VOR Members Respond to State Home and Community Based Services Transition Plans

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.

In two States – Kentucky and Pennsylvania – VOR members have submitted comments.

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.
To see when your State will be submitted its transition plan, visit http://hcbsadvocacy.org/.
 

VOR's Georgia Affiliate Submits Comment in Response to State's I/DD Remedial Plan

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

 

VOR’s Kansas State Coordinator, Joan Kelly, Delivers Testimony Before KanCare Oversight Committee

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.
 

People as Pendulums: Deinstitutionalization and People with Intellectual and Developmental Disabilities

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
 

VOR Calls on National Council on Disability to Respect Individual Choice, Families

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.

 

Employment & Transitioning: How Customized Employment Can Improve Outcomes for Adults with Intellectual Disabilities

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.
 
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