October 15, 2021
VOR Weekly News Update
VOR is a national non-profit organization that advocates for
high quality care and human rights for all people with
intellectual and developmental disabilities.
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
VOR & YOU:
VOR's Annual Fall Membership Drive

EVERY MEMBER GET A MEMBER

This campaign was started by Marilyn Straw, who served as President of VOR's Board of Directors from 1998 to 2003, and has been an active member since VOR was founded in 1983. Marilyn has been supporting VOR for 38 years!

"Now," she says, "It's up to you!"

It's quite simple. In order to increase our influence on Capitol Hill and with members of state and local governments, we constantly need to bring in new members.

And where do these new members come from? They come from members like you.

So now is the time to reach out to friends, family, and members of your community and ask for their support. Pass out our literature at meetings of your ICF family group, your DDS forums at the state capitol, at your loved one's vocational center, or any place you may be able to catch the ear of an interested party. Ask them to help support your family member with I/DD by supporting the national non-profit organization that gives a voice to those who have no voice.

"One member at a time. Every member makes a difference."
x - Harris Capps, current President of VOR's Board of Directors
The Fall Edition of the VOR Voice
is now available for download on our website


In this issue:

  • A message from Harris Capps, President of VOR's Board of Directors
  • Personal stories from VOR families
  • The temporary evacuation of Crossroads Louisiana in advance of Hurricane Ida
  • Our Executive Director's Report on VOR's recent advocacy in congress to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services in the Build Back Better reconciliation bill, and our efforts to protect sheltered workshops and Section 14(c) wage certificates from being eliminated by language in federal grant programs promoting competitive integrated employment.

Our friends at the
National Council on Severe Autism

have initiated a national campaign calling for categorical recognition of Severe Autism
in the
Diagnostic and Statistical Manual (DSM-5) of the American Psychiatric Association (APA).

VOR is a proud supporter of this effort.
Sheltered Workshops:
‘Subminimum’ Pay for Disabled Workers Moves Closer to Extinction
By Paige Smith, Bloomberg Law, Oct. 12, 2021
Nearly 80 miles outside of Washington, a low-slung, almost windowless building abuts train tracks. Inside, socially distanced people work at long tables, some for less than minimum wage. Linoleum floors and graphic signage conjure memories of elementary school.

This is where Benji K. reports to work five days a week, as he’s done for 28 years. He’s nearly 50 years old now, with a graying mullet and a firm handshake. Benji, identified by his first name to help preserve his anonymity, assembles screw kits for SouthernCarlson, a tool and supply distributor. He uses a customized and color-coded pegboard to methodically count out the required number of screws. Benji then puts the screws in individual plastic bags. He’s paid based on the number of screw kits he completes each day.

“This is my favorite right here,” Benji said, referencing the kits. “I did 50 yesterday.”

Benji is one of nearly 44,000 workers in the U.S. who legally earn less than the minimum wage solely because he has a disability. For many, their hourly pay is far lower than the federal minimum wage of $7.25. At Benji’s workplace in Virginia, workers earn an average of $5.46.

Employers can pay people with disabilities less than the minimum wage if they hold a “14(c) labor certificate.” The policy has come under scrutiny by disability advocates, businesses, states, and even Congress.

Some argue these workers shouldn’t be paid less than minimum wage under any circumstances because it’s discriminatory and amounts to “unjustified segregation.” Others say the program is the best chance for some people with disabilities to earn wages and feel productive. The law raises questions about whether the program offers work opportunities for people who otherwise might not have them, or if it exploits people with disabilities for low-cost labor.

“Their jobs are important to their self-esteem,” said Peter Berns, CEO of The Arc of the U.S., an advocacy group for people with intellectual and developmental disabilities. “We do really care what happens to these people, that they have employment opportunities, or that they have other good opportunities for how they spend their day.”

But Berns adds, “It is going the way of the dinosaur, so to speak. There are better ways to incentivize employers to hire folks with disabilities.”

A proposal that encourages states to end the program was included in the House Democrats’ $3.5 trillion dollar spending and tax reconciliation package. It would provide grants to states to support alternative business models or help workers find jobs elsewhere, in exchange for states ending the payment of subminimum wages over a five-year period.

The legislation is in line with a recommendation from the U.S. Commission on Civil Rights. Some Republicans oppose proposals to terminate the 14(c) program, and the reconciliation package’s ultimate fate in Congress is uncertain.

The Fair Labor Standards Act of 1938 created the certificate program under the law’s Section 14(c), a carve-out to legally pay people with disabilities a subminimum wage that’s remained on the books for eight decades.

Only certain disabled workers can be paid a subminimum wage under the FLSA, defined as individuals “whose earning or productive capacity is impaired by a physical or mental disability,” such as developmental disabilities, blindness, cerebral palsy, alcoholism, and drug addiction. Workers with disabilities are more widely protected by the 1990 Americans with Disabilities Act, which prohibits employers from discriminating against people with disabilities, including in pay.

Yet unemployment among people with disabilities has remained consistently high. The unemployment rate for persons with a disability was 12.6% in 2020, compared to 7.9% for those without a disability, according to U.S. Bureau of Labor Statistics data.

More than 43,900 workers are employed under the 14(c) program, according to Bloomberg Law data, and as of July 1, employers held 702 active certificates.

Debera Taylor, who is Benji’s boss, has served as chief executive officer of NW Works in Virginia since 2019. NW Works holds a 14(c) labor certificate and also offers other employment opportunities for workers with disabilities.
With the writing on the wall as states phase out 14(c) programs, Taylor’s goal is to transition away from that model and she is grappling with how to do so.

“What does that financial impact look like on the organization? Do we have to subsidize any of that contract?” said Taylor. For businesses, it’s not an easy task, but she said it will be possible for her company to remain viable if 14(c) ends.

She said the value NW Works offers, as well as their relatively low overall labor costs to companies, helps attract prospective businesses. Contracting with NW Works for workers who earn minimum wage or above is “still a lower cost solution” for companies looking to work with the organization, she said.

“It is a balance between, ‘how can we balance providing the production to the partner, the vendor partner, and hitting their goals, and still remaining a viable partner for them with the labor and what they pay for us?’” said Taylor.

She would, however, like to see the earnings cap raised for people with disabilities. Currently there is an earning ceiling of $1,310 per month for non-blind workers with disabilities, and workers who earn more than that are in danger of losing federal benefits like Social Security pay.
“If 14(c) goes away and we work our way out of 14(c) and we are paying our clients minimum wage or better, we need to make sure that we’re not putting their other benefits at risk,” Taylor said.

Taylor said workers paid under the 14(c) program fulfill jobs for manufacturers, but they also have flexibility because NW Works offers a range of activities for the people who enter the facility each day.

“Maybe [Benji]'s just not feeling productive today, he doesn’t want to work, and the job coaches in the back see that,” she said. In that case, workers can go into the facility’s community day program, or volunteer in the community in some capacity.
“It’s about choice,” Taylor said.

Will Workers Be Left Behind?

No one really knows what could happen to the workers, though, if Section 14(c) is phased out, and whether workers with disabilities would lose employment opportunities.

Alaska, Maine, Maryland, New Hampshire, and Vermont have fully done away with a subminimum wage for workers with disabilities. California, Colorado, Hawaii, Oregon, and Washington have passed laws that will do the same in the coming years, according to Bloomberg Law research. On Oct. 4, Illinois banned state agencies from entering into new contracts that pay a subminimum wage and mandated they re-negotiate existing contracts to pay at least the minimum wage.

There aren’t, however, extensive studies on what’s happened in those states for workers who were previously employed by 14(c) labor certificate holders.

“There are people who can be moved to competitive employment and there are people who would have great difficulty doing that,” said Peter Blanck, head of the Burton Blatt Institute at Syracuse University. Blanck has studied disability law, as well as the 14(c) program.

“We’re at a novel time where people are looking for ways to reform the 14(c) program, and it’s not as simple as just raising the minimum wage for everyone,” Blanck said. “You might have the same outcome whereby many people with disabilities who don’t need to be there just stay there.”

Hugo Dwyer, the executive director of the advocacy group Voice of Reason, agreed that if 14(c) goes away, workers will be left behind.

“You’ve got two places to go; either competitive employment, and if you can’t do that, then you go back to a day [program],” Dwyer said. “It’s cutting them off gradually, but it’s cutting them off.”

As for Benji, when asked what he would do if his job of assembling kits was no longer available to him, he had a straight-forward answer: “Whatever they want me to do.”
National News:
Promising Autism Treatment Falls Short, Study Finds
By Shaun Heasley, Disability Scoop, Oct. 15, 2021
A naturally occurring hormone that’s been prescribed to many children with autism under the thinking that it could boost sociability does not in fact make any difference, according to a large new government-funded study.

There have long been high hopes that using a nasal spray of oxytocin, a hormone often used to induce labor, could treat socialization difficulties associated with autism. The theory gained traction over the last decade or so with some small studies showing promising results.

But now researchers behind the largest study of its kind on the issue say that while the hormone is safe, it does not provide benefits.

“There was a great deal of hope this drug would be effective,” said Dr. Linmarie Sikich, an associate consulting professor in the Department of Psychiatry & Behavioral Sciences at the Duke University School of Medicine and the study’s principal investigator and lead author.
“All of us on the study team were hugely disappointed, but oxytocin does not appear to change social function of people with autism.”

The research published this week in The New England Journal of Medicine involved 290 children with autism ages 3 to 17 who either received oxytocin or a placebo daily for 24 weeks. The children’s social abilities were assessed before starting the treatment, halfway through and again at the end of the study period.

Overall, the researchers found that oxytocin was well tolerated and there were few side effects, but there were no significant differences between the kids who received the hormone and those who did not.
A Controversial Autism Treatment Is About to Become a Very Big Business
Duke University and a private company have been selling access to unproven cord blood treatments for autism. Now, they’re planning something much bigger.
By Anna Merlan, Vice, October 6, 2021
When desperate parents are looking for medical treatment for their kids, especially their autistic kids, they often do two things: They look up information about a program at Duke University, and then, in short order, they go to GoFundMe. The fundraising site is full of pleas that often mirror one another, in essence saying: My child has one hope, and that hope is in stem cell and cord blood treatments.

This hope, though, is attached to treatments that are hotly disputed at best, unproven at worst, and often very expensive in either case. At Duke University’s Marcus Center for Cellular Cures, parents can enroll their children into a number of clinical trials that aim to study the effects of cells derived from umbilical cord blood on treating the effects of autism and brain injuries; adults can also participate in a trial testing whether cord blood can help them recover from ischemic strokes. And when parents can’t get their children into any of these clinical trials, particularly for autism, they often opt for what’s called the Expanded Access Program (EAP), in which they pay between $10,000 and $15,000 to get their kids a single infusion.

All of the trials use products derived from human umbilical cord blood, which is a source of stem cells as well as other types of cells. The autism trials are using a type of immune cells called monocytes, according to Dr. Joanne Kurtzberg, a well-respected Duke professor who’s conducting clinical trials into whether cord blood can help with autism, and who has been researching stem cells since the early ’90s. (On ClinicalTrials.gov, however, these trials are listed as using mesenchymal stromal cells, which are a completely different type of cord blood cell.)
Now, a for-profit company called Cryo-Cell International with ties to Duke researchers has indicated that it plans to open clinics promoting these treatments, under a licensing agreement with the renowned North Carolina university. (Cryo-Cell acknowledged receiving a list of questions from Motherboard, but did not respond to any follow-up emails or respond to those questions before publication.) In their investor presentation, Cryo-Cell said they plan to become “an autonomous, vertically integrated cellular therapy company that will treat patients.”

Duke and Cryo-Cell’s rush to monetize a procedure before it’s shown to have solid benefits has created concern, though, across the community of scientists, clinicians, and medical ethicists who study autism treatments. 

The hope is that these cord blood infusions can improve some autism symptoms, like socialization and language, or decrease the inflammation that some parents and clinicians think might exacerbate autism symptoms. Early study results, however, haven’t been very promising. A large randomized clinical trial, the results of which were released in May 2020, showed that a single infusion of cord blood was not, in the words of the researchers, “associated with improved socialization skills or reduced autism symptoms.”

This is why Duke’s latest move comes as such a surprise: The university and Cryo-Cell have told investors that they’re planning to open a series of “infusion centers.” At these clinics, Cryo-Cell will use Duke’s technology and methods to offer cord blood treatments for $15,000 per infusion.

In an exuberant presentation for investors, Cryo-Cell said it estimates an annual revenue of $24 million per clinic; it hasn’t disclosed how many clinics it plans to open. At least one will reportedly open in Durham, North Carolina.
State News:
California Vaccine Mandate Extends to Aides for People with Disabilities
By Jackie Fortiér, KPCC - Bakersfield com, October 12, 2021

Workers in adult and senior care facilities and in-home aides have been added to the list of California health workers who must be fully vaccinated against the coronavirus.

Those who work directly with people with disabilities — such as employees paid through the state’s regional center network, aides contracted by agencies, and in-home support service workers who don’t live with the person they assist — are now included in the vaccine mandate. This new group must be fully vaccinated by Nov. 30.

Previous health orders covered only people working in licensed congregate settings like nursing homes, leaving out staff members who support 89% of people in California with developmental disabilities living with family, on their own or in group homes.

For months, that left people like Tim Jin who rely on aides for everyday tasks to wonder: Is the person brushing my teeth vaccinated?

“Due to my disability, I cannot do anything like cooking, eating, using the restroom or even using the microwave on my own. I am totally dependent on others to assist me,” Jin said.

Jin has cerebral palsy and lacks the use of his arms or hands. He communicates mainly by typing with his toes on an iPad mounted next to his feet on his electric wheelchair. Up to six health aides come in and out of his home every day, helping him with intimate tasks like eating and bathing.

“The staff who come into my home should be vaccinated. It’s that simple,” he said. “It’s a matter of life and death.”

Only health workers with religious objections or a qualifying medical condition can be exempted from the vaccine requirement. They will be tested weekly for the virus that causes covid-19 and must wear high-grade masks when working.

In September, Los Angeles County included those aides in its vaccine mandate, following a KPCC/LAist story that reported on the discrepancy.

But the order applied only to L.A. County, leaving out the 200,000 Californians with developmental disabilities living elsewhere, including Tim Jin, who lives in neighboring Orange County.

Advocates for people with disabilities hoped state health officials would use L.A. County as a model, but California’s Sept. 28 health order went further, mandating the vaccine for some in-home support service workers, as well as home health aides.

“These care settings are home to Californians with complex medical conditions, all of whom are at high risk of having severe but preventable outcomes, including hospitalization, severe illness and death,” said Dr. Tomás Aragón, California’s public health officer.

California has reported 19,830 confirmed covid outbreaks throughout the pandemic, and nearly 50% of those were reported in health care, congregate care and direct care settings, according to the California Department of Public Health. Of these outbreaks, the most (22%) have occurred in adult and senior care facilities and in-home direct care settings.
VOR Bill Watch:
[Please click on blue link to view information about the bill]

VOR SUPPORTS:

Including language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services in the Build Back Better reconciliation bill currently being written in Congress.


H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.


VOR OPPOSES:

H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.

H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.
Direct Support Professionals:
VOR ❤️s OUR DIRECT SUPPORT PROFESSIONALS!

Our loved ones' caregivers are essential to their health, safety, and happiness.
In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to join.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at


with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

Contact us at [email protected]
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