October 7, 2022

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.

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VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities


VOR's Fall Membership Campaign

For nearly forty years, VOR has spoken out in support of high quality care and human rights for all people with intellectual and developmental disabilities, complex medical conditions, and autism.

Once again, we are asking our members to reach our to friends, family, and members of their communities and ask them to join the community that is VOR.

This year, we hope to expand our base, and include more people whose loved ones receive services in private ICFs or through home and community-based services, or who participate in14(c) Employment Programs. 

VOR supports CHOICE

in all forms of residential care, day program activities, and employment.

Click here, to help us to help you!

National News:

SCOTUS Watch: Health and Hospital Corp v. Talevski

The Rights of Medicaid Recipients are at Stake

On November 5, 2022, the Supreme Court of the United States will hear arguments in Health and Hospital Corp v. Talevski. This case could overturn precedent and take away the rights of recipients of Medicaid services to take legal action in a matter of deprivation of rights against a provider under the Spending Clause of the Federal Nursing Home Reform Act of 1987 (42 U.S.C. § 1983), a federal law authorized pursuant to Congress’ Spending Clause powers that requires nursing homes that accept Medicare and Medicaid funds to protect the rights of nursing home residents.

Below are several articles that help describe the case and its potential ramifications, along with links to some of the amicus briefs that have been filed before the Court. 

Is The Supreme Court Poised To Wipe Out Legal Rights For Medicaid Beneficiaries?

By Sara Rosenbaum and Timothy Jost, Health Affairs, May 20, 2022

Hours before Politico’s leak of the Supreme Court’s draft abortion decision became public, the Court took a step that, in the context of equal justice under law, could prove virtually as radical. On Monday, May 2, the Court agreed to hear Health and Hospital Corp v Talevski, a Medicaid nursing home rights case. And on May 6, accompanied by multiple amici, the State of South Carolina filed a petition for certiorari, along with a motion to expedite, in Kerr v Edwards; this case involves Medicaid’s “free-choice-of-provider” guarantee, whose meaning and reach have long been a subject of dispute. 

Depending on the outcome, the Court could use either or both cases to strip Medicaid beneficiaries and the providers that serve them—and, by extension, the beneficiaries of other state-administered health and welfare programs enacted pursuant to Congress’s constitutional Spending Clause powers—of access to court to prevent state officials from unlawfully denying, reducing, or terminating benefits guaranteed under federal law.

The implications of stripping judicial protections from those who receive benefits under state-administered public welfare programs are extraordinary. Building on philosophical groundwork laid over several decades—notably by Justices Antonin Scalia and Clarence Thomas— such an action by the Court could overturn longstanding legal precedents that permit beneficiaries and providers to seek the aid of courts when public assistance rights appear to be unlawfully threatened. There is no guarantee that plaintiffs in such cases prevail on their claims, and many do not. But many others have gone on to win, protecting untold numbers of children and adults from illegal and harmful conduct. Through this long line of cases, the poorest Americans have been given the right that others enjoy: to seek the help of the courts when rights to essential services such as medical care and food are threatened.

Were the Court to overrule these cases, its decision would affect the millions of Americans with limited means who depend on Spending Clause programs. Indeed, because the essence of legal entitlement is the ability to protect one’s benefits against arbitrary, unlawful termination or denial, the very feature that puts Medicaid on a par with Medicare or employer-sponsored health plans (both of which confer judicial enforceable rights) would disappear. Moreover, this result would be contrary to the relevant statutory law.


Marion County Agency wants SCOTUS to Strip Protections for Millions of Vulnerable Americans

By Tony Cook and Johnny Magdaleno, Indianapolis Star, October 6, 2022

Marion County's public health agency is asking the U.S. Supreme Court to strip legal protections for millions of Americans in a monumental case that experts say could dramatically weaken federal benefit programs.

The Health & Hospital Corp. of Marion County wants the nation's high court to throw out a lawsuit over poor care at one of its nursing homes in a case that could also bar beneficiaries of safety net programs like Medicaid from suing if their rights are violated. 

In all, more than a quarter of the U.S. population depends on federal programs that could be affected.

“They just want to get rid of a headache,” said Lucas Waterfill, a Medicaid recipient from Indianapolis who has cerebral palsy. “For us, it’s standing up for our lives.”

But a decision in Health & Hospital's favor would have repercussions far beyond Indianapolis — or Indiana. It would, according to legal experts, effectively take the "entitlement" out of the nation's entitlement programs.

"It's the ability to enforce your rights that makes them rights," said Sara Rosenbaum, a professor of health law and policy at George Washington University. "Once you lose the right to hold, in this case, public officials accountable, the notion that you have an entitlement just becomes an empty promise."

The case’s impact could be enormous.

States have a long history of trying to deny federal benefits to those entitled to them, especially in the Medicaid program where states share in the cost.

For decades, Americans in need of services have relied on a federal civil rights law to protect their benefits.

The law, passed in the wake of the Civil War to protect the rights of Black Americans, gives citizens broad rights to sue when their federal rights are violated. And past U.S. Supreme Court decisions have found that beneficiaries of public assistance programs can rely on the law to sue when benefits are improperly withheld. 

Read the full article here

Further reading:

From the Constitutional Resource Center

From Ballotpedia

Amicus Brief fro the California Medical Association

Amicus Brief filed by The Arc, Bazelon Center, Disability Rights Education & Defense Fund, American Association of People with Disabilities, and the Center for Public Representation

State News:

We would like to thank Rita Winkeler, Secretary of VOR and President of the Murray Parents' Association, and Representative Charlie Meier of Illinois for their contributions to the following story.

Illinois - 'People Look the Other Way': Mother Begs for Better Oversight of Group Homes for People with Disabilities

By Paula Vasan, KDSK News, October 5, 2022

A mother’s love is limitless. It means fighting for your child.

“We had 30 to 40 ER visits in less than three years," said Peggy Strong. "My daughter almost died.” 

She said it was because of a problem her daughter Marjorie couldn’t tell her about. 

“She also is non-verbal. She is incapable of fending for herself," said Strong.

It's a problem Strong said has been hiding for too long behind closed doors. 

“People look the other way. They neglect them. They don't give them what they need," she said.

For nearly a decade, Marjorie lived in Pinckneyville, Illinois, at what’s known as a Community Integrated Living Arrangement (CILA), a taxpayer-funded group home licensed by the state and run by a private organization. They’re for people with intellectual and developmental disabilities, designed to better integrate them into society. 

Strong said case managers told her it was the best option. Red flags seemed to prove otherwise. 

“Every system in her body — respiratory, pulmonary, digestive — they were all conflicting and fading. She was failing," said Strong.

Strong said her daughter needs around-the-clock care and wasn’t getting it. Marjorie has a rare genetic disorder known as Phelan-McDermid syndrome. It causes severe intellectual and physical problems. She has muscular dystrophy. A stomach ulcer meant she eventually couldn’t keep food down. 

“I don't think she was getting fed," said Strong.

Doctors told her to plan for the end. “We had hospice on standby," she said. 

Read the full article, with extended videos, here

Missouri - Family Blindsided by Latest Change in State-Funded Mental Health Services

By Jesse Bogan, St. Louis Post-Dispatch, October 7, 2022

Jason Chambers suffers from major mental illnesses, but he knows he’s in a nice place. He lives at home here, with his parents, in a large house in the 300 block of Strawbridge Drive. A piano is gated off so a big, friendly dog doesn’t get to it.

“They take good care of me,” Jason, 35, said Thursday.

“He is a full-time job, just trying to get his care,” said his father, Reginald, 64, a former St. Louis firefighter.

Especially last week, after their in-home aide said she may stop coming by to help Jason, who qualifies for state-funded services.

Her wages had increased in recent years, but Reginald said she told him that the state was cutting hours. Reginald said she told him that it may not be worth making the 50-mile round trip anymore, dropping below four hours a day, four days a week.

He said she told him they may need to find another provider to help them.

Reginald said they felt blindsided. He and his wife, Regina, a retired nurse, said they hadn’t received any letters from the state about changes. As with other families in similar situations, they know how hard it is to find a good fit for in-home help. “Once you finally get the right person, it works out fine,” Reginald said.

To get answers, he made a flurry of phone calls to elected officials. He said he tried, unsuccessfully, to reach the director of the Missouri Department of Health and Senior Services.

The first letter he received from the state was postmarked Sept. 30 and only arrived a few days ago. There was no date on the letter or clarification about the specifics of his son’s care. There was no signature, just letterhead with the names Gov. Michael Parson and Acting Director Paula Nickelson on it.  The letter states that Missouri legislators are responsible for developing a balanced budget and that this year the budget included an increase to Home and Community Based Services provider rates.

“This increase was passed with the intent to provide HCBS providers with additional resources needed to create a more stable workforce to serve participants like yourself,” the letter states.

But higher wages apparently means fewer hours.

“Your care plan exceeded the new cost maximum and had to be modified to meet the new cost maximum requirements,” the letter said, adding that the changes could not be appealed.

Read the full story here

Arkansas - SLS Community in Fayetteville Hopes to Make ‘Collective Impact’ on Neurodiverse Residents

By Stacy Ryburn, Northwest Arkansas Democrat-Gazette, October 2, 2022

A regional nonprofit group has a plan to provide neurodiverse adults with housing, work, recreation and services all in one location.

The group, Supporting Lifelong Success Community, plans to be part of a 231-acre development in the southern part of town, between Kessler Mountain Regional Park and Cato Springs Road. A concept shows rows of homes, a commercial area, outdoor spots for recreation and leisure, and facilities providing medical and basic services.

Ashton and Betts McCombs founded SLS Community in 2016. Their daughter, Anna, was diagnosed on the autism spectrum with pervasive developmental disorder at 2 years old. The family had difficulty finding services for Anna in Arkansas and placed her at institutions in Baltimore and Boston. Along the way, the couple met other families who similarly struggled to find services for their loved ones with neurodivergence.

Neurodiversity or neurodivergence refers to people with autism, Down Syndrome, or other intellectual and developmental disabilities.

McCombs said people with intellectual and developmental disabilities are no longer eligible for the programming and financial assistance they received under the federal Individuals with Disabilities Education Act once they turn 21. After that, they must turn to a labyrinth of government services. Those services vary greatly by state. He referred to the gap between services provided to neurodiverse children and adults as the "services cliff."

Neurodiverse adults often wait years to access services, he said. There are more than 3,000 residents on the waiver waiting list. Gov. Asa Hutchinson announced a plan in December to clear the wait list by 2025.

Read the full article here

New York - Group Home Workers Face Felony Charges; Police Say they told them Teen Resident Killed by Vehicle was Safe  

Daily Freeman, October 5, 2022

CLERMONT, N.Y. — Police on Wednesday identified the 14-year-old teen who was killed after being struck by a pickup truck on U.S. Route 9 on Sept. 23 as a resident of a facility for people with autism spectrum disorders and intellectual disabilities, and two of the facility’s staff members now face multiple felony charges after authorities say they made a false statement that morning that the teen was safe.

Police said 14-year-old Romelo Cruze, a resident at Devereux Advanced Behavioral Health at 40 Devereux Way in Red Hook, was walking in the roadway at about 4:50 a.m. on Sept. 23 when he was struck by a northbound 2007 Ford F550, police said. He was pronounced dead at the scene by responding Northern Dutchess Paramedics. Police have not identified the driver.

Police said at the same time as they were investigating the crash, Devereux reported Cruze was missing. Police said at 5:30 a.m. that day, two staff members responsible for his care provided investigators with business records and written statements indicating he was in good condition just 40 minutes after the crash occurred 4 1/2 miles north of the facility.

Authorities said they arrested Churchil Orodi, 30, and Beryl Orech, 36, both of Poughkeepsie, on Tuesday, Oct. 4, and charged them with endangering the welfare of an incompetent or physically disabled person and falsifying business records, both felonies. They added that Orodi and Orech were also both charged with making a punishable false written statement, a misdemeanor.


International News:

What the War Means for Ukrainians with Disabilities

By Amandas Ong, Al Jazeera, October 2, 2022

As the Russian invasion grinds into its eighth month, Ukrainians with intellectual and physical disabilities – as well as their carers – continue to encounter huge challenges in accessing the support they need.

According to two Brussels-based NGOs, the European Disability Forum and Inclusion Europe, some 2.7 million people with disabilities are registered in Ukraine. Of these, an estimated 261,000 have intellectual disabilities. Both organisations have documented a drastic deterioration in the quality of life for Ukrainians with disabilities.

Some are unable to access medication or food, while those with developmental disabilities have seizures or become aggressive while frightened

by shelling. In addition, wheelchair users or those with mobility issues are not able to access bomb shelters, so people with physical disabilities have no choice but to remain at home, leaving them at a disproportionate risk of death. Thousands more are believed to be trapped in care homes or poorly-maintained institutions, cut off from their communities and languishing in neglect.

Read the full article here

Direct Support Professionals -

The Nursing Shortage:

The Answer to America’s Nursing Shortage

By Ruth Reader, Carmen Paun, and Ben Leonard, Politico, October 4, 2022

Predictions of doom about the future of nursing grew, as hospitals reported critical staffing shortages during the Covid surges of 2020 and 2021.

But there are signs staffing shortfalls are dissipating as the federal and state governments send aid. And nursing remains a desirable profession to young people eager to replace hundreds of thousands of nurses expected to retire in the next several years.

Is the crunch easing? Enrollment in entry-level nursing programs increased by 3.3 percent in 2021, the American Association of Colleges of Nursing reported. Enrollment in doctor of nursing practice programs was up 4 percent.

That builds on 20 years of enrollment growth, and nursing schools can no longer accommodate the high demand for spots. The association said schools turned away more than 76,000 qualified students in 2021.

Also, salaries for traveling nurses are now dropping, suggesting demand for their services has declined.

Legislation pending in Congress by two Democrats, Rep. Lauren Underwood of Illinois and Sen. Jeff Merkley of Oregon, would keep the money flowing by creating a competitive grant program to help nursing schools prepare for future public health emergencies. Underwood is a registered nurse.

States are also spending to add capacity. Last month, Missouri approved $3 million in grants to help 11 schools.

But still: Hundreds of thousands of nurses are approaching retirement. How the Covid-19 pandemic affects nursing is the core issue if it either prompts more nurses to retire early or fewer people to enter the profession.

Read the full article here

University of Michigan Nurses Approve Contract with $5K Bonuses, 22.5% Raises Over 4 Years

By Christina Hall Kristen and Jordan Shamus, Detroit Free Press, October 3, 2022

Michigan Medicine nurses have approved a four-year, $273 million contract with University of Michigan Health after months of working without a new agreement in place.

Nurses represented by the University of Michigan Professional Nurse Council, a local bargaining unit of the Michigan Nurses Association, approved the new contract that includes:

  • A 22.5% raise during the four years of the contract.
  • A $5,000 bonus for each nurse this year. Current nurses still employed at Michigan Medicine will receive a $2,000 retention bonus March 31, 2026.
  • Elimination of mandatory overtime for most units, except for defined emergency situations.
  • Expanded staffing guidelines.

Nurse practitioners will be in a new salary step model. All other nurses will receive a 7.5% pay raise in the first year. All bargaining unit members will receive a 6% pay increase in the second year, 5% increase in the third year and 4% in the fourth year, according to a release from the university.


Special thanks to VOR's Jill Barker for the heads-up from her site, The DD News Blog 

Please share this offer with your loved one's

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

[email protected]

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.

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. 4779 & S. 1437 - 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. 3089 & S. 1544Accelerating Kids' Access to Care Act - This bill requires state Medicaid programs to establish a process through which qualifying out-of-state providers may enroll as participating providers without undergoing additional screening requirements. Among other things, a qualifying provider must (1) serve minors, or adults whose condition began as a minor; and (2) have previously been screened for Medicare participation or for participation in the Medicaid program of the state in which the provider is located.

S. 4102 - SSI Savings Penalty Elimination Act - To amend title XVI of the Social Security Act to update the resource limit for supplemental security income eligibility.

H.R. 3733 - Essential Caregivers Act of 2021 - To amend titles XVIII and XIX of the Social Security Act to require skilled nursing facilities, nursing facilities, intermediate care facilities for the intellectually disabled, and inpatient rehabilitation facilities to permit essential caregivers access during any public health emergency under the Medicare and Medicaid 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. 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 & S. 3238 - 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.

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.6860 & S.3417 - The Latonya Reeves Freedom Act - Supporters of this bill consider it to be the Disability Integration Act of the 117th Congress. The bill calls for the phasing out of intermediate care facilities for individuals with Intellectual Disabilities.

Help Us Help:

Families of Individuals with

Severe/Profound I/DD and Autism

Need a Voice in Washington, D.C.

For Four Decades, VOR Has Been That Voice

Please help us to continue to speak truth to power about the need for a diverse range of services, increased funding, and a full continuum of care to meet the needs of all people with I/DD and Autism.

This year, we have engaged in over ninety meetings with Congressional Staff. Together, we have advised on bills to protect Intermediate Care Facilities, to preserve 14(c) opportunities for individuals with I/DD, and to increase pay, training, and benefits for direct support professionals to alleviate the DSP crisis.

We have contacted attorneys from the Department of Justice’ Civil Rights Division concerning increased mortality rates among people with I/DD in wake of the closing of state operated intermediate care facilities in Virginia. We have met by Zoom with the same DOJ attorneys concerning their current action in to move people out of ICFs in Iowa. Just today, we met with leadership of the Administration for Community Living to discuss our mutual concerns and to offer paths forward to help serve all people with I/DD,

In order to have such a presence in D.C., we have had to change with the times. Covid made in-person meetings next to impossible. We have had to adapt to holding virtual meetings on Zoom or WebEx. In order to compete with larger, better-funded organizations, we have had to hire the lobbying firm of Health Policy Source to advise us on how best to approach the powers that be and to facilitate our access to congressional staff. This has cost us, but we feel this has been money well spent. Now, we are asking you to help support us in this effort.

Please click here to join, renew your membership, or contribute to VOR

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What's Happening In Your Community?

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