U.S. Department of Labor holds stakeholder listening sessions on special wage certificates that support employment for many with I/DD

The U.S. Department of Labor (DOL) is conducting stakeholder engagement sessions as it reviews the use of 14(c) compensatory wage certificates for people with intellectual and developmental disabilities (I/DD). These are used by employers to make possible work programs that employ people who are unable to participate in regular competitive, integrated employment for reasons related to their disabilities. 

Section 14(c) of the FLSA (Fair Labor Standards Act) authorizes employers, after receiving a certificate from the Wage and Hour Division, to pay subminimum wages - wages less than the Federal minimum wage - to workers who have disabilities for the work being performed.

According to a Department of Labor website, Michigan businesses employ about 800 people under this federal program.

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From the VOR Weekly News Update for October 27, 2023:

The first session was held on Thursday, October 26, 2023.

DOL - Additional Section 14(c) Stakeholder Engagement Sessions Announced

In addition to last night's session [10/26/23], DOL is offering two more opportunities for families to speak on the importance of providing more options for people with I/DD and autism, rather than reducing the number and variety of services available.

NEW:

Stakeholder Engagement Session #2: 
November 01, 2023, from 2:00 to 3:30 PM ET.
Members of the public wishing to participate must register in advance of the meeting by October 30 [Sorry! Registration is closed for this session]

Stakeholder Engagement Session #3: 
November 15, 2023, from 5:30 to 7:00 PM ET.
Members of the public wishing to participate must register in advance of the meeting by November 1. Click here to register

For more information about these sessions, please click here

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Last Night's [10/26/23] Session

Last night's session ran nearly two hours. Participants were given 2 minutes to speak about their experience and their views on 14(c) programs.

The first to speak was a representative from Microsoft, who announced that they oppose 14(c) programs, because they believe everyone with I/DD or autism can work for minimum wage or better. They announced that they had opened up over 500 jobs in competitive integrated employment.

Microsoft's statement was allowed to run nearly 5 minutes, The two minute time limit was imposed after their representative delivered their prepared statement. This was, once again, a grim reminder that powerful organizations hold much larger influence over policy than do individuals or families of people with IDD and autism.

Our friend Kit Brewer, a provider of 14(c) services and VP of the Coalition for the Preservation of Employment Choice, later spoke, thanking Microsoft for opening up 500 competitive jobs, but countered that providers in the State of Missouri have provided employment to over 5,000 people who prefer to work in sheltered workshops under 14(c).

VOR's Dawn Kovakovich spoke of her daughter's growth over her adult life that is a direct result of her engagement in sheltered workshop. She also told the attendees that the best explanation for the need of 14(c) programs can be found in Chapter 4 of Amy Lutz; book, "Chasing the Intact Mind".

Several self-advocates spoke of their feelings that people with I/DD or autism working for less than minimum wage was hurtful or degrading to them personally (that is, to the self-advocate, not the person who is working in the environment of their choosing). A representative from Diability Rights Kansas also spoke against sheltered workshops.

Hugo Dwyer of VOR spoke of the difficult choices that families are forced to make throughout their lives to ensure what is best for their loved ones with I/DD and autism. These choices vary, depending on the individual in question and the options available, and how members of the disability community should work together and support each other's choices, even if those are not the choices they have made. We should support each other, empathize with each other's challenges, and respect the choices that each of us make.

It is vitally important that VOR members sign up to speak at these meetings. Every voice in favor of 14(c) programs is needed, to help preserve these opportunities for those families who benefit from them.

At least four people from Maine's Deaf community were murdered in the mass shooting in Lewiston

October 30, 2023

In all, 18 people were killed and 13 wounded in a mass shooting on October 25, 2023.

This is from an Associated Press article, "Maine’s close-knit deaf community grieving by Patrick Whittle, 10/28/23. It also appeared in the Detroit Free Press on Sunday, 10/29/23.

“FALMOUTH, Maine – Maine’s closeknit community of deaf and hard of hearing people is grieving in the wake of the Lewiston shootings that killed beloved members, many of whom were ardent advocates.”

Joshua Seal, 36, Billy Brackett, 48, Steve Vozzella, 45, and Bryan MacFarlane, 41, were all associated with the the Maine Educational Center for the Deaf and the Governor Baxter School for the Deaf located in Falmouth, near Portland, ME. 

Seal had four deaf children who were all connected to the institutions’ educational programs, and Brackett attended the school and had a daughter who was in early intervention. MacFarlane also attended the school as a student and Vozzella’s wife, Megan, was an alumnus of the school, according to the article.

This is a sad reminder that none of us is free from the risk of being victims of gun violence, or a survivor of gun violence and living with the disabilities and psychological trauma caused by these events.

Possible Effects of a Government Shut-down

A totally unnecessary and irresponsible shut-down of the Federal Government may occur as early as Sunday, October, 1, 2023. This is promoted by MAGA Republicans in the House of Representatives and opposed by Democrats along with a few House Republicans. As we wait for sanity to return, here is an e-mail from Representative Debbie Dingell from Michigan's 6th District.

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Dear Friend,

Funding for the federal government expires on September 30, and we are working every day to do everything possible to prevent a government shutdown. A shutdown would be irresponsible and could cause uncertainty and harm to many programs and people. It is not the way to run the government. Unfortunately, not everyone agrees. This letter is to help you plan for a possible federal government shutdown, and we have tried to provide answers to the most frequently asked questions. We will continue updating my website with information as we receive it, and you can sign up to receive my email updates here. Should you have issues or need help, you can contact any of my offices and we will do the best job we can in assisting you during these challenging times.

Will I continue to receive my Social Security and SSI checks?

Recipients will continue to receive their Social Security and SSI checks. The Social Security Administration (SSA) will provide limited services like issuing Social Security cards and holding appointments for benefit applications. However, SSA will stop services like benefit verifications and processing overpayments. Customer service wait times will dramatically increase.

Will Medicare and Medicaid benefits be affected? 

Current Medicare, Medicaid, and disability insurance beneficiaries will continue to receive their benefits assuming a shutdown lasts less than three months.

What happens to veterans' services?

All Veterans Affairs (VA) medical facilities and clinics will remain operational. The VA will continue to process veterans’ benefits. However, veterans will be affected by the shutdown of other services that they count on, including education and job training, support for veteran- owned businesses, and even assistance for homeless veterans.

Which federal employees keep working during a government shutdown?

When the government shuts down, federal agencies are required to classify their employees whose salaries have lapsed as either "excepted" or "not excepted." The employees classified as "excepted" work without pay during the shutdown. The employees classified as "not excepted" are put on unpaid furlough.

What is the impact on U.S. military personnel and federal law enforcement?  

All active-duty and Guard and Reservists on active-duty orders are excepted and therefore are required to work without pay. On-base non-acute health care will cease, although off-base care provided through Tricare will not be affected. On-base child care will be open on a case-by-case basis. Federal law enforcement will also be required to work without pay for the duration of a shutdown.

Will military and federal retiree benefits be suspended?  

Military and federal retirees will continue to receive their retirement benefits. Processing new applications or other requested changes will be delayed.

Will air travel be affected?  

Air traffic controllers, Transportation Security Administration (TSA) officers, and Customs and Border Protection (CBP) agents will remain on the job without pay. If some do not report to work, as has happened in prior shutdowns, there will be significant delays and longer wait times across the country.

What does this mean for disaster relief efforts?

Federal Emergency Management Agency (FEMA) staff will still respond to emergencies, but all long-term projects will be delayed due to a lack of funding in the Disaster Relief Fund.

How will this affect environmental protection and cleanup?  

The Environmental Protection Agency (EPA) will stop inspecting most hazardous waste sites, as well as drinking water and chemical facilities. Efforts to address dangerous contaminants like PFAS — which are linked to severe health effects, including cancer — will be delayed, and cleanup activities at Superfund sites will slow or cease.

What is the impact on food assistance?   

The Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) will quickly run out of funding and be unable to provide food for children and parents in need. In the case of a prolonged shutdown, Supplemental Nutrition Assistance Program (SNAP) benefits may also be affected.

What is the impact on food safety activities?  

Food and Drug Administration (FDA) food safety activities — such as routine inspections of facilities — will be delayed across the country.

What is the impact on housing?

The Federal Housing Administration (FHA) will stop insuring some new mortgages and the Department of Housing and Urban Development (HUD) will stop processing some new loans. The Department of Agriculture (USDA) will stop new loan and loan guarantee activity. The VA will continue to guarantee home loans. Funding for federal housing assistance programs, such as Housing Choice Vouchers, may be jeopardized in a prolonged shutdown.

How will this affect small businesses?  

The Small Business Administration (SBA) will stop processing new business loans, such as through the 7(a) and 504 programs. However, SBA’s Disaster Loan Program will continue regular operations.

Will my mail still arrive?   

Yes. The U.S. Postal Service is not affected by a shutdown.

What does this mean for medical research?

The National Institutes of Health (NIH) will be forced to delay new clinical trials. New patients who are waiting for a chance at new treatment through a clinical trial will be turned away.

Will I still be able to visit National Parks and monuments?

Across the country, services that require National Park Service staff — including trash removal and operating campgrounds and concessions — may be stopped. Closures will be determined on a location-by-location basis; open-air parks and monuments in Washington, D.C. will likely remain accessible. Smithsonian museums may also be impacted by a lengthy shutdown.

How does this affect State Department operations?

Consular services, passport services, and visa services are expected to continue in the immediate aftermath of a government shutdown. In a prolonged shutdown, passport and visa issuance could be slowed. Access to passport agencies located in some government buildings may be limited.

What is the impact on state and local services?

The federal government shutdown will not immediately affect any state or local services. However, with federal funding cut off, some state or local governments may have to change their operations. Check with state and local agencies for specific questions.

For more updates, sign up to receive my email newsletter here.

Sincerely,   Debbie Dingell Member of Congress

P.S. You can share a story or contact me anytime about health care or other issues through my website. You can also receive real-time updates by following me on Facebook, Twitter and Instagram

Cancer Screening Survey for People with I/DD

VOR received this request for participants in a survey of parents and caregivers of people with I/DD (Intellectual and Developmental Disabilities) regarding cancer screening for people with I/DD.

From VOR:

We received a request from a young woman who is conducting a survey on cancer screening of people with intellectual disabilities for her Master's Thesis. Her letter and a link to the study are attached below.

We hope that those of our members who have loved ones with I/DD who have had cancer screenings will participate in this study, not only to help protect the interests of the I/DD population as a whole, but to make sure that those with more severe/profound I/DD and autism are well represented in the study.

[to contact VOR, email info@vor.net]

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To Whom It May Concern,

My name is Jennifer Ryan, and I am a second year Master’s Student in the University of South Carolina Genetic Counseling Program. For my thesis research, I am working to survey parents and caregivers of patients with intellectual disability in regard to patients’ experiences with cancer screening.

Patients with intellectual disability have around the same risk to develop cancer during their lifetime compared to the general population, but are screened for cancer at much lower rates. Through my research, I am hoping to gather family and caregiver perspectives and opinions in order to break down barriers to care and to provide resources to these individuals to help them obtain routine screenings.

A poster about my research is attached and the link to complete the survey is: https://redcap.healthsciencessc.org/surveys/?s=L8MX44TYMHFHN3YE.

Thank you for your time and consideration. Please feel free to reach out to me if you have any questions about the project.

Best,
Jennifer Ryan

Please contact jlr19@uscmed.sc.edu with any questions

September 26th Project Video 2023 from the National Council on Severe Autism

 

From the National Council on Severe Autism: Every year, around September 26th, we provide reminders, inspiration and information to autism and special needs families about emergency preparedness, in honor of the late Feda and Muhammed Almaliti, who perished in a tragic house fire on September 26, 2020. This year's video focuses on the story of Denise Lombardi, an autism mom in upstate New York who felt a call to take action and become a firefighter herself. We hope all autism families will take just 10 minutes every September to consider what steps, even very small steps, they can take to be prevent disaster. Our website -- September26.org -- offers checklists, and our videos, social media, podcasts and webinar offer ideas and help. Sponsored by the National Council on Severe Autism NCSAutism.org.

 

Autism Confidential: a podcast from the National Council on Severe Autism

The National Council on Severe Autism sponsors a mostly weekly podcast that is available from the usual Podcast platforms and on Youtube.

I do not have a family member with autism. My two sons, Danny, who died last year at the age of 46, and Ian, who is 38 years old, experienced profound intellectual and severe physical disabilities from birth. My cohort of parents and other family members who care for people with profound intellectual and developmental disabilities are not exactly in the same club with these autism parents, but we are just down the hall, with many overlapping issues and similar concerns about the romanticizing of disability, the inability of many advocates to acknowledge the severity of the most profoundly disabled people, and a tendency to blame parents for making people with disabilities look bad because parents insist on speaking truthfully about their own children.

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From the NCSA website:

"Welcome to Autism Confidential, the podcast from the National Council on Severe Autism. We shine a light on the hottest issues in the world of autism, including topics often shunned by conventional media. Who cares for autistic adults after their parents die? How can we fix our broken care system? What interventions help, or hurt? Join hosts Jill Escher, Amy Lutz and others from NCSA as they take on the hardest questions of autism with leading thinkers and doers."

Find it on Apple here
Find it on Spotify here
Find it (with video) on YouTube here

Have ideas for episodes or speakers? Please email us
 at NCSA Admin <info@ncsautism.org>

Interested in becoming a sponsor? Please email us at NCSA Admin <info@ncsautism.org>

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Jill Escher is a podcast host with just the right combination of personal experience (two of her children have profound non-verbal autism) and technical expertise to offer engaging weekly interviews on a variety of topics with family members and experts in the autism world.

For a description of Jill Escher’s busy life, see her webpage. 

Part of what she does is promote and fund research “on the genetic toxicology of autism and related neurodevelopmental pathologies” which sets the scene for the very latest podcast from Autism Confidential, Episode #044, entitled “Autism Research Roundup”. Her guest is Dr. Alycia Halliday, chief Science Officer of the Autism Science Foundation. Jill and Alycia (also an autism parent) debate the role of genetics as a cause of autism. Genetics is responsible for possibly 20% of autism cases, but much of autism is unexplained or not understood. Jill is a proponent of looking at other causes and there is good-natured sparring on the current debate on causes. The two also discuss studies on early intervention that show improvement in functioning in young children, but early intervention is not shown to overcome the disability. One thing they agree on totally is that no one should take medical advice from Tik-Tok videos.

I love this stuff, but I know not everyone is enthralled with the science-y part of disability. I also love local heroes who do things rather than just talk about them. In Episode #042, Jackie Ceonzo from New York City is a local hero that I would like to meet. She is the founder of SNACK* that provides recreational classes and instructional programs for kids and young adults, located in Midtown East, NYC. Jackie’s autistic son is among those who was constantly rejected for being too autistic. She took matters into her own hands (with the help of many others) and developed a center where her son “…Joey and other children with special needs would be welcome, regardless of their language abilities, behavioral challenges or skill level. She envisioned a place where parents and children would feel comfortable socializing and learning life and recreation skills in a creative and safe environment.”

Episodes #37 and #38 deal with “Dental Care for Patients with Autism, with Dr. Allen Wong.  “By popular request we are featuring two episodes devoted to all things teeth and dentistry, which looms as a huge issue for autism families. Allen Wong, DDS, is Director of Advanced Education in General Dentistry, Residency Program, University of the Pacific. He teaches dentistry for special health care needs, and hospital dentistry as well. Daily tooth care can be difficult for severely autistic kids and adults, and accessing clinical care can be especially difficult when there is a very sensitive or uncooperative patient.”

In Episode #33: "Bridging the Divide", the podcast veers boldly into the divided autism community with Morénike Giwa Onaiwu, a prominent neurodiversity advocate. “…We were thrilled when she agreed to join us for a special episode about the splintered autism community. We had a productive conversation, and spoiler alert, not many sparks flew. In reality, we found we had much more in common than not, and share a passion for tangible progress in the field of lifespan autism care and housing.” 

My favorite observation from Morénike was that there are horrible people everywhere. I can agree with that, even when I don't much like the neurodiversity movement’s attempt to describe all disability as part of a normal continuum of human experience.

Episode 29: Just Say No to the Bullying of Autism Parents

"Pioneering autism advocate Thomas McKean joins us again...to discuss the bizarre online phenomenon of anti-parent bullying by militant autism self-advocates. Like witch hunts of yore, autism parents are too often accused, without evidence, of all manner of sins: torturing their children, infantilizing them, of self-aggrandizement, of ableism, eugenics, and more. Tom McKean says 'Enough!' to this nonsense in an emotional discussion with NCSA's Jill Escher. Please listen to the very end for Tom's gorgeous, spontaneous soliloquy about the profound love autism parents have for their children."

Episode 27: Thriving with Severe Autism at Bittersweet Farms

This is close to home. Bittersweet Farms, near Toledo, Ohio, is “a pioneering model of a farmstead-based residential and day program serving adults with autism complex behavioral needs. In a world where severely autistic adults are routinely rejected from programs, Bittersweet is a rare treasure. We talk with Dustin Watkins, the program's executive director, about the nature of the programs, the benefits of an outdoor, open-space setting for many adults with autism, the meaning and purpose of their physical and creative efforts on the farm, issues around Medicaid ICF and HCBS models, staffing challenges, the community and connection found in programs like Bittersweet, the financial model, and more. “

And then there is Episode 18: The Poop Episode by Dr Joyce Tu and Kelly Bermingham, which is to say that the podcast has something for everyone.

VAERS reports on adverse events from vaccines are unverified claims and do not support claims of deaths from vaccines

Activist Misuses Federal Data to Make False Claim That Covid Vaccines Killed 676,000

By Tom Kertscher, PolitiFact 

September 1, 2023

Covid-19 vaccines have killed 676,000 Americans. 

Steve Kirsch in an Aug. 6, 2023, blog post

A blog post shared on Facebook claimed that covid-19 vaccines have killed some 676,000 Americans.

The post was written by anti-vaccine activist Steve Kirsch, who has made other vaccine claims debunked by PolitiFact and other fact-checkers. 

Kirsch’s Aug. 6 post referred to the Vaccine Adverse Event Reporting System, a federal database.

“VAERS data is crystal clear,” the headline read. “The COVID vaccines are killing an estimated 1 person per 1,000 doses (676,000 dead Americans).”

The blog post was shared on social media and flagged as part of Meta’s efforts to combat false news and misinformation on its News Feed. (Read more about PolitiFact’s partnership with Meta, which owns Facebook and Instagram.)

The data Kirsch used is from an anti-vaccine group’s alternative gateway to VAERS. VAERS, which includes unverified reports, cannot be used to determine whether a vaccine caused death. Kirsch did not reply to our request for information.

“Statements that imply that reports of deaths to VAERS following vaccination equate to deaths caused by vaccination are scientifically inaccurate, misleading and irresponsible,” the Centers for Disease Control and Prevention, which co-manages the database with the FDA, told PolitiFact.

The CDC added that it “has not detected any unusual or unexpected patterns for deaths following immunization that would indicate that COVID vaccines are causing or contributing to deaths, outside of the nine confirmed” thrombosis with thrombocytopenia syndrome, or TTS, deaths following the Johnson & Johnson/Janssen vaccine, which is no longer offered in the U.S.

TTS, which causes blood clots, has occurred in approximately four cases per million doses administered, according to the CDC.

VAERS helps researchers collect data on vaccine aftereffects and detect patterns that may warrant a closer look.

The CDC cautions that VAERS results, which come from unverified reports anyone can make, are not enough to determine whether a vaccine causes a particular adverse event.

For the covid vaccines, VAERS has received a flood of reports, and they have become especially potent fuel for misinformation.

Kirsch made his claim not by using VAERS directly, but with an alternative gateway to VAERS from the anti-vaccine National Vaccine Information Center. 

That website draws on raw and limited VAERS reports, which can include incomplete or inaccurate information. These reports do not provide enough information to determine whether a vaccine caused a particular adverse event.

 There is no evidence that covid vaccines have killed Americans in large numbers, let alone 676,000. We rate the claim Pants on Fire!

Our sources

Steve Kirsch’s newsletter, “VAERS Data Is Crystal Clear: The COVID Vaccines Are Killing an Estimated 1 Person per 1,000 Doses (676,000 Dead Americans),” Aug. 6, 2023 

Health Feedback, “VAERS Data Don’t Show That COVID-19 Vaccines Are Deadly; Steve Kirsch’s Claim to the Contrary Relied on Flawed Analysis,” Aug. 6, 2023

Facebook, post, Aug. 8, 2023

PolitiFact, “How an Alternative Gateway to VAERS Data Helps Fuel Vaccine Misinformation,” Feb. 28, 2022

PolitiFact, “Federal VAERS Database Is a Critical Tool for Researchers, but a Breeding Ground for Misinformation,” May 3, 2021

Centers for Disease Control and Prevention, “Selected Adverse Events Reported After COVID-19 Vaccination,” July 13, 2023

Email, Centers for Disease Control and Prevention, Aug. 10, 2023

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT This story can be republished for free (details).

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.