In the Legislature, there are often issues that unite us, regardless of party affiliation, because the cause demands it. The worsening crisis in Maine’s intellectual and developmental disability services system is one of those issues. It’s why we, a Democrat from Belfast and a Republican from Hancock, have come together in support of emergency legislation to address the root causes.
Our bills — L.D. 967 and L.D. 323 — would ensure continued access to residential facilities and clear the waiting list for those individuals with intellectual and developmental disabilities.
Traditionally, people with intellectual and developmental disabilities have been segregated and institutionalized. While we have come far since the days of Pineland Hospital in establishing integrated services in the community, we have not kept pace with the high incidence of autism and developmental disabilities. Today, nearly one in 66 students is diagnosed with autism, and while many have the potential to live independently, many of them will require lifelong care.
Our robust education system is well tooled to handle the needs of these young individuals, but unfortunately, our residential adult facilities are not prepared to address this onslaught. While funding has increased to address the needs of the neediest, MaineCare reimbursement rates for these services continue to lag, crippling the system and providing little hope for the hundreds of Mainers still on the waitlist. We have added more than 1,000 young adults to the waitlist in the last six years, despite spending an additional $20 million to house the most needy.
People with intellectual and developmental disabilities rely on direct support professionals to provide the services they need every day to live safely in their communities. This includes helping people do everything from shopping and cooking a meal to using the bathroom and properly maintaining feeding tubes and colostomies. Reimbursement rates for these professionals are just pennies above minimum wage. This low wage leads to severe staffing shortages across the state as this workforce leaves for less stressful and more lucrative work in entry-level retail positions. Agencies are unable to refill these positions, leaving them unable to deliver services to people who need them.
It wasn’t always like this. For the last 30 years, Maine led the nation in protecting and delivering integrated community support services for people with intellectual and developmental disabilities. Unfortunately, because reimbursement rates have been slashed as much as 30 percent since 2007, that’s no longer true.
We are particularly concerned about those individuals on the waitlist whose parents are over age 60 and struggle to provide the resources required to care for their adult children, as well as those whose parents have been depleting their financial resources, face health care issues of their own, and wonder who will take care of their children when they are gone. We have hundreds of these individuals who are eligible for services, but they remain on a growing waitlist.
This crisis is more than a public policy concern. Both of us come from communities that have seen group home and provider closures that uproot the people who they supported. These are our neighbors, friends and family. To see them ripped from their homes, and their success threatened, has hurt the very fabric of our state.
Without immediate intervention, which our respective bills provide, our system of care will collapse. L.D. 967 prevents that by restoring rates to 2007 levels with adjustments for inflation. This will empower service providers to offer a wage that allows them to compete for and retain the professionals on whom the system depends. L.D. 323 fully funds the waitlist so that every Mainer requiring services receives them.
Passing and funding both bills is the right thing to do. Maine has a moral and legal obligation to care for our most vulnerable residents, and our bills will ensure we meet that obligation. We urge our colleagues to join us in support of both bills and thank those who already have.
Erin Herbig, a Democrat from Belfast, is the House majority leader. Rep. Richard Malaby, a Republican from Hancock, is a member of the Health and Human Services Committee.
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