October 16, 2020
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 Fall Membership & Fundraising Campaign!

The days are growing shorter; the leaves changing color; the temperature dropping,
It's time we start gathering our acorns and storing them for the months ahead.
Every Member Get A Member
Every Member GIVE A Member!
What we're asking is pretty simple.

Let's work together to build our strength, all the better to meet the challenges that lie before us.

Let's start by bringing in new members.
If every member brings in a new member, we could double our size in three short months.
Marilyn Straw, one of VOR's cherished past presidents, spoke with me last week and said, "We've tried this "Every Member Get A Member" campaign for the last few decades, and that we never double our membership." And she's right.

This year, she suggested we try "Every Member GIVE A Member!"

Marilyn knows that it's better to give than to receive, and what better way to give than to give a piece of what's important to you to a friend or family member? Let them know a little more about you, about what matters to you. Let them know a little more about the world of our families with loved ones with IDD.

A one-year membership is only $45. It's a great way to give to someone in your family and also give to our VOR Family.
So give a little. To someone you love, for someone you love.
Spotlight: Why Murray Center?
Why Murray Center?
The Murray Parents Association has been releasing a series of five videos featuring families explaining why Murray Center and Intermediate Care Facilities can offer care and benefits not available in other settings. ***** Highly Recommended!
This incredibly moving video shows the difference that just one year at the Murray Center has made in the lives of Lori Feldt and her son Max.

In the first video, Peggy strong describes Marjorie's journey, and how Murray Center has changed her life and given her freedom that she had never had in group home settings.

In the second video, the Duecker family speaks about how important the Murray Center has been in supporting their son with severe autism and helping him to control his behaviors.
In the third video, Rita Hicks shares about how Murray Center has given a new life and new possibilities to her friend Renee Sharp.

Book Review - A Mother Takes Readers on a Journey With Her Autistic Son
By Judith Newman, NY Times, October 15, 2020
Life With Severe Autism
By Amy S.F. Lutz

“I see only hands,” Amy S. F. Lutz writes. “One wrapped over Jonah’s fist, another under his jaw to keep him from biting, another untangling my hair from his fingers, one intercepting before he could yank another necklace off my neck. … I never had enough hands.”

The author is trying to safely defuse her severely autistic son, in the midst of one of the rages that once consumed him. Jonah, now 21, is not “quirky.” Nor is he an “indigo” child possessed of extraordinary and mysterious abilities. He is an affectionate young man who loves his parents, his four younger siblings, pretzels with cheese sauce and the kind of roller coaster rides that make the rest of us hurl. He also needs to be watched every minute of every day. Left to his own devices he will run away, or perhaps flush his iPad down the toilet when it needs to be recharged. He has few words. Though he can write and “decode” text, he doesn’t really comprehend. He required almost a year of hospitalization for his violent outbursts, and maintenance electroconvulsive therapy to quell his rapidly cycling bipolar disorder. When he was younger he might have tried to attack you, or himself. His family loves him deeply.

State News:
OHIO - Reopening Former Youngstown Developmental Center was a Team Effort
By Justin Dennis, Mahoning Matters, October 13, 2020
It’s been three-and-a-half years since the state shuttered the Youngstown Developmental Center, forcing local families to seek essential services for the disabled and mentally ill that were sometimes hours away.

Mahoning County officials earlier this month announced the 35-acre campus’ return as the Mahoning Valley Campus of Care, one of the only sites in the state that could offer comprehensive, wraparound services. It’s set to reopen by the end of the year.

The several area nonprofits set to be the campus’ new tenants are now renovating or preparing their own spaces. The county will assist with the heavy lifting, but “it’s really not major,” said Commissioner Carol Rimedio-Righetti.

“It’s just a tale of cooperation among those organizations,” said Duane Piccirilli, executive director of the Mahoning County Mental Health and Recovery Board, which has overseen coordination for the new campus.
He expects one building could be dedicated to serving clients with autism; another for the “medically fragile” — those who have lived independently but still need assistance and aren’t ready to move into a nursing home.

The return of local services means families won’t have to travel to facilities as far as Warrensville or even Columbus for services.

“People were driving an hour to see their loved ones,” said Rimedio-Righetti. “Some of the family members who were older had to give their [YDC] residents to the state like a guardianship because they couldn’t get to them.

“Everybody just felt the same thing about this project. It’s a good thing for the Valley. You gotta help those who can’t help themselves.”

Oklahoma - Intermediate Care Facility Being Built in West Siloam Springs
By Marc Hayot, Northwest Arkansas Democrat-Gazette, October 9, 2020
A new care facility is being built on the site of the old Valley Springs Residential Care and Pleasant Springs Memory Care and Assisted Living property on Stateline Road.EastOk Cottages will be an intermediate care facility for individuals with intellectual disabilities, according to Kimberly Green, Diakonos Group chief operating officer.

Unlike a traditional nursing home, EastOk will cater to individuals 18 and older who have intellectual disabilities only, Green said.

“We’re extremely excited to be in the area and we cannot wait to meet the people and staff who will be our family,” Green said.

The main building will house the first two cottages which will be separated by a firewall. The first cottage is complete and ready for use. It will have five double occupancy rooms and six single occupancy rooms.

The facility wants to move three to four people in the first cottage so the state can come in and inspect the facility and see how care is given, Green said. If EastOk passes the inspection, it will be cleared by the state to open, Green said.

EastOk will consist of four cottages that will house 16 each in a family style environment. EastOk will start out with 15-20 employees and as time goes on they will go up to about 50 or 60, Green said.

National News:
IRS Issues Final Rules For ABLE Accounts
By Michelle Diament, Disability Scoop, October 12, 2020

Federal officials are firming up rules for a relatively new type of account that allows people with disabilities to save money without jeopardizing their government benefits.

The Internal Revenue Service issued final regulations this month spelling out details about how ABLE accounts should operate.

The accounts, which were established by the 2014 ABLE Act, allow individuals with disabilities to accrue up to $100,000 without risking eligibility for Social Security and other government benefits. Medicaid can be retained no matter how much money is saved in the accounts.

SSI, Social Security Benefits Will Increase In 2021
By Shaun Heasley, Disability Scoop, October 14, 2020

People with disabilities receiving Supplemental Security Income and other Social Security benefits will soon see their payments rise.

The Social Security Administration said this week that benefits will increase 1.3 percent in 2021. The change comes as a result of an annual automatic cost-of-living adjustment, known as COLA, that’s tied to inflation. By law, Social Security benefits go up when there is an increase in the Consumer Price Index from the U.S. Department of Labor’s Bureau of Labor Statistics.

The higher payments will begin Dec. 31, 2020 for more than 8 million SSI beneficiaries and in January 2021 for over 64 million people across the nation receiving Social Security.

Trump Administration Drives Telehealth Services in Medicaid and Medicare 
Press Release from CMS, October 16, 2020

Today, the Centers for Medicare & Medicaid Services (CMS) expanded the list of telehealth services that Medicare Fee-For-Service will pay for during the coronavirus disease 2019 (COVID-19) Public Health Emergency (PHE). CMS is also providing additional support to state Medicaid and Children’s Health Insurance Program (CHIP) agencies in their efforts to expand access to telehealth.
For the first time using a new expedited process, CMS is adding 11 new services to the Medicare telehealth services list since the publication of the May 1, 2020, COVID-19 Interim Final Rule with comment period (IFC). Medicare will begin paying eligible practitioners who furnish these newly added telehealth services effective immediately, and for the duration of the PHE. These new telehealth services include certain neurostimulator analysis and programming services, and cardiac and pulmonary rehabilitation services. The list of these newly added services is available at:

Heart, Lung, Diabetic Conditions More Common In Adults On The Spectrum
By Michelle Diament, Disability Scoop, October 16, 2020
Adults with autism are up to four times more likely than others to have chronic physical health conditions, new research suggests, and lifestyle factors don’t appear to be the reason why.

On average, adults on the spectrum have low blood pressure, arrhythmias, asthma, prediabetes and other conditions at rates that are 1.5 to 4.3 times higher. The increased occurrence does not appear to be tied to typical risk factors like smoking, alcohol use or a person’s body mass index, according to findings published recently in the journal Autism.

The study looked at 1,156 adults with autism and 1,212 without the developmental disorder who took part in an anonymous, online survey.

“This is a first step in better understanding why autistic individuals are so much more likely to have chronic physical health problems,” said Elizabeth Weir, a graduate student at the University of Cambridge who led the study.
Weir noted that other biological, environmental, lifestyle or health care factors could be behind the increased risk seen in those with autism.

Even within the population of people with autism, researchers noted that experiences varied. Women with autism, for example were four times more likely to have prediabetes compared to females who are not on the spectrum. But men with and without autism were equally likely to have the condition.

Accordingly, the researchers said that it’s likely unreasonable to apply a one-size-fits-all approach to health care for those with autism.

Source of Rare Intellectual Disability Syndrome Discovered
By the Ann and Robert H. Lurie Children's Hospital of Chicago, Newswise, October 13, 2020,oriteborder

New findings from scientists at Stanley Manne Children’s Research Institute at Ann & Robert H. Lurie Children’s Hospital of Chicago have revealed previously unknown information about the genetic basis for Armfield XLID syndrome, a rare intellectual disability linked to genetic defects in the X chromosome.

Published in Nature Communications, these findings point to defects in mRNA splicing as a major cause for Armfield XLID. This, along with other recent studies, shows a rising class of diseases called spliceosomopathies that interfere with neurodevelopment, according to co-senior author of the study Erica Davis, PhD, member of the Advanced Center for Translational and Genetic Medicine at the Manne Research Institute at Lurie Children’s and associate professor of Pediatrics and Cell and Developmental Biology at Northwestern University Feinberg School of Medicine.

“We had hints from early proteomics reports dating back over 10 years ago that FAM50A might be part of the spliceosome,” said Dr. Davis. “This finding was tucked away in a supplementary table of the journal and never validated, so we were thrilled when our data were consistent with preliminary data reported back in 2008.”

Intellectual disability (ID) affects 1 to 3 percent of people, but is 20 to 30 percent more common in males due to a concentration of genes on the X chromosome that are required for neurodevelopment.

Males only have one X chromosome, so genetic mutations in that one chromosome have a higher likelihood of causing disease compared to females who have two X chromosomes and therefore a “backup” copy. Previous studies have discovered at least 140 genes that cause X-linked intellectual disability (XLID), but more than 80 XLID conditions remain without a genetic diagnosis, according to the authors.

Developmental Disorder Study Identifies 28 Novel Disease Genes
Staff Reporter, GenomeWeb, October 14, 2020

Researchers at the Wellcome Sanger Institute, Radboud University Medical Center in the Netherlands, Opko Health's GeneDx, and their collaborators have identified 285 genes that are significantly associated with developmental disorders, 28 of which have not previously been robustly associated with these conditions.

In a paper published on Wednesday in Nature, the researchers described their efforts to identify previously undescribed genes associated with developmental disorders by integrating healthcare and exome sequencing data from 31,058 parent-offspring trios of individuals with developmental disorders and developing a simulation-based statistical test to identify gene-specific enrichment of de novo mutations. Through this, they identified the 285-gene dataset.

However, they also noted that although they were able to detect genes associated with developmental disorders that had not been identified up to this point, many of the excess de novo mutations in protein-coding genes remain unaccounted for. Modeling suggests that more than 1,000 genes associated with developmental disorders have not yet been described, many of which are likely to be less penetrant than the currently known genes, the researchers said.

"This study has really shown the benefits of access to healthcare data, not least to the approximately 500 families living with a developmental disorder who had not been able to get a diagnosis until now," co-lead author and Wellcome Sanger Institute researcher Matthew Hurles said in a statement. "But our findings also estimate that we require ten times as much data to be able to identify all the genes linked to developmental disorders. As such, greater access to anonymized patient data is crucial to our understanding of these conditions and our ability to help the families living with them."

VOR Bill Watch:
Click on blue link to view information about the bill


H.R. 6045 & S. 3669 - 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. 5443 & S. 3220 - Ensuring Access to Direct Support Professionals Act -
To amend title XIX of the Social Security Act to clarify that the provision of home and community-based services is not prohibited in an acute care hospital, and for other purposes.

H.R. 2417 - 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. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care". In addition to the inherent bias against ICF's and people with severe and profound I/DD, the bill is prohibitively costly and there are not enough Direct Support Professionals to meet the provisions of this act.

H.R. 582 & S. 150 - The Raise the Wage Act - This bill is aimed at raising the minimum wage, but it also has provisions to eliminate 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. 873 & S. 260 - The Transformation To Competitive Employment Act - This bill has declared the goal of eliminating Sheltered Workshops and 14(c) Wage Certificates, under the mantle of everyone with a disability is capable of competitive integrated employment.
Sponsors of the bill recently added a new summary that significantly downplays the effect the bill would have on eliminating work centers and 14(c) that benefit those who are unable to compete in the employment opportunities the bill promotes.


VOR is concerned about the following bills because they only cover HCBS proivders, and because the sponsors of the bills have consistently fought against ICFs as part of the continuum of care in I/DD services.

H,R. 6305 & S. 3544 - Coronavirus Relief for Seniors and People with Disabilities Act of 2020 - Bill provides FY2020 supplemental appropriations to the Centers for Medicare & Medicaid Services for specified quality improvement and laboratory certification activities. The funds are designated as an emergency requirement, which exempts the funds from discretionary spending limits and other budget enforcement rules.
In addition, the bill (1) temporarily requires state Medicaid programs to provide Medicare cost-sharing assistance to certain individuals who qualify for, or are enrolled in, the low-income subsidy program under the Medicare prescription drug benefit; and (2) authorizes a grant program to support Medicaid home- and community-based services during the public health emergency.


During the COVID-19 Pandemic, Health Care Providers have been relying increasingly on Telehealth Services. Members of Congress have proposed a number of bills to learn more about telehealth services, with a possible eye toward expanding these services into our broader system of health care.

VOR has been following the expansion of telehealth, especially how incorporating these services into treatment of people with I/DD might change our delivery systems. Telehealth has the potential to improve care for some people with poor access to professional care, or it could be used as a less-expensive substitute for in-person treatment and quality professional care.

Current Telehealth bills in the 116th Congress include:

H.R. 6474 - Healthcare Broadband Expansion During COVID-19 Act - To provide for the expansion of the Rural Health Care Program of the Federal Communications Commission in response to COVID–19, and for other purposes.

H.R. 7078 - To study the effects of changes to telehealth under the Medicare and Medicaid programs during the COVID-19 emergency.

S. 3999 - A bill to amend title XVIII of the Social Security Act to simplify payments for telehealth services furnished by Federally qualified health centers or rural health clinics under the Medicare program, and for other purposes.

S. 3999 - A bill to amend title XVIII of the Social Security Act to ensure access to mental health and behavioral health services furnished through telehealth under the Medicare program.

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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