Speaking out for People with
 Intellectual and Developmental Disabilities


Disability Rights Ohio Does Not Speak for Everyone

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.

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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.

Stakeholder Testimony 

Kentucky

Pennsylvania

Massachusetts

Ohio - Jane Atwood Mills

Ohio - Ben DeVorss

Ohio - Disability Advocacy Alliance

Ohio - Dan Jones

Ohio - Sherry Rinck (Boyd's Kinsman Home)

Ohio - Carlene Jones (Boyd's Kinsman Home)

New Jersey (VOR, the Association for Individuals with Intellectual Disabilities, the Association for Hunterdon Developmental Center and Save Residents’ Homes at Developmental Centers)

New Jersey (Editorial by Amy S.F. Lutz)

Additional VOR member and advocates' 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 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.

California Advocates for Residential Choice Speak on Draft Developmental Center Task Force Report

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."