VOR Remembers Justice Ruth Bader Ginsburg

The following is a tribute from VOR, a Voice Of Reason, to Supreme Court Justice Ruth Bader Ginsburg who died last week at the age of eighty-seven. She was best known among disability advocates for her majority opinion in the 1999 ruling in Olmstead v. L.C.. The Court determined that under the Americans with Disabilities Act, states must move people with disabilities to community settings if treatment professionals determine that such a placement is appropriate, if the individual does not oppose such a move and if the placement can be “reasonably accommodated.” 

VOR is a national organization that represents people with intellectual and developmental disabilities (IDD) and their families, including people with severe to profound IDD, many of whom live in Intermediate Care Facilities for Individuals with Intellectual Disabilities, ICFs/IID. VOR played a key role in Olmstead by submitting an amicus brief that was quoted by Justice Ginsburg that made it clear that at times the "most integrated setting" for an individual may be an institution.

*************************

VOR Remembers Justice Ruth Bader Ginsburg 

“Fight for the things that you care about, but do it in a way that will lead others to join you.” - Ruth Bader Ginsburg

It is with great sadness that VOR mourns the passing of Supreme Court Justice Ruth Bader Ginsburg, and with great joy that we celebrate her life and the gift that she gave to our families and our loved ones with intellectual and developmental disabilities.

We wish to thank Justice Ginsburg for having heard our voice, and for having included an amicus brief submitted by VOR in her opinion attached to the Court’s landmark ruling in Olmstead: 

“Each disabled person is entitled to treatment in the most integrated setting possible for that person – recognizing that, on a case-by-case basis, that setting may be in an institution.” - Olmstead v. L.C., 527 U.S. 581, 605 (1999)(quoting Brief of VOR et al., as Amici Curiae at 11)

The Olmstead decision is often misrepresented as an ‘integration mandate’, but that’s not true. By including the ideas of VOR and others in her opinion, Justice Ginsburg declared Olmstead a mandate for choice.

141 organizations and family groups signed on in support of VOR’s brief, which was written and submitted on our behalf by Attorney Bill Burke, with input and guidance from VOR's past presidents Polly Spare, Marilyn Straw, and Mary McTernan, Government Affairs Director Tamie Hopp, attorney Sam Golden, and other members.

Justice Ginsburg taught us that if we persist, and if we unite with others to strengthen our voice, our voice can be heard - from the homes of a few concerned families, all the way to the highest court in the land.

Justice Ginsburg left us with many memorable quotes. Here are two, both relevant to VOR's cause and our mission:

“You can disagree without being disagreeable."

"Real change, enduring change, happens one step at a time.”

For more information on the Olmstead Decision, please visit our website at:
https://www.vor.net/get-help/more-resources/item/olmstead-resources-2

"I would like to be remembered as someone who used whatever talent she had to do her work to the very best of her ability."
Supreme Court Justice Ruth Bader Ginsburg, 1933 - 2020

Abelone Kelley September 26, 2020 0

PA Governor announces final decision to close two of four state operated facilities for people with IID without consulting residents, families, or state legislators

Polly on hiatus

After a long hiatus from The DD News Blog, I am picking up where I left off with Susan Jennings' compelling testimony before the federal Interagency Autism Coordinating Committee on July 23, 2019. 

Susan Jennings' severely autistic son suffered for years in abusive community care, often in a toxic over-medicated state, until the Jennings went to court and gained admission for their son to an Intermediate Care Facility for individuals with intellectual disabilities (ICF/IID). White Haven Center in Luzerne County, Pennsylvania, has the right combination of services to control his maladaptive behaviors and a setting that provides close supervision and the safety he needs to thrive. [See "Joey's Journey" for a full account of the ordeal that led to White Haven Center]

Three weeks later,  according to an AP report on August 14, 2019, the Pennsylvania  Department of Human Services (DHS) announced plans to close two of the remaining four state centers for individuals with intellectual disabilities, including Joey's home at White Haven Center: 

"The Department of Human Services said Tuesday that public meetings will be held next month to gather comment on the plans to close the Polk State Center in Venango County in western Pennsylvania and the White Haven State Center in northeastern Pennsylvania's Luzerne County"

The DHS declared that the decision to close these two facilities is final, but also admitted at a legislative hearing on 9/24/19 that the decision was arrived at without consultation with residents, families, facility staff, or legislators. 

The Pennsylvania DHS, according to the AP account, "....promised to work with residents and families, meet with potential community service providers and come up with 'individualized transition plans.' Officials said every Hamburg center [which closed in 2018] staff member who expressed interest in continued work for the state was offered a job prior to closure or in the one-year contractual placement period afterward." 

Residents and families, however, have the option of choosing to continue to receive ICF care if they disagree with the decision to move residents to community placements. This is a holding of the 1999 Supreme Court Olmstead decision that states that a person in institutional care may be moved to community care as long as the affected individual does not oppose treatment in the community. This stipulation is largely ignored by state agencies and advocacy groups who ideologically oppose institutions and tout the overwhelming success of community placements for people with IID. 

According to the Pittsburgh Post Gazette, 8/14/19, Peri Jude Radecic, CEO of Disability Rights Pennsylvania (Pennsylvania's Protection and Advocacy agency) approves of the facility closures and states that, “The Americans with Disabilities Act sought to end the isolation and segregation of persons with disabilities. Court decisions have affirmed the right to move and live in the community. For decades, our Commonwealth has demonstrated that state operated institutions can close and individuals can be moved into the community thoughtfully and safely.”  The Pennsylvania ARC has also expressed enthusiasm for these closures.

For a more accurate interpretation of the ADA according to the 1999 Olmstead decision, VOR has put together passages from Olmstead protecting choice with this introduction:

"...There is no inclusion mandate in Olmstead. Rather, the Court’s determination in Olmstead supports both the right to an inclusive environment and the right to institutional care, based on the need and desires of the individual. Olmstead guarantees choice for all
individuals, their parents, and guardians. Olmstead requires that those who are moved from institutional care to smaller, community-based group homes meet three distinct criteria to determine the appropriate residential setting. There is no mandate to deny access to institutions, to close institutions, nor to place at risk any individuals who need and choose institutional care."

The views of residents and families and others supporting Pennsylvania state facilities are expressed here, on the KIIDS website, ("Keeping Individuals with Intellectual Disabilities Safe...") and at a legislative hearing on "Open the Doors to Dignity" held on April 30, 2019.

The legislative hearing held on 9/24/19 included both support and opposition to the closing of state facilities. Highlights include testimony from John Hirschauer at 1:06 followed by Susan Jennings (White Haven), Irene McCabe (Polk Center), and Hugo Dwyer from VOR from 1:17 to 1:45.

Other interesting moments: 

There were numerous references in the DHS testimony to the amazing success of the closure of Hamburg Center last year. According to a report on the hearing from the Standard-Speaker, Hazelton, PA, 9/25/19, Celia Feinstein from the Institute on Disabilities at Temple University was one of only two witnesses from outside the DHS to testify in support of closure of the state facilities. She said Pennsylvania lags behind other states in moving people out of centers.

"She also said Temple followed people after they left the state Pennhurst Hospital that closed 32 years ago to find out if the move benefited them.

"'After many years of study, I can answer with a resounding 'yes,' Feinstein said. 'In every way we were able to measure it, people are better off.'"

Others were more concerned about the possibility of less than adequate care that residents might receive in community settings and were focused on the fact that of the 80 people moved from Hamburg Center that closed in 2018, 15 have died. 

One rationale given by DHS for not having consulted with residents, families, facility staff, or legislators before deciding to close two centers was that when the DHS floated the idea of closing Hamburg Center, it spooked workers into quitting and leaving residents insufficiently cared for. Apparently it has not dawned on the DHS that this could happen again, now that the centers that they want to close have been identified. To have care deteriorate as a center is closing is a familiar pattern that has been observed before. It has even been used as an impetus to families to move quickly in selecting a community provider, before all the "good ones" are taken.

There are 13,000 people on waiting lists in Pennsylvania for community services. Hugo Dwyer from VOR pointed out that people coming out of state facilities will be first in line to receive Medicaid Waivers to fund community services, thereby putting more strain on the system to serve people in community settings. According to the UCP Case for Inclusion 2019, page 9, although spending doubled on Home and Community based services from 2006 to 2016 and the number of people living in larger state institutions was cut in half, waiting lists for services tripled.

How have people with IID fared in other states when facilities closed?

Michigan closed its last state-operated ICF in 2009. The promise of appropriate care for everyone with a developmental disability in a community setting has not been fulfilled. "Michigan’s mental health system is failing many with severe autism" gives several examples of how people with severe autism who might have been better served in an ICF/IID are falling through the cracks and facing institutionalization in jails and psychiatric hospitals.

Georgia: The Augusta Chronicle has been following the tragic consequences of forcing people with developmental disabilities and mental illness out of institutions and into communities that are not prepared for them and are unable to meet their needs. "Report: Deaths, lack of housing plague Georgia system for disabled, mentally ill" by Tom Corwin, 8/26/19, relates how "An independent reviewer found that despite Georgia’s claims of compliance, a state health care system for the developmentally disabled and mentally ill is still inadequate." 

In 2010, Georgia reached a settlement with the U.S. Department of Justice to move residents of state facilities to community settings. According to the article, 

"An Augusta Chronicle investigation in 2015 found nearly 1,000 deaths among those patients in community care in both 2013 and 2014, and the state has twice halted moving them from state hospitals into community care over the lack of adequate care among those providers. In its last Annual Mortality Review that covered fiscal year 2017, Jones [the independent reviewer] noted that the death rate has continued to climb each year, from 12.5 per 1,000 in fiscal year 2015 to 16.4 per 1,000 in 2017.

“'Perhaps most significantly,' Jones notes, the death rate for those the state has already identified as high risk is anywhere from twice to four times as high."

Washington State: from Because We Care -- Beyond Inclusion 

in a series of Blog posts - "Stuck in the Hospital"

California: "Falling Through Cracks: When The Safety Net for Young Adults With Autism Spectrum Disorder Fails" by Eva Loeffler, 2/25/19

In Pennsylvania, there is bipartisan support from legislators, especially those from the affected counties, to have the state legislature review the decision by DHS to close two of its state-operated centers.

See also full coverage of the PA legislative hearing from the Standard-Speaker from Hazelton, PA:  "Advocates, Opponents Of White Haven Center Closing Head To Harrisburg For Hearing", 9/25/19.

Abelone Kelley September 30, 2019 0

VOR: Celebrating the 20th anniversary of Olmstead

Celebrating the 20th Anniversary of the Olmstead Decision: Opportunities and Choices 

VOR acknowledges the 20th Anniversary of the Olmstead Decision and celebrates in its opening doors to community living for people with intellectual and developmental disabilities (I/DD) who are able and wish to take advantage of such opportunities. The Court’s decision in Olmstead was balanced and comprehensive. It presented a road map for how to meet the aspirations of those seeking inclusion while protecting the needs of those with more severe intellectual disabilities. VOR is proud of the role that we played in presenting an amicus to the court, showing the need to include all people with I/DD in their ruling. 

Recently, the Department of Justice (DOJ), and the Administration for Community Living (ACL) issued press releases celebrating the 20th Anniversary of the Olmstead decision. Unfortunately, their ideological focus with one key part of Olmstead, “community integration”, at the expense of the other key part, “choice”, has reduced options for all people with I/DD and especially those with the most severe and profound forms of I/DD. Whether or not this is an innocent misreading of the ruling or a deliberate misrepresentation of the Court’s opinion, this limited interpretation of the plain language of Olmstead has done significant harm to many of our most disabled citizens. 

By insisting that all people with I/DD live in the community, the DOJ and ACL are treating people with I/DD as a monolithic group, not as unique individuals. DOJ and ACL are substituting the wishes of the government for that of the person with I/DD or, where relevant, the parent or legal guardian. While their policies have opened doors for the less severely disabled, they have closed important doors for the more severely disabled. Many of these individuals have lifelong needs that require a very high level of care, the kind often found only in public and private Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID). 

DOJ and ACL are pursuing this agenda in the name of the ADA and Olmstead, but that is not what the ADA and Olmstead call for. Both the statute and the Supreme Court case embody the best values of American society —nondiscrimination and choice. All of our civil rights laws contain both elements. Civil rights laws do not tell people where they must live or work. They guarantee individuals are not denied opportunities based on a particular factor, and they expand choices for individuals who have suffered discrimination. In sharp contrast, DOJ and ACL are using federal dollars to bring lawsuits and promote policies that needlessly and dangerous eliminate important options – ICFs/IID, sheltered workshops and facility-based day programs – that many of our most disabled individuals rely on and prefer over small community residences. 

In pursuing a one-size-fits-all ideology, DOJ and ACL are ignoring the vital rights of choice embodied in the ADA itself: As the Court clearly stated in Olmstead: 

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings . . . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it. Olmstead v. L.C., 527 U.S. 581, 601-602 (1999). 

In fact, the Court specifically incorporated the right of choice in the second prong of its holding: 

“(b) the transfer from institutional care to a less restrictive setting is not opposed by the affected individual,” Olmstead, at 587. 

Even DOJ and ACL’s concept of what constitutes the most integrated setting contradicts the view of Justice Ginsburg: 

“[For some individuals, no placement outside the institution may ever be appropriate. ‘Some individuals, whether mentally retarded or mentally ill, are not prepared at particular times - perhaps in the short run, perhaps in the long run - for the risks and exposure of the less protective environment of community settings;’ for these persons, ‘institutional settings are needed and must remain available.’ ” . . . Each disabled person is entitled to treatment in the most integrated setting possible for that person – recognizing on a case-by-case basis, that setting may be an institution” Olmstead, at 605. 

 Not only are DOJ and ACL ignoring the plain language of governing law and decision, they are ignoring the harmful effects of their policies. Journalists have time and again documented the high rates of abuse and mortality for our most disabled citizens who have been forced out of congregate care facilities into unprepared communities. Federal agencies should stop dictating the lives of the severely disabled, and instead, join hands with the community of individuals with I/DD to ensure that all people with I/DD receive quality services and supports wherever they choose to reside. 

The ADA and Olmstead are the beacons for providing more opportunities for people with I/DD, but they do not dictate one-size-fits-all solutions. They are to provide rights and protection for everyone. Individual choice among the widest possible range of quality living and occupational options is what is necessary to realize the goals of the ADA and Olmstead. VOR supports the full reading of Olmstead, making individual choice of services paramount and ensuring a full range of living and work options in order to meet the spectrum of needs of this very diverse population. 

******************************************************
VOR is a national organization that advocates for high quality residential and work options and human rights for people with intellectual and developmental disabilities. Established in 1983, VOR is a 501(c)(3) non-profit organization, governed by a volunteer board of directors and funded solely by dues and donations. VOR receives no government support. 

Abelone Kelley July 02, 2019 0

VOR, "a Voice Of Reason", comments on a National Council on Disability report on guardianship, Part 2

The National Council on Disability (NCD) Report, "Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities”, is over 200 pages long and contains historical as well as current information on guardianship. To simplify and focus VOR's response, VOR comments on the seven findings from the report.

The NCD admits from the outset that there is a lack of reliable and comprehensive data on guardianship that makes it impossible to know for sure whether systemic reforms are necessary. This caveat, however, does not prevent the NCD from making recommendations for reform. Part 3 of The DD News Blog comments on the report will cover more information about the NCD and the philosophical underpinnings of the movement to replace guardianship with Supported Decision Making and other alternatives.

***********************************

VOR Comments on the Seven Findings of “Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities” 

Finding 1: There is a lack of data on existing guardianships and newly filed guardianship. 

VOR agrees with this finding and the recommendation to “develop initiatives to produce effective and comprehensive data on guardianship”. We recommend that data should also be collected on the welfare of persons who have been removed from the protections of court-ordered guardianship. 

This finding supports a conclusion that without more reliable and complete data on guardianship, it is not possible to determine whether systemic reforms are needed. Evidence is also lacking that would support the limiting of guardianship or the wholesale replacement of guardianship with Supported Decision-Making or similar alternatives. 

Finding 2: People with disabilities are widely (and erroneously) seen as less capable of making autonomous decisions… 

VOR disagrees with the above statement, especially the word, “erroneously”. It may be true that some people with disabilities are incorrectly assumed to be unable to make autonomous decisions. Others, especially those with profound and severe intellectual disabilities and other complex medical and behavioral conditions, are indeed incapable of making decisions for themselves in some or all aspects of their lives. When necessary, they should be afforded the due process protections of guardianship to assure that their interests and rights are protected. 

In recommending that the DOJ [U.S. Department of Justice] should issue guidance to states on their legal obligations under the ADA [Americans with Disabilities Act] in regards to guardianship, it is not clear what the NCD has in mind or how much control the federal DOJ has over state court-appointed guardianships. Unfortunately, the ADA and the 1999 Supreme Court Olmstead decision interpreting the federal anti-discrimination law have been widely misinterpreted to require that services be provided in the “community”. They have been incorrectly used to limit the choices and range of services available to people with I/DD. 

Guardianship may be inappropriate for some people with disabilities, but a finding that an individual lacks the capacity to make informed decisions and needs the protection of guardianship is not in itself discrimination. 

Olmstead does not address guardianship or other forms of surrogate decision-making. The 2014 Home and Community-Based Settings Rule, however, confirms the authority of state courts to appoint guardians to represent people with disabilities: “We note that where a legal guardian, conservator, or other person has the sole authority under state law to make decisions related to the individual’s care, the state must comply with the decisions of the legal surrogate.” [p. 2995 of the Federal Register of 1/16/2014; Definition of Individual’s Representative] [emphasis added]. 

The recommendation that DD Councils, Universities of Excellence in Developmental Disabilities, and Protection and Advocacy organizations should work to avoid guardianship ignores the recognition of individual needs, including the possible need for court appointed guardianship. 

Finding 3: People with disabilities are often denied due process in guardianship proceedings. 

VOR believes that the vast majority of Probate Courts and state guardianship laws assure due process when properly enforced. We would appreciate any information on courts that do not adhere to this standard. 

Finding 4: Capacity determinations often lack a sufficient scientific or evidentiary basis. 

VOR believes that this finding is a broad generalization and is not accurate. Requests for guardianship usually include statements from qualified physicians along with other information on the functioning abilities of the individual and recommendations on the need for guardianship. Recommendations and observations by parents and other family caregivers as to the functioning abilities of the individual should be included in assessments for guardianship. 

Finding 5: Guardianship is considered protective, but courts often fail to protect individuals. 

VOR believes this statement is overly broad and subjective. Most states require reports from guardians on the condition of the person under guardianship, and many require additional oversight of guardianship cases. 

We agree with the recommendation for appropriate levels of oversight and regulation of professional and public guardians. 

Finding 6: Most state statutes require consideration of less-restrictive alternatives, but courts and others in the guardianship system often do little to enforce this requirement. 

VOR believes that for people who can make decisions for themselves, less restrictive alternatives to guardianship should be available, based on the needs and desires of the individual. The recommendation to “use SDM [Supported Decision-Making] and the court systems to restore people’s rights”, even for people with severe intellectual disabilities, is questionable. Restoration of rights must consider the capacity of the individual to make decisions in some or all aspects of the person’s life and whether guardianship is needed to ensure a person’s safety, health, and general well-being. SDM has not been proven to be an effective method to replace guardianship and could instead place the person in harm’s ways. 

Finding 7: Every state has a process for restoration, but this process is rarely used and can be complex, confusing, and cost-prohibitive. 

VOR believes that this finding may or may not be true, given that, “Data on restorations is seriously lacking, making it impossible to tell how many individuals are in unnecessary guardianship…”[page 167 of the Report]. There must be recognition that ending guardianship for some people may be fraught with unintended and harmful consequences. For an individual who has undergone rigorous assessments on his/her ability to make decisions, and has been found unable to do so, assessments would either have to show that the initial assessment was incorrect or that changes in the person’s decision-making abilities no longer support a need for guardianship. 

For the most part, the federal Protection and Advocacy system opposes guardianship on an ideological basis rather than following its mandate to consider and protect the rights of individuals with developmental disabilities. We believe that to encourage P&A organizations to continue on this path with extra funding to remove individuals from guardianship would be a poor use of federal funds.

**********************

VOR Comments Part 1

Olmstead Resources

Celebrating the 17th Anniversiary of the Olmstead Decision: Opportunities and Choices

Guardianship vs. Supported Decision Making

Abelone Kelley December 06, 2018 0