June 19, 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 & YOU:
VOR Board of Directors
Adds New Members, Elects New Officers

Earlier this year, VOR members voted by proxy ballots to add six new members to the Board of Dircectors. Three of those members had held the position provisionally, their status pending affirmation by a quorum of votes by the membership. The six new members were added at a Board of Directors meeting on Wednesday.

On Thursday, Board members voted on a slate of officers for the Board of Directors. Sam Friedman, of New Jersey, was elected President. Joanne St. Amand, also of New Jersey, will continue to serve as VOR's 1st Vice President. Joanne served as President of VOR from 2017 - 2019. Our new 2nd Vice President is Rita Hoover, of Arkansas. Terry Lafleur of Louisiana will continue to serve as Secretary, and Steve Wallace of Texas will remain Treasurer.

The complete roster of VOR's Board of Directors may be viewed at:


We proudly welcome VOR's new directors and officers, and offer our deepest gratitude to all who support our mission through their service!
National News:
Patients with Underlying Conditions were 12 Times as Likely to Die of COVID-19 as Otherwise Healthy People, CDC Finds
By Lena H. Sun, Washington Post, June 15, 2020
People with underlying medical conditions such as heart disease and diabetes were hospitalized six times as often as otherwise healthy individuals infected with the novel coronavirus during the first four months of the pandemic, and they died 12 times as often, according to a federal health report Monday.

The Centers for Disease Control and Prevention released data on more than 1.7 million coronavirus cases and 103,700 deaths from covid-19, the disease caused by the virus, reported to the agency from state and territorial health departments from Jan. 22 through May 30. The data is consistent with earlier reports showing the disproportionate impact the pandemic has had on people with underlying medical conditions. The report also highlighted the disease’s stark disparities between whites and minority groups.

As states reopen, and with reports of surges in infections, the report offers more details about the groups most vulnerable to illness and death based on four months of data.
In Monday’s report, the CDC said the most common underlying conditions reported in people with covid-19 were heart disease (32 percent), diabetes (30 percent) and chronic lung disease (18 percent). Other preexisting conditions included liver disease, kidney disease, neurodevelopmental or intellectual disability, and immunocompromised conditions.

Although the disease is typically more severe among older people, people of any age with underlying medical conditions are at increased risk if they contract the virus, for which there is no vaccine and only limited drug treatment.


CDC Releases Updated Consolidated COVID-19 Testing Recommendations
CDC Media Release, June 15, 2020

The Centers for Disease Control and Prevention (CDC) has released consolidated recommendations for COVID-19 testing, including interim testing guidelines for nursing home residents and healthcare personnel, as well as testing strategy options for high-density critical infrastructure workplaces after a COVID-19 case is identified. These recommendations compile and update previous testing guidance.

Testing Guidelines for Nursing Homes is an important addition to other infection prevention and control (IPC) recommendations aimed at keeping COVID-19 out of nursing homes (as well as other long-term care facilities), detecting cases quickly if they do occur, and stopping further transmission in these facilities. Nursing home residents are at high risk for infection, serious illness, and death from the disease. Updated recommendations include recommendation against testing the same individual more than once in a 24-hour period; consideration for testing residents with symptoms for other causes of respiratory illness, such as influenza; and coordination of repeat testing in response to outbreaks with local, territorial, and state health departments.

The consolidated recommendations for testing, Overview of Testing for SARS-CoV-2, were developed based on what is currently known about COVID-19 and are subject to change as additional information becomes available. This document includes a summary of current CDC recommendations for testing people who
  • have signs or symptoms of COVID-19;
  • have no symptoms but recently had contact with someone known or suspected to have COVID-19;
  • have no symptoms and no known contact with someone known or suspected to have COVID-19 but still may be tested for early identification in special settings;
  • have had confirmed COVID-19 but no longer have symptoms; and
  • may be tested by public health officials to track spread of the virus that causes COVID-19.
Senate Proposal Seeks Protections For Family Caregivers
By Michelle Diament, Disability Scoop, June 15, 2020

Employers would be barred from discriminating against workers who care for family members with developmental disabilities or other special needs under a new federal bill.

Legislation introduced this month in the U.S. Senate would prohibit employers from refusing to hire an applicant or taking “adverse action” against an employee — including firing, demoting or mistreating them — because of their caregiving responsibilities.

The measure would also make it unlawful for an employer to retaliate against workers who want the protections enforced and it would create a grant program to support efforts to prevent discrimination against family caregivers.

“The support and services family caregivers provide their loved ones are critical in maintaining their well-being,” said Sen. Cory Booker, D-N.J., who introduced the bill. “Most family caregivers are employed and work to balance the responsibilities of their job while also providing that care. It is unacceptable that workers are being discriminated against simply because they have responsibilities outside of the workplace.”

The bill known as the Protecting Family Caregivers from Discrimination Act, or S. 3878, would establish protections for spouses, parents, grandparents, siblings and others who care for a relative of any age with special needs.

State News:
Connecticut - At Southbury Training School, the Hard Work Goes On
By Lenese Robinson, Hartford Courant, June 18, 2020
It’s been months since those of us working at the Southbury Training School got serious about the threat COVID-19 poses to our 200 residents, and to us.

Now, despite the temptation to relax, we have to dig in and stay on course. There’s no clear end in sight.

For Southbury residents, who have intellectual and physical disabilities, COVID-19 has brought a change in routines and a more confined life. We have to keep them apart from one another. All the day programs and field trips have been suspended. Their families are unable to visit. The residents’ ability to understand what’s going on and comply with the needed safety precautions differs, and because of that, many do not wear the protective masks.

It’s a hard adjustment for our residents, who range in age from their late 40s to 90s. Keeping their lives steady despite this disruption is the work of a well-trained, caring and dedicated staff, 24 hours a day. I’ve been at Southbury for 27 years, and like many on staff, I have known the residents for decades. We can tell when residents are getting sick because we know their tendencies, which is even more critical now that we must watch for any signs of COVID-19.

Nevertheless, there’s only so much quarantine you can stand. Unlike the people we care for, those of us who work at Southbury can get out and go home to our families. That’s why we work so hard to help the residents cope and feel comfortable.
But it’s scary. You’re going to work every single day knowing you can take this virus home. It’s ridiculous to think that it can’t happen to you.

At work, I have lost three co-workers to COVID-19, all people I knew personally. Fortunately, we’ve had only 20 COVID-19 cases among our residents, a number that could have been much worse if we hadn’t implemented firm procedures quickly. We have to recognize it’s the success of these procedures that have limited the number of cases we have seen, and they must be continued.
As this got worse, there haven’t been a bunch of people reporting sick or in need of time off because of the extra strain on them and their families brought on by COVID-19. But the chance of catching the virus is always on our minds.

I’ve got a strict routine at home. When I get back from work, I strip off my clothes outside on our porch, and I have a dip to sanitize my shoes. I know what it’s like to be touched by the virus.

Three people in my family were stricken, and only through the grace of God have they all survived.

At Southbury, we have staff members who recovered from COVID-19 and returned to work. It is far too simple to say this is our job and that is why we are here.

Virginia Looks to Reopen Nursing Homes and State Hospitals
By Luanne Rife, Roanoke Times, June 18, 2020

Overnight, the number of deaths linked to long-term care facilities jumped by 40 to 945, and yet the total count of COVID-19 fatalities in Virginia rose by only three on Thursday.

No explanation was given with the reporting data. For Martha Bryant, whose only surviving triplet son needs round-the-clock skilled nursing care, nothing about the way Virginia has handled the virus in long-term care has been clear and transparent.

Bryant, who tunes in to Gov. Ralph Northam’s virus briefings, keeps waiting for word on when all of the residents of homes will be tested and when there might be a reopening plan. Northam didn’t mention long-term care during Thursday’s briefing. He rarely has since appointing a task force in April, a month into the spread of the disease. As of Thursday, 60% of Virginia’s 1,586 deaths came from nursing homes and assisted living facilities.

“What gets me and actually makes me angry would be when [Public Safety Secretary] Brian Moran could get up there and tell you all about the prisons and they had so many cases at Buckingham and whatever, and Dr. Forlano would get up there and say, ‘Well, we can’t tell you. No we aren’t going to tell you.’ It was like night and day,” she said. Laurie Forlano heads the governor’s long-term care task force.

Bryant said she watched as testing first was scarce and then became available for prisons and then high-risk neighborhoods and meat packers.

“I told the health director at Hiram Davis, your workers are just as valuable as a poultry worker,” she said.
Bryant said she was told this week that testing would be done at her son’s home at Hiram W. Davis Medical Center on June 24.


Note: Martha Bryant testified hearings before the House Judiciary Committee in March, 2018, along with VOR Members Peter Kinzler and Caroline Lahrmann.
Pennsylvania - Opinion: Governor Wolf’s Dangerous Disability Agenda
By John Hirschauer, National Review, June 15, 2020
In Pennsylvania, the governor and self-appointed advocates for the disabled are pursuing an agenda that will only hurt the state’s most vulnerable.

Since taking office in 2015, Pennsylvania governor Tom Wolf has pursued a radical deinstitutionalization agenda. His administration’s Department of Human Services (DHS) has allied itself with various “community-living” advocacy organizations that, in tandem with allies in the academy, have sought to transform the state’s mental-health and disability-services system. These state and private actors have pushed for the transfer of people with disabilities out of residential institutions and into “community-based” settings, a move that they pursue with or without the consent of affected individuals or their guardians.

[I]n 2019, [Wolf's] DHS announced the forcible closure of two residential facilities that house over 300 intellectually disabled Pennsylvanians. Families of the residents mobilized to oppose the closure and succeeded in getting a bill passed through both chambers of the state legislature that placed a moratorium on the closures. A staff member at one of the centers told National Review at the time that one of the intellectually disabled residents, upon hearing of the closure, wheeled himself to the administration building every day and cried. Wolf vetoed the bill, and both centers are still slated to close.

The latest development in this ongoing disability revolution came when lawmakers in the Pennsylvania House of Representatives passed House Bill 1363, a “bill of rights for individuals with intellectual disabilities.”
That bill, on its way to the Pennsylvania Senate, again imperils the most disabled members of the Commonwealth under the guise of “civil rights.”

Several passages in the bill are problematic for the severely and profoundly disabled. Two of the bill’s provisions take direct aim at the concept of guardianship for people with disabilities. The first is a statement of principle for all future disability policy:

Individuals with intellectual disabilities or autism and, if chosen by the individual, their families or legal guardians are instrumental decision makers regarding the services and supports the individuals receive and inform policies and programs which affect the lives of the individuals and their families.

The second discusses the provision of “community-based” services.

If the individual so chooses, family members and legal guardians of an individual with intellectual disabilities or autism shall be involved in meetings regarding the planning for and arrangement of supports and services or other allowable services.

These passages raise an important question: How are we to know what a nonverbal or severely disabled individual “chooses” about the role of his guardian in the planning of his supports and services?

Oregon - Two Men from Group Homes for people with Disabilities Dead from Coronavirus as Advocates Point to Problems
By Fedor Zarkhin, The Oregonian, June 18, 2020
Two men who lived in state-regulated homes for people with intellectual and developmental disabilities died from the coronavirus this month, state officials said.

The deaths reflect the epidemic’s escalating incursion into the network of nearly 2,400 such homes in Oregon. There are now 55 total cases across 32 group homes for adults and children, up from 10 cases in 10 homes two months ago. Two-thirds of all infections are staff and the rest are residents. No children have been infected.

One of the men who died lived in Clackamas County and the other lived in Marion County, a department spokeswoman said. They were 68 and 70 years old and both died in hospitals.

“We’re very saddened by these deaths,” said Lilia Teninty, who oversees the Oregon Department of Human Services division that regulates the homes. The numbers reflect growing case counts across the state in the general population, she said.
Relative to how many group homes there are, the infection and death numbers are low, said Toni Larson, Oregon’s ombudsman for people in the homes. But she said she’s concerned cases will grow as the state reopens.

“Of course, I’m holding my breath a little bit,” Larson said.

About 6,500 people live in child and adult group homes for people with intellectual and developmental disabilities, according to state data, about 550 of them children.

Marion County has the bulk of coronavirus cases – 30 infections in 19 homes.

Oklahoma - Long-Term Care Facilities May Begin Allowing Visitors
By Kim McConnel, Lawton Constitution, June 14, 2020

Long-term care facilities may begin a three-phased approach to reopening to the public on Monday, under an amended executive order issued Friday by Gov. Kevin Stitt.

Health care experts say most Oklahoma facilities are in Phase 3, the least restrictive phase that would allow limited visitation for most residents.

Nursing and skill nursing facilities, assisted living, adult day care, residential care and intermediate care facilities for individuals with developmental or intellectual disabilities have been closed to most visitors since March, when the State of Oklahoma began implementing orders designed to stem the spread of COVID-19. Stitt amended his initial order in late April, allowing for a three-phased reopening for most businesses and activities. Phase 3, the least restrictive, began June 1.

However, that Open Up and Recover Safely specifically excluded senior living facilities and hospitals, and continues to encourage members of vulnerable populations — those with health issues and those over the age of 65 — to take precautions that would keep them safe from COVID-19, to include continued quarantine or limited interaction with those outside their homes.

The Open Up and Recover Safely Plan had been staged to move from one phase to the next every 14 days, as long as hospitalizations and COVID-19 incident rates remained at manageable levels, meaning the state’s health care system can handle them. June 15 marks two weeks from the beginning of Phase 3.

New York - How Remote Learning Upended NYC Students With Disabilities and Their Families
By Alex Zimmerman, Chalkbeat; with Lauren Costantino, Rebekah Ward, Veronica Penney, and Yoav Gonen, THE CITY, Jun 17, 2020
When the nation’s largest school system announced on March 15 that 1,800 public schools would shift to remote teaching amid the coronavirus pandemic, it turned the education of 1.1 million students upside down.

But within that seismic disruption are roughly 228,000 children with disabilities who are at greatest risk of being knocked off track because they’re missing out on vital supports that range from challenging to near-impossible to provide virtually.

With the logistical complexity of remote instruction in mind, city and state officials in April allowed for special education services to be modified or scaled back.

At the same time, parents have been forced to morph into de facto educators, speech therapists, and counselors — all while juggling the economic and emotional fallout of living through an unprecedented pandemic.

There is still plenty of uncertainty about how students with disabilities will fare once they return to school buildings and how much ground will have been lost. Also unclear is when New York City special education students might make it back to classrooms.

Earlier this month, Gov. Andrew Cuomo issued an executive order allowing in-person special education services to resume this summer if districts opt in.

In the meantime, Chalkbeat and THE CITY teamed up to examine the mix of rare perks and more commonplace pitfalls of online education for students with disabilities.

Based on interviews with dozens of parents and educators, here are a range of snapshots of how students, their families, and teachers are faring:
Before the city went into lockdown, Matthew Landfield’s son adored going to his Brooklyn middle school. But after a little over a week of remote learning, the child was frustrated, anxious, and ready to quit.

Landfield and his wife decided to reach out to their son’s school for help.

“He was to the point of tears saying, ‘I can’t do this,’” Landfield said. “It didn’t make sense to us that this child who adored his school a week ago would now want to drop out in the middle of the year.”

At the beginning of remote learning, Landfield’s class schedule looked a lot like the regular one, but shorter: up to eight classes per day, followed by office hours with teachers and homework due later that night.

‘He relies on his teachers a lot in person.’

The intense all-day schedule was not working for Landfield’s son, who struggles with organization and time management issues. The multiple shortened class periods made it difficult to absorb information and understand exact expectations.
“He relies on his teachers a lot in person — either through class interaction or after-school support — to get a lot of his learning,” Landfield said.

Eventually, never-ending email notifications became overwhelming.

“The digital environment was like an avalanche of alerts and emails and deadlines and assignments,” he said.

Related Story:
New York - Despite Cuomo's Approval, Some Children with Special Needs Will Not Receive In-Person Services This Summer
By Swapna Venugopal Ramaswamy, Rockland/Westchester Journal News, June 18. 2020

After the initial euphoria upon learning that her child with severe disabilities could receive in-person services at school over the summer, Shelly Guzman had a sinking feeling when she read Gov. Andrew Cuomo’s executive order issued on June 5.

“Special education services and instruction required under Federal, state and local laws may be provided in person for the summer term in school districts,” it said.

“I was worried that the school districts would use the word ‘may’ to get out of offering the services. It didn’t say must,” said Guzman, who lives in Washingtonville, Orange County, and whose 6-year-old daughter, Faith, is severely autistic and non-verbal and attends school in Rockland County. “It was a loophole.”

Her fears were not unfounded.

Last week, Rockland BOCES informed parents that in-person services will not be provided this summer. Rockland BOCES provides what's known as "extended school year" services for between 550 and 600 students from all eight school districts in Rockland County, as well as some school districts in Westchester, Orange, Putnam and Dutchess counties.

Transitioning to remote learning has been a struggle for many students since schools closed in March. For most students with special needs — who get a variety of in-person services — online learning has not been an effective option.

For months, parents of children with special needs who qualify for summer services had pleaded with Cuomo to open schools for in-person services. Extended school year services are offered to students whose needs are determined to be “highly intensive and require a high degree of individualized attention and intervention” or students who have “severe multiple disabilities."

VOR ❤️ OUR DIRECT SUPPORT PROFESSIONALS!

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

VOR OPPOSES:

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 SUPPORTS:

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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