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.
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."
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.
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."
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.
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."
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."
Selected press coverage and blog posts
- Nonprofit Quarterly: People as Pendulums: Institutions and People with Intellectual and Developmental Disabilities, 16th July 2014
- COFAR blog: The federal government’s cruel pursuit of deinstitutionalization, 5th May 2015
- The Atlantic: Who Decides Where Autistic Adults Live?, 26th May 2015. For many intellectually and developmentally disabled people, large campuses or farmsteads may be better options than small group homes. But new state laws could make it hard for big facilities to survive.
- Autism Society: The Federal Government’s Quiet War Against Adults with Autism, 19th April 2016
- Chicago Tribune: SUFFERING IN SECRET: Illinois hides abuse and neglect of adults with disabilities, 21st November 2016
- Chicago Tribune: SUFFERING IN SECRET: Flawed investigations ignore victims of neglect, 21st November 2016
- Chicago Tribune: A TROUBLED TRANSITION - In the rush to close institutions, Illinois ignored serious problems in group homes, 30th December 2016
- Text-only version of above 3 parts of SUFFERING IN SECRET investigation available here.
- Psychology Today: Ideology, Not Data, 22nd January 2017
- Psychology Today: Ideology, Not Data (Part 2), 16th February 2017
- The News & Advance: Why Did Tyler Bryant Die? The State Must Answer, 26th March 2017
- Spectrum: Adults with disabilities deserve right to choose where to live, 2nd May 2017
- Autism Society: Inclusion Sucks. Or, Why My Son with Severe Autism Has Nowhere to Swim this Summer, 25th July 2017
- SAGE journals: A house is not a home: The great residential divide in autism care, 10th September 2017
- Autism Society: The Decline and Fall of "Autism", 16th October 2017. "After Simon Baron-Cohen suggests autism lose its status as a disorder and instead be considered a variant like left-handedness or homosexuality, this stupefied mom marvels at the collapse of meaning in the word 'autism.'"
- Niskanen Center: How Regulation Is Preventing Adults with Autism from Getting the Care They Need, 16th October 2017
- SBS: 'What's missing is love' (article about the closure of Stockton Centre, NSW, Australia), 6th December 2017
- Chicago Tribune: Illinois' home health care industry rife with fraud, tainted by unscrupulous physicians, 12th December 2017
- eParent: Joey Jennings' story: What appeared to be one of the least restrictive settings for Joey – a one-person group home in the community – became the most restrictive for him, because it was most inappropriate for his complex behavioral needs. 9th January 2018
- Chicago Tribune: Reforms promised but group homes still suffering from problems, 23rd February 2018 | Alternative link here.
- National Review: Buckley Program Essay Contest Winner: Connecticut’s Crisis in Caring for the Disabled, 6th March 2018 | Video here.
- The DD News Blog: Forced de-institutionalization of people with DD: lives lost and lives disrupted, 4th May 2018
- Autism Society: The Closure of Sonoma Developmental Center Is No Victory for California's Developmentally Disabled, 30th May 2018
- The DD News Blog: U.S. Department of Health and Human Services finds group home residents at risk of serious harm, 11th July 2018
- High Country News: Montana lacks money to treat its most vulnerable residents, 13th July 2018
- Chicago Tribune: Audit rips oversight of group homes for adults, 19th July 2018 | Alternative links here and here. (Summary of the audit here.)
- Autism Society: Three Strikes... and He's Out? (Follow up to previous year's Inclusion Sucks. Or, Why My Son with Severe Autism Has Nowhere to Swim this Summer), 6th August 2018
- Newcastle Herald: Deaths of former Stockton Centre residents in critical NSW Ombudsman's report, 3rd September 2018
- Valley News: Developmental disabilities deserve funding, 8th February 2019. "California has been transitioning from residential to community-based care for people with developmental disabilities, with the state expecting to see **substantial cost savings**."
- In the USA, Medicaid guidance from 2014 that had the effect of substantially restricting program and residential choices, has now been withdrawn. Coverage here:
- NCSA Blog: A Federal Policy Victory for Adults with Autism, 25th March 2019
- Psychology today: New CMS Guidance Expands Options for Adults with I/DD, 25th March 2019
- PR Newswire: Together for Choice Welcomes New CMS Guidance on HCBS Settings, Urges Further Action to Improve Options and Preserve Choice for Individuals with Intellectual and Developmental Disabilities, 26th March 2019
- Coalition for Community Choice: email alert about new guidance
- Illawarra Mercury (Australia): Residents' concern over proposed closure of Mount View at Balgownie, 6th May 2019
- Newcastle Herald (Australia): Building under way in delayed state plan to move hundreds of residents with disability into group homes, 11th May 2019
- Newcastle Herald: Wendy Cuneo on the human impact of closing the Stockton Centre, 13th June 2019
- Newcastle Herald: NDIS: Former Stockton Centre residents dying in group homes, staff say, 24th June 2019
- The DD News Blog: A Critique of the Proposed Disability Integration Act, by Jill Barker, 27th June 2019 (this act ultimately did not progress but there is a new initiative in 2021: Home and Community Based Services Access Act (HCBS Access Act) )
- The Augusta Chronicle: Report: Deaths, lack of housing plague Georgia system for disabled, mentally ill, 26th August 2019
- In Pennsylvania, efforts are underway to close two out of four state centers for people with intellectual and developmental disabilities by 2022.
- Governor Tim Wolf: Gov. Wolf Acts to Reform Services and Systems to Protect and Advocate for Vulnerable Pennsylvania, 31st July 2019
- The Philadelphia Inquirer: Pa. to close two of its four residential centers for people with intellectual, developmental disabilities, 14th August 2019
- Explore Venango: Controversy Brews as Officials Hear from Both Sides at Public Hearing for Closure of Polk State Center, 10th September 2019
- Times Leader: Pa. Senate hearing today on White Haven, Polk closures, 23rd Sept 2019
- Recording of above Senate hearing here, transcript of submission by John Hirschauer here
- Times Leader: Capitol hearing ‘only the beginning’ of White Haven Center debate, 24th Sept 2019
- The DD News Blog: PA Governor announces final decision to close two of four state operated facilities for people with IID without consulting residents, families, or state legislators, 30th September 2019
- National Review: Who Decides Where Pennsylvanians with Disabilities Should Live?, 18th November 2019
- Times Leader: House approves bill that would halt closure of White Haven, Polk centers, 15th January 2020
- Erie News Now: Commonwealth Faces Lawsuit Over Plan to Close State Centers, 21st January 2020
- Times Leader: Mullery: Report shows state not prepared to close White Haven Center, 22nd January 2020
- Times Leader: State Senate approves SB-906; Wolf expected to veto it, 28th January 2020
- WHYY PBS: Wolf vetoes bill to halt closure of two state centers for people with intellectual disabilities, 12th February 2020
- Times Leader: Mullery, Toohil vow to override Wolf veto on center closure moratorium bill, 12th February 2020
- Eyewitness News: I-Team: Fighting to save the White Haven Center, 19th March 2021
- Eyewitness News: I-Team: Father leads efforts to keep White Haven Center open, 8th June 2021
- Standard-Speaker: Time to end the insanity, 1st September 2022
- exploreVenango: Polk Center Residents Relocated Amid Fizzling Legislation to Save the Facility, 17th October 2022
- City Journal: The Last Institutions, by John Hirschauer, 27th December 2022
- PAhomepage: Despite legal battle, White Haven Center to close by March, 18th January 2023
- Psychology Today: Dangerous Logic - Preferences of some disability advocates shouldn't restrict options for all, 18th January 2020
- Medium: Stop Canceling Options for Severely Autistic Adults - While our country faces a catastrophic shortage of supports, “activists have doomed many disabled individuals to receive no services at all”, 5th August 2020
- Newcastle Herald: 'Keep Stockton Centre open' campaigner Wendy Cuneo on seven years of battle since the group home plan was unveiled in 2013, with Newcastle an NDIS 'test site', 7th September 2020
- NCSA Blog: Censoring autism: We must resist the crusade to quash severe disability, 23rd September 2020
- The Pennsylvania Gazette: Against “Community” - The biggest buzzword in disability rights is undermining intellectually disabled people, By Amy S. F. Lutz, 22nd October 2020
- Newcastle Herald: Stockton Centre furniture and fittings auction raises more than $50,000 as buildings emptied, 10th December 2020
- Newcastle Herald: HOME PROBE - Alleged assault in Port group home, 14th April 2021
- COFAR blog: Congress still trying to eliminate congregate care for developmentally disabled, 19th April 2021
- New York Times: When It Comes to People Like My Daughter, One Size Does Not Fit All. By David Axelrod, 4th July 2021
- Psychology Today: What Is an Institution? It's not what you think., By Amy Lutz, 16th August 2021
- Psychology Today: An Autism Mom's Long View of Inclusion and Difference - Inclusion, whether you are disabled or not, may be overrated if not impossible. , By Susan Senator, 28th September 2021
- Psychology Today: The Reverse Field of Dreams Fallacy in Disability Policy - Even if we don't build it, they will still come. By Amy Lutz, 8th November 2021