November 25, 2020
Happy Thanksgiving from VOR!
VOR Weekly News Update
VOR is a national non-profit organization that advocates for
high quality care and human rights for all people with
intellectual and developmental disabilities.
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
VOR & You:
Happy Thanksgiving!
Please Stay Safe and
Protect Our Loved Ones and their ICF Homes
The COVID-19 Virus is back. As we all know, people with IDD in long-term care facilities have been one of the hardest hit populations during the pandemic. Larger congregate care facilities are not alone in being overrun with cases, but states have reported infections and death in ICFs far more openly and accurately than the cases of COVID-19 in group homes. As a result, opponents of ICF care have used those numbers to call for closing our facilities. (For an example, just see the article on South Carolina in this edition)

We wish you a happy holiday, but hope that you will do your best to protect your family members with IDD, protect our ICFs, protect the Direct Support Professionals and care staff who work with our loved ones, and (of course) protect yourselves in the months ahead.

The article below expresses the need to balance safety with the need to see those we care about. Still, this is a personal decision that each of us must make for ourselves and our families.
The Holidays Without My Brother:
The Impact of COVID-19 on People with Intellectual Disabilities
By Diane Morrow-Kondos, Tulsa Kids, November 23, 2020
I won’t be seeing my brother at Thanksgiving. I haven’t seen him since his home went on lockdown on March 18th because of COVID-19. I knew the facility would be temporarily going on lockdown, so I took him on a shopping trip and picnic the day before the closure. When I settled him back in his room and hugged him goodbye, I assumed I would see him in a month, maybe two months at the most. The virus would be contained quickly, and we would resume our regular lives, I assured myself. I wistfully look back at my naïve, blissful ignorance.

My brother is 57 years old, but his IQ places him around the understanding level of a five-year-old, maybe younger. He lives in what is called an Intermediate Care Facility. My parents have been deceased for over ten years now, and I am grateful they found a home before they died where my brother is content. His needs are more than I can handle on my own, and there is over a ten-year waiting list for in-home services in Oklahoma. The excellent providers and other residents in his home have become, in essence, his family. He is safe, and he is loved. I am thankful.

Yet, on that day in March when I left him, I never dreamed it would be over eight months and counting until I saw him again. I mail him cards and packages, and my friends have been kind enough to add to his stream of eagerly anticipated mail. When we talk on the phone, he always asks in his stilted communication, “When, coming up?” I repeatedly explain to him in the simplest terms that I cannot visit because of a sickness going around the world. My brother has had COVID-19, several of the staff members have had COVID-19, but he still doesn’t fully understand. He only knows his sister is not visiting, not taking him shopping, not taking him out for pizza and ice cream. He only knows that for some reason, he is not coming home for the holidays, and he worries if Santa will find him. Every night when we talk, it breaks my heart over and over and over again.
My heart is breaking, but my head knows he is in the safest and best place. The death rate for people with intellectual disabilities is three times the rate as others with COVID-19. There are many reasons for this increased risk. First, many are already medically fragile with underlying health conditions such as respiratory problems. These issues make them more susceptible to pneumonia. My brother has had two hospitalizations in the last ten years for pneumonia, a condition that places him at a higher risk for having a severe case of COVID-19. People with Down Syndrome are more vulnerable to COVID-19 because they are more likely to have congenital heart defects. They may also have low muscle tone around their neck and have a larger tongue, creating a risk for choking and subsequently developing lung infections.

Another factor that places people with intellectual disabilities at risk for getting COVID-19 is that they are more likely to live in group homes or facilities, exposing them to more people. Between 16 and 20 percent of people with intellectual and developmental disabilities live in congregate settings. They’re also at higher risk because they often require care from aides or therapists, making physical proximity necessary.
Facility Establishes ‘Hug Tent’ to Safely Reunite Residents, Families
By Danielle Brown, McKnight's Long-Term Care News, November 18, 2020

Where there’s a will, there’s a way. And long-term providers are making a way for families and other visitors to safely visit residents.

Colorado-based nonprofit healthcare organization TRU Community Care teamed up with Hover Senior Living Community’s skilled nursing facility to create a “hug tent” that allows visitors and residents to safely see and touch each other during the pandemic.

“It’s really good for the residents,” said Amanda Meier, a project coordinator for the organization. “I just wish everybody could find a way that they could not be so isolated, whatever it takes.”

The structure was put into place last week. Similar to the visitation booth with plastic sleeves adopted by a Virginia nursing home over the summer, the “hug tent” takes the idea to a completely different level. The former features a glass barrier and arm holes with plastic gloves attached, while uses a canopy tent to create a shelter where residents are placed.
Plastic sheeting, which is about 4 millimeters thick, is used to cover three sides of the tent, which is set up outside of the facility in a courtyard.
The tent also features plastic arm hole openings, for both the resident and their visitor, which allows them to physically touch and embrace each other safely. Both residents and visitors are required to wear gloves during the visit.
Facility staff members disinfect the tent between each meeting.
“It’s pretty emotional, more than you think it should be,” Janet Morrell, the daughter of a resident, told local media.
Shopping for the Holidays at Amazon?
Use Amazon Smile instead, and 0.5% of your purchase price will go to VOR!

  1. Just go to smile.amazon.com instead of the regular amazon.com site, and sign in with your account credentials.
  2. Amazon should then give you a prompt to Select A Charity.
  3. Type into the search box: VOR - Elk Grove Village and click on the Select button.
  4. Now, bookmark the Amazon Smile page and paste it into your Bookmark Toolbar, so that every time you go to Amazon, you go through the SMILE portal.
State News:
Again, VOR does not endorse the bias within the following article, We post it as an example of the way opponents of larger congregate care facilities have taken advantage of COVID-19 -related tragedies to advance their agenda of closing ICFs.
South Carolina - State-Run Home had One of SC’s Worst COVID Outbreaks. Advocates Pushing to Empty Facilities.
By Mary Katherine Wildeman, The Post and Courier, November 21, 2020
Late one June night, after taking the garbage to the trash bin, as he often liked to do, a young man living at a home for people with disabilities in Clinton missed his family and decided to start walking home.

The 22-year-old, who lives with autism among other disabilities, had wandered away at least six other times in the past two weeks. But with the facility engulfed in a rash of COVID-19 cases, the two staff members at the Whitten Center assigned to his unit didn’t know that. They were looking after 14 people, far more than they should have been.
In fact, they didn’t notice his absence at all until 45 minutes later, when police called to inform them the young man had been hit by a car and was recovering at the local hospital.

The S.C. Department of Disabilities and Special Needs, which runs the Whitten Center and seven other sites like it across the state, says COVID-19 outbreaks have been hard to prevent. Already strapped for staff, the coronavirus pandemic has worsened an understaffing problem and, at times, caused dangerous conditions for both staff and residents.

The total cases at the Laurens County space — 230 in staff and residents as of Friday morning —
is higher than the raw numbers at any nursing home or assisted living unit in South Carolinasince the pandemic began, according to S.C. Department of Health and Environmental Control data.

The state disabilities agency maintains they followed protocol. Regulators disagreed, and over the summer even threatened to withdraw federal funding, according to state and federal records obtained by The Post and Courier.

As COVID-19 sweeps through nursing homes and other centers that care for people for a long time, disability advocates say South Carolina lacks a roadmap to do what would keep people safest: Move them out.

South Carolina is one of only a handful of states that doesn’t have a plan to move people out of group settings 20 years after the landmark U.S. Supreme Court Olmstead decision resolved that unnecessary institutionalization violates people’s civil rights.
Massachusetts - State Data Appear to Show COVID the leading Cause of Death This Year in the DDS System
By Dave Kassel, The COFAR Blog, Nov. 24, 2020
Data obtained by COFAR from the state under a Public Records Law request unsurprisingly appear to show that COVID-19 has been the leading cause of death in the Department of Developmental Services (DDS) system since January.

Despite that, deaths among residents in the DDS system fortunately do not appear to be currently rising at as rapid a rate as COVID infections are rising among those residents. Most of the COVID-related deaths appear to have occurred during the first peak-COVID period in the state as a whole, in April and May.

The highest rate of COVID infection in the DDS system currently appears to be among staff. But the current death rate, if any, among staff isn’t publicly known. The Baker administration does not publish any current data on deaths among staff in the DDS system.
Data provided by the Disabled Persons Protection Commission (DPPC) under a public records request indicate that of the 650 residents in the DDS system who were reported to DPPC to have died between January 1 and November 4 of this year, the largest single reported cause of death has been COVID-19.

A total of 143 of the 650 reported deaths in the DDS system — or 22% — were reported to be due either solely or partly to COVID. That total includes numbers of cases where COVID was one of multiple reported causes.

Meanwhile, the number of COVID-infected residents and staff has surged in the DDS system in recent weeks. As shown in the first graph below, the number of DDS provider-operated group home residents testing positive for COVID-19 rose from less than 20, in one week in mid-October, to 131 as of the seven-day period ending November 17.
New York - Coronavirus Concerns Deepen in Facilities for New York's Developmentally Disabled
By Brendan J. Lyons, Times-Union, Nov. 24, 2020
Employees say they are being stretched thin in New York's group homes for the developmentally disabled as staffing shortages have apparently prompted the state agency that runs the facilities to tweak its COVID-19 policies to ensure that workers who have been exposed to the virus but are asymptomatic — or, in rare instances, have tested positive and not completed 10 days of isolation — must return to work.

The state Office for People With Developmental Disabilities said that as of Monday 484 people with intellectual and developmental disabilities had died due to COVID-19. The office also said that of the roughly 140,000 people supported by OPWDD, 4,261 have tested positive for coronavirus.

In addition, nearly 5,500 staff members — from a workforce of 104,000 — have tested positive for COVID-19. The office declined to provide the number of staff fatalities, but a person briefed on that information said that as of last week there had been nine staff deaths attributed to COVID-19.

Unless it is ordered by a health department, there is currently no mandatory coronavirus testing of employees or group home residents, even in facilities where there have been outbreaks or exposures, two employees said. Many of the workers said they are unsettled by the policies, and noted that group home workers are not all being fitted for N95 masks; instead, they're using face shields or surgical masks at a time when the state has millions of N95 masks sitting in warehouses.

Randi DiAntonio, a vice president for the Public Employees Federation in the Rochester area, said the adjusted COVID-19 rules that were issued
earlier this month by OPWDD are apparently in response to staffing shortages. Many employees, she added, are working extended hours with fewer chances for a break — including time that could be used to get tested for coronavirus.

Jennifer O'Sullivan, a spokeswoman for OPWDD, said: "As of this time, we are not aware of any plans to close programs due to staff shortages."
She added that their office is "taking the threat of COVID-19 to the people we support very seriously and has taken several steps in response to the public health emergency, including closely monitoring all reports of possible contact within our system across the state."

DiAntonio said "the staffing crisis has really sort of magnified the problem" and may have prompted the rules that allow employees exposed to coronavirus to return to work. They are required to self-screen twice a day during their shifts.

"It allows them to work around the quarantine if they are short-staffed," DiAntonio said. "You would have to wear a mask, but essentially even if you're exposed to a confirmed case they could tell you to come to work. We would feel better if there was a robust testing program, and we’ve been calling on them to offer it on-site. ... They are encouraging the testing of employees but not doing anything on-site and not giving them any time to go get themselves tested."
Massachusetts - Opinion: Focus On What The Fernald Became, Not What It Was
"My life centered around Fernald because my sister lived there for 67 years," writes
By Dorothy Rouleau.Waltham Patch, November 20, 2020

The following letter to the editor was submitted by Dorothy Rouleau, whose sister lived at the Walter E Fernald Developmental Center for more than 50 years, in connection with this article: Disability Advocates Push Back On Waltham Light Show At The Fernald.

Many of those who denounce [the light show at the Fernald] do not know fully the true Fernald. They live in what Fernald was at a particular point and not what Fernald became.

My life centered around Fernald because my sister lived there for 67 years. I was a child visiting Margaret with my parents on the first Sunday of every month. It was a depressing place and my sister cried when we left wanting to come with us.

That all changed in 1972 when Judge Joseph Tauro decreed the Fernald be improved and forced the Commonwealth of Massachusetts to make changes, to add staff, to hire teachers, full visiting hours, and designed a viable community for the disabled that also included a self-standing Chapel, indoor swimming pool, workshop, gift shop, garden area for making and selling creations especially on holidays, etc.

The Commonwealth came up to the endeavor. Its biggest mistake is in closing Fernald for the disabled. I am grateful to Mayor McCarthy and the City of Waltham for its insight in the purchase of the Fernald property.

It is time to tell the truth about Fernald and not to live in the past of its difficult history but in what it turned into and what was created.

For those who do live in the past and helped to close Fernald, I can only say that they must have had their own agenda. Most transfers were not made into community homes but into state ops and into the remaining developmental centers. They therefore received no admissions and no money.

Fernald was a wonderful institution and a beacon for outstanding care.
We Love Our Direct Support Professionals!:
Opinion: Direct Support Professionals Deserve our Thanks - and More Support
By Donna Hollis, Susan Pearson, Tracey Walker and Kevin Zingler, CT Mirror, November 25, 2020
In this time of Thanksgiving throughout our nation, we want to pause to thank and express appreciation for the direct support professionals (DSPs) working daily with people with intellectual disabilities in the community.

These essential personnel work day in and day out in group homes, employment programs and with people in their own homes. The time of COVID has been difficult for all and especially challenging for those with intellectual disabilities who we all serve and support. Despite the stress and worry of keeping themselves and their own families safe, these professionals have risen to the challenge again and again. For this we are grateful.
However, these staff cannot provide this care without the resources to do so. While the state and federal government initially sent relief funds to assist agencies in meeting the COVID crisis, that assistance has come to an end. The need to provide resources to the essential workers has not ended. Private nonprofit providers still must access appropriate and abundant PPE, N95 fit testing, COVID testing and adequate relief staffing to preserve staff health and wellbeing. There was a staffing shortage before COVID that has quickly reached the crisis level in the face of the pandemic. COVID is stressing a service delivery system that was not adequately resourced before the virus struck. There has not been a contractual increase for us since 2007.
For The DSP Workforce, Retention Is About More Than Money
By Monica E. Oss, Open Minds, November 24, 2020

(Note: The following article is free on the Open Minds site, but you may have to register to read it)

For the recruitment and retention of the direct care workforce in health and human services, there are as many nuances as there are roles. Best practices in talent management for physicians, psychiatrists, nurses, nurse practitioners, physician assistants, social workers, and direct support professionals vary greatly. But while all of these positions are hard to fill, for specialty provider organizations, the direct support professionals (DSPs) present a critical challenge.

There are an estimated 1.3 million DSPs that support individuals with intellectual and developmental disabilities (I/DD). DSPs, on average, are aged 42 years and nearly 90% are women. 47% are White, while 30% are African American, and 16% are Hispanic/Latino. And about 45% have completed some college coursework or have a college degree. At a wage of $11.76 per hour, the average DSP who works full-time is paid less than the federal poverty level for a family of four. Almost half of DSPs receive social services—medical, food, or housing assistance. Most DSPs work at least two jobs. The annual turnover rate in the DSP workforce is an estimated 46%, with about 38% leaving in the first six months and approximately 21% leaving within 6 to 12 months. Costs associated with replacing a DSP range between $2,413 and $5,200. With this turnover rate, it is estimated that just to sustain services at the current levels, 574,200 new DSPs need to be hired into the workforce every year (see Direct Support Workforce).
The pandemic has compounded the DSP shortage. In May 2020, about 42% of DSPs reported having a colleague who quit due to the pandemic. Of those who quit, 34% feared becoming infected with COVID-19, 9% left because they tested positive for COVID-19, and 25% had child care problems due to the public health emergency.

The challenge for provider organization strategy is how to recruit and retain the army of DSPs that they need. That was the focus of the discussion by Luke Crabtree, MBA, J.D., President and Chief Executive Officer, Project Transition, and C. Lynn Mason, President and Chief Executive Officer, Broadstep, in the session, Leading Your Direct Care Workforce: From Physician To Home Care Staff, at the 2020 OPEN MINDS Executive Leadership Retreat (session recordings and resources are available on demand until November 30). They discussed five best practices for DSP retention—clarify the mission, offer growth opportunities, tie compensation to margin, engage the workforce, and step up the marketing.
VOR's Fall Membership & Fundraising Campaign!
It is the season of giving. We give thanks, we give gifts, we give or ourselves.

Won't you help us to provide our gift to those who need it most?

There are many ways to give.
Click on the links below for details.
VOR Bill Watch:
Click on blue link to view information about the bill

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).


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.

OF CONCERN:

VOR is concerned about the following bills because they only cover HCBS proivders, and because the sponsors of the bills have consistently fought against ICFs as part of the continuum of care in I/DD services.

H,R. 6305 & S. 3544 - Coronavirus Relief for Seniors and People with Disabilities Act of 2020 - Bill provides FY2020 supplemental appropriations to the Centers for Medicare & Medicaid Services for specified quality improvement and laboratory certification activities. The funds are designated as an emergency requirement, which exempts the funds from discretionary spending limits and other budget enforcement rules.
In addition, the bill (1) temporarily requires state Medicaid programs to provide Medicare cost-sharing assistance to certain individuals who qualify for, or are enrolled in, the low-income subsidy program under the Medicare prescription drug benefit; and (2) authorizes a grant program to support Medicaid home- and community-based services during the public health emergency.

TELEHEALTH:

During the COVID-19 Pandemic, Health Care Providers have been relying increasingly on Telehealth Services. Members of Congress have proposed a number of bills to learn more about telehealth services, with a possible eye toward expanding these services into our broader system of health care.

VOR has been following the expansion of telehealth, especially how incorporating these services into treatment of people with I/DD might change our delivery systems. Telehealth has the potential to improve care for some people with poor access to professional care, or it could be used as a less-expensive substitute for in-person treatment and quality professional care.

Current Telehealth bills in the 116th Congress include:

H.R. 6474 - Healthcare Broadband Expansion During COVID-19 Act - To provide for the expansion of the Rural Health Care Program of the Federal Communications Commission in response to COVID–19, and for other purposes.

H.R. 7078 - To study the effects of changes to telehealth under the Medicare and Medicaid programs during the COVID-19 emergency.

S. 3999 - A bill to amend title XVIII of the Social Security Act to simplify payments for telehealth services furnished by Federally qualified health centers or rural health clinics under the Medicare program, and for other purposes.

S. 3999 - A bill to amend title XVIII of the Social Security Act to ensure access to mental health and behavioral health services furnished through telehealth under the Medicare program.
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?

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