May 29, 2020
VOR Weekly News Update 
VOR is a national organization that advocates for high quality care and human rights for 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 and YOU:
Write your Senators, and Members of the Senate Appropriations Subcommittee on Labor, HHS
"Please Uphold Residential Choice Under Olmstead!"

Last week, members of VOR's Legislative Committee submitted Testimony to the Senate Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies regarding the need to protect Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF or ICF/IID) as the Appropriations Committee negotiates continuing funding ot the Money Follows the Person Rebalancing Act (MFP) in its FY2021 Appropriations Bill.

This week, we sent out an Action Alert to our members, urging them to reach out to their Senators and members of the Appropriations Subcommittee, urging them to support our request to include language from previous bills that offered protections against closing ICFs.

If you haven't already sent this letter, we urge you to ACT NOW!

National News:
People With Intellectual And Developmental Disabilities More Likely To Die From Covid-19
By Marla Milling, Forbes, May 28, 2020
Syracuse University and SUNY Upstate Medical University researchers recently analyzed more than 30,000 people who tested positive for Covid-19 and found that those with intellectual and developmental disabilities (IDD) are more likely to die that those without IDD.

Breaking the data down by age group shows:

  • Ages 0-17 – for every 100 people with Covid-19, 1.6 with IDD died compared to less than one without IDD
  • Ages 18-74 – for every 100 people, 4.5 with IDD died; 2.7 without IDD
  • Ages 75 and over – for every 100 people, 21.1 with IDD died; 20.7 without IDD

“Based upon the case fatality rates we report among those ages 18-74, if 100,000 individuals with IDD contract Covid-19—which is entirely possible in light of the estimates of the size of this population and the cumulative incidence rates we are seeing in our research—we would expect 4,500 to die,” says Scott Landes, associate professor of sociology at Syracuse University.
“Comparatively,” he adds, “among 100,000 individuals without IDD, we would expect 2,700 to die. That would be an excess of 1,800 IDD deaths and in my mind that is unacceptable.”

While the study did not investigate cause, the researchers noted that people with IDD had a higher prevalence of comorbid circulatory, respiratory and endocrine disease across all age groups.

“More attention is needed to this vulnerable health population in order to ensure their safety and well-being during this pandemic, including careful attention to the impact of public policies such as PPE (personal protective equipment) prioritization and funding streams on the ability of residential service providers to guarantee quality of care during this time,” says Landes.

For Some People with Disabilities, Losing a Routine is What Hurts Most
By Otis R. Taylor Jr., San Francisco Chronicle, May 29, 2020
Thomas Beier misses his friends.

Every day, the 22-year-old asks his mother, Cathy Beier, to drive to Las Trampas, the developmental care facility in Lafayette where Thomas spent most of his days before the coronavirus shut down the state.

It’s part of their new daily routine. Sometimes she takes him there so he can say hello to the administrators still working.

We’ve all seen our routines zapped by the coronavirus, but what’s it been like for people whose routines matter more than most? The isolation and loneliness we’re experiencing is intensely different for adults with disabilities such as Down syndrome and autism. Mapping and keeping a routine is essential for the development of social and life skills.

“There’s a million aspects of having a social life that we all take for granted because, if anything, we have too much of them,” Cathy Beier said. “But for Thomas, Las Trampas is what provided that.”
There are more than 350,000 Californians with intellectual or developmental disabilities, according to the California Department of Developmental Services. About 22,000 live in Alameda and Contra Costa counties, according to the Regional Center of the East Bay, which works with agencies to plan and coordinate services in both counties.

“This has been a huge disruption to their routine,” he said. “For people with developmental disabilities, especially autism, routine is so highly important.

“That routine of getting up every morning, getting ready, getting dressed and getting on to the bus, coming to day program, visiting with your friends, learning and then going back home has been totally disrupted.”

Coronavirus Threatens Autistic People Living in Group Homes
By Marcus A. Banks, Jaclyn Jeffrey-Wilensky, Spectrum News, May 21, 2020

“Gray skies are gonna clear up,” Susan Epstein sings into the phone.

“Put on a happy face,” sings her daughter, miles away in a group home for adults with intellectual disability.

The two have not been in the same room in more than two months, ever since the coronavirus pandemic shut the group home to visitors in March. Singing together is one of the few ways that Epstein’s daughter, who is minimally verbal but knows the words to dozens of songs, can connect with her mother during the lockdown.

Many autistic people living in group homes are having to forgo visits with family and therapists — with good reason. Like nursing homes and cruise ships, group homes are particularly vulnerable to outbreaks of disease.

People with autism or intellectually disability may be at greater risk for infection than the general population, no matter where they live. Many have underlying health conditions and may have trouble with hand hygiene and other preventive measures, experts say.

In a group home, the risks may be even higher. Residents share common areas and sometimes bedrooms, making it difficult for sick or exposed residents to self-isolate. Many also need help with bathing, dressing and eating, putting them in close physical contact with staff.

“Direct support work is up close and personal,” says Peter Berns, chief executive officer of The Arc, a nonprofit disability advocacy organization in Washington, D.C., whose local chapters run group homes and day programs. “It’s not done at a distance of 6 feet or more.”

Support staff often rotate among group homes, which makes them especially vulnerable to contracting — and spreading — the coronavirus. As workers fall ill and homebound residents need more care, administrators say they are having trouble keeping homes fully staffed and stocked with food and protective equipment.

State News:
Illinois - Department of Public Health Files Emergency Rules Mandating COVID-19 Testing in Long-Term Care Facilities
Press Release, Illinois Dept. of Public Health, May 28, 2020

Today, the Illinois Department of Public Health (IDPH) filed emergency rules mandating long-term care facilities comply with infection control practices, including testing all residents and staff for COVID-19.

Each facility will be required to develop and implement a testing plan to better protect vulnerable residents and ensure no facility is shirking its responsibilities for those in their care.“Nursing home residents are at higher risk for infection, serious illness, and death from COVID-19,” said IDPH Director Dr. Ngozi Ezike. “Testing residents and health care staff is important to help keep COVID-19 out of facilities if the virus is not there, detect cases quickly – especially among individuals who are asymptomatic, and stop transmission. While many facilities are working with IDPH and their local health departments to help keep residents safe, we cannot rely on voluntary compliance alone, and this additional regulatory authority will help ensure swift action.”

IDPH is requiring every long-term care facility in Illinois to test all residents and staff for COVID-19 as recommended by the Centers for Medicare and Medicaid Services and the Centers for Disease Control and Prevention. Each facility will collect specimens and arrange with a laboratory to have them tested. IDPH will provide training and assistance with testing if needed and will help identify laboratory services if requested. Each facility will be required to report to public health officials the number of residents and staff tested, and the number of positive, negative, and indeterminate test results.

The facility must also make sure a copy of the facility’s infection control policies and procedures is provided to residents, and to the resident’s family or representative, along with IDPH or local health departments, upon request.

To date, IDPH laboratories have provided 45,000 testing kits to 170 long term care facilities. IDPH has an agreement with Quest Laboratories, which has so far provided 8,500 testing kits to 33 long term care facilities. IDPH will provide additional testing kits to long-term care facilities that choose to work with IDPH to implement their testing plan.

Ohio - Visitation at Assisted Living Facilities and Intermediate Care Facilities Starts June 8
By Danielle Malagarie, Dayton 24/7 Now, May 28, 2020
Governor Mike DeWine says outdoor visitations at assisted living facilities and intermediate care facilities can start June 8, but this does not include nursing homes.

On Thursday, those new guidelines were released.

Dewine said now that testing starts Monday, on June 8 outdoor visitations will be allowed at assisted living facilities and intermediate care facilities who care for those with developmental disabilities.

DeWine said because each facility is different, each can come up with how to best implement outdoor visitations.
But all must:

  • Screen for temperatures and symptom-reporting for visitors
  • Schedule hours and time limits for visits
  • Proper social distancing measures
  • Face coverings
  • Resident, family, and friend education about the risks of the spread of COVID-19

The Ohio Health Care Association and others helped develop these guidelines.

Texas - HHSC to Expand COVID-19 Testing to All Texas Hospitals, State Supported Living Centers
By Matthew Quick, KDFW-4 TV, May 21, 2020

On May 21, Governor Greg Abbott directed the Texas Health and Human Services Commission (HHSC) to expand COVID-19 coronavirus testing to all patients, residents, and staff of the 23 state-operated inpatient psychiatric hospitals and living centers throughout Texas.

HHSC currently operates 13 state-supported living centers (SSLCs) that provide 24-hour residential care, medical services, and vocational training to people with intellectual and developmental disabilities. HHSC also operates 10 state hospitals that provide acute inpatient psychiatric care for adults, children, and adolescents.

“Many patients and residents in our care are medically fragile and rely on our frontline healthcare heroes for the important care they receive. By expanding testing to everyone in our facilities, we will increase our ability to further protect everyone who lives and works in our facilities and prevent the spread of the virus throughout our system,” said HHS Executive Commissioner Phil Wilson.

HHSC is currently working with the Texas Department of State Health Services to expand testing to the 4,700 patients and all 18,000 employees at the state-run facilities. According to the governor's office, testing kits are already on the way to the facilities as several local health departments around Texas offer their assistance to help.

"By expanding widespread COVID-19 testing to our state hospitals and state-supported living centers, we are better equipped to identify and mitigate these potential hot spots and protect our most vulnerable populations," said Abbott. "I thank HHSC for their ongoing partnership to provide more testing at these facilities across the state."

The expanded testing is also meant to further assess the scope and extent of the spread of the virus in state facilities. Residents and patients were only previously tested if they displayed symptoms of the virus or had possible exposure. As of May 20, a total of 161 patients and residents have tested positive for COVID-19 and the state says less than 10 residents and/or patients have died.

Texas - State Representatives Request COVID-19 Testing for Group Homes in Texas
By Maggie Glynn, KXAN TV-4, May 26, 2020

State representatives are asking Governor Greg Abbott to include community group homes in his mandate for more COVID-19 testing.Governor Abbott originally ordered testing at all nursing homes across the state earlier this month, and recently expanded that to include state-supported living centers and state hospitals.

However, that does not include the 30,000 Texans living at community group homes with special needs, State Rep. James Talarico explained.

Rep. Talarico sent a letter to the Governor weeks ago, with bipartisan support from 62 other state representatives, asking for the expansion of testing and funding for group-style living facilities.

“We asked for three simple things,” Rep. Talarico explained. “One is immediate emergency funding to ensure that we can provide hazard pay to frontline health care workers, and personal protective equipment in those facilities. Second was universal testing to ensure that every patient, every worker in these facilities gets tested frequently to ensure we prevent outbreaks before they occur.”

“Then the last, after we ensure we provide funding and provide testing is ensuring that we report transparently where these cases and deaths are occurring across the state,” Rep. Talarico added.
While the Governor granted that to state-run living centers and state hospitals, Rep. Talarico said the focus is now on group homes.

“They are kind of packed in tightly together in these types of facilities. And so this is where outbreaks are occurring, and where they will continue to occur unless we take immediate and robust action to prevent outbreak,” Rep. Talarico said.

Hospital Visitor Bans Fail Disabled Patients, Complaint Says
By Kathleen Megan, CT Mirror, May 27, 2020
It’s been weeks since Penny Barsch’s son was wheeled, screaming, down a hospital corridor while she watched from an iPad, and the memory still haunts her.

Her son Shane Sessa, 48, who is intellectually disabled, needed emergency surgery at Middlesex Hospital. Medical staff had called her on the iPad to get consent for the surgery. But she wasn’t allowed to be with Sessa in person because coronavirus has led to hospitals banning visitors.
“Psychologically, it’s really done a number on me,” said Barsch, of Meriden. “It makes me feel like I broke a promise to my son to be there to protect him. That’s what he expects of me. A lot of people don’t understand his voice, so he depends on me to be his voice.”

She’s certain that if the hospital had allowed her in to visit her son last month, she would have been able to calm him before the surgery and would have helped him afterward when he was consumed with fear and needed to be tied down so as not to pull out a tube. He never needed that kind of restraint in the past, she said.

Sessa is one of three people with disabilities named in a complaint filed earlier this month with the Office for Civil Rights in the U.S. Department of Health and Human Services.
The complaint argues that Connecticut has failed to ensure that people with disabilities who are hospitalized receive reasonable accommodations during the COVID-19 public health emergency.

The organization that filed the complaint – Disability Rights Connecticut – said that people with disabilities are not being permitted “necessary exemptions to strict ‘no visitor’ policies adopted by hospitals due to the pandemic.”

As a result, people with disabilities are being denied equal access to medical treatment, the complaint says, because they are denied “effective communication” and the right to provide “informed consent,” leading to “substantial and lasting emotional harm.” Some people with disabilities have unnecessarily been restrained, the complaint says, either by being tied down or sedated. Had a support person or relative been present to calm the patient, advocates and families say, no restraints would likely have been necessary.

Canada - $1.1M Respite Funding for Caregivers of People with Intellectual Disabilities in Saskatchewan
By Thomas Piller, Global News, May 28, 2020

The Saskatchewan government says additional respite funding for caregivers of people with intellectual disabilities will help fill gaps created by the novel coronavirus pandemic.

Over $1.1 million was announced on Thursday, according to a press release.

Many respite options, including summer camps, have been closed during the pandemic.

Government officials said this funding allows caregivers to access broader respite options that work in a person-centred or family-focused way during the current situation.

From June to September, this benefit provides $100 per month to pay for respite or respite activities.

“Caregivers are doing tremendous work providing care and support to people with intellectual disabilities during this pandemic — often 24 hours a day, seven days a week,” said Social Services Minister Paul Merriman in a press release.

“With increased pressures during this time, they need a break to be able to maintain their supports. This benefit will help with that during the next four months.”

Approximately 2,800 caregivers will be eligible for these pandemic respite payments, officials said.
Earlier this week, the government proclaimed May 25-29 Disability Service Professionals Week, which celebrates the work that people across Saskatchewan do to provide support to people with disabilities.


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


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.


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. 1379 & S. 560 - Ensuring Lasting Smiles Act - To require that group and individual health insurance coverage and group health plans provide coverage for treatment of a congenital anomaly or birth defect. (i.e. Cleft palate, ectodermal dysplasia, etc.)
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
If you would like to receive VOR's Action Alerts, General Announcements, or information about your membership but not receive the Weekly Newsletter, please select "Update Profile" below.

If you select "Unsubscribe" you will be removed from all of these lists.