August 12, 2014
Testimony on KanCare Oversight: Challenges and Outcomes for our Most Vulnerable
Before the Robert G. (Bob) Bethell Joint Committee On Home And Community Based Services And Kancare Oversight
Delivered by Joan Kelly, Stakeholder and Legal Guardian
[Vice President, Kansas Neurological Parent Group; VOR Kansas State Coordinator]
Good afternoon, Chairman David Crum and members of the Committee,
Thank you for the opportunity to give presentation today, and I want to commend this
Committee for your ongoing work and service.
As a stakeholders who believe in community, my husband and I utilized an array of community based services for our profoundly disabled grandson in the State of Kansas beginning 1998.
Our loved one currently lives at KNI, the Kansas Neurological Institute, residing there since the fall of 2008. He was placed there after exhausting every community option, and although we have sought reintegration, our search continues, as unfortunately, a number of community providers have refused to serve him.
By Tamie Hopp, VOR Director of Government Relations & Advocacy in Nonprofit Quarterly, July 16, 2014 (and reprinted in the September 2014 Nonprofit Quarterly Print edition)
Early reforms were quite properly motivated by the need for a system of care and supports that responded to the very individualized and diverse needs of the entire population of people with I/DD. These reforms, however, also set the stage for decades of ongoing deinstitutionalization, resulting in the elimination of specialized housing, employment and education options for people with I/DD, leaving some to question the price of “progress.”
The Pendulum Swings
Even though initial reforms were motivated by a lack of service options (an over-reliance on the ICF/IID program), it was not long before efforts to “rebalance” our system of care shifted from the expansion of options to the dramatic reduction of ICFs/IID and other specialized options.
In 1999, the Supreme Court handed down its landmark Olmstead v. L.C. decision, which should have settled the deinstitutionalization debate.
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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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