BIDDEFORD — That the state of Maine is reducing funding and services for its citizens with intellectual and developmental disabilities and backsliding on its commitments to this group and their families should not be surprising. Despite its claims and promises, Maine has long resisted building a stable system of community resources, a commitment requiring both improved state services and a more involved public.

In order to relieve massive overcrowding in the late 1950s, Pineland officials began releasing residents in large numbers to lives of servitude in substandard, overcrowded boarding homes and oppressive work and living situations. A 1975 class action lawsuit and ensuing consent decrees targeted both the deplorable conditions within Pineland itself and the “community” placements to which residents were assigned. Promising families “equal or better” community settings than their children experienced at Pineland, state officials proceeded to resist, stall and extend consent agreement deadlines for over 30 years, complying only when threatened with more legal action. Not until 2010 was Maine finally released from federal court oversight of its community consent agreement. Six years later, here we are again.

Now, once more, the state is accused of reneging on its promises after slashing provider reimbursements and services, exacerbating waiting lists and staff turnover, and promoting larger group homes. While Maine officials claim they are actually improving programs, serving more people and holding down unwarranted costs, they have failed to explain how their funding and services models are designed to meet the demands of persons with intellectual and developmental disabilities and their families.

In 2015 the National Council on Disability addressed this question succinctly: “The Americans With Disabilities Act, the 1999 Supreme Court decision in Olmstead v. L.C., and recent court rulings, support the undeniable right of people with intellectual and developmental disabilities to live with friends and families, to be employed in typical jobs with competitive wages, and to participate fully in the activities and organizations of their communities.”

According to the council, community participation is associated closely with small, individualized homes or home-like situations with three or fewer residents, adequate supports, and qualified instructors to assist with community engagement. Persons with severe and profound impairments also have been found to benefit from these settings and activities. Citing multiple studies, the council found that such services effectively increase community involvement and personal choice while decreasing reliance on other agencies and service-related staff and costs.

So how does Maine measure up regarding its community settings? We’ve been moving in the wrong direction, according to a 2012 report from the Research and Training Center at the University of Minnesota. From 2000 to 2012, Maine officials reduced the number of small, individualized living situations from 3,810 to 2,638 while increasing the number of larger group homes (housing from four to 16 or more residents) from 717 to 1,008.

What about costs? The National Council on Disability reports that total costs for larger group homes, including staff, are three times higher than for smaller, semi-independent residences. In addition, annual per-person costs for home and community supports, designed for people needing more intensive aid, range from $12,667 to $97,126, depending on the individual, location and type of support.

According to the University of Minnesota report, Maine paid an annual per-person average of $99,524 for community supports and $173, 205 for large group homes. Current Department of Health and Human Services figures indicate we are now paying between $130,000 and $160,000 per person in Maine’s group homes. In sum, inclusive services have proven less costly, but there is scant evidence that Maine’s cost cutting is designed to enhance community participation.

Twenty years after Pineland closed, our rhetoric speaks to individuals’ rights to full social inclusion, and we have learned a lot about how to successfully accomplish that end. Consistently applying what we know remains elusive, however, reflecting both political resistance and public ambivalence.

Because of our eugenics history, persons with intellectual and developmental disabilities still are too often considered inherently deficient and unproductive. Effective, sustained community services can ameliorate this stigma, but can take us only so far. Unless employers hire, neighbors welcome, churches invite and citizens engage, our rhetoric of civil rights and service efficacy will fail to match the reality of continuing exclusion.

 

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