Individuals with Intellectual and Developmental Disabilities are Entitled by Federal Law to Residential and Employment Choice
October 28, 2014
Disability Rights Ohio (DRO), a federally-funded legal aid organization, has sent a letter to Governor John Kasich and the Directors of the Departments of Developmental Disabilities, Medicaid, and Health Transformation, threatening Ohio with a lawsuit if the State does not take action to “significantly reduce” the number of persons residing in ICFs (Intermediate Care Facilities), and transition them to what DRO characterizes as “small, integrated, community-based” placements. DRO begins its letter by stating, “We write on behalf of thousands of individuals with intellectual and developmental disabilities in Ohio...in private intermediate care facilities.” DRO also seeks to reduce employment choice by denying individuals the right to workshop and day settings.
DRO’s claim that they speak for the 6,800 severely developmentally disabled Ohioans who reside in Intermediate Care Facilities (ICFs), and others who benefit from employment choice, is outlandish and wholly untrue. Nor does DRO speak for the tens of thousands of parents, guardians, family members, and friends who know first-hand that an ICF and employment workshops give their loved ones a safe and nurturing home and productive days that will ensure their long-term happiness, and provide for their complex medical and physical needs.
DRO’s disregard for the unique desires and needs of people with severe intellectual and developmental disabilities (I/DD) denies these individuals of their personhood and strips them of their constitutional rights to life, liberty (i.e. choice), and the pursuit of happiness.
The federal regulation defining Home and Community-Based Settings (HCBS) for the purpose of Medicaid HCBS funding requires that States align their Medicaid plans and settings (residential and employment) with the new regulation’s requirements. States must submit a “transition” plan which describes for CMS why current programs are, or will become, aligned with the new regulation. Before submitting their transition plans, the regulation requires states provide for public comment.
Additional VOR member comments will be posted on VOR’s website as they are received. Unless stated otherwise, member comments were developed and submitted independent of VOR.
August 26, 2014
In March 2014, the Independent Reviewer overseeing the Settlement Agreement in U.S. v. Georgia cited State non-compliance in areas affecting the health and well-being of affected citizens with intellectual and developmental disabilities (tragedies that were also reported in the press). In addition to ordering a continued moratorium on the transitions of individuals with I/DD from State Hospitals (Medicaid licensed Intermediate Care Facilities for Individuals with Intellectual Disabilities), the Independent Reviewer required that the State write a plan by June 30, 2014 that is designed to bring the State’s support coordination system into compliance.”
The VOR Georgia affiliate, East Central Regional Hospital Family Council, with VOR’s support, recently offered its comments in response to this “Priority Plan.”
Read the Family Council/VOR letter here
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 Summer 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.
Read full article
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.