See August 2012 Critique of Flawed COFAR Study on Deinstitutionalization Below
The Arc of Massachusetts, along with
The Arc supports closure
A National Conference of State Legislatures Report concludes maintaining Fernald is
June 1, 2010: Backers of institutions including unions such as AFSCME were able to get language to slow institution closure in both the House and Senate budgets. The Senate langugage actually would require the branches to vote on further closures. You can download letters from the Mass Developmental Disabilities Council, Disability Law Center and Center for Public Representation and a recent op ed from ADDP through the links below.
The materials on this site show not only that people do better when they leave institutions but also that continuing them when so few want them, diverts resources from community services for all.
Who are we?
The Arc of Massachusetts is recognized as a leading disability rights organization in the Commonwealth along with our parent organization, The Arc of the U.S. We were founded by parents over 50 years ago, and our Board of Directors is comprised primarily of family members. We have 20 regional chapters located throughout Massachusetts. See the NPR report on mental retardation and housing which includes The Arc. Click here to learn more about who we are.
What is mental retardation?
If you are interested in the public policy implications of closure but are unfamiliar with mental retardation, The Arc of the US provides several informative factsheets.
Language is revealing. We have taken a position on language that differs significantly from proponents of institutions.
Deinstitutionalization and why The Arc supports it:
- Our position in favor of institutional closure predates the current debate around the Fernald state school by 20 years. In the 1980s, The Arc of the US supported national Medicaid Reform legislation, the Chafee-Florio Bill, led by a bi-partisan coalition of federal lawmakers. Instead of mandating immediate deinstitutionalization, this legislation would have gradually transformed the service system into the community over a 20-year period. Although Medicaid Reform didn’t pass Congress (filibuster supported by unions and groups representing families at institutions), the program was transformed with a “Home and Community Based Waiver” which now far exceeds the institutional population in size.
- There is overwhelming agreement among the vast majority of advocates, families and the academic community nationwide that individuals with disabilities, including those with profound impairments, should not be segregated. The Arc and its sister organization, the American Association on Intellectual and Developmental Disabilities (formerly the American Association on Mental Retardation) have issued a joint position paper regarding this important civil rights issue.
- The Legislature proposed an outside section to the FY05 Budget that would create a Fernald Land Reuse Committee. The Arc has always advocated that the bulk of any revenues generated from the sale or transfer of surplus state school property should be used towards the development of housing and services for persons with disabilities. Unfortunately, it is unlikely that this plan will produce any revenue of value for persons with disabilities in the community. To learn about this and other items of importance related to the planned closure of Fernald which have been enacted into law through language included in the Massachusetts state budget, click here.
People are naturally afraid of change, but individuals residing within Massachusetts’ institutions have a regulatory and judicial civil right to receive equal and better services. We support these civil rights. A small percentage of families and union representatives should not have the right to direct the future of disability policy for the rest of the state that will have implications for the next 2 decades.
Status of the Six Remaining Massachusetts Facilities
Since 1977, over 85% of facilities’ residents in Massachusetts have left for the community. 1,100 remain in six facilities with all the buildings, land, and many support staff needed for the existing large physical plant. At 155 years old, Fernald is the oldest publicly funded segregated facility for people with mental retardation in the Western Hemisphere; 182 people with varied degrees of disability and medical needs continue to reside there. The other state schools are: Templeton; Monson; Wrentham; Hogan; and Glavin. Massachusetts is the last New England state with multiple facility campuses, and may soon be the only New England state with any facilities.
The current status of the facilities is not sustainable, given the desperate need to address deferred maintenance and required upgrades for safety and environmental requirements. Major capital expenditures for deferred maintenance and required upgrades can be avoided, if all six facilities are closed.
Continuing to fund facilities at the expense of community services hurts two ways. Both facilities and community consumers are short-changed with weakened community services, as explained above. Equally important, expensive beds are maintained in an old service model into which no one has moved during the past 25 years. Younger families now recognize that facilities are the most restrictive services, isolated from the community, family and friends.
We urge anyone interested in learning more about this critical public policy issue to contact The Arc of Massachusetts or to browse the resources listed below for in-depth information.
Information and Resources on Fernald, Institutional Closure, and the RICCI Class
Statement of Support: The Transition to a Community Service System Should Not Be Impeded.
Signed by 84 human service organizations in agreement with The Arc's support of the closure of Fernald.
The Advantages of Full Closure for All Remaining Massachusetts Department of Mental Retardation Facilities
The Arc supports the Patrick-Murray Administration's Closure Plan
Community Supports for Individuals with Disabilities Need More Funding
A report from The Arc of Massachusetts on the need for full funding of community services. Explains why budget dollars for DMR should favor community supports over facilities, and how additional funding could improve the lives of thousands of individuals with disabilities.
Enhancing Community-Based Services: Phase One of Massachusetts' Plan for the implementation of the Olmstead decision*
Following the Olmstead decision, Massachusetts has shifted its focus from relying on facility-based care to developing community-based options for people with disabilities and elders. This document maps out how the state plans to implement the Olmstead decision and enhance community-based services in order to “assure that Massachusetts residents with long-term support needs have access to accessible, person-centered services and community options that maximize consumer choice, direction, and dignity.” Click here for the Appendices of the Plan.*
Meet Liz Glenn: A person making it in the Community
"Living in the community is not without its share of risks, but with risk comes reward, self-fulfillment and life. Liz has thrived as a member of the rainbow of people comprised of different colors, sizes, and abilities that make up our community. Liz is the face of the community..."
RICCI Class Members: You can help support community services!
The Arc is asking Ricci class members now living in the community, or their family members, guardians, or service providers to show their support for community living. Click here to learn how...
* Viewing these documents requires Adobe Acrobat Reader. Click here to download this free software.
most disability rights organizations, strongly supports the State's proposal to close the Fernald State School. This page is designed for those interested in The Arc of Massachusetts and our position on the closure of institutions, such as Fernald, and other settings that segregate individuals with disabilities from mainstream society. The goal of inclusion requires change in many settings, as individuals with disabilities may still reside in restricted environments in the community. A group home or staffed apartment is not an automatic guarantee of inclusion.
Previous Literature Review on Deinstitutionalization Outcomes is Flawed
Elizabeth Cullen with Leo Sarkissian
COFAR in August 2012 published a literature review with several flaws. They are addressed here.
Self-determination, choice and dignity have always been central tenets of our society since its founding; yet, they are not always afforded equally to every citizen. The national policy of deinstitutionalization for people with intellectual and developmental disabilities —closing large state-run institutions and assisting individuals to move to homes—over the past 30 years is the consequence of the rightful extension of basic rights to those once overlooked by society. Today, advocates and policymakers alike agree, “that people with developmental disabilities [and ID] deserve the rights, freedoms, opportunities, relationships, activities and experiences that (are derived) from community living” (Lakin 1998, 389). Despite the clear consensus among all expert parties, an uninformed voice occasionally seeps out to champion the continued institutionalization of individuals with acute disabilities. A recent example is a “literature review” written by David Kassel and posted on the Blue Mass Group blog. Besides the glaring methodological and evidentiary problems with Kassel’s argument, the most disturbing part of the post is the author’s failure to appreciate the intrinsic value of human dignity, a basic right only fulfilled when someone lives in and is part of the community.
Mr. Kassel’s work is flawed from a methodological standpoint. In reputable academic literature reviews, the author(s) establish clear criteria for determining which studies to include in their meta-analysis. A clear standard establishes a framework for understanding the purpose of the literature review and justifies why results from the studies cited can be compared. In direct contrast to this academic norm, Kassel provides no details on his inclusion requirements instead writing, “I reviewed academic research on the topic of deinstitutionalization…” (1). Compounding his flawed approach, Mr. Kassel simply chose to read and directly reference other literature reviews on deinstitutionalization. In comparison, reputable literature reviews recode the data published in major studies to test and support their hypothesis. By conducting a “literature review” on literature reviews, this blog does not further the understanding of deinstitutionalization in any meaningful way. Finally, Mr. Kassel fails to fully adhere to a conventional citation style. By ignoring the requirement of all styles to provide page numbers for direct quotations, Mr. Kassel makes it difficult (if not intentionally impossible) for readers to confirm an excerpt is in the same context as it appeared originally. Juxtaposed to a reputable literature review on community-living (view one at http://ici.umn.edu/products/prb/212/default.html) it becomes abundantly clear that Mr. Kassel did not conduct an academically rigorous and objective survey of the literature on deinstitutionalization, but rather he quoted short passages from a narrow selection of sources in an attempt to substantiate a flawed argument.
In addition to the methodological shortcomings of his literature reviews, Mr. Kassel’s argument falls flat because he never explains why the “evidence” he presents is analogous to the realities of community-based living here in Massachusetts. One apparent example of Mr. Kassel’s reliance on immaterial sources is the study conducted by Andrew Bratt and Rob Johnson. Besides the simple problem of Mr. Kassel citing an incorrect publication date (the study is actually 11 years older), Bratt and Johnson conducted their research in Exeter, England. Specifically, Mr. Kassel quotes Bratt and Johnsons’ finding of “little evidence of integration being achieved within the local community” in his argument questioning the merits of deinstitutionalization. However, Mr. Kassel provides no justification for how possible contributing factors to the minimal integration, such as services provided to individuals with ID/DD or dominant community perception, are akin in the Commonwealth (or the United States for that matter) and England. Furthermore, Bratt and Johnson analyzed only five individuals in one community setting. With such a small sample size, it is hard to accept their findings as representative of most individuals experience after leaving an institution. Because Mr. Kassel never established the requisite framework, the Bratt and Johnson study is nothing more than a chronicle of five people’s experience in England a quarter of a century ago and is not pertinent to Massachusetts today. Other sources Mr. Kassel employs have similar flaws, as discussed above, making them inconsequential to his argument.
When voices supporting the continuation of state funding for institutions (COFAR and its allies) speak out they distract lawmakers, bureaucrats and the public from the work of advocates trying to establish adequate public funding and access to community-supports. By arguing that institutions remain the best option for those with “profound levels of disability” and the elderly and attacking weaknesses in community supports, the organization furthers isolation and segregation. In fact there is no panacea in care in any setting and the goal should be to use shortcomings as a “call to action” for those with the political efficacy to address funding. Instead the imperfections of community-options are used to justify keeping people segregated.
Another problem with the review posted by the previous writer is that it seems to argue that studies should demonstrate continuous improvement in quality of life, adaptive skills and community integration for individuals upon leaving a facility. By questioning the significance of modest gains in skills or quality of life and citing that improvements often “plateaued after a year” (Chowdbury and Benson), Mr. Kassel proves that he places an alarmingly limited value on human dignity.
Human dignity is the right to wake-up in your own house, use a bathroom without waiting in line, visit a library or even spill some coffee on your kitchen table after you personally pour it. These are automatic and tangible improvements to individuals’ well-being which are only possible outside of an institution. Furthermore, making no statically significant improvement after leaving a facility is not the same as their condition and quality of life deteriorating! As Dr. Lakin noted in his recent literature review, “even the finding of no consistently better outcome in challenging behavior with movement to community settings challenges the assertion that institutional settings are needed…” (Lakin 2011, 9). Because the constraints placed on individuals living in institutions are dehumanizing, the restoration of basic dignity when they move to the community makes it the best option for everyone.
In conclusion, the blogger has misrepresented academic literature in his effort to convince lawmakers of an antiquated position held by the advocacy groups which employ him. Deinstitutionalization is the best option for individuals with intellectual and developmental disabilities and therefore the Patrick Administration and the legislature should continue the policy of “Community First” aggressively.