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.

 

What's old is new again: Regulating community services for people with disabilities: a promise fulfilled or a barrier to appropriate services?

This is a post from The DD News Blog for August 12, 2018. Not much has changed since then, with the exception of a worldwide pandemic that killed over a million people in the US and revealed serious inadequacies in the country's healthcare system. It also shined a light on the heroics of healthcare workers on the front lines of the pandemic, who, at first had the admiration and respect of the public. Later, they suffered abuse from the misdirected anger of a portion of the public stirred up by conspiracy theories about the virus and vaccines. The system of care for people with I/DD and their families also suffered with programs closing, some temporarily, but others permanently. Severe work shortages, especially among direct service professionals, hampered an already distressed system, seemingly on the verge of collapse. We seem to be back, but not quite, to where we were when the whole thing began. 

This is a good place to start, heading into a new year with the same old controversies that must be resolved if we are going to rebuild a fair system that includes recognition of the full range of people served and the diversity of needs.

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Sunday, August 12, 2018

In 2014, the federal Centers for Medicare and Medicaid Services issued “the Settings Rule” as an attempt to regulate how and where Medicaid-funded Home and Community-Based Services (HCBS) are provided in community settings to people with disabilities. Although the settings rule is promoted as a policy of liberation to bring about “true” integration and inclusion of people with disabilities in community settings, the corollary to that is the assertion that the rule will free up funding to be redistributed, first by closing programs that some advocates argue no one wants or needs, and then to pay for services that the same advocates claim are "truly" inclusive.

Many I/DD advocacy groups, most notably those receiving federal funding under the federal Developmental Disabilities Act, oppose all “congregate” programs that serve more than 3 or 4 people with intellectual and developmental disabilities (I/DD) together. Rather than emphasizing the individual right to appropriate services and the requirement that “a public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities…” [emphasis added], many advocates promoting the Settings Rule have focused mostly on closing programs, thereby eliminating them as a choice for those who still want and need them.

To what extent is implementation of the Settings Rule improving the lives of people with I/DD? Or is it just an excuse to reduce or eliminate programs for people with the highest support needs in hopes that others can benefit from the redistribution of precious Medicaid dollars?  Is it realistic to expect that the supposed cost-savings will pay for more and better services in the community? From the perspective of people with I/DD and their families who are losing programs they have relied on for years, the Settings Rule is seen as an excuse to de-fund needed services.

Judging from the promises made over many decades from advocates and government agencies, that closing institutions would pay for more and better services in the community, it is highly doubtful that removing people from institutions (or from settings that are too "institutional in nature” under the Settings Rule) will generate significant savings to pay for adequate services for everyone else.

As advocates and government agencies pursue their dream of closing all institutions, as well as eliminating specialized group settings for people with disabilities, they avoid the obvious question of how much more money must be put into the system to meet the needs of people with I/DD and where will it come from? It means confronting politically unpopular ideas, at least unpopular with most current elected officials, such as boosting Medicaid funding to pay for more and better services. Efforts to stabilize the workforce of direct service providers by providing them with a living wage and better working conditions and linking the funding of services with needs established by well-written individual service plans could improve both the quality of services and accountability to people with disabilities and to taxpayers.

This dilemma - justifying program closures with promises of future savings to pay for community services - was recognized by a fervent proponent of deinstitutionalization Sam Bagenstos, a former Principal Deputy Assistant Attorney General in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases.  [He currently serves as general counsel of the US Department of Health and Human Services and is on leave from the University of Michigan Law School] In a 2010 Cardozo Law Review article, “The Past and Future of Deinstitutionalization Litigation”, Bagenstos admits that closing institutions has not resulted in sufficient services in the community to allow people with psychiatric and intellectual and developmental disabilities to flourish.

This is an excerpt from a 2013 article from VOR , “Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider”:

First, Bagenstos argues that one measure of the success of deinstitutionalization is the sheer numbers of people with I/DD who have been deinstitutionalized and the numbers of institutions that have been closed since 1967:

"[D]einstitutionalization advocates have essentially won the old battles for the closing and downsizing of large state institutions for people with psychiatric and developmental disabilities . . . the population of state institutions now stands at approximately 16% of its peak, the population of state and local psychiatric hospitals stands at approximately 9% of its peak, and these numbers continue to decrease."

Bagenstos goes on to admit, however, that the political alliance between deinstitutionalization advocates and fiscal conservatives meant certain failure for the advocates’ second goal, “to develop an array of services and supports in the community to enable people with psychiatric disabilities or intellectual/developmental disabilities to flourish.”

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.

Even if some deinstitutionalization advocates were initially unaware that they had entered into a “devil’s bargain” with fiscal conservatives, unconscionably, closure efforts continued even after it became apparent that widespread tragedies were befalling fragile individuals with I/DD developmental disabilities in inadequate community settings.

Supporters of the HCBS Settings Rule seem to be making their promises of improved services and better lives for people with disabilities contingent on the idea that savings from the closure and elimination of specialized congregate (group) settings in the community will result in the redistribution of funds. It is politically easier for advocates to call for the closure of programs that do not meet their criteria of “true” integration and inclusion than to confront the reality that the community system of care for people with I/DD is underfunded and to a large extent broken. Many of the organizations promoting their interpretation of the Settings Rule also get a significant amount of funding from government agencies that fund programs under the DD Act. They know better than to bite the hand that feeds them by advocating for politically difficult but necessary solutions to the crisis in community care.

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See also,

“Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider” from VOR, 2013, including footnotes and references.

"What does the ADA Integration Mandate really mean?", The DD Newsblog, 4/10/16

Samuel R. Bagenstos, The Past and Future of Deinstitutionalization Litigation, 34 Cardoza L. Rev. 1 (2012)

Myths and Facts about Vocational Work Centers

The Raise the Wage Act of 2021 would increase the federal minimum wage to $15 per hour, a move supported by a majority of Americans. However, the bill would also lead to the elimination of work opportunities for thousands of severely disabled workers. By eliminating the use of sub-minimum wage certificates authorized by section 14(c) of the Fair Labor Standards Act, businesses that operate work centers that make special accommodations for severely disabled workers would very likely be unable to continue operating. 

Here are the Myths and Facts about work centers from VOR (a Voice Of Reason), a national nonprofit organization advocating for a full range of employment, service, and residential options to meet the needs of people with intellectual and developmental disabilities (I/DD).

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MYTHS AND FACTS ABOUT VOCATIONAL WORK CENTERS

MYTH: People with intellectual and developmental disabilities (I/DD) and their families are dissatisfied with vocational work centers.
FACT: Vocational work centers (also known as sheltered workshops) are valued for the services they provide to people with I/DD who are unable to adapt to competitive employment. When these centers are threatened with closure, employees with I/DD and their families are the most fervent advocates for keeping them open.

MYTH: Vocational work centers are isolating environments.
FACT: These work centers are part of the greater community. Those who choose jobs at work centers develop a sense of accomplishment and self-worth because of work completed. Far from being isolating, they offer people a sense of camaraderie and a chance to interact with their peers.

MYTH: Vocational work centers are the only choice for work for people with intellectual disabilities.
FACT: There are many resources available through state vocational rehabilitation departments to assist with opportunities for competitive employment. No one can legally be forced to work in a vocational work center. 

MYTH: Work centers do not provide opportunities to transition to competitive employment in the community.
FACT: For those who can develop skills to work in competitive employment, work centers provide opportunities to learn skills necessary to be successful such as being on time, working with others, and completing assigned tasks.

MYTH: All people, no matter the nature of their disability, can find competitive employment.
FACT: Some individuals have more difficulty adapting to competitive employment. Vocational centers provide opportunities for work while providing more specialized supports such as personal hygiene care, preventing and attending to seizures, or helping with behavioral issues and developing social skills.

MYTH: Work centers do not provide for meaningful jobs.
FACT: Examples of work opportunities include: manufacturing, item assembly, recycling, packaging, repair, and machine operating. https://dese.mo.gov/special-education/sheltered-workshops/jobs-performed-sheltered-workshops   

MYTH: Oversight of vocational work centers is lax.
FACT: According to the Department of Labor: “All subminimum wages must be reviewed and adjusted, if appropriate, at periodic intervals. At a minimum, the productivity of hourly paid workers must be reevaluated every six months and a new prevailing wage survey must be conducted at least every twelve months.”
https://www.dol.gov/whd/regs/compliance/whdfs39.pdf

MYTH: Vocational work centers violate the 1999 Supreme Court Olmstead decision.
FACT: The 1999 Supreme Court Olmstead decision supports CHOICE. Closing these centers contradicts the opinion expressed by the majority of Justices in Olmstead by eliminating a desired, chosen and helpful employment option. 

MYTH: Eliminating 14(c) certificates of the Fair Labor Standards Act will increase employment rates of all individuals with disabilities.
FACT: 14(c) wage certificates of the Fair Labor and Standards Act allow employers to afford to provide the specialized services needed by people with I/DD who are not able to adapt to competitive employment. Eliminating these wage certificates will force the closure of vocational work centers, eliminating jobs with no replacement in
competitive employment.

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See also:

VOR opposes part of the Raise the Wage Act 

Biden's Opening Disability Gambit would eliminate crucial programs for the severely disabled from the National Council on Severe Autism

VOR opposes part of the Raise the Wage Act that would eliminate work opportunities for the most severely disabled

Legislation to raise the federal minimum wage to $15/hour was initially part of The American Rescue Plan, a huge piece of legislation that was passed by Congress and signed by President Biden on March 11, 2021. It was removed before the bill was voted on, but proposals to raise the federal minimum wage continue as stand-alone bills in Congress. The Raise the Wage Act of 2021 has the most support at the moment, and will likely come up for consideration in the future.

Although raising the federal minimum wage is supported by a majority of Americans, the Raise the Wage Act includes a proposal that would adversely affect thousands of  people with Intellectual and Developmental Disabilities (I/DD), especially those who are unable to work in integrated work settings for competitive wages. Part of the proposed legislation would phase out and then eliminate work programs that make accommodations for people with the most severe behavioral and intellectual disabilities. 

One of those accommodations is the use of special wage certificates that allow employers to pay less than minimum wage to people unable to successfully compete with other workers in competitive work settings. These work programs (formerly called sheltered workshops) are voluntary on the part of the disabled employees. They usually provide other social services along with supervised work opportunities. Many of the participants receive support from other government programs and do not rely solely on their employment for basic living expenses. Programs that help disabled employees include SSI (Supplemental Security Income), Medicaid health insurance, and home and community based services to meet the extensive needs of this population. Other employees live in federally regulated Medicaid-funded Intermediate Care Facilities for people with intellectual disabilities. The proposed legislation will result in fewer employment opportunities for these workers, not more. Most will lose programs in settings appropriate to their needs.

The following is a message to Congress from VOR (a Voice Of Reason) warning of the consequences of eliminating special wage certificates and reducing opportunities for work by people with I/DD.

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Please Oppose Elimination of the Section 14(c) Subminimum Wage Certificate Program that Provides for Vocational Work Centers for Individuals with Intellectual and Developmental Disabilities

VOR is a grassroots advocacy organization comprising mostly families of individuals with severe intellectual and developmental disabilities (I/DD), often complicated by significant medical, psychological, and/or behavioral conditions. Just as your neighbors and friends vary in ability, so do people in the disability community. The only difference is that the variance is far greater, with some older individuals with I/DD functioning at the level of young children. VOR has advocated for nearly 40 years for Congress and the public to recognize these differences and make sure these individual needs are not ignored in the push by other advocacy groups for everyone with I/DD “to live a life like yours in the community.” Our approach has been to advocate for a full range of residential options to meet the needs of individuals instead of the one-size-fits all approach. Consistent with this view, we support maintaining a full range of employment options for the I/DD community, making sure these opportunities provide for those who can succeed in competitive integrated employment as well those who cannot.

The American Rescue Plan, H.R. 603 and S. 53, include provisions to raise the minimum wage to $15 an hour for all workers, including all individuals with I/DD. This legislation would phase out the section14(c) program authorized by the Fair Labor Standards Act. The unintended consequence of such a broad provision would be to completely eliminate employment opportunities for thousands of the nation’s most disabled individuals.

What are specialized wage certificates and why is it important to retain them? Section 14(c) [of the Fair Labor Standards Act] authorizes the issuance of these certificates that permit employers to pay individuals with I/DD lower than the federal minimum wage when their level of productivity is so low as to make them noncompetitive in the general workforce. It requires employers to make special accommodations for their intellectual, physical, behavioral, and mental illness challenges, giving thousands of individuals with I/DD the opportunity to work in a specialized environment that nurtures them and fits their abilities.

They earn wages that are appropriate to their level of productivity and their capacity to work. Without 14(c) certificates, they would lose any opportunity to work. 

What is the argument for eliminating the program? Support for eliminating this program rests on the false premise that this is a civil rights issue, i.e., that all individuals, including those with I/DD, can perform work tasks at a level that warrants the minimum wage, and so should be paid accordingly. This is simply not true, and were this notion to be incorporated into legislation, it would result in many individuals with severe I/DD disabilities losing, not gaining, work opportunities. Surely, that is not the goal of this provision.

Who are the individuals who benefit from the 14(c) program, what do they do, and how does it enrich their lives? Employment usually takes place at facility-based work centers, formerly called “sheltered workshops”. These vocational centers provide a specialized environment adapted to individuals with I/DD who desire to work, but may have frequent seizures, act out physically, even violently, when stressed, or need help toileting or having their adult diapers changed.

At the centers, workers crush cans, fold letters for mailing, stuff envelopes, fill soda bottles and cough drop boxes, pack and label items, and perform many small-piece assembly tasks. Each of these employees has a job coach (direct support professional). Sometimes they work alone and sometimes they perform these tasks with assistance. If the work centers had to pay them minimum wage, they would have to close, leaving the workers unemployed.

These centers provide more than employment. They also afford workers opportunities to build self-esteem, develop friendships, and engage in their communities. People who work at these centers do so without fear of being fired, or of having to live up to competitive standards of productivity in order to show their worth. Earned wages, though appreciated, are not the substantive reward for these individuals. 

Congress should expand, not decrease, employment opportunities for all people with I/DD. This is not a binary, either/or, situation. Congress can help those who can perform in a competitive environment without depriving those who are less able from the opportunity to work. VOR supports paying minimum wage to people with I/DD who are able to work in the competitive workplace.

However, ignoring the reality of different degrees of disability would result in thousands losing their jobs. This must not be the outcome. The answer is simple – pay minimum wage to people with I/DD who can, with reasonable accommodations, perform at a competitive productivity level and continue the
section 14(c) program for those who cannot.

Retaining specialized wage certificates under Section 14(c) of the Fair Labor Standards Act and supporting work centers will help persons with severe intellectual, behavioral, and medical challenges continue to find success in productive work, earn a wage, build self-confidence, make friends, and participate in their communities.

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Read more: 

"An Existential Threat against the Significantly Disabled:
Phase-Out of Vocational Centers (Sheltered Workshops)", by Harris Capps, November 2019

"Subminimum Wage: Exploitation or Lifesaving?"

Message from VOR to Congress: "Build Back Better", but don't ignore the needs of our family members with the most severe intellectual and developmental disabilities

VOR (a Voice Of Reason) held its annual Legislative Initiative last week, not in-person in Washington, D.C. as it is usually done, but virtually with Zoom meetings, emails, and good old-fashioned telephone calls. The message was clear and easy to understand: the ideology that "everyone does better in the community" is not universally supported within the disability community and it is not the reality that VOR families experience when programs and residential options are undermined or eliminated in the name of integration and inclusion.

The following is from the VOR Weekly News Update for May 21, 2021.

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Why Do Good For Some? Why Not Everyone?

VOR's Legislative Initiative has been in full swing over the last week, and our meetings with people in congressional offices are likely to continue through next week and beyond. One theme that has come up over and over has been the idea that the Administration and members of Congress plan to make major changes, many would say long overdue changes, to the system that deals with services, supports, and employment opportunities for people with I/DD, and that we don't want our loved ones, and our choices for their care, to be swept aside in this effort to do good things.

We worry that the effort to rebuild the system is aimed at only supporting one ideology, the "everybody does better in the community" ideal, or the notion that HCBS [Home and Community-Based Services] services provide a level of care equal to that of Intermediate Care Facilities (ICFs). We know, from our own experience, that neither of these statements are true.

[ICFs/IID or Intermediate Care Facilities for Individuals with Intellectual Disabilities are federally-licensed and Medicaid-funded residential facilities, some as small as 4-bed group homes up to much larger settings. They serve people with the most severe degrees of I/DD and autism, and their families and guardians. These residential facilities offer a full range of services and 24-hour-around-the-clock support to meet the residents considerable needs.]

So we ask that our choices be supported in this effort to do good. The Biden Administration speaks about building back better. We'd like to take it one step further: Let's Build It Right, this time. Stop pitting the interests of one group of people with I/DD against the interests of another. Stop talking about a non-existent "institutional bias" while you are closing institutions and increasing funding for HCBS.

We support the idea of taking people off of waiting lists. But give them CHOICE. Support all options, and give people the opportunity to use whichever option best suits their needs, at this point in their lives. And if and when their needs change, let them then choose an appropriate option to meet their needs at that point in their lives. Just like our society does with non-disabled individuals.

The first two articles in this week's newsletter exemplify what we encounter daily. The Biden Administration, through the American Rescue Plan as passed by Congress, is giving states flexibility to expand disability services in the wake of the COVID-19 pandemic. But the money is only supposed to go to HCBS services. People in ICFs got COVID, too. The staff of ICFs got COVID, too. Why is the Federal Government only giving extra money to the recipients of HCBS services and their staff?

Again, we see that 500 CEO's have committed to programs that advance inclusion for people with disabilities. That is certainly laudable. But why are people still trying to shut down opportunities that people with I/DD currently enjoy, and thrive under, that do not fit the criteria of "integrated employment"?

Why are there no companies trying to create opportunities for people who have skills and the desire to work, but who are, for one reason or another, not candidates for succeeding in a competitive, integrated environment?

We ask that all people be included in the solutions, and that all options be funded. If there is going to be a $400 Billion increase in spending on disability services, shouldn't it be spent on the people who receive the services, and not divided according to the different ideologies or separate funding streams that have turned our systems into a them vs us system?

Let's build it right this time. Let's provide funds to meet the needs and aspirations of all individuals with I/DD, and let's make sure we fund all of the options that meet the needs of this diverse community.

Comments on the proposed Home and Community Based Services Access Act of 2021

The Home and Community Based Services Access Act of 2021 (HCBS Access Act) has been drafted for the purpose of seeking comments on various aspects of Mediciad-funded care and services. It would provide more funding to HCBS in community settings and eliminate waiting lists for services and much more, but, as always, the devil is in the details. Comments were due on 4/26/2021, but there should be more opportunities to comment as the proposal moves toward becoming legislation in the US House and Senate. My Congresswoman Debbie Dingell, who represents Michigan's 12th Congressional District, is among those sponsoring this legislation. This is the announcement asking for comments and Representative Dingell's Website with more information.

I'm good at finding devils in the details, a useful exercise when it appears you are being offered a bonanza of services and benefits, but in exchange, you are also being restricted from accessing benefits more appropriate for your disabled family member.

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April 26, 2021

From: Jill R. Barker, Ann Arbor, Michigan

Re: Comments on the proposed 2021 Home and Community-Based Services Access Act (HCBSAA) 

To: Representative Debbie Dingell, Cannon House Office Building, Room 116
Washington, D.C. 20515-2212

Senate Special Committee on Aging, Dirksen Center Office Building, G 31 Dirksen Center Office Building:

Chairman Bob Casey, Ranking Member Tim Scott, Senator Maggie Hassan,Senator Sherrod Brown

Dear Representative Dingell, Chairman Casey, Ranking Member Scott, Senator Hassan, and Senator Brown, and other members of the Senate Special Committee on Aging:

I am the mother of two adult sons, Danny Barker (age 44) and Ian Barker (age 36), who have profound, life-long intellectual and developmental disabilities (I/DD).

Danny has severe cerebral palsy, intractable seizures, reflux, a permanently dislocated hip, a feeding tube, and a severe visual impairment. He is unable to communicate in any specific way, although we know when he is feeling good and when he is not. He experiences frequent medical crises - in 2017, he was treated in the Emergency Department at the University of Michigan more than 15 times for seizures that would not stop and five times for aspiration pneumonia, for which he was hospitalized. He lives in a community group home with five other people with similar needs. Despite the severity of his disabilities, he is happy and content with his living situation and gets a great deal of love and attention in that setting.

Ian had problems at birth similar to those of his brother. He also has profound intellectual and developmental disabilities, and, like Danny, he needs total care. He is unable to recognize dangerous situations, much less to protect himself from them. He shares a room with his brother in the same group home where they receive good care.

COMMENTS:

The continued availability of good care that is appropriate to my sons’ needs is precarious due to Michigan’s chronically underfunded mental health system and misdirected efforts that assume that full inclusion in “the community” is attainable and desired by all people with disabilities and their families. The failure to acknowledge the limitations of the full inclusion ideology and the reality that my sons will never attain the desired outcomes of independence and self-determination hamper efforts to improve their quality of life and the effectiveness of programs that serve their needs.

Among the national disability organizations that have commented on the proposed HCBSAA bill, I fully endorse the comments from VOR, a Voice of Reason, NCSA, the National Council on Severe Autism, and the analysis from TFC, Together For Choice. These are organizations that represent people like my sons, who have the most severe disabilities and are the most often underrepresented by other disability organizations and by government sponsored national councils and advisory committees. The organizations mentioned above support a full range of residential and service options to meet the diverse needs of people with severe I/DD and severe autism. 

The first reason listed for the proposed HCBSAA is incomplete and misleading. “In order to fulfill the purposes of Americans with Disabilities Act to ensure people with disabilities and older adults live in the most integrated setting.”

The Americans with Disabilities Act states that “A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” [emphasis added]. This makes clear that the appropriateness of the setting to the individual is of primary importance.

The ADA does not restrict individuals from receiving needed 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 and those needing an institutional level of care.

Workforce Development

I was glad to see that one of the purposes of the proposed legislation is “…to improve direct care work quality and address the decades long workforce barriers for nearly 4,600,000 direct care workers giving support to people with disabilities and aging adults in their homes and communities”. Most direct care workers in both community, institutional, and other congregate settings, have difficult jobs that are undervalued and often unrecognized for their importance. When I came to the end of the proposed bill), I was disheartened by this – “SEC. 7. WORKFORCE DEVELOPMENT…To be supplied” (at least, this is how my version of the bill reads). This is such an important and neglected aspect in providing care to people with disabilities that perhaps it deserves its own piece of legislation. I believe that poor pay, poor working conditions, and lack of status in the workforce could be a leading factor in the collapse of the system of care for people with disabilities, which at times seems imminent. 

Purposes of the HCBS Access Act

Justification to require State Medicaid coverage of home and community-based services is based on false and misleading statements. For example, “…decades of research and practice show that everyone, including people with the most severe disabilities, can live in the community with the right services and supports.”

No competent researcher would make such sweeping statements and pretend that they knew what is possible or desirable for all people with disabilities.

I was on the Michigan Developmental Disabilities Council from 2013 to 2016. At one of the early meetings I attended, a representative from Michigan Protection and Advocacy Services [now Disability Rights Michigan] made the statement that “…we now know that all people with developmental disabilities can work in integrated, competitive work settings for at least minimum wage.”

Whoever decided this, did not talk to me and they never met my sons.

Non-existent and poor-quality services that do not appropriately serve people with severe disabilities, as well as unsafe and unaffordable housing for people with disabilities in the community are staggering problems throughout the country. This legislation would likely push states to move people, often against their will, into unsafe and unprepared communities from congregate settings without dealing with the reality of the present crisis in community care. It is highly unlikely that this proposed legislation will solve all these problems even with new infusions of funding, when the policies do not acknowledge the full range of need and the services to provide for those needs. 

Individualized Assessment allows determination of services and supports by a State approved health care worker with no discernable way for the person with a disability or a legal representative to challenge this determination.

While promoting the idea of independence and self-determination for the person with a disability, the proposed HCBSAA has no discernable way that the person with a disability, or their legal representative, when appropriate, is allowed to participate in determining the needs of the eligible individual. Nor is there any mention of how determinations made by a state approved health care provider can be challenged or overturned:

The HCBSAA requires an individualized assessment of the person with a disability “to determine a necessary level of services and supports to be provided, consistent with an individual’s functional impairment…” The health care provider must be approved by the state to make the determination of the level of services and support.

To make sure that the state approved health care provider does not go too far astray from the desired outcome of policies set forth in the HCBSAA - that everyone can and should be served and live “in the community” - the proposed bill requires that the assessment be “…conducted with the presumption…that each eligible individual regardless of type or level of disability or service need, can be served in the individual’s own home and community; and…at the option of the individual, that services may be self-directed…”

A “presumption” is a belief that is held until there is evidence to the contrary - that the belief is no longer true or practical to hold on to. An assessment should be a means of gathering evidence so that one does not have to make too many presumptions and that leads to conclusions based on evidence and truth. An Assessment should inform the person with a disability and others involved in determining needs and supports for the individual, but the Assessor should not be the person who makes those determinations alone.

There is also a requirement for a Person-Centered Care Plan, based on the individual assessment. The Plan is constricted again by the determinations of the state approved healthcare provider who does the assessment.  

HCBS Services Specified

Many of the services are conditional on the person with a disability conforming to the expectation that they will be integrated into “the community” and will not need much in the way of specialized services or residential care. These include: 

Supported employment (employment in integrated, competitive work settings) and integrated day services, leaving out non-competitive specialized work programs for people with more severe disabilities and specialized day programs for people with severe disabilities.

Services that enhance independence, inclusion, and full participation in the broader community, but leaving out specialized services for other purposes.

Non-emergency, non-medical transportation services to facilitate community integration, but leaving out transportation for other purposes.

Necessary medical and nursing services not otherwise covered which are necessary in order for the individual to remain in their home and community, including hospice services, but leaving out services for other purposes, such as medical services to keep an individual alive, safe, and comfortable.

Specification of HCBS Services by a committee

A panel composed of individuals with disabilities in need of Home and Community-Based Services and organizations representing disability groups, local, state, and federal agencies, family organizations, provider organizations, etc. will submit a report to Congress identifying additional services specified as Home and Community-Based Services with the goal of increasing community integration and self-determination for individuals with disabilities receiving such services.

There is a great deal of controversy in the disability community. Unless the members of the panel are carefully selected to agree with each other, I anticipate that this will create the appearance of a hornet’s nest of activity, but not result in anything of value coming out of it. It could impose even more limits on choice. I do not understand why anyone thinks this is a good idea.

I agree with this statement from the National Council on Severe Autism,

“The HCBSAA ‘Advisory Committee’ would place extraordinary veto power in the hands of a few advocates. The proposed Advisory Committee is designed to be made of a majority of self-advocates and allies, with a minority (if any) representation from those who lack the capacity to advocate for themselves, and who must rely on parents/guardians/conservators to represent their interests… A small, unelected and unaccountable committee would be handed broad discretion to determine what qualifies as HCB services across the country, trumping whatever needs and preferences of severely disabled individuals, an idea that is clearly untenable…”

Thank you for your consideration of my comments on behalf of my sons. I look forward to the day when a truly inclusive approach to Medicaid Home and Community-Based Services takes into account the full spectrum of needs for this diverse population.

Jill R. Barker, Ann Arbor, Michigan

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

VOR opposes legislation that will lead to the closure of employment programs for severely disabled

VOR (a Voice Of Reason) “is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities.” The organization is unique in supporting individuals who have severe and profound disabilities and their families, especially those who need an institutional level of care. Many of our I/DD family members live in Intermediate Care Facilities for people with I/DD (defined as institutions under Medicaid law) while others live with their families or in community homes. 

VOR is unusual, if not unique, as a national organization that does not receive or seek funding from the federal government. VOR is 100% privately funded and receives more than 95% of its financial support from families of individuals with intellectual and developmental disabilities (I/DD). [See The Value of VOR Membership]

As a member of VOR for more than fifteen years, I found a home here for a number of reasons, not the least of which is that I have two adult sons with profound I/DD. With VOR, I am not obliged to follow an ideology that claims that all people with disabilities can live independent lives in their communities, dismissing mention of people like my sons who will never be independent or able to make their own decisions or work in competitive, integrated employment. I do not subscribe to the idea that the quality of my sons’ lives should be measured primarily in terms of how many non-disabled people they come in contact with in their daily lives. This is, in fact, what many federally supported disability organizations are obliged to espouse if they want those federal dollars.

Because VOR relies entirely on the generosity of families and friends, much of the work is done by family “volunteers” (or “draftees”, as is often the case). From time to time, I republish policy statements, commentary, and personal stories from VOR, mostly because they are consistently accurate and well-written and represent voices from the heartland of disability politics that are rarely heard, people with severe and profound disabilities and their families.

The following is a statement of VOR’s opposition to federal bills that include in them the elimination of sub-minimum wage certificates that would lead to the closure of employment programs that serve people with severe disabilities. 

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Please Oppose the Movement to Eliminate 
Work Centers and 14(c) Wage Certificates for 
Individuals with Intellectual and Developmental Disabilities 

The Raise the Wage Act:
H.R. 582 – Rep. Bobby Scott (D-VA) S. 150 - Sen. Bernie Sanders (D-VT)

The Transformation to Competitive Employment Act:
H.R. 873 - Rep. Bobby Scott (D-VA) S. 260 – Sen. Bob Casey (D-PA) 

Thousands of individuals with intellectual disabilities enjoy the opportunity to work in a specialized environment that nurtures them and accommodates their mental, physical and behavioral challenges, while rewarding them with specialized wages that, while not equal to full minimum wages, are appropriate to their level of productivity and their capacity to work. These opportunities rely on specialized wage certificates as provided for under Section 14(c) of the Fair Labor Standards Act. The employment usually takes place at facility-based work centers, sometimes referred to as sheltered workshops. These centers provide more than employment. They provide a protected atmosphere suited to the intellectual and behavioral challenges of the individuals who work there. They cater to a higher-needs population, which includes people who may have frequent seizures, who may act out physically, even violently, when stressed, or who may need help toileting or to have their adult diaper changed. This is a specialized environment for a special population.

In the first weeks of the 116th Congress, two bills have been introduced in the House and Senate that would eliminate these employment opportunities for individuals with intellectual disabilities. Proponents of these bills describe them as civil rights issues, asking:

“If a non-disabled person has the right to work for competitive wages, why should a person with intellectual disabilities be denied the right to work for full, competitive wages?”

This appears to be a perfectly reasonable question, until you think of the different forms of disability, and the severity of some intellectual disabilities. Then the matter becomes complicated, as not all disabilities are equal. 

A more accurate question would be:

“If a non-disabled person has the right to work for competitive wages, why should a person  with intellectual disabilities who is capable of working at an equal capacity be denied the right to work for competitive wages? And why should a person who is not capable of working at a competitive capacity be denied the opportunity to perform any work at all?”

Why VOR opposes these bills:

The movement to promote competitive employment for disabled individuals, encompassing people with visual, auditory, and physical disabilities as well as many people with I/DD, is a noble effort, a true civil rights issue that is overdue. As a society, we should be creating opportunities for those who want to work, and who are capable of integrating into the mainstream and working at a competitive level. But the implications of these two bills echo the “one-size-fits-all” mentality that dominates the I/DD system and marginalizes those individuals who do not fit into the “one size” population. “One-size-ism” will never be appropriate disability policy. The I/DD population is too complex and diverse to be treated with simplistic, one-sized solutions.

Both of these bills are aimed at providing competitive, integrated employment opportunities for those capable of achieving this level of employment, but they also insist on eliminating the current opportunities provided for those not capable or not desiring this level of employment.

The thinking behind this movement is that work centers are bad things that limit the individual’s capacity, and that given the opportunity to work in a competitive, integrated environment, all individuals will rise to their full capacity. Proponents of this movement, when forced to admit that some people will be shut out or left behind, speak as though this is an “acceptable consequence” of their plan. It is not. These are human lives. These are not disposable, expendable individuals. These people have families who love them and want the best for them.

There is no reason to accept these “acceptable consequences”, especially when there is no correlation between eliminating 14(c) wage certificates and investing in employment opportunities for individuals with disabilities. 

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The Raise the Wage Act has passed the House of Representatives and was introduced in the Senate. The Transformation to Competitive Employment Act has been introduced in the House and Senate with no other actions taken.

More posts from the DD News Blog on this issue.

Words Matter: The Language of Disability

The article below is from the November 9, 2018 VOR Weekly News Update by VOR’s Executive Director Hugo Dwyer. VOR, a “Voice Of Reason”, represents families and friends of people with severe and profound intellectual and developmental disabilities (IDD), including people with complex behaviors that put them at risk for seriously harming themselves or others. 

Most of the disabled individuals represented by VOR families and friends require an institutional level of care, whether the care is provided in an actual institution for those with the highest needs or in a community setting often funded by Home and Community-Based Services (HCBS) Medicaid Waivers. 

VOR supports choice from a full array of high quality options based on individual need. Many influential advocacy organizations, such as the ARC, promote “Community for All” and the elimination of institutional and other congregate settings, despite evidence of systemic problems and underfunding of community care. The results of poor quality community care lead to abuse, neglect, exploitation, and isolation, the very characteristics that have arbitrarily been assigned to institutions, regardless of the quality of care and the appropriateness of the setting to meet individual needs. 

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On Language: The "R" Word, the "I" Word, and the Subtext of Discrimination

by Hugo Dwyer

11/9/18

While attending the meeting of the President’s Committee for People with Intellectual Disabilities (PCPID) in Washington D. C. last month, I heard a number of participants mention their strong dislike of the “R” word. The general consensus was that the "R" word is hurtful, that it had been used to insult and marginalize people with intellectual disabilities. One speaker compared using the "R" word to using the "N" word.

We can all agree that the "N" word has always been a term associated with ignorance, racism, and hate. We can all pretty much agree that the "R" word has deviated from its original clinical usage to describe an intellectual condition, mental retardation, to become a derogatory, insulting, and disenfranchising term. As a result, we have stopped using the "R" word.

What struck me was the fact that most of the participants freely used the "I" word, Institution, as a demeaning term, without ever seeing the irony of their using this term in a manner that is hurtful, and disenfranchising to those who believe that Intermediate Care Facilities (ICFs) are the best solutions for a minority of individuals with intellectual and developmental disabilities, complex medical problems, and behavioral disorders.

ICFs are a legitimate, valuable component of our full continuum of care. They deliver a higher level of service for people with higher levels of need. ICFs are certified by CMS, and are thereby held to a much more stringent set of guidelines than HCBS waiver settings.

When members of the I/DD community derogatorily refer to ICFs as "institutions", their intent is often to invoke memories of the past, where people with I/DD were cruelly warehoused without treatment in places like New York's infamous Willowbrook State School or Pennsylvania’s Pennhurst State School and Asylum. Modern day ICF's bear no resemblance to those institutions. The use of the "I" word is just as hurtful, just as demeaning and marginalizing to our families as the use of the "R" word might be to theirs.

The families of people with severe and profound disabilities support the goals of inclusion and competitive employment for those who have the ability to participate in these environments. But we cannot help but feel marginalized and discriminated against by others in our own community, when we hear the word "institutions" used in a demeaning manner, when we are told that equivalent services are available in "the community",. Families who support these choices are often told that we are uninformed, afraid of risk, or that we just don't care enough for our loved ones to put them into waiver settings. That is hurtful. That is demeaning. That marginalizes us.

It's time for us all to acknowledge the breadth of the disability community, and work to support one another in our individual goals of making better lives. Please don't allow others to use the "I" word to demean and marginalize those who make this choice.

Tom Dwyer's message to the President's Committee for People with Intellectual Disabilities

Hugo Dwyer is the Executive Director of VOR, a "Voice Of Reason speaking out  for people with intellectual and developmental disabilities". He traveled to Washington, D.C. in November to deliver a birthday message about his brother Tom, a resident of Southbury Training School in Connecticut, an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID). This appeared in the Winter 2018 edition of the VOR Voice.

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Executive Director’s Message: Tom Dwyer Speaks to The President 

My brother Tom turned 62 on November 8th of this year. He lives at the Southbury Training School, a state-operated ICF in Connecticut. STS has been Tom's home for his entire adult life, and I can honestly say that I don't believe Tom would be alive today without the quality care, love, and community that STS has given him.

Tom probably doesn’t know what a birthday is. He is severely developmentally disabled. Tom has autism, bi-polar disorder, Pica, Parkinsonism, and what was once called profound mental retardation. He has one detached retina and his vision is poor. He uses a wheelchair but he can be walked with a gait belt. And Tom is non-verbal.

I did not go to Connecticut to bring him his birthday present that day. Instead, I took a train down to Washington, D. C. to give him his gift. I went to Washington, D. C. to give Tom a voice.

I attended a meeting of the President’s Committee for People with Intellectual Disabilities (PCPID), hosted by the Administration for Community Living (ACL). I addressed the committee on behalf of Tom and on behalf of all of our loved ones with severe/profound intellectual and developmental disabilities. My voice, Tom’s voice, your voice, was the only voice that spoke on behalf of the most severely impacted members of the I/DD Community.

No one told me that the public wasn’t allowed to address the Committee at this meeting. Fortunately, no one had told the first speaker that either. When the Liaison from the Office of Health and Human Services to the Office of the President finished his opening remarks, centered around the committee’s intent to speak about Competitive Integrated Employment, he asked if there were any questions. I put up my hand, and not knowing any better, he picked me.

I introduced myself to the committee, and told them about Tom, that it was his birthday and I was there to speak for him, and for our VOR families with loved ones who need and want services in Intermediate Care Facilities (ICFs). I told them that our families have been marginalized and overlooked for decades, our preferred services closed down or cut back, that admissions to ICF’s have been closed in many states, including at STS. I told them that we were being denied our right to choice, and that as parents and siblings and guardians, we had the right to make these choices. I went on to say that many other individuals with intellectual disabilities are being denied the opportunity to work in center-based employment with specialized wages. The choice of sheltered work environments is being denied by people who see this as detrimental to the wishes of those who seek competitive employment. I told them that our voices have not been heard in their meetings, and that I was there in hopes that the more severely intellectually disabled populations would have a seat at the table at the President’s Committee for People with Intellectual Disabilities.

After I spoke, the committee announced that members of the public were not to be granted the opportunity to speak at this meeting. Except for two women who had been hired as ASL interpreters if needed, I was the only person attending as a member of the public. But I stayed and watched and introduced myself to individual members when on breaks. I made sure the members of the committee were very aware of who I was and who I was there to represent.

The President’s Committee appears to have already set their agenda. It will focus on the less severely impacted members of the community, their hopes for inclusion, for integrated competitive employment, even for attending college. These are all noble, admirable goals. We all want all of these things for all of these individuals and their families. Inclusion is fine, but we want our loved ones to be included, too. A report to the President of the United States about the community of people with intellectual disabilities is not complete if it excludes the most severely intellectually disabled.

I hope that the Committee did hear Tom’s voice that day, and that they will see fit to invite our families to be part of their discussions next year. And I hope that maybe someday, Tom’s voice will be heard by the President himself. Or herself, if it takes that long.

Hugo Dwyer

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See also, 

"Disability Housing: Institutional Avoidance" by Micaela Connery, The Huffington Post, 12/6/17: "Institutions aren’t a failure of the past, they’re a reality of the present."

Southbury Home and School Association

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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VOR Comments Part 1

Olmstead Resources

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

Guardianship vs. Supported Decision Making