November 11, 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


Happy Veterans Day!

VOR would like to express our gratitude to all of our Veterans

for the strength, their service, their support, and their sacrifice.

Our Thanks to All Who Serve.

Sunday, November 13th is World Kindness Day

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We need your support to sustain our advocacy.

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Micki addressed VOR members at our 2022 Annual Meeting, telling the story of her 50 years of advocacy and philanthropy, starting with the birth of her son Robert, through her building of 25 homes for people with intellectual disabilities, and sharing her experiences, hopes, and fears as she navigated the political and financial landscape that defines the I/DD system today.

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From now until Thanksgiving, when you give a friend or family member the gift of a one-year membership in VOR,

you may give another gift membership for free!

This offer applies only to individual gift memberships. You must be a current member to take advantage of this offer, and your gift recipients must either be new members or people whose membership have lapsed for more than one year (before October 15, 2021).

You may give an unlimited number of memberships with this special offer!

(4 the price of 2, 6 for the price of 3, etc.)

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National News:

Lois Curtis, Whose Lawsuit Secured Disability Rights, Dies at 55

The Supreme Court decided in Olmstead v. L.C. that warehousing people with disabilities in mental institutions was discriminatory.

By Sam Roberts, New York Times, Nov. 10, 2022

Since she was a child, Lois Curtis was involuntarily moved from one mental institution to another. She had grown up with cognitive and developmental disabilities that had made it difficult for her family to care for her at home and for teachers to cope with her at school.

She would randomly wander away. Missing person calls to the police would land her temporarily in jail or in a psychiatric hospital. She had not yet celebrated her 12th birthday when she became a part-time patient at Georgia Regional Hospital, in and out of its child and adolescent mental health unit, where she was often kept sedated.

She was confined for nearly two decades in institutions, all along wishing that she could be transferred to a more suitable setting, like a group home in her own community.

Ms. Curtis ultimately became the lead plaintiff in Olmstead v. L.C., the case in which the United States Supreme Court ruled in 1999 that warehousing people with developmental disabilities in deficient mental institutions, when they are capable of being integrated into community settings in group homes or host homes, constituted discrimination under the 1990 Americans With Disabilities Act.

The 6-3 opinion by Justice Ruth Bader Ginsburg declared that “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement and cultural enrichment.”

The Court ordered state and local governments receiving federal funds to comply with regulations that required them to make “reasonable modifications” to provide more community support systems for disabled people, like counseling, housing assistance, job training, medical care and help in managing daily tasks like shopping and cooking.

Ms. Curtis died on Nov. 3 at her home in Clarkston, Ga., outside Atlanta. She was 55. The cause was pancreatic cancer, her aunt Shirley Traylor said.

Read the full article here

Special Investigation: When Schools Use Force

Controversial & Often Used, These Little-Known Practices Cause Harm, Even Death, Among U.S. Schoolchildren

With scant oversight, schools routinely physically restrain students or confine them alone in small rooms. Parents don’t always know. Abuses and discrimination occur. Children are traumatized, injured, even die.

By Emilie Munson, Matt Rochleau, Alex Putterman, Libby Seline, and Alexandra Kanik

Connecticut insider, October 27, 2022

A girl at a school in New York defied her teacher’s instructions to finish an assignment and crawled under a desk. The teacher held her in a physical restraint in a chair for seven minutes.

In West Virginia, a teacher shut a 4-year-old alone in a bathroom until his hysterical screams made staff members in other rooms take notice. His mother, who worked a few classrooms away, believes her son was held in that bathroom multiple times prior. Years later, the boy is traumatized and doesn't attend school regularly.

Then, there was a 13-year-old autistic boy, Max Benson, who was held face down on the floor by staff members at a school in El Dorado Hills, Calif., for one hour and 45 minutes while he struggled, vomited and urinated until he lost consciousness. The next day, he died.

“He died over a long period of time in pain and fear in front of all of his peers,” his mother, Stacia Langley, said in a recent interview. “If there’s something worse that can happen to someone, I don’t even want to think about it.”

Every day in public and private schools across the country, children are “restrained” – physically held by staff members, pinned to the ground, or bound by mechanical devices such as straps or handcuffs. Other times, students are kept in “seclusion,” confined alone in rooms ranging from windowless small supply closets and bathrooms to spaces resembling padded cells. 

Restraint and seclusion, which are legal in most districts nationwide, are commonly used when students – particularly those with disabilities – are in distress, engaging in self-harm or acting in ways that could cause injury to themselves or others.

These practices are used thousands of times per school day nationwide. They cause thousands of injuries to students and staff members each year. While rare, dozens of young people have died after being restrained or kept in seclusion over the past three decades; most deaths have happened in residential facilities or other settings that cater to children with special needs. An untold number of students suffer lasting emotional trauma, including for those who witness the episodes, experts say.

It got to the point where I would hear the screams and bangs daily,” a kindergarten teaching assistant said said. “I could hear the children saying ‘help me, let me out.’ ...
— Nicole Farjani, kindergarten teaching assistant 

Yet many people don’t know this happens at all. Parents have in some cases gone weeks or years without knowing their child had been regularly subjected to these controversial interventions. Some families found out only after a child died.


Not All Schools use Restraint or Seclusion Practices on S Students. Here’s a Look at Some Alternatives.

By Alex Putterman, Connecticut Insider, October 27, 2022

The first time Ed Nientimp heard about a model to reduce how often teachers and other staff physically restrain students or place them in seclusion rooms, he couldn’t help a little skepticism.

Nientimp had worked in special education for years and saw restraint and seclusion as unfortunate but necessary tools to calm students and keep classrooms safe. Even as he registered for training from Ukeru, a new crisis training program offering alternatives to the controversial techniques, he didn’t expect to be convinced.

“As a skeptic, I thought we would go and review the program and come back and report to the board and the superintendent that what we are doing is state-of-the-art and best practice,” said Nientimp, director of student services in the Millcreek Township School District in western Pennsylvania. “That was really the goal: to rule it out.”

But Nientimp found himself impressed by the training, and particularly by Ukeru data that showed dramatic drops in restraint and seclusion emerging from relatively simple tweaks to the way staff members think about student behavior and react to tense situations. He agreed to pilot the new practices in three Millcreek Township classrooms.

Sure enough, Nientimp recalls, restraints dropped dramatically in those classrooms during the trial period. The next year, Millcreek Township rolled out the system districtwide and restraints disappeared entirely.

Five years later, the district hasn’t recorded a single restraint in its public schools since, and Nientimp is a true believer.

“It’s almost so simple that it’s like, ‘Duh, why didn’t we do this [earlier]?’” he said. “We’re just more benevolent and more caring, and as a school that’s what we should be.”


State Data shows Hundreds Thousands of

Reported Restraint and Seclusion Incidents a Year

By Emilie Munson, Alex Putterman, Libby Seline, Alexandra Kanik, and Matt Rochleau

Connecticut insider, Novermber 2, 2022

Explore the laws, practices, and data collection in your state

Click here to see data in your state

November is National Family Caregivers Month


How We're Failing Parent Caregivers


Why It Matters

Watch Online November 18-30, 2022

November is National Family Caregivers Month, a time to recognize and honor family caregivers. The team that created this documentary are offering a limited-time opportunity to view their film

to raise awareness of caregiving issues, educate communities, and increase support for caregivers.

Tickets are $10

Click here for more information

Please note that the proceeds of this screening do not go to VOR,

We are sharing an opportunity to view this film with our members.

Follow up on a previously reported story

Supreme Court to Hear Nursing Home Case That Could Affect Millions

By Farah Yousry, Side Effects Public Media via Kaiser Health News, November 7, 2022

When Susie Talevski sued the agency that managed her elderly father’s care before he died, she hoped to get justice for her family. She did not expect the case would grow into a national bellwether. A ruling against her could strip millions of vulnerable Americans of their power to hold states accountable when they do not receive benefits allowed by law.

“This case has taken on, really, a life of its own way beyond what I could have foreseen,” said Talevski, a resident of Valparaiso, Indiana.

Talevski filed a lawsuit in 2019 alleging that her father’s rights were violated at a nursing home where he lived to get care for his dementia.

“He went from being able to walk and talk … to not being able to move,” Talevski said. “[The nursing facility] treated my dad like trash, like a dog. In fact, dogs are treated better than that.”

In court filings, the Talevski family claims that Gorgi Talevski was overmedicated to keep him asleep, his dementia wasn’t properly managed, and he was involuntarily transferred to different facilities hours away from the family’s home, which accelerated his decline. Her father died a year ago, in October.

Talevski sued the Health and Hospital Corp. of Marion County, the public health agency in Indiana that owns the nursing facility. The agency, known as HHC, declined to comment on the case but has denied any wrongdoing. In court documents, it argued that Gorgi Talevski was violent and sexually aggressive, which affected his care. It tried to dismiss the case, saying Talevski didn’t have the right to sue. But federal courts said the lawsuit could move forward.

So, the public health agency made an unexpected move. It took the case to the nation’s highest court and posed a sweeping question: Should people who depend on initiatives funded in part by the federal government — such as Medicaid and programs that provide services for nutrition, housing, and disabilities — be allowed to sue states when they believe their rights have been violated?

A ruling in favor of the HHC could mean millions of Americans who rely on federal assistance programs would lose that right. The Supreme Court is scheduled to hear oral arguments on Nov. 8.

“The reach of an adverse decision would be catastrophic,” said Jane Perkins, an attorney at the National Health Law Program. “It would leave these programs really standing out there without a true enforcement mechanism.”


Sotomayor Cuts To Heart Of Supreme Court Case That Threatens Social Safety Net

By Kate Riga, Turning Points Media, November 8, 2022

The Supreme Court heard a case Tuesday that the conservatives could use to significantly reduce the enforceability of major social safety net programs like Medicaid. 

The case, Health and Hospital Corporation of Marion County v. Talevski, is such an existential threat to programs that often help low-income, disabled and elderly people that activists had been working for months to get the case dropped before it reached the Court. They were ultimately unsuccessful. 

What grew out of a run-of-the-mill Medicaid dispute case has become a question of whether beneficiaries of government spending programs will continue to be allowed to sue in federal court if states violate their rights while providing these services. That pathway for accountability is referred to as private rights of action under Section 1983, and has been upheld by the Supreme Court multiple times.

For much of the arguments, the justices parsed the text of the statutes and probed congressional intent when the laws were enacted. Many of those on the Court have previously expressed hostility towards these kinds of rights of action.

Justice Sonia Sotomayor was one of the few to bring in the practical effects of cutting the 1983 suits. 

“We have standing precedent and you’re asking us to overrule it,” she said to Indiana’s solicitor general.

“Neither the federal government nor the states can possibly investigate and remedy every violation of these rights that are given to people. 1983 speaks clearly: they have a judicial remedy — why shouldn’t we just respect our precedent?” 

It’s the same point [several members of] congress hammered in their amicus brief, where they warned that nixing the lawsuits could be “disastrous.” 

“Neither federal nor state authorities have sufficient resources to provide complete oversight over the funding funneled into state programs,” the Democrats wrote. “Instead, their attention must often be dedicated to remedying systemic abuses, while preserving the option for aggrieved persons to seek individual remedies in federal court.”

Read the full article here

Congress Faces Pressure To Raise SSI Asset Limits

By Michelle Diament, Disability Scoop, November 11, 2022

Hopes are running high that Congress could act to update asset limits for Supplemental Security Income recipients for the first time in more than 30 years.

Disability advocates are pressuring lawmakers to include a bill known as the SSI Savings Penalty Elimination Act in a broad legislative package that’s expected before the end of the year.

Individual SSI beneficiaries can currently have no more than $2,000 in assets at any given time in order to retain their monthly benefits. Married couples are limited to $3,000 under rules that have not changed since the 1980s.

However, under a bill introduced earlier this year by U.S. Sens. Sherrod Brown, D-Ohio, and Rob Portman, R-Ohio, (S.4102) those limits would increase to $10,000 for individuals and $20,000 for married couples and SSI’s asset limits would be tied to inflation to ensure that they keep pace in the future.

“There’s strong bipartisan support to stop penalizing SSI beneficiaries who are trying to save for emergencies, and there’s more momentum to update SSI than ever before,” Brown’s office told Disability Scoop, adding that the senator is working to get the changes added to any year-end package.


State News:

Stopping the Churn: California and Other States Want to Guarantee Medicaid for Kids

By Phil Galewitz, California Healthline & Los Angeles Times, November 9, 2022

Before the covid-19 public health emergency began in 2020, millions of children churned on and off Medicaid each year — an indication that many were losing coverage because of administrative problems, rather than because their family’s income had increased and made them ineligible.

Several Western states, including California, are seeking to change that and weighing new continuous-enrollment policies for the youngest Medicaid members. The possibility of changing their decades-old enrollment rules comes as the states weigh the effects of changes brought on by the pandemic.

California lawmakers have approved a proposal for children who qualify for Medicaid to enroll at birth and stay enrolled until age 5, starting in 2025, pending federal approval.

Oregon has already secured approval for a similar policy. In 2023, when the public health emergency is expected to end, Oregon will become the first state to allow children who qualify for Medicaid to enroll at birth and stay enrolled until they turn 6, regardless of changes in their household’s income and without having to reapply.

“This is really a no-brainer in terms of supporting kids,” said Jenifer Wagley, executive director of Our Children Oregon, an advocacy group. She said that keeping kids insured — particularly at the youngest ages, when their bodies and minds are still developing — will ensure they don’t miss important checkups and care because of gaps in coverage.

Washington state in July asked the Biden administration for permission to provide continuous coverage to kids until age 6, and a decision is likely in the next few weeks. And New Mexico has sought public comments on a plan to keep kids enrolled until age 6 and is expected to seek federal consent later this year.


North Carolina - Judge's Ruling could help People with Disabilities; DHHS Not So Sure   

By Jason deBruyn, National Public Radio, November 7, 2022

A local judge's ruling could pave the way for sweeping changes to how North Carolina provides services to people with intellectual and developmental disabilities.

Advocates praised the ruling saying it will improve services for those who need it most. However, state health leaders worry about unintended consequences and say they might appeal the ruling. In addition, even if the ruling stands, there is no guarantee of additional funding, which could leave the goals set out in the order unfulfilled.

Broadly, the order, signed by Superior Court Judge Allen Baddour, calls for the N.C. Department of Health and Human Services to ensure that people with intellectual and developmental disabilities (I/DD) aren't forced into an institutional setting. Instead, the state must provide community-based services that allow people to stay in their homes near family, friends and a support network. 

However, state health leaders say they're already providing community based services. Earlier this year, DHHS unveiled its Olmstead Plan to assist people with disabilities. Named for the landmark Olmstead v LC Supreme Court decision, the plan outlines goals to better serve people with I/DD, including expanding in-home services, increasing the number of front line workers, and addressing disparities in access to services.

"We as a department are fully committed to community-based services for people with intellectual and developmental disabilities. I think we've shown that over the years," said Dave Richard, DHHS deputy secretary for Medicaid.

While the Olmstead Plan outlines major strategy goals, it doesn't set specific targets. Baddour's order, on the other hand, sets specific annual benchmarks for diverting people out of institutional and to community-based settings. The first deadline is January 1, 2024. 

The order also calls for a massive increase of the state's Innovations Waiver program. This waiver provides substantial funding to support people with I/DD who prefer to stay in their own homes and communities. Individuals or families can receive as much as $135,000 year in support, and the waiver is highly sought after by families in the I/DD community. Because of this, there is a waitlist of more than 16,000 people who qualify for the waiver, but aren't receiving the services because there isn't enough money. 

Read the full article here

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Direct Support Professionals!



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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

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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.

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