March 26, 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 2021 Virtual Annual Meeting
Online Legislative Initiative
VOR's Legislative Initiative Is Online This Year

Legislative Briefing - Sunday, May 16 - 4:00 pm, Eastern
Virtual Hill Visits - May 17 - 20

Registration Begins Next Week!
VOR's Virtual Annual Meeting

Sunday, June 6, 2021 on Zoom

Details to be Announced Soon
National Council on Severe Autism
Policy Summit 2021
The National Council on Severe Autism Policy Summit took place yesterday, March 25, 2021.

There were several great segments and presentations. We highly recommend you talke the time to watch the video and view the slides.

One thread that ran through the conference concerned the importance of maintaining distinction between those with severe autism (Profound Autism) and those who are less severely impacted, many of whom portray autism as a gift.

Dr. Zahorodny’s presentation illustrates the growth of the “autism tsunami” that has been rising in the past decades and that will most likely grow n in the years ahead.
We also recommend watching Melissa Harris’ presentation. It is a pretty clear picture of what CMS is thinking and doing these days. CMS doesn’t really determine policy so much as interpret it, then pass it on to the state agaencies, who themselves re-interpret it and put it into practice. Seeing CMS’ outlook may give you a window into understanding how policies are being developed in your state.

VOR would like to extend our special thanks to NCSA's Jill Escher, Amy Lutz, and the entire NCSA Board for inviting us to participate in this event.

March is Developmental Disabilities Awareness Month
Home and Community Based Services Access Act of 2021

Representative Debbie Dingell (D-MI), Senator Bob Casey (D-PA), Senator Maggie Hassan (D-NH) and Senator Sherrod Brown (D-OH) have drafted a new bill, the Home- and Community-Based Services Access Act of 2021. The bill was written with input from the Arc and possibly other like-minded organizations, and contains provisions to increase federal support of HCBS settings eliminate waiting lists for services, and alter the landscape of services for people with I/DD. The Bill has not yet been introduced. The sponsors have opened a forum for comments from stakeholders until April 26, 2021.

VOR is at work on a response to this bill and we will keep our members posted as to our comments and how you, as stakeholders, may get involved when the time comes.

Nice Story of the Week:
COVID-19: These Biodegradable Face Masks Bloom Into Flowers When Planted
By Zaini Majeed, RepublicWorld, March 23, 2021
Dutch company designs COVID-19 face masks at sheltered workshops from edible rice and fills them with mix of Dutch meadow flower seeds to make it eco-friendly.

A woman in Utrecht, Netherlands has designed 100 percent biodegradable face masks that sprout into beautiful flowers after they are planted or discarded on the ground. The masks are designed out of ‘rice paper’ and are a perfect alternative to the surgical masks that are stockpiling in litters alongside streets, and in waste disposal landfills adding to the global microplastic pollution levels. Marie Bee Bloom, a company based out of the Netherlands is run by Marianne de Groot-Pons, a graphic designer, who is behind the breakthrough and innovative idea.
According to Marie’s business website, the firm designs the face masks at Dutch sheltered workshops and manufactures the masks fiber out of edible rice. Each mask is filled with a mix of Dutch meadow flower seeds. Once discarded carelessly, or consciously buried in the land, and watered, the flower case inside the masks sprouts and blooms, cultivating the land and proving beneficial for the bees. Marie Bee Bloom face masks are 100 percent biodegradable, eco-friendly made entirely out of organic material that can convert a barren backyard corner into a colourful garden.

VOR's Campaign For Change

This year, VOR's Annual Meeting will be held virtually, via Zoom. The date and details are yet to be announced. But to support our work, we are have a fundraising event we call the Campaign For Change.

It's easy. At the end of each day, empty your pockets of all your loose change and put it into a jar. You can dig into your couch cushions, too. On May 1st, gather up all of that change and take it to the bank or a CoinStar machine and cash it in, deposit it into your bank account, and send a check to VOR for the amount of change you've gathered. You are welcome to get family and friends, children and grandchildren involved.

At our virtual Annual Meeting, five winners will be announced. So start saving those pennies, nickels, dimes and quarters today, and we look forward to seeing you all in June!

"Be a part of the change you want to see in the world." - Mahatma Gandhi
State News:
Pennsylvania - Fighting to Save the White Haven Center
By Andy Mehalshick, PA HomePage, March 19, 2021
Families who have loved ones at the White Haven Center say they are not giving up the fight to keep its doors open.

Tom Kashatus’ adult daughter is a resident of the White Haven Center. It’s the only home she knows and he says she gets great care, but he would have to move her to a community-run center if the state moves ahead with plans to shutter the White Haven Center.

“And I can’t look at it any other way than being optimistic that this is going to end up in a satisfactory… satisfying the community and all,” said Kashatus.

The state announced plans in 2019 to close White Haven Center and another similar facility in Polk County, arguing that their residents will be better served in a community residential setting. 400 employees of the center would also be out of work.
Word of the plan caused an uproar from families of the residents.

The state has been gradually phasing out facilities like White Haven, citing better services as well as cost savings to the commonwealth. State lawmakers, including State Rep. Tarah Toohil (R), 116th District, oppose the closing.

“We still are keeping hope alive. They did an excellent job during the pandemic keeping the residents safe. Preventing spread as compared to other areas around the state who had issues,” said Rep. Toohil.

Texas - HHSC Updates Visitation Rules for Long-Term Care Facilities
By KLTV Digital Media Staff, KLTV-7 News, March 23, 2021

The Texas Health and Human Services Commission is expanding visitation statewide in nursing facilities and other long-term care settings, effective today. Per federal guidance issued March 10 by the Centers for Medicare and Medicaid Services, fully vaccinated nursing facility residents are now allowed close, in-person visits with family members and friends who are not designated essential caregivers, as long as proper safeguards are in place.

”Safely visiting with family and friends is vital to the mental health and well-being of long-term care residents,” said Victoria Ford, HHS chief policy and regulatory officer. “We are so pleased these new rules will allow residents to enjoy in-person visits with a wider circle of loved ones.”

For nursing facilities, these updated visitation rules give providers additional flexibilities in accordance with the new federal guidelines. While continuing to follow all protocols to mitigate the spread of COVID-19, including the wearing of face masks, Texas nursing facilities can now permit:

  • close/personal contact during any visitation for fully vaccinated residents.
  • outdoor visitation at all facilities, even when the facility has an outbreak.
  • up to two essential caregivers at the same time to visit a resident with any COVID-19 status.
  • all visitation without time limits, while adhering to infection prevention and control measures.
  • end-of-life visits for all residents regardless of their COVID-19 status in all nursing facilities, with an expanded definition of end-of-life visits that now includes all residents receiving hospice services; residents at or near the end of life, with or without hospice services; and residents whose prognosis does not indicate recovery.

In addition to nursing facilities, HHSC expanded visitation allowed in assisted living facilities, intermediate care facilities, and Home and Community-based Services providers.

Massachusetts - DDS Numbers Show Pre-COVID Drop in Mainstream Employment of DDS Clients
By Dave Kassel, COFAR Blog, March 25, 2021
Despite continuing clams by the state that people with developmental disabilities are finding jobs and thriving in the mainstream workforce, newly provided state data show a steep drop in “supported” or “integrated employment” for those persons as of early 2020.

A comparison of the new data from the Department of Developmental Services (DDS) with data previously available from the Department reveals a 53% drop-off in “group and individual supported employment” between October 2019 and February 2020. (See graph)
As the graph shows, the employment numbers actually rebounded a little bit as of November 2020, which was during the COVID period, but then dropped again as of February 2021.
The drop in the number of DDS clients in “individual and group supported employment” positions is prior to the COVID crisis, so COVID-19 and its impact could not be the cause.

The DDS data raise further questions about the state’s claims in closing all sheltered workshops as of 2016 that DDS clients would find better and more fulfilling work opportunities in the mainstream workforce.

New Jersey - Families Of Adults With Developmental Disabilities Desperate To Save North Jersey Agency
By Lisa Rozner, CBS-2 News, March 20, 2021
There is a heartbreaking plea from parents of children with developmental disabilities to save the North Jersey Elks Developmental Disabilities Agency in Clifton, New Jersey.The adult center, where their sons and daughters learned to flourish for decades, is in danger of closing, CBS2’s Lisa Rozner reported Friday.

Melissa Christiana loves shopping, a skill she picked up from the staff.

“Even though she’s 44, she just keeps learning,” said Melissa’s mother, Betty Brarman.
“She’s become, over the years, quite social and quite verbal,” said speech therapist Susan Ranucci.

But it’s been Zoom only for Melissa since November. Centers like this closed down, buses stayed parked, and half the staff were laid off.
The nonprofit serves about 50 adults from 21 to 70 years old. It relies heavily on Medicaid and state funding.

“The state has been giving us approximately 50% of what we would normally take in to maintain some staff in order to do online trainings,” said Dr. William Weiss, executive director of the North Jersey Elks Developmental Disabilities Agency.
“We are devastated and we didn’t know what to do,” said Brarman, who helped start an online fundraiser to fill the gaps so the center can survive.

Coronavirus Updates:
Covid-19 Tracker:
More Than 518 Million People Have Gotten Vaccines Worldwide;
The U.S. has Administered 137 Million Doses

A Quick Guide to Statewide Vaccination Plans

Littler Publications is offering a free guide to vaccine plans for each state.

This chart is not all-inclusive and does not cover municipalities, some of which have issued their own guidance. Nor does the chart include vaccine provider registration procedures or industry-specific guidance. The purpose of the below information is to give employers a general idea of what vaccine-related actions various jurisdictions are taking.

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


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.


At this writing, there have been no bills entered in the 117th Congress that support a full continuum of care, or advance the interests of Direct Support Professionals.
Stay tuned.
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.

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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