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This was(once) a civil rights issue, not a healthcare management by medical insurers concern.

Posted: October 8, 2014

Our Civil Rights Movement

Bob James

One Sky Community Services


It was not so long ago that families had no choice but to institutionalize their child or go it alone.  Indeed, their doctor was apt to advise them to forget their imperfect child and have another one.  Children with disabilities were not accepted in schools; adults often not welcome in public.  Behind the walls of institutions, forced sterilizations and even medical experimentation were carried out. Conditions were substandard and often brutal; countless lives were wasted.


It took a civil rights movement, public exposure of inhumane conditions, a succession of lawsuits, and federal legislation to bring about change. In September of 1950, the first organized voice for parents was created in the form of the National Association for Retarded Children.  By 1958 there were 550 chapters.  In 1950, writer Pearl S. Buck wrote about her own daughter in Ladies Home Journal, breaking the veil of silence that was the norm for families with a disabled member.  Senator Robert F. Kennedy launched the first major salvo in the attack on dehumanizing institutions in a 1965 speech to the NY State legislature. When Christmas in Purgatory, a book of photographs taken inside an institution was reproduced in Look magazine in 1967 it brought the largest reader response in the magazine’s history.  In 1969, the Pennsylvania ARC sued Pennhurst State School, and in 1972 “Willowbrook: The Last Great Disgrace” exposed that facility to a prime time TV audience of 2 ½ million.  Congress in 1975 passed the Education for All Handicapped Children Act. Reformers like Gunnar and Rosemary Dybwad and Wolf Wolfensberger propounded a new approach, termed normalization that called for all individuals to be served in the community.


Here in New Hampshire, families initiated a lawsuit seeking to close Laconia State School and replace it with a “comprehensive system of community based services.”  They won, and by 1983 twelve newly established area agencies were moving individuals back to their home communities.  When Laconia finally closed its doors in 1991, NH became the first state in the country to have a totally community based system. Throughout these decades, the quality of the NH disability services system has consistently been ranked at or near the top of the fifty states, while being in the bottom half in terms of relative cost – a remarkable success story.


In 2011 the legislature and Governor decided on radical transformation of the Medicaid service system, giving the largest state contracts in state history to out-of-state managed care corporations to administer the system. This represented a shift away from a movement to restore and protect the civil rights of individuals with developmental disabilities, toward a healthcare management approach administered by the medical insurance industry. DD families filed a lawsuit to prevent this from being applied to Area Agencies, and have consistently turned out in public forums to state their satisfaction with the current system and their opposition to this change. At this point, the Department of Health and Human Services is drafting a plan which they contend will reflect the input they have received.


Families must put enormous trust in the services that support their loved one, now and after they are gone.  Their worries and concerns are never far away.   They are clear about not wanting to trade a successful system of local control – their control – for one operated by large corporations driven by profit and growth.  For them, vigilance never wanes and advocacy never ends. They need to be listened to.  Just as they were in the 1970’s, they are determined to be heard.


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