February 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
VOR & YOU:
Please Support Vocational Centers & 14(c)
Yesterday we sent out an Action Alert to support Vocational Centers for individuals with I/DD and Autism.

If you haven't signed on yet, we urge you to do so now, These centers, and the 14(c) wage certificates that make them possible, are crucial to the well-being of tens of thousands of individuals who occupy a specific niche, being too skilled to be fulfilled by the activities of day programs, yet not meeting all of the criteria to make them good candidates for competitive, integrated employment.
National News:
The following article refers to a letter supporting increasing funding for Home and Community Based Services (HCBS). What is not written in the letter below is any mention of the fact that a similar bill, the Disability Integration Act, was supported by many of the same senators who have proposed this bill, and was included in the platform of the Biden campaign.

The Disability Integration Act included language that would "phase out", and ultimately eliminate, Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs).

We believe that this letter, while not mentioning closing ICF's, would be a first step in eliminating them, a position Sen. Bob Casey has supported for many years.
Senators Call On Biden To Uphold Promise To Expand Community-Based Services
By Michelle Diament, Disability Scoop, February 12, 2021

Dozens of U.S. senators are urging President Joe Biden to make good on his campaign proposal to invest $450 billion in Medicaid home- and community-based services.

In a letter to Biden and Vice President Kamala Harris this month, 31 Democratic senators said that the administration should proceed with a plan to expand offerings for people with disabilities.

Last summer, Biden unveiled a broad proposal to address the nation’s “caregiving crisis,” which included a commitment to spend $450 billion over 10 years to allow people to choose to receive care in community-based settings. Biden said he wanted to give states enough money to cover the full cost of providing home- and community-based services to each person with a disability who’s currently on a waiting list.
Advertisement:
The 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.

This is easy. Every day, at the end of the 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:
Florida - For those with Developmental Disabilities, There's No Quick Pass to a COVID-19 Vaccine
By Britt Kennerly, Florida Today, February 7, 2021
Ranging in age from 18 to 80 and beyond, they might not grasp the danger of COVID-19, much less their susceptibility to the virus.

They face unique challenges, from physical limitations to following safety protocols like masking, social distancing and handwashing.
Yet, across Brevard County and Florida, many people of all ages with developmental disabilities have yet to receive a first dose of a COVID-19 vaccine, or word on when that might happen.

From congregate homes to individuals caring for adult children with developmental disabilities and often, varied medical problems, a lack of clear direction from the state has left those who work in the field, and families, to advocate for their residents and children.

Concern has been constant since the onset of the pandemic, said CEO Jeff Kiel, at Promise in Brevard in West Melbourne, an independent and supportive living community for adults with cognitive and physical disabilities.
"Many of these people don’t have the type of individual support system to advocate for them and navigate the complexities of getting an appointment, scheduling and even transportation," he said.

So, in mid-December, with no word on when and how vaccinations might occur for Promise residents — some of whom work in the community — Kiel and two colleagues working in the disabilities field penned a letter to Gov. Ron DeSantis, asking that this vulnerable population be prioritized.

They pointed out that the CDC finds those with disabilities three times more likely to possess underlying medical conditions. That they can have difficulty conveying symptoms of illness.

They didn't hear back.
North Carolina - 'We're Looking for a Place at the Table': People with Disabilities, Chronic Conditions Feel Forgotten by State COVID-19 Vaccine Plan
By Samantha Kummerer and Maggie Green, ABC-11 News, February 7, 2021
Millions of North Carolinians feel left behind in the state's new COVID-19 vaccine priority list.

"It's just awful to be in this kind of position where you have to honestly argue your worthiness to be in a higher priority. That's an awful way to put it but I'm not sure how else to put it exactly," explained Jackie Holcombe.

Holcombe's daughter. Lindsay, has Down syndrome which places her at a higher-risk for death from COVID-19. Lindsay is one of the estimated 3.8 million North Carolinans under 65 years old that have at least one chronic condition.

When North Carolina first released its vaccination plan people with chronic conditions fell in phase 2. Now, state leaders have made changes that cause Lindsay and others with chronic conditions to wait until group 4, instead prioritizing people 65 years and older and frontline essential workers.
"It's just disheartening to have that dropped. What changed? What changed? I'll be honest here, Lindsay became a little less important to be vaccinated," Holcombe said.

She's not the only one searching for answers. The North Carolina Down Syndrome Alliance said the shift places individuals with Down syndrome in 'unnecessary jeopardy.' The organizations is now demanding the state prioritize them in the plan.

"It's not a matter of please bump someone else down so that we can bump our loved ones up, it's just wanting people to acknowledge that it's risky for people with intellectual and developmental disabilities to get COVID," Holcombe said. "Her risk is higher than so many and we're looking for a place at the table."

When the state revised it's vaccination plan, the new priority allowed for people 65 years old and older to be in the first groups, bypassing those with chronic conditions. This is estimated to add around 1 million people to the line, based on the Census American Community Survey from 2019.
People with Disabilities Feel Left Out as Oklahoma Rolls Out COVID-19 Vaccine
By Kassie McClung, The Frontier, February 6, 2021
Wanda and Rick Felty plan their days around keeping their 32-year-old daughter safe from the coronavirus. They don’t go to restaurants or have family members over to their home. They limit grocery shopping trips to once per week.
The risks are high.

Their daughter, Kayla Felty, lives at home and requires almost constant care. She is blind, nonverbal and is considered to have a severe intellectual disability.

Kayla Felty and other Oklahomans with intellectual and developmental disabilities are three times more likely than the general population to die from COVID-19, according to one study.
“I can’t imagine what COVID-19 would do to her,” Wanda Felty said. “Our fear is great.”

But people with disabilities who live at home have been left out of high priority status in Oklahoma’s vaccine distribution plan.
About eight weeks after Oklahoma started its vaccine rollout, people with developmental disabilities, their caregivers and families are frustrated and disheartened they aren’t being prioritized in the state’s plan. Meanwhile, states like Texas, Tennessee, Missouri and Indiana are placing those individuals in higher priority groups.
Like most states, Oklahoma is distributing the vaccine in tiers. The state’s four-phase plan includes adults with comorbidities in phase two — the next group in line for a shot — but there is no explicit mention of those with intellectual or developmental disabilities.
New Mexico Opens Vaccines to Teens, Adults with Disabilities
The Santa Fe New Mexican, February 5, 2021

New Mexico is now administering the coronavirus vaccine to residents 16 and older with intellectual or developmental disabilities, state health officials announced Friday.
The move comes as the state expands vaccine eligibility for people who face a greater risk of severe illness if they contract the virus.

Until now, people 75 or older were given priority for the vaccine.

“If you are a New Mexican with an intellectual or developmental disability, you are now eligible for vaccine whether you receive services or not,” Jason Cornwell, deputy secretary of the state Department of Health, said in a statement.

Cornwell urged residents with disabilities to register at vaccineNM.org and said the Department of Health would contact them when the vaccine is available.

People with disabilities have higher death rates from COVID-19 than people without disabilities, studies have shown. They also are more likely to have underlying conditions, such as respiratory diseases, that could lead to more severe symptoms of the virus, according to a study published in the Disability and Health Journal.

“It is critical that the vaccine is available to individuals who are at greater risk of exposure to — and severe illness from — COVID-19,” Linnea Forsythe, director of the Governor’s Commission on Disability, said in a statement.

“The mortality rate for people with [intellectual or developmental disability] who contract COVID is at least twice as high as the mortality rate for COVID patients without IDD,” she said. “We applaud DOH’s change to the vaccine registration website that gives people with IDD the option to identify themselves and receive priority in getting vaccinated.”
California Lags Behind Other States in Prioritizing COVID-19 Vaccine for People with Disabilities
By Josh Haskell, ABC-11 NEWS, February 9, 2021

California's disabled population under the age of 65 continues to be in the dark about when they'll receive the COVID-19 vaccine.

Kathleen Kramer lives in Ventura County, where people 75 and up get the vaccine. But she received permission for her brother, who is 74-and-a-half -years-old, to get the shot because he suffers from a severe intellectual and developmental disability. When Kramer arrived at the Ventura County Fairgrounds, her brother was turned away.

"He is autistic and I am his conservatorship. And, they said, 'I'm sorry, we can't do him. He's not 75,' and I thought it was completely unfair. I wasn't trying to take advantage of it," said Kramer.

This comes as states across the country, including Ohio, New York, New Mexico and Oregon are all offering the vaccine to people with disabilities even if they're under 65.

"The disability community is never brought up at all. It is definitely is hard for me. I want to be protected, but I'm not getting the answers I should be getting from the government," said Carlos Mitchell, a 45-year-old disabled man who lives in Anaheim.

Tim Jin has cerebral palsy and is considered high risk for COVID. But he's not yet eligible for the vaccine because of his age. Eight caregivers who help the 45-year-old have received the vaccine, and some are under 65 and healthy. But the person they take care of remains in isolation, terrified of the virus.
California - Newsom Pledges Vaccine Priority for People with Developmental Disabilities
By Abbie Alford, CBS-8 News, February 8, 2021

For months advocates for individuals with intellectual or developmental disabilities (IDD) have been pushing to make vaccines a priority, and Governor Newsom is hearing their concerns.On Monday, during a tour of the Petco Park Vaccination Super Station, Newsom was asked about vaccinating the IDD population. “We've got to take care of the most vulnerable and people in the developmentally disabled community,” said Newsom.

The governor pledged to vaccinate California’s 350,000 IDD population.

“It almost made me cry. It was just thrilling to know that the governor recognizes that individuals with developmental disabilities are a high priority and at risk,” said Cindi Harris.

Her sister-in-law is Sally Harris, who has a developmental disability. She is 64 years old and lives on her own with two housemates in La Mesa. Sally’s brother also worries about her not being vaccinated. “People with developmental disabilities often have preexisting conditions, they often don't understand the social distancing rules, and they like people in general,” said David Harris.
Coronavirus Updates:
Covid-19 Tracker:
More Than 168 Million People Have Gotten Vaccines Worldwide;
The U.S. has Administered 50.1 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.
Monthly Donations and
VOR’s “21 in 21” Campaign

Your monthly donation of $21 will allow us to continue communicating face-to-face with members of Congress and fight to stop legislation aimed at closing Intermediate Care Facilities or Facility-Based Work Centers across the country.

Your monthly donation of $21 will ensure a seat at the table for your family member and give you a voice in decisions that affect policies that govern their health, residential care, and daily activities.

Your monthly donation of $21 will insure continued regional conference calls where family members across the country have a voice and share concerns and ideas. It will help pay for the VOR Voice and our Weekly Newsletter.

Your monthly donation of $21 will insure a continued Voice of Reason.


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.

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 ❤️ 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. 

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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