May 15, 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 and YOU:
Stay Safe, Stay Informed

VOR wants you to stay healthy and to protect your family and to be be especially vigilant of your loved ones with IDD. News on this virus and its effects seem to change weekly, sometimes daily, as scientists try to find ways to combat it and states try to reopen their economies in the face of it.

For those interested, here is a link to an informative presentation from PBS' Nova series.

Here is a link to an article on progress scientist have been making in creating new tests for COVID-19.

And here is an interesting piece on the ethical questions at play in determining the effectiveness of any new treatment.

Again, stay safe, and stay informed.
Life with an autistic child can be difficult. During a pandemic it can be grueling
By Feda Almaliti, Stat News, May 15, 2020
The author is the Vice President of the National Council on Severe Autism and Vice President of Autism Society San Francisco Bay Area. She is the mother of three sons, one of whom has severe autism.

The coronavirus pandemic has disrupted daily life for most people around the world. It has completely upended it for people with autism and their families.My son Muhammed — we call him Mu — is 15 years old and severely autistic. He has few words beyond “wanee” (for “I want to eat”), hums and paces incessantly, has the academic skill of a toddler, and is prone to breaking things (we eat off paper plates and have gone through more iPads than I can count).

Like everyone else, Mu has good days and bad ones. But even on his good days, daily life can be a challenge.

The emergence and spread of Covid-19 have further complicated life for Mu. We’ve been cooped up at home since Gov. Gavin Newsom issued a shelter in place order for all Californians six weeks ago.

That means Mu went from going to school every day to being stuck at home. While many of his
classmates continue their schooling via Zoom calls, there’s no way to meet Mu’s educational needs that way: Kids with autism often need highly trained special education teachers and one-on-one attention.

Autistic children thrive on routines and strongly dislike uncertainty and restrictions. The changes wrought by the coronavirus pandemic are clearly affecting Mu’s behavior, and I can see him grow increasingly aggressive and stubborn.

His applied behavioral analysis, a form of therapy that works on skill-building and managing behaviors, has also been scuttled. Here’s an example of how this therapy helps: Although toothbrushing seems like a simple, intuitive process to most, there are actually more than 40 individual steps to get from start to finish. Many children with severe autism, including Mu, must learn and master each step before they acquire the skill.

National News:
COVID-19 Cases At Group Homes, Institutions Going Untracked
By Michelle Diament, Disability Scoop, May 11, 2020

With no official government tally, one group is working to identify how many people with disabilities have contracted or died from coronavirus while living in congregate settings.

The Autistic Self Advocacy Network has created an online tool that compiles data from local governments and media reports across the nation. The figures account for individuals with disabilities living in nursing homes, institutions for people with developmental disabilities, psychiatric hospitals, group homes and other facilities.

To date, the advocacy group estimates that there have been more than 18,000 deaths and an additional 90,000 people who have contracted COVID-19 in these settings. However, some of the numbers include cases among staff members too and the self-advocate organization said it’s working to limit the tally to just residents with disabilities.

Last month, the Trump administration instituted new rules requiring nursing homes to be more transparent with residents and families and report any cases of COVID-19 directly to the Centers for Disease Control and Prevention amid outrage over the toll the virus has taken in these environments. Disability advocates have asked for similar steps to be mandated in settings where people with disabilities live given the risks and the outbreaks that have occurred.

“We implore (the Centers for Medicare & Medicaid Services) to extend these same requirements to all institutional settings — including ICF-IIDs, IMDs, substance use disorder treatment facilities and psychiatric residential treatment facilities — and other Medicaid-funded congregate settings where older adults and people with disabilities live, including group homes and assisted living facilities. The need for transparency, information and data collection is equally as critical to protecting the safety and welfare of people in these settings as they are for residents of nursing homes,” reads a letter to federal health officials from the Long-term Services and Supports Task Force of the Consortium for Citizens with Disabilities, a coalition representing dozens of disability advocacy groups.

The letter cites outbreaks at an institution in Illinois where the National Guard had to be called in as well as another in Massachusetts where nearly half of residents were infected in addition to facilities serving people with developmental disabilities in Utah, Texas and New Jersey. What’s more, coronavirus has affected numerous group homes in New York, Maryland, New Jersey and beyond, the letter indicated.

State News:
Pennsylvania - ‘Running out of Time’: Pa. Group Homes for Intellectually Disabled Warn of Financial Ruin
By Harold Brubaker, Philadelphia Inquirer, May 8, 2020
The Wolf administration this week posted a video showing the governor thanking the workers who care for thousands of intellectually disabled Pennsylvanians in group homes for their vital contribution to keeping some of the state’s most vulnerable residents safe during the COVID-19 pandemic.

What he hasn’t done is follow New Jersey’s lead in providing hazard pay for direct-care workers — who typically make about $13 an hour — during the public health emergency or extra financial support for the agencies that employ the care providers. In New Jersey, similar workers’ pay was temporarily raised by $3 an hour.

The sector is running out of time financially, according to the head of the trade group for Pennsylvania agencies, which typically operate on extremely thin profit margins and have been slammed with extraordinary COVID-19 costs.
A survey last month of 69 Pennsylvania providers of services for intellectually disabled individuals and those with autism found that they had lost, on average, a quarter of their revenue from services such as day programs and transportation that have been cut back due to COVID-19. They had enough cash on hand to keep paying their bills for less than three days without new cash coming in.

“That is unsustainable in any world, let alone a world of Medicaid providers who are almost 100% state and federally funded, Mark Davis, president and chief executive of the Pennsylvania Advocacy and Resources for Autism and Intellectual Disability, said Friday. Without help, “our community system is really in danger.”

Some Arizona Disability Providers Say They Can't Get Personal Protective Equipment
By Kathy Ritchie, KJZZ News, May 11, 2020
Arizonans with an intellectual or developmental disability often attend day programs or live in communal settings, like a group home. Keeping them safe during the coronavirus pandemic is tough. And when there’s limited personal protective equipment, that job is even tougher.

Wendy Shaw is the CEO of an organization called Aires, which provides services, like housing, to people with intellectual and developmental disabilities. "Through this crisis, they are on the frontline," she said.

Shaw is talking about the people who are currently working in one of Aires’ 65 group homes.
"They are in there day to day providing care to somebody, bathing somebody, feeding somebody, changing somebody’s adult diaper."

And if someone has a confirmed case of COVID-19, personal protective equipment will be critical. But Shaw said they don’t have enough of it.

"We have been able to secure cloth masks for all of our staff and the people we support."

As in homemade masks. At the time of this interview, Shaw said there had been no confirmed
cases of COVID-19 among the members she serves… but they have had suspected cases. Which meant a 14-day quarantine for the individual.

"One of the surprises and challenges was to shift from a model where, we’re not medical professionals we’re almost asked to be. said.
And without that protective equipment — masks, gowns, gloves and face shields — "It’s been quite scary for our staff in cases where we’ve had someone that has been tested."

She says in one case it took seven days to get those test results back.

"We generally have 11 staff that work in that home," she said. "Right off the bat, six of them hey I’m not coming back during this time. You’re asking me to risk myself and risk my family for minimum wage."

New York - ‘This is a No Brainer’: Direct Support Provider Quarantines with Those He Serves on Long Island
By Jakob Kaye, AMNY, May 8, 2020
Chris Mitchell was working his second-ever shift as a direct support provider in a house for individuals with intellectual and developmental disabilities in Northport, Long Island, when he heard the news — a member of the house tested positive for COVID-19.

Family Residences and Essential Enterprises (FREE), the nonprofit that operates the home, sent out a call for volunteers to quarantine with the individuals they serve. Mitchell stepped up to the plate.

“I felt like it put myself and everybody else in the best position possible if I just stayed at the house,” Mitchell said. “So I was like, ‘Alright, this is a no brainer, I’m going to stay here.”

For seven days, Mitchell and a co-worker lived with four men, all of whom have intellectual or developmental disabilities, caring for them and providing them assistance day and night.

Mitchell has been working as a direct support provider for nearly 20 years and he’s been working for FREE for nearly a decade. As a direct support provider, Mitchell works with individuals who have physical, intellectual or developmental disabilities, aiding and assisting them through the most basic needs to the more specific needs, like assisting with educational opportunities.
As a profession, direct support providers don’t get the attention other medical providers may get, according to Mitchell and FREE’s CEO Robert Budd.

“If we’re doing our jobs really well, we blend into the community,” said Budd, who’s been with FREE for 35 years. “If we do it well, people aren’t going to realize that we have an equal number of heroes in our field that need to be acknowledged.”

To show their appreciation, FREE, which has over 150 locations throughout Queens and Long Island, doubled the pay for Mitchell and all other direct support providers who quarantined with the individuals they serve. 

Prior to the quarantine, Mitchell wasn’t working full time in a residential setting. Instead, he was working as the assistant director of the FREE Players Drum and Bugle Corps, a drum corps made up of individuals with intellectual and developmental disabilities. 

“Here’s someone who wasn’t part of our residential services and said, ‘You know, I know the guys, I love the guys and I’m happy to volunteer,’ which is so inspiring,” Budd said. “I was just moved by that.”


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.
New Jersey - Two-thirds of New Lisbon Residents Test Positive for Coronavirus
By Lisa Broadt, Burlington County Times, May 12, 2020

Nearly two-thirds of the developmentally disabled adults who live at the New Lisbon Center have tested positive for COVID-19, according to updated numbers released by the state Department of Human Services.

In total, the 288-resident center had 267 residents and staff test positive and eight residents die as of Sunday, according to human services.

The figure is significantly lower than the 333 positive cases reported Friday by the Department of Health.
Human services spokesman Tom Hester said he did not how the mix-up occurred, though for weeks the two departments have reported conflicting numbers.

The updated New Lisbon data specifies that of its 267 positive coronavirus cases, 188 are residents and 87 are staff. Seventy-five residents and 27 staff have recovered, according to human services. The eight fatalities were residents.

Hester described New Lisbon’s outbreak as challenging, but far from unique. “We are pleased that 75 residents and 27 staff have recovered, but as is the case with all congregate facilities, this is a challenging and unprecedented situation,” Hester said in an email Tuesday. “We will continue to do everything we can to protect residents and staff.”

Reopening the Massachusetts Economy Could Add to COVID-19 Risks for Those with Developmental Disabilities
By Dave Kassel, The COFAR Blog, May 11, 2020

It appears that the Baker administration is examining what has been termed “encouraging” testing and hospitalization data on COVID-19 in considering whether to reopen the Massachusetts economy.

We hope the administration will consider, among other things, testing data in the Department of Developmental Services (DDS) system. If not, this could be another example of the apparent disregard the administration has shown for the risk the virus poses to people with intellectual and other developmental disabilities.

Over the past weekend, the Massachusetts State House News Service reported that the administration was looking at  “a number of (COVID-19) metrics considered key to resuming economic and social activity…” That data “showed positive signs” in the most recent report from the Department of Public Health (DPH ), the news service stated.

According to the News Service, the number of COVID-19 patients hospitalized in Massachusetts has declined in 10 of the last 13 days.

But the data isn’t encouraging in the DDS group home system. So, we are concerned that reopening the economy may add to the risks that residents and staff are facing in DDS group homes, in particular. If numbers of COVID-19 cases are still rising in the DDS system, it would have safety implications for all residents in the state.

Data from DDS show that the number of DDS provider-operated group homes reporting residents testing positive rose from 800 to 900 homes (out of 2,100 homes) in a four-day period, from May 4 to May 7. Eight additional residents and four additional staff tested positive at the Wrentham Developmental Center during that period, while the numbers at the Hogan Regional Center held steady.

Meanwhile, DDS is continuing to test residents and staff more slowly than planned, and the Department still has not made testing of staff mandatory.

What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

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

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


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

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

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

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


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

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

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

H.R. 1379 & S. 560 - Ensuring Lasting Smiles Act - To require that group and individual health insurance coverage and group health plans provide coverage for treatment of a congenital anomaly or birth defect. (i.e. Cleft palate, ectodermal dysplasia, etc.)
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