A Disability Organization Misleads Self-Advocates and Families to Promote a Call-in Campaign to Legislators

TASH, an influential disability organization that “advocates for human rights and inclusion for people with significant disabilities and support needs - those most vulnerable to segregation, abuse, neglect, and institutionalization”, recently sent out this Action Alert to self-advocates and families:

January 25, 2018

Dear Self-Advocates and Family Members,

We need you to take action right now! Our representatives and senators are hearing from Voice of the Retarded (VOR) and other parent groups that believe we should live in institutions and that the community is not a safe place for us to live. We need to tell them that the community is not bad and there are safe places. We need to tell them that there are many people with disabilities living in the community that are safe and happy, and have the support they need. So please ask your groups to do the following: 

• Call your legislators and tell them about how you live in the community and how you are happy. 
• Ask your members and other people with disabilities to write and share their story. 
• Go visit your legislators and tell them how important community is to you and how happy you are, along with many other people with disabilities that are happy in the community. 
• Share this alert with others and ask them to do the same. 

Please email your letters to Tia Nelis, TASH's Director of Policy and Advocacy, at tnelis@tash.org.

Thanks,
TASH's Self-Advocacy Committee

As a parent of two sons with profound intellectual and developmental disabilities and as a member of VOR for more than 15 years, I am compelled to respond to the TASH Action Alert to correct misleading information and to stop the misuse of that information to promote a call-in campaign to legislators.

VOR’s Name

The name of VOR is VOR ! The organization was founded in 1983 as “Voice of the Retarded” at about the same time that TASH was changing its name from “The Association for the Severely Handicapped” to “The Association for Persons with Severe Handicaps”. As the terms mentally retarded and the word handicapped were used less frequently, the terminology in federal law began to change. Most disability organizations removed the word "Retarded" from their names and from the discussion of issues related to this segment of the developmentally disabled population.

"The Association for Persons with Severe Handicaps" eventually became TASH, just as "The Association for Retarded Citizens" became The ARC, and "Voice of the Retarded" became VOR. I believe VOR started using the acronym for the organization as its primary identification more than 10 years ago and the name was officially changed with the passage of Rosa’s Law in 2010. Rosa's Law removed the term mental retardation from most federal legislation and substituted the term intellectual disability. The definition did not change, however, and Rosa’s Law did not affect any services, rights, responsibilities or educational opportunities for people with intellectual disabilities.

Institutional vs. Community Living

To say that VOR believes that people with disabilities “should live in institutions and that the community is not a safe place for us to live” is false and misleading. A Policy and Position Statement is on the VOR Website that includes these statements:

“VOR supports both ICF/IID homes and quality community-based service options based on individual need. VOR advocates for the right of individuals with intellectual and developmental disabilities and their families to choose from a full array of high quality residential and other support options including own home, community-based, and large settings, such as licensed Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID)." 

and

“VOR supports safe and appropriate quality care in the community. When federally-licensed specialized settings (e.g., ICF/IID) are closed, individuals with profound I/DD, multiple disabilities, serious medical problems, and behavior challenges are removed to 'community-based' settings often with poorly trained staff and inadequate health and safety measures in place. Individuals with severe disabilities living at home or in other community settings often experience the same problems with poor care. By developing and promoting community care standards, VOR aims to address this widespread concern and avoid predictable tragedies, as reported in the media, state audits and peer-reviewed studies.”

Furthermore, VOR’s position on institutional care is consistent with the 1999 U.S. Supreme Court Olmstead decision. The importance of individual choice is repeated throughout Olmstead’s majority opinion as follows: “We emphasize that nothing in the ADA [Americans with Disabilities Act] or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.”..."the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk...Nor is it the ADA’s mission to drive States to move institutionalized patients into an inappropriate setting..."..."For some individuals, no placement outside the institution may ever be appropriate.”..." Each disabled person is entitled to treatment in the most integrated setting possible for that person –recognizing on a case-by-case basis, that setting may be an institution.”

Safety in the Community

Safety in the community for people with disabilities is of paramount importance to most people with disabilities and their families. In January 2018, The U.S. Department of Health and Human Services, the Administration on Community Living and Office for Civil Rights issued a joint report on an investigation of community group homes. According to Disability Scoop in an article about the joint report, “An audit of three states found that officials routinely failed to follow up on incidents ranging from head lacerations to loss of life in violation of federal and state policy. The issues are believed to be systemic affecting people with developmental disabilities residing in group homes across the country.”

In other living situations where people with disabilities live in unlicensed and poorly supervised settings and without sufficient support services, incidents of abuse and neglect occur, but they often go undocumented.

While VOR is concerned with safety in all settings where people with disabilities live and receive services, VOR has never claimed that safety does not exist nor that it is not possible in community settings.

The TASH Action Alert

There is nothing wrong with self-advocates and families telling legislators “how important community is to you and how happy you are, along with many other people with disabilities that are happy in the community,” but the implication in this Action Alert is that VOR is a threat to community living. On the contrary, VOR supports a full array of services and residential, employment, and educational options to meet the needs of a diverse population.

TASH owes an apology to its members, especially to self-advocates and families, whom the organization has misinformed. I hope that, at the very least, future pronouncements by TASH will be checked more closely for accuracy and will avoid unfounded accusations about other organizations.

Jill Barker
Ann Arbor, Michigan

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About TASH

About VOR

VOR Olmstead Resources

"Celebrating the 17th Anniversary of the Olmstead Decision: Opportunities and Choices"