March 12, 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
SAVE THE DATES!
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

Details & Registration to be Announced Soon
VOR's Virtual Annual Meeting

Sunday, June 6, 2021 on Zoom

Details to be Announced Soon
VOR & YOU:
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.
March is Developmental Disabilities Awareness Month
Important Medicaid Provisions Supporting Choice

Our friends at Together For Choice have assembled a document pointing out several key provisions of the Social Security Act that support CHOICE, particularly the choice of an Intermediate Care Facility.

For the last few weeks, VOR has advocated for changes in the American Rescue Plan to include all people with I/DD and their caregivers in the ithe Medicaid FMAP funding increase, not limiting this pandemic relief only to those receiving HCBS services. We were not successful. The Senate increased the FMAP to 10%, but failed to provide this relief to those living and working in the ICF environment, even though they suffered at least as much loss during the crisis.

Below is a look at just what the Congress has bestowed other individuals with IDD, but not for our more severely disabled loved ones who live in ICFs.

Potential Impact of Additional Federal Funds for Medicaid HCBS for Seniors and People with Disabilities
Priya Chidambaram and MaryBeth Musumeci, Kaiser Family Foundation, March 15, 2021
National News:
COVID-19 Cases Plummet Among Those With IDD Who Are Offered Vaccines
By Shaun Heasley, Disability Scoop, March 17, 2021
New data suggests that COVID-19 infections among people with intellectual and developmental disabilities and the staff who serve them drop dramatically once they are eligible for vaccines.

In Tennessee — the first state to make COVID-19 vaccines broadly available to residents with developmental disabilities — there was a decline of over 80% in infections among these individuals and their support staff between December 2020 and February 2021.

The figure comes from the Tennessee Department of Intellectual and Developmental Disabilities and accounts for people served through the state’s three Medicaid-funded programs for those with developmental disabilities as well as staff working for community-based services providers.
The state moved people with developmental disabilities into phase 1a1 of its vaccine distribution plan in December, allowing this population and their support staff to be in the very first group to get the shots.

By the end of February, state officials said that COVID-19 cases among people with developmental disabilities declined over 84% while cases among staff dropped nearly 83%.
Feds Propose Changes To Disability Employment Rules
By Michelle Diament, Disability Scoop, March 15, 2021
The Biden administration is reconsidering what should qualify as competitive integrated employment for people with disabilities.

The U.S. Department of Education said it plans to update a 2017 frequently asked questions document that serves as guidance for the vocational rehabilitation program and the agency is soliciting public comment on its proposal.

Under federal law, people with disabilities participating in vocational rehabilitation must be given the opportunity to obtain competitive integrated employment. The guidance in question addresses what counts.

Per the new proposal, individuals with disabilities would have to earn at least minimum wage and work in the community in a setting where they interact with people without disabilities to the same extent that typically-developing employees do in order for work to qualify as competitive integrated employment. What’s more, employees with disabilities must have similar opportunities for advancement as employees without disabilities who have comparable positions.
However, the proposed guidance is clear that individuals with disabilities are not required to participate in competitive integrated employment and can choose to work in other settings.

“We encourage state VR agencies to continue to work with employers and other community partners to create employment opportunities that meet all criteria in the definition of ‘competitive integrated employment,’ including the criterion for an integrated employment location,” the document states. “Nevertheless, we recognize some VR program participants, represented by family members or others as appropriate, may choose to pursue work that does not meet the definition of ‘competitive integrated employment,’ such as those work opportunities that pay subminimum wage or are not integrated in a manner consistent with the definition.”
Perspectives:
Why We Need to Start Using the Term “Profound Autism”
By Alison Singer, President, Autism Science Foundation, March 17, 2021

I am infuriated by the story of the four-year old boy with autism who was kicked off a Spirit Airlines flight for not wearing a mask, despite having a letter from his doctor indicating he was exempt from mask-wearing due to disability.

The airline told the family autism “is not a disability.” Where on earth would someone get the idea that autism is not a disability? Perhaps from neurodiversity community members who insist that autism is just an “alternative way of being” or a “difference” or “superpower” rather than a disability. For some high functioning individuals that’s true and for others, like this boy, it’s not. This is exactly why we need new terms for autism to separate profound autism from what used to be called Asperger Syndrome.

It’s hard to blame Spirit Airlines. After all, the autistic people portrayed in the news and on television shows are very high-functioning and hardly look disabled, whereas the reality of profound autism is disturbing. Studios won’t soon be developing sitcoms around the enormous burdens severe autism places on individuals and their families. So people watch the Good Doctor or the Big Bang Theory and assume people with autism become surgeons or scientists.
In fact, the word ‘autism’ is now applied so broadly as to be practically meaningless. In the previous version of the “Diagnostic and Statistical Manual of Mental Disorders” (DSM-IV), ‘autistic disorder’ was defined as a specific cluster of characteristics, including abnormal social interaction and communication, and a restricted repertoire of activity and interests. The manual included separate diagnoses for Asperger syndrome and pervasive developmental disorder-not otherwise specified — which were typically given to people on the milder end of the spectrum.
But in the current version of the diagnostic manual, the DSM-5, those diagnoses have disappeared. Since 2013, when this version debuted, individuals with a wide range of autism features have all received the diagnosis of ‘autism spectrum disorder.’

This means that someone diagnosed with autism can have a genius-level intelligence quotient or have intellectual disability and a score far below average. It can include someone who has no language, minimal language or intact language. It can apply to an individual who has self-injurious, aggressive behavior, or someone who has trouble navigating the social scene in the school cafeteria. It can describe a person who graduated from Harvard Law School or an individual who exited high school with a certificate of attendance. No wonder there is confusion.
What Families Want from Nursing Home Reform Post-COVID: No More Lockdowns and a Seat at the Table
By Alex Spanko, Skilled Nursing News, March 18, 2021

The federal government last week ended a year-long nightmare for families across the country when it announced the relaxation of visitation bans at nursing homes in all but a few limited cases.

But for the family members who spent 2020 working to reunite with their loved ones, the work won’t end along with the expiration of strict lockdowns.

To learn more about what family members of nursing home residents want from the reform efforts percolating in states and Washington, SNN invited Mikko Cook and Carrie Leljedal to join our “Rethink” podcast.

Cook is a co-founder of the Essential Caregivers Coalition, and Leljedal leads Illinois Caregivers for Compromise.

Each has a unique perspective on the lockdown: Cook’s father has late-stage Alzheimer’s and resides at a skilled nursing facility in Albany, N.Y., while Leljedal became active in the movement while trying to arrange visits with her 33-year-old son, who has a developmental disability and seizure disorder. He lives in a combination intermediate care facility (ICF) and SNF in southern Illinois.

Their experiences were different, but both have concrete and insightful ideas about how families can better be incorporated into decision-making — both at the facility and policy level — when the next crisis strikes long-term care.
State News:
For Medically Vulnerable Floridians, Vaccine Brings Relief after Search for Access
By Natalie Weber, Tampa Bay Times, March 12, 2021
One by one, members of the Hubner household were vaccinated — except for the one who needed it most.

Linda Hubner, 70, received the Pfizer vaccine six weeks ago and a family friend that lives with her received the Moderna vaccine three weeks ago. They qualified because of their age. But Hubner struggled to find an appointment for her 31-year-old daughter, Hanna, who has Down Syndrome and is considered at higher risk of complications from COVID-19.

It wasn’t until the end of February that Gov. Ron DeSantis expanded access for medically vulnerable people, making vaccines accessible through physicians, pharmacists and advance practice registered nurses. Starting Monday, all providers authorized to administer vaccines will be allowed to provide shots to medically vulnerable people.
As a result of the February executive order, Hanna was able to receive her first dose of a COVID-19 vaccine at a Publix on Friday. Now, her mother hopes she will soon be able to return to in-person activities at Creative Clay, a local art center serving people with disabilities.

“She hasn’t had the social opportunities that she’s used to, which is really a continual, persistent problem for people with disabilities,” said Hubner, who lives in St. Petersburg. Once the family is fully vaccinated, Hubner looks forward to returning to her work as an early intervention teacher in person and getting visits from her grandchildren.

“We’re grateful that they’re available now but it’s not been easy,” Hubner said of the vaccines. “The disability community tends to be not prioritized.”
Texas - Bill Streamlines Guardianship Law for Disabled Kids Who Turn 18
By Rudy Koski, Fox-7 Austin, March 18, 2021
HB 1675 streamlines the process for parents who want to retain guardianship after their disabled children become adults.

Caleb Thompson turned 18 while he was in a hospital room. What his birthday picture doesn't show is how becoming an adult also changed things for his parents, D'anne and David Thompson.

Caleb is now about to turn 21 and the Thompsons are able to continue to care for him after obtaining guardianship. But getting that status was a difficult and expensive judicial process.

"So we started this process when he was 17, and it took almost a year, it took $5,300, it took a lot of time I don’t know how many hours me meeting with people, going to court, just so we could keep doing what we were doing, that just seems crazy to me," said D’anne.

"In a 2-day process from a time he leaves the hospital, we are no longer presumed to, we are not legally capable to make his decisions, and we are presumed not to be fit to make his decisions," said David Thompson.
\At that moment the Thompsons lost the ability to do what they had been doing for nearly two decades. They could only get it back by going to court. "We were assumed unfit as parents until this court decided all of a sudden we were fit," said D'anne Thompson.

The fight has now moved to the state capitol to cut the red tape.

HB 1675 streamlines the process for parents who want to retain guardianship after their children become adults. A key part is an exemption from a full-court hearing. The bypass is only for parents with no complaints of abuse, neglect, or criminal history. It requires a letter from a treating physician or a psychologist, certified by HHS.
New York - Republicans Urge Garland to Probe COVID-19 Deaths in New York Group Homes
By Celine Castronuovo, The Hill, March 17, 2021

A group of House Republicans from New York are calling on Attorney General Merrick Garland to investigate whether the state’s directive on COVID-19 patients returning to group homes violated civil rights and if the state accurately reported coronavirus deaths in these facilities. 

New York GOP Reps. Claudia Tenney, Elise Stefanik, Lee Zeldin, Chris Jacobs and Nicole Malliotakis on Wednesday sent a letter to the Justice Department arguing that “New York State’s Policies placed those with intellectual or developmental disabilities at increased risk of exposure to COVID, and we fear COVID-related deaths in group homes have been underreported.” 

The letter follows sharp criticism from lawmakers in response to New York Gov. Andrew Cuomo’s (D) office admitting to underreporting coronavirus deaths in New York nursing homes. 

Republicans and Democrats alike have called for investigations into Cuomo’s handling of the pandemic, while lawmakers have also called for Cuomo to resign following sexual harassment and inappropriate behavior allegations levied against the governor from multiple women in recent weeks. 

In Wednesday’s letter, the GOP representatives specifically reference an April 2020 directive from the New York State Office for People with Developmental Disabilities (OPWDD), which stated, “No individual shall be denied re-admission or admission to a Certified Residential Facility based solely on a confirmed or suspected diagnosis of COVID-19.” 

The lawmakers argue, however, that the directive’s “practical effect” was to “return COVID-positive patients who were no longer symptomatic to group homes.”

Thus far, the OPWDD has publicly reported 552 COVID-related deaths across New York’s more than 7,000 group homes, though the Republican lawmakers stated they “have reason to doubt New York State’s numbers given its poor track record of transparently sharing COVID-19 data.” 

Given that the group home directive was similar to the one issued in March for nursing homes in the state, the New York Republicans argued that “the OPWDD must be scrutinized,” to determine the policy’s true impact on coronavirus cases and fatalities.
Coronavirus Updates:
Covid-19 Tracker:
More Than 420 Million People Have Gotten Vaccines Worldwide;
The U.S. has Administered 118 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

VOR OPPOSES:

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.


VOR SUPPORTS:

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.
VOR ❤️s OUR 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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