A national group that came under criticism in this blog has asked that we publish their response. Here it is, in full. My comments will follow. (Part 2 in a series)
Dear Mr. Joondeph,
On behalf of VOR, I am writing to request that you publish this letter as a correction to your mischaracterizations of VOR in your recent blog, “Values of ADA Under Attack.”
VOR is a national, nonprofit organization advocating for high quality care and human rights for people with intellectual and developmental disabilities. We represent primarily individuals with I/DD and their families, receiving nearly all our support (more than 95%) from private contributions; we receive no public funding.
Contrary to your claim, VOR has never supported only “institutionalization.” For 30 years, VOR has consistently championed true person-centered services (support, care, residential, employment and education) based on individual choice and need [see, VOR Policy and Position Statements].
The Supreme Court recognized this in its landmark Olmstead decision, quoting VOR’s Amicus Curiae brief in support of plaintiffs Ms. Curtis and Ms. Wilson:
“As already observed [by the majority], the ADA [Americans with Disabilities Act] is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk . . . ‘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’ [quoting VOR’s Amici Curiae brief].” Olmstead v. L.C., 527 U.S. 581, 605 (1991)
Thus, it is unclear how you determined that VOR supports only institutional care. In our view, support for only community-based care or competitive employment, curtails the rights of individuals to choose and receive support that best meets their needs. Likewise, institutionalizing everyone would be an absurd and harmful policy, as well as a violation of individual rights. For this very reason, the Supreme Court urged balance, recognizing in Olmstead (interpreting the ADA) that while community integration is preferred for most individuals, some individuals have needs that are so great that they require facility-based care, leaving the ultimate decision of whether to leave a facility with the individual and his/her family/legal guardians.
I have two sons who have profound intellectual and physical disabilities. They have never been “institutionalized.” They presently live in the same small home where they receive care and support. Before that, they lived at home with me and our family. For at least a decade, I have been involved in VOR as a member, State Coordinator, Board Member, and most recently, as First Vice President. My involvement is motivated by VOR’s support for a full array of services and residential options to meet individual needs and choice, and VOR’s respect for individual and family decision-making, something that no other national advocacy organization supports.
Finally, VOR’s name is no longer “Voice of the Retarded.” We officially changed our name several years ago. Like The Arc (formerly, “Association for Retarded Citizens”), we are now simply called VOR.
Mr. Joondeph, thank you in advance for publishing this correction. I look forward to hearing back from you at firstname.lastname@example.org.
VOR First President and Board Member
Chair, VOR Issues Oversight Committee