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.
VOR strongly supports Senator Murphy’s request for an immediate investigation into the preventable, predictable widespread tragedies impacting people with I/DD in small settings across the country.
Read VOR's letter to Daniel Levinson, Inspector General for the U.S. Department of Health and Human Services.
In an April 4, 2013 letter to Marilyn Tavenner, the Acting Administrator for the Centers for Medicare & Medicaid Services (CMS), Congressman Mike Thompson calls on the agency to rethink its pending proposal to narrowly define "community" for the purpose of licensing certain Medicaid programs.
"I share my constituents' concerns that the CMS proposal relies on arbitrary criteria to determine whether a setting is 'community enough," Congressman Thompson writes. "Of particular concern is the proposed requirement that the Secretary of the Department of Health and Human Services 'apply a rebuttal presumption that a setting is not a home and community-based setting, and engage in heightened scrutiny' with regard to homes 'on the grounds of, or immediately adjacent to, a public institution,' or homes that are part of a 'housing complex designed expressly around an individual's diagnosis or disability’,” he writes.
The Congressman expresses concern that the proposed definition is so narrowly written that it is "antithetical to individual choice," threatens the viability of existing housing communities, and discourages future innovation and expansion of services.
Read Congressman Thompson’s letter.
February 26, 2013
Given its long history of providing comprehensive, highly specialized care to Connecticut citizens with profound disabilities, Southbury Training School (STS) ICF/ID is a crucial part of Connecticut’s system of care for the intellectually and developmentally disabled (I/DD) which should be preserved and expanded through open admissions.