As a legislator, it’s my constant goal to pass good policy that helps Maine families. As a parent, I know what it means to want your children to be taken care of. I know what it means to want to give them every opportunity and resource to live healthy, happy lives. And I know that all parents face unique challenges providing for their kids.
But for many families across Maine, those challenges are more dire. For many families dealing with disabilities, the resources and help they need are simply out of reach. Our state has programs to help Mainers dealing with physical, mental and developmental disabilities, but our current system is letting too many people fall through the cracks.
Across the state, dedicated educators are working hard to make sure their students are ready to transition out of school into their adult lives. Unfortunately, that transition is often derailed by long delays in receiving adult services. Too many people languish on waitlists, unable to access the services, resources and help they qualify for, have a right to, and should be receiving.
It’s past time for us to do something about it.
This session, I introduced LD 1984, which aims to eliminate waitlists for Maine adults with disabilities. It’s an ambitious bill, but lawmakers owe it to Maine families to take on this effort. For too long, legislators have only picked away at the edges of the problem.
During a public hearing for this bill, lawmakers heard stirring testimony from families and friends who are just looking to support their loved ones. The consensus was clear: Providing services to vulnerable Mainers is the right thing to do; it’s the obvious thing to do.
“Before knowing Brandon, l had no idea what MaineCare was … or would even comprehend that people with disabilities, no matter what the diagnosis, had to struggle for services that, to me, was just common sense,” Randy Hillman told lawmakers. “However, there are waiting lists and these waiting lists have a profound ripple effect on the ‘unabled,’ as Brandon puts it, as well as the caregivers and society.”
Zivi Osher, another Maine resident, talked about the struggles his friend is facing: “In less than two years Benny will turn 21 and he will age out of the services he has now and he will go onto a waitlist. He will wake up one day and all of a sudden he won’t have the services he needs. Benny will join the almost 2000 others waiting, [while] their families struggle to provide the secure life that they used to have. People with special needs don’t stop having those needs after they enter adulthood. They grow older, but they still have special needs, and we have a duty to provide for those needs.”
Dixie Redmond, a mother from Hampden, shared what happened when her son, Alex, suddenly lost access to services after graduating from high school: “Our son regressed. He stopped talking. He communicated his needs through behavior we hadn’t seen in many years. In moments when he finally could speak, he asked, ‘What happened to my good life?’”
Friends and families should not need to be full-time experts about complicated service networks just to make sure their loved one gets the help they deserve. They should not need to drive all the way to Augusta, year after year, to act as advocates.
But the reality is, waitlists for disability services just keep growing — they’ve been growing steadily since 2008. Today, nearly 2,000 children and adults are waiting for the help they need. Of those 2,000 people, nearly 700 are receiving no community-based services at all. We owe those people and their families a real solution.
When Mainers with disabilities have to wait for needed services, their whole family can be affected by it. Young people who thrived with the support systems offered in school can backslide once they graduate and lose access to that support. When home- or community-based aid isn’t available, parents often face the hard decision of leaving their job to stay home and care for their children.
Ten states have been able to completely eliminate their waitlists, including Massachusetts, Missouri, Minnesota, Delaware and Washington. Maine needs to step up to the plate, as these states have, to take care of our families.
Rebecca Millett of Cape Elizabeth represents District 29 in the Maine Senate. She is a member of the Education and Cultural Affairs Committee.