MAINE, USA — Maine is building a new system to ensure that one of the state's most vulnerable populations receives consistent care.
The Lifespan Waiver is expected to clear a backlog of hundreds of children and adults with intellectual and developmental disabilities and provide new programs.
But some parents whose children have spent years waiting for housing and support worry they won't get the care they need.
The waiver program would start providing services to people with intellectual and developmental disabilities at age 14 to help them move from school-provided services into adulthood without losing that care.
"That has been the vision of Lifespan since day one: not to have gaps, not to have people fall off the cliff," Betsy Hopkins, the associate director of the Maine Department of Health and Human Services Office of Aging and Disability Services (OADS), explained.
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 agency plans to roll out the waiver for youth 14 to 17 in the fall of 2025. Adults receiving housing, direct care, and support services through Section 21 and 29 waiver programs could also be eligible a year later.
"There could be an option for them to switch and look at the services available, and the Lifespan Waiver for those who need it would expand," Hopkins said.
Hopkins said the goal of the Lifespan Waiver is to clear all the waitlists for waiver-funded services in five years.
More than 2,100 people are on a waitlist for Section 21 services, the highest level of support for people who need one-on-one supervision in residential housing.
"I am worried about promises being made to my daughter that may not be kept," Lisa Wesel said. Her daughter, Lidia, has a seizure disorder and a rare genetic condition that has impacted her cognitive abilities. She has spent six years waiting for placement in a group home under Section 21.
"I am worried about promises being made to my daughter that may not be kept," Wesel said.
While Wesel supports expanding and adding new services, she questions how a new care system will become a reality if barriers like workforce shortages persist.
"There needs to be more direct service providers, there needs to be more case managers, and there needs to be more housing, accessible housing barely exists," Wesel explained.
David Cowing's son, Jay, has an intellectual disability and mental health challenges. He has lived in a group home in Bath for 25 years, where he grew up. Under the Lifespan Waiver, people can stay in their group homes. However, David, a retired special education teacher and administrator, worries about possibly having to care for Jay as an aging parent, especially in light of the closing of dozens of group homes throughout the state over the past several years.
"As you see the attrition of group homes throughout the state due to lack of staffing and financial challenges could be death by a thousand cuts," David said.
"If they lose a group home they can't replace them, the cost of housing has gone up so much," Wesel added.
The agency has hired a housing counselor to connect families with federal and local housing authorities and help caregivers rent apartments where clients could receive care.
OADS officials continue meeting with parents and advocates throughout the state and making changes to the waiver. The public will get to comment on the final plan later this summer. The waiver will also need the approval of lawmakers, and it's expected to be presented before members of the Health and Human Services Committee next January.