September 11, 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:
Direct Support Professionals
Recognition Week
September 13 - 19, 2020
‘The true measure of any society can be found in how it treats its most vulnerable members.’ - Mahatma Gandhi

We, the parents, siblings, guardians, and friends of individuals with intellectual and developmental disabilities, would like to extend our thanks in recognition of the kindness, the good work and the personal sacrifices that Direct Support Professionals make to ensure the health, safety and happiness of all people with I/DD.
Amy S. F. Lutz to speak at Mt. Sinai Advances in Autism Conference
Thursday, September 17, 2020
Registration is free.
ACL and ONC Webinar: ID/DD Day Services in the Era of COVID-19
Wednesday, September 16, 2020 2:00-3:30 PM ET

The Administration for Community Living and the HHS Office of the National Coordinator for Health Information Technology (ONC) are partnering to present a series of webinars. This webinar will:

  • Review Appendix K approaches implemented in state ID/DD waivers;
  • Hear from providers and consumers about providers’ strategies to deliver day services while complying with shelter-in-place and social distancing requirements; and
  • Discuss potential changes to ID/DD payment structures that could give providers greater flexibility while promoting independence and inclusion of people with ID/DD.

National News:
COVID-19 Vaccine Rollout Could Leave People With Disabilities Behind
By Michelle Diament, Disability Scoop, September 11, 2020
With plans now in the works for distributing a coronavirus vaccine, there are worries that despite the high risk they face, people with developmental disabilities may not be given priority.

The ongoing COVID-19 pandemic has the whole world waiting for a vaccine, but whenever one does become available, there won’t immediately be enough of it for everyone all at once. As a result, government officials are working to establish a pecking order.

Earlier this month, a committee from the National Academies of Sciences, Engineering and Medicine issued a preliminary framework outlining how a COVID-19 vaccine might be allocated. The committee formed at the request of the National Institutes of Health and the Centers for Disease Control and Prevention is expected to issue a final report this fall, which is intended to help inform federal decision-making on a vaccine.

The draft document included a four-phase plan for how to hand out a vaccine. Front-line health care workers would be prioritized as well as older adults
living in congregate settings and people with high-risk conditions.

The proposal has disability advocates alarmed, however, because it contains no mention of when people with developmental disabilities could access a COVID-19 vaccine.

There are provisions for individuals living in group homes who would be in phase two. But, advocates say the plan overlooks people with developmental disabilities living in the community and in other types of congregate settings like nursing homes, developmental disability centers and psychiatric facilities unless they happen to have other high risk conditions too. These individuals wouldn’t qualify for a vaccine until phases three or four, stages when it would be broadly available to children and young adults.

State News:
Texas - 'Advocacy' Groups Spreading Misinformation About SSLCs
By Michael Danks, Denton Record-Chronicle, September 4, 2020
An open letter from the Denton State Supported Living Center Family Association regarding the COVID-19 crisis management and correcting misinformation:

Our State Supported Living Centers (SSLCs) situated across Texas provide the highest-structured standard of care for individuals with severe-to-profound intellectual developmental disabilities (IDD), complex behaviors and medically fragile conditions. The global COVID-19 pandemic continues to ravage health care services, and providers and these facilities have faced challenges not imagined six months ago. Thankfully, SSLCs have persevered with great success. The SSLCs’ operation stands as a blueprint for effective crisis management and has likely saved many lives. Certainly, missteps have been made, lessons are being learned and adjustments are being made by the SSLCs.

Many family association members feel there has been overreach by the state in controlling visitation, but we are confident a solution will soon be reached. Our family association is currently in ongoing discussions with the State SSLC administration and family members as to how best to arrange visitation for our loved ones. It is the consensus among the Denton SSLC Family Association (DSSLCFA) that the facility should be congratulated on their management of the facility during the pandemic.
As guardians, family and friends of those being cared for in our SSLCs, it is disconcerting to discover there are groups and organizations intentionally attacking, discrediting and seeking to eliminate the life-sustaining services provided by Texas State Supported Living Centers. So-called “advocates” of disability services such as the Disability Inclusion Society, Free Our People Project, The ARC of DFW and The Self-Determination Group have criticized the operation of the SSLCs. These “advocate” associations are staffed in part by paid representatives not familiar with the current operation of SSLCs and are funded in part by individuals and groups who seek to profit from closing Texas SSLCs. These groups have distributed misinformation to the media, Legislature and hosted social media “vigils” falsely claiming to represent the majority of individuals and families served by our SSLCs.

  • FALSE: SSLC residents are unheard, mistreated and oppressed
  • FALSE: SSLCs are akin to a separate but equal culture
  • FALSE: Olmstead decision demands elimination of SSLCs

In the spirit of the above article, we present the article below. The authors make some valid points about Congress' willful disregard of the needs of people with I/DD. But why do they feel the need to throw in their boilerplate language about "institutions", and to discriminate against those in the disability community who benefit from ICF care instead of being confined to HCBS waiver services? We all know that for many people with more severe I/DD, small group homes tend to be far more isolating than a larger congregate care home, and that people do not receive equivalent services in HCBS facilities.

That being said, please take the following article on its merit, and hope that one day the authors will learn to respect the needs of ALL people with I/DD, and the rights of their families to determine what is best for their loved ones.
South Carolina - Opinion: Why People with Disabilities, Their DSPs in Crisis during Pandemic
Margie Moore-Williamson and Danielle Goonan, Independent Mail, September 6, 2020

We are deep into the worst public health crisis of our lifetimes. Cases of COVID-19 are rising in many parts of our country and it feels like there is no end in sight.

For the 14,309 people with disabilities receiving services in South Carolina and the essential workers who support them across our state, the pandemic is uniquely catastrophic and the future, uncertain. During a time when it feels like so much is out of our control, we look to those who can do something – to act now – before it’s too late.

We need Congress to hear us loudly and clearly. So far, the disability community has been left out of legislative plans to recover from this unprecedented virus. We have already seen a disproportionately large impact on people with disabilities and risk to the direct support professionals (DSPs) who care for them.

In the past three weeks there has been a 203% increase in coronavirus cases among people with disabilities and their support staff. We need members of Congress debating the next COVID-19 relief bill to understand that we are on the edge of a deepening crisis for people with disabilities and DSPs here in South Carolina and nationwide.

This is why we’re scared: People with intellectual and developmental disabilities often need extra support to be a part of their communities. DSPs help with everyday tasks such as getting up in the morning, bathing, dressing, household tasks like meal preparation, and grocery shopping. The work that DSPs do is invaluable, helping people with disabilities live and work in their communities.

Without them, people with disabilities are at risk of ending up in institutions, and we’ve seen during the pandemic that institutionalization carries with it more than just the risk of isolation. As the virus has spread across the US, people with disabilities in institutional settings like nursing homes have faced substantially higher rates of infection and death.

The work that DSPs do is personal, necessary, and cannot be done from 6 feet away. Yet during the pandemic, many DSPs have faced greater challenges accessing personal protective equipment than other health-care providers. Even without adequate supplies, many DSPs are making heroic decisions daily to keep the individuals they support safe, sometimes even living with them instead of their own families.

This is despite being paid on average less than $10 per hour and facing a turnover rate of nearly 50% nationwide. Before the pandemic, there was already a workforce crisis; it will only get worse as the already low wages are impacted by states facing massive budgetary shortfalls. 

Maryland - Ten months after student’s death, school system hasn't answered the family's questions
By Mallory Sofastaii, WMAR News, September 9, 2020
Bowen Levy, a 17-year-old Central Special student with autism and Pica, a type of eating disorder, died last November after choking on a rubber glove.

It’s been months since Anne Arundel County Public Schools launched an investigation, however, the Levys can’t get answers to the most basic questions including when the investigation will be complete, who is investigating, and why they haven’t been interviewed or contacted. The school system’s probe follows an investigation conducted by the Anne Arundel County Department of Social Services, which found evidence of child neglect.

Through various record requests, Bryan Levy, Bowen’s dad, obtained documents from the investigation in April. “Their findings and closing summary said there’s evidence of child maltreatment, there’s evidence of child neglect. ‘It is the assessment of this worker that Bowen Levy’s death was the result of systemic failure at Central Special,’” Levy read from the redacted excerpt of the closing summary.

The summary also stated that Bowen’s 1:1 assigned staff member was absent, his teacher left at 12:45 p.m., and there were multiple staff who substituted throughout the day.

“Per the Principal, the teacher has autonomy to assign staff to a 1:1 coverage within the classroom and if the teacher is absent, the teacher leaves sub plans. One staff member, [], reported that she did not review the sub plans that day. …

At the time that it was reported that someone finally noticed that he was choking, Bowen was in a classroom with six additional students, one staff member [], and two high school volunteers. It is the assessment of this investigator/worker that it is more likely than not that Bowen was able to obtain and swallow the rubber glove that ultimately led to his death due to a lack of supervision in the classroom at the end of the day. Had the classroom been staffed with two additional staff members, rather than student volunteers who are not caregivers for the students, Bowen may have been observed obtaining the glove and/or putting it in his mouth.”

Maine - Parents of Students with Disabilities Brace for School Year Unlike Any Other
By Evan Popp, Maine Beacon, September 10, 2020

Concerned and conflicted.
That’s how Carrie Woodcock, executive director of the Maine Parent Federation (MPF), described parents of kids with disabilities as schools across the state reopened this week with a variety of learning models aimed at preventing outbreaks of COVID-19 in educational institutions.

The conflicted feeling comes from fears about sending kids with disabilities back to school amid the pandemic because in-person learning is often what’s best for their educational development, said Woodcock, who has a daughter with Down syndrome.
But in addition to fears around health, parents are concerned about access to education during a school year unlike any other. In particular, Woodcock and other parents of students with disabilities are wondering whether the same services their kids had in previous years will be provided, how to navigate school mask policies and what impact the hybrid education model will have on students.

New York - ‘It Was Disgusting’: Teachers at NYC schools for Children with Severe Disabilities Blast Poor Conditions Inside
By Brittany Kriegstein and Michael Elsen-Rooney, New York Daily News, September 9, 2020
A long-awaited return to school for some teachers was anything but a welcome sight.

Educators at a building for children with severe disabilities walked into dirty conditions, missing protective gear, and incomplete ventilation checks, teachers and union officials said Tuesday.

“It was disgusting,” said Mark John, a teacher and union chapter leader at K368C, a District 75 program for kids with intensive special needs.
"There were bugs, no PPE, the rooms weren’t clean, just a lack of priority in terms of getting the building up and running for students and staff to be in — to the point where we had to come out of the building.”

The building never got a required ventilation inspection, according to union officials, and will be temporarily shut down.

“They [the Education Department] claimed yesterday that they checked every school,” said United Federation of Teachers President Michael Mulgrew. "Well, this is one of their school sites. This wasn’t checked.”
Education Department officials said they delivered personal protective equipment when they learned of the shortage, and are working with officials from the state, which owns the building, to coordinate a ventilation inspection.

“We are taking immediate action to address any health and safety concerns, including in State-run facilities where we provide education,” said agency spokesman Nathaniel Styer.

In the meantime, teachers decided they couldn’t stomach working in the building, which was littered with dead cockroaches and had no hand soap in the bathrooms.

“We knew we had to come out of the building, because it wasn’t safe,” said John.

Mulgrew chided Education Department executives for not showing enough urgency in delivering PPE to nervous staff.

Georgia - Gracewood Site ‘Perfect’ for State Veteran Cemetery in Augusta
By Susan McCord, Augusta Chronicle, August 5, 2020
Approximately 200 acres on the Gracewood Hospital campus is the target site for Georgia’s latest state veterans ceremony.

The project would cost the city nothing and has long been a dream of former Augusta Mayor Bob Young, who spoke this week with Forces United Deputy Director Don Clark to Augusta
commissioners about the status of the project.
Young said the effort now has support from several veterans groups, the General Assembly and members of Congress. Last week, Mike Roby, the commissioner of Georgia Veteran Services, visited the site, he said.

After the visit, Roby “promised Augusta’s request would be at the top of their agenda,” Young said, with approval likely in “weeks, rather than months.”
Veterans office staff said Gracewood’s unusedacreage is “a perfect site” for the cemetery, he said.

The population at Gracewood, a hospital and intermediate care center for people with developmental disabilities, is shrinking as the state de-institutionalizes residents and returns them to the general population. The facility sits on 420 acres off Tobacco Road near Peach Orchard Road.

Spotlight: Police Response to People with I/DD:
Utah police shot a 13-year-old boy with autism after his mother called 911 for help
By Tim Elfrink, Washington Post, September 8, 2020
When Golda Barton dialed 911 on Friday, she hoped emergency responders could help hospitalize her 13-year-old son, who has Asperger syndrome and was having a mental crisis.

Instead, a Salt Lake City police officer repeatedly shot Linden Cameron after he ran away, leaving the boy in serious condition with injuries to his intestines, bladder, shoulder and ankles. Barton says he was unarmed, and police said they didn’t find a weapon at the scene.

“He’s a small child. Why didn’t you just tackle him?” Barton said in a tearful interview with KUTV on Sunday. “He’s a baby. He has mental issues.”
Barton said she’s gotten few answers from police. Salt Lake City’s mayor pledged on Sunday that an investigation into the incident would be quick.

“No matter the circumstances, what happened on Friday night is a tragedy, and I expect this investigation to be handled swiftly and transparently for the sake of everyone involved,” Mayor Erin Mendenhall (D) said in a statement to the Salt Lake Tribune.

Local autism advocates also decried the shooting and called for changes to how police respond to
mental health crises.

“Police were called because help was needed but instead more harm was done when officers from the SLPD expected a 13-year-old experiencing a mental health episode to act calmer and collected than adult trained officers,” Neurodiverse Utah said in a statement.

Nationwide, police have seriously injured and killed scores of mentally ill people when called by relatives or bystanders to help, including in recent high-profile cases like that of Daniel Prude, a 29-year-old Black man who died of asphyxiation after Rochester, N.Y., police put a hood over his head during a mental health episode in March. The problem is so acute some cities have moved toward sending non-police crisis units to respond to mental health emergencies.

Virginia - Reshaped 'Marcus Alert' Bill Clears Senate Budget Committee
By Mel Leonor, Richmond Times-Dispatch, September 9, 2020
Legislation to overhaul the way law enforcement agencies respond to emergencies involving a mental health crisis has taken a new shape in the Senate, where lawmakers Wednesday advanced a version that would call on all localities to be part of a crisis response system by July 2022.

The bill, dubbed the “Marcus-David Peters Act,” moving through the Senate would create call centers and short-term mental health facilities meant to offset the role of law enforcement in situations involving people facing a mental health crisis.

The measure is still a long way from becoming law. Lawmakers in the House are also considering a Marcus Alert bill — one that contrasts starkly with the version moving through the Senate.
The Senate legislation has undergone significant changes from what lawmakers originally proposed at the start of session, and represents a different approach from what lawmakers in the House are

Sen. Jeremy McPike, D-Prince William, who introduced the bill, said the new iteration of the bill gives localities more discretion about how exactly to respond to these types of crises: whether law enforcement should respond alongside mental health professionals, and if they do, how those officers would interact with the situation.

Under McPike’s bill, the state will assist with the creation of local crisis hubs and mobile response teams, and develop protocols for how localities should interact with those systems. Localities would need to implement memorandums of understanding with the crisis hubs by July 2022.

Connecticut - Law enforcement must change its approach to people with disabilities, parents tell Police Task Force
By Kelan Lyons, CT Mirror, September 10, 2020
As a parent of two children with autism, terrifying thoughts race through Sarah Geragotelis’ mind when she’s driving with her kids in the car. What if she’s stopped by a police officer who doesn’t understand the reasons behind her children’s behavior?

“I’m often concerned that – I don’t know – my daughter rocks in the car, like what if I get pulled over, or they see my son having a bit of a fit and they take it the wrong way?” she asked.

Or, what if authorities come to their home?

“I almost think we should have some kind of like a checklist at our house so that if we do have a 911 emergency or situation, that people coming in would have a point list to look at, ‘This is what deescalates my child,'” she said.

Geragotelis spoke Thursday at one of the eight public hearings the Police Transparency and Accountability Task Force is in the process of holding to better inform their recommendations to lawmakers on how to make policing safer for all Connecticut residents.

Law enforcement’s interactions with people with disabilities has been a recurring theme of the listening sessions so far. About half of the testimony has dealt with fears over police contact with citizens with mental health conditions or who are on the autism spectrum.

Relations between police and people with autism have been raised in three of the four listening sessions. In the most recent hearing, Helen Taylor, of Waterbury, talked about how she worries about her 28-year-old son interacting with cops.

“Due to his autism, he would not be able to immediately comply with a demand from an officer, or even understand what the officer is asking, and this is true for so many of our individuals on the spectrum,” Taylor said. “This is a situation that could easily escalate as being noncompliant, but it’s just an innocent young man not understanding.”

Taylor is a certified trainer who helps police better understand autism and how to safely engage with people on the spectrum.

“One thing I say to them is that, whenever you approach a person on the spectrum and they behave a certain way, don’t take it personally,” she said. “I think that’s what happens: some officers take certain behaviors as personal, and as we are human, we react a certain way.”

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. 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.)


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.

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