July 8, 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.
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
We are glad to be back after an all-too-brief Summer Vacation!

There's a lot to catch up on in this issue, and we hope you will take the time to read it all!
Of special interest to many of our long-standing members, the National Disability Rights Network has again been working with the Justice Department in Maine and New York. See State News, below.
The President's Council for People with Intellectual Disabilities

is holding its first virtual meeting of the new term on July 28, 2022 from noon to 4 pm (Eastern).
For more information about the PCPID, please click here.
To register for the meeting, please click here.
Medicaid Waiver Tracker

Kaiser Family Foundation has released a Medicaid Waiver Tracker, showing the status of approved and pending Section 1115 Waivers in every state. Please click here
National News:
ADA demonstrates commitment to improving dental care for patients with disabilities

The American Dental Association is taking steps to help dentists better care for patients with intellectual and developmental disabilities, including by collaborating with the American Academy of Developmental Medicine & Dentistry and the American Medical Association.

For the first time in history, the presidents of the ADA and AMA met to discuss long-standing health inequities for people with disabilities during the One Voice for Inclusive Health Conference held June 6 by the American Academy of Developmental Medicine & Dentistry, a nonprofit organization made up of health professionals, including dentists, committed to improving the quality of health care for people with intellectual and developmental disabilities.

ADA President Cesar R. Sabates, D.D.S and American Medical Association President Gerald Harmon, M.D. participated in a fireside chat, during which they acknowledged the historical shortcomings of dentists and physicians who were under educated, ill-equipped and unwilling to treat people with disabilities. The presidents renewed their commitment to address this national disparity of care and outlined plans to provide clinical competency training to both dental and medical students.

"The work is not over. AADMD looks forward to continued conversation and commitment from the AMA and ADA and will hold both organizations to their promise," said Allen Wong, D.D.S., Ed.D., president of the American Academy of Developmental Medicine & Dentistry and global clinical adviser for the Special Olympics' Special Smiles program, which provides oral health care information and screenings to participating athletes.

At the ADA, the Council on Advocacy for Access and Prevention has organized multiple webinars to help support dentists as they treat patients with disabilities.

Note: The following article pertains to managed care as it applies to long-term care for Medicare recipients. As more states move their long-term Medicaid recipients into managed care, this trend may apply to all managed care LTSS recipients.

Providers question managed care admissions in wake of denials
By Danielle Brown, McKnight's Long-Term Care News, June 22, 2022

With denials on the rise, some long-term care providers are questioning the worth of admitting residents covered by managed care plans because they doubt they’ll be reimbursed for their services.

“The reality is, when LTC providers admit managed care beneficiaries, they run the risk of not receiving reimbursement for care already provided,” Maureen McCarthy, founder, president and CEO of post-acute care advisory firm Celtic Consulting, wrote in a recent blog post.

A federal report released in late April found that Medicare Advantage organizations have often improperly denied or delayed services to beneficiaries to increase profits — even though payment requests met Medicare coverage rules. The investigation also found 13% of prior authorization requests that MA plans denied met Medicare coverage rules.

The findings spurred an immediate call for change from stakeholders and providers who have struggled to admit some residents due the issue in recent years.

McCarthy argued that the denial and appeal system is “convenient” for managed care insurers since they act as both “judge and jury” since providers are required to appeal denied services directly with the insurer. She added that there’s no option for the cases to be reviewed by an independent party after the appeals process is exhausted.

“With the recent uptick in enrolled beneficiaries, managed care insurers seem to have gained an upper hand, forcing providers to play by their rules,” she wrote, adding that it leaves providers to question the worth of admitting a managed care beneficiary.

Across US, Special Education Enrollment On The Rise
By Michelle Diament, Disability Scoop, June 24, 2022

The number of students with disabilities in the nation’s public schools is growing, according to new federal data.

There were 7.2 million students ages 3 to 21 served under the Individuals with Disabilities Education Act during the 2020-2021 academic year, accounting for 15% of all students.

That’s up from the 2009-2010 school year when 6.5 million children were served under IDEA, representing 13% of public school students.

The figures come from the Condition of Education, an annual report issued by the U.S. Department of Education’s National Center for Education Statistics that details the latest data on education in America.

Of those with disabilities during the 2020-2021 school year, the most common diagnosis was specific learning disability, which affected a third of students served under IDEA, followed by speech or language impairment and a classification known as “other health impairment.”

Autism affected 12% of students with disabilities, while 7% had developmental delay, 6% had intellectual disability and 2% had multiple disabilities.

State News:
Maine - Justice Department says Maine breaking law by over-institutionalizing disabled kids
By Penelope Overton, The Press-Herald, June 22, 2022

The U.S. Justice Department announced Wednesday that Maine is in violation of the Americans with Disabilities Act for over-institutionalizing disabled children in psychiatric hospitals, residential treatment facilities and even the state-operated juvenile detention facility.

Federal investigators have concluded that Maine unnecessarily segregates children with mental health and developmental disabilities even though federal courts have ruled they have a right to live and receive services in appropriate integrated settings, typically their homes and communities.

In a written statement issued later Wednesday, a spokeswoman for Maine Department of Health and Human Services said the agency agreed with the findings and that the failings of the state’s behavioral health system date back decades.

“The administration has worked over the past three and a half years to rebuild a system of services that was dismantled during the previous administration, dedicating new funding to strengthen behavioral health in every budget and re-establishing the Children’s Cabinet,” spokeswoman Jackie Farwell said.
The investigation was sparked by a complaint from Disability Rights Maine, an advocacy agency for disabled Mainers, on behalf of a group of children with disabilities, alleging these children cannot access needed community-based services, resulting in their institutionalization.

In a letter to Gov. Janet Mills and Attorney General Aaron Frey, Clarke said the Justice Department is hopeful that it can work with the state, but noted that it could sue the state for violating the Americans with Disabilities Act if it does not come into compliance.

Read the full Press-Herald article here (this includes the letter from the Justice Department)

Maine - Sweetser is closing its Bangor and Belfast group homes
By Christopher Burns, Bangor Daily News, July 7, 2022

Sweetser will close its Bangor and Belfast group homes later this year.

The nonprofit mental health care provider announced Friday morning it intends to stop providing adult developmental services in the two cities, saying the programs have been running at a loss for years.

“This program is no longer financially sustainable given the current reimbursement rates and staffing difficulties,” said Sweetser President and CEO Jayne Van Bramer, who took the helm of the agency in June. “This shift will enable us to refocus our efforts on our core mental and behavioral health programs Sweetser is known for in every corner of our state; providing support to nearly 20,000 children and adults each year.”

The group homes serve adults with developmental and intellectual disabilities and give them the opportunity to live in a community setting.

N.Y. agencies targeted in class-action suit over hospital discharge delays for people with disabilities
By Cindy Schultz, Albany Times-Union, June 26, 2022

A federal class-action suit filed last week charges that the state Department of Health (DOH) and Office of People with Developmental Disabilities (OPWDD violate the rights of hundreds of New Yorkers with developmental disabilities each year by keeping them in restrictive institutional settings unnecessarily.The case, filed June 16 in the U.S. District Court for the Southern District of New York by Disability Rights New York (DRNY), the Manhattan-based Kasowitz Benson Torres law firm and Mental Hygiene Legal Service (MHLS), names eight individuals with disabilities who against their wishes are locked away in hospital rooms or prison-like facilities despite having been approved for placement in community-based housing.

DOH and OPWDD, which jointly operate New York’s Medicaid program for individuals with developmental disabilities, are required by federal law to develop specialized community-based residential programs and services for people with developmental disabilities in order to provide care in the least restrictive environment possible.

But many patients eligible for these programs are kept in hospitals, nursing homes, and other inappropriate facilities for prolonged periods, often years, according to state data cited in the complaint.
“We are talking about a statewide crisis. People who are approved for community-based services languish in hospitals, nursing homes, and intermediate care facilities. These are our family members who want to be part of their communities. Instead, they are forced to remain segregated in institutional settings.” Disability Rights NY Executive Director Timothy A. Clune said.

The eight individuals seek to represent a class of all similarly situated individuals with disabilities who are approved by OPWDD for community-based services but are instead institutionalized due to the state’s failure to provide community-based services in a timely manner, the complaint states.

Complex case discharge delays are a growing challenge for the mental health system across the U.S. It particularly impacts patients with behavioral health or developmental disabilities who have co-occurring conditions.

Delays are often attributed to difficulty finding an appropriate placement as well as lengthy administrative processes, according to a 2021 report from the Healthcare Association of New York State.

"Our system of care has a design flaw — it is primarily designed for people with a clear path, for those who do not have complex care needs upon discharge," the report states.

OPWDD simply doesn't have adequate mechanisms to transfer people with complex needs, according to the lawsuit.

Minnesota - Group home closures put many disabled Minnesotans at risk, advocates say
By Sarah Gelbard, MPR News, June 28, 2022

Minnesotans with a range of disabilities face a worrisome future as a wave of group home closures hits the state, driven by staff shortages and low wages for direct support professionals, advocates say.
More than 170 group homes across Minnesota have closed since the fall, said Sarah Abbott, a director at ACR Homes, which serves residents who need wheelchair-accessible housing and individualized medical care.

That’s more than 4 percent of the state’s group homes closing in less than a year, according to ARRM, a Minnesota nonprofit that represents home and community-based service providers.

Abbott joined staff, parents, family members and disabled residents at a rally Friday outside the governor's residence in St. Paul to get their concerns in front of Gov. Tim Walz and press for a special session for more funding.

“When we’re asking people to sign up to do physical labor working in challenging health care environments, and at a wage that is less than what you can get working at a fast food restaurant, at some point — we have to stop kidding ourselves,” said Kevin Zabel, communications director at ARRM.
He said for direct support professionals, the state and federal government reimburses through Medicare and Medicaid at roughly $14 an hour. Some organizations that oversee group home care can supplement those wages through charitable foundations or additional revenue, and others do not, he added.

Minnesota - State action vs. disability service provider could affect hundreds
By Chris Serres, Star Tribune (via Yahoo News), June 29, 2022

Hundreds of Minnesotans with disabilities and mental illnesses could see their lives thrown into turmoil if a large disability services provider fails to resolve serious health and safety violations that threaten its survival.

Bridges MN, which has 1,400 employees and serves some 500 adults statewide, received formal notice from state regulators this week that its license will be revoked because of repeat violations of state laws governing the care of vulnerable adults. The provider, which intends to appeal the enforcement action, was cited for a wide range of violations — such as failure to report sexual abuse, neglect by caregivers and leaving clients in unsanitary conditions, according to a license revocation order filed Monday by the state Department of Human Services (DHS).

The move by state regulators to revoke a large provider's license is highly unusual, and comes at a time when Minnesota's social safety net for adults with disabilities is severely strained by staff shortages and long waits for services. The closure of Bridges MN could strand people with serious mental illnesses and developmental disabilities who rely on the provider for housing, employment services and in-home care. Many of these clients have nowhere else to turn — particularly as group homes and day service providers curtail services, according to disability advocates and families.

Minnesota - Families push for funding to prevent more closures of group homes
By Danny Spewak, KARE-11 News, June 29, 2022

Alan Fletcher's daughter, Amy, was born with Down syndrome in 1971, leading his family on a "journey of finding good care."Amy, now 51, lives in a Twin Cities group home run by the provider ACR Homes, where she has recently developed early-onset Alzheimer's.

"We became aware of how valuable it was that she's in ACR Homes, because essentially, staff went back to school to learn how to work with Alzheimer's," Alan Fletcher said. "There's a lot of special handling."

However, as staffing shortages continue to plague providers serving adults with disabilities, Fletcher worries constantly about his daughter's future. According to the Association of Residential Resources in Minnesota (ARRM), a provider trade group, the industry has a 30-percent job vacancy rate right now, totaling about 9,000 open positions. Since last year, 173 group homes have closed, ARRM says, including 33 in the past few months alone.

"We are fortunate that [Amy's] particular home in ACR hasn't been threatened for closure yet. But that doesn't mean that will continue," Fletcher said. "There have been a number of other homes in the ACR company that have been closed in the last six months."

Sue Schettle, the CEO of ARRM, said staffing is the "worst it's ever been," with the pandemic exacerbating existing challenges in the workforce. "When that happened, we had people that had to stay home with their children, people that were sick, people that weren't getting reimbursed enough for the hazard they were working in," Schettle said. "COVID really made it that much worse."

For that reason, Schettle is among the many advocates urging Gov. Tim Walz to call a special session, so that the legislature can approve funding to fix the staffing woes and prevent more group home closures. In fact, family members of adults with disabilities rallied at the governor's mansion last week to draw attention to the problem.

California - Opinion: CA is failing developmentally disabled residents
From the Editorial Board of the Press Democrat, July 1, 2022

A blistering report from the state auditor underscores that the Department of Developmental Services fails to adequately serve 380,000 Californians with developmental or intellectual disabilities.

Those Californians are supposed to receive services through nonprofits that operate regional centers. Regional centers assess prospective clients, determine eligibility for services and offer case management, including working with service providers.

DDS is supposed to oversee and fund those centers, but the new audit reports that it is doing neither well. Because of inadequate funding, none of California’s 21 regional centers meets caseload ratios established in state law. Doing so would require hiring 1,100 more service coordinators, according to department data from early this year.

The state auditors examined three centers: the North Bay Regional Center in Napa, Alta California Regional Center in Sacramento and North Los Angeles County Regional Center in Chatsworth. The North Bay facility serves Sonoma, Napa and Solano counties.

Along with overly high caseloads due to insufficient staff, the audit found that DDS failed to monitor service providers with whom centers contracted. For example, North Bay was unaware that it was required to check providers’ licenses as part of its periodic qualification reviews.

The department also did not ensure that the centers promptly resolved clients’ complaints. North Bay even sometimes did not provide required information to clients regarding their right to file complaints. Clients and their families might have sensed they weren’t getting the level of service to which they were entitled, but no one told them what to do about it.

These issues resonate in Sonoma County. In 2018, the state closed the longtime Sonoma Developmental Center, which had its own deficiencies. The well-meaning promise was that clients could be better cared for in the community with the coordination of regional centers.

That promise remains unkept in the face of disgraceful inaction by Gov. Gavin Newsom, the Legislature and the state Department of Developmental Services.

California - Latinx Families Ask for Equal Services for Their Children With Disabilities
By Claudia Boyd-Barrett, The Good Men Project, July 8, 2022

Mayra Jimenez picked up her phone and braced herself.

She was trying—again—to get independent living skills training for her son Bryan, who has an intellectual disability.

If she and her husband had a way to access the training themselves—and could afford it—they would sign Bryan up today. But the training is only offered through a state-funded system of nonprofit organizations called Regional Centers. Through this system, California is supposed to guarantee that children and adults like Bryan who have developmental and intellectual disabilities can get the services they need.

What Jimenez has realized, however, over the four years she has tried to access these services, is that a law and its implementation are two separate things. Bryan, now 20, is still waiting to receive independent living skills training, which he needs to help him learn to take care of himself now that he is an adult.
“A month passes, two months, three months, I don’t have a provider,” Jimenez said. “Four months, a year, longer and longer.”

Research shows that Latinx families like the Jimenezes are less likely than white families to receive services through Regional Centers, which serve as care-coordination centers for people with disabilities. The 21 centers receive state funding to assess needs and connect families to services for children and adults with developmental and intellectual disabilities.

Jimenez, who leads a support group for Latinx parents in Long Beach, where she lives, said she and other families with children served by the nearby Harbor Regional Center struggle to obtain the resources their kids are entitled to. The parents report dealing with bureaucratic hurdles, endless phone calls and arduous waits. Many are single-income households, because one parent needs to care for their child with disabilities, which makes access to free or low-cost services through the Regional Center even more critical.

California’s Regional Centers have long been criticized for disparities in spending and service provision among different racial and ethnic groups. A 2020 study by the pro bono law firm Public Counsel, for example, found that for every $1 Regional Centers spent on a white person in fiscal year 2019-20, Latinx individuals received just 62 cents. According to the lawsuit, Harbor Regional Center authorizes only 37 cents for Latinx individuals with developmental disabilities for every $1 authorized for a white person.

This unequal spending has persisted, despite an $11 million annual allocation from the state aimed at reducing disparities in the Regional Center system.

Georgia - State still falls short when caring for people with disabilities
By Alan Judd and Katherine Landergan, The Atlanta Journal-Constitution, July 1, 2022
Despite 12 years of supervision by a federal court, Georgia’s system for caring for people with mental illness and intellectual disabilities remains a dangerous place, according to a new report.

State officials have failed to meet numerous requirements under a 2010 agreement resulting from an investigation by the Department of Justice, according to a report issued in mid-June by court-appointed reviewer Elizabeth Jones.

Among the issues Jones cited were a failure to protect former patients at state psychiatric hospitals who have been transferred to group homes and other community-based facilities, inadequate efforts to recruit community service providers, and the lack of sufficient beds for people in crisis.

A lack of staff and other issues have rendered one-fourth of the state’s crisis beds unavailable. As of last month, patients had occupied all but five beds — which are supposed to be reserved for short-term stays — for longer than 30 days. One patient had been in a temporary crisis unit since January 2018.

“The reasons for these lengthy placements in crisis homes and hospitals have not changed over the years,” Jones wrote. “There have been and continue to be serious gaps in the community system.”
Because of the bed shortage, the report said, one woman referred to a crisis unit had to remain in jail, where she developed sepsis. She died in a hospital.

Jones’ assessment of the state’s compliance with the settlement agreement is key to determining whether the court’s supervision continues. The agreement has required the state to vastly increase its spending on care for people with mental illness and intellectual disabilities. The federal investigation was a response to articles in The Atlanta Journal-Constitution in 2007 that found more than 100 patients had died in state psychiatric hospitals because of neglect, abuse and substandard medical care during the previous five years.

Jones wrote that staffing shortages have “seriously impeded” the implementation of the settlement, as wages for staff have failed to keep pace with other fields like the fast-food industry or retailers. The lack of staff has forced at least 11 group homes to close, prompting about 30 patients with intellectual disabilities to relocate.

“Unless remedial action is implemented immediately, the situation may worsen,” Jones warned.

North Dakota - Anne Carlsen Center receives $7.6 million for new facility
Christopher Freeman, The Jamestown Sun, June 28, 2022

The Anne Carlsen Center received more than $7.6 million for a new facility that will provide updated medical services for over 50,000 people, Xochitl Torres Small, U.S. Department of Agriculture under secretary for Rural Development, announced Monday, June 27.

This investment is in addition to the more than $33 million announced earlier this year.

This Rural Development investment will be used to provide additional financing for the construction of an approximately 110,000-square-foot facility for Anne Carlsen Center in Jamestown. The new facility will provide modern, flexible and technology-enhanced spaces to allow the Anne Carlsen Center to provide its unique care model for its residents and students.

The new facility will support 34 individuals, including 24 with medically complex needs and 10 with intellectual, developmental and behavioral challenges.

The new facility will provide vastly improved staff and support spaces that will improve the training, workflow and ability for focused and uninterrupted work for the more than 350 staff members employed at the facility.

The new facility will incorporate six major departments that each serve a different and unique need. The six departments include residential, education, therapy, aquatic therapy, administration and support.
“The Anne Carlsen Center has been a trusted, reliable provider of education, services and care for thousands of children and families in North Dakota,” said Erin Oban, North Dakota’s USDA state director of Rural Development. “High-quality care requires appropriate facilities and equipment, and USDA Rural Development is honored to help organizations like Anne Carlsen meet its vision to ensure their clients receive that care in a comfortable, safe, accommodating, state-of-the-art environment.”

New Jersey - After man was found dead in closet, a push in NJ for cameras in group homes
By Michael Symons, NJ101.5, June 21, 2022
(following up on a continuing story)
A plan to allow video cameras to be installed around group homes has stalled in the Legislature, though its advocates continue pushing for its revival.

The bill, S1897/A2483, cites the 2017 death of 33-year-old Billy Cray, who was found face down on a bloody pillow in the closet of his bedroom at the at Devereux Advanced Behavioral Health of New Jersey in Somers Point.

An autopsy concluded Cray died of natural causes, but his mother, Martha, said a detective agreed it was suspicious and that her son had been abused regularly in his 25 years living in five group homes around the state. It has been nearly five years since his death, which she says would be less mysterious – or perhaps have been prevented through deterrence – if there was a camera in his room.

“I’m not going to let my son die in vain and anybody else’s child,” said Cray, a former Roselle Park resident now living in Toms River. “Because this bill is not about my son’s death. It’s in his memory, but it’s to save the lives of others.”

The bill would require video cameras to be installed in common areas of group homes for people with intellectual and developmental disabilities who are 21 and older, if all the residents agree to them. Common areas include entrances, stairwells, dining areas and outdoor areas.
“This is a choice. Choice of cameras. If you don’t want the camera in your room and you don’t want the camera faced at you in the common areas, you don’t have to,” Cray said. “There’s no sound. And it’s a choice. It’s not mandatory.”

Residents could also request a video camera in their bedrooms, which would be paid for by the family.

“It protects everybody from the person with disabilities, special needs to caregivers, agencies,” said Aileen Rivera of Wayne, an activist since her son was beaten in 2010 at the state’s North Jersey Developmental Center. “It protects everyone because cameras don’t lie.”

“If the staff are doing their job, they shouldn’t be afraid to have cameras on them,” Cray said.

The legislation is now more than two years old and has bipartisan sponsorship.
It got through two Assembly committees last session but then stalled without a vote by the full Assembly. This session, the bill hasn’t budged in either the Senate or Assembly.

The bill has opponents, including the Alliance for the Betterment of Citizens with Disabilities and Disability Rights New Jersey, who say it would infringe on an individual’s privacy and rights.

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

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.
Autism/IDD Research News:
Role Identified for Key Gene in Developmental Disability Syndrome
By Karl Leif Bates, Duke Today, June 28, 2022
A single gene that was previously found to be the driving force in a rare syndrome linked to epilepsy, autism and developmental disability has been identified as a linchpin in the formation of healthy neurons.

Duke researchers say the gene, DDX3X, forms a cellular machine called a helicase, whose job it is to split open the hairpins and cul-de-sacs of RNA so that its code can be read by the protein-making machinery of the cell. This gene is carried on the X chromosome, so females have two copies of the gene and males have only one.

“If you remove both copies of the gene in a female mouse, that results in a massive microcephaly
where the brains are severely reduced in size,” said Debra Silver, PhD, an associate professor of molecular genetics and microbiology in the Duke School of Medicine who led the research team. “But the removal of a single copy is probably more closely mimicking what's happening in human patients,” Silver said.

When ASD occurs with intellectual disability, a convergent mechanism for two top-ranking risk genes may be the cause
Science Daily, July 1, 2022

Scientists have discovered a convergent mechanism that may be responsible for how two top-ranked genetic risk factors for autism spectrum disorder/intellectual disability (ASD/ID) lead to these neurodevelopmental disorders.

University at Buffalo scientists have discovered a convergent mechanism that may be responsible for how two top-ranked genetic risk factors for autism spectrum disorder/intellectual disability (ASD/ID) lead to these neurodevelopmental disorders.

While ASD is distinct from ID, a significant proportion -- approximately 31% -- of people with ASD also exhibit ID. Neither condition is well-understood at the molecular level.

"Given the vast number of genes known to be involved in ASD/ID and the many potential mechanisms contributing to the disorders, it is exciting to find a shared process between two different genes at the molecular level that could be underlying the behavioral changes," said Megan Conrow-Graham, PhD, first author and an MD/PhD candidate in the Jacobs School of Medicine and Biomedical Sciences at UB.
Published today in the journal Brain, the paper focuses on ADNP and POGZ, the two top-ranked risk factor genes for ASD/ID. The research demonstrates that mutations in these genes result in abnormal activation and overexpression of immune response genes and genes for a type of immune cell in the brain called microglia.

"Our finding opens the possibility of targeting microglia and immune genes for treating ASD/ID, but much remains to be studied, given the heterogeneity and complexity of these brain disorders," said Zhen Yan, PhD, senior author and SUNY Distinguished Professor in the Department of Physiology and Biophysics in the Jacobs School.

Canadian girl with autism in world-first test on how brain stimulation could stop severe self-harm
By Avis Favaro, CTV National News, June 19, 2022

A nine-year-old Canadian girl with autism spectrum disorder has "amazed" her doctors and scientists after they were able to send electrical signals to her brain that stopped her from inflicting severe harm on herself.

Ellie Tomljanovic who lives in Barrie, Ont., is patient number one in a world-first study to see if deep brain stimulation (DBS) can stop children who repeatedly try to hurt themselves. Doctors estimate that up to 50% of children with ASD self-harm, including by hitting themselves, biting and punching others.
Ellie’s violent outbursts were devastatingly severe. Family videos shared with CTV News show her hitting her head with her hand, trying to swallow her fist, shoving fingers up her nose to trigger bleeding along with vomiting and spitting. Her parents, Lisa and Jason, feared for her life.

"It got pretty bad. So Ellie ended up fracturing both of her cheekbones. She's also knocked out a tooth by biting the side of the bathtub and knocked out one of her front teeth," her mother said.

They say they were spending an exhausting eight to 10 hours a day trying to protect Ellie from herself.
"Our days were pretty much holding Ellie down. So we had to hold down her, her legs and her arms, just so that she wouldn't hurt herself," said Lisa.

In rare cases, children who self-injure can cause brain injuries, blindness, and even death. Doctors think it's how some children show frustration, especially those like Ellie who aren't verbal. Ellie is diagnosed with Pitt-Hopkins syndrome, a rare genetic neurological disorder that's part of the autism spectrum.
When sedatives and anti-psychotics stopped working, Lisa and Jason found themselves at a moment of crisis.

That's when they took her to The Hospital for Sick Children, where Ellie was admitted. It was an appointment with fate.

There, scientists had been preparing a ground-breaking study, hoping to test electrical stimulation for children with autism and this severe and dangerous behaviour. Ellie was a perfect candidate, says pediatric neurosurgeon Dr. George Ibrahim.

DBS has been used for some two decades for depression and Parkinson's disease in adults and epilepsy in children. It uses a small electrical current to override the circuits or regions in the brain that doctors think aren't working properly.

In December 2020 in the midst of the pandemic, a team of doctors led by Ibrahim drilled two small holes at the top of Ellie's skull and implanted two electrodes that went into the depth of her brain. They were then connected to wires under the skin of her neck to a round silver battery implanted on the upper right side of her chest.

That powers an electrical signal that flows through the wires into Ellie's brain.

"We can turn it up and if there's an unforeseen side effect, we can dial it down. So we control the amount of electricity for every child that's implanted with this technology," said Ibrahim.

After a short recovery from the procedure, doctors turned on Ellie's stimulator.

The results were immediate; the self-harming behaviors were gone. Video shows Ellie smiling, high-fiving her mother and happily watching TV.

"She was engaged ... and laughing and clapping," Lisa said. "We both cried. We both instantly cried. As soon as that device was turned on, she had emotion."

"It really amazed me," said Ibrahim. "I think the initial response that Ellie had was very encouraging."
Ibrahim and the team have also turned the device off to see what happens. The self-harm returned. And that has fueled their resolve to push the study forward.

"I thought this is something that could really offer children with no options some options," he added.
The device is also a window into Ellie's brain.

"We're also reading continuously the neuronal information from her brain," says neurologist Carolina Gorodetsky.

"It's definitely very clear that she's much happier after the device was turned on. And whether it's part of her personality that's coming back, that's a big question that's hard to answer," said Gorodetsky, adding the test isn't trying to change her autism but just stop her from injuring herself.

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.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.
Help Us Help:
Shop at Amazon?

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

  1. Just go to smile.amazon.com instead of the regular Amazon 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. Now, bookmark the Amazon Smile page and paste it into your Bookmarks Toolbar, so that every time you go to Amazon, you go through the SMILE portal.
Families of individuals with severe/profound intellectual and developmental disabilities and autism need a voice in Washington, D.C.

For 39 Years, 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 engaged in over sixty 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.

What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

Contact us at [email protected]
836 South Arlington Heights Road #351
Elk Grove Village, IL 60007

Toll Free: 877-399-4867 Fax: 877-866-8377