January 22, 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

President Biden announced a large number of appointments on the first night of his presidency. Of interest to VOR families was his appointment of Alison Barkoff to the position of Acting Administrator and Assistant Secretary for Aging at the Administration for Community Living.

Ms. Barkoff is a committed advocate for community living and inclusion. She has long been an opponent of many of VOR's key principles, and spoke against our families in hearings initiated by Rep. Bob Goodlatte in the House Judiciary Committee on March 6, 2018. Mrs. Barkoff supported class action lawsuits to close ICFs.

ACL Announces Appointments of Key Leadership Positions

Alison Barkoff - Acting Administrator and Assistant Secretary for Aging

Alison Barkoff was sworn into office as the Principal Deputy Administrator on January 20, 2021, and currently is serving as Acting Administrator and Assistant Secretary for Aging. In this capacity, she provides executive direction, leadership, guidance and coordination for ACL programs nationwide and advises the HHS Secretary on issues affecting individuals with disabilities and older adults.

Ms. Barkoff comes to ACL from the Center for Public Representation, where she served as Director of Advocacy. In that position, she led policy advocacy with federal agencies and Congress and legal advocacy nationally to advance community living and inclusion, including in the areas of healthcare, Medicaid home- and community-based services, employment, housing, and education. She led and participated in numerous coalitions with disability and aging organizations, including as co-chair of the Long-Term Services and Supports Task Force of the Consortium for Citizens with Disabilities. She has testified before Congress and the U.S. Commission on Civil Rights on disability rights and was appointed to serve on the federal Advisory Committee for Competitive Integrated Employment of People with Disabilities.

It is our hope that Mrs. Barkoff will support our families' right to choose for themselves which facilities are best for their loved ones with I/DD, and work with our families to preserve a full continuum of care.
National News:
Opinion: How the Biden Administration Can Put Autism Policy on the Right Track in 2021
By Jill Escher, National Council on Severe Autism, January 20, 2021
As the Biden administration takes the reins in Washington this week, the catastrophe of Covid-19 is understandably at the forefront of policymaking. But Covid is unfortunately not the only game in town — our newly installed leaders should also keep in mind another epic public health emergency, the nationwide deluge of disabling autism spectrum disorder.

To judge by data from our most populous state, California, we have witnessed a 40-fold increase in cases of permanently disabling, developmental-disability-level autism between the mid-1980s and today. In the case of the Golden State, this scorching increase means a climb from 3,000 cases 35 years ago to about 133,000 cases today. In another shocking statistic, the Centers for Disease Control estimates that 5% of all boys in New Jersey now have autism, and overall trends suggest that increases have not plateaued and that soon fully 3% of all U.S. children will be afflicted. While school districts report ever-
increasing caseloads, growing cohorts of disabled autistic young adults age out into a fragmented, outdated adult system unequipped to meet the complex needs. Financial models indicate a massive annual private and public economic burden to the tune of a trillion dollars. States, desperate to keep a lid on the high costs associated with autism, are often quick to de-fund critical programs, while offering no roadmap for the future. Meanwhile families grow increasingly panicked.

Never before has it been so urgent to have a federal administration rooted in reality, data, and science. Only upon a fact-based foundation can America address the complicated challenges wrought by this increasingly prevalent brain-based disorder. With that in mind, here are five fundamental areas in which the new administration can move autism policy in a positive direction.

We urge our readers to click the above link and read Jill Escher's full editorial before reading the following article.
Biden Plan Would End Subminimum Wage, Offer Stimulus Checks To More With Disabilities
By Michelle Diament, Disability Scoop, January 18, 2021
In his first major undertaking, President-elect Joe Biden wants to do away with a decades-old option to pay workers with disabilities less than minimum wage while giving stimulus payments to more people in this population.

Biden unveiled a $1.9 trillion proposal late last week to address the ongoing COVID-19 pandemic and the economic fallout from it. The so-called American Rescue Plan includes $1,400 in direct payments to many Americans as well as funding to support vaccine distribution, reopen schools and support state and local governments while also extending unemployment benefits and expanding paid leave.

Notably, the plan would provide stimulus payments for adults with disabilities who are considered dependents for tax purposes. These individuals have been disqualified from the previous rounds of direct payments issued by the federal government since the start of the pandemic.

The proposal also calls for eliminating subminimum wage for people with disabilities.
Under a law dating back to 1938, employers are able to receive special 14(c) certificates from the U.S. Department of Labor allowing them to pay individuals with disabilities less than the federal minimum wage of $7.25 per hour.

[M]any disability advocates have been pushing for years to end the practice, which they say is outdated and exploitative. Some states and cities have already banned employers from paying subminimum wage and, as a candidate, Biden pledged to support a phaseout of the program.

Now, Biden is looking to make good on that promise as he prepares to take office on Wednesday. His proposal calls for increasing the federal minimum wage to $15 per hour and eliminating subminimum wage for people with disabilities. Information released so far does not include details about exactly how Biden would like to see this occur or on what timeline.

Note: VOR vehemently opposes the elimination of the subminimmum wage in well-regulated vocational centers that offer this unique opportunity to people with intellectual and developmental disabilities. Most families of people with I/DD who work in these centers support these opportunities and oppose all efforts to eliminate these rewarding programs.
CDC Study Pinpoints Prevalence Of Intellectual Disability
By Michelle Diament, Disability Scoop, January 21, 2021

Researchers from the Centers for Disease Control and Prevention are offering up a new estimate of the number of American children with intellectual disability.

In a study looking at 8-year-olds in several communities across the nation, CDC researchers found that 1.2% had IQ scores of 70 or below qualifying them for an intellectual disability diagnosis.

The findings published late last year in the Disability Health Journal are based on data collected through the CDC’s Autism and Developmental Disabilities Monitoring Network, which regularly reviews health and educational records for 8-year-olds in selected communities. The CDC uses the same methods to determine its autism prevalence estimates, which are generally updated every two years.

For the study, researchers looked at records for over 215,000 children in nine states in 2014, identifying children as having intellectual disability if they had an IQ score of 70 or less or if there was a written statement from a qualified professional indicating that the child’s intellectual functioning fell within that range.

The vast majority of children identified — 78% — had mild intellectual disability while 12% were classified in the moderate category and 1% were considered severe or profound. Researchers did not have precise IQ scores for the remaining children and could not specify severity.

Intellectual disability was about twice as likely in boys compared to girls and in Black children compared to white kids. Prevalence also varied dramatically by location with Arkansas at the high end seeing double the cases of Minnesota and Tennessee, which reported the lowest rates.

Of the children with intellectual disability, the study found that 39% also had autism.

Disability Discrimination In Health Care Under Scrutiny
By Shaun Heasley, Disability Scoop, January 19, 2021

Federal officials are weighing a rewrite of regulations designed to ensure that people with disabilities do not face discrimination from medical providers amid persistent concerns about unequal access.

The U.S. Department of Health and Human Services’ Office for Civil Rights is issuing a request for information on disability discrimination in the health care and child welfare systems.

The move comes as the agency said that it “is aware that significant discrimination on the basis of disability against persons with disabilities persists in the nation’s health care system and in its child welfare system.” In addition to reports of discrimination that have surfaced during the course of HHS OCR’s own activities, officials said that they’ve heard about issues from researchers, advocates and disability organizations.

Now, the agency is looking for feedback on what any updates should address. Specifically, officials said they would like information about disability discrimination in the context of organ transplants, life-saving or life-sustaining care, suicide prevention and treatment, crisis standards of care, health care value assessment methodologies, child welfare and the availability of auxiliary aids and accessible medical equipment.

HHS OCR said it wants input from people with disabilities, their families, providers, disability advocates, hospitals, child welfare agencies and other stakeholders. In addition to information on discrimination, the agency indicated that it would like to hear about the costs and administrative burdens related to various approaches to tackling the issue.

Coronavirus Update: Variants
These Coronavirus Variants Are Keeping Scientists Awake at Night
By Maggie Fox, CNN, Jan. 19, 2021
At least four new variants of the coronavirus are keeping scientists awake at night.

One, first identified in southeast England, has now shown up in at least 50 countries and appears to be spreading more efficiently than older variations of the virus. Its appearance has frightened political leaders, who have closed borders and imposed travel restrictions in attempts to curb its spread.
Others, identified in South Africa and Brazil, haven't traveled as far and wide but show a constellation of mutations that have grabbed the attention of geneticists.

And then there is a new variation that's shown up in California that may or may not be driving renewed spread there.
So far, none has done what scientists most fear and mutated to the point that it causes more severe disease, or evades the protection provided by vaccination. While some of the new variants appear to have changes that look like they could affect immune response, it's only by a matter of degree.

What We Know and Don't Know About the Coronavirus Variants
By Andrew Joseph,STAT c/o KQED - PBS, January 19, 2021

The coronavirus variants are, in a word, confusing.

By now, you have likely heard about different variants that first raised trouble in the United Kingdom, South Africa, Brazil, and now maybe California — though the jury is very much out on whether that last one is cause for concern. To make a messy alphabet soup even more jumbled, these variants have unwieldy names, and they each contain mutations with unwieldy names of their own. The result is that people are left trying to differentiate among B.1.1.7 and N501Y and E484K and C-3PO.

Wait, sorry, that last one is from “Star Wars.”

The point is that all of this is difficult to keep track of, and it will only grow more confusing with more variants likely to turn up. “It’s becoming a mutation-of-the-week game,” said Stephen Goldstein, a coronavirologist at the University of Utah.

Below, STAT explains what’s known about the variants, why they’re getting so much attention, and what they mean for the trajectory of the pandemic.

Why Are Variants Popping Up Now?

Well, they are and they aren’t.

SARS-CoV-2, the virus that causes COVID-19, has been mutating all along; that’s just what viruses do. Many of those mutations don’t change the virus substantively, and some might actually be detrimental to the virus, making that variant likely to die out.

But every so often, a mutation or combination of mutations will give rise to a new form of the virus with an evolutionary edge, like being able to infect cells better or spread faster. This new variant can outpace earlier iterations of the virus and become dominant.

Early on in the pandemic, a mutation known as D614G seems to have given the virus a boost in its infectiousness, and variants with the mutation became the most prevalent around the world.

Beyond the fact that the virus is constantly changing, there are other reasons why these “fitter” variants have started to emerge. In the early days of the pandemic, when just about all of us were vulnerable to COVID-19, any infectious variant had a pretty easy time circulating. But as more people in certain areas have become protected — either after an initial infection or vaccination — pressure on the virus has increased. A so-so spreader might no longer be able to find new hosts (that’s us) to infect, but variants with mutations that help them spread can still transmit, and can take off from there.

What You Can Do to Avoid the New Coronavirus Variant Right Now
By Tara Parker-Pope, NY Times, January 19, 2021
New variants of the coronavirus continue to emerge. But one in particular has caused concern in the United States because it’s so contagious and spreading fast. To avoid it, you’ll need to double down on the same pandemic precautions that have kept you safe so far.

The variant known as B.1.1.7., which was first identified in Britain, doesn’t appear to cause more severe disease, but it has the potential to infect an estimated 50 percent more people. The Centers for Disease Control and Prevention has predicted that this variant could become the dominant source of infection in the United States by March. Variants with the same mutation have been reported in Brazil and South Africa, and now scientists are studying whether a variant with a different mutation, and first found in Denmark, along with one identified in California, have caused a surge of cases in California.

The new variant spreading in the United States appears to latch onto our cells more efficiently. The change suggests it could take less virus and less time in the same room with an infected person for someone to become ill. People infected with the variant may also shed larger quantities of virus, which increases the risk to people around them.

“The exact mechanism in which it’s more transmissible isn’t entirely known,” said Nathan D. Grubaugh, assistant professor and epidemiologist at the Yale School of Public Health. “It might just be that when you’re infected, you’re exhaling more infectious virus.”

So how do you avoid a more contagious version of the coronavirus? I spoke with some of the leading virus and infectious disease experts about what makes the new variant so worrisome and what we can do about it. Here’s what they had to say.

How can I protect myself from the new coronavirus variant?

The variant spreads the same way the coronavirus has always spread. You’re most likely to contract the virus if you spend time in an enclosed space breathing the air of an infected person. The same things that have protected you from the original strain should help protect you from the variant, although you may need to be more rigorous. Wear a two- or three-layer mask. Don’t spend time indoors with people not from your household. Avoid crowds, and keep your distance. Wash your hands often, and avoid touching your face.

“The first thing I say to people is that it’s not a different virus. All the things we have learned about this virus still apply,” said Dr. Ashish K. Jha, dean of the Brown University School of Public Health. “It’s not like this variant is somehow magically spreading through other means. Anything risky under the normal strain just becomes riskier with the variant.”

And let’s face it, after months of pandemic living, many of us have become lax about our Covid safety precautions. Maybe you’ve let down your guard, and you’re spending time indoors and unmasked with trusted friends. Or perhaps you’ve been dining in restaurants or making more trips to the grocery store each week than you did at the start of lockdowns. The arrival of the variant means you should try to cut back on potential exposures where you can and double down on basic precautions for the next few months until you and the people around you get vaccinated.

Direct Support Professionals:
Pandemic Helpline For Caregivers of People With IDD

As the COVID-19 pandemic wears on, a new 24-hour support line is working to help individuals with developmental disabilities and those who care for them cope during this tough time.

Known as Project Connect, the telehealth line is free and available anytime for people with disabilities, their families, caregivers and other members of their support teams across the nation.

Project Connect is available by calling 888-847-3209.
VOR Bill Watch:
All of the bills that were not passed in the 116th Congress have expired.

The 117th Congress has not yet introduced any bills that directly affect people with I/DD. We are watching daily to see if any of the bills that we supported or opposed are introduced in the new congress.

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?
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