September 25, 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
VOR & You:
VOR Remembers Justice Ruth Bader Ginsburg
“Fight for the things that you care about, but do it in a way that will lead others to join you.” - Ruth Bader Ginsburg
It is with great sadness that VOR mourns the passing of Supreme Court Justice Ruth Bader Ginsburg, and with great joy that we celebrate her life and the gift that she gave to our families and our loved ones with intellectual and developmental disabilities.
We wish to thank Justice Ginsburg for having heard our voice, and for having included an amicus brief submitted by VOR in her opinion attached to the Court’s landmark ruling in Olmstead:

“Each disabled person is entitled to treatment in the most integrated setting possible for that person – recognizing that, on a case-by-case basis, that setting may be in an institution.”
 - Olmstead v. L.C., 527 U.S. 581, 605 (1999)(quoting Brief of VOR et al., as Amici Curiae at 11)
The Olmstead decision is often misrepresented as an ‘integration mandate’, but that’s not true. By including the ideas of VOR and others in her opinion, Justice Ginsburg declared Olmstead a mandate for choice. 

141 organizations and family groups signed on in support of VOR’s brief, which was written and submitted on our behalf by Attorney Bill Burke, with input and guidance from VOR's past presidents Polly Spare, Marilyn Straw, and Mary McTernan, Government Affairs Director Tamie Hopp, attorney Sam Golden, and other members.

Justice Ginsburg taught us that if we persist, and if we unite with others to strengthen our voice, our voice can be heard - from the homes of a few concerned families, all the way to the highest court in the land.

Justice Ginsburg left us with many memorable quotes. Here are two, both relevant to VOR's cause and our mission:

“You can disagree without being disagreeable."

"Real change, enduring change, happens one step at a time.”

For more information on the Olmstead Decision, please visit our website at:
"I would like to be remembered as someone who used whatever talent she had to do her work to the very best of her ability."
Supreme Court Justice Ruth Bader Ginsburg, 1933 - 2020
Money Follows the Person:
CMS Adds $165 Million to Money Follows the Person

Center for Medicare and Medicaid Services (CMS) announced on Wednesday that they will offer an additional $165 Million to the Money Follows the Person program (MFP), available to 33 states (including the District of Columbia). MFP is designed as a 'rebalancing' act, with the intention of moving people and funds from institutional care into Home and Community Based Services (HCBS). HCBS settings include group homes, family home, and own home (independent living with assistance). Participating states may request up to $5 Million of these funds through June 30, 2021.

These funds are not a new appropriation. They come from previous appropriations to the MFP program.

While the impetus behind this extension appears to be offering the elderly the opportunity to move out of nursing homes during the COVID-19 pandemic, states that qualify for MFP funds are able to use them as they see fit. This may include moving peop[le out of ICFs and into HCBS settings.

For further information, please see the two articles below:
Trump Administration Pushing Program That Moves People Out Of Institutions
By Michelle Diament, Disability Scoop, September 25, 2020
Medicaid officials are looking to “jump-start efforts” to move people with disabilities from institutions to community-based settings and they’re offering up millions of dollars to do so.

The Centers for Medicare & Medicaid Services said this week that up to $165 million is available to states for a program called Money Follows the Person.

The Medicaid program provides funding to states to cover employment supports, housing and other services so that individuals with disabilities can transition from nursing homes and other institutional facilities to homes in the community.

Federal officials said that they want to boost transitions out of institutional facilities particularly in light of the COVID-19 pandemic, which has hit nursing homes and other congregate settings especially hard.

“The tragic devastation wrought by the coronavirus on nursing home residents exposes America’s overreliance on institutional long-term care facilities,” said Seema Verma, administrator of the Centers for Medicare & Medicaid Services.
“Residential care will always be an essential part of the care continuum, but our goal must always be to give residents options that help keep our loved ones in their own homes and communities for as long as possible.”

Between 2008 and 2019, Money Follows the Person helped 101,540 people leave institutions for community-based settings, according to a report out this week from the Centers for Medicare and Medicaid Services. However, the report notes that transitions to the community were down 46% in 2019 compared to 2018 as some states slowed or ended their programs.

This comes as Money Follows the Person has faced an uncertain future in recent years. The program officially expired in 2016, but Congress has approved a series of short-term extensions, with the latest one running through November.

CMS Announces Funding to Transition Individuals from Institutional Care
Home Care Magazine, September 24, 2020

(Excerpt from article:)

Each state is eligible to receive up to $5 million in supplemental funding for planning and capacity building activities to accelerate long-term care system transformation design and implementation, and to expand HCBS capacity, such as:
  • Assessing HCBS system capacity and determining the extent to which additional providers and/or services might be needed; 
  • Assessing institutional capacity and determining the extent to which the state could reduce this capacity and transition impacted individuals to more integrated settings; 
  • Provider and direct service worker recruitment, education, training, technical assistance, and quality improvement activities, including training people with disabilities to become direct service workers;
  • Caregiver training and education;
  • Assessing and implementing changes to reimbursement rates and payment methodologies to expand HCBS provider capacity and/or improve HCBS and/or institutional service quality;
  • Building Medicaid-housing partnerships to facilitate access to affordable and accessible housing for Medicaid beneficiaries with disabilities and older adults; and
  • Diversion strategies to prevent nursing facility admission.

In addition, states could use this funding opportunity to support HCBS planning and capacity building activities in direct response to the COVID-19 public health emergency, such as to plan and implement the use of telehealth for nursing facility transition activities that would normally be conducted in-person or to redesign service delivery models to reduce the risk of COVID-19 infection among MFP participants.

National News:
Direct Care Workers would see a $9.4B Pay Increase with adoption of Living Wage: Industry Study
By Danielle Brown, McKnight's Long-Term Care News, September 23, 2020
Increasing direct care workers’ pay to a living wage would not only raise their total wages by $9.4 billion by 2022, it would also come with a set of benefits for operators, which includes less staff shortages and turnover costs, an industry study reveals.  

LeadingAge on Tuesday released findings from its new analysis that examined what would happen if direct care workers received a living wage. A living wage is defined as a wage that would allow workers to pay for basic living expenses out of their own earnings and without relying on public assistance.

The findings showed that if a living wage was adopted, current direct care workers, who don’t make a living wage, would earn a total pay increase of $5 billion by 2022, and workers who do currently earn a living wage would see a total indirect pay increase of about $500 million. 

Additionally, it found that adopting a living wage would in turn increase hours for workers and result in an additional $2.24 billion in pay. It would also attract more people to the profession and result in another $1.59 billion in pay. 

“All in all, pay would go up by $9.4 billion by 2022 in the industry,” researcher Christian Weller, Ph.D., a UMass professor and senior fellow with the Center for American Progress, said during Tuesday during a panel discussion on the findings. “That’s the starting point.”

Weller explained that the study also found that the benefits from the higher pay would also reduce turnover and associated turnover costs, increase worker productivity and reduce financial insecurity for staff members.
“By reducing turnover that also means retaining people longer. They’re gaining more experience, they’re becoming better at the care that they provide,” he said. 

“The other part is by paying people more you are reducing their financial insecurity, bringing them out of poverty. That reduction in financial insecurity reduces stress, allows people to focus more on their jobs and that also boosts productivity,” he added. 

Industry stakeholders and advocates stated that they loved that the report focused on the benefits of paying a living wage to workers, and not just the costs. 

“This report actually shifts from the cost side and [asks] isn’t there upside … isn’t there a potential win-win here in that we get a better experience for the staff and a better experience for the patients?” David Grabowski, Harvard healthcare policy, said during the discussion. 

“That’s exactly what we see, and this report really does a great job taking us through all the different benefits with better pay [and] a living wage,” he added. “We’re going to get less staff shortages, less turnover, an improved quality of care and quality of life for long-term care recipients and we’re going to get improved economic growth and productivity. That’s a lot of benefits there.”

Spotlight: Why Murray Center?
The Murray Parents Association
is presenting a series of videos featuring families explaining why Murray Center and Intermediate Care Facilities can offer care and benefits not available in other settings.

In the first video, Peggy strong describes Marjorie's journey, and how Murray Center has changed her life and given her freedom that she had never had in group home settings.
Peggy Strong & Marjorie

State News:
Texas - Deputies Recently Responded to 2 Deaths at Unlicensed Group Home where 35 Adults were Found
By Marla Carter, ABC-TV 13, September 24, 2020
Deplorable conditions, that's how a sergeant with the Harris County Precinct 7 Constable's Office described an unlicensed group home.

At least 35 people were living inside a two story home in the 14000 block of Long Meadow Drive.

ABC13 has also learned from deputies that over the past several months, they've responded to two deaths at the home. Eyewitness News is waiting to get more information on that.

Deputies said the home was infested with cockroaches, had little food, no medication and was operating with just one functioning restroom for at least 35 people. The group home is called the Caring Hands Group Homes.

"I would have never in a million years guessed that, that was going on four houses down from me," said neighbor Ivana Moore.

Neighbors said that they saw people coming and going, but never imagined this was happening behind closed doors.
A majority of the residents that were at the home had mental and health issues or physical disabilities.

"You have people that are suffering from extreme disability and mental health issues. A lot of them didn't know how to communicate what was going on, so they were at a disadvantage," said Harris County Precinct 7 Media Relations Director Pamela Greenwood.

After a welfare check prompted deputies to check the home, they found some people who were not receiving the care they needed, including a triple amputee and another wounded man.

"There was another gentleman who had gaping wounds in his abdomen area," said Greenwood.

Thirteen people were transported to the hospital, Adult Protective Services said.

Connecticut - Nonprofits Scrambling to Stay Afloat During COVID, Survey Finds
By Keith M. Phaneuf, CT Mirror, September 25, 2020
A new survey showed Connecticut’s nonprofits scrambling to stay afloat in the pandemic, with two-thirds having cut services and one in five unsure if they can meet payroll.

The analysis, prepared for the CT Community Nonprofit Alliance, also found that 67% of organizations were unable to hold fundraising activities while others face declining donations or had philanthropic grants placed on hold.

“COVID-19 has challenged community nonprofits in every possible way, from fundraising through the delivery of services,” said Gian Carl Casa, alliance president and CEO. “Many human service providers on the frontlines of the crisis have struggled to continue to keep their doors open, while protecting both employees and the people they serve.”

The alliance represents more than 300 agencies that provide social services, health, education, housing, and arts and cultural programs. The state delivers the bulk of public-sponsored social services through contracts with private, community-level nonprofits.
Of the 258 agencies surveyed, 21% were unsure they could cover payroll beyond the next three months. And while two-thirds of agencies already have reduced services, 28% were unsure they could maintain what they still offer beyond the next three months.

While 71% of those surveyed said they either are doing well or believe they can begin to recover if the worst of the pandemic is over, 29% said they still are struggling.

The problem is particularly acute for about four out of 10 nonprofits, those smaller agencies with annual budgets less than $1 million.

Oregon - Lawmaker Accuses Oregon Health Authority Of Ignoring People With Disabilities
By Ben Botkin, Lund Report, September 23, 2020
An Oregon senator blasted the Oregon Health Authority on Wednesday for ignoring people with intellectual and developmental disabilities in proposed reforms of the behavioral health care system.

Sen. Sara Gelser, D-Corvallis, said she is tired of people with intellectual and developmental disabilities being “invisible” in Oregon. Her statement followed a presentation by the health authority to a Senate committee about recommendations from the Governor’s Behavioral Health Advisory Council. The meeting of the Senate Interim Committee on Mental Health is part of Oregon Legislative Days, a weeklong series of lawmaker meetings to prepare for the 2021 session.
Gelser said she was disappointed that none of the recommendations addressed people with intellectual and developmental disabilities.

“At what point does this population matter, or has the health authority and the state of Oregon just decided this is a subgroup of our population that will never be seen in serious work?” Gelser said.

Florida - Program to Help People with Disabilities Find Work Stalls
By Christine Sexton, Gainesville Sun, September 21, 2020
A push by state lawmakers to encourage Floridians with intellectual and developmental disabilities to work has been stalled in Gov. Ron DeSantis’ administration for more than a year — and there's no clear indication when the program will get up and running.

Agency for Health Care Administration Secretary Mary Mayhew assured top legislative leaders and the governor’s office in a June 29 report that her agency was developing an outreach plan to promote what’s known as the Working People with Disabilities Program and that it would take effect in July.
But the program, initially passed by lawmakers in spring 2019, still isn’t operational, according to people who have tried to use it.

Tampa resident Mayra “Paulina” Reyes works full time for the Hillsborough County Parks and Recreation Department and will graduate from Pasco-Hernando State College in seven months with a business degree. Eager to potentially earn more money after graduation, Reyes spent more than an hour on the phone last week calling the local Medicaid office asking to be enrolled in the program.

“I took an hour lunch break and I literally had to ask my supervisor to give me an extra 20 to 30 minutes to try to get this done,” Reyes, 31, told The News Service of Florida. “As soon as I mentioned the Working People with Disabilities Program, they would put me on hold and try to figure out what program I was referring to.”

Reyes, who has cerebral palsy, receives home- and community-based services through the Medicaid program. Though she has health insurance through her job, home- and community-based services provide benefits that aren’t covered or are limited in traditional health insurance policies.
For instance, Reyes struggles with her balance and cannot do laundry on her own because she can’t pick up laundry baskets and walk with them. So she has a Medicaid-funded companion who helps her with that chore and others such as making dinner. She also relies on Medicaid to provide transportation because she cannot drive.

“Basically, they gave me the runaround,” Reyes said of the Medicaid office. “I got hung up on. By the third or fourth (call), when I actually got a real person, I was transferred back and forth to different departments. At the end of the day, the last person I spoke with honestly had no idea what I was referring to. And I feel like that was disappointing because I was so excited to find out about this program.”

Prior to the 2019 law, people with disabilities who received home- and community-based benefits were precluded from earning more than 300 percent of the federal poverty level, or $2,349 a month, if they wanted to maintain their benefits.

New Jersey Families, Advocates Urge Murphy to Reopen Job Programs for People with Disabilities
By Gene Myers, New Jersey Herald, September 22, 2020
Nearly 3,000 people with disabilities statewide, who were told to leave their jobs on March 17 as the coronavirus pandemic hit, are still waiting to go back to work, advocates said.

The workers, their families and advocates have urged the governor to reopen employment programs for people with disabilities as soon as possible. They have been shut-in too long, and furthermore, not allowing them to return to work reeks of discrimination, they said. Many of the individuals affected live in group homes throughout the state.

Matthew Putts is CEO of Employment Horizons, a nonprofit that trains and places people with “significant disabilities” in jobs like refurbishing returned cable and internet equipment, mailing and collating, and light manufacturing assembly.
“We are regularly getting Facebook messages and calls from clients saying, ‘Am I ever coming back?’” he said.

Putts said he does not understand why job programs haven’t come back online yet, since other programs that serve the same population, have been making plans and will be reopening this month.
Agencies like his were told to shut down by the commissioner of labor no later than March 17, he said, and they are still closed. He’s been “consistently reaching out” to Karen Carroll, state director of the Division of Vocational Rehabilitation Services (DVR) at the Department of Labor (DOL) and the DOL commissioner.

Requests for comment from Carroll went unanswered. Angela Delli Santi, communications director at the DOL only offered that “plans are being finalized” and the agency “will be able to share new developments soon.”

“The Sheltered Workshops have been approved to begin to reopen Monday. Those with approved plans will be cleared to reopen,” said Darryl Isherwood, spokesman for Governor Phil Murphy’s office in an email on Sept. 18.

Advocates called it another stall tactic when programs did not reopen Monday. Putts received an email Monday afternoon from the DVR with instructions on things that needed to be addressed in his plan before he would be approved to open.

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. 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.)


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 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.


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.

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]
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
If you would like to receive VOR's Action Alerts, General Announcements, or information about your membership but not receive the Weekly Newsletter, please select "Update Profile" below.

If you select "Unsubscribe" you will be removed from all of these lists.
Please don't unsubscribe!


If you have not received the newsletter and you think you have been unsubscribed in error, please write to [email protected] to re-subscribe.