VOR Submits Federal Comment: Defining "Community"

June 28, 2012

VOR submitted detailed comments in response to proposed rule CMS-2249-P2 (May 2, 2012) with regard to “Medicaid regulations to provide home and community-based setting requirements of the Affordable Care Act for the Community First Choice State plan option," and for the Medicaid Home and Community-Based Services (HCBS) Waiver, including defining and describing "community."

Summary of Comments

1. Federal law and individual choice

Amendments are needed to ensure adherence to the choice principles espoused in the preamble of the proposed rule and required by federal law. Olmstead supported a range of options. The Court expressly recognized “institutional care” as one legitimate option. The proposed rule must take care not to further limit choice by reducing funding for innovative programs which CMS – not the Supreme Court or even Medicaid law – deem “institutional.”

2. Principles of “community” still biased, risking support for quality residential programs that, in fact, “promote independence and integration”

In the spirit of choice, and in furtherance of federal law, VOR strongly urges CMS to reconsider its position with regard to the provision of home and community-based services on ICFs/MR campuses and planned residential communities for people with developmental disabilities.

We do not agree that proposals by states to provide HCBS on ICFs/MR campuses or planned residentialcommunities “clearly exceed reasonable standards for HCBS,” (77 FR 26378) especially when the provision of such services meets needs, is sought by individuals and their families, and would ensure good outcomes for those served.

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Choice Matters: VOR Testifies in New Jersey

Today, VOR testified at the New Jersey Task Force on the Closure of State Developmental Centers. Geoff Dubrowsky, VOR Board Member, spoke on our behalf, referencing his personal experiences as a father and uncle of individuals with profound intellectual disabilities and autism. He also referred to extensive written testimony submitted on behalf of VOR by VOR New York State Coordinators Cristy and Hugo (Hugh) Dwyer.

As the name indicates, the Task Force on the Closure of State Developmental Centers is a legislatively-created entity which is considering the fate of New Jersey's Developmental Centers. VOR testified in support of developmental centers, state licensed ICFs/MR. Our testimony provided quality, cost and legal justification for maintaining developmental centers and expanding their professional services to nonresidents.

"VOR offers the Task Force a unique organizational perspective, but one that is consistent with the perspective of families. Choice matters. VOR is the only national advocacy organization that supports the provision of a full spectrum of care options for individuals with ID/DD, from own home and smaller homes to federally-licensed larger residential homes (Intermediate Care Facilities for Persons with Mental Retardation (ICFs/MR)), including New Jersey’s Developmental Centers."

Read VOR's Written Statement Here

Read Geoff Dubrowsky's Compelling Statement to the Task Force Here.

 

VOR Slams Justice Department Plan to Close Virginia Centers for Disabled

For Immediate Release
January 27, 2012
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VOR Slams Justice Department Plan to Close Virginia Centers for Disabled
Calls on President Obama and Congress to Intercede

In the last speech he ever made, Hubert Humphrey said, "...the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped.”
 
The Department of Justice’s announcement January 26 of a settlement agreement with Virginia to close state training centers for profoundly disabled individuals ignores Humphrey’s compassion and elicits an alarming—and likely dangerous—prospect for Virginia’s most fragile citizens.

On behalf of our constituency and their families in Virginia and nationally, VOR calls on President Obama and Congress to stand up for these affected citizens, help them reclaim true choice, protect them from predictable tragedies, and reverse this dangerous decision by the Justice Department in Virginia. 

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VOR Renews Calls for Moratorium on Deinstitutionalization Lawsuits

See Updated Release - November 30, 2012

January 12, 2012

Concerned About Deaths of Intellectually Disabled Individuals,
National Organization Renews its Call for Moratorium on Deinstitutionalization Lawsuits

    VOR, a national advocacy organization representing people with intellectual disabilities and their families, today renewed its urgent request of Members of Congress in several states to call for a moratorium of federally-funded deinstitutionalization lawsuits.

       VOR renewed its call for Congressional action in light of ongoing reports by the New York Times which detail the ‘unnatural or unknown” deaths, abuse, neglect, and financial fraud perpetrated on New York’s most vulnerable citizens with intellectual and developmental disabilities (see, New York TimesAbused and Used” series, from March 2011 – current). 

    “Reports of people with profound disabilities experiencing harm and death after being displaced from specialized settings are frighteningly predictable,” said Tamie Hopp, VOR’s Director of Government Relations and Advocacy, citing a bibliography of similar reports from around the country.

   A recent New York Times article reported that the Administration on Developmental Disabilities (ADD) released a report criticizing New York’s federal protection and advocacy system, the NYS Commission on Quality of Care & Advocacy for Persons with Disabilities (“U.S. Report Criticizes New York on Monitoring Care of Developmentally Disabled,” January 11, 2012).  

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VOR Seeks Moratorium on Deinstitutionalization Lawsuits

December 21

Concerned About Deaths of Intellectually Disabled Individuals,
National Organization Calls for Moratorium on Deinstitutionalization Lawsuits

    VOR, a national advocacy organization representing people with intellectual disabilities and their families, today asked Members of Congress in several states to call for a moratorium of federally-funded deinstitutionalization lawsuits.

    “Protection & Advocacy and Department of Justice lawsuits have forced people with severe intellectual disabilities from their specialized homes and into smaller, unlicensed settings that are too-often not prepared to handle people with such severe degrees of intellectual disability,” said Tamie Hopp, VOR’s Director of Government Relations & Advocacy.

    VOR’s call for a moratorium was prompted by the New York Times reporting of tragic preventable deaths of hundreds of people in New York group homes. Specifically, the Times found that “One in six of all deaths in state and privately run group homes [in New York], or more than 1,200 in the past decade, has been attributed to either unnatural or unknown causes. (“1,200 Deaths and Few Answers,” November 6, 2011).

    “The silence by federal agencies in response to these deaths is deafening,” said Hopp. “Not only have P&A and DOJ done little if anything in response to these deaths, which numbered more than a 100 per year over 10 years, they have continued their ideological warfare on larger Medicaid-licensed and funded ICFs/MR.”

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IL-ADD Releases Cost Analysis

The Illinois League of Advocates for the Developmentally Disabled (IL-ADD) has challenged the myth that all persons with intellectual and developmental disabilities (I/DD) can be served for less cost in smaller, unlicensed settings.

On October 13, they released a summary and  detailed cost analysis that considered the actual cost of care for an individual in a state Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) as compared to what that same individual would cost in a smaller setting. The analysis considered three care scenarios for BRB in a Home and Community-Based Services waiver setting (called "CILAs" in Illlinois).

BRB is a current resident of a state-operated ICFs/IID. BRB is 41 years old, 6' tall, 190 lbs, and healthy. He has a pervasive developmental disorder with borderline intellectual functioning. He is being treated for obsessive/compulsive behaviors which presently involve consuming huge amounts of fluid; interruptions of is O/C behaviors can bring violent responses. He also has a history of life-threatening PICA, however this has been completely extinguished in his present state-operated ICF/IID setting. He is prone to unpredictable explosive physical aggression toward peers, staff and property. He has been expelled from community-based programs.

While very challenging, BRB is not the most challenging among his peers at his ICF/IID; he cannot be dismissed as a uniquely expensive case. For example, he does not present severe medical conditions, seizure activities, sexual aggression, fire-starting, or (at this time) PICA.

Cost Comparison Findings (Summary)

Some closure advocates claim that people can be served in the community for "on average $55,000" per year. In fact, BRB's care would cost:

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