AUGUSTA, Maine — It's a huge undertaking—Maine is currently building a new system for children and adults with developmental and intellectual disabilities.
The "Lifespan Waiver" would provide more comprehensive services at age 14 to help them transition into adulthood.
The program is expected to clear years-long waitlists and provide more opportunities to live independently. However, some families fear a new system will eventually cause much-needed services, like group homes, to disappear.
"Her housemates are her friends; they have been her friends since high school," Debbie Dionne explained about her daughter Kate.
Kate lives in a group home in Brunswick. She has cerebral palsy and an intellectual disability following a traumatic birth 43 years ago. Staff help her live independently, which would be difficult for Debbie and her husband to do for their daughter. Another worry, 75 group homes have closed their doors in Maine amid low Medicaid reimbursement rates.
"If she were to lose this housing, I am 71 and we are aging; my home is not accessible. I do worry," Debbie said with fear in her voice.
Parents have been raising many concerns since the Maine Department of Health and Human Services announced a new plan last spring, revamping the state's services system for children and adults with intellectual and developmental disabilities. Families of special needs children must apply for different waivers for home and community services based on their needs, primarily paid for by federal Medicaid dollars. The Lifespan Waiver would enroll children as young as 14, eliminating waivers and wait-for lists across their lifespan.
"Our goal around Lifespan is that a person can stay in one wavier and not have to switch and get the services they need as they age," Betsy Hopkins, the associate director of the DHHS Office of Aging and Disability Services, said.
Hopkins said under Lifespan, people can continue to live in group homes and receive services under Section 21 and Section 29.
DHHS officials, who have been gathering comments from the public over the summer, are currently holding listening sessions with parents and providers. Lucinda Turcotte is an adult case manager with Brighter Heights Maine, which provides several services, including case management for special children and adults. Severe shortages of skilled staff to work with this vulnerable population are still a big concern, as is funding.
"We are being told we are developing another waiver that will not have a waitlist. I am not confident that is a guarantee. We all know the funding has to go through the Legislature," Turcotte said.
A current rate study could improve pay for direct support workers and agencies. Lifespan still needs approval from the feds and will undergo the rulemaking process in the Legislature next spring. If passed, enrollment could begin in January 2025.
DHHS is holding a Lifespan Waiver informational tour throughout the state, with sessions planned in Caribou, Bangor, Lewiston, and South Portland next week. People can also register for Zoom sessions.