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Message from Leo Sarkissian

As 2011 comes to an end, there is much to reflect on. I’d like to thank many of you who have supported the activities of The Arc of Massachusetts. Thank you for all you do as donors, activists, colleagues and friends.

How to describe 2011 in terms of advancing community opportunities for persons with disabilities? Like our neighbors in this economy, we had to fight against setbacks. We have seen good friends pass away including Lou Nisenbaum, Allen Crocker, Hal Demone among others. But their spirit and the empowerment of change agents and friends can be a source of encouragement.

We can be hopeful for 2012 especially if we keep our eyes on the real human needs our friends face and the strategies to support them. We can make this the “year of empowerment” and educate those in our circle about the solve-able challenges we face. The history of disabilities’ empowerment and services may reflect bumps in the road but it also reflects great and varied accomplishments. In Massachusetts, The Arc has been proud to play a key role in many of them. Here we have a slice of Massachusetts stories.

ONLY:

55 years ago, legislation passed authorizing the Department of Mental Health to operate fourteen pre-school clinical nurseries

50 years ago, The Arc convinced Massachusetts policy makers to become the first state to establish testing and treatment for PKU (an inherited metabolic disease that can be treated) and PKU prevention became a national disability model for the U.S.

40 years ago, the Massachusetts Special Education Law (Ch. 766), the first such law in the nation, was enacted.

30 years ago, Home and Community based waivers were established and we fought to ensure that a community system of services would be established; Turning 22 or Chapter 688 became law and more than $10 million annually is appropriated

20 years ago, the Rolland settlement began implementation, assisting more than 1500 persons out of nursing homes, and,

10 years ago, the Boulet Wait List Settlement began to be implemented, assisting more than 2000 persons to obtain services.

Help us maintain this tradition of advocacy and empowerment. Support The Arc financially, participate as an activist and considering volunteering –there is much to do. You can submit an online donation here. We will share a calendar of event in 2012’s notes so you can join us in advocacy and celebration as your time and resources allow.

I want us to end the year with two great items (among several) which are on the web – Susan Senator’s recent op-ed in the Washington Post – “Tiger Mother to a Son with Autism” (check out her books too!) and a video from Nathan Bauer of Hammer, MN on The Arc site where Nathan shares a visit from Senator Al Franken.

My best wishes to you for 2012 – and let’s join together to make it a year of empowerment!

Photo Note: Michael Collins, UMASS Medical School Chancellor, Leo Sarkissian, Sen. Ted Kennedy and James Brett, CEO of New England Council.

The Public Portrayal of Individuals with Disabilities

Arc executive director, Leo Sarkissian, leading a meeting at the Arc office.

The Arc along with Special Olympics and other national organizations began a protest regarding the film "Tropic Thunder" and its portrayal of "mental retardation." You can read about that issue here. However, most often the portrayal of people with disabilities, particularly those with intellectual/developmental disabilities, is reflected in how our media and culture ignore them.

Case in point is a recent news story about a fatal shooting in Lynn, a story shared by a family member/professional. A bullet from the shooting was lodged in the outside of the home where persons with disabilities lived. There is a quote about the fear of a staff person who works at the house. But the status of the individuals living there is not explored. Forget about quotes. A simple question on how those who live here are feeling about the shooting is not asked. See the article here. We are writing a letter to the newspaper to bring this to its attention for the future.

But this is one example of many. It will take many people to change the way society thinks about persons with disabilities, and organizations alone will not succeed. So by the end of September 2008, we will post a standard letter that you can edit for a news story, movie, editorial, etc. in your area. We'll remind people about it during the year. It will be a tool that you can use as you spot issues in your papers, theatres and art venues.

Litigation and Evolution of Services

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.

To learn more, please go to our section on the Fernald the Institution Debate.

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.