The named plaintiffs in this action seek to transition from ICFs/MR to smaller community-based residences. Appellants and VOR did not oppose their right to do so.  Rather, the appellants and VOR oppose the plaintiffs' attempt to impose their choices on appellants through a settlement and broadly defined class of individuals that includes all residents with profound intellectual disabilities who are unable to articulate their opposition to being moved.   The Court granted class certification in the face of no opposition by the Pennsylvania Department of Welfare. 

    The appellants' and VOR's concerns with this settlement are two-fold: (1) residents with profound intellectual disabilities often cannot get the care they need from the smaller residences; and (2) implementation of the settlement could so significantly depopulate the centers as to render ultimate closure inevitable.  In fact, such transfers have already resulted in ICF/MR closures elsewhere and will likely do so in Pennsylvania as well.   Even the District Court, in its decision approving the settlement, expressed concern about the problematic provisions which interpret silence as consent.  

    Specifically, VOR argued that the District Court's ruling to certify the class was at odds with the Supreme Court of the United States' ruling in Olmstead v. L.C., which supported the right of individuals to choose a residential setting according to need. “The solution is not to move everyone from one type of facility to another. This is not only in direct contravention of Olmstead, but will cause unspeakable harm to those in need of institutional care.”

    VOR is represented by attorneys Lesli Esposito, Nancy Rappaport and Jill Czeschin, of DLA Piper (Philadelphia). VOR’s brief, filed December 27, 2011, was the second Amicus Curiae brief in this case in support of ICF/MR residents and their families. The first, filed in August 2010, supported the efforts of families to intervene in the case. 

Read VOR's December 27, 2011 Brief opposing settlement.

Read VOR's August 2010 Brief supporting intervention (coming soon).

January 2012

By the Southern Oklahoma Resource Center Parent Guardian Association
and the Oklahoma Public Employees Association

Summary

The Northern Oklahoma Resource Center of Enid (NORCE) and the Southern Oklahoma Resource Center of Pauls Valley (SORC) have been home to thousands of Oklahoma’s citizens challenged with disabilities since early in the last century. Both facilities are intermediate care facilities for persons with mental retardation (ICFMR) and receive funding from the federal government through the Medicaid program. Currently, the match rate is 64 percent federal and 36 percent state funding.

NORCE was established in 1909 and SORC was converted to an institution for the disabled in 1953. The combined total population of the facilities grew over the years to a total of 2,300 residents, with schools and farming operations. Since the 1960’s, the facilities have downsized  onsiderably, as some clients moved into community settings. The 245 residents who currently call NORCE and SORC home are challenged with severe physical and mental disabilities.

NORCE and SORC serve as a public safety net for the developmentally disabled service delivery system. In addition, the facilities are a critical part of the full continuum of care in developmental disabilities, from individuals in facilities requiring around the clock medical attention to those in community settings that need minimal in-home support.

The following PGA/OPEA Vision for the Future of NORCE and SORC does consider the concerns and recommendations of the parents and guardians first and foremost. The employees of both facilities emphasized above all else that they support the parents and guardians in their choices for their loved ones and are gravely concerned with transitioning vulnerable clients from their lifetime homes.

Read Detailed Proposal

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. 

VOR also urges the President and Congress to halt all future federal lawsuits to close specialized centers until investigations of reported tragedies can be conducted. Reports of people with profound disabilities experiencing harm and even death after being displaced from specialized care settings are frighteningly predictable.  In Georgia – a situation just like Virginia – displaced residents died just one year into the implementation of a similar Justice Department s settlement.

It’s easy to argue for “mainstreaming” people who can’t vote or even complain.  But those affected by this agreement and actions like it around the country have profound intellectual disabilities and related, complex conditions. They require intensive, 24/7 specialized care – care that usually cannot be provided in small group homes or living with aging parents. 

In just this past November, it was revealed that 1,200 people have died for “unnatural or unknown” reasons in New York group homes.  Similar widespread tragedies have been reported in Washington, D.C., California, and many other states across the country. How many more people will be harmed before the Justice Department is stopped? Under the current Justice Department regime, it is justice denied, not justice served. The President and Congress must act. Changes are needed federal policy to guarantee residential choice for individuals with profound disabilities. 

# # # 

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. 

VOR also urges the President and Congress to halt all future federal lawsuits to close specialized centers until investigations of reported tragedies can be conducted. Reports of people with profound disabilities experiencing harm and even death after being displaced from specialized care settings are frighteningly predictable.  In Georgia – a situation just like Virginia – displaced residents died just one year into the implementation of a similar Justice Department s settlement.

It’s easy to argue for “mainstreaming” people who can’t vote or even complain.  But those affected by this agreement and actions like it around the country have profound intellectual disabilities and related, complex conditions. They require intensive, 24/7 specialized care – care that usually cannot be provided in small group homes or living with aging parents. 

In just this past November, it was revealed that 1,200 people have died for “unnatural or unknown” reasons in New York group homes.  Similar widespread tragedies have been reported in Washington, D.C., California, and many other states across the country. How many more people will be harmed before the Justice Department is stopped? Under the current Justice Department regime, it is justice denied, not justice served. The President and Congress must act. Changes are needed federal policy to guarantee residential choice for individuals with profound disabilities. 

# # # 

Community-based care in group homes is certainly appropriate for the vast majority of people with intellectual disabilities.  But it doesn’t work for everyone.  If you don’t believe that, talk to James Sanchez.  If anyone’s experience illustrates the continuing need for developmental centers such as the Southbury Training School, the experience of James and his brother Edwin does.
 
It was 1979, and STS at that time was still open to new admissions.  Edwin was accepted.
 
James maintains that Edwin thrived at STS during the next 20 years.  While he first lived in a large dormitory with eight to 10 beds in a room, the conditions steadily improved at STS, and Edwin was eventually moved to one of many new, smaller cottages on the campus.
 
The doctors and other staff at STS were able to put Edwin on medications that kept his aggressive behavior under control while allowing him to function successfully.  He attended day-work programs in the community and enjoyed outings to restaurants, movies, swimming pools, and camping grounds.
 
Edwin, like other STS residents, also had the freedom to roam the STS grounds under the watchful eyes of the staff. 

“It was a form of independence,” James says.  Edwin liked to walk from his cottage to the administration building — the length of about two football fields — in order to get a soda and chips from the vending machines there.  He was taught how to wash his own clothes, how to set the table for dinner, and how to interact appropriately with other people.
 
Edwin knew everyone at STS and everyone knew him.  “It’s like a large family,” James says.  Even the firemen on campus knew and liked Edwin.  Once, James was pulled over by a state trooper while driving on I-84.  “He (the trooper) asked me where I’d been and where I was going, and I said I’d been visiting my brother, Edwin, at the Southbury Training School,” James says.  “‘Oh, you mean Eddie?’” James recalls the trooper as saying.  “He gave me a break.”
 
But things were about to change for Edwin.

    Thomas now lives at Fircrest, the Residential Habilitation Center (RHC) (a state ICF/MR and specialized DD Nursing Facility) near our home.  It has been a Godsend, although he was denied admission for about a year. The State’s Department of Developmental Disabilities (DDD) claimed that there were no resources for him (even though he was on a Home and Community Based Services (HCBS) waiver). Before his admission to Fircrest, DDD suggested that for the next crisis we would just have to call the police. 

   Since moving to Fircrest, he has not had to be hospitalized once and has been stable. He is so happy in his home. It has also allowed our family to regroup since our family disintegrated and my health also became life threatening in efforts to manage Thomas at home.  We have also had to file for bankruptcy.  Moving him to the RHC has enabled us to work and become productive members of our community and also be advocates for other families who are in the shoes we were in and are in.

   When Thomas was 14 years old and living at home, I recorded him during a typical manic/psychotic episode – typical for Thomas; typical for others dealing with this. During such episodes, everything becomes intense and all-consuming for the caregiver to maintain the health and safety of the child. During the episode I taped I was trying to get Thomas to go to the bathroom prior to leaving for the day camp, which he really loves. You'll hear screaming, disorganized thought patterns, and Thomas hitting and biting himself during this taping.  I hope this audio helps people (citizens, advocates, legislators and policymakers) to hear what life is like for many of us when our child is home.

   The audio was also in response to a question by the Executive Director of an Arc chapter who asked me, "If RHCs are so great, why we don’t see people in Olympia testifying how much they LOVE living there?"

   This comment alone tells me that The Arc advocates do not understand the issue of the ICF/MR residents at all. Many of our residents are mostly non-verbal, may not tolerate the trip to Olympia, may not tolerate crowds, may not be able to maintain appropriate behavior skills for very long or may be too medically fragile to travel.

  Thomas has taught me a lot in our journey together. I’m motivated to maintain the good, compassionate home he now has at Fircrest.. I’m motivated to help others.  I founded “Because We Care – Beyond Inclusion” as one way to help.

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.”

Read More.

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 Times “Abused 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).  

    VOR finds ADD’s reaction to the horrors exposed by The New York Times a woefully inadequate and incomplete response to 1,200 deaths over the past decade (“In State Care, 1,200 Deaths and Few Answers,” Nov. 6, 2011). 

    ADD’s findings are predominately focused on process and budgeting and fail to even consider that ADD’s support and funding of deinstitutionalization efforts – removing vulnerable people from specialized care – may be one of the major causes of problems in New York and other states.  Despite the extraordinary level of deaths in the community, ADD persists in its blind devotion to community placement by pointing to the NYS Commission’s “support for segregated educational . . . and residential programs” as problematic.

    “It’s not surprising that a self-audit of one its own programs would avoid the difficult question of whether small settings are prepared to safely care for all individuals with profound ID/DD,” said Hopp. “If ADD won’t ask those difficult questions, Congress must.” 

   Citing the “enormity of the human tragedies taking place in New York and other states and the inadequacy of ADD’s response,” VOR has urged Members of Congress to respond by calling on these federal agencies to halt deinstitutionalization lawsuits until Congress has had time to  investigate how these problems occurred, determine what changes in federal policies are necessary to protect the lives of people with ID/DD who reside in the community, and  decide if changes are needed in federal policy to guarantee residential choice to the residents of facilities for people with ID/DD.

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 Times “Abused 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).  

    VOR finds ADD’s reaction to the horrors exposed by The New York Times a woefully inadequate and incomplete response to 1,200 deaths over the past decade (“In State Care, 1,200 Deaths and Few Answers,” Nov. 6, 2011). 

    ADD’s findings are predominately focused on process and budgeting and fail to even consider that ADD’s support and funding of deinstitutionalization efforts – removing vulnerable people from specialized care – may be one of the major causes of problems in New York and other states.  Despite the extraordinary level of deaths in the community, ADD persists in its blind devotion to community placement by pointing to the NYS Commission’s “support for segregated educational . . . and residential programs” as problematic.

    “It’s not surprising that a self-audit of one its own programs would avoid the difficult question of whether small settings are prepared to safely care for all individuals with profound ID/DD,” said Hopp. “If ADD won’t ask those difficult questions, Congress must.” 

   Citing the “enormity of the human tragedies taking place in New York and other states and the inadequacy of ADD’s response,” VOR has urged Members of Congress to respond by calling on these federal agencies to halt deinstitutionalization lawsuits until Congress has had time to  investigate how these problems occurred, determine what changes in federal policies are necessary to protect the lives of people with ID/DD who reside in the community, and  decide if changes are needed in federal policy to guarantee residential choice to the residents of facilities for people with ID/DD.

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.”

Read More.

The report examines the public comments submitted in response to the publication of the proposed new rules in the Federal Register.

Efforts by the Centers for Medicare & Medicaid Services (CMS) since 2009 to redefine under the Home and Community-Based Services (HCBS) Waiver what constitutes “community living” and “home and community-based” settings threaten to severely constrain choice and access to funding that could result in disastrous public policy that reverberates for decades.  An estimated 25 percent of existing eligible residential settings would not meet the new CMS criteria, and tens of thousands of disabled individuals could be forced out of their residences.

Read the LTO Ventures' Press Release here.

Read the complete “Choice v. Olmstead” report here.

VOR shares these concerns. VOR submitted comments expressing our concern regarding a proposed federal definition of "community" on June 1, 2011 and August 27, 2009.

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).

Read More

The Liaison on Capitol Hill, Washington, D.C.

Agenda, Registration and Sponsorship Details

1:00 pm VOR Board Meeting
3:30 pm State Reports
5:30 pm Networking and Hospitality Reception

1:00 pm Conference, featuring -

3:30 pm Legislative Briefing

5:30 pm Reception
6:30 pm Dinner

Monday, June 11, 2012

Participant visits to Members of Congress and their staff. Share our choice message!
Monday and Tuesday evening Initiative participant debriefings at the Liaison. Learn from others.

Complete Details and Registration

Please Join Us!!

The Liaison on Capitol Hill, Washington, D.C.

Agenda, Registration, and Sponsorship Details

1:00 pm VOR Board Meeting
3:30 pm State Reports
5:30 pm Networking and Hospitality Reception

1:00 pm Conference, featuring -

3:30 pm Legislative Briefing

5:30 pm Reception
6:30 pm Dinner

Monday, June 11, 2012

Participant visits to Members of Congress and their staff. Share our choice message!
Monday and Tuesday evening Initiative participant debriefings at the Liaison. Learn from others.

Complete Details and Registration

Please Join Us!!