May 22, 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:
VOR Submits Testimony, Suggests Bill Language for Senate Appropriations Subcommittee on Labor HHS concerning Money Follows the Person

This week, members of VOR's Legislative Committee submitted Testimony to the Senate Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies regarding the need to protect Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF or ICF/IID) as the Appropriations Committee negotiates continuing funding ot the Money Follows the Person Rebalancing Act (MFP) in its FY2021 Appropriations Bill.

The original purpose of MFP was to rebalance services between iCFs and HCBS waiver settings, to provide people with IDD and their families with the right to choose which setting is most appropriate to their needs. VOR believes MFP has reached, even exceeded its goal of rebalancing these services, and has been used by states to close ICFs in defiance of the protections written into the Supreme Court's landmark Olmstead decision, often overriding the rights of individuals, families, and guardians to exercise their own choice in determining what is best for the individual.

National News:
States Take Initiative to Ensure that Persons with IDD Are Permitted to be Accompanied during Hospital Stays During the Pandemic

On May 1st, we reported in this News Letter that New Jersey's Health Commissioner had ordered that coronavirus patients with developmental or intellectual disabilities must be allowed a support person at their side during a hospital stay.

Last week, Scott Mendel, Chairman of Together for Choice, contacted me to inform me that they had enacted a similar measure in Illinois after seeing that article. Maryland and Washington, D.C. have enacted similar measures, and advocates in other states have encouraged their governors and health departments to follow suit.

VOR supports these measures and would like to see this policy expanded to help protect people with IDD across the nation.

State News:
New York - Stony Brook Uses New Strategy to Aid Those with Disabilities During COVID-19
Stony Brook University News, May 15, 2020
Individuals with disabilities may not always be able to advocate for themselves in a medical setting. In New York State, these patients have a case fatality rate 2.2 times higher than the overall COVID-19 rate. During the coronavirus pandemic, this problem has been compounded as visitors have been restricted and often cannot advocate for their loved one.  

Michelle Ballan, PhD, Professor of Family, Population and Preventive Medicine in the Stony Brook University School of Social Welfare, created a COVID Disability Form, which she says was a “labor of love,” to help all individuals with intellectual and developmental disabilities (IDD) communicate their needs, whether the patient is verbal or non-verbal.

“As an emergency medicine physician and educator, I realize the importance of providing compassionate, appropriate and effective care to a range of patients and especially including those who are unable to easily communicate for themselves, such as patients with intellectual and developmental disabilities,” said Dr. Wackett, who is also Associate Dean of Student Affairs and Director of the Clinical Simulation Center for RSOM. “This is a skill that can and must be learned by those training to become physicians and especially in such stressful times as during a pandemic.”
This form, which has now been translated into 12 languages, is designed to be completed by an IDD patient’s family or representatives to help medical staff evaluate the patient’s condition. The form contains several different options in which patients or caregivers can explain how the patient is able to best communicate, whether they have certain triggers and responses to triggers, and other valuable information a healthcare worker may need to know about a patient with disabilities. The form has been disseminated by New York Care Coordination Organizations and hundreds of disability agencies nationwide.

The idea has been so well received that Ballan was awarded a grant by Pfizer to develop a training program for healthcare providers on how to best evaluate and care for persons with IDD presenting with COVID symptoms. Dr. Wackett will also be featured in one of the webinars about the initiative.

D.C.’s Intellectually Disabled Residents Face High Rates Of Infection, And Their Caretakers Are Stretched Thin
By Jenny Gathright, The DCist, May12, 2020
New reporting of coronavirus infections has revealed high rates of COVD-19 among D.C.’s intellectually disabled — and an ongoing staffing crisis among the people who care for them.

The District began publishing the data on April 27, nearly a month after it began publishing data on residents of city homeless shelters and the public psychiatric hospital, St. Elizabeths. The information shows that the rate of infection among people being supported by the city’s Developmental Disability Administration (DDA) programs is seven times what it is for the general population.

DDA manages a network of disability service providers. Of the 2,376 people supported by these providers, just over 6% — about 155 people — have tested positive for the virus, and 20 have died. Three staff members of providers in D.C. have died from COVID-19 as well.

The pandemic has led providers to dramatically shift their operations, but disability advocates want to see more action from the D.C. government to stop the spread. And as the region settles in for what could be a long road back to reopening, providers are concerned about how long they will be able to sustain 24/7 support for the intellectually disabled with dwindling staff.

People with developmental and intellectual
disabilities who get sick with COVID-19 face unique challenges. First, screening for the virus is different for those who are nonverbal or unable to explain their symptoms or how they are feeling. It can take direct knowledge and experience with an individual to know when something is off, says Berhanie Tessema, Clinical Director for RCM of Washington, which is part of D.C.’s network of disability service providers.

People with developmental disabilities are now allowed to have a designated support person with them in the hospital, but hospitalization can present challenges, too, since some individuals have multiple people who help support them in various ways.

“Imagine you are not able to communicate your wants, desires, what’s going on,” says Maheni John, director of nursing for Wholistic Services, which supports 80 people with intellectual or developmental disabilities. “You don’t have anybody that you know in sight, any familiar face. And anyone who comes into the room is fully gowned … It’s definitely a scary situation. So behaviors will tend to escalate because of that … and it really prolongs the hospitalization. But what choice? You know, what can we do?”

New York - State to Take Closer Look at Group Homes Amid Reports of COVID-19 Outbreaks
By Julia Ritchey, North Country Public Radio, May 18, 2020
Coronavirus outbreaks at nursing homes across New York have led to policy changes, but similar problems at state-licensed group homes for people with disabilities have gone largely unnoticed. 
A recent investigation by the CBS Albany affiliate showed close to 2,000 cases of COVID-19 at facilities overseen by the New York State Office for People with Developmental Disabilities (OPWDD) and 324 deaths. 

In the North Country, about 30 people contracted COVID-19 at a group home operated by United Helpers in Lisbon last month. And WWNY reported that outbreaks had occurred at two other facilities in St. Lawrence County, including 16 at the Cerebral Palsy Association of the North Country.

Asked for the state’s response, Gov. Cuomo on Friday said these facilities have additional obstacles due to their density.
"It’s the same with the nursing home, it’s the prison, it’s any congregant facility. There’s no doubt where you have a congregation of people, that is a place where the virus can transfer," he said.

Asked whether a staffing shortage was contributing to the problem, with reports of some operators using the same employees at multiple facilitates, Cuomo says he’ll look into it. 

"I don't know the policy at OPWDD, but we'll check what the staffing policy is and we'll check if there was a change," he said.

Illinois - ‘Our Residents are in Crisis’: In State-run Homes for Adults with Disabilities, COVID-19 Spread Quickly
By Jennifer Smith Richards and Jodi S. Cohen
Chicago Tribune, May 22, 2020
While much of the attention related to COVID-19’s impact on vulnerable populations has focused on deaths at nursing homes, infection rates are remarkably high in another kind of residential setting: state-operated centers for adults with cognitive or behavioral disabilities.

Of about 1,650 people who live in the seven developmental centers, which are scattered throughout the state, at least 355 have tested positive, or 21.5%. Eight residents have died, as have four workers.

Many Illinois adults with developmental disabilities live not in the state-run centers but in privately operated facilities as well as hundreds of group homes. The state recently began tracking cases in many of the midsize private facilities that often serve people with more significant medical needs and have suffered some severe outbreaks.
But the state says it isn’t tracking cases in smaller group homes, citing privacy issues. Some operators of these facilities, however, have spoken publicly about their efforts to contain the spread of the disease.

But community-based group homes have been susceptible to COVID-19 outbreaks too as living quarters typically are shared by several clients.

Because state data about COVID-19 outbreaks has been made public only for larger facilities that agreed to release the tallies, it’s difficult to know how widespread cases are in other residential settings for people with developmental disabilities.

New Jersey - Coronavirus Testing in Group Homes will Begin ‘Within the Next Few Weeks,' Murphy Spokesman Says
By Susan K. Livio, NJ Advance Media, May 13, 2020

All 8,000 people with developmental disabilities who live in state-licensed group homes and apartments in New Jersey and the employees who take care of them will all be tested for the coronavirus, a spokesman for Gov. Phil Murphy told NJ Advance Media on Wednesday night.

On Tuesday, Murphy and state Health Commissioner Judy Persichilli announced a major expansion of the state’s testing efforts, which included all nursing home residents and staff.

“And we must go further,” the governor said, acknowledging that people living in group homes were among the groups who needed priority attention.

Persichilli agreed, adding: “Any group home or congregate home where people can be together...we are going to be looking at and considering that high-risk"

The Murphy administration announced on April 23 that Rutgers University would conduct the testing of all 1,238 people living in the five state-run institutions known as developmental centers, and 4,300 state employees who work in them. Persichilli said on Tuesday that work had been completed.
According to the state Department of Human Services data supplied by the group home operators, 40 group home residents have died from the coronavirus and 452 residents have tested positive out of a population of about 8,000 in community housing.

Maine - Programs for Mainers with Disabilities Wonder When They Should Reopen — and If They’ll Survive
By Caitlin Andrews, Bangor Daily News, May 22. 2020
The groups that run day programs for those with intellectual disabilities and autism are wary of returning to normal operations as Maine begins to reopen without more detailed instructions from the state.

Since the coronavirus reached Maine in March, many of those organizations have had to switch to online options or close down completely for fear of people getting sick.

The state is almost a month into a gradual reopening of its economy, regularly rolling out new guidelines outlining how different kinds of businesses can restart.

But there have not yet been specific guidelines for the day programs designed to get clients with disabilities out into the community and allow them to have social interactions. Without that direction, some providers say they are uncomfortable with the idea of reopening, but also worry about their financial solvency the longer they wait.

Part of the challenge is how to navigate social distancing, said Rebecca Emmons, executive
director of Mobius Inc., which runs day programs and provides other services for people with disabilities in the Damariscotta area. Some of the organization’s clients require help to eat or use the bathroom — assistance that staff members cannot provide from six feet away. Some have underlying medical conditions that put them at particular risk for complications from the coronavirus.

“Until there is widespread testing and surveillance, we don’t have confidence that grouping high-risk people together would be safe,” she said, noting some individuals may have sensory issues that prevent them from being able to wear masks.
Transportation also presents challenges, said Ray Nagel, executive director of the Independence Association, which provides both residential services and community programming for people with intellectual disabilities in southern Maine.

Many clients attend day programs using public transportation, raising the possibility that someone could be exposed to the coronavirus while in transit, he said.

Harlem Woman
Helping Developmentally Disabled Adults through Coronavirus Crisis
By Gabrielle Fonrouge, NY Post, May 16, 2020
When the coronavirus struck the five boroughs, Mark and Heriberto, adults who struggle with intellectual and developmental disabilities, had no idea what to do.

Mark, 59, and Heriberto, 50, live independently in supportive housing and did not understand why so many people were dying when they watched TV. Their limitations left them grappling with social distancing and how to wear protective equipment like masks and gloves, and why they were even important.

Jannette Pinilla, who’s spent the last eight years providing daily care for them through her role as a direct support professional with non-profit Rising Ground, had the option to work from home and cancel her daily visits with the men but she knew she couldn’t do that.

“When this pandemic hit, my family automatically told me, ‘No, don’t go because you’ll put yourself and you’ll put us at risk,’” Pinilla, who shares her Harlem home with her 38-year-old daughter, 17-year-old niece, 40-year-old brother and 5-year-old grandson, told The Post.
“I said ‘They need me’ … I can’t see myself not being there for them.”

So Pinilla donned a mask and gloves, hopped on the train and never stopped making the 50-minute commute to Mark and Heriberto’s East Bronx apartment so she can guide them through the pandemic.

“I’m preparing them, explaining to them everyday … how to clean their mask … having them wear gloves, explaining to them why they have to wear the mask and gloves everyday, explaining to them about how to keep social distancing, showing them the distance they have to keep between them and someone else,” explained Pinilla, who has to break down the pandemic how-to’s each day she sees them.

Forget 24/7, It’s Now 24/30 — or longer — For Some Who Take Care of Developmentally Disabled: ‘Basically, We Are Their Family’
By Mark Brown, Chicago Sun-Times, May 12, 2020
Roosevelt Journigans hasn’t left his workplace in 30 days, and he just signed up to extend that streak to 45 days before he finally goes home again.

Journigans is among 120 employees of Trinity Services Inc. who during the COVID-19 pandemic have moved into residential facilities for developmentally disabled individuals in Illinois to reduce the risk of transmitting the disease.

Instead of eight or nine different staff members a day coming and going across three eight-hour shifts at the Joliet care home where he works, Journigans and two other women left their own homes behind to live 24/7 at the facility for a month.

“At first I wasn’t interested,” said Journigans, 63, who normally lives with his sister in Lockport. “It worked out pretty good.”

It’s quite a personal sacrifice, albeit one that comes with additional compensation of overtime pay and bonuses.

The sacrifice also is made easier by the special relationships that often exist between residents and workers.

“You develop bonds with them. I always worry about them. Basically, we are their family,” he said.
The so-called “stay in place” approach requires workers to cut themselves off physically from the community, almost as if they were working on an oil well at sea.

The idea is that the coronavirus cases plaguing nursing homes and other group living arrangements usually are brought into those settings by asymptomatic staff members who do not realize they are carrying the virus.

By reducing the number of people going in and out of a building, officials at Trinity hoped to limit the potential exposure to residents.

It appears to have worked. Only six individuals have tested positive for COVID-19 with just one death across Trinity’s 100 facilities housing 650 clients.


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]
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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