May 8, 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
National News:
Coronavirus Crisis Exacts Toll on People with Disabilities
By Lindsay Whitehurst, Associated Press via CT Post, May 6, 2020
Even before the coronavirus hit, cystic fibrosis meant a cold could put Jacob Hansen in the hospital for weeks. He relies on hand sanitizer and disinfecting wipes to stay healthy because he also has cerebral palsy and can't easily wash his hands from his wheelchair, but these days shelves are often bare.For millions of disabled people and their families, the coronavirus crisis has piled on new difficulties and ramped up those that already existed. Many are immunocompromised and therefore more vulnerable to infection, but terrified of new coronavirus-era hospital guidelines they fear could put them at risk.

The leader of the U.N. said Wednesday the 1 billion people living with disabilities around the world have been among the hardest-hit by the virus. Secretary-General Antonio Guterres called for them to have equal access to prevention and treatment of COVID-19 as the pandemic exposes and intensified global inequalities.

In the U.S., a number of states are moving toward reopening businesses shuttered by the virus, but many people with disabilities are staying behind closed doors, worried that more interaction could lead to a wave of new infections.

“It’s honestly kind of scary, with my disability even the common sniffles could put me in the hospital,” said Hansen, who usually likes volunteering at the library and rubbing shoulders with superheros at Comic-Con.

Hansen, 20, has done well with a new medication and was ready to start a grocery-store job near his Utah home before the virus hit, but the infection risk has put a stop to that for now. He used to have help from health-care workers with things like eating and bathing, but they had to stop coming after one had a potential exposure.
The coronavirus test turned out to be negative, but they decided the risk was too high. Now Jodi Hansen does most of those things for her son, bringing drinks, scratching itches and bathing him, even though she has a bad shoulder and is working 40 hours a week from home as a transition coordinator for the Utah Parent Center.

“I’ve definitely had one full panic attack,” said Jodi Hansen. “I look at my eyes in the morning. I’ve got bad undereye circles. I just don’t sleep well at all.”
Oklahoma mom Lisa DeBolt felt like she had to make a similar decision in caring for her son Chandler, who also has cerebral palsy. While her husband works in facilities management for a church, she’s helping with things like medication, hygiene and a feeding pump.

“We just have such a small little family to rely on right now,” she said.

Both moms worry not only about how the virus might affect their sons but how a hospital stay might unfold.

They live in states where advocates say people with disabilities may end up at the back of the line for scarce resources like ventilators if hospitals become overwhelmed. Advocacy groups have filed complaints in several states, including Kansas, Tennessee, Washington state and Oklahoma over government guidelines they say wrongly disadvantage people with disabilities.

COVID-19: States Protect Long-Term Care Facilities from Liability
By C. Frederick Geilfuss II, , Lawrence W. Vernaglia, Olivia R. King, National Law Review, May 1, 2020

COVID-19 has hit long-term care facilities very hard. Every day brings reports of lethal outbreaks in such facilities and one-quarter or more of the reported COVID-19 related deaths in the United States have been connected to long-term care facilities.

Given what is known about the Coronavirus, perhaps that result should not be surprising. Long-term care facilities have many elderly residents living in close proximity to each other and a good number of residents have co-morbidities, behavioral health or cognitive impairments, or other health risk factors that make them particularly vulnerable to both infection and developing serious morbidity or mortality from the virus. The virus has not discriminated amongst facilities and has caused serious issues in facilities that have had a history of high quality care with limited reported deficiencies as well as facilities that have experienced survey issues. Public and private operated facilities have been affected, as have those serving predominantly well-off and less well-off populations.

The potential for lawsuits and liability for long-term care facilities is always present; challenges at securing adequate insurance coverage has been a real concern to the industry for decades, particularly in states with aggressive plaintiffs’ bars, like Florida. Even before the height of the pandemic,
the Department of Justice had indicated that skilled nursing facilities will be a target area under the False Claims Act in 2020, and announced a renewed focus on the quality of care provided in such facilities. The COVID-19 era brings a host of new challenges and increasing risks to patients and provides alike.

Immunity for COVID-19 activities has received attention from Federal lawmakers. As described previously, the Federal Public Readiness and Emergency Preparedness Act put in place some protections, and the CARES Act limits state and federal liability for volunteer health care professionals.  
A number of states have considered and some have enacted immunity protections for health care providers, including long-term care facilities. However, with all grants of immunity, these waivers protect providers by removing the rights of residents and their families to obtain redress for certain occurrences, and patient advocates have voiced concern that immunity may shield negligent actors from rightful discipline. Moreover, some patient advocates argue that immunity may remove the incentive for long-term care facilities to take preventative measures, including employee testing and ensuring sufficient supply of personal protective equipment. Nevertheless, while there may be challenges to the effectiveness of waivers that eliminate causes of action, liability waivers have been a way to recognize the challenges presented to such facilities by COVID-19, including shortages of health care staff and equipment, and waivers encourage such facilities to continue providing services in circumstances where problems are difficult to avoid.   

At least six states have enacted liability waivers applicable to long-term care facilities and the conditions of immunity are largely similar. 

Hospital No-Visitor Policies Endanger People With Disabilities, Advocates Say
By Michelle Diament, Disability Scoop, May 8, 2020
Disability advocates are alarmed that no-visitor policies are forcing people with developmental disabilities — including those who are nonverbal — to go it alone at hospitals across the nation.

Hospitals are sharply limiting access to their facilities in an effort to slow the spread of COVID-19. And in many cases, there are no policies in place to ensure an exception for individuals with disabilities who require assistance.

“We are aware of only seven states or state hospital associations that have issued statewide guidance or policies that explicitly make clear that people with disabilities have the right to be accompanied by a disability support person if that is necessary for them to communicate effectively or to otherwise ensure they are able to adequately access and benefit from the medical treatment that is offered to patients without underlying/preexisting disabilities,” said Tauna Szymanski, executive director and legal director at Communications First, a national advocacy group focused on communication disabilities.

Szymanski’s group along with Disability Rights Connecticut, the Center for Public Representation
and The Arc filed a complaint this week with the U.S. Department of Health and Human Services’ Office for Civil Rights alleging that recent guidance from the state of Connecticut violates the Americans with Disabilities Act and other laws. The recently-issued state guidance said that a support person should be allowed to accompany people with intellectual and developmental disabilities who receive services from the state’s Department of Developmental Services, but did not extend the same accommodation to others with similar needs who are not supported by the state agency.

The Connecticut complaint is the first to be filed with HHS’ Office for Civil Rights since the coronavirus pandemic began related to hospital visitor policies, advocates said. It is one of several efforts underway to ensure accommodations for those with disabilities who require hospitalization for COVID-19 or otherwise.

Disability Service Providers Struggling To Stay Afloat Amid COVID-19
By Michelle Diament, Disability Scoop, May 4, 2020
Service providers nationwide are contending with lost revenues, higher costs and new challenges as they work to support people with intellectual and developmental disabilities.

A survey of 689 provider organizations across the country finds that 68 percent have been forced to close one or more of their offerings due to government shelter-in-place orders in response to the coronavirus pandemic. The closures account for an average of 32 percent of annual revenue.

Meanwhile, the groups are dealing with escalating costs for overtime, hiring additional employees and shifting away from in-person staff training.

All told, the changes stemming from COVID-19 represent 40 percent of the providers’ annual revenue, on average.

The findings come from an April survey conducted by the American Network of Community Options and Resources, or ANCOR, a national trade group representing disability service providers. The data
was analyzed by Avalere, a Washington-based health care consulting firm.

“It’s staggering,” said Gabrielle Sedor, chief operations officer at ANCOR, of the results, which the group released late last week. “What the survey is showing us is that providers really are on the brink and they’re in dire need of fiscal relief.”

More than half of providers surveyed said they only have enough cash on hand to continue providing services for another five or six weeks, Sedor noted. While most continue to be paid for at least some services, she said they’re strained.

“I don’t think I’m aware of anyone who has closed their doors yet, but some providers are close,” Sedor said.

States Cut Medicaid as Millions of Jobless Workers Look to Safety Net
By Rachel Roubein and Dan Goldberg, Politico, May 5, 2020

States facing sudden drops in tax revenue amid the pandemic are announcing deep cuts to their Medicaid programs just as millions of newly jobless Americans are surging onto the rolls.

And state officials are worried that they’ll have to slash benefits for patients and payments to health providers in the safety net insurance program for the poor unless they get more federal aid.
State Medicaid programs in the previous economic crisis cut everything from dental services to podiatry care — and reduced payments to hospitals and doctors in order to balance out spending on other needs like roads, schools and prisons. Medicaid officials warn the gutting could be far worse this time, because program enrollment has swelled in recent years largely because of Obamacare’s expansion.

The looming crisis facing Medicaid programs “is going to be the ’09 recession on steroids,” said Matt Salo, head of the National Association of Medicaid Directors. “It’s going to hit hard, and it’s going to hit fast.”

Medicaid programs, among the largest budget items in most states, provide health insurance to roughly 70 million poor adults, children, the disabled and pregnant women. The federal government on average pays roughly 60 percent of program costs, with poorer states receiving a higher share. States have the latitude to adjust benefits, payments to health care providers and eligibility requirements with oversight by the federal government.

State News:
New Jersey - COVID-19 Landed a High-Risk Teen in the Hospital for 26 Days. Her Parents Call Her Recovery a Miracle
By Amy Kuperinsky, NJ Advance Media, May 5, 2020
Double pneumonia. A compromised immune system. Diminished lung capacity.
And the coronavirus.

Jimmy Komninos didn’t want to think about what all that could mean for his 14-year-old daughter, Zoey. But he began to prepare himself for what seemed inevitable — planning a funeral.

Zoey, who has cerebral palsy and a seizure disorder, had been at Hackensack University Medical Center for days, having contracted COVID-19 after one of her home nurses was exposed to the disease.

She was on a ventilator, in a medically induced coma. Pediatric intensive care nurses turned her onto her stomach to help drain fluid from her lungs. Her 55-pound body lay prone, strewn with tubes and gauze and wires.
“Of all people, she should not have been able to survive this,” Jimmy says. "That’s the bottom line.”
Yet somehow, after nearly a month in the hospital, Zoey came home.
“It’s a miracle,” says her mother, Melanie Ollick Komninos. She was at Zoey’s side for every moment of her treatment, from March 19 to April 13.

“There’s no other word to describe it,” Jimmy says. “Nobody really knows what happened. All they know is her body recovered over time."

South Carolina - Coronavirus Outbreak Discovered at SC Facility That Treats Disabled Adults
By Emily Bohatch, The State, May 6, 2020
A state-run facility that houses some of South Carolina’s intellectually disabled residents has seen an outbreak of the coronavirus among its patients and staff, according to an S.C. Department of Disabilities and Special Needs spokesman.

The Pee Dee Regional Center, which is located in Florence, saw 43 positive COVID-19 patients by Friday, DDSN spokesman Robb McBurney said. Of those cases, 26 were staff and 17 were residents, and one of the residents have died.

The center houses adults that need constant care and assistance. It’s the only DDSN facility in which residents have tested positive for the coronavirus, McBurney said. Across the state, 28 DDSN staff have contracted the virus.

“In the past three weeks, Pee Dee Center has experienced a rise in positive cases as the Pee Dee area has had a rise in reported cases according to DHEC statistics,” McBurney said.
Florence County itself has been a hotspot for coronavirus cases, with 336 positive cases and 16 deaths as of Sunday. Florence County has the second highest per capita rate of infection in the state, according to data from the S.C. Department of Health and Environmental Control.

Residents at the Pee Dee Regional Center began testing positive about three weeks ago, days after several staff members tested positive, McBurney said.

Residents at the facility are part of a “vulnerable population,” McBurney said, and “any illness such as COVID-19 needs to be treated as a serious condition. Seven of the residents have been hospitalized throughout the outbreak," McBurney said.

He added that most residents who contracted the virus have recovered or are on the road to recovery.

Massachusetts - Baker Administration Appears to Place Low Priority on COVID-19 Threat to the Developmentally Disabled
By Dave Kassel, The COFAR Blog, May 4, 2020

Although the pace of mobile testing for COVID-19 of residents in group homes funded by the Department of Developmental Services (DDS) appears to be picking up, the testing of staff in those facilities is reportedly haphazard.

That is because it remains voluntary for staff in DDS-funded group homes to be tested even as the Baker administration has moved to make testing of staff in nursing homes mandatory.
This is one of a number of signs that the administration is treating people with intellectual and other developmental disabilities differently than it treats the elderly and other vulnerable populations. The administration, in fact, appears to be placing a lower priority on protecting people with intellectual and other developmental disabilities from COVID-19 than it places on other populations.

We have raised repeated concerns that:

  • COVID-19 testing is not mandatory for staff in DDS-funded group homes, and there are currently no efforts underway to retest either residents or staff in the group homes on a periodic basis.
Opinion:
Thirty Years After ADA’s Passage, the Disabled Still Face Medical Discrimination
By Noah McCourt, MinnPost, May 5, 2020
On July 26 of this year we will be celebrating the 30th anniversary of the Americans With Disabilities Act. Despite three decades of improvements on issues pertaining to the rights of persons with disabilities, they continue to face persistent and ongoing discrimination in health care settings.

While the ADA does provide some level of regulation, it has historically been difficult to enforce federal civil rights law in health care related industries, in part due to the lack of technical medical knowledge of individuals and their families. As a result, people with intellectual and developmental disabilities often face little recourse when they experience discrimination in the medical decision-making process.

For example, data suggest that discrimination against people with disabilities in the organ procurement and transplantation process continues to be a persistent problem. A 2008 survey of transplant centers conducted by researchers at Stanford University found that despite the fact that there was little data to support the idea that it would result in poorer health outcomes, 85% of pediatric transplant centers consider neurodevelopmental status as a factor in their determinations of transplant eligibility. In fact, there are more than 50 published cases of kidney transplants for people with intellectual disabilities in which the success rates and medical adherence rates are comparable to that of the general population.

Concerns regarding bias against persons with disabilities have intensified as health care professionals scramble to halt the spread of the COVID-19 virus. In response to a complaint filed by a coalition of disability advocacy organizations, the Office of Civil Rights in the U.S. Department of Health and Human Services issued a statement last month warning medical providers that “Persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities.”

Despite this clarification, many states adopted policies that are contrary to this determination. In Alabama, public health officials directed medical providers to “not offer mechanical ventilator support to COVID-19 patients with severe or profound mental retardation” and “traumatic brain injuries.” The state of Washington’s policy encourages doctors to consider a patient’s “Basic Functional status.” Concerns have also been raised regarding the policy issued by the Minnesota Department of Health, which interestingly is based on assessments regarding organ functioning.

Letter to the Editor: Direct Support Professionals Deserve Higher Pay
MJN Online, May 4, 2020
In the state of Georgia, the caregivers who work directly with people with intellectual and/or developmental disabilities (I/DD) make on average $10.07 per hour. These essential staff, known as direct support professionals (DSPs), provide support day in and day out to assist individuals with I/DD in all aspects of daily life, including an array of basic needs that many of us take for granted.

However, despite the vital role of a DSP, employees working at McDonald’s or delivering packages for Amazon make more money than DSPs. These are the same workers who are on the front lines still caring for people with I/DD amidst the coronavirus (COVID-19) pandemic.

During this COVID-19 pandemic, DSPs are going above and beyond their usual roles and responsibilities to care for some of the most vulnerable population. They are putting their health and lives on the line, caring for those who would otherwise become hospitalized without their support.

Like other essential healthcare professionals, DSPs do not get the choice to stay home and practice social distancing. More importantly, DSPs are being left out of the narrative when it comes to discussing front line workers facing COVID-19.
This caring force of committed employees are risking their lives not just because individuals with I/DD depend on them, but because these essential caregivers do not have the financial capacity to choose not to work.

The Americans with Disabilities Act (ADA) requires that individuals with disabilities receive services in the most integrated community setting appropriate to their needs, instead of institutions. **
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** VOR would disagree with this interpretation of ADA.. In its ruing in Olmstead, the US Supreme Court determined that in some cases, that setting may be an "institution".
The government, people with disabilities, families and our communities expect from providers a comprehensive model of care, which ensures health, safety and support to attain personal quality of life. Without a stable and adequately compensated workforce, this becomes increasingly difficult to accomplish.

While this group of caregivers is often forgotten, the DSPs have not forgotten the importance of their jobs and the numerous lives at stake. DSPs are still caring for individuals with I/DD and knowingly entering homes where people may have tested positive for COVID-19, often without adequate personal protection equipment (PPE).

Furthermore, caregivers are aware they could easily make twice as much money on unemployment and remove themselves from a possible life or death health situation. They are not though - they care too much about the individuals they serve. These caregivers, who are nothing short of heroes, are continuing to work during the pandemic often under-protected and underpaid.

Georgia is ranked 40th of the 50 states nationwide for the lowest DSP salaries. Consequently, the turnover rate is 39.1%. Even before COVID-19 became a widespread pandemic, these DSP caregivers were severely underpaid and overworked. Despite being the cornerstone of the nation’s long-term care system, services for individuals with I/DD and the DSPs who care for them are historically underfunded.

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]
Another Way To Donate
Over the years, VOR members have suggested that donations be made in memory of loved ones with I/DD or their family members, or to honor a member of their community who have helped in the struggle to support services for people with I/DD.

If you are interested in setting up a memorial or a tribute, please use the form on our website. This will ensure that both the donor and person setting up the donations will be notified accordingly.
VOR Bill Watch:
Click on blue link to view information about the bill

VOR OPPOSES:

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. 1342 & S. 548 The Empower Care Act - A Bill to reauthorize Money Follows the Person extension through FY 2023 .


VOR SUPPORTS:

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. 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. 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. 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.)
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