December 4, 2020
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
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National News:
The Coronavirus Vaccine
There's much we know, and much we don't know about the various vaccines that are on the horizon, but the first wave of vaccinations will likely begin this month. Below are a few of the many articles about the vaccine and who may be in line to get it first.
What You Need to Know About the AstraZeneca, Moderna and Pfizer Vaccines
By Carolyn Y. Johnson and Aaron Steckelberg, Washington Post, November 30, 2020
In the third such announcement in as many weeks, AstraZeneca revealed Monday that its vaccine candidate, developed by Oxford University, is up to 90 percent effective in clinical trials. Pfizer and its German partner, BioNTech, and Moderna have each reported vaccines that are 95 percent effective in trials.

All three have said they will seek regulatory clearance to offer their vaccines to millions of people. The drugmakers have moved at record speed, and the first shots of the Pfizer and Moderna vaccines could be given in the coming weeks. The path for the AstraZeneca vaccine is less clear.
  • Why is the FDA using emergency powers to approve a vaccine?
  • When will I be able to get vaccinated?
  • How will the vaccines be shipped?
  • How do the vaccines work?
  • Are the vaccines safe?
  • Should I still get vaccinated if I already had the coronavirus?
  • Will I still need to socially distance?
  • Will I have a choice on which vaccine to take assuming more than one is approved?

Long-Term-Care Residents and Health Workers Should Get Vaccine First, C.D.C. Panel Says
By Abby Goodnough, New York Times, December 1, 2020, Updated December 3, 2020
An independent panel advising the Centers for Disease Control and Prevention voted Tuesday to recommend that residents and employees of nursing homes and similar facilities be the first people in the United States to receive coronavirus vaccines, along with health care workers who are especially at risk of being exposed to the virus. The panel, the Advisory Committee on Immunization Practices, voted 13 to 1 during an emergency meeting to make the recommendation. The director of the C.D.C., Dr. Robert R. Redfield, is expected to decide by Wednesday whether to accept it as the agency’s formal guidance to states as they prepare to start giving people the shots as soon as two weeks from now.

“We are acting none too soon,” said Dr. Beth Bell, a panel member and global health expert at the University of Washington, noting that Covid-19 would kill about 120 Americans during the meeting alone.

States are not required to follow the panel’s recommendations, but they usually do. The final decision will rest with governors, who are consulting with their top health officials as they complete distribution plans.

The new recommendation is the first of several expected from the panel over the coming weeks, as vaccines developed by Pfizer and Moderna go through the federal approval process, on the thorny question of which Americans should be at the front of the long line to get vaccinated while supply is still scarce. The panel described it as an interim recommendation that could change as more is learned about how well the vaccines work in different age groups and how well the manufacturers keep up with demand.

The roughly three million people living in long-term care and those who care for them are a relatively clear target; 39 percent of deaths from the coronavirus have occurred in such facilities, according to an analysis by The New York Times.
But states and health systems will ultimately have to decide which of the nation’s 21 million health care workers should qualify to receive the first doses, as there won’t be enough at first for everyone.

Pfizer and Moderna have estimated that they will have enough to vaccinate, at most, 22.5 million Americans by year’s end, with the required two doses, a few weeks apart. The C.D.C. will apportion the supply among the states, with the initial allocation proportional to the size of each state’s adult population.

The only member of the committee to vote against the recommendation was Dr. Helen Talbot, an infectious-disease specialist at Vanderbilt University, who expressed discomfort with putting long-term-care residents in the first priority group because the vaccines’ safety had not been studied in that particular population. “We enter this realm of ‘we hope it works and we hope it’s safe,’ and that concerns me on many levels,” she said before the vote.

But most panel members who offered opinions said they thought the high death rate among that group made it imperative to include it.

Hoping to Prevent Community Spread, Home-Based Care Advocates Vie for ‘Critical’ Vaccine Access
By Joyce Famakinwa, Home Health Care News, December 1, 2020

A number of national home-based care advocacy organizations have come together to address the CDC’s Advisory Committee on Immunization Practices (ACIP). In a new letter penned to ACIP Chairman Dr. José Romero, the group called for the inclusion of in-home caregivers when it comes to priority access to the COVID-19 vaccine.

The letter was born out of a collaboration between seven organizations, including the Home Care Association of America (HCAOA), the National Association for Home Care & Hospice (NAHC), the Partnership for Medicaid Home-Based Care (PMHC) and the Partnership for Quality Home Healthcare (PQHH).

“I’m really thrilled that all of the home care associations got together and are speaking in one voice on such an important issue as vaccines,” Vicki Hoak, executive director of HCAOA, told Home Health Care News.

In their letter, the national home-based care advocacy organizations commended ACIP’s recommendations but urged the committee to be specific in its definition of health care workers in order to ensure that all caregivers are included. That includes home health aides, hospice aides, personal care aides, home care workers, direct support professionals and others.

“Our concern is that under the most recent CDC COVID-19 Vaccination Program Interim Playbook for COVID-19 Vaccination Program Jurisdiction Operations, home care workers, specifically personal care aides and home health aides, are not explicitly mentioned as Phase 1 or Phase 1A critical populations for vaccinations,” PMHC Chairman David Totaro told HHCN in an email.

The distinction is important because caregivers working on the non-medical side of home-based care are sometimes overlooked when it comes to federal policy, according to Hoak.

“Sometimes when you think of COVID, you think ‘medical,’ and a personal care aide helping people with activities of daily living doesn’t always come to mind,” she said. “But they are just as critical, especially during this pandemic.”

State News:
Oregon Developmental Disabilities Company Repeatedly Failed Vulnerable Oregonians, U.S. Senate Investigation Finds
By Fedor Zarkhin, The Oregonian, December 3, 2020
U.S. Senate investigators have discovered a pattern of neglect and poor care in an Oregon company’s group homes for people with intellectual and developmental disabilities, finding problems that persisted despite repeated state efforts to force the company to improve.

The 19-month investigation into Mentor Oregon, spearheaded by the U.S. Senate Finance Committee, was launched in response to coverage in The Oregonian/OregonLive that outlined neglect in one of the company’s homes in Curry County. State officials at the time learned of neglect so severe that a resident smelled of “rotting flesh,” according to official records.

The federal report summarizing the committee’s investigation, published Thursday, blasted the company for failing to meet its obligations towards the vulnerable people it serves.

“Scores” of the company’s homes were found to be in violation of various regulations from 2013 to 2019, the committee found after reviewing 5,000 pages of documents. The most common problems included staff failing to follow doctors’ orders, staff not getting training and residents missing medications.

The significance of the investigation extends far beyond Oregon’s borders: Mentor Oregon is part of a national corporation that in 2018 operated homes in 36 states serving nearly 13,000 people. The parent company, the Mentor Network, is one of the largest human services companies in the United States, according to the committee’s findings.

Sen. Ron Wyden, D.-Ore., the finance committee’s ranking member, said in a statement that organizations such as Mentor must do more to protect the people in their care.

“It is clear that too many vulnerable Americans and their loved ones who count on caregivers to provide a safe and healthy living environment are being let down by those in a position of trust,” Wyden said. “This report shines a light on key shortfalls by Mentor Oregon in failing to meet standards of care for Oregonians they were entrusted to help.”

A parallel investigation focused on facilities in Iowa, home to the U.S. Senate Finance Committee’s chairman, Republican Chuck Grassley.

Grassley, Wyden Issue Reports on Developmental Disability Care Facilities in Iowa and Oregon
From KWWL 7-TV. December 3, 2020

Senate Finance Committee Chairman Chuck Grassley (R-Iowa) and Ranking Member Ron Wyden (D-Ore.) today issued two investigative reports regarding the performance and efficacy of providers REM Iowa and MENTOR Oregon, which receive significant federal funding through Medicaid to provide care for individuals with intellectual or developmental disabilities (I/DD). Grassley’s report found that REM Iowa continues to suffer from recurring critical incidents and provides recommendations to remediate these problems.

Wyden’s report found that despite increased scrutiny from its State regulator, a consistent pattern of substandard care persists by the direct care staff employed by MENTOR Oregon.

REM Iowa and MENTOR Oregon fall under the umbrella of The MENTOR Network and, as a whole, are responsible for ensuring that Iowans and Oregonians receive the highest quality care according to their individual needs.

“Any entity that receives taxpayers dollars, but especially those charged with caring for our fellow Americans who may have an intellectual disability, ought to be doing everything under the sun to ensure quality care and continually improve. I greatly respect the work of these caregivers, but REM Iowa can be doing more to improve its operations,” Grassley said.

“It is clear that too many vulnerable Americans and their loved ones who count on caregivers to provide a safe and healthy living environment are being let down by those in a position of trust,” Wyden said.
 “This report shines a light on key shortfalls by MENTOR Oregon in failing to meet standard of care for Oregonians they were entrusted to help. Tragically, reports of neglect and substandard care are far too common across the country – organizations that care for these individuals must do more to protect them.”

In April 2019, Chairman Grassley and Finance Committee Ranking Member Ron Wyden (D-Ore.) jointly began investigations of organizations in their home states that provide services to adults with I/DD. 
Grassley’s review of REM Iowa found that the company has had and continues to face problems, including failures to report abuse or neglect, failures to follow an individual’s particular care plan and failures to adhere to clients’ medication schedules. Grassley’s report makes three specific recommendations to REM Iowa: improve training practices for employees, improve access to data and establish a process to track and monitor critical incidents using electronic databases.

Grassley’s report also recommends that the federal and state governments improve oversight, outreach and support for facilities facing systemic issues.

Oklahoma - New Intermediate Care Facility Breaks Ground
By Chris Wilson, Lawton Constitution, December 1, 2020

Dan Wiginton and daughter Heather Clement, owners of Parker Living Centers, will break ground today on the Parker Place Living Center. The center is an intermediate care facility for individuals with intellectual and developmental disabilities (ICF-IIDs).

“My dad and I have been working on bringing this project to fruition for nearly two years,” said Clement. “So, we are ecstatic to finally be breaking ground in Lawton.”

The new facility, located at 7510 NW Sun, will consist of two 7,000-square-foot homes and each will have private bedrooms for 16 residents with shared living and dining areas, Clement said in a press release.
“We believe that individuals with intellectual and developmental disabilities who are not able to live at home deserve to live in a facility that provides a home like environment in which they may learn, grow, and thrive,” said Clement.

Clement said the goal of Parker Place Living Centers is to enable residents to reach optimal levels of physical, intellectual, social, and vocational functioning that each resident is capable of reaching.
“All skilled care and support services will be coordinated by an interdisciplinary care team and will be specific and diversified to meet the individualized needs to enhance our residents’ overall quality of life,” Clement said. “Our staff will be consistently trained to provide interventions and support that make it possible for individuals to lead productive lives to their fullest potential at each resident’s unique level of abilities.”

Potential residents may qualify for “Intermediate Care Facilities for Individuals with Intellectual Disabilities” through Medicaid, Clement said. ICC-IIDis an optional Medicaid benefit that enables states to provide comprehensive and individualized health care and rehabilitation services to individuals in order to promote their functional status and independence. Although it is an optional benefit, it is an alternative to the home and community based services waiver for individuals who need the level of care provided by an ICF-IID facility.

“In Oklahoma, individuals wait an average of 10 years to receive the home and community-based services waiver, leaving some families struggling to provide the skilled support and care their family member with a disability needs and deserves,” Clement said. “Oklahoma does not limit access to ICF-IID services; therefore, in some cases ICF-IID services may be more immediately available than other long-term care options.”

Pennsylvania - White Haven Center Reports Death from COVID-19
By Kent Jackson, Citizens' Voice, November 30, 2020
At least one resident of the White Haven Center has died from COVID-19, Pennsylvania’s Department of Human Services reported on a webpage that tracks the disease at state facilities.
The website says “less than five” deaths have occurred at White Haven; the state suppresses exact numbers of deaths below five.

No White Haven residents had COVID-19 until the end of October, but now 31 of 97 residents have tested positive. Twenty-eight residents currently have the disease as of 5 p.m. Monday. That’s up from 11 active cases on Wednesday.

The age and health conditions of residents put them at a greater risk from COVID-19. As of February, only four residents were younger than 45, and 40 residents were non-ambulatory.
Among White Haven’s 367 workers, 51 have tested positive for the disease. Thirty-six currently have COVID-19.

None of the state’s other centers for people with intellectual disabilities has reported a death, but all have cases. At the Ebensburg Center in Cambria County, 50 of 186 residents have tested positive. Polk Center in Venango County has had 10 cases among 183 residents and Selinsgrove Center in Snyder County also had 13 cases among 195 residents.

Deaths have occurred at three of seven state hospitals: Norristown has 10 deaths while South Mountain and Wernersville each report less than five. Locally, the state hospitals at Clarks Summit and Danville have reported no cases among residents and less than five among employees.

Michigan Direct Care Workers & Families Headed for Choppy Waters
By Robert Stein, Todd Culver, and Robert White, Bridge Michigan, December 2, 2020

Many people are approaching the end of 2020 with a sense of relief and hope for a better new year. But for those Michigan families who care for someone with a mental illness or developmental disability, Jan. 1, 2021 is a day fraught with dread.

That’s the date Michigan’s budget will no longer provide its $2 hourly pay increase for the direct care workers these families rely upon. As a result, they may lose the help and support they need to manage their busy households, continue their employment and ensure the best possible help for their loved ones.
This past spring, state policymakers acted to support Michigan’s direct care workers with a $2 hourly wage increase, designed to be temporary in nature. These funds were necessary to support the 50,000 dedicated individuals who have been working to provide urgently-needed personal care, vocational training and emotional support across the state.

Recognizing the need that continues to exist—and the fact that our state’s direct care workers are woefully underpaid—the temporary increase was sustained through the end of this calendar year. More than $100 million in federal funds was matched by a generous $40 million in state appropriations to ensure ongoing direct care worker support.

These funds ultimately ensure the well-being of an estimated 100,000 Michiganders coping with mental illness and developmental disabilities. The work our state’s direct care workers do is arduous, important and noble, and their positive impact is widespread, with over one million Michiganders relying upon the support direct care workers provide. 

Yet, these invaluable workers are often paid less than the person taking your fast-food order.
Now, as these funds run out, many families will lose the help they urgently need. Direct care workers who have been able to make ends meet with this temporary increase will now experience a cut in pay and may have to seek out other, more lucrative employment.

This will exacerbate Michigan’s direct care worker shortage. Current turnover in the field already is a staggering 37 percent and growing. Meanwhile, demand for the services these workers provide has never been higher.

Direct Support Professionals:
Pandemic Helpline For Caregivers of People With IDD

As the COVID-19 pandemic wears on, a new 24-hour support line is working to help individuals with developmental disabilities and those who care for them cope during this tough time.

Known as Project Connect, the telehealth line is free and available anytime for people with disabilities, their families, caregivers and other members of their support teams across the nation.

Project Connect is available by calling 888-847-3209.
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


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. 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.


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