Autism, Neurodiversity, and Autistic Self-Advocates

This is an interview by Shannon Penrod of Autism Live, an interactive Web show, with Jonathan Mitchell, a blogger at Autism's Gadfly. Mitchell, who is himself autistic, does not share the popular belief among many autistic self-advocates in the neurodiversity movement. Neurodiversity is the belief that autism is a normal variation of human behavior and should be accepted as a social category on a par with gender, ethnicity, sexual orientation and disability status. 

As Mitchell explains in this interview, he believes that his autism is a real disability and has greatly affected his ability to work and maintain social relationships. He has been attacked, at times, by other self-advocates who accuse him of being motivated by self-hatred and in betraying the cause of the self-advocacy movement.

Connecticut: Southbury Training School seen by inclusion advocate in a new light

Micaela Connery is an inclusion advocate and a Master in Public Policy Candidate at the Harvard Kennedy School focusing on disability, inclusion, and community development. She writes for the Huffington Post and has written many interesting articles on disability issues.

In a recent article, she writes about her visit to the Southbury Training School in Southbury, Connecticut. Her experience of Southbury was nothing like what she expected. She warns other inclusion advocates not to “freak out”. After seeing the facility for herself, she reveals that “it wasn’t horrible!”

The Southbury Training School is an Intermediate Care Facility and home to around 300 people with severe to profound intellectual and other disabilities. It is, in fact, an institution, but the families of the residents do not like the way that term is used as a perjorative.  The families express how they feel about it on their Website: “STS is not an Institution - It’s a Solution”, referring to the many ways that the resources at Southbury could be expanded and shared with the community for others with disabilities and used as a model of caring for people who are the most difficult to serve appropriately.
 
Here are excerpts from Micaela Connery’s Huffington Post article:

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Disability Housing: Institutional Avoidance
by Micaela Connery
July 22, 2015
   
You can't live in Connecticut and work on anything related to disability services and not know about Southbury Training School. While addressing the concerns of a lack of affordable and adequate housing for people with disabilities across the state, Southbury has been the topic of numerous discussions (and disagreement). Yet, I was struck by how few policymakers, advocates, parents, and individuals (almost none) had actually visited the grounds. So, I decided to take a trip.

I didn't know what to expect. …When you meet older individuals who work in disability services, they often refer to a period (almost a turning-point) of deinstitutionalization. But few acknowledge this period of deinstitutionalization is a period we're still in the thick of. Institutions aren't a failure of the past, they're a reality of the present.
 
... I wasn't expecting to encounter a music class, a dental clinic, or an accessible fitness facility. I wasn't expecting staff who had been there for thirty years and who could recall journeying with residents (or "clients") through all the phases of their life from moving in, sharing grief in the loss of loved ones, to the challenges of aging. I wasn't expecting rolling hills or a remarkable indoor mural painted by a doctor who works in the facility during his free time. I wasn't expecting to meet residents who seemed quite happy in their daily life. I wasn't expecting photos on the walls and paintings done by residents lining the corridors.
 
... my whole understanding of the idea of "institutional" was defined by bad things not to do. My perception was based on this idea of avoiding being institutional. It was about the "de" in deinstitutionalization. It was all about what we needed to remove.
 
…Based on the avoidance principal, Southbury seems to have achieved much of the "de" in deinstitutionalization. And, it wasn't all that different from other group homes or residences for people with disabilities I've visited in my life. Yes, something about Southbury didn't feel right to me, but it also didn't have the features that I knew to be wrong.

...Perhaps where we're missing the boat is that we've spent so much time preoccupied with deinstitutionalization that we've failed to focus (or even hone in) on what it means to create communities, build life-giving places to live and thrive, and what we can add to the life of someone with a disability to make it a happy one…

…We know what we don't want to do. But, do we know what we do want to do? We mostly understand the process of deinstitutionalization. Now we need to figure out the nuances of true community creation.

Read the full article here...

The Revolving Door : Former Head of CMS Becomes Top Lobbyist for Health Insurers

According to an article in The Hill, "Former ObamaCare official becomes top lobbyist for insurers" by Sarah Ferris, 7/15/15,  the former head of the Centers for Medicare and Medicaid Services (CMS), Marilyn Tavenner, has become the president and CEO of America's Health Insurance Plans (AHIP). AHIP is a lobbying group for the Health Insurance industry. 

Tavenner announced in January 2015 that she would be leaving CMS.

CMS is the agency under the U.S. Department of Health and Human Services that regulates Medicare and Medicaid. In my rudimentary knowledge of insurance regulation, it appears  the insurance industry is mostly regulated by the states, but the regulation of Medicare and Medicaid under the Affordable Care Act has had a large impact on the industry. Tavenner's appointment should be a great advantage to the health insurance business. 

CMS is also the agency that issued the rule on Home and Community-Based settings in January 2014.

This happens all the time in Washington, D.C., so it is no surprise that Tavenner switched sides from regulator to the regulated relatively quickly. That this is perfectly legal and accepted within Washington, does not make it any less questionable to the rest of the country. Who are the people making up the rules? Are they working for us or are they angling for their next job? Maybe a little of both?

The Department of Health and Human Services announced last week that it was appointing Andy Slavitt, who currently serves as acting administrator, to assume Tavenner’s former post.

Delaware: Exclusion, Rather than Inclusion, marks ADA 25th Anniversary

This story was covered in an article at delawareonline by James Fisher on July 19, 2015.

Disability advocates from Families Speaking Up! were denied a display table at at an event celebrating the 25th anniversary of the Americans with Disabilities Act in Dover Delaware on July 18, 2015. When the group then arranged to share table space with Special Olympics, and attempted to display a sign from Families Speaking Up!, they were approached by Dover police officers with instructions to put the sign away. An officer said Families Speaking Up! had a “difference of opinion” with the event’s organizers, according to a witness at the incident.

Families Speaking Up! is a non-partisan, grass roots group of people with intellectual and developmental disabilities (ID/DD), their families, friends, and caregivers.  They work to ensure that all voices are heard in the debate over  where people with Intellectual and Developmental Disabilties should live and work.  They have opposed the interpretation of a new federal rule by some federally-funded advocates that would eliminate congregate settings for people with severe disabilities, regardless of individual need and preference for where services should be provided.  Programs that are at risk of being eliminated are those that serve individuals with the most severe disabilities who are the least able to speak up for themselves.

Micki Edelsohn, from FSU and the founder of Homes for Life Foundation in Wilmington, said the group was  denied space under the main tent for the ADA-focused event. They were told to set up a booth more than a block away, out of earshot of the main speakers.

The Dover ADA celebration was organized jointly by several Delaware groups and government-chartered councils, including the Department of Health and Social Services, the Developmental Disabilities Council, the Department of Transportation, and the State Council for Persons with Disabilities. Sponsors of the event said FSU was denied a table because it was reserved for another group. They also denied sending police officers to tell FSU to take its sign down because there was a difference of opinion with the sponsors. They said that was the police officer's fault.

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A conference sponsored by Homes for Life Foundation in October 2014 to showcase innovative housing ideas, including planned communities for people with disabilities, stirred up controversy among a few advocates at the event. Daniese McMullin-Powell, the Chair of the Delaware State Council for Persons with Disabilities, said to a reporter that allowing individuals to use funding for these innovative approaches, “…would suck up every drop of Medicaid money there is...If they want to choose congregate living, then let CMS use only nursing home money. Don't suck it all up because you want to live in summer camp forever.'"

Dr. Lanny Edelsohn, a neurologist who treats many patients with autism and other central nervous system disorders, and the co-founder of Homes for Life Foundation with his wife Micki,  was startled by McMullin-Powell's remarks and responded in an opinion piece published at delawareonline on 11/4/14. He was especially offended by McMullin-Powell's characterization of the conference attendees, comparing the meeting to a "segregationist" meeting of "rich white people." Dr. Edelsohn said the conference was free and "the attendees were clearly diverse and a tax return was not a requirement for admission." But he was grateful that McMullin-Powell revealed, "that at the end of the day, this battle over the direction of the Medicaid waiver, while superficially clothed in the appealing rhetoric of 'rights,' is, like many things, actually about money."

The Delaware State Council for People with Disabilities was a sponsor of the ADA Celebration on 7/18/2015.

Learn more about the federal rule on Home and Community-Based Services

In January 2014, the federal agency that regulates Medicaid (CMS), issued a new rule for the funding of Home and Community-Based Services. The rule may help some people with disabilities obtain appropriate services in settings more to their liking, but it has the potential of unnecessarily displacing many others from residential and service settings that work for them but are deemed not sufficiently integrated into “the community” despite the needs of the individual.

The best place to find information about the HCBS settings rule is at the HCBS Advocacy Website. All federal documents relating to the rule can be found under “Learn About the New Rules”. State Transition Plans, opportunities for public comment, and other state-related topics are covered under “State Resources”.

It is up to individual states to determine how they are going to assess settings for compliance with the new rule. This makes it especially important for people affected by the rule to follow the state’s progress in implementation and take advantage of opportunities to comment.

What else do you need to know?

• If a setting is found to be out of compliance with the new rule, there must be an opportunity to bring it into compliance. Even if that is not possible, HCBS funding may continue until March of 2019.
• There are no specific requirements in the rule that mandate a maximum size for settings or that prohibit funding of congregate settings (more than 3 people with disabilities served together) or that prohibit a setting from serving all or primarily people with disabilities. Certain settings described in the rule will come under “heightened scrutiny” for compliance, but there is no outright prohibition of them.
• The rule does not change the authority of court-appointed guardians to make decisions for their wards.
• You may contact CMS directly through this email address for clarifications of the rule or to report problems with implementation. That may include misinformation that is being distributed by state or local agencies or federally-funded advocacy organizations, a lack of transparency by the state, and insufficient opportunities for public comment.

See The DD News Blog for posts related to the HCBS rule

The Olmstead Decision Has Been Misinterpreted

This is from VOR, a national organization that advocates for high quality care and human rights for all people with Intellectual and Developmental Disabilities (I/DD). Underpinning that advocacy is a respect for diversity of need and individual choice. 

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July 7, 2015

By Jill Barker, David Hart, and Tamie Hopp

The Olmstead decision, which interprets the Americans with Disabilities Act, is so clear that persistent misinterpretation by federal agencies can only be described as purposeful.

Introduction

The 25th Anniversary of the Americans with Disabilities Act (ADA) on July 26, 2015 offers an opportunity to set the record straight about what the landmark Supreme Court decision, Olmstead v. L.C., 527 U.S. 581 (1999),  actually says about the ADA’s “integration regulation.” 

The ADA’s “integration regulation” states:

“a public entity must administer services, programs, and activities in the most integrated, least restrictive setting appropriate to the needs of qualified individuals with disabilities.” [28 C.F.R. § 35.130(d)].

The Olmstead Court considered whether the ADA’s prohibition of discrimination by a public entity required “placement of persons with mental disabilities in community settings rather than in institutions.” (Olmstead at 587)

The Court’s answer: A “qualified yes.” (Id., emphasis added)

Since 1999, however, federal agencies and some advocacy organizations have lost sight of the individual when considering the rights established by the Olmstead decision. A thoughtful decision which balanced individual need, choice, and the state’s resources against a statute that also required consideration of individual needs, has been discarded for an interpretation that the ADA allows only for community placement. 

In sharp contrast, both the Olmstead decision and the ADA eschew absolutes. Neither support only community care or only institutional care:

[O]ne conclusion seems plain: some disabled individuals can benefit from community placement, and some may not. While all disabled are covered by the ADA, different remedies are recognized by the statute for different degrees of disability.” [Brief of VOR et al., as Amici Curiae, in Olmstead v. L.C., at 6 (February 3, 1999)]
 
The Olmstead decision and the law are so clear that persistent misinterpretation by federal agencies can only be described as purposeful.

The History of the Olmstead Decision: Lois Curtis, Elaine Wilson, and VOR

In 1995, two women, Lois Curtis and Elaine Wilson, courageously pursued their right under the ADA and its integration regulation to receive person-centered services and supports in the most integrated setting appropriate to their individualized needs. Their lawsuit against the State of Georgia, Olmstead v. L.C., made it all the way to the Supreme Court, and in 1999, culminated into what is now recognized as the landmark decision interpreting the ADA’s Title II “integration regulation.”

VOR is a national, nonprofit advocacy organization that has for 32 years supported the right of individuals with intellectual and developmental disabilities (I/DD) to receive services and supports according to their individual choice and need, regardless of setting. VOR and 141 of its affiliates and supporting organizations stood by Lois and Elaine, filing an Amicus Curiae brief in support of their right to receive community-based supports, while also arguing that the ADA does not mandate a singular placement option – the community – for all citizens with disabilities. Instead, VOR argued that the ADA’s protections extended to individuals with “degrees of disability” who are entitled to receive services, supports and accommodations according to what is most “appropriate to the needs of the individual,” which may sometimes be an institution.

Quoting VOR’s brief, the Court agreed:
 
“‘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 Court was clear that the ADA’s integration regulation does not mandate that people with disabilities be forced from facility-based care (“institutions”) when doing so was not appropriate to individual needs or contrary to individual choice.

The Court found that Lois and Elaine had suffered discrimination under the ADA, pointing to Lois and Elaine’s choices, their treating professionals opinion that for them community placement was appropriate factored directly into the Court’s holding, and the fact that the State had agreed to provide such services. Accordingly, the Court held community placement is only required (not always required), and institutionalization is only “unjustified,” when -

“[a] the State’s treatment professionals have determined that community placement is appropriate, [b] the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and [c] the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities. Olmstead, 527 U.S. at 587 (emphasis added). 
 
The Court expressly recognized an ongoing need for facility-based care (“institutional” care) for some individuals with disabilities, stating –

“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.” Id. at 601-602.
 
Purposeful Misinterpretation
 
Olmstead is often incorrectly referred to as a community-only / deinstitutionalization mandate by disability advocates. Federal agencies, such as the Department of Justice (DOJ), the Administration on Intellectual and Developmental Disabilities (AIDD), the Centers for Medicare & Medicaid Services (CMS), and the National Council on Disability (NCD) perpetuate this misinterpretation of the Olmstead decision and pursue forced deinstitutionalization.

NCD, an agency within the U.S. Department of Health and Human Services, has published “Deinstitutionalization: Unfinished business” which encourages the closure and displacement of individuals with profound disabilities from homes of four or more residents, without regard for individual choice and need and contrary to Olmstead.

AIDD, within HHS, has likewise denigrated a proven system of facility-based care through lobbying, class action lawsuits and other tactics in support of forced deinstitutionalization, aimed at evicting the most vulnerable people with I/DD from their facility homes, under the guise of “integration” for all, contrary to Olmstead.

CMS finalized a new regulation that defines “community” settings for the purpose of receiving Medicaid Home and Community-Based Services (HCBS) funding. Although the rule does not require the elimination of congregate settings for providing residential and other services to people with I/DD, it certainly encourages such closures. For people with the most severe disabilities and highest needs, this may very well prove costly to states, if they maintain the same level of service for these individuals in non-congregate settings. Instead, the historical and more likely reaction by cost-conscious states will be to reduce services by eliminating congregate settings based on the allegation that the need for them has decreased when it has not, or reducing services by eliminating congregate settings just to avoid having to justify them to CMS and ideologically motivated advocacy groups, regardless of the needs and preferences of the individuals involved. Closing community congregate settings in response to the new rule will add to the existing gap in services left by historic deinstitutionalization. As a result, the whole system of care is likely to be undermined in the name of inclusion and integration, and contrary to Olmstead.

The DOJ’s Civil Rights Division is charged with enforcing “federal statutes prohibiting discrimination on the basis of race, color, sex, disability, religion, familial status and national origin,” including the ADA. Its technical assistance website on Olmstead is titled:

    “Olmstead: Community Integration for Everyone”

These are not mere words. DOJ’s Olmstead enforcement actions bear out an interpretation of Olmstead that mandates “community integration for everyone” by pursuing forced deinstitutionalization, without any regard to the choice or needs of affected individuals, contrary to Olmstead. Consider U.S. v. Arkansas in which Federal Judge J. Leon Holmes in the first paragraph of his decision dismissing DOJ’s claims wrote:

Most lawsuits are brought by persons who believe that their rights have been violated. Not this one. The Civil Rights Division of the Department of Justice brings this action on behalf of the United States of America against the State of Arkansas and four state officials in their official capacities alleging that practices at Conway Human Development Center violate the rights of its residents guaranteed by the Fourteenth Amendment, the Americans with Disabilities Act, and the Individuals with Disabilities Education Act. 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. Thus, the United States is in the odd position of asserting that certain persons’ rights have been and are being violated while those persons—through their parents and guardians—disagree. U.S. v. Arkansas, 4:09-cv-33 ( 2011, E.D. Ark.) (emphasis added).

Over 150 media reports in more than 30 states in the past two decades reveal systemic concerns in small settings for people with intellectual and developmental disabilities (I/DD), including deaths, abuse, neglect, isolation, and financial malfeasance.

Across the country, thousands of fragile citizens have needlessly died in community settings as advocates aggressively pursued community integration without regard to the preparedness of these settings to receive fragile individuals, even while proponents began to acknowledge the predictable problems. As noted Samuel Bagenstos, former Principal Deputy Assistant Attorney General in DOJ’s Civil Rights Division and a key litigator in deinstitutionalization cases –

“It should not be surprising that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.”[“The Past and Future of Deinstitutionalization Litigation,” 34 Cardoza L. Rev. 1, 21 (2012)].

More recently dramatic increases in mortality of individuals with I/DD in community settings has been widely publicized in Georgia and Virginia, two states which are in the process of implementing DOJ Olmstead settlements. In Georgia, there have been nearly 500 deaths in both 2013 and 2014 of individuals with I/DD in community settings, including 62 individuals who transferred from facility-based care per settlement requirements. In Virginia, the rate of mortality of those individuals with I/DD who transferred from facility care per settlement terms is double that of facility-based individuals.

Conclusion

Like the integration regulation itself, the Supreme Court’s decision requires consideration of an individual’s needs, while also holding that individual choice also matters.

However, don’t take our word for it.  Read the Olmstead decision.

There are tragic outcomes that lie in the wake of forced deinstitutionalization, which since 1999 has been improperly pursued in Olmstead’s name.

Lost in pursuit of the “integration” ideal is concern for the individual. Person-centered planning, which is held up as the ideal by the government, advocates, and nonprofit organizations alike, is short-changed by system change advocacy to eliminate specialized care options for those who need it, which is exactly what the Olmstead court cautioned against. Instead, Olmstead and the ADA reinforce the right of choice, requiring a level of integration that meets the needs of the individual.  This right of choice is preserved only if we maintain a full range of options to meet the full range of needs for a diverse population.

About the Authors

Jill Barker is the First Vice President of VOR. She has two sons with profound intellectual and developmental disabilities living in a community setting in Michigan. David Hart, from Massachusetts, is the Chair of VOR’s Legislative Committee. Tamie Hopp, from South Dakota, is the former VOR Director of Government Relations & Advocacy and currently a volunteer for VOR. More information can be found at www.vor.net.

Washtenaw ACA on rate reductions for self-determination direct care workers

On July 1, 2015, Kathy Homan, President and CEO of Washtenaw Association for Community Advocacy, commented to the Washtenaw County Board of Commissioners regarding the decision by the Washtenaw Community Health Organization (WCHO) to reduce the hourly rate of pay for direct care workers under self-determination living arrangements:


“In May of this year, CSTS reduced the hourly rate of pay for Self-Determination budgets and removed all additional line item allowances from all [Medicaid] waiver recipients using self-determination. This reduction has decreased, if not ceased, the ability for people with developmental disabilities to be included in their community. The rate reduction was done with no input from the community and in violation of The Centers for Medicare and Medicaid (CMS) Budget Authority Process in the Habilitation Supports Waiver application, as stated in the letter from Michigan Department of Health and Human Services that was sent to the WCHO on June 4, 2015. I spoke with CMS after receiving a copy of this letter and confirmed that the violation to the Authority Process also included all other Home and Community-Based Service Waivers. This same letter stated that 'As a result, we are requesting that the WCHO reverse this decision immediately and retroactively to May 15, 2015 for all SD and choice voucher arrangements effected by this action.'

"The WCHO’s response to MDHHS, dated June 15, 2015 states '1. In coordination with the Washtenaw CSTS Clinical Team, we are collaborating with the individual and/or guardian to review the Individual Plan of Service (IPOS) and the Self-Determination budget. Upon review with all parties, the IPOS will be reviewed and signed off on by the individual and/or guardian and the CMHSP.' '2. Through the completion and signature on the updated IPOS, each individual and/or guardian will be provided Adequate Notice of Rights.' It also states that the WCHO will attempt to negotiation a solution locally. Should a solution become unattainable, WCHO will ensure individuals are provided assistance with filing a Medicaid Fair Hearing. We believe the WCHO response does not comply with the letter from MDHHS and is considered by some families as a bullying tactic.

"Self-determination is a policy through the public mental health system that is to be made available to any person receiving services through PIHPs and CMHSPs. The five principles of self-determination are Freedom. . . to plan a real life, Authority. . . over your resources, Support. . . . for building a life in your community, Responsibility. . . to the wise use of funds, and Confirmation…of the important roles that individuals must play in a designing systems.
 
"In October of this year, the Washtenaw County Board of Commissioners will have more oversight for CSTS. We ask that you include people with developmental disabilities and their families on the Community Mental Health Board so nothing again is ever decided about them without them." [emphasis added]

[The MDHHS is the Michigan Department of Health and Human Services, a new department that merges the old Department of Community Health and the Department of Human Services.]

Documentary on Workshops for DD going out of business : "A Whole Lott More"

Trailer for "A Whole Lott More"

This is a documentary from 2013 that was shown on Link TV in Detroit today. It is about workshops for people with DD in Toledo, Ohio, being forced out of business by a bad economy, a slow and inefficient DD service system that controls the workshops, and a philosophy that everyone can work in community employment. The people who suffer most, the ones who work in the workshops, seem the least likely to be able to bounce back from unexpected closures and the loss of relationships with their employers and fellow workers. "I wish we had a miracle," says one of the workers, "but they don't happen to people like us."