The Homes that Micki Built: "Mom with a Megaphone" by Micki Edelsohn

"If Joan Rivers and Mother Theresa had a baby, you might end up with Micki Edelsohn." --J. Escher  

This is a book review of Micki Edelsohn's "Mom with a Megaphone" posted with permission from the National Council on Severe Autism. I couldn't have said it better myself.

[Now available on Amazon!]

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

The I/DD Homes that Micki Built
February 6, 2023

Review: Mom With A Megaphone: My 50-Year Journey With My Son With An Intellectual Disability, by Micki Edelsohn, 2022 

By Jill Escher

If Joan Rivers and Mother Theresa had a baby, you might end up with Micki Edelsohn.

Edelsohn, a talkative dynamo of nearly 80 years of age, is a long-time leader in the field of housing for adults with intellectual and developmental disabilities (I/DD), particularly in Delaware where her all-volunteer Homes for Life Foundation has created 25 beautiful group homes and several condos, housing a total of 104 very lucky residents.

Now in her “twilight years,” as she puts it, this tireless do-gooder felt compelled to tell the story of her life’s work in order that the rest of us can pick up where she left off. Her book, Mom With A Megaphone, portrays a community housing pioneer consumed with worry about an increasingly bleak policy landscape. “We find ourselves in a perilous time for those who are most impaired and lack capacity,” she writes. “Where will they live and how will they spend their days?” She says the most vulnerable people in the disability community are being left out of disability policy decision-making.

I’ve been in this field long enough to see two kinds of disability advocates. In Camp One you find those who build, who create, who roll up their sleeves to constructively solve real-life problems and then pose with joy and a shovel at a groundbreaking. Here you will find Micki and other resourceful folk. 

But then there’s Camp Two — those who bloviate, inveigh, criticize, obstruct, spout ideological catch-phrases, and … do nothing to actually solve problems. The regrettable trend in disability advocacy over the past decade has been veritable warfare by a righteous, heavily funded Camp Two against a scrappy but exhausted Camp One, imperiling the future for adults who need supported housing.  

We see this drama play out across the arc of Edelsohn’s story.

We meet a young Micki who is so full of chutzpah that she launches over a fence to surreptitiously touch presidential candidate John Kennedy after he gives a speech. “If I’d done that today I would have been arrested, shot or tackled,” she reflects. Life was overwhelmingly normal. She goes to college, marries a nice Jewish doctor, has one son in 1968, and along the way develops an infatuation with American antiques.

Then in 1972, her second son Robert is born following a difficult breech delivery. Later, in the hospital nursery he stops breathing, and despite reassurances from staff, Micki instinctively knew something was wrong. In the following years Micki and her husband Lanny could see he was not developing normally, that he struggled to do things that came easily to his peers. As he entered school, “no one could really tell us what he needed.”

But with the passage of the Education of Handicapped Children Act (now IDEA), Robert’s was the first generation to benefit from special education from preschool to age 21, and he certainly makes progress, and learns to read. At age 13, he takes to the lectern for a modified Bar Mitzvah. But it was clear that he would always need supervision and support. They loved and accepted Robert “for who he was, not who we had hoped he would be.”

As Robert approaches adulthood, Micki begins to contemplate his adult living options, and ponders how she might go about creating a group home, having no experience but plenty of curiosity. That vague desire quickly turned into something much bigger. After schmoozing her way around Delaware, she met like-minded parents and generous donors, and before long her Homes for Life (HFL) Foundation was born.

By October 1990, four women moved into the first Homes for Life home. A partnership with Delaware’s MBNA bank proved essential to fundraising for the early homes, and the bank also provided employment for many HFL residents. This remarkable partnership, which presaged many of today's inclusive employment programs, included towel service at the corporate gym, helping manage MBNA’s mailing lists, and even silk-screening shirts.

Staffed only by volunteers, HFL was on a mission to create more and more and more homes, finding many individuals and foundations willing to contribute. Micki spent hours each day fundraising, working with the state DD agency and developers, and designing interiors to meet unique needs of the individuals. More homes were always needed, and after Micki created them — without government funding mind you — HFL deeded the homes to the Arc of Delaware, and debt-free! Micki worked so much magic she should have been crowned the fairy godmother of Delaware disability housing. Then the residents, who were handpicked by the state DD agency and not HFL, moved in and received staff support via Medicaid Home and Community Based Services (HCBS) waivers, a funding instrument for services provided in non-institutional settings.

Thanks to the HFL team’s fundraising and organizational prowess it was an astonishingly productive model. Despite some setbacks, such as opposition from neighbors who opposed group homes in their neighborhood, it went on to develop 25 homes, “representing 100 men and women with significant intellectual disabilities who now had a home for life,” Micki writes. “The satisfaction was hard to describe. The future looked promising.” HFL was celebrated, Micki received honors and awards for her innovative work.

In 2011 she was appointed to Obama’s President’s Committee for People with Intellectual Disability (PCPID), but inside the nation’s capitol she sensed a change. The mood was no longer one of constructive collaboration, but instead accusation, inflexibility, and dogma. Self-advocacy groups such as ASAN and SABE “wanted to define the meaning of community” in a narrow, one-size-fits-all way, a way that didn’t take into account the limitations, desires and needs of a wide swath of the I/DD population. Micki was appalled to see the Arc of the US even attacking its own affiliate for, gasp!, developing I/DD-friendly housing in Florida. Feel-good mantras like “dignity of risk” were tossed about to justify de-funding residential programs, sending a sinister message that disregarded the well-being of those with impaired judgment and cognition, and Micki recoiled. “When the consequences of risk taking are serious,” she writes, “there is no dignity.” Bingo.

The negativism that now predominated in the lavishly funded network of state DD Councils and other arms of the federally funded DD octopus like the Protection and Advocacy systems, and the Association of University Centers, was having harsh repercussions on the ground. Homes inhabited by adults with I/DD were prohibited from being in proximity to each other, because that was supposedly “too congregate.” Everything was suspect. Preposterously, advocates referred to HFL homes as “mini-institutions” as if a plush and spacious community home of four was akin to a seething Willowbrook housing 6,000. HFL homes went from being widely celebrated models that provided desperately needed “homes for life,” to suddenly “controversial.” One activist decried them as “non-inclusive" group homes (what did she want? to evict half the adults and replace them with Joe Schmoes instead? and how would that help?) The new Medicaid HCBS “Settings Rule” that disfavored disability-friendly options put projects serving those with the most severe disabilities in the crosshairs.

The real motivation behind the new inquisition, Micki contends, was not truly ideology but instead cost saving. Federal spending on HCBS for adults with I/DD was skyrocketing, and somehow it had to be contained. By limiting housing availability, a greater proportion of parents and families could do the heavy lifting instead. 

While Micki has no qualms about cost savings generally, she’s a realist. She is mostly worried about families and aging parents who cannot care for their loved ones. And she knows that in the end, a “setting” has little to do with the HCBS costs of care: “To put it bluntly, my son Robert will always need the same level of support whether he lives in a group home, intermediate care facility, intentional community, farmstead, condo with us in his natural family’s home, or in a tent in the backyard.” 

Micki rightly laments that Medicaid HCBS expenditures were supposed to be based on “person centered planning,” but lost in the heated debates over “settings” was any concern for the individual’s wants and needs. “The debate always seems to center on the location of the home, or the number of residents in the home or neighborhood,” she says, “not on the quality of care given.”

A grassroots effort that Micki helped form, called Families Speaking Up!, was one of the tiny Davids fighting a Goliath of taxpayer-funded DD agencies that opposed developments serving the most severely impaired, “making it an unfair fight.” Missiles were launched over every little thing. After Ford Foundation grant money supported a report by HFL about intentional communities serving adults with I/DD, a swarm of advocates complained to Ford, part of a “cancel” tactic to disempower Camp One. 

Things became truly “surreal,” she says. For example, on a Biden campaign Disability Platform call, a participant was condemned as “ableist” for simply using the word “severe.” The justice warriors squandered time and energy on breathtakingly trivial matters, all while HFL housing creation ground to a halt, denying dreams to disabled Delawareans.   The book closes with a return to son Robert, who now turns 50 and is now a happy man with many friends and activities. He leads a full life, but as his parents age his future is far from clear. The book also features a large amount of Appendix material, the first of which I admit is a 2016 essay by yours truly called “The Federal Government’s Quiet War Against Adults with Autism,” about dangers posed by the HCBS Settings Rule.

“Mom With A Megaphone” is ultimately a call for civility — and moreover, for appropriate services for all adults with I/DD. Micki sees immense diversity in the population, needing a huge array of options, and is sickened by “an unfortunate, senseless divide” that holds back progress millions of people so desperately need.

Jill Escher is president of the National Council on Severe Autism.

To receive a copy: Mom With A Megaphone is not currently available on Amazon or online. If you would like to receive a copy, please email NCSA at info@ncsautism.org and we will get back to you with ordering information. We will also post online ordering information when that is available.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.

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

P.S. My essay, "Danny at 40: Surviving the Inclusion Delusion" appears in the appendix of "Mom with a Megaphone".

Call to dismantle barriers to developing autism friendly affordable housing

When more than three or four people with disabilities live together, either out of friendship or to share resources with people with common interests and needs, some disability rights advocates condemn the practice and compare it to life in institutions of more than fifty years ago. Whether it is a group home or a larger intentional community or a publicly or privately operated facility, they are all bad according to these advocates.

Touring a 21-unit disability housing complex in Gilroy, CA, Jill Escher describes how congregate housing for people with autism and other development disabilities are needed to tackle the problem of serving and housing people with severe disabilities. 

Encouraging these projects is better than attempting to sabotage them in the name of disability rights. 

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

I visited a 21-unit disability housing complex and it was nothing remotely like an "institution"

A disability housing advocate calls for the dismantling of bureaucratic obstacles preventing the development of autism-friendly affordable housing.

by Jill Escher
8/31/21 

One of the most ludicrous and damaging battles waged by so-called “disability rights” activists is their deranged crusade to de-fund congregate-style residential facilities, which they routinely likened to “institutions” of old that once housed 1000’s of residents. It is of course nonsense, but this line of absurdist reasoning has already had a damaging chilling effect on needed developments aimed at the intensive needs of the autistic and developmentally disabled. Any development with more than a handful of disabled residents can become the target of immediate witch-hunt-like suspicion, and as a consequence, many projects die before they can get off paper.

This insane self-sabotage came to mind as I recently toured a lovely 20 year-old housing development in Gilroy, California, located some 30 miles south of the Silicon Valley area. Villa Esperanza was built in the late 1990s when it was still totally cool, and indeed noble!, to say, “We are creating housing for the developmentally disabled.” This was before groups like the Autistic Self Advocacy Network and others routinely hurled poisonous accusations at such developments calling them “isolating” and “institutional.”

The primary goal of Villa Esperanza, created by a nonprofit housing developer, was the provision of affordable housing for adult developmentally disabled individuals and their families. It received a construction loan (Section 811) from HUD and smaller loans as well. Other local nonprofits were involved in the planning, and now the administration. For the past two decades it has provided 21 units of desperately needed housing at affordable rates. The person with DD pays a portion of the rent (perhaps about $300, representing 1/3 of their SSI income), while the balance is paid by the county Housing Authority with HUD funds. Some tenants live independently, some with roommates, some with professional supports chosen by the client. Most tenants access the community on a regular basis and attend supported employment or day programs. The mini-campus also features a community room for social gatherings. 

As I toured the grounds I could only think, “Given the skyrocketing rates of autism, why are there not Villa Esperanzas everywhere? Why isn’t this model — a public-private partnership providing affordable, subsidized units to DD adults in a safe, serene setting — a go-to norm for our population?” ...

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

Read More at the Blog for the National Council on Severe Autism (NCSA)

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

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?"

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.

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

Proposals to raise the minimum wage for all workers may leave some workers with disabilities struggling with unintended consequences

The federal Raise the Wage Act was introduced in the last Congress in an effort to eventually raise the minimum wage to $15 per hour for all workers, including those with even the most severe disabilities. This has apparently been reintroduced as H.R. 603 and S. 53 and included in The American Rescue Plan. Besides raising the minimum wage for all workers, It would eliminate special wage certificates for people with severe disabilities. These 14(c) special wage certificates are authorized by the Fair Labor Standards Act and allow work centers (formerly called “sheltered workshops”) to pay workers less than minimum wage when their level of productivity prevents them from being competitive in the general workforce. These specialized work centers provide opportunities and special accommodations for people who would otherwise be unable to compete for jobs.

Elimination of the 14(c) wage certificates would ultimately lead to the closure of work centers that thousands of workers with intellectual and developmental disabilities (IDD) and their families rely on for meaningful employment and other benefits of a specialized work environment that accommodates the needs of people with the most severe disabilities. Although this has often been framed as a civil rights issue, no one is compelled to accept employment at a work center and the law provides protections for workers and requirements for employees designed to prevent exploitation. [See Fact Sheet on The Employment of Workers with Disabilities at Subminimum Wages]

In a recent news update, ACCSES, an organization representing providers of disability services, provides details of the Raise the Wage Act  and follows these with comments on the parts of the legislation affecting workers with disabilities:

“Before moving on to other news, we want to pause for a moment and talk about 14(c). At ACCSES, we see 14(c) as part of a continuum of paid work opportunities that increase options for people with the most significant disabilities. Neither this bill, nor others introduced in the past, will lead directly to more employment for individuals working under a certificate. It is not a binary choice. Rather, for many, it will eliminate an option that is highly valued and regularly coupled with other services, including competitive employment, which often provides for only a few hours of work per week.

“A great deal of energy is devoted to trying to eliminate 14(c). Imagine if all of that collective attention were repurposed to reducing the need for 14(c) by focusing instead on closing the vast competitive employment gap for individuals with disabilities, expanding options, educating commercial and nonprofit employers generally of the tremendous workforce available to them, finding legislative solutions that encourage more employers to hire people with the most significant disabilities, increasing funding for supported employment and customized employment, increasing funding for social enterprise models and apprenticeship programs, recognizing disability service providers as the foundation of the disability service system (including employment) rather than trying to exclude them or dismiss their incredible depth of knowledge and experience, and most importantly, honoring the legitimate choice of individuals to have the job they want. This could lead to more positive results than simply eliminating 14(c) and forcing people into unpaid work, day support programs (which is a perfectly fine choice for individuals and already available as an option) or leaving individuals with few options at all other than being at home. This pandemic has shown many of us how difficult it is to be isolated at home away from our communities for long periods of time. Moreover, it has underscored the trauma of job loss, which should not be overlooked.

“At no time has the federal government conducted an actual study as to what has happened to individuals in states where 14(c) has been eliminated as a work payment choice. A true, unbiased study should be undertaken as a first step before any movement to eliminate 14(c) or limit its use, as it will highlight where attention for positive change should be focused. There are numerous ancillary concerns that must be taken into consideration – social security asset limits, transportation, the unemployment rate generally as well as specifically in the most rural parts of our country, the movement toward robotic solutions for businesses, jobs leaving the U.S., and the economic impact on families of eliminating an option that is providing a source of consistency and community, etc. Taking a paid work opportunity from people who take pride in their work will not by itself lead to more paid employment options or opportunities. This is a complex issue, and it will take getting everyone around the table to sit down with open minds to come up with good ideas to increase opportunities, not to just take away an option. A solution that will deny some individuals the dignity of work or that denigrates their jobs is the ultimate demoralizer. This is what keeps us up at night."

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

More on specialized work centers, sub minimum wages, and supported employment from The DD News Blog.

More comments on non-competitive employment for people with intellectual and developmental disabilities

Testimony from 18 Missouri, an organization representing 6,000 families in support of people benefitting from non-competitive employment.

See more on Youtube.

Today, 12/15/19 is the last day to submit comments to the U.S. Commission on Civil Rights Regarding Section14(c) of the Fair Labor Standards Act. 14(c) allows employers to pay people with disabilities less than minimum wage based on their individual abilities and needs. Protections in the law make acceptance of non-competitive employment voluntary. Other employment opportunities are available for people with disabilities who want competitive employment for at least minimum wage through Vocational Rehabilitation agencies and supported employment services. 

Submit comments by email here, subminimumwages@usccr.gov . 

Although comments are due today, anyone can comment any time to the US Commission on Civil Rights.

The following are excerpts from a letter dated 11/14/19 from Jill Escher, President of the National Council on Severe Autism, to the US Commission on Civil rights regarding “non-competitive employment options with severe cognitive, functional and behavioral disabilities”. Read the full text of the letter here.

************************
National Council on Severe Autism
PO Box 26853
San Jose, CA 95159
info@ncsautism.org
ncsautism.org
November 14, 2019 

United States Commission on Civil Rights
Via email: subminimumwages@usccr.gov 

...We fully understand and appreciate that some individuals with disabilities have been paid less than their productivity warrants—clearly, justice requires that those individuals receive competitive wages. However, a substantial portion of the disability sector—namely, those with substantial cognitive and behavioral impairments who lack the ability to engage in work at a competitive level—require noncompetitive, highly supported options…. 

All Americans should have access to work, but elimination of 14(c) de facto excludes our severe ID population from the workforce based on the fantasy that all intellectually disabled adults could achieve competitive employment. A few more key points: 

• Given the staggering increase in the population with severe autism, we see a clear imperative to create vastly more, not fewer, options for day programming and supported forms of employment. …We need to maximize their person-centered options, including work that pays special wages based on less-than-competitive productivity.
• Subminimum wage work is but one benefit accruing to the significantly disabled clients. …A standard job supervisor is unlikely to treat seizures, change diapers, or handle getting punched or scratched, to put it mildly. The extremely valuable, though non-monetary, therapeutic dimensions should be considered before over-simplistically labeling subminimum wages as discriminatory. 
• 14(c) programs serving the significantly intellectually disabled provide a protected form of employment unavailable in the free market...the employee’s needs comes first, and profitability is not the prime endpoint. The nonprofit work is typically tailored to the particular skillset of the worker, a customization unavailable in the free labor market where individuals are expected to conform to pre-established performance standards...Disability advocates often accuse 14(c) wage programs of exploiting or abusing their disabled workers, but for severely challenged adults, the opposite is almost always true— the programs often protect clients from exploitation and abuse by offering protected employment. 
• No person with a disability is forced into 14(c) work, and wages are set carefully. … 
• Most workers with disabilities, for example physical disabilities, are already in the competitive market...As Harris Capps, the father of Matthew, who loves his job in an Ohio work center, states, "If a higher functioning individual is able to get a job providing a mandated minimum wage, surely, they already have the minimum wage law in effect to protect them." 
• When non-competitive workshops close, participants often end up idle at home, lonely and unemployed, or if they work at all, with decreased job hours and decreased total wages. Where is the data suggesting better outcomes for the severely disabled who are denied the opportunity to work? We have seen none. Slashing their jobs, leaving them to languish at home, detached from any community of peers, with no viable alternative discriminates against our most vulnerable. The ostensible “liberation” of requiring competitive employment obviously strands our most vulnerable citizens. At a minimum, 14(c) must remain intact for our subset who lack capacity for competitive employment. 

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

Fact Sheet on Subminimum Wages for People with Disabilities

The DD News Blog testimony to the USCCR

Testimony on special wage certificates for people with disabilities

December 13, 2019

To: The U.S. Commission on Civil Rights
From: Jill R. Barker, Ann Arbor, Michigan 

Re: Do 14(c) wage certificates violate the civil rights of people with disabilities?

Answer: NO, not with the protections properly enforced in current law and the availability of choices to meet individual needs.

I am the parent of two adult sons with profound intellectual and developmental disabilities (IDD). Despite the claims by many disability advocacy groups, that all people with disabilities can work in integrated, competitive work settings, my sons are not capable of work of any kind, although there are many services and protections that are afforded to them that improve and maintain the quality of their lives.

I also belong to local and national disability organizations that acknowledge a broad spectrum of ability and need and avoid proclaiming to know with absolute certainty what all people with disabilities can and can’t do. Only by empowering individual voices of people with disabilities (including legal guardians) and their families to advocate for their own needs and preferences will we ever get to a system of care and services that is in synch with the needs of this diverse population.

Special wages below minimum wage are permitted under Section 14(c) of the Fair Labor Standards Act for people with disabilities. The claim that these are inherently discriminatory is belied by the protections in law that make acceptance of these services voluntary and a choice among alternatives for employment.

According to a Fact Sheet from the U.S. Department of Labor, Wage and Hour Division, on “The Employment of Workers with Disabilities at Subminimum Wages”,

“The fact that a worker may have a disability is not in and of itself sufficient to warrant the payment of a subminimum wage.”

Special wage certificates allow people with more severe cognitive and other disabilities to work at their own pace in skill development centers (sheltered workshops, usually in community settings) and receive pay adjusted to their abilities and how fast they work. Special wages are below the federal minimum wage and are a way to subsidize employers who provide jobs to people who would otherwise not be able to compete for employment.

Wages must be commensurate with the individual’s abilities and productivity: “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;” … “any worker with a disability paid at subminimum wages, or his/her parent or guardian, may petition the Administrator of the Wage and Hour Division for a review of their special wage rates by a Department of Labor Administrative Law Judge.”

People with intellectual and developmental disabilities who wish to work in integrated competitive work settings for at least minimum wage should be eligible for ongoing supported employment services, usually funded by Medicaid Waivers.

With Medicaid and social security benefits and a variety of options available to people with IDD, it is hard to imagine that individuals who choose to work in non-competitive work settings are depriving themselves of their civil rights.

Depriving people with severe disabilities of an accommodation that allows them to engage in appropriate work is in itself discriminatory.

In an article from The Hill, “Eliminating subminimum wage waivers will harm hundreds of thousands of people with disabilities”, 8/10/2018, David Ordon writes,

“In 2014, 75 percent of individuals with I/DD receiving day or employment services through a state I/DD system were attending a sheltered or facility-based environment.

“This means that efforts to remove 14 (c) subminimum wage certificates are essentially targeting one group, and one group alone: people with disabilities who choose to attend sheltered workshops”.

Protecting the choices of people with severe disabilities also protects choice in general for all people with disabilities. Eliminating choices that some advocates don’t approve of may feel good to them in the moment, but using civil rights as a weapon to deprive people of needed services is unfortunately an excuse that is not lost on government agencies and legislators always looking for ways to cut costs for vulnerable populations.

Jill R. Barker
12/13/2018

A brief history of work centers for people with disabilities and subminimum wage

[The term "Sheltered Workshop" is used pejoratively by many advocacy organizations promoting the elimination of these programs. Other terms, such as facility-based or center-based work programs for people with severe disabilities are equally valid and often preferred by those who need and want these programs to continue, even when they pay less than minimum wage as allowed by law. Any of these terms mean the same thing as far as I am concerned.] 

A 1998 Technical Assistance Circular from the U.S. Department of Education on State Vocational Rehabilitation Agencies and Community Rehabilitation Programs gives some historical perspective on the origins of employment programs for people with severe disabilities:

"In 1938, President Franklin D. Roosevelt signed into law the Wagner O'Day Act to provide employment through the sale of products to the Federal government for persons who were blind. Congress amended this Act in 1971 as the Javits-Wagner-O'Day Act (JWOD) to also include Federal contracts for products and services and expanded the Act to provide employment opportunities for other persons with severe disabilities..."

The 1971 amendments to the act include expanded employment opportunities. State Vocational Rehabilitation agencies were encouraged to coordinate with Community Rehabilitation Programs (CRPs) that employ people at or above minimum wage, but also to provide “extended employment”. Extended employment is defined as "work in a non-integrated or sheltered setting for a public or private non profit agency that provides compensation in accordance with the Fair Labor Standards Act, and any needed support services to an individual with a disability to enable the individual to continue to train or otherwise prepare for competitive employment, unless the individual through informed choice chooses to remain in extended employment”[emphasis added].

One of the criticisms of the 1938 law is that it is old - sometimes the word "archaic" is used. Tell that to people receiving social security old age benefits based on a 1935 law, and I doubt that many of them will return their checks because the law is old.

A criticism of the 1971 amendments (JWOD) is that the people who passed the law were somehow unenlightened and did not believe, as many advocates now claim, that everyone with a severe disability can work in integrated, competitive employment. Thousands of people in center-based work programs and their families disagree. They need and value the types of employment and other services offered by these so-called archaic work programs. Many disabled individuals have tried integrated, competitive employment, and either could not find or keep a job or could not function in competition with other employees in integrated work settings.

Vocational Rehabilitation programs that train and provide services for people with disabilities for competitive employment are time-limited and the goals of these programs are out of reach for many people with intellectual and developmental disabilities (IDD). WIOA, the Workforce Innovation and Opportunity Act signed by President Obama in 2014, loosened up some of the requirements for vocational rehabilitation services, but it prioritizes integrated competitive employment above work in non-integrated work settings that may not be suitable for many people with IDD.

Supported Employment Services, are defined in the DD Act (The Developmental Disabilities Assistance and Bill of Rights Act of 2000) for people with IDD as follows:

The term 'supported employment services' means services that enable individuals with developmental disabilities to perform competitive work in integrated work settings, in the case of individuals with developmental disabilities

• for whom competitive employment has not traditionally occurred; or
• for whom competitive employment has been interrupted or intermittent as a result of significant disabilities; and
• who, because of the nature and severity of their disabilities, need intensive supported employment services or extended services in order to perform such work.

Supported Employment is often funded through Medicaid Waivers for people with IDD in integrated settings for at least minimum wage. These services can continue as long as needed, unlike vocational rehabilitation services that are time-limited. These services, however, can be very costly and not suitable for some people with more severe disabilities.

Work programs that hire people with more severe disabilities can obtain special wage certificates under the Fair Labor Standards Act to pay employees less than minimum wage, but commensurate with the individual's abilities and productivity. Wage certificates are threatened with elimination as are the programs that employ people with severe disabilities. The claim that these are inherently discriminatory is belied by the protections in law that make acceptance of these services voluntary and a choice among alternatives for employment.

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

See also, The DD News Blog "Fact Sheet on Sub Minimum Wages for People with Disabilities"

Comments needed by 12/15/19.

"VOR's Position on Sheltered Workshops"

The DD News Blog on supported employment