ACT Now for Severe Autism Campaign from Together For Choice

  

 Organizations supporting Act Now for Severe Autism: Voice Of Reason (VOR), National Council on Severe Autism (NCSA), ICF Advocates for Choice, Together For Choice (TFC), Autism Science Foundation (ASF), EASI Foundation, The Council of Autism Service Providers (CASP), RCPA

 

Group Warns of Escalating Health and Safety Crisis in I/DD Community

Releases Video to Increase Awareness

Calls to End One-Size-Fits-All Policy Solutions

[This video is extremely hard to watch, but it is real. I have known many families who have gone through this special kind of Hell. Not only do they face a daily struggle to keep their child safe from self-inflicted injuries, but they do it with minimal outside help and sometimes no sleep or any other form of relief. They are shamed and blamed by some disability rights organizations for somehow causing their child's disabilities. Rather than recognizing how extreme and different children and adults with severe autism can be from others with forms of autism that are not as debilitating, the neurodiversity movement  treats them as an embarrassment. People with severe autism belie the claim by some disability rights advocates that severe autism does not exist and that no special consideration is warranted.]

More from Together For Choice:

Together for Choice Joins with RCPA, Parents to Launch ACT Now for Severe Autism Campaign

Harrisburg, Pennsylvania – Together for Choice, a national advocacy organization formed to protect and advance the rights of individuals with intellectual and developmental disabilities (I/DD), today announced the ACT NOW for Severe Autism Campaign with a consortium of partners, including the Rehabilitation and Community Providers Association (RCPA), concerned parents and other advocates. The campaign seeks to shine light on the growing health and safety crisis involving individuals with severe autism and change policies that deprive them of the services they need.

“For too long, individuals with severe autism have remained in the shadows and all too-often forgotten in policy discussions,” said Ashley Kim Weiss, National Coordinator of Together for Choice. “Most of the attention and resources have been devoted to integrating high functioning members of the I/DD community into society, which we agree is important. Equally important, however, are the most vulnerable individuals with severe disabilities who can never fully integrate and are in desperate need of customized care and support to live healthy and productive lives.

The group promoted a video, which first debuted at the RCPA Conference held in Pennsylvania last week. A parent of a severely autistic child self-financed and produced the video to combat the increasing claims of the highly vocal and publicly visible advocates of the neurodiversity community, that severe autism does not exist. Or worse yet, that the needs of those individuals with severe autism are no different than the needs of any other individual diagnosed with autism.

“While the video is at times uncomfortable to watch, it is critical that the public see the realities that these individuals and families face on a daily basis,” said Richard S. Edley, President and CEO of RCPA. “We need more resources and more flexible policy solutions to address this growing crisis. One-size-fits-all solutions must end. We must recognize that one-size does not fit everyone. People will always be left out – and sadly, it is often the most vulnerable who are forgotten."

The group also launched a website at http://actnowforsevereautism.com/ which houses the video and contains a petition to end these policies as well as more information about how the public can get involved and advocate for change in policies that discriminate against individuals with severe autism and their families.

About Together for Choice

Together for Choice (TFC) is a non-profit organization with a mission to unite to protect and advance the rights of individuals with intellectual and developmental disabilities (I/DD) to live, work and thrive in a community or setting of their choice. Please visit www.togetherforchoice.org for more information.

About the Rehabilitation and Community Providers Association:

With well over 350 members, the majority of who serve over 1 million Pennsylvanians annually, Rehabilitation and Community Providers Association (RCPA) is among the largest and most diverse state health and human services trade associations in the nation. RCPA advocates for those in need, works to advance effective state and federal public policies, serves as a forum for the exchange of information and experience, and provides professional support to members. RCPA provider members offer mental health, drug and alcohol, intellectual and developmental disabilities, children’s, brain injury, medical rehabilitation, and physical disabilities and aging services, through all settings and levels of care. Visit www.paproviders.org for more information.

Contact for TFC:

Ashley Kim Weiss, National Coordinator

ashley@togetherforchoice.org

Contact for RCPA:

Richard S. Edley, PhD, President and CEO Rehabilitation and Community Providers Association (RCPA)

redley@paproviders.org

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. 

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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?” ...

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

Washtenaw County Commisioners seek citizen volunteers

Monday, October 4, 2021

This is news from the League of Women Voters Washtenaw County:

Washtenaw County Board of Commissioners seeks citizen volunteers 

The Washtenaw County Board of Commissioners is looking for citizens to volunteer for a slate of positions on various Boards, Committees and Commissions. The Board of Commissioners will make these appointments at its upcoming session on December 1, 2021 at 6:45 p.m. held virtually via Zoom due to the Covid-19 pandemic. APPLICATION DEADLINE IS OCTOBER 29.

Individuals interested in applying should submit a letter of interest and resume, including a home address, to the Washtenaw County Clerk’s office, Attention: Appointments, P.O. Box 8645, Ann Arbor, Michigan 48107. 

Letters and resumes may also be submitted via email to mulcihyr@washtenaw.org, via fax (734) 222-6528, or apply online at https://ewashtenaw.formstack.com/forms/board_application.

Those resumes received by October 29, 2021, will be submitted to the Board of Commissioners for its consideration on December 1, 2021. The appointments will become effective January 1, 2022.

You can access the list of openings here: https://www.washtenaw.org/CivicAlerts.aspx?AID=1789 

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Follow the link above for a description of the Boards that are seeking members and the specific requirements for selection. Even if you may not be the person they are looking for, you might know someone who is. Many of these Boards make decisions that affect you or your family member with a disability. 

 

COVID-19 - It's not a hoax and vaccination is not a plot to depopulate the world.

COVID-19 is still with us and probably will be for quite awhile. Our family is fully vaccinated, including our two boys who have multiple disabilities and live in a group home [they are 36 and 44 years old but I’m their mother and I get to call them "boys"] . None of us had significant side effects, although we have friends and acquaintances who had mild to somewhat severe side effects, such as fever, chills, aches, and pains. None of these effects lasted for more than a day or two. We have had one death in the extended family and friends who have experienced the disease in its most extreme form or continue to deal with long-term COVID symptoms that come and go with frustrating regularity. Our friends and relations are all glad they were vaccinated.

The squabbles over wearing masks to prevent community spread of the virus and assertions that the vaccine is more dangerous than it is beneficial are baffling and tiresome. The extreme view that COVID-19 is a hoax perpetrated by godless evil-doers is contradicted by the assertion (often by the same people) that the virus may indeed exist, but it’s no worse than the flu. The COVID vaccine is sometimes seen as a plot to depopulate the world or as an excuse to impose tyranny on patriotic citizens by forcing people to do things they don’t want to do. I have never bought the idea that “freedom” means getting to do whatever you want. Limits on this kind of freedom are not only imposed by government regulation but by the circumstances of one’s life - I have many stories to tell about how raising two boys with profound disabilities interferes with “freedom” as defined by getting to do whatever you want.

I am against tyranny as much as the next person, but I consider mask mandates in about the same category as the requirement to stop for red lights when I am out driving. Both are annoying at times, but do not restrict my freedom in any important way.

Civil disobedience can be an effective means to resist unjust laws and push for change, but this kind of resistance was never meant to come without consequences and individual sacrifice. Threatening and harrassing public health officials and school boards considering mask mandates is neither free speech nor within the scope of civil disobedience. Civil disobedience or other resistance to following public health mandates may mean that other people may not like you very much, but this is not an infringement of your right to free speech.

Most people with real lives do not have the time, energy, or expertise to refute every argument defending the point of view that COVID is not real or that the vaccine may kill you. Here is an article that may help: “The Backstory: My brother is one of millions who won't get the COVID-19 vaccine. I asked why. Here are his reasons, my responses.” by Nicole Carroll, USA Today, 8/6/21. The article includes numerous links to back up the facts presented by the reporter.

Here is a recent study reported by the Centers for Disease Control that shows that vaccination is more protective against reinfection with COVID-19 than relying on the natural immunities acquired during an initial COVID infection: “New CDC Study: Vaccination Offers Higher Protection than Previous COVID-19 Infection” available on the CDC Website, 8/6/21.

“In today’s MMWR, a study of COVID-19 infections in Kentucky among people who were previously infected with SAR-CoV-2 shows that unvaccinated individuals are more than twice as likely to be reinfected with COVID-19 than those who were fully vaccinated after initially contracting the virus. These data further indicate that COVID-19 vaccines offer better protection than natural immunity alone and that vaccines, even after prior infection, help prevent reinfections.”…

 

"The study of hundreds of Kentucky residents with previous infections through June 2021 found that those who were unvaccinated had 2.34 times the odds of reinfection compared with those who were fully vaccinated.  The findings suggest that among people who have had COVID-19 previously, getting fully vaccinated provides additional protection against reinfection."

More summer reading for COVID fanatics: 

“VIRUS - Vaccinations, the CDC, and the Hijacking of America’s Response to the Pandemic” by Nina Burleigh. I confess. I liked this book because it was short at 144 pages with a good overview of the virus so far.

“The Premonition - A Pandemic Story” by Michael Lewis. Michael Lewis is a compelling nonfiction writer who knows how to weave together the personal stories of somewhat obscure characters to make his point. 

This is hot off the internet: "Supreme Court won’t block Indiana University vaccine mandate as Justice Barrett rejects student plea.."

 Don't do this on your summer vacation:

Anti-masked protesters heckled people wearing masks, including doctors and nurses, and chanted “No more masks”.

Michigan businesses and organizations that hold special subminimum wage certificates for people with disabilities

Section 14(c) of the federal Fair Labor Standards Act allows the issuance of special wage certificates to employers of disabled workers who are unable to work successfully in competitive work settings for competitive wages. The special subminimum wage certificates have been used especially for vocational centers that serve people with severe disabilities who would otherwise not be employed. Vocational work centers often offer additional social services and specialized care for people with severe medical or behavioral problems. 

There are other 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. 

14(c) Certificate Holders in Michigan

From the U.S. Department of Labor, Wage and Hour Division

“The following employers hold or have applied for certificates issued under section 14(c) of the Fair Labor Standards Act. The certificates authorize employers to pay subminimum wages to workers with disabilities that impair their productivity for the work they perform. This list is current as of April 1, 2021.

“The list contains the following information: certificate type, employer name, employer address, whether the application for the certificate was an initial or renewal application, whether the employer indicated it held government contracts covered by either the Walsh-Healey Public Contracts Act (PCA) or the McNamara O’Hara Service Contract Act (SCA) at the time of application, and the number of workers with disabilities who were paid subminimum wages by the certificate holder during their most recently completed fiscal quarter. This data is based solely on information provided on the employer's certificate application. The list also includes the status of the certificate and certificate starting and ending dates.

“For certificates in 'pending' status, some columns are blank. All data is displayed for issued certificates.”

To find Michigan holders of 14(c) wage certificates, go to the spread sheet on the website that lists employers. Click on the column for "state". This will show states listed in alphabetical order with detailed information about employers using the special wage certificates.

There are 1,704 subminimum wage certificates in Michigan issued by the US Department of Labor. 13 businesses have wage certificates “pending”. If Congress eliminates these subminimum wage certificates, many these employees will either lose employment opportunies currently offered or they will be shifted to other programs, such as day programs, if they are unable to unwilling to participate in competitive employment. In the "Raise the Wage Act of 2021" there are no requirements for states to track what happens to these workers or to examine the fate of many workers who have been moved out of work center programs. There is an assumption in the proposed legislation that competitive employment works for everyone and when it doesn't, the federal government is not interested in hearing about it.

Myths and Facts about Vocational Work Centers

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

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

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MYTHS AND FACTS ABOUT VOCATIONAL WORK CENTERS

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

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

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

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

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

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

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

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

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

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See also:

VOR opposes part of the Raise the Wage Act 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Read more: 

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

"Subminimum Wage: Exploitation or Lifesaving?"