September 18, 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:
Direct Support Professionals
Recognition Week
September 13 - 19, 2020
‘The true measure of any society can be found in how it treats its most vulnerable members.’ - Mahatma Gandhi

DSPs are essential workers.

They assist people with disabilities in daily living activities like personal care, feeding, cleaning and medication management. They communicate with those for whom communication is a challenge.
They provide love, care, safety, and understanding.

We, the parents, siblings, guardians, and friends of individuals with intellectual and developmental disabilities, would like to extend our thanks in recognition of the kindness, the good work and the personal sacrifices that Direct Support Professionals make to ensure the health, safety and happiness of our loved ones with IDD.
National News:
Hopes Fade For Coronavirus Relief For People With Disabilities
By Michelle Diament, Disability Scoop, September 14, 2020
Another round of stimulus checks for people with disabilities and long-sought funding to ease the fallout of the COVID-19 pandemic on home- and community-based services are looking increasingly uncertain.

Disability advocates have been pressing lawmakers in Washington since the start of the pandemic to address the needs of people with disabilities, who have been especially hard hit. Advocates were optimistic when the U.S. House of Representatives passed a wide-ranging relief bill in May, but since that time, negotiations between Democrats and Republicans have dragged.

Now the situation appears to have hit a new low. Last week, a pared-down coronavirus relief proposal failed in the Senate marking the latest stalemate and coming just weeks before lawmakers are set to break ahead of the November election.

Without Guarantee of Additional COVID-19 Aid, State Medicaid Directors Warn of Painful Cuts Ahead
By Gaby Galvin, Morning Consult, September 17, 2020

As the prospect of Congress passing additional COVID-19 aid for state Medicaid programs this fall dims, some states are already facing deep cuts that could have painful ripple effects for patients and providers alike.

Cuts to Medicaid, the safety net health insurance program that covers 1 in 5 Americans, could be disastrous during a health and economic crisis like the coronavirus pandemic, state and health care leaders have warned, given Medicaid enrollment rises during economic downturns, just as state revenues fall and budgets constrict. This spring, Congress increased federal matching funds for Medicaid by 6.2 percentage points to help stabilize the program during the pandemic, but states have asked for a bump to at least 12 percentage points to the Federal Medical Assistance Percentage.

States, which operate on balanced budgets, say that without the increased federal aid, their Medicaid programs will likely see cuts like reduced provider payment rates and slashed benefits, and a number of them have already taken these steps.

or example, facing a $1.2 billion deficit, the Nevada Legislature reduced Medicaid provider rates by 6 percent this summer, while Colorado implemented a 1 percent cut to Medicaid community providers, increased co-pays for some Medicaid-covered services and delayed a new benefit for people with substance use disorder. The cuts come as the need for health care services has surged: Families USA estimates that more than 4.3 million people have been added to the Medicaid rolls since February, with state-level increases ranging from 0.8 percent in Montana to 17.2 percent in Kentucky. The current FMAP bump “was a huge help, but it didn’t cover the loss of revenue that the state was expecting,” said John Bartholomew, the Colorado Department of Health Care Policy and Financing’s chief financial officer.

CMS Formally Scraps MFAR, Averting Potential $50B in Medicaid Cuts
By Maggie Flynn, Skilled Nursing News, September 14, 2020
Note: The article below, being from Skilled Nursing News, refers solelu to SNFs. MFAR would also have affected ICFs and other care options.

The head of the Centers for Medicare & Medicaid Services (CMS) announced Monday that the agency is withdrawing a controversial rule intended to overhaul Medicaid supplemental payments — a rule that could have put as much as $50 billion in jeopardy.

Providers were adamant that the rule would result in disaster for SNFs in states that depended on the program, including Texas, Indiana and a handful of others.

“It would result in closures,” Eddie Parades, senior vice president of Lewisville, Texas-based StoneGate Senior Living, told Skilled Nursing News in January of this year. “If this was realized, in the rule, it would be the largest Medicaid change across the nation — I’ve been in this profession 34 years — in my professional career. … This new interpretation could be devastating.”

And that was before a major pandemic rocked the finances of states across the country.

After COVID-19 hit, an aid bill proposed by Democrats in the House of Representatives in May included a clause that would have indefinitely delayed the implementation of MFAR, forbidding the HHS secretary from taking any action on it or implementing a similar rule during the COVID-19 public health emergency.
In July, a slew of governmental and health care organizations called on the federal government to increase its share of Medicaid payments and to rescind MFAR, citing concerns about what the plan would do to states’ ability to finance their share of Medicaid.

“We believe this rule would reduce the ability of states and localities to finance the non-federal share of Medicaid, resulting in a reduction in federal Medicaid funding for the public health and hospital systems and destabilizing them at a time when healthcare and public health services are needed most,” the July 10 letter said.

Spotlight: Work Centers and 14(c) At Risk
VOR continues to support work centers (formerly sheltered workshops) and 14(c) wage certificates for people with I/DD.

The following three articles show what we are up against.

The first two articles present the U.S Commission on Civil Rights' declaration that the time has come to phase out these work centers, and the National Council on Disabilities' support of that position. Both agencies deliberately misrepresent Olmstead as an "integration mandate" and use that misinterpretation as a cudgel to strike down any opposing views.

The third article, while biased in favor of closing work centers, does present some arguments in support of keeping them open. We have excerpted only those sections of that article here, but we encourage our readers to read the whole article.

VOR believes that this defies the true intent of Olmstead, which includes the protection of CHOICE We believe closing work centers would violate the civil rights of those who are left out of supported employment programs and forced into day programs.
Government Agency Recommends Ending Subminimum Wage
By Michelle Diament, Disability Scoop, September 18, 2020
A federal civil rights commission is calling for an end to a policy that allows people with disabilities to be paid less than minimum wage describing the program as “rife with abuse.”

In a report out Thursday, the U.S. Commission on Civil Rights said the time has come to phase out subminimum wage.

Employers are currently able to obtain certificates from the Department of Labor allowing them to pay workers with disabilities less than the federal minimum wage of $7.25 per hour. The provision in Section 14(c) of the Fair Labor Standards Act dates back to 1938.

The practice has come under fire in recent years for being discriminatory and exploitative, with advocates putting an increasing emphasis on the opportunities available through competitive integrated employment even as some families have fought to maintain access to sheltered workshops.
Cities and states from Alaska to New Hampshire have imposed restrictions on paying people with disabilities less than minimum wage. And, at the national level, both Republican and Democratic Party platforms have supported legislation doing away with subminimum wage. In 2019, the House of Representatives voted for the first time to outlaw subminimum wage, though the bill known as the Raise the Wage Act has not been considered in the Senate.

Now the civil rights commission — an independent, bipartisan agency established by Congress — is the latest to urge an end to the practice.

National Council on Disability Applauds U.S. Commission on Civil Rights’ Call to Repeal 14(c) Subminimum Wages
NCD Press Release, September 27, 2020
The National Council on Disability (NCD) – an independent federal agency that first called for the elimination of subminimum wages for people with disabilities in 2012 – today applauds the leadership of another independent federal agency for doing the same.

Workers With Disabilities Can Earn Just $3.34 An Hour. Agency Says Law Needs Change
By Alina Selyukh, NPR, September 17, 2020
...The fate of these work programs has been contentious. Disability-rights advocates say the programs limit the workers' potential while using them as cheap labor. But some workers' families and the organizations themselves argue that eliminating them would threaten the well-being of people who are happy to be there and take away their choices.

... Most of the workers in subminimum-wage programs now are people who have intellectual and developmental disabilities. Some of their families helped workshops flood the commission with a record number of comments in support of sheltered workshops. Many noted concern for people with "severe" disabilities and said they wanted the programs to remain an option.
"We have chosen a workshop ... with our son's best interests at heart. Any suggestion that we would allow him to be taken advantage of or discriminated against is an insult," Linda Hau, the mother of a sheltered-workshop worker from Wisconsin, testified before the commission in November. She said the workshop allowed people "to work in an environment where they feel safe, loved and accepted, while having the pride of a paying job."

... Proponents of the workshops, however, zeroed in on former workshop workers who, without them, went on to work fewer hours or had to move to adult day care programs. Similarly, two civil rights commissioners who voted against Thursday's report argued that repealing subminimum wages would leave more people with disabilities unemployed.

"It is a matter of realism and trust," Commissioner Peter Kirsanow wrote in his dissent. "The realism lies in recognizing, as so many parents have, that there are some people whose disabilities mean that their life choices are limited. The trust lies in trusting that the parents and guardians of these individuals, who know them far better than we do, can decide [what settings] are best for their loved ones."

State News:
Texas Will Allow Visitations at Long-term Care Facilities with Active COVID-19 Cases
By Shawn Mulcahy, Texas Tribune, September 17, 2020
Texas long-term care facilities — even those with active COVID-19 cases — can allow visitors beginning Sept. 24, Gov. Greg Abbott announced Thursday.

Eligible facilities include nursing homes and intermediate care centers that serve residents without COVID-19, but that also have an isolation wing reserved for those who test positive for the virus. Visitation will also be allowed at state supported living centers, which house residents with intellectual and developmental disabilities.

Visitors previously were allowed only into long-term care facilities where there were no active cases of the virus among residents and no confirmed cases among staff members in the past two weeks, based on state guidelines released Aug. 6. And before that, all visitation was strictly banned beginning March 15.

Under the revised guidelines, residents of long-term care facilities can designate two “essential family caregivers” who will be allowed into a resident’s room. Caregivers are not required to maintain physical distancing, but only one person can visit at a time. Essential family caregivers will be trained on the proper use of protective gear and other infection control practices, according to state rules. They must also test negative for the virus within the previous two weeks.

Visitors not named as essential will still be allowed inside facilities, but will not be allowed to touch residents and must remain behind plexiglass barriers in an area of the home free from the coronavirus.

Arkansas - Reports Describe Misuse of Restraints at 2 State-Run Homes
By Kat Stromquist, Arkansas Democrat - Gazette, September 14, 2020
Before covid-19 outbreaks threatened two state-run homes for people with disabilities, records show regulators flagged the centers for endangering clients while using physical restraints -- a controversial yet common practice to defuse tense situations.

An ongoing Arkansas Democrat-Gazette review of documents from Conway Human Development Center and Booneville Human Development Center found five cases in which inspectors said facilities violated federal standards when staff members restrained clients, with some cases amounting to abuse.

A client at Booneville suffered a broken arm when a staffer restrained him in July 2019, and another lost consciousness in January that year when a staff member placed him in a "choke hold," inspectors said in reports.

A staff member at Conway threatened to restrain a female client all night if she didn't "shut up," an October report said.

Department of Human Services, police and prosecution reports obtained under the state's public-records law provide a window into facilities entrusted with the welfare of vulnerable Arkansans. They show recurring issues in cases involving both personal and "mechanical" restraints, such as a board with straps called a papoose board.
Sometimes, the facilities broke rules meant to limit restraint use in care facilities that receive federal payments from the Medicaid program, inspectors wrote in their reports. At other times, they didn't meet standards meant to protect clients from abuse during events involving restraints.

Division of Developmental Disabilities Services Director Melissa Stone said the events described in the documents were "self-reported" by the centers. She described them as "isolated incidents" that "should be categorized as abuse not a personal restraint gone wrong."

"What happened was not in compliance with our training and we considered the behavior maltreatment of our clients," Stone wrote in an email. "Maltreatment of clients is never OK, and individuals involved in the cases were immediately placed on administrative leave and all were terminated as I understand it."

Four of the five incidents the newspaper reviewed drew inspectors' most serious citation, "immediate jeopardy," which is for events that put clients "at risk for serious injury, serious harm, serious impairment or death."

New York - Group Homes, Services for Disabled face Devastating State Cuts at a Time of Crisis
By Nancy Cutler, Rockville/Westchester Journal News, September 18, 2020
The coronavirus pandemic has laid bare the precarious fiscal shape of agencies that aid New Yorkers with intellectual and developmental disabilities, say families and nonprofit leaders. The dire situation is even more shocking, families say, considering New York's human care system was once at the national forefront.

Nonprofit agencies say that during the COVID-19 crisis they have often been left to their own devices by the state Office for People With Developmental Disabilities. They have had to figure out how to ensure safety in congregate settings with an extremely vulnerable population.

The state OPWDD serves 110,000 New Yorkers with disabilities, 38,000 of whom reside in a residential setting like a group home.

Agencies that have pleaded for years for more state funding to help retrain poorly paid staff and provide services to the disabled are instead looking at cuts. OPWDD has announced cuts that will hit group homes in October.

Then there are the 20% across-the-board state reimbursements being withheld by Gov. Andrew Cuomo amid federal cuts. Those also hit OPWDD, and in turn, the nonprofits who provide services. 

Agencies and parents whose children rely on group homes have been fighting for Cuomo's attention at a time when everyone wants it. But they insist that some of New York's most vulnerable citizens are at serious risk.
Some signs read: "Gov. Cuomo, don't send us back to Willowbrook."

Parent advocate Terri Manzione said organizers didn't take lightly the reference to the notorious Willowbrook State School, a huge state-run institution for people with disabilities on Staten Island that became a national symbol of the inhumane warehousing of the developmentally disabled.

It was then-Gov. Mario Cuomo who signed the final order, on Sept. 17, 1987, that left Willowbrook "officially and forever closed."

But 33 years later, Manzione warned that state cuts to vital community-based agencies could set New York way back in terms of its care of people with disabilities.

"The governor has got to reverse some of the things he has in place," she said. The Long Island resident's 26-year-old son resides in a Center for Discovery group home in Sullivan County.

Parents who can't turn to agency staff, services and housing because of budget cuts may become desperate, Manzione said. "You are going to have a lot of parents dropping their kids off at emergency rooms" – in effect abandoning children so the state is forced to act.

New York - Nurses Union Rallies in Manhattan to Seek More Resources for Expected COVID Resurgence
ByTodd Maisel, AMNY,
September 15, 2020
The state’s nurses union rallied at Bellevue Hospital in Manhattan Tuesday afternoon against proposed Medicaid cuts and budget slashing to city hospitals which, they say, would harm medical responses to a potential second wave of COVID-19 this fall.

The 42,000 member New York State Nurses Association were on the front lines of the contagion this past spring and fear that cuts to the budget would harm their ability to handle a future outbreak and damage the city’s hospital system.

Their concern comes from failed Congressional negotiations on a stimulus plan that would deliver
a pandemic and economic aid package to the states. Union leaders and elected officials say Governor Andrew Cuomo indicated that New York may need to raise revenues to continue funding vital services.

The governor has previously threatened major cutbacks in state funding if Washington doesn’t come through with billions of dollars in aid for New York state.

Wisconsin - Once-Mighty Bethesda Presence Fades Even More
By Steve Sharp, Watertown Daily Tmes, September 11, 2020

Citing the fact that its revenue streams are drying up due in part to the COVID-19 pandemic, Bethesda is closing its group homes, day programs and employment services in Watertown and Wisconsin.
Its corporate office will remain in Watertown, albeit with staff reductions.

“Providing the very highest quality living and program services for people with intellectual and developmental disabilities has always been challenging, given we experience financial loss due to the low level of Medicaid reimbursement,” Don Klein, senior director of public affairs, said.
According to Klein, COVID-19 and the resulting economic downturn have made things much worse for Bethesda.

“Our costs have skyrocketed quickly and revenue coming from many of our services and fundraising has diminished,” he said. “The economic recession is expected to hit state budgets hard, further reducing the already inadequate funding for many of the services we provide, so as a result, we will be closing our group homes, day programs and employment services in Wisconsin.”

Bethesda College and thrift stores are not affected by these decisions, and its new residential community concept — Bethesda Cornerstone Village — will have a presence in Wisconsin.

“While our corporate office will remain in Watertown, we have significantly reduced the number of positions there, as well,” Klein said.

He noted Bethesda officials have been working closely with state leaders, in preparation for the transition of people Bethesda supports and it is notifying parents and guardians of plans.

South Dakota DHS Releases ‘Continuum of Care’ Report
Press Release, Yankton Daily Press and Dakotan, September 11, 2020

The South Dakota Department of Human Services (DHS) today released a report that highlights the continuum of services for individuals with intellectual and developmental disabilities (I/DD) within South Dakota.

“Individuals with I/DD deserve the opportunity to live in the most integrated setting based on their needs,” said DHS Secretary Shawnie Rechtenbaugh. Earlier this year, a consultant conducted an assessment of the state’s I/DD services and provided recommendations to strengthen the system.

Based on the recommendations within the report, the state is issuing a request to solicit information from interested providers to establish regional crisis diversion centers in the Sioux Falls and Rapid City area.
“The diversion centers would allow the department to offer regional access to our most intensive level of care which historically has only been available in Redfield. This is an opportunity to serve people closer to home,” Rechtenbaugh added.

The South Dakota Developmental Center will continue to serve the central region of the state with an emphasis on transitional living to assist individuals with becoming more independent and moving to a less restrictive environment.

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.

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