On the first day of summer in 1995, our son was born with Down syndrome. As our family and friends learned the news, the overwhelming response was concern that he would have an unhappy life. When we told our son about this many years later, he laughed out loud. He enjoys telling this story, and reassuring his audience that his life is very happy.
Kelsey Dunn, left, a residential services manager for a group home in Topsham, helps Kate Riordan, who has cerebral palsy, communicate with an iPad in 2016. Ben McCanna/Staff Photographer
Our concerns at the time of his birth were not unfounded. In 1995, the Americans with Disabilities Act was just five years old. Maine’s movement to deinstitutionalize care for people with disabilities was underway, driven in part by a consent decree, but the state was still in the process of building a new system of home- and community-based services. The last resident from Pineland Center moved into her new home as we celebrated our son’s first birthday. It would be three more years before the U.S. Supreme Court delivered the decision, in Olmstead v. L.C., that required all public entities to provide community-based services because “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.”
Our son and his peers were the first generation to fully benefit from these state and federal policy changes, as home- and community-based services expanded their horizons. They participated in sports and social activities with help from behavioral health professionals, learned how to navigate safely in the community, developed essential work skills and built lifelong friendships.
Now in their late 20s and 30s, many of them have graduated from college, have jobs, volunteer, own businesses and live in their own apartments with assistance from home- and community-based services. Their successes are inspiring, but they are not accidental: They are the direct result of three decades of policies that prioritized home- and community-based services as strategic investments to build their full participation in our communities. They were not the only beneficiaries of this investment; many of their behavioral health professionals have built successful careers in education and health care.
Home- and community-based services are once again the subject of many policy conversations here in Maine and in Washington. Despite Maine’s role as a national leader in the early development of home- and community-based services for people with disabilities, the waitlists are long and pay rates are low for the workers who provide these services. As of January, 2,111 people with disabilities were waiting for various home and community-based services, with 608 of these qualified individuals receiving no services at all. The Health and Human Services Committee is reviewing legislation that seeks to eliminate these waitlists. The Maine Legislature is also reviewing proposals this session to address chronically low pay for providers of home- and community-based services.
In Washington, the new infrastructure package known as the American Jobs Plan includes $400 billion to expand access to home- and community-based services for older people and people who have disabilities, and to improve pay and benefits for all care workers. In a White House news release, the Biden administration makes the case for home- and community-based services as “the infrastructure of our care economy,” outlining the goals of creating new jobs and providing services for individuals “who otherwise would need to wait as many as five years to get the services they badly need.”
As these policies are reviewed, questions will likely arise about including home- and community-based services in a federal infrastructure package, and ideological debates about limits and priorities for investment of public funds. Wherever these conversations lead, families with loved ones who have disabilities and caregiving needs related to aging understand that these services are as essential as our roads and bridges. Home- and community-based services provide the scaffolding our loved ones need to complete activities of daily living, and to participate fully as members of our communities. Home- and community-based services have demonstrated a high rate of return for individuals and employers, and deserve additional investment by our state and federal leaders as part of the critical infrastructure in our communities.
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