International dimension of the Deinstitutionalization drive

"The campaign to solely fund small, dispersed, “integrated” settings is just as dangerous, paternalistic, and ideological as the forcible institutionalization of the mid-20th century to which it responds."
—Amy Lutz in a letter addressed to officials at the U.S. Department of Health and Human Services from over 60 community organizations and advocates for people with developmental and intellectual disabilities.

The zest to move to a "community for all" vision, i.e. "deinstitutionalization/decongregation" is not confined to Ireland. Indeed, many facilities like St Mary of the Angels face similar issues, especially in the USA. Here are some resources that highlight the problems associated with aggressive deinstitutionalization and the push for "inclusion" at any cost.

"The idea that one residential model is appropriate for the entire spectrum of intellectual and developmental disability — from college-educated self-advocates to profoundly impaired individuals at risk of detaching their own retinas or bolting into traffic — is patently absurd."
—Amy S. F. Lutz in "Adults with disabilities deserve right to choose where to live"

VOR - Speaking out for People with Intellectual and Developmental Disabilities

VOR’s mission is to advocate for high quality care and human rights for all people with intellectual and developmental disabilities (I/DD).

Founded in 1983, VOR is a national 501(c)(3) organization governed by a volunteer board of directors and funded solely by dues and donations. We receive no government support.

Throughout its history, VOR has been the only national organization to advocate for a full range of quality residential options and services, including own home, family home, community-based service options, and licensed facilities. We support the expansion of quality community-based service options; we oppose the elimination of specialized facility-based (institutional) option.

VOR represents primarily individuals with intellectual disabilities and their families/guardians. VOR advocates that the final determination of what is appropriate depends on the unique abilities and needs of the individual and desires of the family and guardians.

July 2018: Read VOR's statement in relation to ongoing debates about the true meaning of the US Supreme Court's Olmstead ruling. This letter is especially useful.  

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Murray Parents Association - Advocating for our Loved Ones!

The Warren G. Murray Developmental Center is very similar to St Mary of the Angels in many ways: It was built in 1964 to meet of needs of children faced with severe developmental disabilities. The fight to Save Murray Center began in 2012 when then Governor Quinn announced plans to close the center. Since that time the Parents Association has worked tirelessly to help others understand the value of this important center. After a court case and a change of government, the planned closure has been averted. 

From their website: "The Olmstead ruling states that the individual must not oppose placement in a less restrictive setting. Over 200 private guardians support the loving care and quality treatment provided by the Murray Center staff. We believe that Murray Center is the least restrictive setting for our loved ones and that they are part of a community. Many of our residents have received care from multiple generations in Centralia and the surrounding area over the past 50 years. They go into the community and are well accepted by community members. Placing our loved ones in small settings scattered throughout the state places them at risk for abuse and neglect and will not result in an improved quality of life.

We must continue to fight the misguided ideology of the powerful advocate groups. It’s time to listen to the families. We have no financial stake in this debate. We simply want our loved ones to continue to receive quality care and remain in their home."

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KIIDS - Keeping Individuals with Intellectual Disabilities Safe

KIIDS is a grassroots effort of parents, family & friends protecting the RIGHTS of our loved ones to live in the Community THEY need.

From their web site: "THERE NEEDS TO BE A RANGE OF SERVICES. High functioning, Mildly and moderately ID individuals can live safely and well in a community group home, but not everyone can. The developmentally disabled are a diverse group of people and need a diverse range of services from which to choose to meet their needs.

Our folks are severely and profoundly disabled, medically fragile and/or behaviorally challenged and their needs are complex.

We advocate for the RIGHTS of our loved ones and for all Pennsylvania citizens to be able to CHOOSE the appropriate quality Intermediate Care Facilities that THEY need for their medically and behaviorally challenging and complex disabilities that require intensive support."

The MYTH-TRUTH page is especially useful.

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Because We Care – Beyond Inclusion

This is a very useful blog covering a range of topics. From their 'About' page:

  • "We support a continuum of care which looks at individual, family and community strengths to promote health, safety, relationships and quality of life for people with intellectual disabilities."
  • "We realize and understand the diversity this population experiences. Everyone is different and may have a variety of support needs in order to maintain their health and safety. Community means relationships and we realize that there are also a variety of community settings which people call home. We are not advocating for one setting over another but for the setting which the person chooses and one which promotes their health and safety."
  • "We want people to understand that there are many models – inclusion is one model. It is a good model but it may not be the best for everyone. We, as family members and community members, must look at what works for each individual and allow choices to be made."

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NCSA - National Council on Severe Autism

Pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders.

Areas of interest include policy issues in relation to residential options. See statement on Medicaid HCBS Residential Policies and blog post A Federal Policy Victory for Adults with Autism.

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Together for Choice

Together for Choice (TFC) is a nationwide advocacy organization consisting of families who have family members with a disability and providers that support these men and women. TFC’s primary focus is on those with significant intellectual and developmental disabilities (I/DD) who require 24-hour care and support. TFC’s mission is to ensure that these men and women and their families have the broadest possible array of high quality options when selecting residential and vocational services and settings.

From the policy statement:
"The government should not define “community” for the individual. Rather, it is the individual who should define the “communities” in which they wish to participate. All those without a disability have this right. Those with a disability should have the same right to choose their communities."

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ICF Advocates for Choice - Choice without Boundaries

"We are a grassroots organization of parents, family members and friends who advocate and educate for the preservation, promotion and protection of the Intermediate Care Facility (ICF) level of care in the Disability Service System for the health, safety, and welfare of our severely disabled loved ones who are medically fragile and behaviorally challenged with severe autism."

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Selected press coverage and blog posts