December 3, 2021
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.

`1Image by Erik Karits on Pixabay
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
VOR's End of Year Fundraising Campaign

Our goal for this year is to make at least $45,000 in donations during the months of November, December, and January. So far, we're about a third of the way there, but there is still a long way to go.

We rely on your support, to support families like yours who rely on us to keep them informed, to advocate and to educate, and to speak

Please help us to reach, and exceed, our goal for this year.
Happy Hanukkah!

This year, Hanukkah begins on the evening of November 28th and ends on the evening of December 6th.

Wishing all of our families peace and light this holiday season!
National News:
Following Up on the Build Back Better Act

Now that Congress has passed the Continuing Resolution (CR) to keep the government funded for another three months, the Senate is about to turn its attention to the Defense Budget (NDAA), the Debt Ceiling, and the Build Back Better Act. Senate Majority Leader Chuck Schumer announced earlier this week that he hopes to bring the bill to the floor on or about December 13, although other sources remain skeptical.

VOR and its allies continue to rally members of the Senate to include ICFs in the 6-percentage point FMAP increase that has been included in the bill for HCBS services only, for salary increases and better training for Direct Support Professionals working in all facilities, and to preserve sheltered workshops by removing from grants to states to develop programs for competitive integrated employment any requirement to "phase out" 14(c) certificate programs.

Please stay tuned.
New Data Suggests 1 in 44 US Children Affected by Autism
By Lindsey Tanner, Associated Press, December 2, 2021
New autism numbers released Thursday suggest more U.S. children are being diagnosed with the developmental condition and at younger ages.

In an analysis of 2018 data from nearly a dozen states, researchers at the Centers for Disease Control and Prevention found that among 8-year-olds, 1 in 44 had been diagnosed with autism. That rate compares with 1 in 54 identified with autism in 2016.

U.S. autism numbers have been on the rise for several years, but experts believe that reflects more awareness and wider availability of services to treat the condition rather than a true increase in the number of affected children.

A separate CDC report released Thursday said that children were 50% more likely to be diagnosed with autism by age 4 in 2018 than in 2014.

“There is some progress being made and the earlier kids get identified, the earlier they can access services that they might need to improve their developmental outcome,” said CDC researcher and co-author Kelly Shaw.

Geraldine Dawson, director of Duke University’s Center for Autism and Brain Development, said
the new estimate is similar to one found in research based on screening a large population of children rather than on those already diagnosed. As such, she said it may be closer to reflecting the true state of autism in U.S. children than earlier estimates.

The CDC reports are based on data from counties and other communities in 11 states — some with more urban neighborhoods, where autism rates tend to be higher. The rates are estimates and don’t necessarily reflect the entire U.S. situation, the authors said.

Autism rates varied widely — from 1 in 26 in California, where services are plentiful, to 1 in 60 in Missouri.

Overall, autism prevalence was similar across racial and ethnic lines, but rates were higher among Black children in two sites, Maryland and Minnesota. Until recently, U.S. data showed prevalence among white children was higher.

Federal Judge Freezes COVID Vaccine Mandate for All Health Care Workers
By Jordyn Reiland, Skilled Nursing News, November 30, 2021

A federal judge in Louisiana issued a nationwide preliminary injunction Tuesday, freezing the start of President Biden’s COVID-19 vaccine mandate for health care workers across the country.

Judge Terry Doughty of the U.S. District Court for the Western District of Louisiana issued the decision — which affects more than 10.3 million health care workers in the United States — just a few weeks after a group of 14 states filed a federal lawsuit in Louisiana against the mandate.

According to the Centers for Medicare & Medicaid Services (CMS), 2.4 million health care workers are currently unvaccinated, the ruling states.

Mandate guidance issued by CMS stipulates health care workers in any setting that receives Medicaid and Medicare reimbursement, including nursing homes, must be fully vaccinated against COVID-19 by Jan. 4 — the deadline for the first dose of the two-dose Moderna and Pfizer vaccines was set for next week.

The scope of the injunction, Doughty notes, is nationwide except for Alaska, Arkansas, Iowa, Kansas, Missouri, New Hampshire, Nebraska, Wyoming, North Dakota and South Dakota, since these 10 states are already under a preliminary injunction from a different federal judge.

On Monday a federal judge in Missouri issued a ruling blocking the mandate as part of a separate lawsuit involving those 10 states.

Both rulings are likely to be appealed as previously indicated by the Biden administration. Should either ruling be appealed, the issue would be heard by federal appeals courts.

Bill would Improve Services for People with Intellectual, Developmental Disabilities
The Ripon Advance, November 30, 2021

Bipartisan legislation introduced by U.S. Rep. Brian Fitzpatrick (R-PA) would designate people with intellectual and developmental disabilities (I/DD) as a medically underserved population to ensure they receive improved healthcare services.

“We must do more to ensure that all Americans have access to basic health care, especially those living with intellectual and developmental disabilities, who often have more complex medical needs,” said Rep. Fitzpatrick. “I’m proud to support this bipartisan legislation which seeks to remove the barriers to care that exist for those within the I/DD community so that they can lead healthy lives.”

Rep. Fitzpatrick on Nov. 23 cosponsored the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population (HEADs Up) Act of 2021, H.R. 6075, with bill sponsor U.S. Rep. Seth Moulton (D-MA).

If enacted, the bill would direct the Health Resources and Services Administration (HRSA) to make the designation, which would give Americans with I/DD access to new primary care and specialist services, incentivize new research, and authorize more favorable reimbursement rates for providers who treat them, according to a bill summary provided by Rep. Fitzpatrick’s staff.

Specifically, the designation as a special medically underserved population would open up more than 25 government programs within the HRSA and other federal agencies for participation by the I/DD population, including federal funding for health centers and public health infrastructure; eligibility to apply for federal funding to develop and operate Community Health Centers; access to loan repayment and training programs in HRSA’s Workforce Development and Training Programs; and incentives for physicians, among others.

“There are clear cracks in America’s healthcare system, and one example is the way we treat those among us who require the most complex care,” Rep. Moulton said. “Citizens with intellectual and developmental disabilities deserve quality treatment just like everyone else, and America has an obligation to provide that.”

Shop at Amazon? Use Amazon Smile instead, and 0.5% of your purchase price will go to VOR!

  1. Just go to instead of the regular 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. Then paste a link to AmazonSmile into your bookmarks, and use that link every time you shop!

Thank you for supporting VOR!
State News:
A Longer Look at Developmental Disability Waiting List Long Overdue
By Robert Miller, The Oklahoma City Sentinel, December 1, 2021
Introduction from Ellyn Hefner, columnist for The Oklahoma City Sentinel:

This month I am sharing a story about the Waiting List. The state of Oklahoma offers services to citizens who have intellectual disabilities to improve their lives. These services are offered INSTEAD of having to go into an institution.These services are referred to as “Waivered” services and are provided in the person’s home and community. The agency that oversees these services is DHS (the Department of Human Services) and the division is DDS (Developmental Disabilities Services)

When a person applies for these services they are placed on a “waiting list”. Currently there are over 5,600 Oklahomans on the waiting list. At my request, Robert Miller, a dad who has a child on the waiting list shares his story. His story is like mine, my son was removed from the waiting list and then put back on at the end of the list after I reached out to find out where he was on the list. My son has been waiting for 15 years.

Now, here is Mr. Miller’s story:

Have you ever waited in a really long line only to find out that you were not in line at all? That is exactly what happened to my daughter, Bailey, in our quest to secure developmental disability services for her through the Department of Human
Services (DHS), which manages Medicaid home and community based waivers that provide daily living supports like help getting dressed, eating meals and taking medications.
We first put Bailey on the list in 2002. The estimated wait time then was 12 years. About the time her name should have been approaching the top of the list, we contacted DHS to determine next steps only to find out that she had been removed from the list in 2003. DHS claims our family did not respond to a letter they sent, but they have no record of when that letter was sent or even what it was requesting.
Bailey is back on the waiting list again. We are five years in to the 13 year wait this time and she is 27 years old now. I have serious concerns about whether the outcome is going to be any different this time around after learning about a government report that shows no progress has been made to serve the 5,800 Oklahomans with developmental disabilities, like my daughter, who are currently waiting to receive services and supports that will help them live more independently at home in the community.

Missouri Adopts a New Law to authorize subminimum wages for disabled employees as a failsafe solution to challenges against a controversial federal law
By Madison Hopkins, Kansas City Beacon, November 24, 2021
A new Missouri law allowing employers to continue paying some people with disabilities less than minimum wage has positioned the state at the forefront of a national debate over disability rights in the workplace.

Part of a wide-ranging piece of legislation signed by Gov. Mike Parson in July, the rule directs the state to develop its own version of a federal program that allows wages as low as pennies per hour.

Roughly 5,000 employees work at facilities with subminimum wage certificates in Missouri – called sheltered workshops because workers are kept separate from others. Missouri has the second-highest number of sheltered workshops in the country, with 95 operating locations.

Though the New Deal-era law that governs such employment was considered progressive when it was enacted, it has come under increasing criticism in recent years.

On one side of the debate are employers – along with many workers with disabilities and their families – who say the point of sheltered workshops isn’t pay, but rather the community and
sense of purpose for people who wouldn’t succeed in the traditional workforce. They worry that without wage-law exemptions, sheltered workshops will be forced to close.

On the other side, disability rights advocates argue the practice is outdated, discriminatory and unnecessary when many resources are available to help employees with disabilities succeed in integrated community environments.

The push to ban subminimum wage for people with disabilities has gained momentum in recent years. At least 12 states have done so, and several more are considering it. At the federal level, lawmakers have made several attempts to wipe out the exemption, but none has succeeded.

Dan Gier, director of sheltered workshops for the Missouri Department of Elementary and Secondary Education, said the new state law is meant as a fail-safe for sheltered workshops in case a challenge to the federal law succeeds.
“It would be quickly adaptable and there would be no change at the workshop level,” Gier said. “We feel very confident we can do that.”

Missouri’s legislation could also end up serving as a guide for other states.

North Carolina DHHS Announces New Dental Health Training Program for Adults with I/DD
Press Release from NCDHHS, December 2, 2021

The North Carolina Department of Health and Human Services today announced a new dental public health training program: Oral Health Training Program for Adults with Intellectual and Developmental Disabilities (I/DD). The program, launched by NCDHHS’s Division of Public Health’s Oral Health Section, aligns with its mission to improve the oral health of North Carolinians and to support dental public health workforce development.

Designing a program specifically for care providers of adults with I/DD living in community Intermediate Care Facilities or Group Homes was paramount because of the critical role care providers have in supporting their residents’ health.

“People with I/DD experience chronic diseases at an earlier age and at higher rates than those without I/DD, making this dental public health training doubly valuable as it connects oral health to overall health,” said Mark Benton, Assistant Secretary for Public Health.

“Adults with intellectual and developmental disabilities often have poorer oral health, including untreated tooth decay and gum disease,” said Robin Zeigler, Adult Oral Health Coordinator for OHS. “Because evidence shows an association between oral health and chronic diseases, such as diabetes and cardiovascular disease, there is good reason to address oral health in this vulnerable population.”

Connecticut Town Faces a Landmark Fine in Housing Discrimination Case
By Kay Perkins, Connecticut Public Radio via The Connecticut Mirror, November 29, 2021
The U.S. District Court for the District of Connecticut has handed down one of the largest fines ever — $5 million — in a housing discrimination case against the town of Cromwell.

The suit involved Cromwell’s attempts to shut down a group home for people with mental health disabilities. Cromwell was found in violation of the Americans with Disabilities Act and the Fair Housing Act.

The October ruling upheld existing precedent; the amount awarded in damages is what sets the case apart.

“It’s such an incredible message to get from a jury. And one that hopefully sends a message out to others, too: ‘You can’t do this. This is behavior that will be punished,’” said Tara Ramchandin, an attorney for Gilead Community Services.

Gilead is a nonprofit organization that provides support to individuals with mental health disabilities, including residential group homes like the one in Cromwell.
Gilead first placed residents in the Cromwell home in spring 2015. The community backlash was almost immediate. Dan Osborne, chief executive officer of Gilead, says the public forum they held shortly after purchasing the home was one of the most challenging nights of his career.

“The message was loud and clear, and at one point was spoken specifically in these words: ‘We don’t want you here.’ Followed up with: ‘Why would you want to be somewhere you’re not wanted?’”

The town pursued all possible avenues to shut down the home, including what Gilead’s attorneys characterized as “technicalities.” Cromwell denied Gilead’s licenses, refused to renew their tax exemption, issued a cease-and-desist order and petitioned the State Department of Public Health.

Connecticut - Group Homes Owner Threatens Striking Workers' Jobs
Houston Chronicle, December 2, 2021

Group home workers in Connecticut who have been on strike for nearly two months said Thursday that owner Sunrise Group has threatened to permanently replace them as they continue to seek a new contract with better wages and health care benefits.Unionized workers rallied outside Sunrise's group home in Hartford with state legislative leaders and representatives of Connecticut U.S. Sens. Richard Blumenthal and Chris Murphy.

About 150 members of the New England Health Care Employees Union, District 1199, SEIU, who work at Sunrise’s 28 group homes for people with disabilities in Connecticut have been on strike since Oct. 12.

Union officials said a Sunrise lawyer notified them Wednesday that the company plans to hire permanent replacement workers.

Workers say Sunrise has not sought any of the $184 million the state has made available to group homes across the state to improve contracts and avoid strikes.

Sunrise workers say they're making less than $18 an hour, the company's family health insurance plan can cost $6,000 a month and they have no pensions.

Annastacya Heyliger, who has worked at Sunrise's Hartford group home for five years, said at the rally that she can't afford the health insurance plan. She said she caught the coronavirus at work and couldn't go to a doctor because she has no insurance.

“All I’m asking for is that I can love my daughter and take care of my family with a livable wage,” she said.

NYS Group Homes Temporarily Close as OPWDD Tries to Fill 537 Job Vacancies
By Berkeley Brean, WHEC-10 News, November 30, 2021

The state agency that runs group homes in New York, the Office for People With Developmental Disabilities (OPWDD), has such a huge staffing shortage, it's temporarily closing some of its homes with virtually no notice to the people who live there or their families.One mother went back to her son's home to protest what happened. News10NBC Chief Investigative Reporter Berkeley Brean walked with Torie Garrison up to the front door of her son's group home in West Sparta, just south of Mt. Morris.

The doors are locked and the curtains are drawn.

21-year-old Zachary Garrison's room is in the front. Zachary has autism and he lived there for more than two years, but on the eve of Thanksgiving, the OPWDD packed up his belongings and moved them out.
Brean: "So they called you in October saying this might happen."
Torie: "Yes."
Brean: "Then you got a call last Wednesday saying its going to happen."
Torie: "Yes. That day."
Brean: "The day before Thanksgiving."
Torie: "Yes."
Torie said she feels overwhelmed, angry, sad and scared.
"Pretty much every emotion that any parent would feel if they're in this position," she said.

In a statement emailed to us, OPWDD told us it has "a workforce shortage of crisis proportions." One way to deal with that is "a temporary consolidation of group homes." But those group homes, they say, will stay closed "until they achieve appropriate staffing levels."

Assemblywoman Marjorie Byrnes (R, 133) said 11 group homes have closed since October and five are in her Finger Lakes district. The union that represents group home employees said one home in Monroe County closed in the spring and three more are on the list now.

OPWDD has temporarily suspended 11 group homes in the Finger Lakes region over the past month across Seneca, Ontario, Monroe, Wayne and Livingston counties.

Arkansas - State Investigates Managed Care Company Empower for Alleged Medicaid Fraud
By Benjamin Hardy, Arkansas Times, December 3, 2021

Empower Healthcare Solutions, a managed care organization that serves roughly 20,000 high-need Medicaid beneficiaries in Arkansas, is under investigation by state regulators and the attorney general’s office for allegedly defrauding Medicaid.

In a letter sent to the state’s Office of Medicaid Inspector General on Tuesday, Deputy Attorney General Lloyd Warford said a full investigation into allegations of fraud was only now getting under way. But an initial review found “sufficient credible evidence” to support the suspension of Empower from the Medicaid program, he wrote.

The Office of Medicaid Inspector General notified Empower the next day it was being sanctioned and would be subject to enhanced monitoring. The inspector general stopped short of suspending all payments to the company, however, “due to the fact Empower currently serves over 20,000 Medicaid beneficiaries who depend on Empower for continuity of care.”

The letter from Warford, the deputy attorney general, gives limited information about the nature of the allegations. Empower is accused of misappropriating money claimed as “community investment” expenses — a type of capacity-building expenditure allowed under the PASSE program. Almost $4.7 million in community investments claimed by Empower in 2020 have “no support,” the letter says.

The letter also says a group of 25 behavioral health providers “were collectively overpaid approximately $3.7 million” by a program set up by Empower in the early months of the COVID-19 pandemic. At the time, medical and community services across the country were being interrupted by shutdowns.

Empower created a “stabilization” program designed to give short-term payments to the 25 behavioral health providers that treated the largest number of the PASSE’s members. But an actuarial consultant hired by Empower determined those providers were collectively overpaid some $3.7 million, the letter says.

Empower also allegedly protected some providers from its internal audit process, Warford wrote.

What Happened to California’s Developmental Centers?
By Tracy Salcedo, Sonoma Valley Sun, December 1, 2021
The Sonoma Developmental Center (SDC) holds a special place in the minds of residents of Sonoma Valley. We like to think it is unique — extraordinary —because of its legacy of caring, its iconic architecture, and its pivotal role in the community as an employer and institution.

It’s not. As far as the state of California is concerned, the SDC is just another DC to shut down and dispose of, part of a decades-long movement away from institutionalizing the developmentally disabled in favor of embedding them in community homes.

But the Eldridge site does have some exceptional features compared with other developmental centers. A wildlife corridor runs through it, and its future will be shaped by a much-touted, never-been-done-before, community-driven specific planning process.

How will this process change what ultimately happens to the SDC? It’s impossible to know as yet, but one way to consider both the process and the outcome is to take a look at what happened to the other developmental centers after their closures.

The Lanterman Act

Closure of all of California’s developmental centers emanates from what’s commonly called the Lanterman Act, legislation dating back to the 1960s (and revised over the years) that essentially ended the “involuntary detention of all but the most gravely mentally ill.” The bill and its amendments remain controversial: Critics charge that the act has caused an increase in homelessness and jeopardized the well-being of former clients; proponents maintain it has integrated the developmentally disabled more deeply into local communities and reduced the costs of care. Regardless of the pros and cons, closures of the centers have profoundly impacted the developmentally disabled and their families.

The closures have also had major impacts on the communities that surround them. Large tracts of land and expansive campuses, many with historic status, have essentially “gone on the market” as real estate transactions for California’s Department of General Services (DGS), the state’s self-proclaimed “business manager.” Protocol dictates DGS first offer these properties to other state entities, such as universities. If such a transfer is not forthcoming, the property is put up for sale, with the goal of making the best deal possible.

Year-End Giving for VOR

For those members who have been blessed to reach their seventies, and who will be required to take a distribution from their IRA's by December 31, 2021, please consider using this opportunity to make a contribution to VOR.

VOR Bill Watch:
[Please click on blue link to view information about the bill]


Modifying the Build Back Better Act to include language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services, and to remove any provisions that would phase out or eliminate 14(c) wage certificate programs.

H.R.6075 - 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.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.


H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.

H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 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.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.
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.

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