April 2, 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

Today, April 2, 2021 is Autism Awareness Day
April is Autism Awareness Month
VOR's 2021 Legislative Initiative
Registration Is Open!
VOR's Legislative Initiative Is Online This Year

Legislative Briefing - Sunday, May 16 - 4:00 pm, Eastern
Virtual Hill Visits - May 17 - 20
Online Debriefing Sessions - May 17 & 18 6:30 - 8:00 pm Eastern

Due to the pandemic, there will be no in-person meetings with Members and Congress or their staff on the Hill. We are encouraging our members to coordinate with others in their state to arrange meetings via Zoom, WebEx, Skype, FaceTime, or conference calls. We will provide the contact lists and let you know who in your state is participating. It will be up to you to coordinate with them and arrange your virtual meetings.

Part One: The Legislative Briefing
Sunday, May 16: 4-6 pm Eastern, 3-5 pm Central, 2-3 pm Mountain, 1-3 pm Pacific

The Sunday Briefing will explain in depth the issues that we wish to bring before our legislators this year. It will be followed by a Q&A, giving participants the opportunity to better understand our key points.

Part Two: Virtual Hill Visits
Monday - Thursday, May 17 - 20 - Virtual Meetings with Congressional Offices
We will try to make our presence known by concentrating our virtual meetings into a shortened time frame, much like during our in-person initiatives in the past when VOR members were meeting in offices in all six of the Legislative Office Buildings. If at all possible, please try to schedule meetings in the days that follow the Sunday Briefing.

Online Debriefing Sessions
Monday, May 17 & Tuesday, May 18  6:30 - 8:00 pm Eastern
There will be two online de-briefing sessions after each of the first two days’ meetings, to provide Q&A to help answer any questions that may have arisen and to help members follow up with anything that arises during their Hill visits.
You must be a current member of VOR to participate in this event, as the meetings with legislators and their aids will be conducted under the auspices of VOR.
VOR's Virtual Annual Meeting

Sunday, June 6, 2021 on Zoom

Details to be Announced Soon
VOR & YOU: Vaccines and Variants
VOR urges you to stay safe and protect your loved ones with I/DD
this Holiday Weekend and always!
The Race between COVID Vaccines and Emerging Variants

By Eileen Drage O'Reilly and Will Chase, Axios, April 1, 2021

America is in a race to vaccinate people before the country is overwhelmed by variants that are spurring a fourth wave of COVID-19.

Why it matters: Spring is here, and when cases were dropping, hope was rising for a more normal summer. But experts warn this will only happen if people keep social distancing, wearing masks and getting vaccinated as soon as they can.

State of play: Growing evidence shows the three authorized vaccines currently offer protection against the variants, Larry Luchsinger, assistant member of the nonprofit New York Blood Center, tells Axios
  • But Luchsinger and several other experts warn vaccinations must speed up in the U.S. and globally before a more serious variant pops up that renders the first generation of vaccines ineffective.
  • Experts aren't the only ones worried: A recent Harris poll finds a majority of Americans from all political parties are either "somewhat" or "very" concerned about the variants.

The [CDC] is watching five "variants of concern" that can alter public health measures by having characteristics such as increased transmissibility, more severe disease or a higher death rate, and the ability to interfere with treatments or vaccine effectiveness.

Those five variants, and the places they were originally detected, are: B.1.1.7 (U.K.), P.1 (Japan/Brazil), B.1.351 (South Africa), B.1.427 (California), and B.1.429 (California).

"The B.1.1.7 is a superspreader, in a way. It has a higher chance of spreading — about 50% to 70% more likely," says Ali Mokdad, professor of health metrics sciences at the IHME at the University of Washington. "Basically, we're in a race against time, where we need to make sure everybody who's eligible to a vaccine has access and gets it in order to ensure that cases will keep falling all the way until the end of the summer."

Relative Invisibility Makes for Uphill Battle to get COVID Vaccines for Americans with IDD
By William Brangham, PBS Newshour, March 31, 2021

People with intellectual and developmental disabilities like Down Syndrome, Cerebral Palsy and Autism often have underlying health conditions that make them more susceptible to COVID-19. Plus, many receive care in group living facilities, putting them at further risk. But despite the elevated risks for those with IDD, they face an uphill vaccination battle.

National News: Biden's American Jobs Plan
[NOTE: President Biden announced a $1.9 Trillion Jobs and Infrastructure Plan this week. Among the many components of the bill are proposals to expand HCBS services and Money Follows the Person. No mention has been made of supporting ICFs or other non-HCBS residential options]
What’s in Biden’s $2 Trillion Jobs and Infrastructure Plan?
By Rachel Siegel, Washington Post, March 1, 2021
President Biden unveiled a $2 trillion jobs and infrastructure plan Wednesday to address some of the country’s most pressing problems, including damaged bridges, unequal broadband access, climate change and care for people with disabilities and the elderly.

Care economy: $400 billion

  • The plan expands access to home- or community-based care for seniors and people with disabilities. It would extend a Medicaid program, Money Follows the Person, to move elderly residents out of nursing homes and back into their own homes or into the care of loved ones.

  • Biden also calls for improving working conditions, including higher wages and more benefits, for caretakers, who are disproportionately women of color and who have largely stayed on the job during the coronavirus pandemic.

Biden Proposes The Biggest Medicaid Home-Based Long-Term Care Expansion In History, But….
By Howard Gleckman, Forbes, April 1, 2021

In his American Jobs Plan, President Biden has proposed increasing federal support for home-based long-term care by a staggering $400 billion over eight years. A $50 billion annual increase would represent a roughly 40 percent increase in the $129 billion Medicaid spent on long-term care in 2018 and a 70 percent increase in that year’s home and community-based services (HCBS) budget.

And it would come on top of a one-year $12 billion hike in the federal contribution to Medicaid HCBS that Congress passed as part of the American Rescue Plan in early March. Combined, the two initiatives are by far the biggest expansion of Medicaid HCBS the US ever has seen.

Yet, for all its ambition, Biden’s plan won’t fully address the nation’s long-term care problems. It focuses on only one piece the puzzle—Medicaid HCBS. And it still won’t provide sufficient services for many older adults and younger people with disabilities who rely on Medicaid for their care. It doesn’t boost funding for a long list of non-Medicaid federal programs that are critical to those living at home. And it does nothing at all for middle-income Americans who are unable to pay for long-term care insurance but are not poor enough to qualify for Medicaid.

State News:
State of Nebraska and Consultant Examining Future of State-Run Developmental Disability Facilities
Report about Beatrice State Developmental Center, regional centers could be issued this fall
By Doug Kennedy, River Country NewsChannel, March 26, 2021
With client population dwindling, some local officials are concerned about what is the State of Nebraska’s plan for the Beatrice State Developmental Center, over the long-term.

The State of Nebraska has hired a consultant that deals with government-run health care services to help formulate an action plan regarding BSDC, and regional centers in Lincoln and Norfolk. Nebraska State lawmaker Myron Dorn said the state took public comment recently during online stakeholder meetings, where parents of clients and community leaders gave input.

Once serving a large population of persons with developmental disabilities, the client number at BSDC has been declining.

"Part of what's happened over the years is the population has decreased...and I did not know this, but at one time it had a population of maybe over
two thousand. But, I do know very vividly when
there was six to seven hundred there. The population has slowly declined over time to where two years ago, it was at about one hundred nine....and now we are under hundred, at about ninety."

"They haven't had any new residents for a period of time now. Some of the questions they got from the participants in the stakeholder meetings was when was the last time there was a new admittance."

In 2016, Nebraska’s Department of Health and Human Services was ordered by the legislature to prepare a comprehensive plan for BSDC and the Bridges Program in Hastings…..examining their roles, preferences of residents and their families, facility structural needs, census trends and integration of residents into the community. The plan was to look at long-term viability of the Beatrice and Hastings facilities.

Alabama - House OKs Bill to End Organ Transplant Discrimination Against People with Disabilities
By Brandon Mosely, Alabama Political Reporter, March 31, 2021

Under current state standards, a child who was intellectually challenged or otherwise impaired would not be allowed on the waiting list to receive an organ transplant. Organs are reserved for otherwise healthy people. On Tuesday, the Alabama House of Representatives voted 93 to 0 in favor of a bill that would change this discriminatory practice.

House Bill 263 is sponsored by state Rep. Debbie Wood, R-Valley. Wood explained in committee that she learned of this situation from one of her constituents, whose disabled daughter needed an organ but could not even get on the organ waiting list because of her Down Syndrome. Wood said the mother’s story was heartbreaking.

According to the synopsis: “This bill would prohibit discrimination against an individual from receiving an organ transplant based on the individual having a disability. This bill would also require health care practitioners, hospitals and other health care facilities, and organ transplant centers to provide reasonable accommodations to an individual with a disability in medical need of an anatomical gift or organ transplant.”

This legislation passed the Alabama House last year but failed to be considered by the Alabama Senate due to the COVID-19 economic shutdown. When the Legislature finally returned to finish the 2020 Legislative Session, the focus was on passing out the budgets and local legislation in the shortened regular session.

Alabama - Senate Considering Bill to Set Minimum Standards for Visitation
By Brandon Mosely, Alabama Political Reporter, March 29, 2021

During the COVID-19 crisis, many nursing homes and hospitals banned visitation of patients even by spouses and children. The fear of spreading the disease meant that thousands of Alabamians spent their final weeks and in some cases months completely alone outside of the doctors and staff at the facilities where they spent their final time on this earth. A bill in the Alabama Senate would change that and set minimum standards of visitation for patients in long-term care facilities.

Senate Bill 307 is sponsored by Sen. Garlan Gudger, R-Cullman.

SB307 addresses the heartbreak of separation between patients and their families during this pandemic. This Bill would afford access by family members to their loved ones.

SB307 would set minimum standards for visitation when visitation may be limited due to a public health emergency, subject to reasonable restrictions. This bill would also provide civil immunity for health care facilities acting in accordance with its provisions.

Pennsylvania - Essential Caregiver Bill Passes House
By John Whittaker, Times-Observer, April 2, 2021

Rep. Kathy Rapp’s essential caregiver bill is one-third of the way to becoming law.

House Bill 649 passed unanimously in the House of Representatives and has been referred to the state Senate. Rapp attempted to get the legislation passed late in 2020 to open nursing homes to essential caregivers when facilities were still locked down due to COVID-19. The Warren Republican said the legislation is still necessary despite Centers for Disease Control guidance that allows families back into congregate care buildings.

Rapp proposes to create an essential caregiver position in long-term care facilities through a regulation that mirrors those passed in Minnesota and Indiana. The legislation has been amended three times.

“I don’t know if other states have passed it, but this bill is modeled from those other states and we do know now that the CDC has said the facilities can be open,” Rapp said during a March 17 House Health Committee meeting where the bill was approved. “However this bill will address if we have another lockdown that families will be able to be with their loved one — with necessary precautions and CDC guidelines — and I believe this is timely even though the CDC has said we’re going to move forward and all families can visit. I do not believe in good conscience that we should allow this situation to happen again.”

New York - Probe of Group Home Abuse Overstepped, NY High Court Finds
By Nick Rummell, Courthouse News Service, March 29, 2021
Rampant abuse by state employees in group homes led to the creation of unelected special prosecutors, but they were granted too much power, New York’s Court of Appeals ruled.

Special prosecutors set up to prosecute the sexual abuse of people with special needs unconstitutionally usurped the jurisdiction of local district attorneys, New York’s high court ruled on Tuesday.

As opposed to district attorneys who are duly elected, the underlying statute authorized the state governor to appoint the special prosecutors.

“We recognize that this well-intentioned legislation was aimed at protecting a particularly vulnerable class of victims,” Judge John Garcia wrote for the unanimous Court of Appeals. “But we cannot rewrite a statute in order to save it.”

Garcia said there is no statutory precedent to support the Justice Center for the Protection of People with Special Needs and its special prosecutors, established in 2013 to curb rampant abuse in group homes.
“All told, there is simply no analogy — in precedent or in statute — to Executive Law § 552’s creation of a state-wide prosecutor, appointed by the Governor, with concurrent prosecutorial authority over a set of enumerated crimes,” the 18-page ruling states.

Further, Garcia added, the statute failed to specifically state that local district attorneys had the “ultimate responsibility for the prosecution” in those abuse cases.

Careful not to throw out the baby with the bathwater, Garcia said “excising the offending provisions” of the statute — granting the special prosecutor discretionary authority to bring criminal cases — could leave the rest of the statute intact and allow the prosecutor to cooperate with and assist district attorneys.

New York - Sale of Kingston Group Home May Displace Dozens of Adults With Disabilities
By Ben Nandy, Spectrum News, March 29, 2021
Government leaders in Kingston and Ulster County fear the housing crisis could be compounded as a large property is for sale at Main Street and Washington Avenue.

More than 60 residents of the adult group home, Chiz’s Heart Street, have been told they need to prepare to move out, setting off a mad scramble by residents’ families and local officials to find them new homes.

Sharon Chisholm, better known as "Chiz," has managed the home since 2004. After learning the property owner — Stockade Group LLC — plans to sell the property, Chisholm has been trying to find housing for the tenants before the building sells.

“I want to do it in a graceful manner,” she said. “I want everybody to be happy as they’re leaving. Some people have been here for 17 years. It’s really sad.”
“It’s all up in the air right now,” said Michael Mahr-Hale, former manager of a different, nearby group home and the son of a tenant living at Chiz’s.

Mahr-Hale recently circulated flyers through the group home to inform tenants that because of a state eviction moratorium and tenant protection laws, they do not have to leave immediately. Mahr-Hale said he is trying to buy time. He hopes local government or a non-profit can step in and save the group home.

“Housing insecurity is incredibly traumatic,” he said Monday during an interview in front of Chiz’s. “You’re traumatizing 68 people. It’s absurd. The county needs to step up.”

Wisconsin - KANDU, Other Sheltered Workshops Get Reprieve
By Frank Schultz, GazetteXtra, March 29, 2021\
A proposal that could have wiped out jobs for people with disabilities at KANDU Industries in Janesville is off the table—for the moment.

The proposal was part of the American Rescue Plan Act, the $1.9 trillion COVID-19-related economic stimulus bill President Joe Biden signed into law earlier this month.

The bill would have outlawed the sub-minimum wages allowed for people who work at KANDU and sheltered workshops like it, but the provision, along with the proposed increase in the federal minimum wage, was dropped from the final version.

About 200 KANDU clients are cognitively disabled, some of them so severely that working in a regular workplace would be impossible, said KANDU Executive Director Kathy Hansen.

Rep. Bryan Steil, R-Wis., agreed on his visit to KANDU in February.

The low wages are allowed under section 14(c) of the Fair Labor Standards Act.

In an email Monday, Steil said that after his visit, he worked in Congress to draw attention to the
negative impacts of eliminating the section and to highlight the importance of the jobs for thousands of workers with disabilities around the state.

“Our work is far from over, as these job-killing proposals are likely to resurface,” Steil said. “I will continue bringing awareness to this issue and working to provide all Wisconsinites with the opportunity to work, contribute, and find fulfillment in their lives.”

Hansen said KANDU workers are assigned job coaches to guide them through complexities of work that most people take for granted. She cited an example of one worker who didn’t realize he shouldn’t leave his wallet on the break room table.
“If 14(c) would go away, we wouldn’t be able to provide people with the severe disabilities with that support,” Hansen said.

Coronavirus Updates:
Covid-19 Tracker:
More Than 628 Million People Have Gotten Vaccines Worldwide;
The U.S. has Administered 158 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.
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.


At this writing, there have been no bills entered in the 117th Congress that support a full continuum of care, protect employment options that rely on 14(c) wage certificates,
or advance the interests of Direct Support Professionals.
Please stay tuned.
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'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

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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