During this winter’s protracted battle over expanding Medicaid coverage to more than 70,000 low-income Maine adults, the expansion’s opponents unnecessarily dragged a population of Maine residents with developmental disabilities into the debate.
An expansion of Medicaid under the Affordable Care Act to low-income parents and adults without children — with newly eligible recipients’ costs funded almost entirely by the federal government — had little connection to the plight of adults with intellectual disabilities and autism on state waitlists for support services.
Yet the claim that expanding Medicaid would crowd out funding for those with disabilities on state waitlists for services in their homes and communities gained traction. In the course of debate, the focus on a population of Maine adults with specialized needs obscured so much critical information about the state system that serves them.
Some 2,945 Maine adults with intellectual disabilities and autism receive Medicaid-funded services from the state — apart from medical care — that help them live more independent lives in their communities and, when possible, in their homes. Waitlists for those same services number almost 1,400 more.
The fact that hundreds of Maine adults with disabilities can’t gain access to services they need is certainly an imperative to take action to change the situation. Yet additional funding is not the entire solution. In fact, on its own, more funding would be an entirely insufficient solution.
Maine was among the first states in the nation decades ago to stop housing adults with intellectual disabilities in state-run institutions. That means it was among the first states to develop a system to serve these adults in their communities.
In the decades since, that community-based system has changed little. Today, Maine spends among the highest amounts per person in the nation (81 percent more than the national average, according to AARP) to provide home- and community-based support services to adults with intellectual disabilities.
Yet those services aren’t always well targeted to those who actually need them. Maine’s system, for example, relies heavily on group homes staffed 24-7 by direct care workers. Some in those group homes need the 24-7 care and more; others might be able to do with less. An analysis of Maine’s system for serving adults with intellectual disabilities last year found there’s little correlation between what Maine spends on support services and clients’ level of need.
While the discussion about this support system has framed the issue as one of funding, there are important reforms that need to happen to distribute existing funds more equitably and likely serve more people who require services.
Fortunately, DHHS’ Office of Aging and Disability Services is working to make those important changes. The office is working to make an assessment, called the Supports Intensity Scale, an integral part of the service system, so the agency can more precisely determine what services a client needs and provide him or her with those appropriate services. That’s something that service systems in many states — not just Maine — have traditionally not done well.
This is critical work, and little of it figured into this winter’s debate that brought Maine adults with intellectual disabilities into the fold. It’s critical because Maine needs not only a system that delivers high-quality support for adults with intellectual disabilities and autism, it needs a system that is sustainable because more and more people are likely to require its services.
Between 2000 and 2012, the number of people in Maine with autism grew 737 percent, according to state figures. In 2012, the state recorded 5,381 people statewide with autism spectrum disorder, up from 643 in 2000. In 2009, a quarter of those with autism were 21 and older. That figure had risen to 40 percent by 2012.
As those with autism grow older, they lose the support they received through the public school system. The adult system needs to pick up where public schools left — with services that allow adults with autism to work, participate in community life and live as independently as possible.
It’s not just funding that needs to be available to serve them. They need a support system that’s effective and sustainable.