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.

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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

Are opponents of special wages for people with IDD protecting their civil rights or limiting job opportunities?

Saint Lucy

December 6, 2019

This is from Together For Choice (TFC), a national advocacy organization for people with intellectual and developmental disabilities. According to the TFC Website, 

"Together for Choice was organized by providers and families across the country seeking to enhance the right of individuals with developmental disabilities to choose where to live and how to spend their days. We stand for the proposition that individuals with developmental disabilities should have the same rights as everyone else to decide where to live, work, recreate and receive services."

TFC is encouraging its members and other interested parties to send comments to the U.S. Commission on Civil Rights regarding special wage certificates that protect jobs for people who are not able to work for competitive wages in fully integrated work settings. 

Submit your comments to the US Commission on Civil Rights BY DECEMBER 15.

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Action needed to submit comments to the U.S. Commission on Civil Rights Regarding 14(c)

Dear Together for Choice Member:

Section 14(c) of the Fair Labor Standards Act continues to be under attack. Once again it is critical that we act to protect the work opportunities of our loved ones. The United States Commission on Civil Rights held a briefing in Washington, D.C. and is accepting comments through December 15 on the following topic: “Subminimum Wages: Impacts on the Civil Rights of People with Disabilities.” The way the topic is phrased makes it clear where the Commission is going. It uses the derogatory term “subminimum wage” and turns special wages that accommodate an individual’s abilities and helps them gain employment into a violation of their civil rights.

As we have previously discussed, special wages for those with disabilities is permitted under Section 14(c) of the Fair Labor Standards Act and has been in existence for over 80 years. This provision permits employers to pay individuals with disabilities a specialized wage based on their ability to perform the job. At no point does the statute refer to these wages as “subminimum.” The purpose of Section 14(c) is to help individuals with disabilities to obtain employment. No one is forced to work at 14(c) wages. Therefore, the statute preserves choices for our loved ones; it preserves their civil right to choose the employment setting that best suits them.

Last spring when we asked you to submit comments on 14(c) to the Department of Labor, your response was overwhelming. There were far more comments supporting 14(c) than opposing it. It was important that the Department of Labor hear from the families that would be affected by a repeal of this important law. We must do the same now with our comments to the US Commission on Civil Rights. The briefing scheduled for last Friday, November 15, had a full list of previously selected speakers. Virtually all of the scheduled speakers oppose Section 14(c) and want to see it eliminated along with work programs designed to meet the needs of those with developmental disabilities. The Commission needs to understand that the repeal of Section 14(c) will mean the loss of employment for men and women with significant intellectual or developmental disabilities, like our loved ones. It is important that the Commission hear from us, the families and providers that serve those with intellectual disabilities. The Commission must recognize that there is no “one size fits all” solution when it comes to employment of individuals with disabilities.

The real civil rights issue here is choice. The right of our loved ones to choose the employment option that best meets their needs must be respected. To repeal 14(c) and deny our family members that choice would violate their civil rights.

Therefore, please submit your comment to the US Commission on Civil Rights BY DECEMBER 15.

https://www.usccr.gov/press/2019/11-13-Subminimum-Wages-PR.pdf

... Please make sure you put your comment in your own words. Individual comments have a much greater impact than those that look like copies of others’ comments.

Comments can be emailed to: subminimumwages@usccr.gov

(If you'd like for us to keep a record of your email, you can copy info@togetherforchoice)

Comments can also be mailed to the Commission at the following address:

OCRE/Public Comments
U.S. Commission on Civil Rights
1331 Pennsylvania Ave. NW
Suite 1150
Washington, DC 20425

More Choices for people with IDD and their families in Washtenaw County, Michigan

This is a note from Becky Altschuler, another resourceful parent who is creating a program for adults who are not candidates for vocational programs but need a variety of community activities:

Due to the need for high quality day programs for young adults with disabilities, a group of parents is starting a new program in Ann Arbor. This program is intended for young adults who've aged out of the school system (recently or not so recently), and are not candidates for vocational programs. If space is available, we'll also welcome young adult students during the summer break. 

Our goals for this program are to get our kids out in the community and to involve them in a variety of activities. We will meet Wednesdays and Fridays staring June 19, from 9 am - 4 pm at the Ann Arbor Center for Independent Living. 

If you'd like more information about whether this program is a fit for your son or daughter please contact me at A2becky40@gmail.com. We also welcome anyone who wants to work with us to create meaningful options for our kids in adulthood.

Reflections on Disability Tribalism

This is what happens when you google yourself. You discover things you wrote or commented on years ago that you have completely forgotten about. I don’t recommend the Self-Google, but at least I am prepared now with an explanation if someone confuses me with a fitness columnist from the Montreal Gazette who has the same name.

I wrote this comment on disability neurotribes in September 2015, after the publication of the book “Neurotribes: The Legacy of Autism and the Future of Neurodiversity” by Steve Silberman. I was commenting on a review in Psychology Today  of “Neurotribes” by Amy Lutz, the parent of a son with severe autism. She took issue with Silberman’s characterizing autism as a “strange gift”, having experienced the most profound and extreme manifestations of the disabling disorder for the segment of the population like her son.

There was a reply to my comment from Silberman, rebuking me partly for commenting on his book without having read it. It’s true, I had not read it although I still plan to read it when I get the time. But good grief! The book is over 500 pages long and it has no immediate application to the everyday experience of my sons. I will read it one day when I am not waiting for the next phone call about Danny’s next trip to the emergency room for seizures or pneumonia. But my point is that disability tribalism can take an ugly turn when it is  applied to demand uniformity of thought and allegiance to beliefs that are based on half-truths and overly broad generalizations.

This is what I wrote in September 2015: 

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Autism Tribes?

Submitted by Jill Barker on September 29, 2015 - 11:21am

One of the most persistent problems in the realm of disability is the impulse to label and classify people to the point where they lose their individuality and we can’t see the trees through the forest. We all do that as a way of making sense of our world, but it stops having any practical value when we impose our generalizations on everyone who has been assigned a particular label.

I haven’t read Steve Silberman’s book on neurodiversity, but I wonder how a group as diverse as people with autism can be called tribal. I have two sons with profound intellectual disabilities and severe cerebral palsy. I have met people with physical disabilities as severe as my sons who communicate and think as well as most people and have formed what you might call tribal bonds with others with similar disabilities. Their allegiance to their own tribe is probably personally satisfying, but it does not give them license to dictate to people like my sons and their families what they are supposed to need and want. This in fact happens when disability self-advocates support the elimination of services and residential housing that they personally abhor, but are needed by people with higher support needs who lack the ability to make decisions for themselves.

I have known families torn apart by the lack of services to help them with a family member with dangerous behaviors or overwhelming medical and personal care needs. Nothing is gained by pretending that these situations don’t exist or that failure to provide for these needs has anything to do with the character and competence of family members.

Saline, Michigan: Families take the initiative in creating new housing for people with DD

Read and listen to a Michigan Radio (NPR) interview, “People with disabilities at heart of new Saline neighborhood” by Doug Tribou, 1/29/18. Patty and Karl Rabe of Saline, Michigan, down the road from Ann Arbor, have joined with other parents and a local developer to create a new neighborhood that will include housing for their adult children with DD.

Their son, Bill Rabe, is 28 years old and lives with his parents. He has developmental disabilities including severe speech and vocabulary problems and needs someone around to help him. He will be living in a condominium in the new neighborhood and sharing resources with other adults with DD. His parents will also move into the planned community and be close by if Bill needs their help. According to the interview, “..Bill holds down two part-time jobs, is a Special Olympian, and likes to watch movies and play video games. His favorites are hockey games. “

The new neighborhood is called Maple Oaks; groundbreaking took place in October 2017. This project is the result of years of planning by the families, the developer, and the community of Saline. There is a great deal of excitement looking forward to the success of this project, in stark contrast to other communities that have reacted with fear and ignorance at the prospect of providing homes for people with DD.

According to the Saline Sun Times News in an article, “New Residential Housing Development Planned For Saline In Demand" by Angelo Parlove from 7/14/17, “A project team led by William Godfrey, who is the principal at Three Oaks Development and Advisory Services in Ann Arbor, plans to bring a multi-family development containing 34 units, which will consist of 10 single-family homes, eight duplexes and two community buildings which will hold another eight units each.”

Another article in the Saline Post “Saline Approves Final PUD for Development of 600 North Maple Road” by Tran Longmoore, 07/25/2017, describes the changes to zoning for Planned Unit Development or PUD that allows mixed density residential development for this project.

The developer William Godfrey said of the people moving into the new community, “some families already reside in Saline, while some are coming from out of town. Buyers include empty nesters who want to live close to family, families with children with special needs and young families who want to live near the middle school.”

The NPR interview and the additional news articles give a good idea of the intricacies of planning a neighborhood that prides itself in including housing for people with developmental disabilities.

Desiree Kameka from Madison House Autism Foundation, who was interviewed by NPR,  lauds the Saline community for providing stable housing for adults with DD. “Kameka says unlike group homes, the families will own the condos, giving them more control. Most of the young adults qualify for some government funded in-home care. The families are hoping to pool some of those resources…'They know that that housing will be secure...that their loved ones will never be kicked out, just getting placed in the next empty bed counties away, because a provider decides they don’t want to serve that person anymore.’"

Not everyone agrees that this project is a good way to integrate and house people with disabilities in the community: 

“Dohn Hoyle thinks the Saline project falls short. Hoyle is the public policy director for the ARC Michigan. Because the condos will have 24-hour care and house only residents with disabilities, Hoyle sees less independence than what’s being marketed…’It will be their own place in the sense of their own condo, but remember what you’ve done is you’ve set up a group-living situation [by] having everybody who lives there have a disability,’ Hoyle said.”

Dohn Hoyle appears to be discounting or overlooking friendships and a desire to live together among some people with disabilities, the opportunity to rein in costs and improve services by sharing resources, the choice of people with disabilities and their families to live in such a community, and the excitement and enthusiasm by the Saline community for the success of the new neighborhood. 

Let’s hope that Hoyle does not lobby the State to refuse funding for services to the disabled residents as he has done in the past: 

The ARC Michigan: Our Way or the Highway

The ARC Michigan to the State : Stop funding congregate settings

New York Minority Report on DD Services: Olmstead Misinterpretation

This is from the New York State Assembly minority task force report on the Olmstead Decision and its impact on the state's developmental disability community. The C.A.R.E.S. Plan (Championing Aid, Rights, Equality and Services) makes recommendations to correct the unintended consequences resulting from a misinterpretation of the 1999 Supreme Court Olmstead decision by the U.S. Department of Justice and the State of New York. 

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[pages 3-4 of the C.A.R.E.S. report]

OLMSTEAD MISINTERPRETATION 

On June 22, 1999, the United States Supreme Court held in Olmstead v. L.C. that unjustified segregation of persons with disabilities constitutes discrimination in violation of Title II of the Americans with Disabilities Act (ADA). The Court held that states are required to place persons with developmental disabilities in community settings rather than in institutions when (1) such community placement is appropriate; (2) the affected persons do not oppose the transfer from institutional care to a less restrictive setting; and (3) the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others with mental disabilities.

In 2009, President Obama directed federal agencies to vigorously enforce the civil rights of Americans with disabilities. Since then, the Department of Justice (DOJ) has made enforcement of the Olmstead Decision a top priority. As such, the DOJ has created a technical assistance guide to assist individuals in understanding their rights under Title II of the ADA and its integration mandate. However, when explaining what factors are relevant in determining whether an individual does not oppose an integrated setting, the DOJ simply states that in cases where the individual wishes to stay in an institutional setting, that such individuals who have been institutionalized or segregated have been given very little information and are unable to make an informed decision. Therefore, public entities must take “affirmative steps” to remedy this history of segregation regardless of the individual’s wishes to stay in institutionalized care.

The DOJ also states that segregated settings include, but are not limited to: (1) congregate settings populated exclusively or primarily with individuals with disabilities; (2) congregate settings characterized by regimentation in daily activities, lack of privacy or autonomy, policies limiting visitors, or limits on individuals’ ability to engage freely in community activities and to manage their own activities of daily living; or (3) settings that provide for daytime activities primarily with other individuals with disabilities. Therefore, any community service that provides day habilitation services for individuals with disabilities is considered segregation, according to the DOJ, and must be discontinued.

In October 2013, Governor Cuomo’s Olmstead Cabinet...released a report and recommendations titled “A Comprehensive Plan for Serving People with Disabilities in the Most Integrated Setting” which also ignores the second prong in the Olmstead Decision. The Cabinet made a blanket recommendation to “assist in transitioning people with disabilities into the community from developmental centers, Intermediate Care Facilities, sheltered workshops, psychiatric centers, adult homes, and nursing homes,” giving no deference to an individual’s wishes to stay in institutionalized care. In some cases, families have never been asked if moving their family member out of institutional care is even in the best interest of the individual.

This “one-size-fits-all approach” does not work in the developmental disabilities community as every person has different abilities and different wishes. Testimony was shared at each forum from people with disabilities currently employed at sheltered workshops and individuals expressed their passion for working there, seeing their friends, and receiving a pay check. If sheltered workshops are closed entirely, some parents of individuals with developmental disabilities are concerned that their child will not be able to be integrated into the community workforce since they will not be competitive with other available employees in the community. If sheltered workshops remain open, creating an integrated work environment, it will result in jobs being taken away from individuals with disabilities. At the Task Force forums, some individuals with disabilities stated that they prefer being with their friends in the sheltered workshops.

See also, "The Olmstead Decision Has Been Misinterpreted" from VOR

Funding and the availability of support services for I/DD are not keeping up with the demand

4,902,835 with Intellectual and Developmental Disabilities (I/DD) in USA

1,389,611 supported in an out-of-home residential setting

852,923 individuals living with a caregiver 60 years or older

244,195 residential placements funded from 1994 - 2011

Excerpts from the Madison House Autism Foundation (MHAF), "5 Things You Need to Know about Disability Housing and Advocacy" by Desiree Kameka:

Funding for support services for adults with autism and other I/DD is not keeping up with the demand

States are hoping that families will continue to support their loved ones with disabilities until they no longer can, but delaying assistance until a crisis or death occurs should not be the only option. Parents are often forced to leave the workforce, and adults with I/DD are not given opportunities to grow by leaving the nest. In the best situations, adults with I/DD are content at home but become increasingly dependent on an aging family caregiver; in the worst situations, they are stuck in an abusive and isolated home as states assume that living with one’s family is the best option for everyone. States may even offer financial support to keep an adult with I/DD in his family home. It is essential that people have access to public funding for the supports and services they require to live in a setting outside of the family home. The graphic [above] shows the enormous need for housing alongside the actual growth of residential support.

Check out your State Profile from the State of the States in Developmental Disabilities, a study that has tracked data for more than 35 years. To find residential trends in your state click here.

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Government officials do not hear from everyday families nor recipients of publicly funded supports services with I/DD, and this impacts future housing and support choices

Who is talking to CMS or other policymakers as they develop regulations? The most prominent voices today are paid, professional advocates in the DC-metro area. These paid advocates schedule meetings, create statements, attend government events and hearings, and sit on various task forces made up of others in the same circles. While their policy recommendations may make sense from an ideological standpoint, these ideas are often unrealistic in implementation and lacks generalizability when considering the diverse needs and preferences of individuals who utilize waivers. For example, CMS regulations on HCBS waivers requires waiver recipients to come and go from their house at any time. This is an important right for many people, but implementation of this regulation without additional funding for the wide array of waiver recipients makes the regulation simply words on paper.

Let me illustrate: For an autistic adult who can not identify the difference between his front yard and the street, leaving the house without support staff is unsafe and may put that person at risk of being hit by a car. Reimbursement of support staff may allow for only one staff person to support three individuals living in the house. Following CMS regulations, if the staff member is required to accompany one of the housemates on a walk, the two remaining housemates would be left unsupervised at home. If these housemates lived in a pedestrian-oriented gated-community, they could all walk freely in their neighborhood as cars are intentionally restricted. Unfortunately, a neighborhood of this design would be considered isolating by CMS’s standard.

See also the Coalition for Community Choice

Read the full article here

Illinois Independent Living Centers rally to oppose choice

According to an article in the Illinois Herald-News by Lauren Leone-Cross, 4/4/16, leaders from two Illinois Centers for Independent Living rallied opposition to House Bill 6304 in the Illinois House of Representatives. 

The bill would allow for “an alternative model” of licensing for “continuum of care” centers for people with developmental disabilities. It is supported by Misericordia, a long-established non-profit continuum of care community in Chicago.

According to the article:
 
Sister Rosemary Connelly, the nonprofit's longtime director, said this alternative care method provides a choice for families of those with severe developmental disabilities. "Community-integrated living arrangements are not for everyone, yet it's perceived as the ‘right and only way,’” Connelly said…“[Opponents] are really denying families the right to choice,” she added.

The Centers for Independent Living along with leaders from the Illinois ARC claim that the bill perpetuates “an antiquated system of service delivery and reinforces Illinois’ historic institutional bias."

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As passionate as the opposition is about preventing communities like Misericordia from continuing to receive public funds, it was no match for Sister Rosemary. The bill passed through the House committee and has won approval by the Illinois House of Representatives.

If you visit the Misericordia campus, you will see that it is neither antiquated nor isolated. Misericordia, including its campus and community residences and businesses, has changed over the years to meet the changing needs of the disability community. When I was there in October 2015, they had just opened an Alzheimer’s nursing facility for people with disabilities as well as maintaining a variety of living and recreational facilities. It is located in a north side Chicago neighborhood with access to all the amenities of city life along with specialized services for people with the most severe disabilities.

The 2014 Home and Community-based Services (HCBS) rule is being exploited by federal and some state agencies and federally-funded advocates to limit choice and shift more responsibility onto over-stressed families and communities unprepared to serve people with severe disabilities. Misericordia’s programs and services may be in  jeopardy if this continues. 

And isn’t this ironic? Centers for Independent Living are required to have a majority of their staff and board members be people with disabilities, but their leadership opposes all congregate settings that group more than 3 or 4 people together when they have intellectual and developmental disabilities. Here’s an interesting question: If a person with ID/DD wants to work  at a CIL, could HCBS funding to assist the individual be denied because of the institutional quality of the CIL with so many people with disabilities in one place?

More on Misericordia...

What does the ADA "Integration Mandate" really mean?

Title II of the Americans with Disabilities Act (ADA) prohibits discrimination on the basis of disability in State and local government services. Federal policy on the provision of services and benefits to people with disabilities is far more flexible and less restrictive than many advocates of full community inclusion are willing to admit. There are no mandates that prohibit particular settings or services for individuals with disabilities in general, and the needs and choice of the individual are a primary consideration.

Here is the link to § 35.130 of ADA regulations on "General prohibitions against discrimination" that describe requirements for State and local governments in providing services to people with disabilities.

Below are some of the requirements that may at first seem contradictory, but are written to assure that individual needs take precedence over general presumptions and bias based on preconceived ideas of what individuals are capable or not capable of doing as a class:

Paragraph (b) (1) (iv): A public entity, in providing any aid, benefit, or service, may not, directly or through contractual, licensing, or other arrangements, on the basis of disability…

Provide different or separate aids, benefits, or services to individuals with disabilities or to any class of individuals with disabilities than is provided to others unless such action is necessary to provide qualified individuals with disabilities with aids, benefits, or services that are as effective as those provided to others;

Paragraph (b)(2): A public entity may not deny a qualified individual with a disability the opportunity to participate in services, programs, or activities that are not separate separate or different, despite the existence of permissibly separate or different programs or activities.
 
Paragraph (d): A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.

Paragraph (e): Nothing in this part shall be construed to require an individual with a disability to accept an accommodation, aid, service, opportunity, or benefit provided under the ADA or this part which such individual chooses not to accept….
  
An analysis of the regulations discusses requirements that allow for both the effective provision of services and choice, as well as assuring that individuals are not restricted from equal participation in a public entity’s programs or activities. Page 193 of the regulations includes an analysis that clarifies the meaning of these important paragraphs:

Paragraph (b)(1)(iv) permits the public entity to develop separate or different aids, benefits, or services when necessary to provide individuals with disabilities with an equal opportunity to participate in or benefit from the public entity’s programs or activities, but only when necessary to ensure that the aids, benefits, or services are as effective as those provided to others.

[This] paragraph must be read in conjunction with paragraphs (b)(2), (d), and (e). Even when separate or different aids, benefits, or services would be more effective, paragraph (b)(2) provides that a qualified individual with a disability still has the right to choose to participate in the program that is not designed to accommodate individuals with disabilities.

Paragraph (d) requires that a public entity administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.
 
Paragraph (b)(2) specifies that, notwithstanding the existence of separate or different programs or activities provided in accordance with this section, an individual with a disability shall not be denied the opportunity to participate in such programs or activities that are not separate or different.

Paragraph (e), … states that nothing in this part shall be construed to require an individual with a disability to accept an accommodation, aid, service, opportunity, or benefit that he or she chooses not to accept.

Taken together, these provisions are intended to prohibit exclusion and segregation of individuals with disabilities and the denial of equal opportunities enjoyed by others, based on, among other things, presumptions, patronizing attitudes, fears, and stereotypes about individuals with disabilities. Consistent with these standards, public entities are required to ensure that their actions are based on facts applicable to individuals and not on presumptions as to what a class of individuals with disabilities can or cannot do. [emphasis added]

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In short, the ADA does not restrict individuals from receiving services in specialized settings for people with disabilities nor does it allow public entities to prevent access to services and benefits available to all. 

The 1999 U.S. Supreme Court Olmstead decision affirms this interpretation of the ADA and includes protections and choice for people in institutional settings.

Parents of adults with DD : Before I'm Gone

A short preview of parents of developmentally disabled adults discussing their fears for their children's future.

You can watch the full version and find more information at Parent Advocates for Neurodevelopmental Housing in San Francisco.

Washington State : ICFs providing necessary services

Washington State Residential Habilitation Centers are part of the full range of services necessary to serve people with developmental disabilities. RHCs are Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) that are funded and regulated by The Centers for Medicare and Medicaid Services. They are facilities that provide services to people with the most intense medical and behavioral needs. 

ICFs/IID have other names depending on the state such as Human Development Centers, Developmental Centers, Training Centers, etc.

Unfortunately, these centers are closing all over the country because of a deliberate misinterpretation of the 1999 Supreme Court Olmstead decision, by a misguided desire by states and the federal government to save money, and by the zealotry of federally-funded disability rights organizations that oppose institutions on principle without consideration of the individual needs and circumstances of people served by ICFs/IID. 

Instead of expanding the use of these centers to meet the needs of their surrounding communities, the 2014 HCBS (Home and Community-Based Settings) rule makes it almost impossible for the greater community to access the resources of ICFs. The HCBS rule disallows funding for settings in the proximity of ICFs or for ICF services unless they meet strict "heightened scrutiny" criteria. This has the effect of marginalizing people who live in these facilities and their families and cutting off solutions to serving people with severe disabilities in the community that could alleviate their desperate need for services.

Here is background information on ICFs/IID.

Because We Care - Beyond Inclusion is a great source of information on RHCs in Washington State and commentary on the need for a full continuum of services and care for people with DD.

Michigan: My Job, My Choice

From the ACCSES Weekly Windup for October 14, 2015:

At MARO, we believe in establishing raised expectations - that all working-age citizens with disabilities in Michigan can have access to competitive, integrated employment.  MARO has also recognized the trend in current public policy emphasizing competitive integrated employment - jobs in the community, at or above minimum wage, and interacting with others without disabilities - as the priority outcome for all job seekers.  But it is further recognized that a comprehensive array of employment services should be a part of a menu of options, and people with disabilities in Michigan should be able to access these options based on each individual's desires, needs, goals, and informed choice.  That's why MARO members provide a full spectrum of employment options for people with disabilities in Michigan - based on respect for the individual's choice.

MARO is a Michigan organization for providers of rehabilitation services.

Ohio Congressional Delegation supports full range of options and choice for DD in community settings

This is a letter from the Ohio Congressional delegation to CMS urging flexibility and consideration of the intense needs of people with intellectual and developmental disabilities in implementing the Home and Community Based Services rule.

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September 23, 2015

Mr. Andrew Slavitt, Acting Administrator
Centers for Medicare & Medicaid Services
Department of Health and Human Services
200 Independence Avenue, SW
Washington, DC 20201

Dear Acting Administrator Slavitt:

We appreciate your willingness to work with the state of Ohio on its Transition Plan to ensure compliance with the final Home and Community Based Services (HCBS) rule issued by the Centers for Medicare & Medicaid Services (CMS) in January of 2014. We are writing to ask that you provide the State of Ohio with the flexibility and time necessary for a successful transition — one that prioritizes the safety and wellbeing of those with developmental disabilities.

We request that during the rule’s implementation that consideration be given to the unique needs of all affected individuals, including those who have intellectual and developmental disabilities. As published, the rule does not holistically attend to the Intellectual Developmentally Disabled (I/DD) population, many of whom may not be capable of community employment even with specialized job training and supported job coaching due to their intense needs. The overriding concern is that prioritizing community employment without also considering a person’s individual circumstances, needs, and preferences may pose a health and safety risk either due to these individual’s unique challenges or by subjecting them to an environment that may not be in their best interest. [emphasis added] Without adequate time and support, the rule’s implementation could result in the elimination of a choice that provides I/DD Ohioans with daily structure, meaningful activities, and a productive work environment.

We support the goal to provide individuals with every available opportunity to participate and hold employment in the community. To achieve this goal, the option to choose the best-suited program must be available to communicate, articulate, and effectively argue for the type of support they require. We urge you to consider the current reliance on and future state of the full range of opportunities for this population — including, but not limited to community employment, adult day programs, and sheltered workshops — and the individual’s preference for these programs when implementing this rule. To ensure success, adequate time and planning must be allowed to guarantee the health, safety, and well-being of all individuals who will be entering a more community-based work environment. We encourage you to work closely with and provide flexibility and support for the State of Ohio to ensure that the rights and interests of all affected individuals are prioritized throughout this transition period.

Thank you for your attention to this matter. [This is followed by contact information for Senator Portman’s or Senator Brown’s staff.]

Sincerely,

The letter is signed by John Boehner, Speaker of the House, U.S. Senators Rob Portman and Sherrod Brown and members of Congress Bill Johnson, Robert Latta, Brad Wenstrup, Steve Chabott, Rob Gibbs, David Joyce, Michael R. Turner, Marcia Fudge, and Marcy Kaptur

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PDF version of the letter with signatures

The Olmstead right of individual choice and the duty of guardians: Whose choice is it?

From the VOR Website:
 
August 2015

Without question, the 1999 U.S. Supreme Court Olmstead decision requires that community placement not be imposed on individuals who do not desire it. The Olmstead right of individual choice is clear, but what about situations where the individual with an intellectual or developmental disability (I/DD) has a legally appointed guardian?

While the role of guardians in advancing the right of individual choice has been debated, the law clearly supports the right and duty of guardians to make decisions on behalf of their individual in their best interest.

The Americans with Disabilities Act (ADA) and Olmstead

25 years ago, the ADA was passed to prohibit discrimination on the basis of disability by public entities (Title II) and in employment, transportation, public accommodations, and communications.  ADA regulations for Title II indicate that a “public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” [Integration Regulation, 28 CFR § 35.130(d) (1998)].

In Olmstead v. L.C., 527 U.S. 581 (1999), the U.S. Supreme Court considered the scope of the ADA and its Integration Regulation. The issue before the Court was “whether the [ADA’s] proscription of discrimination may require placement of persons with mental disabilities in community settings rather than in institutions.” (Id. at 587) 

Answering this question with a “qualified yes,” the Court held that the ADA requires community placement only when “the State’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities.” (Id., emphasis added).

Defining Individual Choice and the Role of Guardians

As highlighted above, the Supreme Court held that individual choice is a prerequisite to community placement, explaining further that there is no “federal requirement that community-based treatment be imposed on patients who do not desire it.” (Id. at 602) Nowhere in the decision, however, is the role of guardian discussed.  Attorney Patricia G. Williams found the Court’s silence on this point telling:

“Absent some clear direction from the U.S. Supreme Court to the contrary, we must conclude that the laws pertaining to guardianship, conservatorship, durable powers of attorney and advance directives remain intact.” (Patricia G. Williams, Esq., September 6, 2000)

Even prior to its Olmstead decision, the Supreme Court held high the perspective of families and legal guardians (often family members), in residential placement decisions:

[C]lose relatives and guardians, both of whom likely have intimate knowledge of a mentally retarded person's abilities and experiences, have valuable insights which should be considered during the involuntary commitment process. Heller v. Doe, 509 U.S. 312, 328-29 (1993) [see also, Developmental Disabilities Assistance and Bill of Rights Act, 42 U.S.C. 15001(c)(3)(1993) (“Individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive and play decisionmaking roles in policies and programs that affect the lives of such individuals and their families” (emphasis added)].

Sam Bagenstos, a former Department of Justice attorney and well-known proponent of deinstitutionalization, also noted that while Olmstead and ADA regulations refer to the choice of the “individual with a disability,” one could argue that these same sources “should be interpreted in light of the background state-law principle that guardians can make decisions for their wards.” [Bagenstos, S., "The Past and Future of Deinstitutionalization Litigation," Cardozo Law Review (Vol. 34:1) (2012)].

According to Bagenstos, “courts have not definitively resolved this question, though a number have suggested that it is the guardian’s choice that matters.”  One such case is U.S. v. Arkansas, in which a Federal Judge, pointing to the strong support of the residents families and guardians of continued placement at Conway Developmental Center (and opposition to community placement), dismissed the Department of Justice’s claims that residents of Conway were “unjustifiably institutionalized”:

• “All or nearly all of those residents have parents or guardians who have the power to assert the legal rights of their children or wards. Those parents and guardians, so far as the record shows, oppose the claims of the United States.” [U.S. v Arkansas, 794 F.Supp.2d 935 (E.D. Ark. 2011) at http://vor.net/images/ArkansasDecision.pdf].

Likewise, in People First of Tennessee v. Clover Bottom Developmental Center, the Court considered the right of individuals to reject a community placement. Noting that the “intersection of citizen choice and the ADA was addressed by the Supreme Court in Olmstead v. L.C.,” the Court addressed whose choice mattered by quoting an “eloquent” argument in a brief submitted by the Parent Guardian Association:

• “’Conservators [and guardians] - who have the longest and most meaningful relationship with their loved ones and the greatest investment in their well-being - are in the best position, after considering the recommendations of professionals and any other relevant facts, to assess the risks and exposure of the less protective environment of community settings against any benefits community settings may provide for that particular individual and to make an informed decision as to whether to exercise the disabled person’s right on his/her behalf to decline community placement.’” [People First of Tennessee v. Clover Bottom Developmental Center, 753 F.Supp.2d 701, 711 (2010) (quoting PGA)].

In receiving petitions for intervention submitted by families and guardians on behalf of their family members with profound developmental disabilities, federal courts have been accepting of their role in representing the interests of their family members and wards [see e.g., Ligas v. Maram, No. 05 C 4331, 2010 WL 1418583 (N.D. Ill. Apr. 7, 2010); Benjamin v. Department of Public Welfare, 701 F.3d 938 (3d Cir. 2012); and United States v. Virginia, 282 F.R.D. 403 (E.D. Va., 2012)]; and families and guardians are allowed to initiate lawsuits on behalf of their family members and wards with I/DD (see e.g., Olmstead, 527 U.S. 581 (plaintiffs, individuals with cognitive disabilities, were represented by a guardian ad litem; and Sciarrillo, et al. v. Christie, et al. (2013) (on behalf of 35 individuals with I/DD, all represented by family members and guardians).

More recently, in January 2014, the Centers for Medicare and Medicaid Services released its final Home and Community Based Services (HCBS) regulation that defines the settings in which people with I/DD can receive Medicaid-funded HCBS. The regulation places the individual with a disability at the center of the person-centered planning process, allowing for the reality that many people with I/DD are limited in their ability to make or communicate decisions for themselves or to exercise their rights on their own behalf and for whom legal guardianship may be necessary:

• “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.” [79 Fed. Reg. 2996 (January 16, 2014); see also, 42 C.F. R. 441.735 (a) (In this subpart, the term individual's representative means, with respect to an individual being evaluated for, assessed regarding, or receiving State plan HCBS, the following: (a) The individual's legal guardian or other person who is authorized under State law to represent the individual for the purpose of making decisions related to the person's care or well-being. In instances where state law confers decision-making authority to the individual representative, the individual will lead the service planning process to the extent possible.]

Conclusions

The role of guardianship is increasingly under attack. Although initiatives to promote self-determination, person-centered planning, and self-advocacy encourage personal decision-making by the individual with a disability, they do not override the authority of legal guardians to make determinations authorized by state courts in guardianship proceedings, despite claims to the contrary by some disability advocates. Blanket assertions that all individuals with disabilities are capable of making all decisions for themselves, regardless of their level of cognitive disability, are not supported by reality. As a result of discouraging the use of guardianship, some individuals are exposed to the risk for abuse, neglect, and exploitation that guardianship is designed and intended to prevent.

“Supported Decision-Making” is another initiative that purports to replace the need for guardianship with less formal supports. As a replacement for guardianship for people who have cognitive disabilities that impair their ability to make decisions, it could expose vulnerable individuals to the risk of having decisions made for them by agency personnel whose own convenience and interests may conflict with the best interests of the individual.

In a recent blog, Aaron Bishop, the Commissioner of the Administration on Developmental Disabilities, promoted supported decision-making, “a process of working with the person to identify where help is needed and devising an approach for providing that help.” Regarding guardianship he writes, “[t]he trouble with guardianship is that it is a legal process.”

In fact, it is the legal process that protects an individual from unnecessary guardianship and from abusive guardians. Legal guardians are charged by a court to advance the individuals’, not the guardians’, best interests. Failure to do so is cause for removal.  In court filings and actual decision-making, the guardian and individual are considered one and the same, with aligned, not divergent interests.

Federal law has consistently upheld the right of service choice and supports the important decision-making role that families and legal guardians play in supporting their individuals with I/DD. Olmstead certainly did not change that.

For more information, please contact:

Jill Barker, VOR Officer
Chair, Issues Oversight Committee
jillrbarker@sbcglobal.net

Julie Huso, VOR Executive Director
jhuso@vor.net

Together for Choice Conference, October 21 - 23, 2015

Together for Choice

October 21 - 23, 2015
Misericordia
6300 N. Ridge
Chicago, IL 60660

Wednesday, October 21, Loyola University, Water Tower Campus
6 - 9pm    Networking Dinner * Kasbeer Hall, Corboy Law Center
                25 E. Pearson, Chicago, IL 60611

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Thursday, October 22, Misericordia Heart of Mercy Campus
7:30am    Registration and Continental Breakfast

AM speakers and events:  

• Welcome Address: Sr. Rosemary Connelly, RSM
  The Historical Challenge: One Size Does Not Fit All 
• Bill Choslovsky and Scott Mendel, Olmstead/Ligas/ADA Identifying Aspects that Support Choice
• Tours of Misericordia campus

PM speakers and events: 

• David and Susan Axelrod, Keynote Speakers 
• Mark Olson, When Regulations and Policy Collide with Choice 
• Sharing and Promoting Great Models and Best Practices
• Synthesizing of Information - Next Steps
• Cocktail Reception and Conference Dinner at Misericordia 
• Self Advocates: Voices for Choice discussion

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Friday, October 23, Misericordia Heart of Mercy Campus

• 8am Check in and Continental Breakfast 
• Coalition for Community Choice Fall Meeting for Members

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 See the Conference Flyer for more information on the speakers, the Coalition for Community Choice, and registration

Clarification of the HCBS rule from CMS

In Memory of Lewis, the garden store cat

The federal Centers for Medicare and Medicaid Services (CMS) issued a rule in January 2014 that attempts to define the settings in which people with developmental and other disabilities can receive Home and Community-Based Services (HCBS). HCBS are paid for with Medicaid funds under Medicaid waiver and state plan programs. In Michigan, this rule applies to Medicaid Waivers that include the Habilitation Supports Waiver (HSW) for people with DD and the Children’s Waiver Program (CWP). The more generally available CMS-approved state plan services and other programs for people who are elderly or have physical or mental disabilities are also covered by the rule.

According to a Fact Sheet on the HCB settings rule, “the changes will …maximize the opportunities for participants in HCBS programs to have access to the benefits of community living and to receive services in the most integrated setting and will effectuate the law’s intention for Medicaid HCBS to provide alternatives to services provided in institutions.”

People with disabilities and their families should be forewarned that much of what they hear about the rule may not be what the rule actually says or how the CMS interprets it. The rule is confusing, however, and lends itself to the kind of controversy it has been generating. It needs fixing, but for now this is what we have to live with.
 
Some alarming statements have been made about what the rule means for people living and receiving services in congregate settings where more than a  few people with disabilities are served together. The rule does not define the term “congregate” or "community" nor does it give a magic number at which point CMS believes that people with disabilities associating with one another are in danger of losing their civil rights. How the rule is being interpreted varies widely. 

At a Waiver Conference sponsored by the Michigan Association of Community Health Boards (MACMHB) in November 2014, the person presiding over a session on the detailed requirements of the new rule gave her opinion that by the time the rule is fully implemented in March 2019, congregate settings will no longer be funded by Medicaid because they will not meet the requirement to integrate people with disabilities into the community. The federal CMS interpretation of its own rule is different from that given at the Waiver Conference.

Most people with disabilities and their families welcome changes that call for better enforcement of rights that are already in place and improvements in conditions that make life better for people with disabilities, but the new rule could cause unnecessary disruption and hardship, depending on how it is interpreted. Although the rule purports to be the fulfillment of the Americans with Disabilities Act and its interpretation by the Supreme Court in the Olmstead decision, that is a dubious claim. 

The HCBS rule is being interpreted by many disability advocates as a requirement for states to impose on people with disabilities and their families the ideology of Full Inclusion, the idea that everyone can and should be fully integrated into the community (whatever that means), regardless of the severity or nature of a person’s disability; anything separate or different, no matter how necessary it is to the comfort and survival of the person with a disability, is considered to be inherently isolating and segregating.  The adoption of this interpretation of the rule by the state, could limit individual choice and diminish the quality of services available for a population of people with widely diverse needs.

There are some things in the rule and the CMS interpretation that can mitigate the potential harm to people in programs under the most scrutiny, including programs or residential care provided in congregate settings. In this document that includes “Questions and Answers Regarding Home and Community-Based Settings”, the CMS sets out some of the principles in implementing the HCBS rule. READ THE DOCUMENT. I have selected some of the things I think are important to know, but you may pick up on other parts that are more important to you:


Public Notice and Comments

The first part of this document deals with Public Notice and Comments. This link to HCBSAdvocacy.org provides information on due dates for comments, state documents, and other information. A few of the links at this Website are incorrect or don’t work, but overall, it seems to be the best source of information and the easiest Website to use. Another source is the Michigan Department of Community Health Website.

Home and Community-Based (HCB) Settings - General

Q. #3: Does the HCB setting requirement apply to an enrollee’s private home or the relative’s home in which an enrollee resides?
A. The regulations allow states to presume the enrollee’s private home or the relative’s home in which the enrollee resides meet the requirements of HCB settings. … While a private home may afford the individual a home-like setting, the person-centered plan and provision of appropriate services that support access to the greater community are critical components to ensure community integration, especially for an individual with limited social skills.

Q.#4: Is there a minimum number of residential settings that must be offered to an individual?
A. …an individual must be able to select among setting options that include non-disability-specific settings and an option for a private unit in a residential setting. The individual’s person-centered plan should document options …considered…based on the individual’s needs, preferences, and for residential settings, resources available for room and board.

Q. #6: What is the meaning of “non-disability-specific settings”? does this requirement mean that the options must include settings in which other individuals with similar disabilities do not reside or receive services and support?
A. “Non-disability-specific” …means that among the options available, the individual must have the option to select a setting that is not limited to people with the same or similar types of disabilities….People may receive services with other people who have either the same or similar disabilities, but must have the option to be served in a setting that is not exclusive to people with the same or similar disabilities.

Q. #7: What is the meaning of a “private unit in a residential setting?” Does this mean that an individual must be afforded the option of a private bedroom regardless of the individual’s financial resources to pay for room and board?
A. …The regulatory requirement acknowledges that an individual may need to share a room due to the financial means available to pay for room and board or may choose to share a room for other reasons. However, when a room is shared, the individual should have a choice in arranging for a roommate.

HCBS Settings - Residential

Q. #1: Are settings on the grounds of or adjacent to “private” institutions considered not to be home and community-based (HCB)?
A. It depends. [Such settings] are not automatically presumed to have the characteristics of an institution. However, if the setting isolates the individual from the broader community or otherwise has the characteristics of an institution or fails to meet the characteristics of a home and community-based setting, the setting would not be considered to be compliant with the regulation….A state’s assessment of settings that isolate should be informed by the public comments received prior to submission of the transition plans. Also, states may elect to adopt more stringent settings characteristics that would not allow a setting to be on the grounds of a private institution….

[Comment: Let’s hope that the comments of the individual’s and families who are directly affected by the state’s assessment are given more weight than comments from people who have little direct knowledge of the setting in question nor any stake in the assessment process and are driven primarily by their own ideology of where people with disabilities should live.]

Q. #2: Must the individual be given a key to his or her bedroom door and be permitted to carry it outside the residence? What types of staff or caregivers would not be considered appropriate to have keys to and individual’s bedroom?…
A. Individuals should have access to their homes at all times unless appropriate limitations have been determined and justified in the person-centered plan…[There are conditions under which the requirements of the rule can be modified depending on the individual’s assessed need for something different.]

Q. #5: Do the [HCB] requirements address the number of individuals living in a residential HCB setting?
A. No. While size may impact the ability or likelihood of a setting to meet the HCB settings requirements, the regulation does not specify size…The HCB rule defines the minimum qualities for a HCB setting as experienced by the individual; states may set a higher threshold for HCB settings than required by the regulation, including the option to establish size restrictions and limitations.

HCB Settings-Non-Residential

Q. #1: Are settings on the grounds of or adjacent to “private” institutions considered not to be home and community-based (HCB)?
A. It depends. [Such settings] are not automatically presumed to have the characteristics of an institution. However, if the setting isolates the individual from the broader community or otherwise has the characteristics of an institution or fails to meet the characteristics of a home a [HCB] setting, the setting would not be considered to be compliant with the regulation…
 
Q. #4: Does the regulation prohibit facility-based or site-based settings?
A. No. The regulation requires that all settings, including facility- or site-based settings, must demonstrate the qualities of HCB settings, ensure the individual’s experience is HCB and not institutional in nature, and does not isolate the individual from the broader community…

Q. #5: do the regulations prohibit individuals from receiving pre-vocational services in a facility-based setting such as a sheltered workshop?
A. No. …a state could allow pre-vocational services delivered in facility-based settings that encourage interaction with the general public (for example, through interaction with customers in a retail setting)….

Q. #6: Will CMS allow dementia-specific adult day care centers?
A. the HCBS regulations do not prohibit disability-specific settings: as with all [HCB] settings …, the setting must meet the requirements of the regulation, such as ensuring the setting chosen by the individual is integrated in and supports full access of individuals receiving Medicaid HCBS to, the greater community, that individual’s rights of privacy, dignity and respect and freedom from coercion and restraint are respected, etc. …

Q. #9: If a state determines that a current HCB setting is not compliant with the new regulation, does it have to stop providing services in that setting immediately?
A. No. …the state has until March 2019 to bring its HCBS programs into compliance with the rule, consistent with its State Transition Plan. States can claim federal matching funds for these services during the transition period.

HCB Settings - Restrictions

Q. #2: What, if any, restrictions on an individual’s choice of roommates, visitors or with whom to interact (e.g., when there is documented history of abuse or exploitation by another individual) are permissible?
A. An individual’s rights, including but not limited to roommates, visitors, or with whom to interact, must be addressed as part of the person-centered planning process and documented in the person-centered plan. Any restrictions on individual choice must be focused on the health and welfare of the individual and the consideration of risk mitigation strategies. The restriction, if it is determined necessary and appropriate in accordance with the specifications in the rule, must be documented in the person-centered plan, and the individual must provide informed consent for the restriction.

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States have a great deal of discretion in the services they provide to Medicaid beneficiaries under state plans and waiver programs. Assuming that the federal HCBS rule remains in its present form, the action right now and probably for the next 5 years will be at the state level. Active participation by people with disabilities and their families is the best way to assure that the state will provide a full array of services and choice to people with disabilities.

Also, see sections of the HCBS rule that recognize the authority of court-appointed guardians to make decisions on behalf of their family member or ward.