December 23, 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's End of Year Fundraising Campaign

Our goal for this year is to make at least $45,000 in donations during the months of November, December, and January.

We are getting there, but there we still have a good way to go.

We have received enough contributions to qualfy for two of the three $5,000 matches. Let's keep going. We cannot afford to fall short this year!

Please help us to reach, and to exceed, our goal for this year.
We rely on the support of families like yours, so that we may support other families, just like yours, with loved ones with intellectual and developmental disabilities?

Please help to us to spread the word about the importance maintaining a full continuum of care, to protect choice, and to advocate for high quality care and human rights for
 those who cannot speak for themselves.

National News:
Vanderbilt Kennedy Center Produces Videos on COVID-19 Vaccine and Individuals with Intellectual Disability
Vanderbilt University News, December 19, 2021

The Vanderbilt Kennedy Center of Excellence in Developmental Disabilities has produced three brief videos to build COVID-19 vaccine confidence in the disability community. These videos feature an adult with an intellectual disability and a parent and her daughter with autism, who share their personal experiences, hesitancy and decision-making related to getting themselves or their child vaccinated.

The videos were produced as part of a funding award from the U.S. Administration for Community Living of the Department of Health and Human Services. They also build upon the work of the Tennessee Developmental Disabilities Network and community partnerships.

Medical Marijuana and Autism: 'I'm Getting My Boy Back,' Mom Says
By Natalie Angley, CNN, December 20, 2021
At first, Joann Fouquette's son, Ezra, was hitting all the milestones. It's what every new mom hopes for: a happy, healthy baby. But around 17 months, things started to change. He stopped speaking. He started covering his ears and hitting his head on the floor like something was bothering him.

Fouquette remembers her mom telling her, "I think we need to get him tested. There's something definitely going on there."

Five months later, in 2012, Ezra was diagnosed with autism spectrum disorder.

"It's devastating," she told CNN Chief Medical Correspondent Dr. Sanjay Gupta. "I've heard people compare it to like losing a child. You lose the idea of the child that you were gonna have, the life that you were gonna have, the life that he's gonna have."

Children and adults with autism tend to have difficulties with verbal and nonverbal communication and social interactions, depending on the severity.

"These are people who have difficulty communicating -- in particular socially. They may speak very well, but they can't carry on a conversation. Then you have the opposite end of the spectrum, where you have children and adults who are entirely nonverbal," said Dr. Doris Trauner, a pediatric neurologist and distinguished professor of neurosciences and pediatrics at the University of California, San Diego.

But autism can also lead to more troubling issues like severe disruptive behavior and self-harm.

"Aggression and self-injurious behaviors are unfortunately very common, especially in children with severe autism," Trauner said. "Anything from repetitively banging their head against a wall to hitting their head with their hands to pinching themselves or biting their hands."

Behavioral therapy, occupational therapy and speech therapy can help, but there are no US Food and Drug Administration-approved treatments for the core symptoms of autism.

Trauner is the lead researcher for the UCSD trial, a double-blind placebo-controlled crossover study, which means the participants don't know when they are receiving the placebo or the medicine, and neither do the doctors. Researchers are examining how CBD could affect the brains of children with autism.

"We know that in autism, there are some differences in brain chemistry. There are some changes in neurotransmitter systems, both in the
dopamine system and in the serotonin system, that may contribute to some of the symptoms," she told Gupta.

Serotonin and dopamine are neurotransmitters that carry signals, or information, from one nerve cell to another. Serotonin is thought to regulate mood and has a big effect on early brain development. Dopamine can reinforce behavior when we receive a reward.

Several studies have shown that dopamine levels that are either too low or too high in children with autism can cause certain areas of the brain to malfunction, resulting in high levels of repetitive behaviors and reduced levels of social interaction, Trauner said.

In animal models studying autism, serotonin levels in the brain may be lower than expected, and adding serotonin improves social functioning in mice, she said.

"And CBD, among many other things, does have effects on the serotonin system with increasing the availability of serotonin," she added. "And that may be helping in terms of social interactions in particular."

Across the country in New York, a similar trial, involving children and adolescents with autism and the cannabinoid cannabidivarin (CBDV), is also underway at Montefiore Health System.

"We know that autism is a developmental disorder that begins early on as the brain is being shaped," said Hollander, the lead researcher on this double-blind placebo-controlled study.

"I think CBDV can play an important role in autism," he said. "It can decrease excitation in neurons and increase inhibition."

When children with autism are too excited or don't have enough inhibition, it can lead to explosive behaviors, temper tantrums, rage or self-injury, and they can display repetitive behaviors, Hollander said.

"So it changes the ratio of excitation to inhibition in different neurons," he said.

While both studies are still ongoing and the blinds have not been broken, early feedback has been positive.

Israel - Medicinal Cannabis Oil Effective for Treating Autism, Study Finds
i24 News, December 21, 2021
Israeli scientists presented in a study the successful treatment of autism in animals using medicinal cannabis oil, suggesting a change in direction of efforts to use cannabis to treat the disorder.

Researchers at Tel Aviv University (TAU) in Israel, led by Ph.D. student Shani Poleg and Prof. Daniel Offen, found that the treatment improves behavioral and biochemical limitations of autism.
The results were published in the peer-reviewed Translational Psychology journal, Hamodia reported, a Hebrew-speaking daily newspaper.

he usual process for testing new medications involves research in Petri dishes… With medicinal cannabis, the process has been reversed: treatments began in humans,” Prof. Offen explained.

In the TAU study, researchers used animal models to test the effectiveness of cannabis oil for alleviating symptoms of the disease.
Researchers found that THC — the principal psychoactive constituent of cannabis responsible for the euphoric sensation associated with it — is effective in treating autism, even in small quantities.

“The strains used for treating autism usually contain very little THC, due to apprehension regarding both the euphoria and possible long-term effects,” Poleg continued, Hamodia reported.
“Our study shows that when treating autism with medicinal cannabis oil, there is no need for high contents of… THC.”

She stressed that the research is preliminary and should not be considered as treatment advice.

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

  1. Just go to instead of the regular 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. Then paste a link to AmazonSmile into your bookmarks, and use that link every time you shop!

Thank you for supporting VOR!
State News:
North Carolina - At this Jacksonville Nonprofit [ICF] Everyone is a Member of the Family
By Elliott Potter, JD News, December 23, 2021
Traditions are a year-round part of life at Carobell, an Onslow County center for the intellectually and developmentally disabled, but the holiday season brings into focus how they are a foundation for those who live and work there.

In a campus of small residences, day support and learning centers, and offices tucked near the back of a neighborhood close to Camp Lejeune’s back gate, Carobell provides around-the-clock care for as many as 38 individuals with severe or profound intellectual and developmental disabilities. These are people who cannot live on their own, but with professional care, guidance and boundless love, they can enjoy lives made brighter by smiles, achievement, good food and Christmas trees.

Carobell is a homegrown nonprofit founded more than 50 years ago by two local women, Virginia Franks and Elizabeth Bell Midgett, whose mission was helping parents of children with various types of severe disabilities. They started on July 1, 1969, by bringing a few children into their own home in Jacksonville’s Sherwood Forest neighborhood.

Their aspirations blossomed into reality as Carobell grew in staff and children, relocating several times before moving to its current complex in the Hubert area. The project started by Franks and Midgett continues under people such as current President and CEO Vanessa Ervin and Programming Director Mary Butts, who have made Carobell their life’s work.

“What we do and the way we do it has changed over the years, and will continue to change,” Butts said during a recent discussion about Carobell’s role in the community. “But our purpose and our mission remain the same, and that is providing quality services to the members, making sure the guardians are involved, and continuing to make sure that the quality of life that you and I would want for ourselves and our family members is provided. That will never change.”
In the spirit of the season, here are [excerpts from] Twelve Traditions of Carobell that carry on the mission of serving a special group of children and adults from Eastern North Carolina and across the state:

2) Carobell’s residents are not “clients” or “patients” -- they are called members, as in “members of the family.” Mary Butts explained: “‘Members’ stuck for us. You take away that stigma of being a patient or a client. It means, ‘I’m a member of not just the family, but a part of the community.’ Our members want to be seen as normal. Everyone has a disability; theirs is just more visible.”

5) Carobell has the look and smell of a home, not an “institution.” The residences smell like homes and associated activities such as cooking, laundry, and occasional bathroom functions. “It is their home,” Ervin said. “The smells shouldn’t be any different.”

6) Members of the Carobell family are individuals with their own traditions. “Every one of the people who live here, they are as different as you and me,” Walker said. They develop their own routines that often involve family and, in one case, application of new technologies.

9) This is a place where “food is love.” As with most families, celebration of holidays, tradition and life in general at Carobell often revolves around food. The menu often is prepared by non-culinary staff. “Food is love,” Walker said. “And I love to cook. Weirdly enough, the men who work here do more of the cooking than the women.”

Nevada - $21 million in American Rescue Plan Act Funds Approved to Support COVID-19 Treatments - And An ICF/IID
By Jeff Munson, Carson NOW!, Dec. 22, 2021
The Interim Finance Committee of the Nevada Legislature on Tuesday approved more than $21 million of American Rescue Plan Act funding to support COVID-19 treatments as well as an intermediate care facility for youth in Clark County.

The Nevada Department of Health and Human Services’ Division of Public and Behavioral Health was allocated $19.6 million to support the increase in access to monoclonal antibody treatment and other COVID-19 treatments throughout Nevada. Through this funding, Nevadans will have easy access to oral antiviral medication and freestanding treatment centers.

Additionally, the Division of Child and Family Services (DCFS) was approved for more than $1.9 million of American Rescue Plan Act funds to support Clark County and an intermediate care facility for youth.

“The impact of the COVID-19 pandemic on mental health and behavioral issues for children and youth has been widespread and there is an increasing number of children suffering from mental health conditions,” said Dr. Megan Freeman, State Children’s Behavioral Health Authority.
“The greater the needs of the child, the more difficult it can be to find an appropriate placement and we know these funds will be put to good use to support children in Clark County needing a higher level of care.”

This funding will be used to support six beds at the Oasis Psychiatric Residential Treatment Homes. The facility will provide a safe and appropriate treatment environment for those with intellectual and/or developmental delays, including autism, who have intensive behavioral needs and cannot be safely cared for in the community.

“This is a major step to address the service deficit in behavioral health services for the children and families in Clark County,” said Clark County Commissioner Justin Jones, who advocated for the funding. “Thank you to Governor Sisolak, the Nevada Legislature, and our federal delegation for approving and directing this much-needed funding to Clark County.”

Oklahoma - A Milestone for Oklahoma's Developmental Disabilities Services
By Lexy French, K-TEN News, December 21, 2021

On Monday, for the first time in more than a decade, the Oklahoma Department of Human Services reached a major milestone for its Developmental Disabilities Services waiting list.

The number of people receiving DDS benefits exceeded the number of those on the waiting list.

Beth Scrutchins, the state's director of Developmental Disabilities Services, said it is a pivotal moment for individuals with intellectual disabilities across Oklahoma.  “This fiscal year alone, we have been able to move 600 individuals off of the waiting list and into our intake process,” she said. “Some people have been waiting on the waiting list for 13 years, and so we are trending in the right direction and hope to continue moving forward.”

The department also implemented a new program this year to help families and individuals access disability resources while on the waiting list.

Pennsylvania - Low Pay is Causing a Staffing Crisis for Disability Care. Advocates Say PA’s Plan to Raise Wages Isn’t Enough.
By Colin Deppen and Juliette Rihl, Gant News, December 21, 2021
Before the pandemic, Lisa Stagon and her son Chris had their care routine figured out. Chris, who is 26 and has Down syndrome, worked part-time at an Eat’n Park in Westmoreland County, received monthly job training, and spent 46 hours a week with a direct support professional while his mother was at work.

But their structure began to crumble during the pandemic when Chris was laid off and Stagon, fearing Chris could contract COVID-19 through a caregiver, suspended his services. Suddenly Chris was home all day, without any support.

“I was working 50 hours a week and trying to care for him at the same time,” Stagon, 62, said. “It was a lot.”

The breaking point came when Stagon was called back to the office last year after working remotely. She tried to find someone to help Chris with everyday tasks like shaving, cooking, and taking his medications. But agencies across the region were turning families away. There simply wasn’t anyone to do the job.

In July 2020, she made a difficult decision.
“I left the workforce in the pandemic to be a full-time caretaker for him,” she said. “Because it was just — it was too hard.”

Pennsylvania is facing a dire shortage of direct support professionals who help people with intellectual and developmental disabilities bathe, get dressed, eat, exercise, socialize, and perform many other fundamental tasks. Putting an exact
number on the shortfall is difficult, as employment data on these workers is lumped together with health-care aides generally, but the industry was already experiencing double-digit vacancy and turnover rates nationally before COVID-19 arrived.
The shortage has left thousands of people without essential services and their families without desperately needed help.

Many providers and families blame the staffing crisis on skimpy government funding. The state’s reimbursement rates for support services, they said, are too low to pay a living wage to professional caregivers, making hiring and retaining workers nearly impossible.

In some cases, families waited years to receive funding from the state for those services only to find there is no one to provide them.

As of September, there were over 12,000 people with an intellectual disability in need of financial help on a state waitlist for funding, according to Brandon Cwalina, a spokesperson for Pennsylvania’s Department of Human Services,

The wait for those who sign up is an average of over two years, and patient advocates say there are likely many more families who need services but aren’t on the waitlist.

New York - Elected officials Respond to Staffing Crisis Causing Group Homes to Close Across the State
By Madison Moore, Local Syracuse, December 21, 2021

When Christie Haney’s daughter was abruptly relocated from her group home in Syracuse two months ago because of a severe staffing crisis, she described the experience as completely overwhelming. 

Haney quickly realized her 29-year-old daughter with developmental disabilities wasn’t the only one being impacted. Group homes run by the State’s Office for People with Developmental Disabilities were temporarily closing everywhere due to staffing shortages. 

According to OPWDD, 57 group homes have closed across the state, including 11 in Central New York.  
Haney was able to find an online community filled with people in similar situations who banned together to create the New York Alliance for Developmental Disabilities, an organization working to advocate for and protect the rights of people with developmental disabilities. 

The popular Facebook group has even grabbed the attention of notable politicians, including State Senator John Mannion.

“We have met several times and they’ve been very supportive. I’ve been supportive of them. They are a strong advocate to elevate the voices of families or individuals with disabilities for sure,” Senator Mannion said.

Senator Mannion isn’t stopping there though. As the Chairman of the Committee on Disabilities, he’s asking for the first cost of living increase in over a decade for OPWDD, a 5.4% jump to be exact. In addition, he’s asking for $500 million in next year’s budget to be used as a year after year additional investment to support the needs of OPWDD.

The federal government also dished out money to help aid the agency with workforce incentives through an additional $500 million. 

Senator Mannion is hoping these steps will help to support increased wages for Direct Support Professionals and help to reopen temporarily closed facilities, but he recognizes the solution won’t happen overnight.

Governor Hochul also signed four pieces of legislation into law Tuesday to support the rights of those with disabilities including a bill that will conduct a study looking at how OPWDD has responded throughout the pandemic.

-------------------- Related Story --------------------
New York - Hochul Signs Disabilities Legislation, State to Study its Response to Pandemic
By Joshua Solomon, Times-Union, December 21, 2021

Gov. Kathy Hochul signed a package of bills on Tuesday intended to help people with disabilities and their families, including a study of the state's response to the COVID-19 pandemic.

The Developmental Disability Advisory Council is set to study and report back on the state's response to the COVID-19 pandemic for people with intellectual or development disabilities that receive assistance from the Office for People with Developmental Disabilities or the Department of Health. OPWDD is also going to report on its response to the pandemic. 

"The review can provide guidance on how best to protect our most vulnerable from infectious diseases," said Assemblyman Thomas J. Abinanti, chair of the Committee on People with Disabilities. 

Hochul signed into law a bill known as "Fred's Law," which allows people with disabilities — including anyone with a condition or disorder that makes it difficult for them to communicate their everyday needs, like autism or cerebral palsy — to select a person that can be with them during their stay in a hospital. 

The legislation, sponsored by state Sen. Joseph Addabbo Jr., followed the death of Fred D'Amico, who died in the hospital in 2020. Addabbo, D-Queens, said the family "fought hard to make sure that no other family goes through the pain they felt when they lost Fred because no one was allowed to be with him when he entered the hospital in 2020."

Hochul also signed into law a series of bills by state Sen. John W. Mannion, D-Geddes, including the study of the state's response to the pandemic. Mannion, chair of the Committee on Disabilities, also sponsored bills signed by Hochul to study the employment of persons and veterans with disabilities and to expand appointments on a related advisory council.

Idaho Ends Partnership with Company that Misused Taxpayer Money meant for People with Developmental Disabilities
By Margaret Carmel, BoiseDev, December 22, 2021

The state ended its partnership with a company providing services for more than 100 Idahoans with developmental disabilities after seven years of what the state calls fraudulent claims, incomplete paperwork and other improper billing for reimbursement from taxpayer funding.

In mid-September, the Idaho Department of Health and Welfare terminated the Medicaid Provider Agreement for Meridian-based Inclusions, Inc. following years of audits and letters informing the company of wrongdoing going back to 2014. This means the 138 people using Medicaid waivers to pay for supportive services from Inclusions like in-home care, supervised employment programs, mental health counseling and specialized nursing had to go elsewhere for their services.

DHW spokesperson Niki Forbing-Orr told BoiseDev that all of the impacted customers were able to be placed with new service providers.

Washington Boy with Autism is Stuck in the Hospital for the Holidays. He’s Not the Only One
By Austin Jenkins, Oregon Public Broadcasting, December 19, 2021
In late September, a non-verbal 13-year-old boy with autism was brought to Providence Regional Medical Center in Everett.

His name was Matthew.

He wasn’t sick. He hadn’t been injured. There was no medical emergency.

Instead, he’d been taken to the hospital after back-to-back incidents in the same day at the group home where he lived. First, he flooded a bathroom. Later, he attacked several staff members who called police to the home.

Nearly three months later, Matthew is still at the hospital in Everett. He spends his days watching SpongeBob Square Pants on TV or viewing music videos on his iPad. Four times a week someone from the school district comes to give him an hour of instruction.

When Matthew gets frustrated, he often acts out. At times, hospital staff have had to physically restrain and even sedate him, according to an
advocate who’s working with the family. Hospital officials said restraints are used as a last resort.

His mother says she can’t manage her son’s challenging behaviors at home. And no alternative placement has been found.

Matthew represents an extreme case of what advocates and state officials say is a growing problem in Washington: youth with developmental disabilities getting stuck in the hospital.

The cases often follow a similar script. The child spirals into crisis and is taken to the hospital. But once they’re stabilized and it’s time for them to be discharged, the state can’t find an appropriate placement for them back in the community. And so, they languish in the hospital — for days, weeks and even months.

Year-End Giving for VOR

For those members who have been blessed to reach their seventies, and who will be required to take a distribution from their IRA's by December 31, 2021, please consider using this opportunity to make a contribution to VOR.

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.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.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:

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?

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