November 20, 2020
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:
Let's celebrate Giving Tuesday a week early this year.
Let's give thanks before we sit down to eat.

Giving Tuesday usually comes five days after Thanksgiving.
After Black Friday, Small Business Saturday, and Cyber Monday.
This year, let's think about those whose needs are greatest,
and make sure we have provided for them first.

This Tuesday, November 24th, please make a donation to VOR
in the name of someone you love with
Intellectual and Developmental Disabilities.
National News:
The following is the beginnning of a long, beautifully-written, heart-wrenching story about the life of a DSP in a Virginia group home when the Coronavirus hit. If you are not able to connect to the full story, you might consider looking for the link to the Post's trial subscription of $1 for 4 weeks.
Desperately Trying to Wipe the Virus Away
By Jessica Contrera, Washington Post, November 18, 2020
They’d always checked temperatures inside this house. Twice a day the thermometer was moved from bedroom to bedroom, tucked under five arms, offering five beeps and five numbers, assurances that the women who lived here were, for now, okay.

A beep for Andrea Outman, whose oxygen tubes curved around her wheelchair, the only resident of the house who could fully communicate through speech. For Carolyn Davis, the only one who could walk, her graying braids bouncing as she paced. For Ericka Yates, who kept being taken back to the hospital, the complications of her medical history complicating her life again.

A beep for Wah Der Yee, who had spent nearly her entire life in a Virginia-run institution before moving to this suburban ranch in Dumfries, one of America’s more than 76,000 group homes for adults and children with disabilities. Here, medical care was mixed with dance parties and craft classes, grocery runs and dinner outings, neighborhood walks and park picnics. Or it was, until the coronavirus pandemic hit.

By that Tuesday in May, the women had spent 56 days inside their Northern Virginia home, as their caregivers tried to keep the coronavirus out. Now it was Day 57, and the fifth resident, whose guardian asked that she not be named, was getting her vital signs checked. Blood pressure, oxygen level and then, the beep of the thermometer.

“Too high,” a nurse said, watching the little digital number go up. She cleared it and tried again. She shook her head.

She dialed a supervisor and a doctor, while her co-worker, Angela Reaves, knelt beside the wheelchair of the resident, a 52-year-old woman who rarely made facial expressions or moved much at all.

“You’re okay,” said Angela, who, like everyone in the house, went by her first name here. For two years, Angela had cared for this resident five days a week. She cooked for the women who didn’t need liquid meals and gastronomy tubes to eat. At 62, Angela heaved them onto shower chairs, washed their aging skin and changed their incontinence pads. She talked to them as if they understood everything and were able to reply.
“You’re going to be fine,” she promised beside the wheelchair. “I know that.”

Angela Reaves became a direct support professional, caring for five disabled women, after working in a restaurant and at an insurance company. She loved the group home's residents.
Angela was wearing a mask and gloves, but in her work, social distancing would simply be neglect. She was a “direct support professional,” the caregivers who made it possible for tens of thousands of people with disabilities to be moved out of large, impersonal institutions and into humane, home-based care.

The pandemic had transformed these poorly paid caregivers into essential workers who risked their lives to protect the disabled from a virus that could easily kill them. But while state and federal funding has poured into hospitals and nursing homes, those who care for the disabled have been repeatedly snubbed. The agencies they work for have had to cut staff, end programming, beg for promised Medicaid reimbursements and scramble for personal protective equipment. No one is keeping track of how many direct support professionals across the country have become infected or how many have died.

And still these caregivers — mostly women of color making near minimum wage — showed up each day, hoping they wouldn’t have to make the call that Angela and her colleague were placing now.

“911, what’s your emergency?” a dispatcher answered.

In her mask, Angela drove the group home’s wheelchair transport van to Sentara Hospital in Woodbridge, the feverish resident strapped in behind her, medically unable to wear a face covering. Hours later, still unsure whether the resident had the coronavirus, Angela drove her back home.

The nonprofit that ran the group home, the Arc of Greater Prince William County, dropped off the supplies they had stockpiled for a moment like this. They had no N95 masks, only KN95s, the less-reliable Chinese-made filtering masks that didn’t fit as tightly. They had so few gowns that the caregivers would eventually wear 55-gallon garbage bags instead. But they did have one item that the pandemic had made near impossible to find: canisters of Clorox Disinfecting Wipes.

We cannot emphasize enough that our loved ones with IDD and complex medical conditions are most vulnerable to COVID-19. Multiple news sources have been covering this in recent weeks. As the toll of the virus continues to rise, we hope that all of our families respect the needs of others and do their vest to protect one another during this pandemic.
Covid-19 Threatens People with Intellectual and Developmental Challenges
Today Online - November 14, 2020
People with intellectual disabilities and developmental disorders are three times more likely to die if they have Covid-19, the illness caused by the coronavirus, compared with others with the diagnosis, according to a large analysis of insurance claims data.

The finding raises complex questions about how to allocate new vaccines as they become available in limited supplies. Drugmaker Pfizer announced this week that its experimental vaccine is performing well in clinical trials.

So far, guidelines for distributing vaccines have recommended prioritising emergency workers, health care providers and other essential workers, as well as people at heightened risk for severe disease, including some older adults and those with certain chronic illnesses.

The guidelines, which are still evolving, have not specifically emphasised the importance of prioritising the vaccination of children and adults with intellectual disabilities like Down syndrome and developmental disorders.

They emphasise more generally the need to protect people with underlying health problems and those living in congregate settings.

The new analysis was performed by Fair Health, a nonprofit that claims to host the nation’s largest private health insurance claims database, in collaboration with Dr Marty Makary, a public health expert and professor of health policy and management at the Johns Hopkins University School of Medicine; and the West Health Institute,
a group of nonprofits focused on ageing and lowering health care costs to seniors.

The analysis was evaluated only by an academic reviewer and has not been published in a scientific journal.

Fair Health set out to identify who is at greatest risk for dying of Covid-19 by reviewing health claims from nearly half a million Americans of all ages filed from April 1 through Aug 31, said Ms Robin Gelburd, president of the organisation.

“What we find particularly new is the identification of developmental disorders and intellectual disabilities really surfacing to the top in terms of linkages between these categories of comorbidities and the risk of death,” Ms Gelburd said.

Related Stories:

Spotolight on Pennsylvania:
Pennsylvania Governor Tom Wolf and Department of Human Services (DHS) Secretary Teresa Miller intend to close down two State-Operated Intermediate Care Facilities, White Haven Center and Polk Center, in the months ahead. Their goal is to move as many of the residents as possible into HCBS group homesl. Pennsylvania families have filed suit against the Governor to try to keep the centers open.

Wolf and Miller have asked the federal government for help in preventing COVID outbreaks in their HCBS long-term care facilities, admitting that they have a problem facing them. But they have not mentioned the fact that PA's SOICFs have had no deaths from COVID-19 and remarkably low numbers of cases among staff at these facilities.

VOR commends the staff at these quality facilities for their watchfulness and their protection of our family members with IDD during this crisis.
Pennsylvania - Wolf Administration Discusses Strengthening Support For Long-Term Care Facilities
My Chesco, November 18, 2020
Department of Human Services (DHS) Secretary Teresa Miller recently discussed support the Wolf Administration is providing for long-term care facilities through the Regional Response Health Collaborative (RRHC) program, a statewide program providing clinical, operational, and educational support to long-term care facilities preparing for or facing outbreaks of COVID-19 at their facility. Secretary Miller was joined by Janet Tomcavage, executive vice president and chief nurse executive at Geisinger, who leads the Geisinger RRHC in Northeast PA and leadership from DHS and the Department of Health overseeing the RRHCs to discuss the RRHCs work supporting facilities in Northeast Pennsylvania and why the program must continue to be supported in 2021.

The Wolf administration recently sent a letter to President Trump requesting funding to extend the program so it may continue to be a resource throughout the winter. Governor Wolf urged President Trump to work with Congress on a new stimulus package that would support the RRHC program and other resources crucial to protecting the lives, health and safety of Pennsylvanians. The Wolf administration will continue to advocate for additional funding to continue this program no matter the results of the presidential election.

“We know how dangerous COVID-19 can be in congregate care settings, particularly in settings that serve people who are medically fragile or have other health vulnerabilities that make them more likely to experience additional complications from COVID-19, as often is the case for residents of long-term care facilities,” said Secretary Miller. “The unfortunate reality of this pandemic is that outbreaks can and will happen because these facilities and their staff cannot exist in a bubble. What matters most is how we catch and respond to outbreaks when they occur, and the RRHC program is strengthening our response at the state level and making local facilities better equipped to respond. This collaborative approach is saving lives.”

“The Department of Health is pleased with the RRHCs’ work to assist in ensuring facilities have the resources they need to respond to COVID-19 in these vulnerable settings,” Secretary of Health Dr. Rachel Levine said. “As we are in the midst of a fall resurgence, the RRHCs will become even more important. The introduction of COVID-19 into a long-term care facility is a reflection of the number of cases in the community, which is why all Pennsylvanians have a role in helping protect these facilities.”

Pennsylvania’s long-term care system serves more than 127,000 people living in nursing homes, personal care homes, assisted living residences, and private intermediate care facilities. Due to the congregate nature and because they often serve individuals who are older or have co-occurring medical conditions that make them more vulnerable to an acute case of or complications from COVID-19, constant vigilance is necessary to avoid a serious outbreak at these facilities.

State News:
For Iowans with Intellectual Disabilities, Pandemic Hits Especially Hard
Be the 'gift' they and their caregiver needs this holiday season. They deserve it.
By Theresa Lewis, The Gazette, November 15, 2020
COVID-19 has changed all of our lives in so many ways. We are still uncertain of the long term effects of the pandemic, both on societal norms and our physical and mental health. There has been a strong focus, and rightly so, on mental health during the pandemic. The fear and anxiety about exposure, isolation and change in routines have affected so many of us. But imagine if you had little control over your isolation or were not able to fully understand why you can’t continue with your normal daily routines.

While largely forgotten, there are a significant number of individuals in our community who have an intellectual and/or developmental disability (IDD) living on their own, with a caregiver or in a group home or institution. People with IDD were disproportionately isolated before COVID-19, and that isolation has only intensified during the pandemic. They also are especially vulnerable to the physical, mental and social effects of the pandemic and are at a greater risk of infection due to physical health problems, social circumstances and limitations in understanding.

Routine and predictability are important to people with IDD, and disruptions to usual activities can lead to additional mental and physical stress and even disruptive behaviors. For school aged people with IDD, there are questions about whether or not an equitable learning environment is fully possible with COVID protocols and restrictions.

Caregivers for people with IDD are also greatly impacted by the pandemic. Many use services in the community, such as in-home supports, respite and day care. These services allow caregivers to
work, shop and get a break from caregiving demands, which in some cases can mean total care (feeding, dressing, bathing) 24 hours a day, seven days per week.

Due to COVID-19 restrictions, some services cannot be offered or are offered at limited capacity, leaving caregivers to balance work and their own self-care without the level of services and supports they experienced before COVID-19. For those people with IDD living in group homes or institutions, families may be limited in their ability to visit their loved one, and some are not allowed to visit in-person at all.

With the holiday season upon us, people with IDD, their families and their caregivers need your love and support more than ever. If you know a family or caregiver of a person with IDD, reach out to show you care. Offer to help with grocery shopping, laundry or shoveling the driveway and sidewalks. Or maybe just be a listening ear when times are especially stressful and tough. If you know a person with IDD, call or FaceTime to say hello and ask how they are doing. Take a few minutes and engage them in a virtual game of checkers, watch their favorite video, or read them a section from their favorite book. Advocate for them. Help them advocate for themselves. Make sure their rights to equal education, full inclusion in their communities, and ability to make decisions are enforced and respected.

Missouri - Young People with Disabilities Focus of COVID-19 Testing Grant
By Kristina Sauerwein, Washington University School of Medicine in St. Louis, Nov. 19, 2020
Researchers at Washington University School of Medicine in St. Louis have received a two-year, $5 million grant to offer 50,000 saliva tests for the SARS-CoV-2 virus to students, teachers and staff in the six special education schools operated by the Special School District of St. Louis County (SSD).

The pandemic has disproportionately impacted students with special needs, especially those with intellectual and developmental disabilities, in part because they rely on daily structure and in-person support for learning and social growth. The researchers also will assess educational disparities affecting families whose children have intellectual, emotional and developmental disabilities. Due to underlying medical conditions experienced by many such students, this population of students is at a higher risk for developing COVID-19 and severe complications of the virus.

The grant will serve about 750 families in the district who have children in kindergarten through the 12th grade. The saliva tests will be voluntary and offered weekly to teachers, staff and students over the next year, starting this fall.

The funding stems from $500 million awarded by the National Institutes of Health (NIH) to 32 medical centers as part of the agency’s Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) initiative to provide underserved communities with rapid testing for COVID-19.
“The widespread closure of schools has significantly impacted the well-being of children in general and this population in particular,” said Jason Newland, MD, co-principal investigator of the grant and a professor of pediatrics in the Division of Pediatric Infectious Diseases. He has advised multiple school districts in Missouri on plans for reopening schools.

“It is a major priority to get children with disabilities back into the schools while providing a safe environment for the students and staff,” said Newland, who treats patients at St. Louis Children’s Hospital. “A key component of achieving this goal in this vulnerable population is ample testing that can rapidly detect COVID-19 infections within the school community.”

The saliva test provides easy and fast testing with same-day results, ideal for screening large communities. It was developed by the School of Medicine’s Department of Genetics and the McDonnell Genome Institute, in collaboration with a biotechnology company.

New Hampshire - State Has 5-Group Priority List for Coming COVID Vaccine
By Shawne K. Wickham, New Hampshire Union-Leader, November 14, 2020
More than 60,000 health-care workers, 15,000 residents of nursing homes and assisted-living facilities, and 13,000 first responders will be among the first Granite Staters to receive a COVID-19 vaccine, according to state plans.

Last week, two companies, Pfizer and Moderna, announced promising results from ongoing vaccine trials. With COVID-19 cases sharply rising across the country, states are getting ready to distribute the vaccines as soon as they are available.

New Hampshire officials say the first vaccines could arrive as soon as next month. The Department of Health and Human Services’ Coronavirus Disease 2019 Vaccination Plan outlines a phased approach to distributing vaccines to state residents, with the most vulnerable and those who care for them at the top of the list. A draft of the 40-page document is available on the DHHS website.

Once COVID-19 vaccines are available to the general public, most people will get them from their health-care providers or local pharmacies,
according to Elizabeth Daly, chief of the infectious disease control bureau at DHHS, who is overseeing vaccination preparations for the agency. The vaccines are expected to be available at no cost.

Daly said Pfizer expects to seek Emergency Use Authorization for its vaccine in the next week or so, and it will likely take another couple of weeks for the Food and Drug Administration to give its approval.

“The timeline we’ve been working with is early December,” Daly said. “It could all happen faster. There’s a will to get this stuff out to the public.”

DHHS plans to set up vaccination sites through the state’s 13 Regional Public Health Networks, with those sites providing around 100 vaccinations an hour.

Ohio - Pandemic Presents Challenges for Organizations Caring for Individuals with Intellectual and Developmental Disabilities
By Chris M Worrell, Cleveland com,
November 15, 2020
The COVID-19 pandemic has created challenges for various organizations and businesses throughout Northeast Ohio. But few have received less attention than those that provide services for persons with intellectual and developmental disabilities.

Even prior to the pandemic, providers nationwide struggled to retain qualified direct-support professionals (DSPs) -- the frontline workers who interact with individuals with intellectual and developmental disabilities.

DSPs are almost invariably skilled, dedicated individuals who deal with personal, hygienic and behavioral issues that would send most of us running. They are also generally underpaid.
Although many DSPs long resisted better-paying jobs in retail settings and other industries, COVID-19 provided further incentive for them to make a career change.
Providers of services to those with developmental disabilities are facing a number of other issues, as well. Day programs closed in March as the pandemic first took hold. Although the programs have returned, social distancing and various other requirements, as well as fears surrounding COVID-19, have limited participation.

Group homes for those who have disabilities -- like nursing homes and long-term care units -- were closed to visitors under state orders beginning in the spring. The residential facilities have since reopened for visitation, with some restrictions, though the recent spike in coronavirus cases and the upcoming holiday season combine to present another dilemma for providers, as increased interactions between clients and family members seem inevitable.

VOR's Fall Membership & Fundraising Campaign!

It is the season of giving. We give thanks, we give gifts, we give or ourselves.

Won't you help us to provide our gift to those who need it most?

There are many ways to give.
Click on the links below for details.

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


H.R. 6045 & S. 3669 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.

H.R. 5443 & S. 3220 - Ensuring Access to Direct Support Professionals Act -
To amend title XIX of the Social Security Act to clarify that the provision of home and community-based services is not prohibited in an acute care hospital, and for other purposes.

H.R. 2417 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).


H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care". In addition to the inherent bias against ICF's and people with severe and profound I/DD, the bill is prohibitively costly and there are not enough Direct Support Professionals to meet the provisions of this act.

H.R. 582 & S. 150 - The Raise the Wage Act - This bill is aimed at raising the minimum wage, but it also has provisions to eliminate 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. 873 & S. 260 - The Transformation To Competitive Employment Act - This bill has declared the goal of eliminating Sheltered Workshops and 14(c) Wage Certificates, under the mantle of everyone with a disability is capable of competitive integrated employment.
Sponsors of the bill recently added a new summary that significantly downplays the effect the bill would have on eliminating work centers and 14(c) that benefit those who are unable to compete in the employment opportunities the bill promotes.


VOR is concerned about the following bills because they only cover HCBS proivders, and because the sponsors of the bills have consistently fought against ICFs as part of the continuum of care in I/DD services.

H,R. 6305 & S. 3544 - Coronavirus Relief for Seniors and People with Disabilities Act of 2020 - Bill provides FY2020 supplemental appropriations to the Centers for Medicare & Medicaid Services for specified quality improvement and laboratory certification activities. The funds are designated as an emergency requirement, which exempts the funds from discretionary spending limits and other budget enforcement rules.
In addition, the bill (1) temporarily requires state Medicaid programs to provide Medicare cost-sharing assistance to certain individuals who qualify for, or are enrolled in, the low-income subsidy program under the Medicare prescription drug benefit; and (2) authorizes a grant program to support Medicaid home- and community-based services during the public health emergency.


During the COVID-19 Pandemic, Health Care Providers have been relying increasingly on Telehealth Services. Members of Congress have proposed a number of bills to learn more about telehealth services, with a possible eye toward expanding these services into our broader system of health care.

VOR has been following the expansion of telehealth, especially how incorporating these services into treatment of people with I/DD might change our delivery systems. Telehealth has the potential to improve care for some people with poor access to professional care, or it could be used as a less-expensive substitute for in-person treatment and quality professional care.

Current Telehealth bills in the 116th Congress include:

H.R. 6474 - Healthcare Broadband Expansion During COVID-19 Act - To provide for the expansion of the Rural Health Care Program of the Federal Communications Commission in response to COVID–19, and for other purposes.

H.R. 7078 - To study the effects of changes to telehealth under the Medicare and Medicaid programs during the COVID-19 emergency.

S. 3999 - A bill to amend title XVIII of the Social Security Act to simplify payments for telehealth services furnished by Federally qualified health centers or rural health clinics under the Medicare program, and for other purposes.

S. 3999 - A bill to amend title XVIII of the Social Security Act to ensure access to mental health and behavioral health services furnished through telehealth under the Medicare program.

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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