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Services have evolved significantly in the last 30 years. Virginia opened the first institution in 1773 (called an asylum) for individuals with mental disabilities. Institutions became the main service option for individuals with disabilities. In reality most of the positive changes in disability services took place only after litigation was filed in the later 20th Century. One major milestone was the right to education case in Pennsylvania filed by The Arc of Pennsylvania against the Commonwealth of Virginia in 1971. Until that time there was no entitlement to education for children with disabilities. As authors Braddock and Fujiara noted "class action litigation strongly influenced subsequent growth in state and federal public spending for intellectual disability services" (the words intellectual disability (ID) are substituted for mental retardation).
In Massachusetts legislative advocacy has been successful in several instances to advance budgets for services. One good examples is the establishment of the "Turning 22 Program" which funds adult services for students with ID graduating high school. Although more work needs to be done to obtain adequate funding, we have successfully advocated for increases in this line item over the past two years.
Litigation also has been necessary in Massachusetts. This was the case when the Waiting List Case was filed (Boulet vs. Cellucci, 1999). The pace of funding to those waiting was not adequate to meet the needs of individuals waiting for residential and employment opportunities. The Arc enlisted the aid of Neil McKittrick who was successful in obtaining a positive decision in Federal Court. As a result a settlement resulted in more than 2400 individuals obtaining services. There are other examples of litigation which we can discuss in a future analysis. You can also review some of them in the history book on line.
The Arc is a plaintiff in the Consent Decrees which historically focused on the terrible conditions in Massachusetts institutions (Ricci v. Greenblatt and MARC vs. Dukakis, 1974). Today however the case is being used by state school plaintiffs to slow down closure of state institutions. Massachusetts has six of the remaining seven institutions in New England.
Ten other states have closed all their institutions and they are able to serve individuals with disabilities. University studies document that individuals who move from institutions do better than those who remain behind. But change is diffiult and families with loved ones at state schools are nervous about transition. In addition there has not been much opportunity for families to talk to other families and learn about the advantages in the community.
Unfortunately, the closure of institutions is necessary. Only two options are available for us as wait lists for community services grow: New funding and reallocation of existing dollars. To invest dollars on institution campuses when families and individuals are requesting community based services would set us back further on waiting lists.
All of the present campuses require significant monies to repair buildings and grounds. The state itself projects that $200 million is necessary for the six campuses to be properly maintained. Such funds could instead be used for community options. All the individuals living at institutions could receive services matching their needs in communities near family members. Meanwhile the numbers needing community services continues to grow. And as you can imagine, other investment are required such as increasing front line staff pay and building more options for individuals with complex medical needs. New generations do not see themselves living on institution grounds. But this will be the outcome if monies are spent on big buildings. Please understand this important issue as it will affect the future of services.
You also can get in-depth information by reading legal briefs on behalf of The Arc/DLC, The Commonwealth and other advocacy or non-profit agencies supporting the right of all individuals to live in community settings.
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