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Calling It Modern Doesn’t Make It Good: No “Modern Asylum” Will Benefit This Generation of People With Disabilities

Recently, Dr. Christine Montross made what The Arc believes to be a deeply flawed argument in favor of institutionalization for individuals with intellectual and developmental disabilities (IDD), or as she put it, “a modern asylum”. Dr. Montross failed to address a number of key factors in her piece, but what was most disturbing was the complete lack of reference to the desires of individuals with IDD.

When The Arc was founded, nearly 65 years ago, it was all too common for doctors to tell parents that the best place for their child with IDD was in an institution. Emboldened by their collective desire to raise their children as part of their families and communities, and their refusal to accept institutionalization as the only option, The Arc’s founders fought for inclusion. To this day, The Arc stands by the belief that all people, regardless of disability, deserve the opportunity for a full life in their community where they can live, learn, work and play through all stages of life.

The vast body of research on deinstitutionalization has established that moving from institutional settings and into smaller community-based ones leads to better outcomes for people with IDD (Kim, Larson, & Lakin, 1999; Larson & Lakin, 1989, 2012). In fact, studies continue to show that people with IDD benefit from moving to the community from an institutional setting. More powerful than any of the research are the stories from individuals who transitioned from institutions into the community. These stories breathe life into this research and The Arc’s mission.

Dr. Montross’ op-ed offended many readers, but it did highlight a systemic issue. Many health care providers will not accept people with IDD as clients, or do not feel that they have the expertise to appropriately serve them. Furthermore, there are practitioners who will not accept clients who are reliant on Medicaid as their primary payer of health care services due to low reimbursement rates. Combined, these issues create a system that doesn’t always adequately serve all people with IDD.

Weaknesses in the ability of some community-based mental health treatment systems to adequately meet the needs of clients does not necessitate the return of people to archaic institutional settings. Instead, it should lead to a public outcry for vast and immediate improvements in the capacity of communities to provide mental/behavioral health care to those who need it. The Arc strongly believes that the solution is not to move back to antiquated institutions. The way forward does not, as Dr. Montross states, “[include] a return to psychiatric asylums.” The way forward includes serving all citizens and demands an evolution in the attitudes of health care practitioners which includes the belief that all people, regardless of disability, deserve the same opportunities to enjoy full lives in their communities.

While there is no denying the issues she references, as often as possible the choice of where to live must be made by the individuals who will be impacted. And, as history has shown, the approach suggested by Dr. Montross has been attempted in the past and it resulted in Willowbrook and countless other atrocities in the name of “patient care.” While community supports for individuals with IDD can benefit from improvement, we have come too far to take a step back towards segregated settings.

We welcome a discussion with Dr. Montross. Our hope is next time she has a national platform like the New York Times she chooses to consider the desires of individuals with IDD and the history of isolation and oppression they faced in institutions before making suggestions about what is best for them.

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State Chapters Making a Difference: Let’s Hear It for Alabama, Illinois, and Virginia!

Being part of the community and living as independently as possible are among the most important values and goals shared by people with disabilities, their families, and advocates. Chapters of The Arc across the country are on the front lines of pushing for inclusion and advocating for these important rights in their communities. And we want to share the progress that is being made in Alabama, Illinois and Virginia.

Alabama

The Arc of Alabama’s tireless work led to a huge victory for its state at the end of 2011. Working with other statewide IDD organizations, the W.D. Partlow Developmental Center in Tuscaloosa, the home of thousands of individuals with IDD over the years, officially closed on December 28. With the closure of Partlow, Alabama becomes the first state in the southeast and one of only 13 states in the country to no longer operate large public institutions.

“We are delighted about the closure of Partlow. We share the credit for this great accomplishment with People First of Alabama and others, but I can say it would not have happened without The Arc,” said Tom Holmes, Executive Director of The Arc of Alabama.

December’s closing meant the last 150 residents of Partlow were moved to community homes throughout the state. Partlow, which opened in 1923, was costing approximately $42 million a year to operate.

“Most of the families come back and say that they did not realize that their family members would be so much happier living in the community. That is just wonderful for us to hear,” said Tom Holmes.

To learn more about the closure of Partlow read about it in The Tuscaloosa News.

Illinois

Governor Pat Quinn’s announcement of his plan to rebalance the state’s approach to providing long term services and supports for individuals with IDD means change for thousands of individuals in Illinois. The Governor’s Active Community Care Transition (ACCT) plan will increase the number of individuals with IDD living in community settings across the state.

“This historic change in public policy embraces freedom, independence and choice. Our current system is antiquated. Only two states warehouse more people in institutions than Illinois and 13 states have closed all public institutions. More than 30 national studies show that community living provides the most safe and effective care. Yet Illinois ranks last in the nation in the number of available community settings,” said Tony Paulauski, Executive Director of The Arc of Illinois.

The Arc of Illinois has been an integral partner in moving the state toward a community based system. Over the last few months the Governor’s office has been in constant contact with The Arc of Illinois’ Executive Director Tony Paulauski and other members of The Arc.

During the first phase of the plan, residents from the Jacksonville Developmental Center (JDC) in Jacksonville, IL and from the Tinley Park Mental Health Center (MHC) in Tinley Park, IL will be transitioned to community settings and the facilities will be closed. Read more about the first of these closures.

Virginia

Last month, the Department of Justice reached a settlement agreement with Virginia requiring the state to provide community-based services through Medicaid waivers and family supports for more than 5,000 individuals with IDD. The agreement means that Virginia will no longer be heavily reliant on large, expensive, public institutions. The state will be able to focus on individualized and cost effective community based services that allow individuals to live independent lives and participate in the community.

“The Arc of Virginia applauds Governor McDonnell and his administration for taking this important step in the right direction. We salute DOJ’s leadership on making this a successful effort that will result in thousands of people with intellectual and developmental disabilities being afforded the opportunity to live “A Life Like Yours” in the community.  This landmark agreement will be long remembered as a historic moment in the ID/DD civil rights movement,” said Jamie Liban, Executive Director of The Arc of Virginia.

The state must create 4,170 new waiver slots for people currently residing in the state’s five Training Centers (about 1,000 individuals), people with intellectual disabilities who are on the state’s “urgent” waiting list for waiver services, people with ID who are under 22 and live in facilities other than the training centers, people with DD who are on the state’s waiting list for waiver services and for people with DD who are under 22 and live in facilities other than the training centers. The state also will create an individual and family support program for 1,000 individuals with IDD most at risk of institutional placement.

Detailed plans for helping individuals transition from institutional settings to community settings and establishing a quality and risk management system are outlined in the agreement. An independent reviewer will oversee the settlement agreement for the court which retains jurisdiction.

View The Arc’s full statement in response to this agreement.

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The Arc’s Reaction to the Department of Justice and Commonwealth of Virginia Settlement Regarding Institutions

Washington, DC – The Arc, the nation’s largest and oldest human rights organization for people with intellectual and developmental disabilities (IDD) serving more than a million individuals and their families, issued the following statement on the news that the Commonwealth of Virginia has reached a deal with the U.S. Department of Justice regarding four of its institutions for people with IDD.

“This settlement is a big step forward in bringing people with intellectual and developmental disabilities out of the shadows and into communities across Virginia, where they belong. The Department of Justice’s commitment to monitoring and oversight of the implementation of this agreement will be key to ensuring that the shift to community based services away from institutions will be successful for people with IDD in Virginia.

“The Arc of Virginia and the network of chapters across the state have been instrumental in putting this agreement in place. They will continue their work at the state capitol to advocate for additional resources for people with disabilities so that they can move off of waiting lists and begin receiving the supports they need to live independent lives in the community,” said Peter V. Berns, CEO of The Arc.

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The Arc Speaks Out on Potential Closing Mabley and Jacksonville Developmental Centers in Illinois

The Arc of the United States fully supports the closure of the Mabley and Jacksonville Developmental Centers. With 2,027 individuals in institutions, Illinois now institutionalizes more people with intellectual and developmental disabilities (IDD) than 48 other states. Closing these facilities will start a new chapter in the state – one in which people with IDD can move on to a life that is more inclusive and allows for the opportunity to live in the community, rather than in isolation.

Institutions enforce an unnatural, isolated, and regimented lifestyle that is neither appropriate nor necessary. According to The Arc’s Families and Individuals Needs for Supports survey (FINDS), less than 1 percent of families thought institutions were the right place for their son or daughter with IDD – so more than 99 percent of respondents wanted their loved one to live elsewhere. We should be allocating resources to create new supports and services in our communities so that individuals have a choice in how and where they live, instead of simply placing them in facilities like the Mabley and Jacksonville Developmental Centers. Shifting the use of funds from institutions to individualized supports, including housing, will help make the transition easier for individuals who reside in these facilities and create a more inclusive society – which is win-win for people with disabilities and people without disabilities.

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The Arc of Illinois Making Headlines

The Arc of Illinois has been advocating for individuals with intellectual and developmental disabilities for 60 years. Right now, there is discussion in Illinois surrounding government-run institutions for individuals with IDD. Governor Pat Quinn has the opportunity to improve the lives of people with IDD in his state by moving away from institutions and toward community based care.

After a visit with the Chicago Tribune’s editorial board, the Executive Director of The Arc of Illinois Tony Paulauski shared today the results – an editorial that advocates for this shift. We are sure that many people will gain a better understanding about the challenges the IDD community faces from this editorial.