August 21, 2026

VOR's Weekly News Update

VOR is a national non-profit organization

run by families of people with I/DD and autism

for families of people with I/DD and autism.

This alert is for our members themselves, not necessarily for their famly members with I/DD...

20 Health Systems Warn of MyChart ‘Medicare Kit’ Scam

By Giles Bruce, Becker's Hospital Review, August 20, 2026

A phishing scam impersonating MyChart is targeting patients at health systems across the country, with fraudulent emails and texts dangling a “MyChart Medicare Kit” or “Senior Health Package” to trick recipients into clicking malicious links or handing over personal information.

The messages, which use subject lines such as “Your MyChart Medicare Kit Awaits!” and references to free senior wellness packages, do not originate from the health systems or from Epic’s MyChart platform. Organizations are urging patients to delete the emails without clicking any links, verify sender addresses, watch for grammatical errors, and be skeptical of unsolicited free offers.

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August is Make-A-Will Month

August is Make-A-Will Month, and VOR would like to remind our families how important it is to plan ahead for your loved ones with intellectual and developmental disabilities and/or autism, and to make sure your will is up to date.

Most VOR members have already made sure their affairs are in order, but if you need guidance, the American College of Trust and Estate Counsel (ACTEC) offers free, expert-vetted resources to help you get it right.

https://www.actec.org/august-is-make-a-will-month

HHS launches autistic missing persons alert initiative 

By Nathaniel Weixel, The Hill, August 21, 2026

The Department of Health and Human Services (HHS) announced on Friday a new federal initiative to improve preparedness and response efforts when individuals with autism are reported missing. 

The agency will partner with the Department of Justice and the Federal Emergency Management Agency to strengthen coordination among emergency management agencies, law enforcement, first responders and community partners nationwide. 

Called the National Autism Missing and Endangered Person Alert Initiative, the program reflects a shared federal commitment to treat high-risk, autism-related missing person cases with appropriate urgency, according to HHS. 

“When an autistic child or adult goes missing, every minute matters,” HHS Secretary Robert F. Kennedy Jr. said in a statement.

HHS said it will also establish a national framework of best practices for autism-related missing person cases, which will aim to address the leading causes of preventable injury and death among individuals with autism, like accidental drowning. 

The initiative will build on existing missing and endangered person alert capabilities that help to get “critical information to authorities and the public quickly and helps bring missing persons home safely,” Kennedy said during a press conference. 

But Kennedy stressed HHS has only just started to design a framework; the system doesn’t exist yet. 

“If an autistic loved one goes missing, people should call 911 immediately. And be ready to share critical information about communication, behavior, about the attraction of water,” Kennedy said.  

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A mother has spent years caring for her special-needs child. The toll quietly grew.

By Ariana Eunjung Cha, The Washington Post, August 16, 2026

Annie Morgan wrapped her arms around her eldest daughter’s waist and guided her toward the minivan, the two of them moving in a slow, sideways shuffle.

At 13, Ava was nearly as big as Annie, who stands just 5 feet flat, 110 pounds.

The morning in May had started well. Ava was cooperative and calm, and Annie, 34, smiled as her two other children bolted past them and into the car. Then something shifted. As Annie helped Ava into the vehicle, Ava wailed and slammed her body against the seat. The car rocked.

“Gentle hands,” Annie said evenly. “We’re okay. We are still going to school.”

The struggle lasted six minutes: long enough for Annie to tighten one belt, then another. Long enough to block a blow to the head, catch Ava’s hands and dodge them when she couldn’t. Long enough for sweat to gather across Annie’s forehead and beneath her shirt.

When she finally settled into the driver’s seat, the clock read 7:49 a.m. Still on time for school (basically).

In one form or another, scenes like this unfold every morning in millions of American homes. Sons and daughters lifting aging parents out of bed. Spouses managing medications. Parents helping adult children get dressed.

Family caregivers — who provide ongoing support for children or adults with chronic, disabling or serious health conditions — now number roughly 63 million Americans, up from 43.5 million a decade earlier. That’s based on a nationally representative survey conducted in 2025 by AARP and the National Alliance for Caregiving, and represents about 1 in 4 adults. Just over 60 percent are women. The Centers for Disease Control and Prevention has documented a similar burden through its own surveillance programs. Together they provide countless hours of unpaid or modestly reimbursed care each year, work that would cost hundreds of billions of dollars if replaced by paid labor.

Health Secretary Robert F. Kennedy Jr. has called caregivers “the foundation of America’s health care system,” warning that without them hospitals and nursing homes would buckle under the demand.

But decades of shifting norms around caregiving have given rise to millions of new caregivers who are suffering elevated rates of depression, anxiety, burnout and suicidal ideation, as well as a range of physical conditions.

Only recently has the toll of caregiving begun to register as a public health problem in its own right. The National Institute on Aging has backed new technologies aimed at easing caregiver burden, including AI tools, and in February a Department of Health and Human Services’s Administration for Community Living document framed the strain as a national infrastructure issue.

That enormous, largely invisible workforce is in part due to an aging population, rising rates of chronic disease and one of the most consequential shifts in U.S. social policy of the past half-century.

The United States has steadily moved away from housing people with disabilities in large institutions and toward a model centered on families and community life. The shift, which accelerated in the 1980s and 1990s, represented a profound change that allowed people who once would have spent much of their lives segregated from society to be part of their communities.

There was the promise of government support: respite care, behavioral services, trained aides, accessible schools and robust community programs that would make family-based care sustainable. But today many of those systems remain fragmented, understaffed or difficult to access. Families became the foundation of the new model, and things haven’t turned out well for many of them.

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A new DOJ opinion raises concerns for families receiving at home disability care

By Chris Remington, Natalie Yuravlivker, Stephanei Armour, and Zach Dyer, KFF Health News via WAMU, August 19, 2026

Amanda DeSimone-Shabrack relies on a home health aide to help care for her son, Mason. He’s 12, has moderate to severe autism and needs around-the-clock support.

Virginia’s Medicaid program helps pay for that aide, about 30 hours a week. DeSimone-Shabrack works three jobs and the program cares for Mason at his Fairfax County home, as opposed to him being in an institution.

In June, the Department of Justice issued a legal opinion declaring that states aren’t required to provide the kind of home and community-based services that let people with disabilities live outside institutions.

The legal shift traces back to a landmark 1999 Supreme Court case, Olmstead v. L.C., which held that unjustified institutionalization of people with disabilities amounts to discrimination under the Americans with Disabilities Act. The new opinion doesn’t overturn Olmstead itself, but it argues the ruling doesn’t obligate states to fund the services.

KFF Health News Senior Correspondent Stephanie Armour told Morning Edition host Natalie Yuravlivker that this is a big reversal. “Every administration for more than a quarter century has supported that ruling. Republican and Democrat.”

DeSimone-Shabrack received a letter earlier this year saying Virginia was cutting the hours for Mason’s home care by nearly half. While she’s appealing, she needs to pay the difference herself, which adds up to about $1,400 a month.

“It does take a toll on you emotionally because I just don’t know what the future will hold.” DeSimone-Shabrack told KFF Health News.

Disability rights advocates worry the opinion will give states legal cover to pull back services. Many states are already cutting Medicaid funding because of federal spending reductions in the One Big Beautiful Bill Act. A KFF analysis of Congressional Budget Office projections found Virginia’s Medicaid enrollment could fall by about 21 percent over the next decade.

A spokesperson for the Department of Health and Human Services, Emily Hilliard, said the agency will continue to enforce civil rights law and that people with disabilities will keep having meaningful access to community services. The Justice Department did not respond to request for comment.

DeSimone-Shabrack said the uncertainty has her thinking about options she never expected to consider, including leaving the country.

“I hate to even think of that, having to do that and taking Mason away from people here that do love and care for him, but we need to do what’s best for him,” she said.

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Pennsylvania - Lawmakers look to reduce disability support turnover

By Anna Ginelli, Altoona Mirror, August 19, 2026

Low reimbursement rates are contributing to high turnover and staffing shortages at agencies employing direct support professionals, forcing families of those with intellectual disabilities and autism to scramble for service or deal with the strain of providing care by themselves.

An estimated 58,000 Pennsylvanians with intellectual disabilities and autism need some assistance every day to reach their highest level of independence and opportunity, according to the state Department of Human Services (DHS). In Pennsylvania, the average direct support professional (DSP) wage is $18.53 per hour, according to a recent study by the Center for Disability Information.

The House Human Services Committee heard testimony Tuesday from officials, DSP agencies and parents of individuals in need of care from DSPs.

"When did working in a warehouse or picking up trash become more valuable than caring for a human life? I ask this question not to undermine those jobs, but because most of those positions pay more than DSPs are paid," said Zena Ezekiel, a DSP at Invision Human Services. "When I think about walking away from this profession, I then think about the person I have supported for 16 years and I cannot do it. I think of his smile and the bond I have formed with him, and that means more to me than I can describe. That relationship, despite all the challenges and hardships, has made it all worthwhile."

Pennsylvania has a 41% annual DSP turnover rate and an 18% DSP vacancy rate, according to the Center for Disability Information study. The high turnover rates leave DSPs frequently looking for new placements and families of individuals with intellectual disabilities and autism constantly readjusting to a different person in their home.

"When families do get lucky and find a provider willing and able to staff their child's case, many times the staff doesn't last long. In the 10-plus years that we have struggled to find and keep staff for in-home services, at times I wondered if I needed a revolving door on my house. That's how frequently we have lost staff," said Rose Baumann, a Washington County resident and mother of 24-year-old Collin, who has profound autism. "We have a system that is not equipped to recruit, compensate, adequately train and continually develop and mentor DSPs who are able and willing to support individuals as complex as my son."

Rep. Jessica Benham, D-Allegheny, introduced bipartisan legislation to create an annual inflation-based increase for Medicaid rates paid to providers serving people with intellectual disabilities and autism, with the goal of also increasing wages for DSPs.

House Bill 1939 would require an annual update to the home and community-based fee schedule rates for DSPs. Beginning Oct. 1, 2026, rates would increase based on the change in the Consumer Price Index (CPI), an inflation indicator, to the extent funding is available. The bill would supplement the state's existing requirement that the DHS conduct a broader review of the rates every three years.

The legislation also ties those reimbursement increases to DSP wages. When DHS increases reimbursement rates to account for inflation, providers would be required to increase DSP wages by the same CPI-based percentage. Providers also could not pay DSPs below a minimum rate established by DHS.

Beginning in 2027, providers that fail to meet the wage requirements could face fines and would be required to annually report staffing, wage and compensation data to the department.

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Massachusetts - Disability advocates worry about ‘unintentional harm' in bill to protect health care workers           

By Meghan Smith, WGBH News, August 20, 2026

Susan Senator’s son Nat Batchelder thrives on routine. Batchelder is 36 and has profound autism, meaning he requires round-the-clock support and struggles to communicate when he is stressed.

Batchelder lives in a group home in Boston. Like many parents of children with autism and other intellectual disabilities, Senator worries his behavior could be misinterpreted when he’s in environments with people who haven’t been specifically trained to support him.

“If there’s a change, or if there’s something in the environment that is confusing or destabilizing to him, he or others with a similar diagnosis could act out — maybe self-injurious behavior, or biting himself,” she said.

That’s why Senator is worried about some parts of a bill currently being negotiated on Beacon Hill. The legislation is designed to address violence against health care workers. 

It would make it easier for police to arrest people who assault health care workers, and require health care facilities to improve safety measures including increased reporting, more data collection, special training and giving employees time off to recover from assaults. According to a survey from Massachusetts Nursing Association, seven out of 10 nurses have been experienced abuse or violence at work in the last two years.

While the bill has attracted widespread support among lawmakers and health care worker groups, some disability advocates are pushing back. While they support the bill overall, they argue that its too-broad definition of health care facilities to include group homes could have unintentional consequences, and it could criminalize behavior that is common among people with intellectual disabilities who have communication barriers.

“There’s all this potential for misunderstanding and tragedy,” Senator said.

Both the House and Senate have passed the bill, and the conference committee is currently debating the final version to reconcile the two. The House version of the bill would allow assaults against health care workers to be elevated from a misdemeanor to a felony. The Senate version allows for a police officer to arrest and detain someone without a warrant if the officer has probable cause that they committed a misdemeanor against a health care worker.

“This really is a nuanced matter,” state Sen. Robyn Kennedy told GBH News. Kennedy, a Worcester Democrat, introduced an amendment that would put a one-year pause on the arrest provision for group homes so that alternatives could be explored.

“We still want to get employees in group homes to have the access to the same supports that the bill overall includes,” Kennedy said. “But I share the concerns that the advocates referenced when it comes specifically to what it would mean for this new warrantless arrest in a group home setting and how that is different.”

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Nebraska DHHS hiring third party to evaluate implementation of Developmental Disability waivers

By Jackie Ourada, Nebraska Public Media, August 18, 2026

The Nebraska Department of Health and Human Services said Tuesday that it’s partnering with a third party to evaluate how the new implementation is going for the interRAI needs assessment for Developmental Disability waivers.

Before Nebraska used the interRAI implementation method, it utilized the ICAP assessment, which was essentially discontinued. DHHS said it’s “significantly expanded access” to Home and Community-Based Services since switching to the interRAI assessment in July 2025.

The third party looking into the assessment is Alvarez & Marsal Public Sector (A&M), and DHHS said its contract with the company will cost $420,000. The agency said the contract was exempt from the competitive bidding process, but the agency won’t use its Division of Disability and Aging service budget to cover the contract’s expenses.

“This evaluation is not coming at a cost to services,” Tony Green, the director of DHHS’ Division of Disability and Aging said. “As we continuously have an increase in the number of Nebraskans receiving waiver services, an independent and in-depth evaluation will allow Nebraska to optimize service delivery and allocation of resources to ensure the needs of all are being met while the program remains sustainable.”

Alvarez & Marsal is a company frequently used by state and federal agencies to “solve complex problems” for its partners. The third party will analyze the DD waiver process over the next four months, and then the company will deliver its findings to DHHS, according to a Tuesday news release.

“The evaluation process will include several activities, including stakeholder engagement with families, providers, clients, and DHHS employees, to assess the effectiveness, usability, performance, and overall value,” the release said.

“Before launching the interRAI in July 2025, the state intended to conduct an independent evaluation of the interRAI implementation for DD Waivers based on feedback. The interRAI was selected with input from stakeholders and is a nationally accredited tool to determine services based on a cost-to-serve model. Since the launch, DHHS has continuously monitored the output of interRAI assessments to ensure participants are receiving an appropriate determination,” Green said.

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Vaccine research spans decades and doesn’t show they cause autism

By Madison Czopek, Politifact via KMBC Kansas City, August 16, 2026

President Donald Trump has called for big changes for how U.S. children are vaccinated. As he signed an executive order recommending a new schedule for vaccines, the president said the new plan would have a “huge impact on autism.”

Credible studies have not linked vaccines to autism. Research, in fact, shows the opposite.

Autism — also known by its medical name autism spectrum disorder or ASD — refers to a neurodevelopmental condition related to brain development that influences how a person behaves and communicates.

Time and again, researchers have found no association between childhood vaccines and autism.

“Dozens of studies involving millions of people show there is no link between vaccines and autism, and yet federal leaders continue to promote this outdated, disproven idea to scare families,” American Academy of Pediatrics president Dr. Andrew D. Racine said.

Joshua Anbar, an Arizona State University healthcare administration and policy professor and someone who has researched autism’s prevalence, said extensive study leaves him highly confident that the condition is unrelated to vaccines.

His conclusion comes from many findings across very large populations, different study designs, different countries and health systems and more.

The idea that vaccines cause autism dates back to a 1998 paper in The Lancet that claimed to have found a connection. It was discredited by fellow researchers as an “elaborate fraud.” The paper’s lead author was stripped of his medical license for deliberately falsifying the research, and The Lancet published a retraction.

You may not have time to comb through dozens of studies, so we did it for you. Here’s a closer look at the conclusions from four studies that show why scientists today say they are confident that vaccines do not cause autism.

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Vaccines are important for people with intellectual and developmental disabilities, expert says   

By Elias Guerra, WAMC Northeast Public Radio, August 20, 2026

Last week -- during National Immunization Awareness Month -- President Donald Trump signed an executive order calling for revamped recommendations for childhood vaccinations, like those for measles, mumps and rubella. The order advocates for separating the shots into single-disease shots to be administered at different appointments. During the announcement, President Trump linked the number and timing of vaccines to rising rates of autism, despite scientific evidence of any link.

Meanwhile, experts say access to vaccines is especially important for people with intellectual and developmental disabilities (IDD). To learn more, WAMC's Lower Hudson Valley Bureau Chief Elias Guerra spoke with Brittany Miske, Vice President of Health Care Management and Quality Officer for Care Design New York, the state's care coordination health home that serves individuals with IDD.

INTERVIEW TRANSCRIPT

Guerra: Why is it especially important for people with intellectual or developmental disabilities to get vaccinated and what are some of the challenges there?

Miske: So vaccines are important for folks with IDD because it allows your body to develop a defense against viruses and diseases it wouldn't normally have otherwise, right? So you go out in the community to a concert, have a family gathering, etc. Someone might be ill with the flu. If you hadn't received your flu vaccine, that would be the first time your body would be seeing the flu and it would have a more dramatic response and potentially severe without the vaccine, could have complications or result in the hospital.

Individuals with IDD more specifically often have changes to their upper respiratory, their airway, and how they breathe, which can put them at risk for breathing difficulties when they do get sick. They also tend to have multiple chronic conditions.

During COVID, and I hope that stays in our past, right? But you may have heard the term immunocompromised. That came to the forefront of discussions. And what that means is people that have multiple chronic conditions, that makes their immune system less effective. They can't fight viruses and illnesses as well. And folks with IDD often are immunocompromised, meaning they get sicker, quicker, and worse. So as far as barriers with folks with IDD, it's multifactorial.

No one wants to go to their doctor, right? We don't want to go to our doctor and get a shot, get our blood work. It's uncomfortable.

Folks with IDD, they often struggle with barriers with transportation. A lot of folks are dependent on Medicaid transportation, which is a very difficult system to navigate, schedule specific times, and or others to bring them to those appointments. Additionally, going to a doctor's office can create a lot of sensory overload, right? Bright lights, noises, new environment. And that can result in behaviors such as stimming or folks just not wanting to be in that setting, resulting in not getting the preventive care that you went to the office for.

So, ensuring that the healthcare provider knows that someone might be coming in and needs some extra support to get through that appointment can be really helpful to overcome those barriers.

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Please share this offer with your loved one's

Direct Support Professionals!

VOR ❤️s OUR

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 receive our newsletter.

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

info@vor.net

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.

[Please click on blue link to view information about the bill]

VOR SUPPORTS:



S.4889 - Sen. Tim Kaine (D-VA) - The Supporting Our Direct Care Workforce and Family Caregivers Act - A bill to award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers. 



H.R.6137 / S.3211 - Rep. Brian Fitzpatrick (R-NJ) and Sen. Maggie Hassan (D-NH) - Recognizing the Role of Direct Support Professionals - A bill to require the Office of Management and Budget to consider revising the Standard Occupational Classification system to establish a separate code for direct support professionals

H.R4849 / S.2556 - Rep. Adam Grey (D-CA) and Sen. Chuck Schumer (D-NY) Protecting Health Care and Lowering Costs Act of 2025 - To repeal health-related portions of An Act to provide for reconciliation pursuant to title II of H. Con. Res. 14 (Public Law 119-21, The One Big Beautiful Bill Act)

H.R.8736 - Rep. Glenn Grothman (R-WI) - Restoration of Employment Choice for Adults with Disabilities Act - To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities. 

H.R.6766 / S.3492 - Rep. Claudia Tenney (R-NY) and Sen. Richard Blumenthal (D-CT) - Essential Caregivers Act - 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 period in which regular visitation is restricted.

H.R.4796 - Rep. Laura Friedman (D-CA) - Restoring Essential Healthcare Act -To amend Public Law 119-21 (The One Big Beautiful Bill Act) to repeal the prohibition on making payments under the Medicaid program to certain entities.

H.R.4807 - Rep Greg Landsman (D-OH) - Protect Our Hospitals Act - To amend Public Law 119-21 to repeal certain changes to provider taxes under the Medicaid program. 

H.R.1262 & S.932 - Rep. Michael McCaul (R-TX) and Sen. Markwayne Mullin (R-OK) "Give Kids A Chance Act" - To amend the Federal Food, Drug, and Cosmetic Act with respect to molecularly targeted pediatric cancer investigations. This bill would renew research into pediatric cancers and includes increasing funding for rare diseases, some of which cause Intellual and developmental disabilities and autism.  

H.R.1509 & S.752 - Rep. Lori Trahan (D-MA) & Sen. Chuck Grassley (R-IA)

Accelerating Kids' Access to Care Act -

This bill would amend titles XIX and XXI of the Social Security Act to streamline the enrollment process for eligible out-of-state providers under Medicaid and CHIP, and streamline enrollment under the Medicaid program of certain providers across State lines.

H.R.2598 & S.1277 - Rep Jared Huffman (D-CA) and Sen Chris Van Hollen (D-MD) The IDEA Full Funding Act

To amend part B of the Individuals with Disabilities Education Act to provide full Federal funding of such part.

S.2279 - Sen. Josh Hawley (R-MO)

A bill to repeal the changes to Medicaid State provider tax authority and State directed payments made by the One Big Beautiful Bill Act and provide increased funding for the rural health transformation program.

H.R.1950 - Rep. Mark Pocan (D-WI) - Protect Social Security and Medicare Act

To protect benefits provided under Social Security, Medicare, and any other program of benefits administered by the Social Security Administration or the Centers for Medicare and Medicaid Services. 

S.779 & H.R.1735 - Sen. Alex Padilla (D-CA) & Rep. August Pfluger (R-TX)

To amend title XIX of the Public Health Service Act to provide for prevention and early intervention services under the Block Grants for Community Mental Health Services program

H.R.2491 & S.1227 - Rep Kat Cammack (R-FL) & Sen. Edward Markey (D-MA) - The ABC Act

To require the Administrator of the Centers for Medicare & Medicaid Services and the Commissioner of Social Security to review and simplify the processes, procedures, forms, and communications for family caregivers to assist individuals in establishing eligibility for, enrolling in, and maintaining and utilizing coverage and benefits under the Medicare, Medicaid, CHIP, and Social Security programs



VOR OPPOSES:

H.R.2743 & S.1332 - Rep. Bobby Scott (D-VA) & Sen. Bernie Sanders (I-VT) Raise the Wage Act - A bill to provide increases to the Federal minimum wage and for other purposes. VOR opposes the provision in this bill that would phase out section 14(c) and sheltered workshops for individuals with I/DD and autism.

S.2438 - Transformation to Competitive Employment Act (Sen. Chris Van Hollen (D-MD) - A bill 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 people with disabilities through competitive integrated employment, to phase out the use of such special certificates, and for other purposes. 

H.R.9401 / S.4865 - Rep. Steve Cohen (D-TN) & Sen. Michael Bennet (D-CO) The Latonya Reeves Freedom Act of 2026 - A bill to prohibit discrimination against individuals with disabilities who need long-term services and support. The bill is "softer" than in previous years, yet still biased against institutions (without specifying ICFs) and fails to acknowledge the importance of ICFs and SNFs in a full continuum of care. 

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