February 19, 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
Misericordia Celebrates 100 Years of Acceptance and Respect
By LeeAnn Trotter, NBC-5 News, Feb. 18, 2021
Misericordia Heart of Mercy is celebrating it’s 100th anniversary and the executive director, Sister Rosemary Connelly, has been there over 50 years. 

When Connelly started the job in 1969, the agency was caring for young children with downs syndrome, and she noticed there were no formal programs for the children.

“So I called universities and hospitals and I asked for help because I knew that they deserved programs and I didn’t know how to start them,” Connelly explained. 

But she said no one could help her. So Connelly and her staff created their own programs.

“We had physical therapy that we created; we bought a sears swimming pool; we got bicycles and tires; and we were just creative,” Connelly said.

These days, Misericordia serves more than 600 children and adults with developmental disabilities.
Operations are scaled back a bit due to the coronavirus pandemic, but typically there are over
25 programs designed to meet the needs and abilities of each resident, from therapeutic services for the non-ambulatory population to programs in art, recycling and technology.

“Our children and adults live wonderful lives. They are happy people, they know they are appreciated and valued, so we are just so blessed," Connelly said.

On Feb. 26, the Women’s League of Misericordia will host their annual fundraiser, Heart of Gold -A Night at the Races, and they hope to raise more than $600,000.

“You have to go there to witness it, to really see what they do, the incredible work that they do,” Ann Weithers, president of the Women’s League, said.

National News:
Despite High Risk, Access To COVID-19 Vaccines Uneven For Those With IDD
By Michelle Diament, Disability Scoop, February 18, 2021
People with developmental disabilities are at significantly greater risk of dying from COVID-19, but whether or not individuals have access to vaccines is coming down to which state — or even which county — they live in.

Disability advocates say that access has increased. As of December, just 10 states specifically addressed people with developmental disabilities in their COVID-19 vaccine rollout plans, according to the American Network of Community Options and Resources, or ANCOR, which represents disability service providers across the nation. To date, ANCOR said that has grown to at least 31 states.

Research shows that people with developmental disabilities face a three times higher risk of dying from COVID-19. Accordingly, disability advocates have been pushing for months to ensure that this population receives early access to life-saving vaccines. But, when the Centers for Disease Control and Prevention failed to specify those with developmental disabilities in its recommendations
for priority groups, advocates were left to plead their case with individual states.=

As a result, in some places like Tennessee, vaccines were made available in the highest priority group to all adults with developmental disabilities who are unable to live independently. However, states like California and North Carolina moved people with disabilities down on their priority lists in favor of other groups, leaving advocates to fight to regain quicker access. California subsequently reversed course under intense pressure from advocates.

Still, other states like Mississippi, Idaho and Arkansas “have been pretty silent” about people with developmental disabilities, Martin said.

'I Put My Life on Hold:' Disability Groups Plead for Vaccine
By Lindsay Whitehurst, Associated Press via Star Tribune, February 14, 2021

Though many people with disabilities are more vulnerable to COVID-19, in some U.S. states they fear being left behind in a massive effort to get limited vaccines into the arms of those who need them most.

People with disabilities have been pushed down the priority list in places like North Carolina and California, where the state reversed course after days of public pressure. In Minnesota, parents are begging unsuccessfully to give their vaccination spots to their children whose Down syndrome makes them up to 10 times more likely to die if they catch the virus.

With vaccine supplies limited and the rollout shaky in much of the United States, getting a shot is difficult. Groups like older people and essential workers are in dire need of the vaccine and state health departments say their plans are aimed at making the most of limited supplies. But the pandemic has also taken a disproportionate toll on people with disabilities around the world.

Some states like Ohio and Tennessee are already vaccinating people with intellectual and developmental disabilities. In Tennessee, officials said data showed people with those disabilities had a death rate three times higher than the general population, and put them higher on the priority list. In Ohio, a wide range of people with disabilities became eligible for the vaccine in late January, said Kari Jones, head of the Down Syndrome Association of Central Ohio.

Even if people with disabilities do have some priority status, there can be confusion on the ground. Many states have given priority to people with high-risk medical conditions, but if orders don't specifically mention conditions like Down syndrome, they can be turned away from getting their shots, said Michelle Whitten with the Global Down Syndrome Foundation.

In some cases, states have listed a specific condition without including other rare conditions where there may be fewer scientific studies on the risk level. Betty Lehman of Centennial, Colorado, said her 32-year-old son's disability-associated medical complications left him near death more than once a child. But his specific conditions don't move him up the list, so he likely won't be eligible for the shot until this summer, when other adults his age are eligible, she said. State health officials say their plan is aimed at saving as many people as possible, but it remains a hard pill to swallow for families like the Lehmans.

"This is a horror show of a broken value system," she said. "My son is at massive risk, other people I care about are at massive risk, and people are turning a blind eye to them."

Opinion: Ignore the Movies; Guardians Really Do Care a Lot
By Pamela Wiener, Sun Sentinel, Feb. 17, 2021
Generally, the public is aware of guardianship because of Britney Spears or because of Rebecca Fierle, a Central Florida guardian who was arrested last year and charged with malfeasance. Now, Netflix is releasing a movie on Feb. 19 called “I Care a Lot,” which centers on a fictional guardian in the Fierle mold.

Fierle was a professional guardian who allegedly disregarded input from a client’s loved ones, resulting in his premature death. In addition, she purportedly received payments from a hospital system to serve as guardian to hundreds of individuals. She has resigned from all her sanctioned and apparently unauthorized cases.

“I Care a Lot” looks like a spellbinding thriller, with Peter Dinklage, Dianne Wiest and Rosamund Pike providing star power. It may prove to be a compelling, gripping movie, but it is not authentic.

The Florida State Guardianship Association (FSGA) wants the community to know that our members work hard to care for some of Florida’s most vulnerable citizens. As professionals, we follow a code of ethics and statutory guidelines, caring for individuals and managing their property after they have been deemed incapable of doing so themselves. Typically, our clients have serious chronic mental illness, dementia, a developmental disability or traumatic brain injury.
Once deemed incapacitated by a court of law after being evaluated by licensed mental health professionals, physicians and others, clients are nurtured by guardians who work to heal and enhance their quality of life with the goal of ending guardianship whenever possible. When clients are afflicted by a dementia of some kind, which is irreversible and fatal, we make sure they are safe, cared for and living with as much dignity as possible. Clients do as much as they can for themselves, but guardians are responsible for making important decisions, managing their affairs and maintaining safety. All of this is under court supervision.

In anticipation of the release of “I Care a Lot,” FSGA wants the public to know that we strive to preserve the dignity of people in need of support and care. We make sure that their assets are preserved, used only for education, care or other essentials for their benefit. We make every effort to facilitate family relationships if that is the client’s desire. We do not terminate or corrupt them. For more information about our good work, check out the FSGA website or contact your local guardianship association and invite a speaker to your next meeting.

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:
South Carolina - S.C. Disabilities and Special Needs Director Removed from Office
By Jared Kofsky, Live 5 News, February 18, 2021
This is a developing story:
Mary Poole, the state director of the South Carolina Department of Disabilities and Special Needs, was suddenly removed from her position on Thursday afternoon. The DDSN Commission voted to remove Poole from service as state director and remove her from service as a DDSN employee during a regular meeting after a roughly three-hour executive session.

Members appointed Legal Counsel Constance Holloway as the agency’s interim director and also implemented a temporary hiring freeze at DDSN.

Commission members did not state in the meeting why Poole was removed from office. A DDSN spokesperson could not immediately be reached for comment.

South Carolina - S.C. Leaders Introduce Bill to End Subminimum Wage for People with Disabilities
By Kate Merriman, WMBF News, Feb. 18, 2021
A joint resolution was filed last Tuesday at the South Carolina Statehouse in the hopes of end subminimum wage for disabled South Carolinians.Sen. Katrina Shealy introduced the joint resolution to prohibit the use of Section 14 (c) of the Fair Labor Standards Act of 1938. The certificate under the act allows employers to pay disabled people less than the minimum wage of $7.25 an hour.

Sarah Nichols, director of public relations for ABLE South Carolina, said if it passes a task force will assemble to create a three-year transition plan to phase out subminimum wage.

According to Nichols, it doesn’t mean someone will be fired but it does mean employers cannot hire anyone else under subminimum wage.

Nichols said right now about 1,200 South Carolinians are paid subminimum wage. The U.S. Department of Labor tracks which businesses have the certificate and how many people they employ.
It shows nine South Carolina employers have a certificate and 11 others are pending.

WMBF News’ sister station in Charleston spoke with the disabilities board of Charleston County, who uses its certification and employs 322 people. The board there said subminimum wage isn’t bad, arguing the bill would have a negative impact on people with severe disabilities because they couldn’t find work without programs like they offer.

Residents of NE Wisconsin Long-term Care Facilities Face Evictions due to Proposed Medicaid Cuts
By Joshua Peguero, WBAY News, Feb. 17, 2021
Several people staying at long-term care facilities may be forced out in the next few weeks because of proposed cuts to Medicaid funding.

That looming decision, which is due to a decrease in the amount of money the state of Wisconsin is allocating this year to some Managed Care Organizations, has some families in a state of panic.

“I was shocked and I thought, I didn’t know where we can turn really and my first thing was to pray about it,” Chris Kriescher of New Franken said.
Her 35-year-old son Nicholas has mental disabilities and lives at Infinity Care in Luxemburg.

“Nick is happy there. We see him every week, we pick him up and we go to church,” Chris said.

Their son’s four-year stay at Infinity is in jeopardy because of cuts Lakeland Care Inc. is proposing to the funding his facility receives for his stay.

Cheryl Lacenski was as shocked as the Kriescher family. Her brother is also staying at Infinity and he’s dealing with dementia. “He needs 24/7 care so he has to be in an 8 bed or less facility. He can’t be at the one here in Denmark,” Lacenski said.
What the Kriescher and Lacenski’s have in common is their relatives are enrolled in Lakeland Care, which is one of five Managed Care Organizations or MCO’s in Wisconsin.

“He’s not just some merchandise you can throw out in the street. Lakeland gave Infinity Care the option, either they take the funding cuts or they gave them a 30 day eviction notice,” Lackenski said.

As Action 2 News has been reporting, Lakeland is proposing a nine percent cut set for April 1 in payments it sends some of the long-term care facilities where their members live.

MCO’s distribute funds to these facilities for patients who are part of the state’s Medicaid “Family Care” program.

According to the Wisconsin Department of Health Services, it allocates Medicaid funds to MCO’s based on projected costs and that includes the complexity of care for each member.

Group Homes in Missouri Struggle to Get Vaccine
From Associated Press, via News Tribune, February 124, 2021

Maria Schroeder was worried and increasingly anxious. It was weeks after coronavirus vaccine distribution had started in Missouri, and she still had 11 intellectually disabled residents who required 24-hour support — and no vaccine.She expected good news from the state or elsewhere about when and how to get a vaccine for residents and staff members, alike. Then, finally, in mid-January, the state sent her a list.

But Schroeder, assistant director for L'Arche St. Louis, which runs three group homes in St. Louis County, quickly realized the list was cluttered with every brick-and-mortar CVS, Walgreens and Costco — locations that, while approved to vaccinate, often had no doses of vaccine.

Over the next two work days, Schroeder made 200 calls, the St. Louis Post-Dispatch reported.

"We're a very small agency, we don't have a lot of connections," Schroeder said. "It was very obvious if I didn't do this, we weren't going to get vaccines."

The leaders of St. Louis-area group homes that adults with intellectual disabilities have struggled to secure doses of COVID-19 vaccine for their staff and clients. With little help from the state, some said, the group-home leaders began a dogged and sometimes desperate hunt. They made hundreds of phone calls, sent staff driving across the state, and cut deals with colleagues, health care services, and anybody else they could reach.

Most have now gotten at least some doses. But their stories illustrate the intense shortage of communication, distribution and vaccine itself, especially in the rollout's early days.

Even for the high-risk.

Minnesota is Not Doing So Well in Deciding who gets a Vaccine
By Elizabeth Schiltz, Twin Cities Pioneer Press, February 14, 2021

The daily bombardment of numbers and statistics about Covid-19 – the hospitalizations, the deaths, the numbers of people who have received first or second doses of the vaccine – makes me feel like a Londoner during the Blitz. I just want to hide in the bomb shelter of my basement with my knitting and another episode of whatever Netflix has to offer. I do understand the impulse behind the refuge we try to find in numbers: If we can measure any aspect of this baffling and devastating virus, maybe we can gain control of it.

But as I try to digest that daily flood of numbers, I keep hearing in my mind the saying that’s often misattributed to Gandhi: “A civilization is measured by how it treats its weakest members.”'

By that measure, Minnesota is not doing so well. People with disabilities are experiencing dramatically more adverse consequences from the pandemic than other populations.

Some physical disabilities can be underlying medical risk factors, of course. But equally troubling is the research consistently showing that people with intellectual disabilities are significantly more likely to die from Covid-19 than others – some studies show up to 10 times more likely. The research supporting these findings has led the CDC to add one category of intellectual disability – Down Syndrome – to the list of underlying medical conditions increasing the risk for severe illness from the Covid virus. Some states, like Pennsylvania, Ohio and Texas, are following the lead of the CDC and including people with Down Syndrome or developmental disabilities generally, among those currently eligible for Covid vaccinations. An online petition urging Gov. Walz to follow the science and add Minnesotans with Down Syndrome to Phase 1b of the vaccination plan has gathered almost 10,000 signatures.

People with disabilities are suffering disproportionately from the effects of the pandemic in other ways, too. Online education has been a challenge for all school-aged children, but children with disabilities are really being left behind. It is proving almost impossible for schools to offer the personalized services and supports required to ensure the education of children with disabilities, no matter how dedicated and creative the special education teachers and aides might be. The Office for Civil Rights for the Department of Education has launched investigations in a number of states based on parents’ complaints that these failures violate the legal obligations of the Individuals with Disabilities Education Act.

Georgia - Advocates for Disabled Community Push to get Vaccine Sooner
By Natisha Lance, 11Alive, February 16, 2021

The families and advocates for people with developmental disabilities is pushing to get them vaccines sooner. "As a mom I want my son to be safe, and not be scared that he is going die from this," explained Stephanie Meredith. "It’s a constant shadow to live under that."

Meredith’s son, Andy, has Down syndrome. She is just one of a group of parents and advocates asking the state to move those with intellectual and developmental disabilities and their caregivers up on the list for vaccine eligibility. 

"We were pretty surprised when we saw in the vaccine rollout plan," Meredith recalled. "People with intellectual disabilities and developmental disabilities would not be included until (phase) 1C, which puts them behind essential services workers."

That means Meredith’s son could get the vaccine as a grocery store employee sooner than someone with Down syndrome, even though the CDC puts them at an “increased risk of more severe illness” from COVID-19. 

Eric Jacobson, the executive director of the Georgia Council on Developmental Disabilities, said it could put this population, said it's cause for concern.

"People with disabilities and their families and staff that cares for them have been exposed to the virus on higher levels, and they’ve had to isolate themselves even more to make sure there is not that spread of the virus," he said.

That's why Jacobson, on behalf of the council and other advocates, sent a letter to Gov. Brian Kemp and other state officials in December asking for the community to get bumped up before the vaccine rollout plan was released. The letter referenced states like Ohio and Oregon, which put disabled individuals in their first two priority groups. 

Jacobson said they still have not received a response to the letter. 

Colorado Developmental Disabilities Council: 'People with Intellectual and Developmental Disabilities have been Forgotten'

By Nelson Garcia, News 9, February 15, 2021

When it comes to protecting his son, Bob Lawhead said he wants his son to have the ability to be protected from COVID-19."My son is 24 years old. He has Down syndrome," Lawhead said. 

Lawhead is the policy advisor to the Colorado Developmental Disabilities Council, a group that released a report stating that people with intellectual and developmental disabilities are 4-to-5 times more likely to die from COVID-19 compared to everyone else.

"When you have 4-to-5 times greater risk of death, there is reason to prioritize you," Lawhead said.

"Many people with developmental disabilities just have a difficult time understanding the importance of social distancing, wearing masks and hand washing," Lawhead said.

Lawhead said Jess has been trapped in his home for months. He can't go out to volunteer. He can't go out to work at Cosmo's Pizza in Boulder. But Lawhead said the issue is bigger than his son. He said it impacts an estimated 75,000 people around Colorado at a time when teachers and other essential workers are starting to get the vaccine.

"I appreciate the fact that Colorado is trying to make that balance," Lawhead said. "We do feel however that people with intellectual and developmental disabilities have been forgotten in that metric."
Lawhead said he is making an appeal to the governor to add this group of people with disabilities to the vaccine prioritization list. 

"It is a little frustrating to see other people moving into the 1B category and obviously moving up ahead of this very, very vulnerable group," Lawhead said.

Coronavirus Updates:
Covid-19 Tracker:
More Than 193 Million People Have Gotten Vaccines Worldwide;
The U.S. has Administered 59.1 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


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.


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?

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