, he said.

Cobo-Lewis said if his son does not get Section 21 services when he turns 21, the hours of assistance will be cut substantially. He fears his son’s progress will backslide.

“The anxiety about what is going to happen just grows and grows and grows,” Cobo-Lewis said.

Dixie Redmond, of Hampden, said her adult son, Alex, who has autism and other disabilities, has regressed since he lost his childhood services.

“He stopped talking,” Redmond said. “In moments when he finally could speak, he asked, ‘What happened to my good life?’ ”

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