BIDDEFORD — On several occasions, both this year and last, this newspaper has published the moving accounts of Maine parents who fear for the safety of their adult children with intellectual and developmental disabilities in the care of Maine’s Department of Health and Human Services. Exacerbating their fears was a 2017 audit by the U.S. DHHS, severely criticizing Maine officials for failing to investigate the deaths of 133 individuals in state-funded facilities between January 2013 and June 2015. Nine deaths were described as “unexplained, suspicious or untimely.”
The auditor also found that neither the Maine DHHS nor community providers reported 34 percent of sexual assaults, suicidal acts and serious injuries that led to emergency room treatment of Medicaid beneficiaries with developmental disabilities.
That parents are frightened of our state social service system is shocking, although clearly their fear is neither unfounded nor unprecedented. The state of Maine has a well-documented history of abuse and neglect in its policies and practices toward persons with intellectual and developmental disabilities. As far back as the 19th century, we invented the problem of “feeble minds” and followed up through much of the 20th century with abusive solutions such as institutional segregation, rights restrictions and eugenic sterilizations.
Today, our treatment of citizens with intellectual and developmental disabilities swings between neglect and reform, still characterizing people’s differences as deficiencies and perpetuating societal devaluation. Unless we confront our past honestly, demand that it never be duplicated and implement consistent reforms, we will repeat our tragic mistakes and heighten parental fears and distrust.
Institutional abuses were graphically documented within Maine’s Pineland Center in the 1960s and ’70s. Less dramatically portrayed were deplorable conditions found in many community facilities for released Pineland residents, reportedly dumped into squalid housing and indentured work situations. In response, a 1975 class action lawsuit was filed on behalf of individuals in and outside of Pineland. A consent decree was negotiated in 1978, and revised in 1994. Both agreements aimed to improve community placements and enforce state compliance, using oversight groups such as the Consumer Advisory Board and the State Office of Advocacy. Initially effective, they later faltered because state officials reneged on promised reforms, and the public was largely silent.
In 2010, Attorney General Janet Mills requested that the 1994 consent decree be terminated. Plaintiffs objected, but federal Judge George Singal agreed. He argued that Maine officials would “do the right thing and avoid backsliding,” thanks to existing regulations, statutes, advocacy and oversight. Backsliding commenced in 2011 as the newly elected governor, Paul LePage, abolished the State Office of Advocacy.
This spring, in response to the shocking federal audit of the Maine DHHS, legislators passed a bill requiring the state attorney general to examine and refer all deaths of and serious injury to persons with intellectual and developmental disabilities to the state’s Elder Death Analysis Review Team. In July, Gov. LePage vetoed that bill; a week later, that veto was sustained.
Without strong regulatory pressure, state officials tend to repeat deficient practices of the past and show little regard for existing oversight bodies such as DHHS’ Adult Protective Services and the Maine Developmental Services Oversight Advisory Board (formerly the Consumer Advisory Board). Adult Protective Services is charged with overseeing part of DHHS and is hardly an independent oversight mechanism. The Oversight Advisory Board was designed to be more independent, but apparently lacks the authority and resources to ensure DHHS’ compliance.
Oversight will continue to flounder unless Maine citizens insist on a strong, independent oversight body with full information-gathering authority and adequate staff and funding to ensure proper protections for individuals considered most vulnerable.
Of course, if we focus only on people’s vulnerability and protection, we risk perpetuating an historical image of deficiency and failing to realize a more far-reaching vision of societal change. Pioneering social reformer Burton Blatt argued that we truly prevent abuse by telling stories about marginalized groups that include accounts of human educability and promise, and by tangibly supporting people as active community participants.
Formal and informal supports offered by human service agencies and typical citizens have enabled persons with intellectual and developmental disabilities to escape isolated circumstances and successfully live, work, learn, volunteer, worship and recreate in society.
Much more of these initiatives need to be made in Maine and elsewhere. These are the stories that can effectively combat devaluation and abuse and allay parental fears. These are the stories that we should insist be produced through our state services.
Send questions/comments to the editors.
