Home > Uncategorized > Setting the record straight about Ruth Bader Ginsburg’s historic contribution to the rights of the disabled

Setting the record straight about Ruth Bader Ginsburg’s historic contribution to the rights of the disabled

As the nation celebrates the life and judicial legacy of the late U.S. Supreme Court Justice Ruth Bader Ginsburg, we would like to recognize and set the record straight about her major contribution in one particularly vital case to the rights of persons with cognitive disabilities.

Ginsburg wrote the majority opinion in Olmstead v. L.C., which has been characterized as the most important civil rights decision for people with disabilities in our country’s history. It may have certainly been that, but not, as is usually claimed, because it held that “unjustified isolation (in institutions) is properly regarded as discrimination based on disability.”

That statement is only half the holding of Olmstead. There was another major element of Ginsburg’s Olmstead decision that has continued to be disregarded by many who have then gone on to mischaracterize the decision as advocating or requiring the end of institutional care. It didn’t.

As our national affiliate, the VOR, has pointed out, Ginsburg wrote a balanced decision that “supports both the right to an inclusive environment and the right to institutional care, based on the need and desires of the individual.”

In other words, the greatness of Ginsburg’s contribution to the rights of the disabled was that her decision was all about choice. It provides a choice between community-based care and institutional care to persons with cognitive disabilities.

In announcing the Olmstead decision on June 22, 1999, Ginsburg stated that that the answer was “a qualified yes” to the question whether the Americans with Disabilities Act (ADA) “…may sometimes require a state to place persons with mental disabilities in community settings rather than in state institutions.”

The key word here was “qualified.” Ginsburg’s majority opinion held:

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.

As Ginsburg stated, community-based care is an appropriate option for those who desire it, whose clinicians support it, and in cases in which states have the resources to reasonably support care in the community system. Unless all three of those conditions hold, institutional care may well be the appropriate setting.

The majority decision included a reference to amicus brief submitted by VOR, which stated that:

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.

Decision has been misinterpreted

Despite those clear statements, Olmstead has continuously been misinterpreted by policy makers, administrators, and even governmental agencies as requiring the closure of all remaining state-run congregate care facilities in the country and privatizing all remaining residential care. What these advocates have done is to take the choice out of it.

The U.S. Department of Justice’s Civil Rights Division, for instance, has mistitled its technical assistance website, “Olmstead: Community Integration for Everyone.” (my emphasis). That is simply not true. Olmstead clearly implied that community integration isn’t for everyone.

In line with this misinterpretation, the DoJ has for years filed lawsuits around the country to close state-run care facilities, whether the residents and their families and guardians have opposed those closures or not. This has caused “human harm, including death and financial and emotional hardship,” according to information compiled by VOR.

While the DoJ has not filed such a suit against the State of Massachusetts, that may be because the state closed four out of six developmental centers that were in operation in the state as of 2014.  Olmstead, however, has been used as a justification in Massachusetts and other states for closing sheltered workshops, as Massachusetts did as of 2016 over the objections of many of the participants and their families.

Those acts and outcomes are not consistent with the plain language of Olmstead regarding the importance of the individual’s personal choice. Nevertheless, facility closure advocates consistently cite Olmstead as justifying their actions.

Community-based care was appropriate for original plaintiffs

The Olmstead lawsuit was brought on behalf of Lois Curtis and Elaine Wilson of Georgia, who both had diagnoses of mental health conditions and intellectual disabilities, according to a website created by attorneys with the Atlanta Legal Aid Society, who represented the women in the case.

Curtis and Wilson had asked the state of Georgia to help them get treatment in the community so that they would not have to live in a mental hospital.  According to the Atlanta attorneys, the doctors who treated Curtis and Wilson agreed that they were capable of living in the community with appropriate supports. However, both women had been waiting for years for their community-based supports to be established.

Thus, the original plaintiffs in the Olmstead case satisfied at least two of the three conditions that Ginsburg set for community-based care in the decision: their clinicians deemed community-based care appropriate for them, and they desired it. But Ginsburg recognized that might not be true of everyone in institutional care.

Olmstead wrongly used to justify continuing privatization of DDS services

The Olmstead decision is based on regulations in the ADA that stipulate that public entities should provide services and programs in “the most integrated setting appropriate to the needs” of persons with disabilities.

In Massachusetts, administrations have long contended that the most integrated settings exist in the form of community-based group homes, the majority of which are run by corporate providers that receive state funding.

The problem with this view is that there have been countless examples of group homes that offer residents little opportunity for community integration. Yet the argument that group homes are more integrated than developmental centers is ingrained among policy makers, journalists, and others. This has made it accepted wisdom that all state-run congregate care facilities should be closed — an outcome that will ultimately lead to complete privatization of care.

That appears to be the goal of federal agencies such as the Centers for Medicare and Medicaid Services (CMS), which has issued regulations and provided billions of dollars in grants intended to boost the privatized group home system around the country.

On September 23, for instance, CMS announced the availability of up to $165 million in supplemental funding to states currently operating Money Follows the Person (MFP) demonstration programs. As a CMS press release put it, this funding “will help state Medicaid programs jump-start efforts to transition individuals with disabilities and older adults from institutions and nursing facilities to home and community-based settings of their choosing.”

But while this outcome is termed a choice, the closure of the institutions will actually eliminate the choice that Ginsburg articulated in Olmstead. The VOR amicus brief, as noted, stated that on a case-by-case basis, the most integrated setting may be an institution.

The Disability Integration Act of 2019 would further erode Olmstead choice

Unfortunately, the notion that community-based care is the only appropriate option for people with cognitive disabilities is so ingrained and pervasive that the entire Massachusetts congressional delegation signed onto a bill last year, which would encourage further unchecked privatization of human services, diminished oversight, and reduced standards of care across the country.

The bill, known as the federal Disability Integration Act of 2019 (HR.555 and S.117), would potentially threaten the Wrentham Developmental and Hogan Regional centers in Massachusetts, the state’s only two remaining residential facilities for the developmentally disabled that meet federal Intermediate Care Facility (ICF) standards.

The legislation calls explicitly for the the “transition of individuals with all types of disabilities at all ages out of institutions and into the most integrated setting…” (emphasis added). As such, the bill does not comply with the choice provision in Olmstead.

We have contacted the members of the members of the state’s congressional delegation to urge them to support a change in the language of the bill to respect the choice of individuals, families, and guardians either to get into or to remain in congregate care facilities.

Given that the two versions noted above of this bill are still pending in House and Senate committees in Congress, we plan to remind the members of the Massachusetts delegation of the legacy and words of Ruth Bader Ginsburg.

In 1999, Justice Ginsburg endorsed the idea of a continuum of care for the most vulnerable members of our society. Her decision and message were models of inclusivity. Now at the time of her passing, we think it is important to remember and reflect on that.

  1. Anonymous
    September 30, 2020 at 3:07 pm

    Excellent essay. It is indeed true that states and disability agencies have frequently misinterpreted this decision – to the detriment of the more challenged disabled population. Larger congregate settings, “intention communities, farmsteads and even workshop have been attacked and discontinued because they are not “community based”. The irony is that community based programing, while extremely beneficial for the higher function is often times extremely stressful and isolating for others.

    Thank you for this timely remember of what Olmstead decision really said.

    Like

  2. September 30, 2020 at 5:24 pm

    OK!!! WE NEED TO ACT

    Now we need two more legal brief or is it 3 or 4 One on Segregation and one on Exploitation and one on Institutions ie size, one on small setting and how they can be bad for people etc

    The question is what are we going to with this Like for starters send it to all the the 14(c) agencies and have them send it to their works and the guardians with a opportunity to get involved in National Action. Yes that web sit has to be set up Who is going to do that.

    The elements that I see in the complaint

    The use of “Subminimum wages” I know it is not part of any Federal Law (99% sure) and I have not seen it as part of any Fed Regulation If it is not either in the Law or Regulations then what is the meaning of the 350 page report from the get go If it is in a Reg it will be recent and then the question is what is it definition Getting out these facts so that we are all on the same page will be important.

    Part of the Subminimum wage discussion is its use of a negative concepts to describe what WE know the wage to be a commensurate wage, a proportional wage. Both concepts put the wage in the light of the meaning of Section 14 (c) of the Fair Labor Act of 1938 (FLA 1938) as amended in 1986.

    Then to talk about the Section 14 (c) of the FLA 1938 and there is NO Section 14 (c) as part of the FLA 1938 it is part of the amendment in 1986. So we point out that all these lawyers are misrepresenting the most BASIC facts Section 14 (c) is part of the FLA 1938 as Amended in 1986 where some of the Regulations are included in the amended Law.

    No mention of the Regs to implement FLA1938 much less the FLA 1938 Amended.

    The “report” even suggests that there is an Administrative FAILUER and the conclusion of the US CRC to “solve” this FAILURE is to throw the baby out with the bathwater.

    All this does not need to be in the first complaint or does it??
    Then we get to the longstanding attacks Segregation Exploitation Olmstead What CIVIL RIGHTS are the talking about Pre- Vocational Basic Business Income and Expenses – REAL WORK and Institutions.

    While pointing out that what the US CRC asserts about these issues are in large part all LIES

    We will need the best brief on each of these points that we can write

    Segregation Just the use of the word “SEGREGATION” suggests strongly suggests that when the US CRC uses the word “segregation” it is ILLEGAL and NOT socially acceptable.

    Rosa as an adult can NEVER be segregated, She has freedom to associate with whomever, whenever and wherever that she want to. Concepts to explore Black colleges and where people choose to live The document implies that Rosa and the others as adults can be told where they need to live and work and that they MUST associate with “normal” people. No place else in society do we have such ideas much less the attempt to restrict such associations.

    Also the concept of skills and intellect as gateway to participation. ie for my son to get into MIT helped that he was from Wisconsin but he was still smart but he noted not as smart as others at MIT. We have no issue with such criteria

    So a Sheltered Workshop has a criteria that to participate you have to be disabled. Simply a different use of intelligent or other ability as used for son Paul to be one of 2,000 freshmen at MIT. There is no illegal segregation and there is NO segregation. It is all freedom of choice one of OUR RIGHTS

    Exploitation (The following was written for another letter but works here as well. Written as if Rosa is writing it.) First let us look at “Exploited”. The concept is not difficult to understand. Someone has the power to get you to do something for less than what you should be paid. Well I and the others all have the RIGHT to WORK for less than the minimum wage and we have the RIGHT to WORK itself. How is that being exploited? It is not! As you know all Federal Law are enabled by Federal Regulation and in the regulation that accompany Section 14 (c) the Department of Labor (DOL) establishes specific rules that in essence makes the Special Minimum Wage a commensurate wage. Ie if I work at half the rate of a “normal” worker I will be paid at half the pay. The Law and Regulation allow me and the others to WORK in the real economy and be compensated for our real work. Yes sometimes that work can be repetitive and “boring” but then again when is not work not that way?

    So how did the NDRN come to the conclusion that I and the others were exploited. One way was calling the Special Minimum Wage a “sub-minimum wage”. One story in Segregated and Exploited is about a for profit Turkey Farm (yes both non-profits and for profit corporation can be certified by the DOL to pay the special minimum wage). The Turkey Farm had some disabled individuals who worked for them and one or a few of those workers were extremely skilled at breaking the necks of the turkeys. In fact they out produced all the other workers and yet they received very little compensation for their work. THEY WERE EXPLOITED and their exploitation had nothing to do with Section 14 (c) and everything to do with the DOL’s not enforcing the Law and Regulation. The exploitation was allowed by the FAILURE of the DOL to Protect the Workers. The State of Iowa also had responsibilities as well and they FAILED as well. The NDRN claims that it is Section 14 (c) that caused the exploitation and not failure of the DOL and various State Agencies that failed to enforce the Laws and Regulations that PROTECTED these workers.

    The NDRN knew the correct name and they knew that it is a commensurate wage but the truth would show Section 14 (c) to be reasonable and so the LIE of, I and the others, being paid a “sub-minimum wage” and being paid pennies while the RICH CEO of Goodwill and the CEO’s of other agencies were making their millions. Yes that is the LIE. It is despicable that these CEO’s were targeted when they only created WORK for the others to experience what I have experienced at VIP Services.

    The US CRC Never talks about OUR RIGHTS and the interaction of OUR RIGHTS and the Civil Rights that the US CRC claims are being violated when in FACT the US CRC is discrimination against Rosa and the other 170,000 and more importantly those who are in the Day programs because those programs will be the next to attack as that was the agenda of the THEY when this attack against 14(c) intensified 5 years ago. The THEY backed off the attack on Day programs.

    Olmstead There is at a legal argument explaining how the US CRC interpretation of Olmstead is in error that they do not acknowledge.

    Our alleged Civil Rights vs OUR RIGHTS I have yet figured out what they are talking when THEY use the term Civil Rights I have figured out at least 4 RIGHTS that all disabled individuals have There is not discussion about these RIGHTS vs the Civil Rights they claim we have that trump our RIGHTS

    Again this is from another piece that I have written

    RIGHTS OF ALL DISABLED INDIVIDUALS including those who work at Community Rehab Programs (CRP).

    It is up to the individual to exercise any or none of these RIGHTS.

    Section 14(c) of the Fair Labor Standard Act of 1938 as amended in 1986 grants all disabled individuals (6000+ in Wisconsin) who work at CRP’s (Sheltered Workshops), the RIGHT to WORK for less than the minimum wage.

    Section 14(c) also provided all disabled individuals with “the RIGHT to WORK itself” with two conditions 1) that their behavior is socially acceptable and 2) that there is an opening at the local CRP (workshop). As we know all working age individuals have the right to apply for any job that they want to. It is only if they are hired, they will have a job and be able to work. Whereas all disabled individuals who meet the 2 conditions listed above will be able to WORK.

    All disabled individuals have the right of association. What is special about CRP (workshops) is that with time, true friendships do develop with both the other workers as well as with the staff. What is critical to understand here is that personal individual associations are part of what defines us as individual human beings. These relationships, in large part, will be with others much like ourselves. To shut down CRP’s (workshops) because Disability Rights Wisconsin claims that CRP’s are segregated denies disabled individuals this most basic human right of associating with whoever they choose to be with.

    The fourth right. All disabled individuals have the right to a Person-Centered Service Plan as granted in SS 441.725. The Person-Centered Service Plan is a specific plan for each disabled individual that establishes what is least restrictive for that person and most beneficial for them as well. While the regulation is poorly written, and written as if some disabled individuals do not exist, it does provide all disabled individuals the right to a Service Plan that is specific to their needs and desires and dreams. Every disabled person has the right to a plan and that plan is all about them.

    There may be other rights that can be added but this is my growing list for now.

    Disability Rights Wisconsin has a duty, has a responsibility, to represent the RIGHTS that those who work at CRP’s, and as we know DRW is NOT only, NOT doing that, BUT they are working against those disabled individuals who benefit from working by eliminating our RIGHT to work for less than the minimum wage.

    Pre-Vocational Many of us will always be pre-vocational In general just as smart people remain smart people with intellectual impairments do not get smarter

    Basic Business Income and Expenses – Operations REAL WORK There is no demonstrated understanding of how for profit business and the lion’s share of the work is for, for profit companies. The legal concept of 14 (c) that allows Rosa and the others to WORK for less than the minimum wage is totally ignored by the Report. If this law is eliminated then Rosa and the other 170,000 WILL NEVER BE ABLE TO WORK itself unless the “great someone” is subsidizing their wages. Who will that “great someone” be? One comment was that the work was boring as if that is a reason not to do real work. (yes some of the jobs are boring as if boring work does not exist in the real world) of how the minimum wage and that will cost more that “HOUSING” them

    To include the draft of a complaint that can be filed pro se with the US CRC about the discriminatory claims made is Subminimum Wages ……

    And finally this is a great example of Institutional Discrimination Tell enough lies over a long enough period of time and quote the OLD lies to support a restatement the old lie as a NEW finding (lie) and declare that Section 14 (c) MUST GO.

    There are in round numbers 40,000,000 disabled and we represent 1/2 of 1 percent of all those disabled and yet the effort to change the lives of those they do not know. Think 1880 and Alexander Graham Bell declaring the sign language is detrimental to the deaf and the rest of the Sign Language story that does not end for 130 years with an acknowledged that it had done significant damage to tens of thousands of individuals. If we do not learn from the past WE WILL REPEAT all of its horrors.

    Like

  3. Anonymous2
    September 30, 2020 at 9:51 pm

    Thank you COFAR!

    This shows that the Adversaries of Residential Choice think that if they continue to repeat misinformation that it becomes truth. But you’re too kind in saying that they misinterpret the rules. I’d call it misrepresentation. They hope a lot of people don’t read the rules and then they are able to squeeze the most disabled out of a seat at the table where they have a right to be when decisions affect them.

    These are the ‘advocates’ who claimed “everyone can work” shortly before people had their jobs taken away from them.

    Like

  4. Gail
    October 1, 2020 at 10:01 am

    We need legislation for ombudsman oversite of these group homes.

    Like

  5. October 1, 2020 at 2:28 pm

    Thank You Dave, as usual this important information
    we would not have known if you had not investigated this. Appreciate this very much.
    Maureen

    Like

  6. Margaret Chisholm
    October 4, 2020 at 11:34 am

    Thank you for this very important article. I learned so much from it and am saddened that RBG’s intent and explanation have been ignored and misinterpreted, causing great suffering for individuals with cognitive impairments and their families and guardians.

    My profoundly disabled brother lived a graced
    life at Fernald, thanks to Judge Tauro and the incredible staff there. He died in 2001 and we thanked God that he was at peace before deinstitutionalization was enforced.

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