August 21, 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, COVID-19, & You:
Below are several resources for VOR members regarding the COVID-19 Pandemic. As always, we ask that you read this with a critical eye, to determine if the information within is consistent with other reports that you have read or with your own personal experience.
Seven Months Later, What We Know About Covid-19 — and the Pressing Questions that Remain
By Andrew Joseph, Helen Branswell, and Elizabeth Cooney, STAT, August 17, 2020
The “before times” seem like a decade ago, don’t they? Those carefree days when hugging friends and shaking hands wasn’t verboten, when we didn’t have to reach for a mask before leaving our homes, or forage for supplies of hand sanitizer.

Oh, for the days when social distancing wasn’t part of our vernacular.In reality, though, it’sonly been about seven months since the world learned a new and dangerous coronavirus was in our midst. In the time since Chinese scientists confirmed the rapidly spreading disease in Wuhan was caused by a new coronavirus and posted its genetic sequence on line, an extraordinary amount has been learned about the virus, SARS-CoV-2, the disease it causes, Covid-19, and how they affect us.Here are some of the things we have learned, and some of the pressing questions we still need answered.
  • Covid and kids: It’s complicated
  • There are safer settings, and more dangerous settings
  • People can test positive for a long time after they recover. It doesn’t matter
  • After the storm, there are often lingering effects
  • 'Long-haulers’ don’t feel like they’ve recovered
  • Vaccine development can be accelerated.
  • People without symptoms can spread the virus
  • People seem to be protected from reinfection, but for how long?
  • How much virus does it take to get infected?
  • How many people have been infected?
  • It’s not clear why some people get really sick, and some don’t

PPE Shortage Could Last Years Without Strategic Plan, Experts Warn
By Jessica Glenza, The Guardian / Kaiser Health News, August 17, 2020
Shortages of personal protective equipment and medical supplies could persist for years without strategic government intervention, officials from health care and manufacturing industries have predicted.

Officials said logistical challenges continue seven months after the coronavirus reached the United States, as the flu season approaches and as some state emergency management agencies prepare for a fall surge in COVID-19 cases.

Although the disarray is not as widespread as it was this spring, hospitals said rolling shortages of supplies range from specialized beds to disposable isolation gowns to thermometers.

“A few weeks ago, we were having a very difficult time getting the sanitary wipes. You just couldn’t get them,” said Dr. Bernard Klein, chief executive of Providence Holy Cross Medical Center in Mission Hills, California, near Los Angeles. “We actually had to manufacture our own.”

This same dynamic has played out across a number of critical supplies in his hospital. First masks, then isolation gowns and now a specialized bed that allows nurses to turn COVID-19 patients onto their bellies — equipment that helps workers with what can otherwise be a six-person job.

“We’ve seen whole families come to our hospital with COVID, and several members hospitalized at the same time,” said Klein. “It’s very, very sad.”
Testing supplies ran short as the predominantly Latino community served by Providence Holy Cross was hit hard by COVID, and even as nearby hospitals could process 15-minute tests.

“If we had a more coordinated response with a partnership between the medical field, the government and the private industry, it would help improve the supply chain to the areas that need it most,” Klein said.

Klein said he expected to deal with equipment and supply shortages throughout 2021, especially as flu season approaches.

“Most people focus on those N95 respirators,” said Carmela Coyle, CEO of the California Hospital Association, an industry group that represents more than 400 hospitals across one of America’s hardest-hit states. “We have been challenged with shortages of isolation gowns, face shields, which you’re now starting to see in public places. Any one piece that’s in shortage or not available creates risk for patients and for health care workers,” said Coyle.

She said she believed COVID-19-related supply challenges will persist through 2022.

Black, Disabled, and Uncounted
By Daniel Young, National Health Law Program, August 7, 2020

Black people with disabilities are in a health equity crisis in the United States that is compounded by the COVID-19 pandemic — we just don’t know exactly how bad it is. Race and disability status expose Black people with disabilities to two separate sets of COVID-19 risks. Black people in this country exposed to COVID-19 have far higher case, hospitalization, and death rates as compared to their White counterparts.
Additionally, people with disabilities, often due to circumstances they cannot control, are more likely to be exposed to COVID-19 than people without disabilities. The failure to consistently track how Black people with disabilities are impacted by COVID-19 means the disparities at the intersection of disability, race, and COVID-19 are not identified or clearly understood.

This lack of data leaves much unknown about how Black people with disabilities are harmed by COVID-19. The most likely scenario is that Black people with disabilities are being exposed to COVID-19 at a much greater rate and with a higher death rate than people who are not Black and do not have a disability.

Data on Race & Disability, But Not the Intersection

Disability impacts one in four Black people in the United States. This is higher than the ratio for Whites, Hispanics, Native Hawaiians / Pacific islanders, and Asians. Only American Indian / Native Alaskans have a higher ratio of disability (three in ten) in their communities.

People with disabilities in the following groups are at a potentially higher risk of becoming infected:

  • People with limited mobility who rely on family members or direct support professionals increases the chances for contact with others who may be infected;
  • People who have trouble understanding information or practicing preventive measures, such as hand washing and social distancing; and
  • People who may not be able to communicate symptoms of illness.

People with disabilities who are in good health and can avoid exposure may have similar risk to getting COVID-19 than people without disabilities. However, large percentages of Black people with disabilities have the types of chronic, underlying health conditions like obesity and diabetes that make them particularly vulnerable to the effects of the disease. These chronic conditions can lead to cardiovascular and respiratory problems that make fighting off the virus very difficult.

Statistically, Black people are also more likely to live in areas that have fewer COVID-19 testing resources, and receive poorer care when able to access resources. Black people also disproportionately reside in settings where the risk of exposure to COVID-19 is at its highest. Two such settings—congregate care facilities and prisons—have been particularly hard hit by COVID-19.

American Association of Developmental Medicine and Dentistry: COVID-19 Support Guidelines for Individuals with IDD
People with IDD, have higher rates of complications and death due to Covid-19, when compared to the general population.

Despite this risk, public health recommendations for this population are sparse and vary greatly from state-to-state.

The AADMD believes there need to be clear guidelines applied nationally to reduce the impact of COVID-19 on individuals with IDD.
To address this urgent need, AADMD
developed the following white paper.

National News:
U.S. Senate Releases “Skinny” COVID-19 Relief Proposal
By Eryn Hurley, Rachel Merker, National Association of Counties, August 20, 2020
On August 18, Republicans in the U.S. Senate released draft proposal for a COVID-19 relief package, the Delivering Immediate Relief to America’s Families, Schools and Small Businesses Act. At $500 billion in direct federal spending and loans, the legislation represents a scaled-back, or “skinny,” version of the Republican Senators’ July 27 proposal, the Health, Economic Assistance, Liability Protections & Schools Act (HEALS Act). Although the bill has not been formally introduced, it signals the direction the Senate may take as they seek to reach a final COVID-19 relief deal in September.

The act contains no new state and local aid, U.S. Postal Service assistance, employer liability protections, and small business relief. The proposal would include $300 weekly enhanced unemployment benefits, an increase from the $200 that was included in the HEALS Act, but consistent with the amount of extended federal aid that President Trump directed in an executive memorandum earlier in August. These benefits would last through December 2020.

States Pressured To Remove Disability Bias From Medical Care Guidelines
By Shaun Heasley, Disability Scoop, August 21, 2020

In what’s being called a national precedent, yet another state is agreeing to change its approach to providing medical care during the pandemic in order to prevent disability discrimination.

The U.S Department of Health and Human Services’ Office for Civil Rights said Thursday that it has reached a resolution with the state of Utah to revise its crisis standards of care guidelines.

At issue is the state’s plan to ration care in the event that ventilators or other resources are in short supply, an issue that’s come to the fore amid the coronavirus pandemic. Disability advocacy groups have filed complaints against nearly a dozen states alleging that such plans discriminate against people with disabilities.

In the case of Utah, the state has altered its plan so that medical providers must conduct an individual assessment rather than making decisions based on age, disability or functional impairment. Language allowing a person’s long-term life expectancy to be factored has been removed and providers can no longer consider resource intensity or duration of need as criteria for a person to receive medical resources. In addition, under the updated policy, hospitals should not reallocate personal ventilators that people with disabilities have brought with them.

Most significantly, advocates noted that Utah will not allow blanket “do not resuscitate” policies if resources are scarce and the state is including protections to keep providers from steering people into decisions to withhold life-sustaining treatment.

State News:
New Jersey - In Response to COVID, NJ Moves to Pay Long-Term Care Workers More
By Lilo H. Stainton, NJ Spotlight, August 21, 2020
State would send $155 million in aid to nursing homes, but other health care workers won’t see raises.

Facilities that care for and house New Jerseyans with disabilities did not experience the same level of COVID-19 outbreaks witnessed at some nursing homes. Now advocates for the disabled community fear this will keep the state from including their workforce in its plan to increase wages for certain frontline health care workers.

“Where is the recognition for this group?” said Valerie Sellers, chair of the New Jersey Coalition for a DSP Living Wage, which advocates for the direct support professionals (DSPs) who work with individuals with intellectual and developmental disabilities. “We’ve got to rectify years of underfunding.”

Gov. Phil Murphy committed $155 million last week to assist New Jersey nursing homes, which have the highest coronavirus case rate per facility in the nation and account for half of the lab-confirmed COVID-19 deaths in the state. Of this funding, a mix of state and federal dollars — $78 million — is allocated to hike pay for certified nursing assistants, the frontline caregivers who bathe, dress, feed and help residents with other daily activities.
Frontline nursing home caregivers earn $15 hourly on average; officials estimate they would receive roughly $3 more with the funding allocated by Murphy and codified in the wage benefit bill, which requires the entire increase to go to workers. Additional money is set aside to help facilities pay for testing, cleaning and other coronavirus-related costs, but with a claw-back provision allowing the state to reclaim money if they don’t meet strict guidelines. “There’s an incentive for them to do the right thing,” Vitale said.

Sellers said direct support professionals earn closer to $12 or $13 hourly, although some have received temporary hazard pay, which will soon end. And while state officials approved higher Medicaid rates for home care services last year — boosting the reimbursement to $18 an hour — a portion goes to administrative costs and taxes, so personal care assistants, or PCAs, take home closer to $12 an hour, according to industry representatives. (PCAs are home care workers who care for the elderly in private residences, while DSPs work with individuals with disabilities in various settings.) New Jersey’s hourly minimum wage now stands at $11 and is set to increase to $15 by 2024 under a law Murphy signed last summer.

California - After 20 Years, Half Moon Bay ‘Intentional Community' Breaks Ground
By Fiona Kelliher, Mercury News, August 15, 2020
It was 1999 in Half Moon Bay, and the topic often came up among parents while sitting in the bleachers, watching their kids’ Special Olympics basketball games. Within a few years, many kids on the team would grow up to be adults with intellectual or developmental disabilities — but with few options in the Bay Area to live and work outside their parents’ homes.

“That is really the worst thing that claws at a parent’s mind,” recalled Jeff Peck, whose daughter was 11 at the time. “What is my child going to do after I die?”

More than 20 years later, those conversations have come to fruition — almost. As the Saturday morning heat rose, many of the same parents, kids and officials gathered on a parcel of land near the Half Moon Bay airport to celebrate the groundbreaking of a first-of-its-kind affordable housing community for people with disabilities in San Mateo County.
The finished project — built under Peck’s nonprofit Big Wave — will house 33 adults with disabilities, with the potential to expand. Commercial businesses, along with service provider One Step Beyond, will be built alongside the residential community to both subsidize the cost of the units and provide employment opportunities for residents.

Twenty-three of the spots are already accounted for, mostly to Half Moon Bay families who were part of the original discussions. All units are uniquely affordable — about $60,000 for a unit as compared to about $300,000 at many similar residential living facilities.

California Schools to Open for Small Groups with ’Acute’ Needs under New Guidance
By John Fensterwald, EdSource, August 14, 2020
Photo by Allison Shelley for American Education: Images of Teachers and Students in Action
School districts will be able to bring back to school small groups of students with disabilities and others with “acute” needs for face-to-face instruction, Gov. Gavin Newsom and State Board of Education President Linda Darling-Hammond announced Friday.

The California Department of Public Health will provide details for districts to follow, perhaps next week. All districts will be able to bring small groups of students on campus, including those whose schools cannot currently open because they’re in counties on the state’s watch list for high rates of coronavirus infection, hospitalizations and other criteria, Darling-Hammond said.
The state will move forward with this policy, Newsom said, out of the “recognition that there are kids that will never” be able to adjust to learning online “no matter what kind of support we provide, even if we individualize it.”

Many special education students have suffered during distance learning: students with autism, learning disabilities and emotional conditions as well as those who normally would receive in-person occupational and physical therapy. But large numbers of homeless and migrant students and students in foster care also have been greatly droppable-1598051716452affected.

Florida - Panel Mulls Nursing Home Visits Without Testing
By Christine Sexton, News4JAX, August 17, 2020
Top health care regulators in Gov. Ron DeSantis’s administration on Friday discussed a limited reopening of nursing homes and other long-term care facilities that would not require COVID-19 screening for visitors.

Members of the Task Force on the Safe and Limited Re-Opening of Long-Term Care Facilities met for about 90 minutes before agreeing to meet again Tuesday to consider the details of allowing “essential” and “compassionate” visitation at nursing homes, including facilities that have residents who have tested positive for COVID-19.
Under the proposal floated Friday, people visiting the long-term care facilities would have to wear personal protective equipment, such as face masks.

Agency for Healthcare Administration Secretary Mary Mayhew, who is the task force’s chairwoman, said she wants the panel to provide short-term recommendations to DeSantis immediately. One of the suggestions would require facilities to keep records authorizing individuals to visit certain residents.

Mayhew made clear Friday that visitation shouldn’t hinge on testing.

“Testing is very important for a host of reasons, but my cautionary note about testing is it’s a point in time. You can test someone yesterday and they can be positive the next day, which is where the PPE is important,” Mayhew said. “What we don’t want is for it to detract from the vigilance around the use of PPE because fundamentally I am confident that with the right (personal protective equipment), with the right training, we can safely allow individuals to be back with their loved ones.”
Florida Department of Health Secretary Scott Rivkees, also a task-force member, backed Mayhew’s position.

But Brian Lee, executive director of Families For Better Care, said allowing entrance into a facility without prior testing is dangerous.

“My jaw dropped to the floor,” Lee told The News Service of Florida, when asked about the panel’s proposal. Lee’s organization advocates for residents of long-term care facilities.

DeSantis stopped visitation at nursing homes and other long-term care facilities in March, as the coronavirus pandemic began to sweep the state.

Task force member Mary Daniel, who drew national attention after she went to work as a dishwasher at a memory-care facility so she could spend time at the center with her husband, agreed that testing is necessary.

She said family members would be willing to pay for tests if they knew the screenings would allow safe visitation.

“I do believe that testing is our end answer and that we need to get point-of-care testing at these facilities,” Daniel said Friday.

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.


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.


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.)


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.

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