August 7, 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
Urge Congress to Increase Equitable Funding in the Coronavirus Relief Bill

Congress is in the process of negotiating the current Coronavirus Relief Bill. VOR has identified two key policy proposals to protect individuals with intellectual and developmental disabilities (I/DD) and to shore-up state developmental disability (DD) systems that have been adversely affected by the cost of responding to COVID-19. We urge our families to contact their representatives and senators in Congress and urge them to support VOR’s priorities:
1. We urge Congress to approve an additional injection of federal funds into state DD service systems through extending the existing increase in the Medicaid Federal Matching Assistance Percentage (FMAP) until the pandemic is over.

2. We urge Congress to provide targeted assistance for needed personal protection equipment and additional benefits for direct support personnel in all service settings for persons with I/DD. All these individuals are highly susceptible to COVID-19, regardless of where they live. Congress should reject proposals that would limit these benefits to personnel providing services in HCBS settings only. That approach would pit Medicaid programs and I/DD Medicaid beneficiaries against one another by favoring one setting over the other. Congress should not be in the business of picking winners and losers among vulnerable people; it should provide additional funding for personnel in all residential settings, including individual homes and Intermediate Care Facilities.  

Taking action is easy. Please click the link below to be taken to a letter that can be automatically sent to your representative and senators in Congress.
Opinion: Stop Canceling Options for Severely Autistic Adults
By Susan Jennings, Medium/NCSA, August 5, 2020

The words “Willowbrook” and “Pennhurst” conjure images of horror in the public mind — visions of naked, vulnerable, disabled people wallowing in their own filth, abused and neglected in large, cavernous warehouses whose very names have become bywords for suffering and human misery. Lest we forget their manifold horrors, we are periodically reminded of Willowbrook and Pennhurst by scolding articles and shocking documentaries, ostensibly meant to ensure that their atrocities are never repeated again. If that were indeed the purpose of the exercise, it would be a good and noble one; but there is a darker agenda at work, hidden from public view, one that — should it succeed — will result in human suffering on an unimaginable scale.

The author’s son resides at White Haven Center, an ICF in Pennsylvania.
My severely autistic son had his own horror show, and it began when he aged out of the educational system. He suffered a broken eye socket, was given stitches in the back of his head, was exposed to pornography, was afraid to take off his clothes to shower, was deprived of clean towels and even a bar of soap, and slept on a bare mattress in his dirty street clothes and shoes. He was toxically overmedicated, the side effects of which included the development of Parkinsonian tremors in his hands, disfiguring female breasts, and psychotic breaks with reality from powerful psychotropics administered to him against his will.

Did this litany of horrors happen to my son in an “institution?” No. All of that suffering took place in the lauded substitute for the “institution” — the privatized, so-called “Home- and Community-Based Setting” (HCBS) waiver services. In his time in the “community,” my son was discharged from six different community group homes administered by three different state providers, who offloaded him into five different psychiatric facilities over the course of four years. His life was a living, ceaseless hell until he was rescued by a dreaded “institution,” the Intermediate Care Facility that finally affords him quality of life and freedom from abuse.

For the last 40 years, there has been a relentless and largely successful campaign to demonize the word “institution,” and ensure that everyone in the world of disability policy mouths the same, simplistic mantra: “Institutions bad, ‘Community’ good.” These activists use the word “institution” to paint all forms of disability service — except, of course, the model of care provided by the one-size-fits-all HCBS waiver — with that same broad brush, in order to condemn and eliminate those models of disability-care that they don’t like. The victims of this propaganda campaign are those with severe autism and profound medical challenges, to say nothing of their desperate and beleaguered families who are left without recourse when their children’s care becomes too difficult to manage.

What is the activists’ endgame? The complete and total “deinstitutionalization” of disability services, and the elimination of all out-of-home care for those with developmental disabilities. This assault on structured care for the disabled is being carried out in just the same manner as was the elimination of many congregate-psychiatric setttings for the mentally ill, a policy whose failures are well known to all — homelessness, incarceration, and an endless, traumatizing cycle of suffering for the most severely mentally ill. Deinstitutionalization of the mentally ill was a national disgrace, a pursuit of the so-called “Right to Fail” that, in practice, meant “dying with your rights on.”

Willowbrook and Pennhurst were not always “Willowbrook” and “Pennhurst.” They became such “snake pits” as a result of overcrowding, underfunding, mismanagement, and understaffing. Residents were accepted to these facilities who didn’t require intensive care, akin to crowding a cancer ward with flu patients. At one point in Willowbrook’s history, there were 40 residents per one staff member.
The Intermediate Care Facility — the model of care my son relies on — was created as a modern disability-service model, meant to replace the “snake-pit” institution. ICFs are heavily regulated by the Centers for Medicare and Medicaid Services (CMS), under Appendix J of the CMS State Operating Manual, a 257-page compendium of rigorous quality standards that an ICF must maintain to receive its legal certification.

ICFs are the superior choice for many of the most profoundly disabled members of our society. The sprawling campuses, open spaces, and on-site clinical staff at an ICF — the array of doctors, nurses, behaviorists, psychologists, psychiatrists, and therapists — have few parallels in the so-called “community.” Campus amenities like pools, camping grounds, and gymnasiums offer safe and therapeutic havens for those with severe autism and medically fragile persons with intellectual disabilities. Additionally, ICF’s are required to provide “active treatment,” an interdisciplinary-mode of care focused on training, therapy and medical care; there is no such requirement for “community-based” services. From highly trained and supervised staff to nurses, supervisors, and clinicians, the ICF has a reservoir of medical expertise that many “community” services lack. When it is open to admissions and filled to appropriate capacity, the ICF takes advantage of economies of scale, allowing the costs associated with caring for the most severely disabled to be shared among a larger pool of residents.

Notice: The Arc is presenting a Webinar on Guardianship vs. Supported Decision Making

VOR Families tend to have a somewhat different perspective on the importance of guardianship than that held by some of the Arc's outspoken advocates. We urge you to attend this webinar to find out more about their plans for our loved ones.

In the Arc's own words:

"People with intellectual and developmental disabilities (I/DD) have the same right to make decisions about their lives as people without disabilities. However, their ability to make their own decisions is often questioned by teachers, doctors, family members, and others.

People with I/DD are at an increased risk of being placed under guardianship, and guardianship is frequently still the only option presented and utilized by families and supporters of people with I/DD. Guardianship can be an obstacle to the development of self-determination skills, and research has shown that individuals with reduced self-determination have diminished quality-of-life outcomes and are less likely to live and be integrated into their community.

This webinar will describe guardianship and less restrictive decision-making alternatives, as well as help debunk some of the myths that persist about guardianship and supported decision-making."

National News:
Special Education Students are Not Just Falling Behind in the Pandemic — They’re Losing Key Skills, Parents Say
By Perry Stein and Valerie Strauss, Washington Post, August 7, 2020
Antwon Gibson’s public high school in Northeast Washington didn’t even attempt to teach his “independent living” class virtually this spring. The gregarious 18-year-old has an intellectual disability and reads and performs math below grade level. He’s been out of the classroom since schools closed in March and now requires more help from his family to break down multi-syllabic words.

Ayo Heinegg’s son, a rising sixth-grader in the District with dyslexia and attention-deficit/hyperactivity disorder, is typically a high-performing student. But he struggled to keep up with his coursework on multiple online platforms and lost his confidence in the classroom.

And in Loudoun County, 8-year-old Theo Duran, who is autistic, struggles more to walk up the stairs or hold a crayon to write — all tasks he was making progress on before the coronavirus pandemic hit and shut down his school.

Parents across the country who have students with special education needs say the stakes are high if schools do not reopen soon. They say their
children are not just falling behind academically but are missing developmental milestones and losing key skills necessary for an independent life.

In the conversations about whether to reopen school buildings — or even how to shape virtual learning — parents of special education students fear that the unique needs of their children are not being urgently considered. Their children are often in self-contained classrooms with just six students, and the parents believe there are ways to safely educate them offline, even if the entire student population isn’t ready to go back.

It’s a predicament that highlights just how complicated it will be to return to classrooms. Teachers — whose unions have been protesting the return to in-person classes — say this is the population of students who require the most hugs and comforting back rubs and who could struggle to follow social distancing and mask rules meant to limit the spread of the virus.

Health Care Workers of Color Nearly Twice as Likely as Whites to Get COVID-19
By Christina Jewett, California Healthline, August 6, 2020
Health care workers of color were more likely to care for patients with suspected or confirmed COVID-19, more likely to report using inadequate or reused protective gear, and nearly twice as likely as white colleagues to test positive for the coronavirus, a new study from Harvard Medical School researchers found.

The study also showed that health care workers are at least three times more likely than the general public to report a positive COVID test, with risks rising for workers treating COVID patients.
Dr. Andrew Chan, a senior author and an epidemiologist at Massachusetts General Hospital, said the study further highlights the problem of structural racism, this time reflected in the front-line roles and personal protective equipment provided to people of color.

“If you think to yourself, ‘Health care workers should be on equal footing in the workplace,’ our study really showed that’s definitely not the case,” said Chan, who is also a professor at Harvard Medical School.
The study was based on data from more than 2 million COVID Symptom Study app users in the U.S. and the United Kingdom from March 24 through April 23. The study, done with researchers from King’s College London, was published in the journal The Lancet Public Health.

Lost on the Frontline, a project by KHN and The Guardian, has published profiles of 164 health care workers who died of COVID-19 and identified more than 900 who reportedly fell victim to the disease. An analysis of the stories showed that 62% of the health care workers who died were people of color.

VOR urges its members to consider the advantages and disadvantages of Telemedicine, especially how it may evolve as a replacement for actual person-to-person contact between physicians and people with IDD if adopted by managed care companies for long-term services and supports.
Is Telemedicine Here to Stay?
By Reed Abelson, New York Times, August 3, 2020
Telemedicine is having its moment. Over the last few months, millions of people have relied on video or telephone calls to talk to their doctors. But as the pandemic moves across the United States, and eventually recedes in some places, how long will the moment last?

While patients used virtual visits to avoid overcrowded and potentially infectious doctor’s offices or emergency rooms, many are returning to face-to-face appointments in cities where the threat has subsided.

And insurance payments for telehealth services, especially at full cost, may only be temporary.
Medicare’s coverage of a broad range of services is slated to end when the coronavirus no longer poses a public health emergency. Private insurers, which followed the federal government’s lead, could revert to paying doctors for virtual visits at a fraction of the cost for traditional visits, if anything at all.

Some of the nation’s biggest insurers, like United Healthcare and Anthem, say they haven’t decided beyond September or October on whether to extend the policies they adopted that allowed for coverage in lieu of doctors’ visits during the coronavirus crisis.
“The concern everyone in the industry has is that reimbursement is in jeopardy,” said Dr. Mia Levy, the director of the cancer center at Rush University Medical Center in Chicago, which treated patients virtually during the height of the pandemic. “Because of telehealth, we were able to stay actively engaged with our patients,” she said.

While there is broad bipartisan support for telehealth coverage, Congress would have to pass specific legislation to make some of Medicare’s changes permanent.

“Reversing course would be a mistake,” said Seema Verma, the administrator for the federal program, which reimbursed doctors the same for virtual visits, including those over the telephone, as for in-person ones and relaxed rules about who can use telemedicine.

State News:
Arizona - Group Home Residents are Dying of COVID-19 at Higher Rates, but an Underfunded System Sets Them Up for Greater Risk
By Caitlin McGlade, Arizona Republic, August 1, 2020
People with disabilities who live in state-licensed homes and facilities have died of COVID-19 at more than twice the rate of those who live with family or own their own homes, according to state data.

The virus has killed 21 people with developmental disabilities living in state-licensed settings, bringing the death rate to about 6.5%. Among nearly 5,000 residents, 320 have tested positive.
Those settings include group homes, which are by far the most common, or situations where a person lives alone but relies on caregivers to help with daily tasks. They also include Adult Development Homes, where families host residents in their houses, and intermediate care facilities, which are similar to nursing homes.

Experts say people living in these places may also get delayed treatment because staff might not notice their symptoms as early as family would. Or, experts say, this population might be more prone to severe cases because they tend to be older and have more medical issues than those who live with family.

Stephanie Silvera, an epidemiologist and professor of public health at Montclair State University in New Jersey, suggested that they might suffer tougher bouts of COVID-19 because living with other sick residents exposes them to larger viral loads or because they're cared for by numerous employees who could bring the virus to work.

This is all speculation, however, because the state releases such little data on the matter.

Epidemiologists and advocates interviewed by The Republic said to better understand how the disease is affecting this vulnerable population they'd want to know the number of people tested, the ages of people who fell ill or died and what group homes or facilities had experienced outbreaks.

About 6% of people with developmental disabilities who live in state-licensed homes or facilities have tested positive for COVID-19. That is much higher than the overall population's infection rate in Arizona of 2%.

Some of the disparity can be explained by more testing of people in congregate living settings, as everyone in an intermediate care facility has been tested under a government mandate.
But those residents account for a small fraction of people who live in state-licensed facilities.
The Republic asked the Department of Economic Security for the number of residents who'd been tested. But the Division of Developmental Disabilities, which is part of that department and charged with overseeing services for roughly 44,000 people with developmental disabilities, does not track that number, said Brett Bezio, spokesperson for the department.

The Arizona Department of Health Services did not answer questions about testing statistics for that population.

Epidemiologists and advocates for people with disabilities, however, said it's likely that more testing among a subset of that population doesn't explain away the entire discrepancy.
"In this situation where you're not only finding a higher proportion of cases but a higher mortality rate, that leads me to think that may not be due to differences in testing rates alone," Silvera said.

New York - As Homes for People With Disabilities Sought to Swiftly Isolate Residents With COVID, State Demanded Days-Long Review By Caitlin Antonios, The City, August 5, 2020
As the coronavirus swept through hundreds of New York City’s residential group homes for people with intellectual and developmental disabilities this spring, some facility operators defied state orders on how to handle the virus’ spread.

Going rogue may have helped save lives among a vulnerable population, those who house and support them say.

“We were somewhat fortunate that we had low numbers,” said an employee of a Bronx organization that serves people with developmental disabilities.

The facility had one of the lowest number of deaths among Bronx group home residents, with a 1% fatality rate. That was half of the 2% of group home residents state statistics show died on average at group homes citywide as of late June.
Why the much smaller death rate, even as The Bronx residents were likelier than anyone in New York City to die of COVID-19?

“Part of it was that we acted quickly” — no thanks to state officials, lamented the employee, who has knowledge of the administration’s decision-making process, and asked that they and the group not be named because of concerns about reprisal from the state.

As the virus spread in group quarters of all kinds, from nursing homes to jails, the state required group homes to isolate residents believed to be infected — but where?

The Bronx home decided that vacant spaces within the organization’s facilities would work.
With day programs for their clients shut down, rooms that had been used for programs and socializing would be transformed into isolated units for residents.

The organization also looked to help operators nearby who likewise needed a safe place to house residents with developmental disabilities while they recovered from COVID-19.

A mid-March email the group sent to the New York State Office for People With Developmental Disabilities (OPWDD) seeking its help in identifying groups in need of isolation rooms prompted an unexpected — and, to the employee, confusing — response.

Instead of offering its blessings, OPWDD responded by asking for a seven-point proposal.
The demands included a drawing of how beds would be configured and a description of how protective gear would be provided — at a time of acute shortages that drove some hospital workers to wear garbage bags for want of medical gowns.
After that, two different units from OPWDD would conduct plan reviews, before granting a temporary operating certificate.
By this time, more than 70,000 COVID-19 cases had been confirmed in New York City.
The state’s request left the Bronx provider incredulous. With the virus moving quickly, any time spent waiting for approval risked lives.
Instead of dedicating staff to fill out the proposal and wait for these reviews, the organization ignored the state’s requirements, isolating residents without official approval.

Florida - State Mandates Testing For Staff At Disabilities Facilities
By Christine Sexton, News Service of Florida / WUSF News, August 5, 2020
Group homes and other facilities that care for people with developmental and intellectual disabilities will be required to start testing staff members every other week for COVID-19 beginning Aug. 24, under an emergency rule issued late Monday by Gov. Ron DeSantis’ administration.

The state will provide test kits free of charge so providers, which range from community-based group homes to institutions for people with disabilities, can test employees in an increased effort to keep the virus from spreading further in the residential facilities.

Jim DeBeaugrine, interim chief executive officer of The Arc of Florida, said Tuesday his association had to “work” the DeSantis administration to get the change, explaining that people with intellectual and developmental disabilities are a high-risk population to contract COVID-19.

“I think it’s a relief as much as anything,” DeBeaugrine said. “And it is gratifying. Our people are just as vulnerable as people in nursing homes
and it’s good that that’s getting recognized and they are addressing this issue.”

As of Thursday, 423 group-home residents and 385 staff members had COVID-19 infections, according to state reports.

The emergency rule issued by the state Agency for Persons with Disabilities applies to staff members at group homes and residential habilitation centers and people living at agency-licensed foster care homes, whether they are staff members or not. It also applies to staff members at Sunland Center, a state-run institution for people with disabilities in Marianna.

The tests will also be given to staff at the Developmental Disabilities Defendant Program, which is on the same Chattahoochee campus as Florida State Hospital, a mental hospital that has had reports of cases.

Massachusetts - EOHHS Emails Show Apparent Consensus on Reducing Public Reporting of COVID-19 Data in Congregate Care Facilities
By Dave Kassel, COFAR Blog, August 5, 2020

Internal emails in June among the Baker administration’s top human services administrators reveal an apparent consensus to reduce public reporting of COVID-19 test results in congregate care facilities.

That consensus appears to have led to decisions to stop publicly reporting cumulative COVID testing data and not to report test data on provider staff working in group homes for persons with intellectual and developmental disabilities. For reasons that are unclear to us, the administration publicly reports only the number of staff testing positive in state-run group homes.

In one email, a senior manager at MassHealth appears to have wanted to “sunset” congregate care reporting in general. That was apparently just as Governor Baker was signing legislation into law that would increase reporting requirements about COVID-19 infection rates in congregate care facilities.

COFAR received a total of eight emails last week in response to a Public Records Request filed with the Executive Office of Health and Human Services (EOHHS) on June 25. Our request was for records bearing on an apparent decision to change the reporting in EOHHS’s online Weekly State Facility Reports from cumulative or historic COVID data to “current cases.”

As a result of that change, only a handful of DDS clients are now reported as being COVID-19 “positive” in each EOHHS weekly report, and the number of deaths is only listed for patients who died in the previous seven days. This version of the EOHHS weekly report from May listed cumulative testing data and a cumulative total of deaths.

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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