Maine Builds New System for Children and Adults with Disabilities

Enrollment for the lifetime exemption scheme could open in fall 2025.

MAINE, USA — Maine is creating a new system to ensure one of the state’s most vulnerable populations has access to a continuum of care.

The lifetime exemption is expected to clear backlogs and provide new programming for hundreds of children and adults with intellectual and developmental disabilities.

But some parents whose children have been waiting years for housing and support worry that their children won’t get the care they need.

The waiver program allows people with intellectual and developmental disabilities to receive services beginning at age 14 and helps them transition into adulthood without losing access to services provided by their schools.

“That’s been Lifespan’s vision since the beginning, to not create gaps, to keep people from falling off a cliff,” explained Betsy Hopkins, deputy director of the Maine Department of Health and Human Services’ Office of Aging and Disability Services (OADS).

Families of children with special needs must apply for a variety of waivers for home and community services based on their needs, which are paid for primarily with federal Medicaid funds.

The department plans to implement the waiver for youth ages 14 to 17 in fall 2025. Adults who receive housing, direct care and support services through Section 21 and 29 waiver programs could also be eligible a year later.

“They will have the option to review and switch services available to them and there will be an expansion of the lifetime exemption for those who need it,” Hopkins said.

Hopkins said the goal of the lifetime waiver system is to eliminate all waiting lists for waived services within five years.

There are more than 2,100 people on the waiting list for Section 21 services, the highest level of support for people who need individual supervision in housing.

“I’m worried the promises they made to my daughter may not be kept,” said Lisa Wessel, whose daughter Lydia has a seizure disorder and a rare genetic condition that affects her cognitive abilities. She has been waiting six years for a Section 21 placement in a group home.

“I’m worried that the promises I made to my daughter may not be kept,” Wessel said.

Wesel supports expanding and adding services, but questions how the new care system will come to fruition if barriers such as workforce shortages persist.

“We need more direct service providers. We need more case managers. And we need more housing. Accessible housing is almost nonexistent,” Wessel explained.

David Cowing’s son, Jay, has an intellectual disability and a mental illness. He’s lived in a group home in Bath, where he grew up, for the past 25 years. A Lifespan waiver allows people to continue living in group homes. But David, a retired special education teacher and administrator, worries he may have to care for Jay as an aging parent, given that dozens of group homes across the state have closed in recent years.

“As you can see, the decline of group homes across the state due to staffing shortages and financial difficulties is a real life or death issue,” David said.

“If we lose our group homes, there are no replacements, and housing costs are rising,” Wesel added.

The department connected families with federal and local housing authorities and hired housing counselors to help caregivers rent apartments where clients can receive care.

OADS staff are meeting with parents and advocates across the state to continue making changes to the waiver, and the public will be able to comment on the final plan later this summer. The waiver also requires approval from lawmakers and is expected to be presented to members of the Health and Human Services Committee in January of next year.

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