On January 30, 2014, VOR President Ann Knighton and Vice President Jill Barker sent letters to National Council on Disability Board Members, including Chairman Jeff Rosen.
Calling on NCD to “support choice, reject forced deinstitutionalization, and include families/guardians as stakeholders,” VOR pointed to the over 350 communications from families of individuals with profound intellectual and developmental disabilities (I/DD) from around the country that NCD has received urging it to reject forced deinstitutionalization and embrace individual choice.
These families were writing in response to NCD’s deliberations with regard to an NCD policy on deinstitutionalization, in follow up to NCD’s October 2012 “Deinstitutionalization Toolkit” and companion document.
"The vast majority of these families have family members with profound I/DD who also experience medical, physical and/or behavioral challenges so extreme that highly specialized, licensed facility-based care is necessary for survival. All of these families support residential choice to accommodate the vast array of human need, from small to facility-based homes,” VOR wrote.
"An 'all or nothing' approach places our most fragile individuals at great risk and compromises NCD's responsibility to advocate for all people with disabilities," VOR added.
NCD has not yet responded.
By Terry Archer
EP Magazine, October 2013
The shift from Sheltered Employment to obtaining Community Employment for all is a lofty goal and one that we all hope is obtainable. Let us look at some facts of both community and sheltered employment.
California Association of Psychiatric Technicians (December 20, 2013) - A Lanterman Developmental Center (LDC) Psych Tech serving on the state Task Force on the Future of Developmental Centers strongly cautions that much more needs to be done prior to taking any action of any kind regarding California developmental-center services. In a letter to task-force leader and California Health and Human Services Secretary Diana Dooley regarding the group's draft report to the Legislature, Brad Whitehead noted that, while the draft document isn’t a closure mandate and offers hope for continuing and reimagining state developmental services, in-depth data- and choice-driven work remains. "I maintain the heartfelt hope that our task force has not been a mere formality, but that it actually marks the start of what must be a much more involved statewide and national conversation on the need for quality, professional services for all Americans with developmental disabilities."
Kathleen Miller, President of the Parent Hospital Association, who served on the Task Force, also sent a letter to Secretary Dooley stating that information on outcomes associated with prior transitions from developmental center care to smaller settings was critical before making any determination about the future of California's developmental centers. "Until death data confirming that these services, and the transitions to them, do not cause the decline and unintended deaths of medically fragile developmental center clients, they should not be forced into other living options. Currently we do not have access to this data. . . Before we eliminate the safety net of the Developmental Centers for those with enduring and complex medical needs, we request that there be data collected on death rates. In the event that there is an increase in the rate of deaths during closures; we feel that needs to be addressed prior to any plan to move the remaining medically fragile individuals out. It is only reasonable that the DDS and anyone concerned about the safety and well being of these individuals would do this."
By Ralph Kennedy
About the author: Ralph M. Kennedy is Marla’s Dad and the Executive Director of Tennessee Family Solutions.
As the founders of a non-profit agency serving adults with severe intellectual and multiple other disabilities, my wife, Tracy, and I realize just how much a few determined people can help make change happen for our loved ones, and how important it is to realize the generosity of this great nation and its citizens in every state in the union.
How Marla Changed Our World
Marla Jane Kennedy (Tracy was told that her name means “bittersweet gift of God”) is the youngest of the three girls that Tracy and I raised and, in Marla’s case, are still raising. Born in 1976, at birth, Marla gave every indication of being another perfect angel. But, at four months of age, the seizures began. We have never found a definitive answer for their onset or their continuation for 37 years. At first, keeping Marla at home was our only consideration.
But soon, these troubling circumstances required us to realistically consider the survival of our family unit, and getting Marla the educational benefits our little family community tried, but failed, to deliver.
Over the years Marla was served in multiple of community settings, including group homes and foster care. It was a very mixed bag and it seemed we were always begging good staff to stay, and advocating to have the not so good staff removed.
At one point, Marla was found wandering along a four-lane highway while her staff allegedly took a one-and-a-half hour shower.
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In its October 2013 issue, EP Magazine published "When Equitable Does Not Mean Equal: Respecting Diversity and Choice: VOR presents its Key Principles in Support of Ensuring the Rights and Opportunities for All People with Disabilities," VOR's perspective on individual choice and diversity of needs. The article included VOR's "Key Principles in Support of Ensuring the Rights and Opportunities for All People With Disabilities" and VOR's request to the broader community of advocates to support these person-centered principles.
In response, Alison Lozano, the Executive Director of the New Jersey DD Council, wrote a letter criticizing VOR's choice position and article, arguing instead that "Everyone [with developmental disabilities] must live alongside everyone else in a regular neighborhood, enjoying their community to their fullest extent. This is what is called diversity." Alongside her letter, EP Magazine also published VOR's rebuttal to Dr. Lozano's claim. Geoffrey Dubrowsky, a VOR Officer and New Jersey DD Council Member, corrected her characterization of VOR and explained VOR's position in support a full array of residential options, from small homes to larger licensed facility based care, based on individual need and choice. His positions in both VOR and the New Jersey DD Council, and his role as an advocate for his son (who lives at home), his nephew who lives at home and will need community-based services in the future, and his niece who receives facility-based care, lent credibility to his (and VOR's) position in support of legitimate choice based on individual need.
To read both letters, click here.
To read VOR's original article and principles, click here.
VOR is a national non-profit, non-provider organization advocating for high quality care and human rights for all people with intellectual and developmental disabilities (I/DD).
With this letter, we present our “Key Principles in Support of the Rights and Opportunities for All People with Disabilities: Respecting Individual Choice” (VOR, September 2013).
As you will read, VOR is distinguished from all other national advocacy organizations in our support for a full array of residential and support options. We expressly support community-based care for individuals who choose that level of support, and expressly reject the closure of specialized congregate care settings (“deinstitutionalization”) for people who choose and need that level of care.
Our principles embrace the reality that people with disabilities are individuals with unique and varying needs. VOR rejects a “broad brush” approach to policies and rights which help most people with disabilities, but not others who experience profound I/DD or other serious I/DD and medical and/or behavioral disabilities. Civil and legal rights should not be spliced, applying to some, but not all, individuals with intellectual and developmental disabilities.
Read letter and principles here
Read More about VOR, including our Principles, Policy and Position Statements - the bottom line is choice.