October 30, 2020
VOR Weekly News Update
VOR is a national non-profit organization that advocates for
high quality care and human rights for all people with
intellectual and developmental disabilities.
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
VOR & You:
VOR's Fall Membership & Fundraising Campaign!

Become one of VOR's "21 Partners" today!
Throughout our 37-year history, VOR’s mission has been to speak out for high quality care and human rights for all people with intellectual and developmental disabilities. We advocate for CHOICE, a full continuum of care and a full range of residential options and employment opportunities.

We invite you to partner with us, to say good-bye to 2020 and its challenges, and to welcome 2021 by pledging to make a recurring monthly donation of $21 to help us carry out our mission.
Every Member GIVE A Member!

A one-year membership is only $45. It's a great way to give to someone in your family and also give to our VOR Family.
So give a little. To someone you love, for someone you love.
Against "Community"
The biggest buzzword in disability rights is undermining intellectually disabled people.
By Amy S.F. Lutz, Pennsylvania Gazette, October 22, 2020
When my severely autistic son, Jonah, was first diagnosed at the age of two, we were so hopeful. How lucky we were, to live in the 21st century! Instead of being institutionalized in snake pits like Willowbrook, Jonah and his intellectually and developmentally disabled peers now had the right to educational, vocational, and residential services in “the community”—the biggest buzzword in disability discourse for the past 50 years. It all sounded so warm and fuzzy—until Jonah broke a teacher’s nose when he was in kindergarten and it quickly became evident that his cognitive and behavioral challenges would require intensive, specialized services. Over the years, these have included autism schools, special needs summer camps, and now, having just turned 21, a disability-specific day program. Although Jonah is thriving, his future is still terrifyingly uncertain. Disability rights advocates are fighting to close such programs, as well as others—like sheltered workshops, farmsteads, and campuses—they consider not in “the community.” It wasn’t until I returned to Penn to pursue my doctorate in the history of medicine, seeking to better understand the trajectory of these debates, that it occurred to me to ask: What, exactly, does “community” mean, anyway?

This is neither a rhetorical question nor an example of academic hairsplitting. Consider this statement by the National Council on Disability: “Living independently and in the community are preconditions for the enjoyment of human rights by people with disabilities and represent core values of the American disability community.” In the first use, community refers to a geographical location, like a neighborhood. In the second, it means a group of people that share certain characteristics, even if they don’t know each other.

There’s yet a third meaning, one that goes back to the beginning of community-based services. During World War II, psychiatrists discovered that soldiers suffering from shell shock—what today we would call post-traumatic stress disorder—were much more likely to recover if, instead of being separated from their units and sent to distant psychiatric hospitals, they were permitted to stay with their comrades. This conception of community—a set of meaningful relationships—would prove influential in civilian practice after the war.

Ideally, community would fit all of these definitions: a local neighborhood filled with like-minded people who really knew and cared about us. This is the romanticized version offered by disability rights advocates such as Ari Ne’eman, founder of the Autistic Self-Advocacy Network (ASAN), who has described the owner of a pizzeria who called to check in on an autistic man who typically ate in his establishment every day, but who had missed several meals due to illness.
Such moments of kindness doubtlessly occur—along with many complaints from the neighbors of autistic individuals banging their heads against the wall at 2 a.m.; NIMBY protests over the location of group homes; and, mostly, profound indifference. Today’s actual US communities are made up of strangers: according to economist Brian Bethune, 50 percent of Americans don’t even know their neighbors.

As these different meanings of community have unraveled, disability rights activists have latched on to place as the one that matters most. In a joint policy paper, ASAN and several other self-advocacy groups argue that “genuine community happens in inclusive, diverse and mixed neighborhoods” populated by “people who don’t have disabilities, and this does not mean staff.” Day habilitation centers, gated communities, clustered group homes, and virtually all settings that serve more than four disabled people at one time are emphatically rejected as “not community.”
The perverse result is evident in a comparison of two sample days at real programs currently serving intellectually and developmentally disabled (I/DD) clients:

Program A: Client spends the day feeding horses, collecting eggs, and picking tomatoes at a farm-based program. At lunch, he joins 32 peers for a meal they have helped prepare using ingredients produced at the farm.

Program B: Client spends 1.5 hours in a van with two peers and one direct support professional (DSP) driving to a mall 70 miles away. The group walks around the mall for two hours, buys nothing, then returns.

According to an increasing number of policies, only Program B is considered “in the community.” In a statement issued last year, groups including The Arc, Autism Society, and others urged Congress to pass legislation stipulating that disability services funded through Medicaid be “provided in the community in inclusive and integrated settings.”

National News:
CMS Faces Pressure To Track COVID-19 At Institutions, Group Homes
By Michelle Diament, Disability Scoop, October 26, 2020
Lawmakers are pressing the Trump administration to track COVID-19 among people with disabilities living in group homes and institutions, where more than six months into the pandemic cases are still largely going undocumented.

Three U.S. senators are calling on the Centers for Medicare & Medicaid Services to start collecting and reporting data about the number of coronavirus cases in a broader array of congregate settings — including those serving people with disabilities — by the end of the month.
Currently, CMS requires nursing homes to report COVID-19 cases to federal officials and notify residents and their families, but no similar mandate exists for other types of congregate settings even though their residents also face a high risk of transmission. Advocates have been pressuring Medicaid officials for months to institute similar procedures for facilities serving people with disabilities, but CMS has remained mum on the issue.

“Despite the high risk of contracting COVID-19 for older Americans, children and adults with mental illness, and children and adults with disabilities living in or receiving services in congregate care settings, there are huge gaps in federal reporting requirements for these facilities,” wrote Sens. Patty Murray, D-Wash., Maggie Hassan, D-N.H., and Elizabeth Warren, D-Mass., in a letter to CMS Administrator Seema Verma.
“As a result, federal government officials, public health experts, and the public have no comprehensive information on COVID-19 occurrence and fatality rates in various congregate care settings — all while residents continue to face a significant public health threat.”

The request comes as the country sees a new surge in coronavirus cases amid an ongoing pandemic that has disproportionately affected those with developmental disabilities. Research shows that people in this population who are living in group homes are significantly more likely to contract the virus and die from it as compared to others.

Nonetheless, the senators indicated in their letter that a review of state-level requirements across the nation found that only nine states are reporting on COVID-19 cases at institutions for people with disabilities, seven report on group homes and just one is reporting on day facilities for those with disabilities.

States Struggle to Draft COVID-19 Vaccine Plans While in the Dark on Details, Funding
By Laura Olson, Pennsylvania Capital-Star, October 27, 2020
Across the hundreds of pages of plans that state officials sent to the Centers for Disease Control and Prevention on distributing and tracking the yet-to-be-approved COVID-19 vaccines, there are more questions so far than answers on how exactly vaccine programs will be carried out.

Yet states will be on the front lines for a far-reaching vaccination initiative expected to cost in the billions, as the nation registers more than 8.3 million COVID-19 cases and 221,000 deaths. The federal government still has not done its part either, with additional vaccine funding stalled as Congress and the White House extend months-long talks over a new relief deal.

On Tuesday, Pennsylvania charted its highest, single-day total for COVID-19 cases, with 2,751 people statewide testing positive for the virus. That news came just one day after state Health Secretary Dr. Rachel Levine again urged residents to use face masks, practice social distancing, and to wash their hands to help contain its spread.
Across the country, other states have expressed similar concern. A review by States Newsroom of a dozen state plans found, for example:
  • Virginia officials outlined millions of dollars in anticipated costs, but they don’t yet have the money to pay for them.
  • Those in Arizona flagged that small rural clinics will need smaller allotments of the temperature-sensitive medications than the 1,000-dose increments expected in one scenario—a situation that seems likely to play out across states.
  • Colorado leaders cautioned that their phased plan for prioritizing who gets the vaccine doesn’t yet address children and pregnant women, because they haven’t been included in vaccine trials.
And how exactly will states ensure that their residents return for the second dose of what’s expected to be a two-part vaccine? Officials in Ohio and other states say they’re working on it, through a combination of PR campaigns, postcards, text messages and help from the providers that will be administering those shots.
States are emphasizing that the initial documents they filed last week are just that: Drafts that will be updated repeatedly as it becomes clearer which vaccine is likely to make it through the approval process first and as the CDC releases more guidance on who should be prioritized for the initial doses.

The initial state plans for the massive logistical undertaking were due to the CDC on a fast timeline, only a month after the administration released its initial COVID-19 vaccination playbook. As those plans were being filed, the National Governors Association sent a long list of questions to the Trump administration, seeking more details on what states can expect when it comes to vaccine distribution, tracking and additional money to pay for those efforts.

“We need to answer these questions before the vaccine is available so that we are ready to go and no one is caught flat-footed when the time comes to vaccinate people,” New York Gov. Andrew Cuomo said in a public statement accompanying those questions.

People With Down Syndrome 10 Times More Likely To Die From COVID-19
By Shaun Heasley, Disability Scoop, October 28, 2020
Individuals with Down syndrome are at especially high risk of hospitalization and death from the coronavirus, researchers say, adding to evidence that the virus is particularly hard on those with developmental disabilities.

People with the chromosomal disorder are four times more likely than others to be hospitalized due to COVID-19 and they face a 10 times greater risk of dying from the virus.

The findings, published in a research letter this month in the journal Annals of Internal Medicine, are based on a review of medical records for 8.26 million adults in England between late January — when the virus first emerged in that country — and June.

The group included 4,053 people with Down syndrome and 68 died during the study period, nearly 40% of them from COVID-19. By comparison, only 20% of the 41,000-plus deaths in people without Down syndrome were related to coronavirus.
Researchers from the University of Oxford, the University of Nottingham, the London School of Hygiene & Tropical Medicine and University College London said that the higher risk did not seem to be influenced by age, sex, body mass index, smoking status or alcohol intake.

The increased risk was estimated after researchers said they adjusted for “cardiovascular and pulmonary diseases and care home residence, which our results suggest explained some but not all of the increased risk.”

Those with intellectual disabilities other than Down syndrome appeared to have a much lower risk, according to the findings.

Down syndrome is “associated with immune dysfunction, congenital heart disease, and pulmonary pathology and, given its prevalence, may be a relevant albeit unconfirmed risk factor for severe COVID-19,” the researchers wrote.

State News:
Ohio Medicaid Seeks Company to Oversee Treatment of Children with Complex Mental Health Issues
By Laura Hancock, Cleveland . com, October 28, 2020
For thousands of Ohio parents, treatment of their children’s complicated mental health and developmental issues is so expensive that they must relinquish custody to the foster system so their kids get the help they need, via Ohio Medicaid.

Mark Butler -- a Central Ohio father of a son who has autism, a severe intellectual disability, several mental illnesses and is nonverbal -- said that time came in 2013, when it was obvious that Andrew’s violent outbursts and behavioral issues were too extreme to address at home. He needed residential treatment outside Ohio. Neither the Medicaid program that covered Andrew at the time, nor the family’s private insurance, would pay for the treatment.

“We were told surrendering custody was the only way to get him the help that he needed,” Butler said. “Making that call to children’s services was the hardest thing I ever had to do in my life.”

Ohio Medicaid on Wednesday announced it is seeking applications until Dec. 16 from insurers and other managed care organizations to oversee and coordinate the specialized treatment of these children in a new program called OhioRISE.

On any given day, over 140 Ohio children are outside the state for treatment. Their care can run up to $1,100 a day, a 200% increase from 2016, said Ohio Department of Medicaid Director Maureen Corcoran. One of the goals of the OhioRISE program is generally to keep children at home or in their communities when possible, which could over the long term save the state money.

Organizations that work with children who would be covered in OhioRISE – an estimated 50,000 to 60,000 kids – praised it as an attempt to improve the system and keep children from falling between the cracks.

California - They Work in Several Nursing Homes to Eke Out a Living, Possibly Spreading the Virus
By Jackie Fortiér, CaliforniaHealthLine, October 29, 2020
To make ends meet, Martha Tapia works 64 hours a week at two Orange County, California, nursing homes. She is one of thousands of certified nursing assistants who perform the intimate and physical work of bathing, dressing and feeding the nation’s fragile elderly.

“We do everything for them. Everything you do for yourself, you have to do for the residents,” Tapia said.

And she’s one of many in that low-paid field, predominantly women of color, who work at more than one facility.

In March, when the coronavirus began racing through nursing homes, the federal government banned visitors. (That guidance has since been updated.) But even with the ban, infections kept spreading. A team of researchers from UCLA and Yale University decided to examine the people who continued to enter nursing homes during that time: the employees.

Keith Chen, a behavioral economist and UCLA professor, said the key question is this: “The people who, we can infer, work in this nursing home — what other nursing homes do they work at?”

Using location data from 30 million smartphones when the visitor ban was in place helped the scientists “see” the movements of people going into and out of nursing homes. The data showed a lot of nursing home workers are — like Tapia — working at more than one facility. Chen said the findings suggest that staffers who work in multiple nursing homes are one source of the spread of infections.

“When you learn that over 20 of your workers are also spending time in other nursing homes, that should be a real red flag,” Chen said.

More than 84,000 residents and staff members of nursing homes and other long-term care facilities have died of COVID-19 across the U.S.,
representing 40% of all coronavirus fatalities in the country, according to KFF’s most recent analysis. (KHN is an editorially independent program of KFF.) In California, the analogous toll is more than 5,700 deaths, making up 35% of all coronavirus fatalities in the state.

The UCLA team created maps of movement and found that on average each nursing home is connected to seven others through staff movement. Limiting nursing home employees to one facility could mean fewer COVID-19 infections — but that would hurt the workforce of people who say they work multiple jobs because of low wages.
After each of her shifts, Tapia worries she’ll bring the coronavirus home to her granddaughter. She tries to take precautions, including buying N95 masks from nurses. She knows it’s not just patients who are at risk. Nursing home workers such as Tapia are also contracting COVID-19 — in California alone, 153 of them have died since the pandemic began.

At the nursing home where she works in the morning, Tapia gets an N95 mask that she must only use — and reuse — in that facility. At her other nursing home job, in the afternoons, she gets a blue surgical mask to wear.

“They say they cannot give us N95 [masks],” she said, because she works in the “general area” where residents haven’t tested positive for the coronavirus.

She doesn’t want to work at multiple nursing homes, but her rent in Orange County is $2,200 a month, and her low pay and limited hours at each nursing home make multiple jobs a necessity.
“I don’t want to get sick. But we need to work. We need to eat, we need to pay rent. That’s just how it is,” Tapia said.

Follow-up on an article from last week's newsletter:

Texas Social Workers can No Longer Discriminate against LGBTQ and Disabled People after Council Reverses Decision
By Elizabeth Thompson, Dallas Morning News, October 27, 2020

A state council voted Tuesday to reverse a decision that would have allowed social workers to turn away LGBTQ or disabled clients.

After backlash from lawmakers, social workers and advocacy groups, the Texas Behavioral Executive Council voted unanimously to again include disability, sexual orientation and gender identity in the nondiscrimination clause of the social worker code of conduct, according to The Texas Tribune.

On Oct. 12, in a joint meeting with the Texas State Board of Social Work Examiners, the council had voted unanimously to take those protections away. Republican Gov. Greg Abbott’s office had recommended that move, saying it would align better with the state’s discrimination policy for social workers, the Occupations Code.

But lawmakers, social workers and advocacy groups were outraged by the change.

They said the decision was an effort by the governor’s office to exempt social workers and other mental health professionals from nondiscrimination requirements because of their religious beliefs after the Legislature was unable to pass bills to that effect.

New Jersey - Statement on Hearing Targeting Abuse & Neglect of People with Disabilities in Group Homes
Press Release, InsiderNJ, October 23, 2020

Following Thursday’s meeting of the Assembly Human Services Committee to discuss abuse and neglect of individuals with disabilities in group homes and other congregate care facilities, committee chair Assemblywoman Joann Downey (D-Monmouth) released the following statement: 

“About one in five Americans have a disability, and unfortunately many will become victims of crime at some point in their lives. People with disabilities deserve safety and security, especially in the place they call home. Their families and guardians deserve respect, transparency, and a collaborative relationship with the group home staff.

         “In May 2019, New Jersey saw the devastating impact of severe abuse and neglect at group homes owned by Bellwether Behavioral Health. Residents were forced to live in filthy, unsafe conditions, and failed to receive critical medical care. The situation was inhumane and wholly unacceptable. I strongly supported the Department of Human Services’ decision to shutter Bellwether’s operations for good.

         “It’s clear that we are not where we need to be on delivering compassionate care to people with disabilities. We need to bring attention and respond to systemic abuse in group homes so that we may prevent future tragedies. We also acknowledge that there are good people who as direct support professionals care for our loved ones but may need more training, support and a career path to earn higher wages in this underpaid field. It is important that this workforce grows stronger and remains constant in the residents’ lives. 

Spotlight: Why Murray Center?
Why Murray Center?
The Murray Parents Association has been releasing a series of five videos featuring families explaining why Murray Center and Intermediate Care Facilities can offer care and benefits not available in other settings. ***** Highly Recommended!
Three of the families of Murray Center Residents tell their personal stories and show how Murray Center has helped people with Intellectual and Developmental Disabilities of all ages.

In the first video, Peggy strong describes Marjorie's journey, and how Murray Center has changed her life and given her freedom that she had never had in group home settings.

In the third video, Rita Hicks shares about how Murray Center has given a new life and new possibilities to her friend Renee Sharp.

In the second video, the Duecker family speaks about how important the Murray Center has been in supporting their son with severe autism and helping him to control his behaviors.
This incredibly moving video shows the difference that just one year at the Murray Center has made in the lives of Lori Feldt and her son Max.

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


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

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

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


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

H.R. 582 & S. 150 - The Raise the Wage Act - This bill is aimed at raising the minimum wage, but it also has provisions to eliminate 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

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


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

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


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

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

Current Telehealth bills in the 116th Congress include:

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

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

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

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

Our loved ones' caregivers are essential to their health, safety, and happiness.
In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to join.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at

with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

What's Happening In Your Community?

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]
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.
Please don't unsubscribe!


If you have not received the newsletter and you think you have been unsubscribed in error, please write to [email protected] to re-subscribe.