Advocacy done right: Irene Tanzman on VOR's 2024 Legislative Initiative

Irene Tanzman is the mother of a son with severe autism from Massachusetts:

"In this video, I describe the experience of the 2024 VOR (Voice of Reason) legislative initiative. I go into detail about what we did, how we were trained, and what legislation we promoted. For anyone thinking about legislative advocacy for individuals with severe/profound intellectual disabilities and/or severe/profound autism, this is a must-see video. The VOR legislative initiative is bootcamp for legislative advocates. There is no better training for legislative advocacy than experiencing the VOR legislative initiative."

VOR's 2024 Legislative Initiative was held from May 7-9, 2024. I was not able to go this year, but I share Irene's enthusiasm for the experience of meeting directly with legislators and their aides in Washington, DC. and with other family advocates, most of whom have family members with severe to profound intellectual disabilities. 

The most important message that VOR is advancing in its legislative initiative is that listening to families is of primary importance in crafting legislation and policy that serves and protects people with IDD.

You will hear Irene get into the nitty gritty of preparing to talk to legislators and how grueling and exhilarating the experience can be. Educating yourself and others is the first benefit of this advocacy, but it also instills confidence that your own experience with living with disabilities is a powerful message to legislators.

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VOR materials shared with congressional staffers during the VOR 2024 Legislative Initiative.

 

Disability Wrongs: Advocacy gone awry

This video is from ACCSES, an organization representing disability service providers including providers of work centers (sheltered workshops). On 7/25/18, the organization held a Capitol Hill Briefing in defense of a broad range of work settings for people with disabilities including work centers for people who would otherwise be unable to compete for employment. Self-advocates who participate in these work programs were scheduled to speak, but they were shouted down and the meeting disrupted by other self-advocates from disability organizations with opposing views. 

According to ACCSES, this is what happened:

“Despite what disability policy seems to indicate: People with disabilities are not a monolithic group. Rather, people with disabilities are individuals, with the same right to choose where they want to live, work, and thrive as anyone else. That basic civil right to live life with dignity and respect is being subsumed by feel-good laws that do not benefit many individuals, and advocates who support those laws over individual rights. That’s the rub. Right now, current and proposed laws and regulations, as well as policymakers, agencies, and some advocates—even those with good intentions—are putting a broad range of employment, residential, and community support options for people with disabilities at risk. In doing so, they are taking away the civil rights of individuals with disabilities.

“That was never made more clear than on July 25, 2018, when a dozen people with disabilities, some of whom work on the Capitol campus and others who traveled all the way from the middle of the country, wanted to share their stories of why their jobs matter. Instead, they were shut down by advocacy groups that crashed an ACCSES Capitol Hill briefing and frighteningly shouted over the self-advocates with disabilities who were scheduled to speak. The Capitol police had to be called, the individuals who came to speak never got to address the audience in the room. This is where current disability policy has led, not to increased opportunity and respect, but to a concerted effort to take away the civil rights of individuals with disabilities by limiting their choices. It must end. Individuals must be allowed to live, work, and thrive in settings that best meet their needs – not the needs of others.” 

The organizations taking the lead in these disruptive activities were ADAPT and NCIL, the National Council on Independent Living. They put out their own version of events on 7/25/18, “Disability Rights Groups Protest Provider Efforts to Continue the Exploitation and Isolation of People with Disabilities”.

The ACCSES briefing included support of a House bill called the "Workplace Choice and Flexibility for Individuals with Disabilities Act". You can read the bill, H.R. 5658, in less than 5 minutes and see for yourself if it has anything in it that would produce the cataclysmic results that ADAPT and NCIL are predicting. There is nothing in it that would limit or impede the opponents of the bill to receive the employment services in integrated, competitive work settings that they say they want. In the ADAPT/NCIL hyperbolic assessment of the bill, they claim that “This bill resurrects walls of exclusion by segregating people with disabilities both socially and economically, allowing service providers to keep disabled people in workplaces that are isolated from the rest of society, and to pay those workers pennies on the dollar for the value of their work.” 

In the ADAPT/NCIL version of events there is no mention of disability self-advocates and their families supporting the bill who believed they had a meaningful opportunity to express their support, only to be shouted down by other advocates from opposing advocacy organizations who claim to represent everyone with a disability. One of the ADAPT organizers, Anita Cameron, is quoted as saying, “They need to hear from disabled people, they need to hear about the lives we want to live and the communities we want to build. 28 years after the signing of the ADA it is insulting that any organization would pretend to know our needs better than we do.” This was not intended ironically, even as the demonstrators were shouting down other people with disabilities and disrupting the meeting to the extent that the police had to intervene and make arrests. 

Another well-known advocate supporting the demonstrators was Ari Ne’eman, a founder of ASAN, the Autistic Self Advocacy Network, and a former member of the National Council on Disability. He is currently an advisor to the American Civil Liberties Union on disability policy and Medicaid. He is seen sitting in the audience holding up his cell phone at 2:37 in the ACCSES video. He was covering the event by tweet, saying among other things that this was a “Historic event”. He makes no reference to others with disabilities who have opposing views to his own. 

No one deserves to be silenced by the kind of bullying displayed by the aggressive tactics of ADAPT, NCIL, and their supporters.

This whole debacle was exacerbated by disability organizations using the royal “we” when they claim to represent everyone with a disability. I found a word for it, something to add to the multitude of “isms” and other terms that get thrown around and at people who one disagrees with: Nosism. According to Wikipedia, Nosism, from the Latin nos, "we", is the practice of using the pronoun "we" to refer to oneself when expressing a personal opinion. At least “we” learned something new from this tawdry event.

Organizations supporting a full range of services and residential options: "one size does not fit all"

The following is a letter dated 4/10/18 addressed to officials at the U.S. Department of Health and Human Services from over 60 community organizations and advocates for people with developmental and intellectual disabilities. It is in response to demands from HCBSadvocacy.org, representing 20 organizations, that would force almost all adults with intellectual and developmental disabilities (I/DD) into small, dispersed residential and vocational settings. Congregate settings that serve more than three or four people with disabilities together would generally no longer be eligible for Home and Community-Based Services (HCBS) funding – whether or not those are appropriate or desired by Medicaid Waiver recipients. [Special Medicaid waivers fund Home and Community Based Services for people with developmental and other disabilities.] HCBS is regulated by the federal Centers for Medicare and Medicaid Services (CMS).

Here are the email addresses of people who received the letter, in case others wish to follow up with their own comments:

Secretary of Health and Human Services Alex Azar: Secretary@hhs.gov

Administrator Seema Verma: Seema.Verma@cms.hhs.gov

Calder Lynch: Calder.Lynch@cms.hhs.gov

Vu Ritchie: vu.ritchie@cmas.hhs.gov

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

April 10, 2018

Dear Secretary Azar, Administrator Verma and Mr. Lynch:

We are writing in response to the alarming demands for an expanded process of heightened scrutiny submitted by the Center for Public Representation and the National Health Law Program on behalf of twenty organizations (henceforth referred to as “the HCBS Advocacy Coalition”) determined to force all adults with intellectual and developmental disabilities (I/DD) into small, dispersed residential and vocational settings – whether or not those are appropriate or even desired by waiver recipients.

We applaud CMS’ desire to support adults with I/DD in community settings, and completely agree that those who want to live and work in the greater community should receive whatever services they require to succeed. However, the campaign to solely fund small, dispersed, “integrated” settings is just as dangerous, paternalistic, and ideological as the forcible institutionalization of the mid-20th century to which it responds. We reiterate, because this one point should be sufficient to end this debate, that this is an ideological crusade rather than an evidence-based agenda: although the aforementioned advocates have long maintained that “studies” show that small, dispersed settings are best for adults with I/DD, an independent review of the literature by Dr. David Mandell, ScD., Director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, found that, although “decisions about [residential] care may have the most profound effect on well-being and happiness…our decision-making regarding which types of placements to pay for and prioritize is based on values rather than data.”

Not only is there no scientific evidence behind the one-size-fits-all model of residential and vocational supports, but the lack of more intensive, structured settings for our most impaired adults has resulted in catastrophic consequences. Mandell notes that “today, media exposés of abuses in community settings rival those of psychiatric hospitals a generation before.” Recent investigations of group homes in New York, Chicago and Philadelphia found rampant abuse and neglect in small, dispersed settings that, as Mandell reports, “often are not up for the task of caring for individuals with more profound impairments.” Undoubtedly, it was his fear of exactly these outcomes that motivated Justice Anthony Kennedy to warn, in his concurring opinion to the 1999 Olmstead decision, “It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”

But this debate isn’t just about those with the most severe intellectual and developmental disabilities. Many Americans choose to live with peers in retirement, religious and ethnic communities – there’s even an “adult dorm” in Syracuse for lonely Millennials. It is only when adults with I/DD choose to live and work with their peers that opponents claim these settings are “isolating” and “segregating” – resulting in the heartbreaking irony that adults with I/DD represent the only population in this country denied the civil right to decide where and with whom they live, and that this outcome is largely due to the influence of groups allegedly concerned with preserving the rights of the disabled. It is the height of arrogance for the HCBS Advocacy Coalition to insist it knows what’s best, even as applications pile up for new projects like First Place in Arizona, which consists of 55 apartments for adults with autism, and the 97-unit The Arc Jacksonville Village in Florida. We encourage you to visit these communities, as well as others all over the country whose names and contact information we would be happy to provide.

On a practical level, the more elaborate process of heightened scrutiny demanded by the HCBS Advocacy Coalition would devour the time and funding of already stretched agencies. Almost two hundred thousand individuals with I/DD were on waiting lists for Medicaid long-term supports and services as of June 2015. [emphasis added] We need to foster a creative environment in which adults with I/DD and their families are encouraged to work with providers to develop the environments they want. What we absolutely do not need is a landscape dominated by even more bureaucratic obstacles.

Importantly, this vision is very much in line with the Final [Settings] Rule as it was originally articulated by CMS. It acknowledged that regulations should be more “outcome-oriented…rather than based solely on a setting’s location, geography, or physical characteristics.” Secretary Price and Administrator Verma similarly emphasized the need for choice in their March 14, 2017 letter to the states’ governors, in which they expressed their commitment “to a new era for the federal and state Medicaid partnership where states have more freedom to design programs that meet the spectrum of diverse needs of their Medicaid population.” They noted that the states “are in the best position to assess the unique needs of their respective Medicaid-eligible populations and to drive reforms that result in better health outcomes.”

It is in line with these priorities as articulated by your own agency – as well as by the ADA and the Olmstead decision – that we ask you to retract the contradictory guidance that stigmatized farmsteads, gated communities, clustered housing and, more generally, all disability-specific settings as “isolating.” Not only does Federal law support the right of choice, but the concept of person-centered planning on which our system of service delivery is based mandates that these important decisions be made exclusively by waiver recipients and their families, from the most expansive range of home and workplace settings possible.
We look forward to participating in this critical conversation. 

Correspondence may be addressed to Amy Lutz via email at amy@easifoundation.org or by mail to EASI Foundation, P.O. Box 351, Villanova, PA 19085. 

Best, 

Together for Choice (NV)

Autism Science Foundation (NY)

ACCSES (DC)

VOR (IL)

Autism New Jersey (NJ)

Madison House Autism Foundation (MD)

EASI Foundation: Ending Aggression and Self-Injury in the Developmentally Disabled (PA)

Bergen County United Way (NJ)

Advocates for Community Choice (MO)

Special Moms Network LLC (NY)

...and many more

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See the original 4/10/18 letter for complete information on references and the list of organizations signing on.

HCBSadvocacy.org

Olmstead Resources

The Federal Government's Quiet War Against Adults with Autism 

Legal Vulnerabilities of CMS’s Regulation of Home- and Community-Based “Settings”

Understanding Guardianship Part 1 : Facts and Data

Opposition to guardianship for people with developmental disabilities by disability rights advocates has been growing over the last twenty years as more funding becomes available for promoting alternatives to guardianship. Supported Decision-Making (SDM) is the most recent initiative that promotes “a process in which adults who need assistance with decision-making…receive the help they need and want to understand the situation and choices they face, so they can make life decisions for themselves, without the need for undue or over broad guardianship” [from “Supported Decision-Making: An Agenda for Action”, 2014, p.1]. The Federal Administration on Community Living (ACL), under the U.S.Department of Health and Human Services, has given millions of dollars in funding for multi-year projects to promote and do research on Supported Decision-Making. Among those receiving grants are the Quality Trust for Individuals with Developmental Disabilities for their National Resource Center for Supported Decision-Making and the Burton Blatt Institute at Syracuse University in New York.

While slogging through articles and reports on guardianship and its alternatives, I was struck by how little data is available on guardianship. Very few reports make distinctions between guardianships for people with severe developmental  disabilities, people with mental illness, physically incapacitated adults, and aging citizens who can no longer handle their own affairs or are affected by Alzheimer’s or other forms of dementia. To illustrate the importance of making these distinctions, my son Danny, who has been profoundly mentally and physically disabled since birth, has never accumulated property or wealth and is unlikely to be the target of unscrupulous probate attorneys who want to get their hands on his loot. Our guardianship is the best tool we have to make sure he is not taken advantage of and that his rights are protected. My mother, however, who lived to be 98 years old and had some degree of dementia by the time she died, was a good example of someone who had everything in place for my father and I to make decisions for her and could have been at greater risk of exploitation if she had been forced into a court-appointed guardianship.

Another question is, who are the guardians? It appears that the vast majority are close family members or friends of the person needing guardianship. Guardianship abuse from family members can occur, but it appears that corporate or state guardians with dozens of wards are far less likely to attend to the needs and wishes of people under guardianship. More stringent regulation of corporate and state guardians may be warranted, but family guardians may be overly burdened by too many requirements aimed at professional guardians and may not need the same kind of monitoring and supervision by the court. 

Much of the reporting on abuses in guardianship (see the National Association to Stop Guardian Abuse) is anecdotal. These anecdotes are rarely quantified to give an overall idea of the extent or causes of guardianship abuse. Although there are horrific stories about what can happen to people under guardianship, we rarely see stories about unpaid family guardians who defend their family members against agencies and individuals who, through neglect or the intentional desire to do harm or simply to save money, exploit vulnerable people with disabilities. And then there are advocacy organizations who claim to know better than the family what people need and are often the recipients of funds for projects that may conflict with the interests of the people the advocates claim to represent. 

Speaking of anecdotes, this has to do with guardianship procedures at our local Probate Court. In 1996, we filed a petition for guardianship for our son Danny. The Court appointed an attorney to represent him, ostensibly to protect his rights and to make recommendations as to his need for guardianship and whether he had any objection to my husband and I becoming his co-guardians. The attorney never called us to find out more about Danny. My husband and I finally met him in the hallway outside the courtroom 15 minutes before the hearing at which time the attorney thought I was the caseworker from Community Mental Health who would be submitting a report to the Court on Danny's condition. Near the end of the hearing, the attorney turned to Danny and asked Danny, who has never been able to talk or communicate in any specific way, if he had anything he would like to say to the Judge. Danny did not respond. Afterwards, we assume the attorney collected his $600 from the Court, the going rate for attorneys representing people who are too poor to pay attorney’s fees. There are lots of conclusions I could have drawn from this one instance of an attorney neglecting his duties, but I talked to other families who had good experiences with court-appointed attorneys who were both caring and fair.

With that said, this is a report from Michigan called the “Task Force on Guardianship and Conservatorships; Final Report, September 10, 1998”. The Task Force was created in 1996 by the State Court Administrative Office (SCAO) after news stories were published about abuses by a professional guardian in Wayne County. 25 people were appointed to the Task Force, including probate court judges, probate court registers and staff members, both houses of the Michigan Legislature, relevant executive  branch agencies, several advocacy groups, the State Bar Association, academia, and members of the probate bar.

The goals of the Task Force were to make recommendations on the following topics:

• Reduction in the use of guardianships and conservatorships;
• Guarantee of an appropriate number of qualified and concerned guardians;
• Guarantee of adequate monitoring of guardians and court operations; and
• Institution of needed standards, training, and education.

The report said that two-thirds of the probate courts did not keep a statistical record of the total number of guardianships and of the percentage of guardianships that are limited (or partial) as opposed to plenary (or full). Although the idea of the Task Force was instigated by abuse by a professional guardian, it found that the vast majority of people filing guardianship petitions were family members or close friends of the person. Guardians often had guardianship recommended to them by other agencies or professionals. 

Here are some of the recommendations of the Task Force:

To reduce the use of guardianships and conservatorships, it recommended that local resources be established to assess the need for guardianship and develop alternatives to guardianship. It also recommended that an effort be made to educate personnel in hospitals, nursing homes, and other medical or psychological personnel to emphasize presumption of competency and alternatives to guardianship.

To reduce the unnecessary appointments of guardians, the Task Force recommended collecting better screening information on court forms, requiring court-appointed attorneys to include an evaluation of the functional capacity of the potential ward, and more training for judges on cognitive and physical impairments, mental illness, and the aging process. It would have been helpful to know how the Task Force ascertained whether a guardianship was unnecessary and how many unnecessary guardianships were found, but that was not mentioned in the report. 

Recommendations on how to better manage guardianships and conservatorships included minimum ethical standards for professional guardians, compelling courts to comply with statutes and court rules, requiring annual review of accountings, and restrictions on real estate transactions involving the ward’s property. These recommendations seem obvious and it is surprising these were apparently not already implemented by the courts that handle guardianships.

In addition, the report recommended that the Courts should increase the recruitment and training of volunteer guardians, and more guardians who are state-agency-funded and -monitored should be provided as guardians of last resort. This is also surprising, considering that the main complaint was that too many people had court-appointed guardians. The shortage of guardians available for appointment by the court is often mentioned in other reports on guardianship.

The report also includes this statement:

“Many of the recommendations may increase costs to the local funding units or state agencies. Implementation of such recommendations must only be done with a corresponding increase in appropriations to cover costs to avoid any unfunded mandates.”

Some members of the Task Force belonged to organizations that would later become recipients of the type of funding recommended by the report. This included representatives of Michigan Protection and Advocacy Services and the director of the Washtenaw Association for Community Advocacy, a local affiliate of the ARC. They received funding from the Michigan DD Council from 2002 - 2004 for the “Preventing Guardianship” project. 

More to come….

See also Comments to the National Council on Disability on Guardianship and Supported Decision-Making

Massachusetts: Sheltered workshop closures result in less employment and fewer options for DD

Here at The DD News Blog, we have covered the movement to close sheltered workshops  for people with developmental disabilities. These closures have been supported by disability rights advocates who claim that it is a civil rights issue and that services for people with disabilities provided in congregate settings (settings that serve more than 3 or 4 people with disabilities together) are necessarily discriminatory. That the individuals involved in sheltered workshop programs voluntarily choose to work in these settings and need the services they provide, does not seem to matter. As far as these advocates are concerned, they know better and have determined without necessarily knowing the individuals involved that congregate programs are illegally segregating and isolating. More often than not, the legal justification for this is based on a misinterpretation of the 1999 U.S. Supreme Court Olmstead decision interpreting the Americans with Disabilities Act.

Disability rights advocates  have also pushed to eliminate sub-minimum wage certificates for people with disabilities who work at a slower pace than their non-disabled peers or are otherwise unable to cope with integrated, competitive work settings. These certificates issued by the U.S. Department of Labor are often used by sheltered workshops to employ people with developmental disabilities. While abusive employment policies that exploit people with disabilities should not be tolerated, sub-minimum wages allow sheltered workshop programs to continue operating and pay for the services they provide. The people employed usually are eligible for social security and Medicaid benefits that subsidize their living expenses and pay for needed services. For people with DD who want to work in competitive, integrated work settings, supported employment services should be available along with a variety of work options that fit the needs of the individuals involved.

With the elimination of sub-minimum wages and the movement to close sheltered workshops, both reinforce the other and mainly result in reducing employment for people with DD and eliminating options that often work better for people with severe disabilities. 

Here is yet another example of this from the Massachusetts COFAR Blog:

David Kassel at COFAR has been covering a 2013 plan by Massachusetts to close sheltered workshops and to place people with developmental disabilities into the mainstream workforce. The promise made by disability advocates, the Massachusetts Department of Developmental Services (DDS), and corporate service providers was that integrated, competitive employment would be available for people with even the most severe disabilities, eliminating the need for sheltered workshops. As often happens, the promise has yet to materialize, leaving people with disabilities with fewer options for employment.

In “Few people moving from sheltered workshops to ‘integrated’ jobs”, 1/30/16, David Kassel describes the lack of progress toward a policy to move people with DD into integrated employment.

“While the Baker administration appears to be moving ahead with a policy of closing all remaining sheltered workshops for developmentally disabled persons in Massachusetts, records show that relatively few people so far have been transferred from the workshops to the 'integrated employment settings' that are supposed to replace them.

"Confirming our concerns, the data from the Department of Developmental Services show that most of those people have been transferred to community-based day programs funded by DDS or MassHealth.”

According to Kassel, DDS records show that the number of people in sheltered workshops decreased by 61 percent, while the number of people with DD in corporate-run, community-based day programs increased by 27 percent. The number of sheltered workshop providers dropped from 39 to 14.

“In contrast to the increase in day program use, the number of developmentally disabled people in 'integrated employment' settings increased from August 2014 to 2015 by only 337, or about 6 percent…”

Kassel goes on to explain what happened:

“‘Integrated individual employment' is defined by DDS in a 2010 policy directive as 'taking place in a workplace in the community where the majority of individuals do not have disabilities.'  In addition, the policy directive states that the 'optimal employment status is earning the prevailing wage.'

"Many families of the sheltered workshop participants have countered that those [sheltered workshop] programs are fully integrated into the surrounding communities and provide the participants with meaningful activities and valuable skills.  Those families have also raised concerns that there are relatively few integrated or mainstream workforce jobs available for people with developmental disabilities; and that absent a sufficient number of such jobs, former sheltered workshop participants  are likely to be transferred permanently to community-based day programs that do not offer the same activities or skills as the workshops did.”

Funding to transition people into competitive employment was less than requested and it appears that much of it went to providers of community-based day programs.

Kassel concludes that, “The disappearance of sheltered workshops appears to be yet another example of the erosion of cost-effective care for the developmentally disabled due to the influence of corporate interests that stand to benefit financially from it. At the very least, this case shows that a public agency should not develop policies jointly with the corporate contractors that it funds.” 

In “House and Senate not following their own funding plan for employment of the developmentally disabled”, 5/31/16, by David Kassel at COFAR Blog, the story continues: All sheltered workshops in Massachusetts are scheduled to close by June 30, 2016. 

“But the problem is that the Legislature, and to some extent the administration itself, aren’t following through on the policy, which calls for beefing up funding for DDS day programs and job development staffing.  Last week, the Senate joined the House in rejecting higher funding levels considered by the policy planners to be needed by both day programs and employment programs for Fiscal Year 2017.

“…A likely result of this apparent under-funding is that relatively few people will be placed in mainstream jobs, but rather will be sent to potentially overcrowded day programs with inadequate staffing.”

In comments to the state, 

“…the ADDP [the Masssachusettts advocacy group for corporate service providers] maintained that funding for both the community day and work line item and sheltered workshops transfer line items needed to be boosted significantly in order to fulfill the plans to close the workshops and transfer clients to mainstream jobs…

“The ADDP comments also noted that as of October 2015, the number of individuals receiving community based day services more than doubled from 2,656 individuals as of June 2013, to 5,422. While noting that this increase was directly related to the closures of the sheltered workshops, the ADDP stated that the majority of those persons were not receiving any other DDS-funded employment services.

“The ADDP comments also pointed out that DDS day programs require significantly higher levels of staffing than the sheltered workshops did.”

Kassel concludes that, 

“It appears that the only policy the Legislature and the administration have pursued with a real level of commitment has been closing the sheltered workshops. But that’s only half the plan.  The problem with the Legislature, in particular, is that while it bought into the first half of the plan, it now has seemingly abandoned the critically important second half.

“Thousands of people have or will be removed from their sheltered workshops, and the Legislature appears to be leaving an unknown number of them in the lurch.”

Wage Protections for Home Care Workers Reinstated

This is from an article in Disability Scoop by Michelle Diament, August 21, 2015:

…A federal appeals court has upheld a rule requiring that in-home care workers assisting people with disabilities be paid minimum wage and overtime.

…Labor Department regulations issued in 2013 extended minimum wage and overtime protections to home care workers for the first time. Under the rules, most caregivers must receive at least the federal minimum of $7.25 per hour and qualify for time-and-a-half if they work more than 40 hours per week.

The wage protections …were struck down in January by U.S. District Judge Richard Leon who said the Labor Department had overstepped its authority.

On Friday, however, a three-judge panel found otherwise…Trade groups representing agencies that employ many in-home care workers brought the court challenge. They said the pay hike could make such care unaffordable.

Some self-advocates have also argued that the pay increase could leave people with disabilities without the care they need to remain in the community.

Read the full article...

There is more to this story:

The lawsuit to stop the Department of Labor wage and overtime regulations from going into effect was brought by the Home Care Association of America, ADAPT, a disability rights group, and the National Council on Independent Living filed a brief against the Department of Labor regulations and supporting the Home Care Association.

In an earlier article from Disability Scoop, January 2015, ADAPT made this statement:

“The Department of Labor developed this rule without adequate involvement of the disability community which was concerned that without additional Medicaid funding, attendants would lose income that is vital to their lives and individuals with disabilities would be forced into institutions...ADAPT stands ready to work with organized labor and worker groups to fight for improvements in attendant wages and benefits in a manner that doesn’t sacrifice the rights and freedom of people with disabilities.”

Home Help Services is a mandatory Medicaid-funded service, meaning that it must be provided to all eligible people on Medicaid. That includes people with disabilities who live in their own or their family's home who need in-home service providers who can assist with daily activities. The question is, will the federal government and the States increase funding to cover the extra costs of home care, or will they avoid the problem by cutting the number of hours available to people with disabilities or making other adjustments that interfere with people getting the services they need?

Stigmatizing people with serious mental illness and severe developmental disabilities

Recently, I came across an article on the Huffington Post Website by Liza Long, the mother of a son with bipolar disorder.  The article, “5 Reasons I Wish We Would Stop Talking About 'Recovery' for Serious Mental Illness And the Word I Wish We Would Use Instead” (1/30/15), was written after a friend’s 22-year-old son, who had paranoid schizophrenia, committed suicide. The young man’s death was all the more poignant because the mother and son had been featured in a series of articles in USA Today on “The Cost of Not Caring”. The son was finally receiving the treatment he needed and seemed to be on the verge of successfully managing his illness.

The author reflects on the way we talk about mental illness as possibly contributing to the stigma experienced by people with its most severe manifestations: 



“There's a popular quote floating around mental health advocacy circles: ‘Mental illness is not a choice. But recovery is.’ I know people will disagree with me, but today, I'm tired of that sentiment, and I wish we would retire the word ‘recovery.’ When local and national mental health policy is shaped by high-functioning consumers who have been able to manage their illnesses rather than by the sickest patients and their families, it's the equivalent of only allowing stage 1 cancer survivors to drive the narrative and take most of the funds. While their courage is admirable and their struggles are genuine, too often, we lose sight of those who are suffering the most. They become invisible to us, marginalized on the streets or in prison. Or they die young, like Zac….I wish we would stop talking about recovery and replace it with a more useful, less stigmatizing word: hope.” 



“...The concept of recovery increases stigma, both within and outside the mental health community. ...if people recover, why aren't you recovering? …Recovery seems dependent on a prescribed set of treatments that may not work for everyone.”



“…Mental illness is not a choice. But hope is. Even in the face of tragedy, today I choose hope.” 



As the mother of two adult sons with profound developmental and intellectual disabilities, I see striking parallels in how disability rights advocates, intentionally or not, marginalize and stigmatize people with the most severe developmental disabilities. 



Disability advocates talk about high expectations rather than recovery. Low expectations, they say, are barriers to achieving independence, productivity, and full integration into the community that all people with disabilities can be expected to achieve. These admirable goals may be achievable by some people with even the most severe disabilities, but certainly not by all. What about 38-year-old Danny, who functions at the level of a 6 - 12 month old infant and needs total help and assistance to accomplish anything. Independence and productivity are pipe dreams for Danny, but maybe we can blame that on his mother who hasn’t expected enough of him.



And why pay for all the things that Danny does need, such as competent and compassionate care in a setting that offers him comfort, pleasure, and a meaningful life, when these things will never change him into a person who can meet expectations set by others? What does "full integration" mean for a person who can't communicate in any specific way or take care of himself? For people with disabilities who really can overcome barriers and achieve ordinary and sometimes great things, doesn't their association with a person like Danny make them look bad? What could be more stigmatizing for Danny than being set apart as a person who is using up Medicaid funds that should go to people who are more "deserving" and who "can really amount to something"? Even his existence may be an embarrassment for those attempting to show that people with disabilities are worthy of public support.



The Home and Community-Based settings rule from CMS, the federal agency that regulates Medicare and Medicaid, threatens settings most likely to serve people with the most severe disabilities such as center-based work programs, congregate residential programs, day and pre-vocational programs, and other congregate settings that serve more than a few people with disabilities in one place. 



State and federal Vocational Rehabilitation (VR) systems are being overhauled by the 2014 federal Work Innovations and Opportunities Act (WIOA). According to proposed regulations for WIOA, “The foundation of the VR program is the principle that individuals with disabilities, including those with the most significant disabilities, are capable of achieving high quality, competitive integrated employment when provided the necessary skills and supports.” These are high expectations, indeed, but simply making that assertion does not change the capabilities of individuals with disabilities. What are we to think of people with disabilities who will not be able to find work under the condition that it be both competitive and integrated with work done by non-disabled people? Are they lazy? Unmotivated? What other excuse could there be? 



At an oversight hearing in February 2015, Kathy Greenlee, the head of the federal Administration for Community Living (ACL), testified before the House Subcommittee on Labor, Health and Human Services, Education, and Related Agencies. The ACL includes the Administration on Intellectual and Developmental Disabilities that oversees programs funded by the federal Developmental Disabilities Act. Greenlee stated early on in the hearing that the core idea behind her agency was that people who are aging and adults with disabilities should be able to live independently and participate fully in their communities.  Later, (at about 1hour and 38 minutes) she was questioned by Representative Steve Womack from Arkansas about whether the goal of her agency was to eliminate long term care facilities for people with the most severe disabilities. Her response was that “We have become extraordinarily good in this country at serving people with significant disabilities in home settings and we continue to improve our ability over time." 

When we look at the facts on how well we, as a country, take care of people with significant disabilities, we may come to a different conclusion: 



(from the Madison House Autism Foundation Website via The DD News Blog)

• There are 3.775 million people with Intellectual and Developmental Disabilities (I/DD). 77% of them do not receive publicly funded residential supports.
• Of the 23% (1.127 million people with I/DD), who do receive publicly funded supports, 56% live with family and 44% do not live with family.
• Of the 44% who do not live with family, 27% of those live in their own home. The other 73% live in group homes, foster homes, nursing facilities, and less than 1,000 live in psychiatric facilities.
• 77,000 are on a waiting list for services needed in the next year. 853,000 are living with caregivers aged 60 or over.

According to the 2014 UCP Case for Inclusion, almost 317,000 people are on a waiting list for Home and Community-Based Services.



In Michigan, the Medicaid-funded Home Help program, that is intended to allow people who are aging and people with disabilities to remain in their own homes, is fraught with problems, including low pay for direct care workers who are often poorly trained and not up to performing tasks that are increasingly of a more complex medical nature. Many workers were found to be unreliable. Some workers being paid by the state were felons, although the state seems to have cracked down on this with background checks.

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Before we give ourselves a collective pat on the back for how well we take care of people with significant disabilities, we need a reality check. We can’t take care of people with the most significant disabilities well, if we do not admit that we have far to go before we can claim that “we are extraordinarily good at it”. We can’t take care of people with the most significant disabilities well, if we do not acknowledge, first, that they exist, and then that our expectations of what we would like them to achieve do not magically translate into their being capable of those achievements.

Hope is in my vocabulary, also, but it does not come from believing that Danny and Ian will overcome their disabilities. I know that my sons can be cared for compassionately by people who are up to the task because I have seen it happen and Danny and Ian have had the good fortune to experience some (but not enough) of that. Where do we go from here? We should start with seeking out and learning from individuals with disabilities and their families who experience the heart breaking dysfunction of our system of care and not allow ourselves to be distracted by false ideologies and wishful thinking. 

Wisconsin letter to CMS: continued choice for employment and day services

Family advocates in Wisconsin spent months appealing to the state to continue to ensure choice and the availability of a full array of options for non-residential settings, including sheltered workshops. After the CMS issued its clarification of the new HCBS Rule on the subject, the Wisconsin Department of Health Services wrote a letter to the CMS with its decision to continue to assure a full array of available non-residential settings and choice.

The letter stated that, 

"Sheltered workshops have provided services and resources to individuals and families for years. They provide assistance in developing work skills that help people move into employment across the state. We believe that sheltered workshops provide services that are vital to the individuals and families who depend on them and should remain part of Wisconsin’s robust efforts to help people with intellectual disabilities gain employment. We understand that it is an allowable choice for people to receive employment services in a sheltered workshop setting under Wisconsin’s approved waivers. 

"We have now reviewed the home and community-based non-residential settings guidance that CMS issued on December 15, 2014. Based on this new guidance, which continues to emphasize individual rights and choices, Wisconsin will continue to offer our most vulnerable residents a choice of settings for employment (both competitive and non-competitive) and day services. As CMS has indicated, the setting chosen by the person may depend on whether he/she requires services that are highly clinical or medical in nature or he/she has competitive employment goals."

This shows what is possible under the new rule and that it does not necessarily portend the closing of all congregate (group) settings, as many advocacy organizations pushing for closure would have us believe.

The Revolving Door between Advocacy Organizations and Government

I found this in an email newsletter from ACCSES, a national disability provider organization. 

Careful! You might get dizzy. Ms. Barkoff has gone from staff attorney at the Bazelon Center for Mental Health Law, to the US Department of Justice, with forays into the Centers for Medicare and Medicaid Services and the Department of Labor, and back again to the Bazelon Center:

Alison Barkoff Returns to Bazelon as Advocacy Director

Ms. Barkoff was a staff attorney with the Bazelon Center [for Mental Health Law] from 2005 to 2010, before joining the U.S. Department of Justice (DOJ), where she served for four years as Special Counsel for Olmstead Enforcement in the Civil Rights Division. As Director of Advocacy, Ms. Barkoff will help lead the Bazelon Center's policy and litigation work, as well as work on organizational activities such as fundraising. While at the DOJ, Ms. Barkoff led the Civil Right Division's efforts to enforce the rights of individuals with disabilities to live, work, and receive services in the community. Under her leadership, the Division issued its first guidance based on the U.S. Supreme Court's landmark Olmstead disability-rights ruling and was actively involved in Olmstead litigation across the country, including several cases culminating in statewide system reform settlement agreements. She also worked with Centers for Medicare and Medicaid Services [CMS, the federal agency that regulates Medicare and Medicaid] on finalizing rules governing Medicaid-funded community-based services and with the Department of Labor on implementation of its new home care rule in Medicaid-funded disability service systems.

Michigan Disability Advocates and Campaign Finance Shenanigans

An article in the Detroit News from March 10, 2014, "Mich.slaps health care union with 2nd largest elections fine ever", by Chad Livengood, covers campaign financing law violations by the Service Employees International Union (SEIU) during a campaign to support a ballot proposal in the November 2012 election. The headline does not convey a surprising fact: Michigan disability advocates were involved as the treasurers of the campaign fundraising committees that were investigated and called to account for their handling of campaign funds and failures to meet reporting requirements in the law. The body of the article goes into some detail about Proposal 4, which was defeated in the election, and the campaign committees 
supporting it.

The article summarizes the actions by the Michigan Secretary of State:

"Secretary of State Ruth Johnson’s office slapped the labor union with a $199,000 fine for multiple campaign finance violations after it used a nonprofit corporation to funnel $9.36 million in contributions into a ballot campaign seeking the passage of Proposal 4 in 2012. The fine is the second largest in Michigan elections history...

"The ballot campaign, Citizens for Affordable Quality Home Care, received nearly all of its funding from a single company called Home Care First Inc., which received its funding from SEIU and Michigan-based affiliates, according to a Bureau of Elections investigation.

"Home Care First Inc. 'belatedly' set up a ballot committee that reported after the November 2012 election that all of its money came from SEIU and its affiliates, an investigative report states.

"The state found SEIU and campaign treasurers for the two committees violated the Michigan Campaign Finance Act for 49 transactions of commingling funds in multiple bank accounts, 31 contributions involving incomplete or inaccurate campaign statements and three late contribution reports."

Dohn Hoyle, the Executive Director of The ARC Michigan, a state advocacy organization for people with developmental disabilities, was the treasurer of the Citizens for Affordable Quality Home Care (CAQHC). Norman G. DeLisle, Jr., who has been the Executive Director of the Michigan Disability Rights Coalition (MDRC) since 1997, was the treasurer of Home Care First Incorporated (HCFI). 

The campaign committees were both formed in March 2012. CAQHC received donations funneled through HCFI without disclosing that the HCFI funds came entirely from SEIU-affiliated organizations. HCFI did not file all required forms with the state until just before the 2012 election and did not reveal the source of its funding until after the election. 

Hoyle, DeLisle, and the SEIU did not admit guilt and no criminal charges were filed as a result of the investigation. Instead,  a conciliation agreement was reached with the Secretary of State's Office with regard to the complaint, D'Assandro v Home Care First, Inc and Citizens for Affordable Quality Home Care and the $199,000 fine was levied by the Secretary of State. The SEIU and the disability advocates admitted that "mistakes were made" and claimed that they had not fully understood the campaign financing law. This is surprising, since presumably both the SEIU and the committee campaign treasurers had access to attorneys to advise them when they set up the campaign committees. 

Filling in the blanks: Why were disability advocates involved in a ballot proposal campaign?
 
Proposal 4, a statewide ballot proposal that was defeated in the November 2012 election, was meant to amend the Michigan constitution to continue to allow union representation and collective bargaining rights for Medicaid-funded Home Help Workers and to reinstate the Michigan Quality Community Care Council, which had been defunded by the legislature, and rename it as the Michigan Home Quality Care Council. The Council would continue to be made up mostly of advocates for people with disabilities and seniors and would act as the representative for employers of Home Help Workers for the purposes of collective bargaining with the state. The employers of home help workers are the seniors and people with disabilities who receive Medicaid funding to pay for help with household chores and personal care in their own homes. The Council would also have maintained a registry of workers who had passed background checks and would offer training to improve job skills. 

Other relevant facts:

The financial stake in the pro-Proposal 4 campaign was significant: The SEIU collected about $6 million per year in dues and fees from Home Help Workers and, prior to being defunded, the Council received about $1.1 million per year from the state. 

Many factors make Home Help Workers a difficult and unusual population to unionize:

• About 75% of the Home Help Workers in Michigan are family members or close friends of the seniors and people with disabilities who hire them. Often the employee is the parent or another family member. Even more complicated is the fact that the employee may also be the legal guardian of the employer, the senior or disabled person. 
• In 2005, when the election for unionization of Home Help Workers was held, only about 20% of those employed voted. There was confusion, especially among family members, about whether unionization applied to them at all, because many of them did not consider themselves "employees".
• Because the work takes place in the employers home, it is difficult to assess or regulate working conditions.
• The union was limited in how much it could bargain for increased wages because of  appropriations decisions made by the legislature.

It does not appear that seniors and people with disabilities had any say in who represented them in the collective bargaining process. 

The Home Help program has been around since the 1980's and its continued existence was not threatened by either the passage or defeat of Proposal 4.

Advocacy for whom?

The financial entanglements of the disability advocates with the SEIU during the proposal 4 campaign seems to be a conflict of interest with the advocates' representation of people with disabilities and seniors.
 
When advocates and their organizations claim to represent people with disabilities, they need to maintain their independence and avoid conflicts of interest. In this convoluted campaign to amend Michigan's constitution, advocates allied themselves with a labor union while simultaneously seeking to continue to represent seniors and people with disabilities in collective bargaining with the union. The participation  of disability advocates in campaign shenanigans of this magnitude certainly did not enhance the lives of people with disabilities nor did it protect the reputations of their organizations.

More information:

Michigan Secretary of State press release on the finance campaign investigation.

For more information on Proposal 4, see The DD News Blog.

To see documents relating to the complaint investigation, link here to the Secretary of State's website. Then scroll down to 8/30/2013, D'Assandro v Home Care … and link to documents in the right hand column, parts 1 - 12.

More news coverage on the campaign finance violations from Mlive and the Detroit Free Press

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P.S. - Irony Alert!

During the campaign for Proposal 4, a report from MIRS Capitol Capsule for April 10, 2012, quoted Mr. Hoyle as he complained about the the Governor signing a bill to reverse the ability of home help workers to unionize as state employees and the defunding of the MQCCC:

" Hoyle said he doesn’t understand people who have not talked with or dealt with MQCCC but are 'so bent on changing things without regard for what it does to people.'

"'To me it is just an ideological problem when people get so bent in one direction and ignore people who are on the other end of it, those with disabilities and those who are older,' he said. 'That’s just sad in my mind.'"

Many families will appreciate the irony of Mr. Hoyle's complaints, considering his own ideological bent and the adverse effects it has on people with disabilities. See "The ARC Michigan to state: Stop funding congregate settings" and "The ARC Michigan: Our way or the highway" 

VOR: Refusing to redefine individual choice

This is from featured news on the National Autism Network website:
  
Meet VOR: An organization that unites by refusing to redefine individual choice

Mar 04 2014

By Tamie Hopp, VOR Director of Government Relations & Advocacy

I am delighted to have this opportunity to introduce you to VOR, an organization that is really like none other.

VOR is a national, nonprofit organization advocating for high quality care and human rights for all people with intellectual and developmental disabilities.

We are the only national advocacy organization that has not redefined terms that other disability advocates have hijacked, like “choice” and “community.” 

For 30 years, VOR has remained true to the families we represent by putting their seasoned insights and perspectives first. To us and them, “choice” really means choice. Our advocacy is driven and guided by an undeniable truth: Individuals and their families know best.

To get to know VOR even better, we are offering a complimentary e-subscription to our publications through June 2015, no strings attached, including our weekly VOR E-News Update and our newsletter, The Voice, published three times a year. Just send your email address to info@vor.net with your request. Your email will never be shared or sold.

You will find VOR unique and refreshing in this day and age of advocacy. We respect individual differences, and reject “broad brush” policies that apply to most individuals with disabilities, but not all.  In our view, such an “all or nothing” approach is not person-centered or individualized and imposes an ideology on the most disabled members of our society and places them at risk.

VOR’s advocacy – our walk to support our talk – is carried out at the state and federal levels by an army of members and volunteers, the vast majority of whom have family members with profound cognitive disabilities.

In state houses, court rooms, Congress and the media, we are doing all we can to help change the conversation away from ideological notions of what is best for all people with developmental disabilities, to what each individual needs.  We challenge laws, seek reforms and help families.

In short, VOR is doing all we can to answer what “Autism Daddy” says is the question many parents of autistic children and adults are afraid to ask, “Where Will He Live When We're Gone?”

VOR demands realistic answers to this question by working to ensure that the system is responsive to all needs, and working in coalition to expand housing and vocational options and challenging efforts at all levels, including our federal government, to eliminate specialized residential, vocation, and support services.

The need is significant. 3.5 million people with I/DD and autism are living with family caregivers (many who are elderly), there have been less than a quarter million out-of‐home residential opportunities funded in nearly 20 years,  and 268,000 Americans with I/DD are on waiting lists for services.

Does it make sense to eliminate specialized service options for people with profound needs because of someone else’s notion of “inclusion” and “community?”

VOR’s vision of the world puts individuals and their families in the driver’s seat, not federally-funded advocates that attempt to speak for you and your family.

VOR is 100% privately –funded, supported entirely by our members, primarily families like you.

We invite you to learn more about VOR at www.vor.net; and don’t forget out our complimentary subscription offer (to get signed up, send your request to info@vor.net).

The more advocates we have speaking up in support of individual rights, family rights and common sense, the more successful we will be.

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About the National Autism Network:

The National Autism Network is the largest online resource for the autism community providing a social network, nationwide provider directory, events calendar, discussion forums, autism news, expert written content and thousands of resources. Our mission is to unite and empower parents, providers, family members and individuals on the autism spectrum by providing a growing community rich in knowledge and expertise with a common goal of working together to make a difference in the lives of those affected by autism. We are all in this together as one community!