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).

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

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.

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

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

Abelone Kelley June 16, 2021 0

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.

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

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.

******************
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?"

Abelone Kelley June 15, 2021 0

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.

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

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.

Abelone Kelley May 28, 2021 0

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.

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

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

Abelone Kelley April 27, 2021 0

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.

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

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

Abelone Kelley September 26, 2020 0

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. 

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

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. 

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

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.

Abelone Kelley October 16, 2019 0

PA Governor announces final decision to close two of four state operated facilities for people with IID without consulting residents, families, or state legislators

Polly on hiatus

After a long hiatus from The DD News Blog, I am picking up where I left off with Susan Jennings' compelling testimony before the federal Interagency Autism Coordinating Committee on July 23, 2019. 

Susan Jennings' severely autistic son suffered for years in abusive community care, often in a toxic over-medicated state, until the Jennings went to court and gained admission for their son to an Intermediate Care Facility for individuals with intellectual disabilities (ICF/IID). White Haven Center in Luzerne County, Pennsylvania, has the right combination of services to control his maladaptive behaviors and a setting that provides close supervision and the safety he needs to thrive. [See "Joey's Journey" for a full account of the ordeal that led to White Haven Center]

Three weeks later,  according to an AP report on August 14, 2019, the Pennsylvania  Department of Human Services (DHS) announced plans to close two of the remaining four state centers for individuals with intellectual disabilities, including Joey's home at White Haven Center: 

"The Department of Human Services said Tuesday that public meetings will be held next month to gather comment on the plans to close the Polk State Center in Venango County in western Pennsylvania and the White Haven State Center in northeastern Pennsylvania's Luzerne County"

The DHS declared that the decision to close these two facilities is final, but also admitted at a legislative hearing on 9/24/19 that the decision was arrived at without consultation with residents, families, facility staff, or legislators. 

The Pennsylvania DHS, according to the AP account, "....promised to work with residents and families, meet with potential community service providers and come up with 'individualized transition plans.' Officials said every Hamburg center [which closed in 2018] staff member who expressed interest in continued work for the state was offered a job prior to closure or in the one-year contractual placement period afterward." 

Residents and families, however, have the option of choosing to continue to receive ICF care if they disagree with the decision to move residents to community placements. This is a holding of the 1999 Supreme Court Olmstead decision that states that a person in institutional care may be moved to community care as long as the affected individual does not oppose treatment in the community. This stipulation is largely ignored by state agencies and advocacy groups who ideologically oppose institutions and tout the overwhelming success of community placements for people with IID. 

According to the Pittsburgh Post Gazette, 8/14/19, Peri Jude Radecic, CEO of Disability Rights Pennsylvania (Pennsylvania's Protection and Advocacy agency) approves of the facility closures and states that, “The Americans with Disabilities Act sought to end the isolation and segregation of persons with disabilities. Court decisions have affirmed the right to move and live in the community. For decades, our Commonwealth has demonstrated that state operated institutions can close and individuals can be moved into the community thoughtfully and safely.”  The Pennsylvania ARC has also expressed enthusiasm for these closures.

For a more accurate interpretation of the ADA according to the 1999 Olmstead decision, VOR has put together passages from Olmstead protecting choice with this introduction:

"...There is no inclusion mandate in Olmstead. Rather, the Court’s determination in Olmstead supports both the right to an inclusive environment and the right to institutional care, based on the need and desires of the individual. Olmstead guarantees choice for all
individuals, their parents, and guardians. Olmstead requires that those who are moved from institutional care to smaller, community-based group homes meet three distinct criteria to determine the appropriate residential setting. There is no mandate to deny access to institutions, to close institutions, nor to place at risk any individuals who need and choose institutional care."

The views of residents and families and others supporting Pennsylvania state facilities are expressed here, on the KIIDS website, ("Keeping Individuals with Intellectual Disabilities Safe...") and at a legislative hearing on "Open the Doors to Dignity" held on April 30, 2019.

The legislative hearing held on 9/24/19 included both support and opposition to the closing of state facilities. Highlights include testimony from John Hirschauer at 1:06 followed by Susan Jennings (White Haven), Irene McCabe (Polk Center), and Hugo Dwyer from VOR from 1:17 to 1:45.

Other interesting moments: 

There were numerous references in the DHS testimony to the amazing success of the closure of Hamburg Center last year. According to a report on the hearing from the Standard-Speaker, Hazelton, PA, 9/25/19, Celia Feinstein from the Institute on Disabilities at Temple University was one of only two witnesses from outside the DHS to testify in support of closure of the state facilities. She said Pennsylvania lags behind other states in moving people out of centers.

"She also said Temple followed people after they left the state Pennhurst Hospital that closed 32 years ago to find out if the move benefited them.

"'After many years of study, I can answer with a resounding 'yes,' Feinstein said. 'In every way we were able to measure it, people are better off.'"

Others were more concerned about the possibility of less than adequate care that residents might receive in community settings and were focused on the fact that of the 80 people moved from Hamburg Center that closed in 2018, 15 have died. 

One rationale given by DHS for not having consulted with residents, families, facility staff, or legislators before deciding to close two centers was that when the DHS floated the idea of closing Hamburg Center, it spooked workers into quitting and leaving residents insufficiently cared for. Apparently it has not dawned on the DHS that this could happen again, now that the centers that they want to close have been identified. To have care deteriorate as a center is closing is a familiar pattern that has been observed before. It has even been used as an impetus to families to move quickly in selecting a community provider, before all the "good ones" are taken.

There are 13,000 people on waiting lists in Pennsylvania for community services. Hugo Dwyer from VOR pointed out that people coming out of state facilities will be first in line to receive Medicaid Waivers to fund community services, thereby putting more strain on the system to serve people in community settings. According to the UCP Case for Inclusion 2019, page 9, although spending doubled on Home and Community based services from 2006 to 2016 and the number of people living in larger state institutions was cut in half, waiting lists for services tripled.

How have people with IID fared in other states when facilities closed?

Michigan closed its last state-operated ICF in 2009. The promise of appropriate care for everyone with a developmental disability in a community setting has not been fulfilled. "Michigan’s mental health system is failing many with severe autism" gives several examples of how people with severe autism who might have been better served in an ICF/IID are falling through the cracks and facing institutionalization in jails and psychiatric hospitals.

Georgia: The Augusta Chronicle has been following the tragic consequences of forcing people with developmental disabilities and mental illness out of institutions and into communities that are not prepared for them and are unable to meet their needs. "Report: Deaths, lack of housing plague Georgia system for disabled, mentally ill" by Tom Corwin, 8/26/19, relates how "An independent reviewer found that despite Georgia’s claims of compliance, a state health care system for the developmentally disabled and mentally ill is still inadequate." 

In 2010, Georgia reached a settlement with the U.S. Department of Justice to move residents of state facilities to community settings. According to the article, 

"An Augusta Chronicle investigation in 2015 found nearly 1,000 deaths among those patients in community care in both 2013 and 2014, and the state has twice halted moving them from state hospitals into community care over the lack of adequate care among those providers. In its last Annual Mortality Review that covered fiscal year 2017, Jones [the independent reviewer] noted that the death rate has continued to climb each year, from 12.5 per 1,000 in fiscal year 2015 to 16.4 per 1,000 in 2017.

“'Perhaps most significantly,' Jones notes, the death rate for those the state has already identified as high risk is anywhere from twice to four times as high."

Washington State: from Because We Care -- Beyond Inclusion 

in a series of Blog posts - "Stuck in the Hospital"

California: "Falling Through Cracks: When The Safety Net for Young Adults With Autism Spectrum Disorder Fails" by Eva Loeffler, 2/25/19

In Pennsylvania, there is bipartisan support from legislators, especially those from the affected counties, to have the state legislature review the decision by DHS to close two of its state-operated centers.

See also full coverage of the PA legislative hearing from the Standard-Speaker from Hazelton, PA:  "Advocates, Opponents Of White Haven Center Closing Head To Harrisburg For Hearing", 9/25/19.

Abelone Kelley September 30, 2019 0

VOR: Celebrating the 20th anniversary of Olmstead

Celebrating the 20th Anniversary of the Olmstead Decision: Opportunities and Choices 

VOR acknowledges the 20th Anniversary of the Olmstead Decision and celebrates in its opening doors to community living for people with intellectual and developmental disabilities (I/DD) who are able and wish to take advantage of such opportunities. The Court’s decision in Olmstead was balanced and comprehensive. It presented a road map for how to meet the aspirations of those seeking inclusion while protecting the needs of those with more severe intellectual disabilities. VOR is proud of the role that we played in presenting an amicus to the court, showing the need to include all people with I/DD in their ruling. 

Recently, the Department of Justice (DOJ), and the Administration for Community Living (ACL) issued press releases celebrating the 20th Anniversary of the Olmstead decision. Unfortunately, their ideological focus with one key part of Olmstead, “community integration”, at the expense of the other key part, “choice”, has reduced options for all people with I/DD and especially those with the most severe and profound forms of I/DD. Whether or not this is an innocent misreading of the ruling or a deliberate misrepresentation of the Court’s opinion, this limited interpretation of the plain language of Olmstead has done significant harm to many of our most disabled citizens. 

By insisting that all people with I/DD live in the community, the DOJ and ACL are treating people with I/DD as a monolithic group, not as unique individuals. DOJ and ACL are substituting the wishes of the government for that of the person with I/DD or, where relevant, the parent or legal guardian. While their policies have opened doors for the less severely disabled, they have closed important doors for the more severely disabled. Many of these individuals have lifelong needs that require a very high level of care, the kind often found only in public and private Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID). 

DOJ and ACL are pursuing this agenda in the name of the ADA and Olmstead, but that is not what the ADA and Olmstead call for. Both the statute and the Supreme Court case embody the best values of American society —nondiscrimination and choice. All of our civil rights laws contain both elements. Civil rights laws do not tell people where they must live or work. They guarantee individuals are not denied opportunities based on a particular factor, and they expand choices for individuals who have suffered discrimination. In sharp contrast, DOJ and ACL are using federal dollars to bring lawsuits and promote policies that needlessly and dangerous eliminate important options – ICFs/IID, sheltered workshops and facility-based day programs – that many of our most disabled individuals rely on and prefer over small community residences. 

In pursuing a one-size-fits-all ideology, DOJ and ACL are ignoring the vital rights of choice embodied in the ADA itself: As the Court clearly stated in Olmstead: 

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings . . . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it. Olmstead v. L.C., 527 U.S. 581, 601-602 (1999). 

In fact, the Court specifically incorporated the right of choice in the second prong of its holding: 

“(b) the transfer from institutional care to a less restrictive setting is not opposed by the affected individual,” Olmstead, at 587. 

Even DOJ and ACL’s concept of what constitutes the most integrated setting contradicts the view of Justice Ginsburg: 

“[For some individuals, no placement outside the institution may ever be appropriate. ‘Some individuals, whether mentally retarded or mentally ill, are not prepared at particular times - perhaps in the short run, perhaps in the long run - for the risks and exposure of the less protective environment of community settings;’ for these persons, ‘institutional settings are needed and must remain available.’ ” . . . Each disabled person is entitled to treatment in the most integrated setting possible for that person – recognizing on a case-by-case basis, that setting may be an institution” Olmstead, at 605. 

 Not only are DOJ and ACL ignoring the plain language of governing law and decision, they are ignoring the harmful effects of their policies. Journalists have time and again documented the high rates of abuse and mortality for our most disabled citizens who have been forced out of congregate care facilities into unprepared communities. Federal agencies should stop dictating the lives of the severely disabled, and instead, join hands with the community of individuals with I/DD to ensure that all people with I/DD receive quality services and supports wherever they choose to reside. 

The ADA and Olmstead are the beacons for providing more opportunities for people with I/DD, but they do not dictate one-size-fits-all solutions. They are to provide rights and protection for everyone. Individual choice among the widest possible range of quality living and occupational options is what is necessary to realize the goals of the ADA and Olmstead. VOR supports the full reading of Olmstead, making individual choice of services paramount and ensuring a full range of living and work options in order to meet the spectrum of needs of this very diverse population. 

******************************************************
VOR is a national organization that advocates for high quality residential and work options and human rights for people with intellectual and developmental disabilities. Established in 1983, VOR is a 501(c)(3) non-profit organization, governed by a volunteer board of directors and funded solely by dues and donations. VOR receives no government support. 

Abelone Kelley July 02, 2019 0