June 5, 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
National News:
Hospitals Told To Allow Visitors For Individuals With Disabilities
By Michelle Diament, Disability Scoop, June 10, 2020

In a move that advocates say has national implications, federal officials are clarifying that hospital no-visitor policies must have exceptions for needed support people for those with disabilities.

The U.S Department of Health and Human Services’ Office for Civil Rights said Tuesday that it reached a resolution with the state of Connecticut in a first-of-its-kind complaint filed by disability advocates. The complaint alleged that the state’s policies related to hospital visitors during the COVID-19 pandemic violated the Americans with Disabilities Act, Section 504 of the Rehabilitation Act and the Affordable Care Act.

Hospitals across the nation have instituted policies curtailing visitors in an effort to slow the spread of coronavirus. In some cases, advocates said that such policies lack needed exceptions for people with disabilities.

Related Story
Connecticut Hospitals Ordered to Allow Visitors for Patients With Disabilities
By Sheri Fink, New York Times, June 9, 2020
Connecticut’s top health official on Tuesday ordered hospitals that were barring visitors because of the coronavirus to make exceptions for patients with disabilities, after a complaint that the policy violated the civil rights of people who were unable to obtain adequate care for themselves.
A family member or care provider, the order says, may now accompany a patient who has a mental, intellectual or physical impairment and requires special assistance.

The change came after disability groups filed a complaint with the federal Office for Civil Rights, part of the Department of Health and Human Services, saying that the lack of visitation rights deprived some patients “of their right to make informed decisions and provide informed consent,” and subjected others “to the unnecessary use of physical and chemical restraints.”

Gov. Ned Lamont of Connecticut, a Democrat, said in a statement that the new policy, which
requires that hospitals provide protective equipment to those accompanying the patient, “implements vital safeguards for individuals with special needs to ensure proper and safe care is being provided and received in a hospital setting.”

Roger Severino, who directs the Office for Civil Rights, said in an interview that Connecticut’s order should serve as a model for other states. “People should not be left to fend for themselves when they can be reasonably accommodated,” he said. “The safety of patients with disabilities shouldn’t be pitted as if it’s a zero-sum game against the safety of others. Both can be protected.”

COVID-19 Infections And Deaths Are Higher Among Those With Intellectual Disabilities
By Joseph Shapiro, NPR - WNYC, June 9, 2020
People with intellectual disabilities and autism who contract COVID-19 die at higher rates than the rest of the population, according to an analysis by NPR of numbers obtained from two states that collect data. They also contract the virus at a higher rate, according to research looking into group homes across the United States.

In Pennsylvania, numbers obtained by NPR show that people with intellectual disabilities and autism who test positive for COVID-19 die at a rate about twice as high as other Pennsylvania residents who contract the illness.

In New York, the state with the most deaths from COVID-19, people with developmental disabilities die at a rate 2.5 times the rate of others who contract the virus.
The numbers in Pennsylvania are compiled by the Office of Developmental Programs of the Pennsylvania Department of Human Services and count people who get state services while living in group homes, state institutions or in their own homes. As of June 2, there were 801 confirmed cases and 113 deaths among people with intellectual disabilities and autism. In New York, NPR calculated data obtained from the New York State Office for People with Developmental Disabilities. Of people who get state services from that office, 2,289 have tested positive for COVID-19 and 368 have died.

The high rate of death "is disturbing, but it's not surprising," says Scott Landes, an associate professor of sociology at Syracuse University's Maxwell School of Citizenship and Public Affairs.
He's been collecting his own data from state and private research groups and says people with developmental disabilities who live in group homes have some of the highest death rates from COVID-19 in the country.

"They're more likely — four times more likely, we're showing — to actually contract COVID-19 than the general population," he says. "And then if they do contract COVID-19, what we're seeing is they're about two times more likely to die from it."

Trump Administration Releases Aid For Disability Service Providers
By Michelle Diament, Disability Scoop, June 11, 2020
Amid questions about delays, the Trump administration is sending billions of dollars in aid to disability providers and others funded by Medicaid who have been hard hit by the pandemic.

The U.S. Department of Health and Human Services said this week that some $15 billion will go toward providers serving individuals covered by Medicaid and the Children’s Health Insurance Program, including home- and community-based services providers.

The money is part of the $175 billion Public Health and Social Services Emergency Fund that federal lawmakers created in a pair of coronavirus relief bills earlier this year to help health care providers.
While HHS has already distributed billions of dollars from the fund, little has gone toward providers funded primarily by Medicaid.

That has drawn the ire of disability advocates and lawmakers alike. Just last week, a bipartisan group of congressional leaders wrote to HHS Secretary Alex Azar to inquire about the holdup.

Related Story
HHS to Release $15B in COVID-19 Relief Funds to Medicaid Providers
By Alex Spanko, Skilled Nursing News June 9, 2020

The federal government on Tuesday announced a long-awaited tranche of financial relief for providers that rely solely on Medicaid reimbursements, setting aside $15 billion.

The Department of Health and Human Services (HHS) will release the funds to Medicaid providers that did not receive payments from the initial $50 billion in general allocations from the Provider Relief Fund, an initiative of the CARES Act that has already distributed billions to health care providers based on their historical Medicare reimbursements.

“Health care providers who focus on treating the most vulnerable Americans, including low-income and minority patients, are absolutely essential to our fight against COVID-19,” HHS secretary Alex Azar said in a statement. “HHS is using funds from Congress, secured by President Trump, to provide new targeted help for America’s safety-net providers and clinicians who treat millions of Medicaid beneficiaries.”

Beginning Wednesday, Medicaid providers can use an HHS portal to submit an application for funding, which will start at 2% of reported gross revenue for patient care; HHS will use other information, including the number of Medicaid residents served, to determine the final amount.

State News:
New York - Covid-19 Kills Hundreds in Group Homes for Developmentally Disabled in N.Y.
By Dan Herbeck, Buffalo News, June 8, 2020
On the best of days, Beth Kuerzdoerfer worries about her daughter, Grace Lipczynski, who lives in a group home for the developmentally disabled in North Buffalo.

Lipczynski, 22, who cannot talk, walk, wash, brush her teeth or toilet herself, depends on workers at the People Inc. home on Hertel Avenue for her very life. She is nourished through a feeding tube.

Her mom calls her “Amazing Grace” because all of the medical challenges she has faced since birth, including cerebral palsy, epilepsy, osteoporosis and a deformed spine.

The Covid-19 pandemic has given Kuerzdoerfer even more reasons to worry about her daughter.

Since March, 2,160 group home residents and 2,599 group home employees in New York have been infected with Covid-19, according to the State Office for People With Developmental Disabilities, which regulates the homes.

Covid-19 has killed 352 of those residents, the state agency said. It has not released figures for how many group home employees have died.
“Every day, I worry that Grace is going to catch the virus, or one of the people who takes care of her is going to catch it and bring it into the home,” Kuerzdoerfer said. “And I can’t visit her right now. It scares the living hell out of me.”

Across the state, 38,000 women and men live in 7,250 group homes monitored by the OPWDD. At least 4,000 of these individuals are in Western New York.

The state agency said it could not provide a breakdown of infections or deaths based on individual homes, counties or regions where they occurred.

Covid-19 has made life more complicated – and dangerous – for the residents and the workers who care for them. Many group home residents are especially susceptible to Covid-19 because they suffer from respiratory illnesses, diabetes or other underlying medical conditions.

Ohio - Outdoor Visitations Begin at Assisted Living & Intermediate Care Facilities
By Danielle Malagarie, Dayton 24/7 NOW, June 8 2020
Outdoor visits at assisted living facilities and intermediate care facilities, that care for those with developmental disabilities, started Monday in Ohio. However, this still does not include nursing homes.

Governor Mile DeWine said each facility can come up with how to best implement outdoor visits. DeWine outlined several safety standards to help keep residents safe.

Here are the mandatory precautions:
  • Visitors should be permitted for outdoor visitation only, so long as all safety standards are met.
  • Facilities should consider all implications for resident physical and mental well-being when determining when to allow facility and personal visitation decisions.
  • Visitation practices should be developed that include, at a minimum, limiting visits, creating a screening process for visitors, and using sign-in sheets to track visitors.
  • Providers should educate residents on the risks of the spread of COVID-19 when interacting with visitors, and the appropriate/applicable safety precautions.
  • Providers must educate families, friends, and other visitors of the risks of the spread of COVID-19 and the potential health impact for not just their loved one, but all residents of the home.
  • Facilities are encouraged to maintain, and in some cases enhance, virtual options to augment visitation. Examples include FaceTime, Skype, and Zoom.
  • Each facility can determine how to best implement outdoor visitations for their residents in a way that works best for them.

Ken Scribner, Randall Residence of Centerville’s executive director, said they also have COVID testing kits now.

“We didn’t have it in March and April,” said Scribner.

Scribner said during that time families got created by doing video and window visits, but nothing compares to this.

Georgia - Proposed Community Health Cuts Spark Discussion on Health Disparities, Lack of Disability Aid
By Nyamekye Daniel, The Center Square, June 8, 2020
Georgia lawmakers came face to face Monday with the people behind budget cuts at a committee meeting focused on spending reductions for community health.

Phil and Lisa Woody took to the state Capitol from their home in Dunwoody to urge lawmakers not to approve the proposed cuts to a Medicaid waiver program that supports people with intellectual or developmental disabilities.

The couple's son, Evan Woody, has a traumatic brain injury, epidural hematoma – bleeding around the brain – that is "the size of a tennis ball."

Evan is nonverbal and has brain functions similar to a 3-year old. Phil and Lisa take care of his daily tasks such as bathing, shaving and dressing. Lisa gets up with him three times a night.

"As you know, having community services can cost families from $20,000 to $60,000 per year for the rest of their children's lives," Phil Woody told members of the Senate Appropriations Committee's Community Health Subcommittee as Lisa Woody held on to Evan.
Families such as the Woodys depend on NOW and COMP Waiver Programs for employment support and residential services, specialized medical equipment and supplies, vehicle adaptation and other support services.

The Department of Behavioral Health and Developmental Disabilities has recommended cutting 100 new waivers for fiscal year 2021 as part of its 11 percent spending reduction required for all state agencies.

Phil Woody said the cuts to the waiver program could have a rippling effect.

"The impact of dropping the family support services' safety net for those waiting for waivers has the potential to increase physical, emotional and financial abuse, homelessness, sex trafficking, abandonment and the loss of jobs for family caregivers who can't afford outside help," he said.

Pennsylvania & New Jersey - Elwyn, a 168-year-old Lifeline for Many Families, is Struggling under Financial Strain
By Harold Brubaker, The Philadelphia Inquirer, June 5, 2020

When Elwyn was founded in Germantown in 1852, as the Pennsylvania Training School for Idiotic and Feeble-Minded Children, it was well ahead of its time, teaching intellectually disabled children skills they could use in the community.

The large human services nonprofit has become a lifeline and a beacon of hope for thousands of parents and families of those with autism and other developmental disabilities.

But the 168-year-old institution is also facing a moment of financial reckoning as it struggles to keep up in challenging times.

Elwyn, which employs more than 5,000 people, lost money in the last three years. It looks set to lose millions of dollars again this year. Its biggest challenge has been adapting as states change the way they pay groups such as Elwyn.

On top of that comes the coronavirus pandemic, which has wreaked havoc on the U.S. economy and made it harder for Elwyn to renew a $45 million line of credit it really needs to sustain its operations.

“The pressure on Elwyn has materially increased as a result of COVID-19,” Charles S. McLister, Elwyn’s chief executive, said on a conference call with bond investors on May 18. “We recognize how challenging it will be in the lending market, particularly in the health-care industry, given the volatility and uncertainty that the pandemic has produced.”

Elwyn served 24,107 people last year, including 1,032 in group homes or other residential settings — not including a behavioral health nonprofit acquired in late 2018.

“What’s happened is the market has evolved around Elwyn, but Elwyn hasn’t really evolved its practices, its technology, and we’re really feeling the impact of that,” McLister said in an interview earlier this year. The depth of the problem was not apparent until early last year, he said.

Elwyn’s biggest troubles are in New Jersey, which last year changed the way it pays for services. If that subsidiary can’t be fixed within a year, Elwyn will exit those operations rather than endanger the rest of the business, McLister said. If it came to that, Elwyn said, it would work with the state to ensure that the residents could stay in their homes.

New Jersey, where Elwyn operates 51 group homes, is the latest state to switch to the new reimbursement model that has caused Elwyn to stumble. McLister said a significant portion of Elwyn’s $11.6 million operating loss in fiscal 2019, came from its inability to collect what it was owed in New Jersey.

Iowa is Moving to Transfer People with Disabilities from State ICFs to Community Facilities
By Tony Leys, Des Moines Register, June 5, 2020
Iowa is renewing efforts to move eligible residents from its institutions for people with disabilities to smaller facilities in communities.

The Iowa Department of Human Services released a plan Friday under which it will seek alternatives for some people who live at its Glenwood and Woodward Resource Centers. The two centers care for more than 300 adults with severe intellectual disabilities.

The move is partly in response to allegations of poor medical care and other problems at the Glenwood facility, which is under investigation by the U.S. Department of Justice.

Department Director Kelly Garcia said in an interview that the new plan is not a step toward closing either institution. She said she has no specific number of residents she wants to move out.

She pledged that the state would not repeat what happened in 2015, when then-Gov. Terry Branstad abruptly closed two of Iowa’s four state mental hospitals. The department sent some of the hospitals’ former residents to nursing homes with poor safety records, where three of them died within weeks of moving.

“That’s certainly not what’s going to happen here,” Garcia said.
She said Gov. Kim Reynolds supports her plan to keep the Glenwood and Woodward institutions open while shifting their emphases and paring the number of people living in them.

Current residents of the facilities will not be forced to move out, Garcia said. Some of the residents have lived there for decades and are now elderly. She understands why they and their families would be leery of a move now.

“We have to work with individuals, their guardians, their family members and their planning teams, all of whom know our residents best,” she said.

The state has been reducing the number of residents at the institutions for years, from 496 in 2010 to 322 now.

Garcia said her department intends to encourage more residents to transfer to community placements and plans to admit fewer new residents. About a dozen current residents of the institutions already have indicated they would prefer to live in communities, she said.

California - If Budget Represents our Values, We Must Protect California’s Most Vulnerable
By Jim Frazier, CAL Matters

When California’s economy is strong, like it was in January, passing the state’s annual budget was a pleasant responsibility. Ample tax dollars and a significant surplus meant that most policy priorities received funding and those programs warranting increases received them.

However, with California now facing near record unemployment and the state’s surplus now in deficit, budgeting becomes a more solemn exercise. What’s before us today is a statement of our collective values and priorities.

In his May Budget Revise, Gov. Gavin Newsom reduced his initial $222 billion January budget to $203 billion. The reduction is a testament to the economic havoc wrought by COVID-19.

The administration’s revised budget would cut $500 million to Medicaid-funded intellectual and developmental disabilities services unless Congress passes additional aid to states, and that federal legislation specifically allocates further federal Medicaid funds to California. These cuts would devastate the more than 350,000 Californians with intellectual and developmental disabilities and their families.
For two decades, California has underfunded the developmental disability system. Prior to the COVID-19 pandemic, a state rate study identified a funding gap of more than $1.4 billion for disability programs. The COVID-19 public health crisis has made this problem worse, significantly increasing the cost of safely delivering services to those with developmental disabilities. 

Newsom has said that budgets represent a statement of our values. I agree. As the Newsom administration and the Legislature enter the final stretch of budget negotiations, our state leaders must make a commitment to protect vital support services for those populations who need them most but cannot advocate for themselves.  

Protecting individuals with intellectual and developmental disabilities is personal. I chair the Select Committee on Intellectual and Developmental Disabilities, where we work diligently to shine a light on the population of people with intellectual and developmental disabilities, one of the most underserved groups in California.

The administration’s proposed cuts threaten the stability of Medicaid-funded provider services that keep people with intellectual and developmental disabilities safe and healthy during normal times, made all the more important during the COVID-19 pandemic.

According to the Centers for Disease Control and Prevention, Californians with developmental disabilities are at higher risk for COVID-19 infection and complications. Maintaining the essential safety net of services, equipped to meet their unique needs, should be a priority for state funding during this public health crisis. 

Before COVID-19, many children and adults with disabilities were on waitlists for services and housing. More than 28,000 programs have closed during the last decade. All too frequently, the staff providing essential services are paid poverty-level wages.

Pandemic Hits Forgotten Profession: Special-Needs Careworkers
By Alistair MacDonald, Wall Street Journal, June 11, 2020
Darius Stewart, who provides care for people with special needs such as autism and Down syndrome, hasn’t left the residential home where he works since late April.

All three employees and four residents of the Silver Spring, Md., home had tested positive for the new coronavirus. After 14-hour shifts, Mr. Stewart said, he watches television news and sees nurses, doctors, retail workers and others being singled out for praise. The 28-year-old wonders why his profession never seems to get a mention.
“We are barely even recognized as health-care workers,” he said.

An estimated 1.3 million so-called direct-support professionals like Mr. Stewart care for people with special needs in the U.S. Earning less than half the national average wage, they work in centers and residential homes, feeding, bathing and monitoring the well-being of vulnerable residents.

The pandemic has weighed heavily on these centers. People with special needs often find it difficult to maintain social distancing and struggle to understand how the health crisis is changing their lives. They are dying from the virus at a higher rate than the wider population, according to data from two states, increasing the trauma for both residents and those who care for them.

In one of the many ways the virus is reshaping the world of work, these pressures are fueling concerns among employers of a coming recruitment crisis in a sector that has always had high turnover rates.

Despite high U.S. unemployment, there are already signs of stress for staffing, with workers demoralized by low pay, and what many see as a lack of professional recognition, said Joseph Macbeth, president of the National Alliance for Direct Support Professionals Inc., a trade organization. Residential homes have struggled with staffing amid infections, and those employees who stay are working long hours, homeowners say, sometimes six days a week.

At the care home where she works in Warren, N.J., Deidra Fransaw helps wash, dress and feed the residents. She also administers medicine and oversees activities.

She talked of her fondness for the residents, in particular one man with Down syndrome. She would often put music on and dance with him. At night, they watched the news together.

Because of social distancing, the two can no longer dance. The home also no longer allows residents to watch the news, as the evening reports were confusing and depressing for some residents. Ms. Fransaw’s occasional dance partner, like all other residents, must now remain in his room.

“He just doesn’t understand,” she said.

On April 15, Ms. Fransaw arrived at work to be told that a colleague had died of coronavirus. She left that day and didn’t return for three weeks.

“I was on the verge of breakdown. I was crying all the time. I could not sleep,” she said.


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]
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. 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.)
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