June 17, 2022
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's 2022 Annual Meeting

Last Sunday's conference was a huge success!

We would like to thank all of those who participated in the event, and all of those who worked so hard to make it happen.
We would especially like to thank our speakers, Jill Escher, Kit Brewer, and Micki Edelsohn.

Videos of their presentations are available on our

NOTE: There will be no Weekly Newsletter on June 24th or July 1st.
We will return on Friday, July 1st.

Have a Safe and Happy Fourth!

VOR's Jill Barker was a guest this week on
NCSA's Podcast Autism Confidential.

Autism Confidential: Episode 12 - Jill Barker Wants You to Understand Developmental Disability Policy"

International News:
Ukraine War Creates Crisis for Children with Disabilities, I/DD and Severe Autism
Reporting by Richard Engel, NBC News, Featured in an article by Danielle Campoamor on the Today Show, June 13, 2022
NBC's Richard Engel submitted a video story on how children with disabilities have been left behind during Russia's War on the Ukraine. This article shows the heart-wrenching video and offers suggestions as to how to send aid to these vulnerable, abandoned children.

More than 11 million people have fled Ukraine as a result of Russia's invasion. But many of the most vulnerable — mentally and physically disabled children — have been left behind.

The Vilshany Orphanage, located in southwestern Ukraine, is home for over 200 Ukrainian children who have physical and intellectual disabilities. Most orphans in Ukraine have parents, but have been abandoned — some have been at Vilshany for decades without a single visitor.

While it might seem heartless to leave a child behind, families often feel like they have no choice.

"Without any form of support to families to help them keep a child with a disability, it is almost impossible for families to stay together," Eric Rosenthal, founder and executive director of Disability Rights International (DRI), told TODAY Parents. "Mothers or fathers often have to give up a job to stay home with a child. That child is often denied basic health care and is not allowed to go to school. Doctors tell parents that children would be better off and that they are being selfish by keeping the child at home."

Now, more Ukrainian children with disabilities have been left behind as their parents and family members flee Russia's war in Ukraine.

"This damn war set back their development," Bohdan Kykyna, the director of Vilshany Orphanage, told NBC's Richard Engel. Vilshany leadership had to suspend modernization plans to update the facility because of the war, Kykyna added.

National News:
Coronavirus Infection During Pregnancy Linked to Brain Development Problems in Babies
By Sumeet Kulkarni, Los Angeles Times, June 10, 2022
Babies whose mothers were infected with the coronavirus during pregnancy may face a higher risk of brain development disorders such as autism and bipolar disorder, a new study that examined more than 7,500 births suggests.

The finding, published Thursday in the journal JAMA Network Open, adds to the urgency to get coronavirus transmission under control even though newer variants are less likely to cause severe cases of COVID-19.

Other viruses, such as influenza and measles, are thought to make babies more vulnerable to conditions such as autism, schizophrenia and depression if they are exposed in utero. Researchers at Massachusetts General Hospital and Harvard Medical School wondered whether the same might be true about SARS-CoV-2, the coronavirus that causes COVID-19.

“There are more than a decade of studies that suggest viral infection during pregnancy might be associated with neurodevelopmental disorders, so there was reason to be concerned likewise with this virus,” said Dr. Roy Perlis, director of the Center for Quantitative Health at Massachusetts General Hospital and the study’s senior author.
The researchers examined data from electronic health records of deliveries that took place in eight medical centers in Massachusetts in the early months of the pandemic, between March and September 2020. The records tracked the babies’ development for a year after birth, looking for specific codes that would indicate a diagnosis of a developmental disorder related to motor function, speech or language, among other things.

The researchers found that among 7,550 babies whose mothers were infection-free during their pregnancies, 3% were diagnosed with a brain development disorder before their first birthdays. Among the 222 babies who were exposed to SARS-CoV-2 in utero, 6.3% received a diagnosis by the time they turned 1.

After the researchers accounted for other factors that could affect a child’s risk for a neurodevelopmental issue — such as preterm births, the mother’s age and the baby’s gender — they calculated that babies with prenatal exposure to SARS-CoV-2 were 86% more likely to be diagnosed in their first year compared with babies who weren’t exposed before they were born.

House Approves Ban On Electric Shock Devices For Those With Developmental Disabilities
By Michelle Diament, Disability Scoop, June 13, 2022

The U.S. House of Representatives voted 392 to 28 last week to approve the Food and Drug Amendments Act, a broad bill reauthorizing programs at the Food and Drug Administration. Tucked inside the legislation is a provision that would put an end to the use of what are known as electrical stimulation devices, which send shocks through electrodes attached to the skin in order to condition people not to engage in self-injurious or aggressive behaviors.

The devices are believed to be used at only one facility in the U.S. — the Judge Rotenberg Educational Center in Canton, Mass., which serves children and adults with developmental disabilities as well as those with behavioral and emotional problems.

Disability advocates have worked for years to bar the practice. And in 2020, the FDA finalized a ban on the devices after determining that they pose an “unreasonable and substantial risk of illness or injury.” The agency cited evidence of psychological and physical risks including burns, tissue damage, worsening underlying symptoms, depression, anxiety and post-traumatic stress disorder.

But the Rotenberg Center sued and last summer the U.S. Court of Appeals for the D.C. Circuit found that the FDA had overstepped its authority and overturned the regulation.

The legislation now heads to the Senate where advocates say they are hopeful that the provision banning electrical stimulation devices will be included.

“Contingent electric shock for the purposes of behavior modification is inhumane and ineffective and has been condemned by the United Nations as torture,” said Julia Bascom, executive director of the Autistic Self Advocacy Network. “We hope the Senate will act swiftly — folks subjected to these shocks have been waiting for far too long.”

Supporters of the Rotenberg Center, however, are not backing down on what they say is a last resort for individuals with severe behaviors who have not responded to other treatments.

“The parents and guardians of clients of the Judge Rotenberg Educational Center (JRC) will continue to fight to preserve the life-saving electrical stimulation device (ESD) treatment for our loved ones, for whom all other treatment options have been tried and failed,” the Judge Rotenberg Educational Center Parents Association said in a statement to Disability Scoop. “Were the proposed legislation to be enacted, it would destroy the significant gains that have been achieved due to this treatment and inevitably result in self-droppable-1655502818047mutilation and the reemergence of other severe behaviors that will lead to irreparable harm, permanent disfiguration, or even the death of our children.”

CMS official confirms agency considering direct care spending minimums for nursing homes
By Danielle Brown, McKnight's Long-term Care News, June 13, 2022

Federal health officials hinted that nursing home providers may soon be forced to spend a minimum of their Medicaid funding on direct care.

A top official with the Centers for Medicare & Medicaid Services has for the second time hinted publicly that the agency is considering enacting a minimum direct care spending requirement for nursing homes. Such a policy could limit the funding available for operations and capital improvements.

“We want to make sure that the dollars get to the direct care workforce to ensure high-quality care,” Dan Tsai, CMS deputy administrator and Medicaid director, told Kaiser Health Network Friday.

Tsai first announced that it was contemplating standards for direct care spending minimums for nursing homes while speaking in Chicago earlier this year.

Similar legislation has already been passed in New York, where providers must now spend a minimum of 70% of revenue on direct care — with at least 40% of that going to direct care workers. A group of nonprofit nursing homes in late May filed a lawsuit challenging the legislation.

CMS has also previously highlighted Illinois’ new nursing home reform legislation that ties Medicaid increases to higher staffing levels.

James Brett Appointed Chair of the President's Committee for People with Intellectual Disabilities
The Pilot, June 17, 2022

President Biden announced this week that James T. Brett has been appointed to serve as the Chairman of the President's Committee for People with Intellectual Disabilities (PCPID).

The mission of the President's Committee for People with Intellectual Disabilities aims to provide advice and assistance to the President of the U.S. and the Secretary of Health and Human Services on a broad range of topics that impact people with intellectual disabilities as well as the field of intellectual disabilities. The foundation of this mission is a goal to improve the quality of life experienced by people with intellectual disabilities by upholding their full citizenship rights, independence, self-determination, and lifelong participation in their communities.

"I am honored and humbled to have been selected by President Biden to Chair the President's Committee for people with Intellectual Disabilities," Brett said. "Advocacy for people with intellectual disabilities is a cause that is near and dear to my heart, and I look forward to the opportunity to work with other members of the committee to offer guidance and advice to the President on how we can best support people with Intellectual Disabilities."

Brett, a Dorchester resident, has served as the president and CEO of the New England Council, a non-partisan business organization representing businesses throughout the six New England States since 1996. Prior to joining the Council, Brett served for more than 15 years as a member of the Massachusetts House of Representatives. Throughout his career, he has been an outspoken advocate for people with Intellectual Disabilities. He currently serves as the chairman of the Governor's Commission on Intellectual Disability and the chairperson of the Massachusetts Disabled Persons Protection Commission. He is a past president of the board of directors of the Massachusetts Association for Mental Health. He was appointed by Speaker Nancy Pelosi to serve on the National Council on Disability, where he is currently serving as their vice chair.

Over the years, he as numerous awards and honors for his work on behalf of the physically and mentally disabled.

VOR's Annual Meeting & Legislative Initiate help our families to participate in our organizations, to reach out to their Members of Congress, and to become better advocates for their family members with I/DD.

Those who have attended our June meetings in years past will recall what they spent on transportation to and from D.C... what hotel rooms cost, and what other expenses they incurred while in Washington. We ask that you consider giving a share of that expense, maybe part of the cost of airfare or a night at the Hyatt on Capitol Hill,
or even the cost of a quick lunch in the Longworth Cafeteria.

Any and all contributions will be graciously accepted.

Please help us to help you.
Please help us to help families like yours.
State News:
Louisiana's Edwards signs into Law bill to provide Medicaid Coverage of Dental Care for Residents of ICFs

Gov. John Bel Edwards signed nearly four dozen bills into law this week including benefit increases for school retirees, Medicaid coverage of dental care and a slew of locally focused measures.

Edwards also approved House Bill 55, sponsored by Rep. Rhonda Butler, R-Ville Platte, to provide Medicaid coverage of dental care for certain residents of intermediate care facilities.
The bill, now Act 366, extends dental care for Medicaid enrollees aged 21 or older in a state-licensed intermediate care facility for people with developmental disabilities, contingent upon approval from the Centers for Medicare and Medicaid Services and an appropriation from the Legislature.

Vermont - For when they're No Longer Here, Vt. Parents seek better Care for their Children with Developmental Disabilities
By Nina Keck, Vermont Public Radio, June 15, 2022
If you’re a parent, one of your main jobs is to teach your children to take care of themselves so they can eventually leave home.

But what if you have a child with a developmental disability — who will never be able to live on their own?

For many older Vermont parents in this situation, the worry about what will happen to their kids when they die is gut-wrenching. But increased parental activism and a new law is giving many hope.

Forty miles west in Shelburne, Elizabeth Campbell bends down to help her son Jesse put on his sandals so he can go outside with his dog.

Jesse is 24 and was born with Down syndrome. In his teens, his disabilities worsened to the point where he became catatonic. His mother says eventually, he was diagnosed with Down syndrome regression disorder. He's improved since then, but she says it's greatly impaired his ability to function independently.

“So everything has to be, I think of it as shepherding," Campbell said. "I have to shepherd him. 'Alright, Jesse, time for breakfast. OK, Jesse, finish your toast. Time to brush your teeth.'"
She added: "If the house caught on fire, I can't be sure he'd know to leave ... I cannot leave the house without a paid caregiver.”

Campbell is 65. When her husband Bruce was alive, she says they were able to tag team. But Bruce Campbell died of brain cancer a year and a half ago. Campbell says if something were to happen to her, Jesse would most likely end up in the state’s Shared Living program.

She likens it to adult foster care. And she says the thought of her son spending his life as a guest in a series of strangers’ homes is unthinkable.

“None of us would think of, if we still had our elderly parents, none of us would think — if they had a little dementia — of putting them in adult foster care, we wouldn't do it," Campbell said while shaking her head. "Why do we think that's a good idea for people like my son?”

Hawaii - Statewide Survey on Needs for those with Intellectual, Developmental Disabilities
Maui Now, June 16, 2022

The Hawaiʻi State Council on Developmental Disabilities opened a statewide, confidential survey through Aug. 3 to learn the needs of those with intellectual and developmental disabilities, a news release said.
The survey can be completed online by clicking here and will take about 20 minutes to finish. It is confidential and requires no identifying information to participate.

The survey is available now until Aug. 3, and the responses will inform the council and shape how the State of Hawai‘i meets the needs of those with intellectual and developmental disabilities.

“It is our hope that we reach all individuals with intellectual and developmental disabilities in Hawai‘i,” Daintry Bartoldus, Hawaiʻi State Council on Developmental Disabilities executive director, said in the release. “We want to hear from them, their families and their caregivers about their health, educational and work or employment related needs that are so vital to their quality of life and well-being.”

Those invited to the survey are people diagnosed with and not limited to:
  • Autism spectrum disorder
  • CHARGE syndrome
  • Cerebral palsy
  • Epilepsy
  • Fetal alcohol spectrum disorder
  • Fragile X
  • A genetic defect
  • Down syndrome
  • Intellectual disability
  • Prader-Willi syndrome
  • Spina bifida
  • Williams syndrome

The survey should only be filled out once for each individual with an intellectual and/or developmental disability. The survey link may be shared with everyone who is eligible to take it. Family members, support workers, educators, or caregivers, may assist the individual with intellectual and developmental disabilities in filling the survey out.

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.
VOR Bill Watch:
[Please click on blue link to view information about the bill]


Modifying the Build Back Better Act to include language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services, and to remove any provisions that would phase out or eliminate 14(c) wage certificate programs.

H.R. 4779 & S. 1437 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.

H.R.6075 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

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.


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 & S. 3238 - 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.

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.
Help Us Help:
Shop at Amazon?

Use Amazon Smile instead, and 0.5% of your purchase price will go to VOR!

  1. Just go to smile.amazon.com instead of the regular Amazon site, and sign in with your account credentials.
  2. Amazon should then give you a prompt to Select A Charity.
  3. Type into the search box: VOR - Elk Grove Village and click on the Select button.
  4. Now, bookmark the Amazon Smile page and paste it into your Bookmarks Toolbar, so that every time you go to Amazon, you go through the SMILE portal.
Families of individuals with severe/profound intellectual and developmental disabilities and autism need a voice in Washington, D.C.

For 39 Years, VOR Has Been That Voice

Please help us to continue to speak truth to power about the need for a diverse range of services, increased funding, and a full continuum of care to meet the needs of all people with I/DD and Autism.

This year, we engaged in over sixty meetings with Congressional Staff. Together, we have advised on bills to protect Intermediate Care Facilities, to preserve 14(c) opportunities for individuals with I/DD, and to increase pay, training, and benefits for direct support professionals to alleviate the DSP crisis.

We have contacted attorneys from the Department of Justice’ Civil Rights Division concerning increased mortality rates among people with I/DD in wake of the closing of state operated intermediate care facilities in Virginia. We have met by Zoom with the same DOJ attorneys concerning their current action in to move people out of ICFs in Iowa. Just today, we met with leadership of the Administration for Community Living to discuss our mutual concerns and to offer paths forward to help serve all people with I/DD,

In order to have such a presence in D.C., we have had to change with the times. Covid made in-person meetings next to impossible. We have had to adapt to holding virtual meetings on Zoom or WebEx. In order to compete with larger, better-funded organizations, we have had to hire the lobbying firm of Health Policy Source to advise us on how best to approach the powers that be and to facilitate our access to congressional staff. This has cost us, but we feel this has been money well spent. Now, we are asking you to help support us in this effort.

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]
836 South Arlington Heights Road #351
Elk Grove Village, IL 60007

Toll Free: 877-399-4867 Fax: 877-866-8377