Pandemic Upends The Lives Of People With Disabilities — And Of Their Caregivers

Bram Sable-Smith • June 20, 2020
Stock Photo by Josh Appel on Unsplash

MADISON, Wis. — When the COVID-19 pandemic hit, Stacy Ellingen, 34, of Oshkosh, lost two of the three caregivers she depends on to dress, shower, eat and use the bathroom. The caregivers — both University of Wisconsin-Oshkosh students — returned to their parents’ homes when the university canceled in-person classes.

Ellingen, who lives with complications from cerebral palsy, had little choice but to do the same — moving back to her parents’ home in Fond du Lac.

Matt Ford, whose arms and legs are paralyzed, already lived with his 76-year-old father, his primary caregiver, in a specially designed house in Verona. One of Ford’s other caregivers moved into his basement for a while, since it was easier for her to quarantine there rather than come and go and risk infection and transmission of the virus to Ford.

Jason Endres asked his care workers to stay away from the home he shares with his wife Julie in Eau Claire. With masks hard to come by, Endres feared the caregivers could inadvertently spread the virus, possibly ravaging his lungs, which have been weakened by spina bifida.

The novel coronavirus, which has infected nearly 13,000 Wisconsinites, has exposed vulnerabilities in the state’s health care programs, including those designed to serve older residents and those with disabilities.

Before the pandemic, Gov. Tony Evers in 2019 created a state task force to address a chronic shortage of caregivers. A report released in February described a “crisis” in the direct care workforce, with 20,655 vacant positions in Wisconsin’s long-term care facilities and residential settings, and an average workforce vacancy rate of nearly 26 percent.

For residents with disabilities who need caregivers in order to live and work independently, the pandemic is adding hurdles. These visiting aides take on demanding duties and are typically paid about $12 an hour in Wisconsin.

Clients with disabilities and their caregivers must weigh how to keep each other safe during close interactions, especially as protective equipment remains scarce. Some caregivers have stuck around; others have quit. And many clients who lose their caregivers also lose independence.

Every respondent to an April survey of nearly 500 Wisconsinites with disabilities and older adults said the pandemic had disrupted their caregiving service. Wisconsin Watch conducted a dozen interviews with people with disabilities, their family members and caregivers across Wisconsin, revealing how the crisis has transformed each life in unique ways.

Help Is Hard To Find

Stacy Ellingen has navigated life from a power wheelchair since she was a child. Cerebral palsy has also affected her fine motor skills: She uses an enlarged keyboard and eye-gaze system to operate her design firm, Design Wheels, from her apartment in Oshkosh, where she lived independently before the pandemic. That computer setup is a key component of the independent life Ellingen has fought for. Now that she’s living with her parents, she doesn’t have access to that tool — or lifestyle.

“I’m not able to do much work while I’m at my parents’,'” Ellingen said. During an interview over Zoom, she used an app on her phone to speak aloud. Ellingen requested interview questions in advance so she would have adequate time to enter her responses in the app.

Ellingen, who is featured in a video about assistive technology, said she could not survive long without caregivers to help her.

“Many times I’ve skipped meals, gone without using the restroom and slept in my wheelchair because I didn’t have a caregiver,” Ellingen said.

This is not the first time a lack of help has forced her to return to her parents’ home, but Ellingen worries the pandemic will wreak long-lasting damage to an already thin caregiving workforce.

A May survey of 504 providers of disability services conducted by the nonprofit Survival Coalition of Wisconsin Disability Organizations showed costs rising and revenues plunging across the industry. Nearly 20 percent of surveyed businesses were unsure whether they would survive the pandemic.

In an ideal world, Ellingen said, she would have six or seven caregivers to fill work shifts, but that hasn’t happened for years. Ellingen was down to just three care workers at the pandemic’s outset, including the two UW-Oshkosh students who have since left town.

University students typically make up at least half of Ellingen’s support staff; each rarely stays with her longer than a year.

Ellingen said life with her parents involves major and minor annoyances. She must go to bed when they do — much earlier than she would prefer — lest she be left with no one to lift her into bed. She also has to live with her parents’ music, television and food preferences.

Still, Ellingen feels lucky; if not for her parents, she would likely live in a nursing home. The long-term care sector has experienced at least 5 percent of Wisconsin’s coronavirus diagnoses and more than 40 percent of deaths from COVID-19.

“That’s the last place anyone wants to be — especially during the pandemic,” Ellingen said.

Caregiver Makes Sacrifices

Matt Ford, 55, also recruits his caregivers mostly from a nearby college campus — the UW-Madison. He typically finds new hires near the end of the spring semester, but not this year because the pandemic sent students home early.

Paralyzed in a diving accident in 1987, Ford needs help getting in and out of bed, preparing meals, using the bathroom and driving. His father provides most of that assistance, and two or three additional workers take shifts at his home.

Ford posts his needs for paid caregivers on UW-Madison’s student job board, often using creative ways to draw attention.

“I just started putting in there: ‘Grass-fed, free-range quad needs help,'” Ford said with a chuckle. (“Quad” is short for “quadriplegic.”)

Grace Brunette noticed the listing in spring 2016, when she was a UW-Madison senior. She has worked for Ford on and off since then.

Brunette is now finishing her studies in a physician assistant program at the UW School of Medicine and Public Health. When the pandemic struck, she no longer felt comfortable splitting her time between her apartment and Ford’s house. She moved into Ford’s basement to minimize contact with outsiders, including her family. The basement was designed specifically to accommodate a live-in aide — a need that seems inevitable as Ford’s father ages.

After spending the entire first two weeks quarantining in Ford’s house, Brunette now stays over three nights a week. Why stay during the pandemic?

“He only has one other caregiver. That would be really selfish of me to just say, ‘Sayonara, I’m going to go quarantine with my family,’ when he needs the help,” Brunette said.

In May, the Wisconsin Supreme Court sided with Republican legislative leaders to strike down Democratic Gov. Tony Evers’ “Safer at Home” order. The decision made Ford bristle at the thought that Wisconsinites might begin to take the pandemic less seriously. In an amicus brief filed before the ruling, advocacy groups argued that if the order were lifted, there would be increased risks of coronavirus infection to older adults and to people with disabilities.

“It does feel a little personal that no one is recognizing the efforts that we made — as vulnerable people who need caregivers in and out of our homes — and the sacrifices that the caregivers made,” Ford said.

“I don’t want people to go out of business either,” Ford added, referencing the push to reopen the state. “I do care about them. I have some empathy toward that. But I also don’t want to die.”

Brunette is still working for Ford, but the public health crisis makes it unclear how long she will remain. She was set to start clinical rotations as part of her physician assistant training in June, which would have taken her out of town — making her unavailable to work with Ford. But when a planned trip to Belize with her classmates was canceled and her clinical rotations for school were moved online, she stayed on the job.

As of now, her next rotation is scheduled to begin in August. Someone will need to fill Brunette’s shifts during the fall. Ford said that is typically one of the hardest times to recruit student caregivers.

Mask Shortage Adds Hurdles

Like many people with disabilities in Wisconsin, both Ellingen and Ford serve as de facto employers for their caregivers, meaning they are responsible for providing personal protective gear. They each get two boxes of gloves every month, paid for by the state’s Medicaid program. But Ford said he is struggling to get gloves from his supplier because of the surging demand during the pandemic.

Masks are even tougher to find. A relative of Ellingen offered to sew some cloth face coverings for her workers. Ford finds masks at the doctor’s office, where he might sneak out one or two after routine appointments. His other source is a neighbor with a carpet-cleaning business. As businesses reopen across Wisconsin, advocates are calling for the state to prioritize caregivers as protective equipment is distributed.

Gov. Evers announced a $100 million grant program for health care providers, including caregivers, in late May. The lack of masks has not dramatically altered either Ford’s or Ellingen’s caregiving plans. It is a different story for Jason Endres and his wife, Julie in Eau Claire.

“It’s really one of the big reasons why we haven’t had anyone come into the home,” Endres said. Without a ready supply of masks, the couple feels uncomfortable inviting even familiar workers into their home, considering that many of them visit multiple clients or other work sites.

Endres, 45, has reason to be cautious. He has spina bifida-linked scoliosis. Endres had rods inserted into his back as a teenager, but his spine remained somewhat crooked — and that spinal curvature has weakened his lungs.

His wife, Julie, has cerebral palsy. Both use power wheelchairs in their ranch-style home, which was built to accommodate their needs. Their decision to keep caregivers away from the house has added challenges during the pandemic. Take the task of changing bedsheets, for example: While a worker might finish in a matter of minutes, it takes the couple more than an hour to complete that chore.

“She would do it once a week,” Jason Endres said of one of the workers who helps the couple. “We’re lucky if we do it twice a month.”

As the pandemic continues, uncertainty is eating Endres up inside: “Are we going to live in this limbo for the rest of our lives? Is that going to be changing for the better or for the worse?

“I agree that we need to get the economy going,” Endres added. “But safety’s got to be first.”

This story is part of a partnership that includes Wisconsin Watch , Wisconsin Public Radio , NPR and Kaiser Health News. Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.

Disability organizations across the country are waiting to receive federal funding that Congress app

Nation’s Disability Services System Begins To Buckle As Funding Threats Intensify

By Michelle Diament • May 6, 2025
President Donald Trump wants to cut $163 billion in federal spending next year, potentially zeroing out key disability programs, some of which are already pausing services because they’re running out of money. The White House unveiled a budget summary late last week known as a “skinny budget” that calls on Congress to slash funding for non-defense discretionary spending by 22.6% for the fiscal year starting in October. This would affect programs that Congress reauthorizes annually, but does not include mandatory programs like Medicare, Medicaid and Social Security. The summary offers little detail about how many disability programs would be impacted. However, a widely circulated budget document leaked last month from the U.S. Department of Health and Human Services offers clues. That document shows that the Trump administration wants to eliminate funding for protection and advocacy agencies, state councils on developmental disabilities, the lifespan respite program and university centers on developmental disabilities, among other programs, advocates say. The targeted disability programs are housed within the Administration for Community Living, which HHS said in March that it plans to break up. Jill Jacobs, executive director of the National Association of Councils on Developmental Disabilities, said she had hoped that Trump’s skinny budget would allay concerns about the leaked HHS budget, but she indicated that it ended up doing “just the opposite.” “It shows absolutely nothing about any Administration for Community Living (ACL) funding at all. Other operating divisions within HHS are identified, but there is nothing about disability, nothing about aging, nothing at all under the HHS category,” Jacobs said. “This makes things even more confusing — and worrisome.” Already many developmental disability programs are being squeezed because HHS has delayed distributing funding that was authorized by Congress in March. In recent weeks, Disability Rights New Jersey, Disability Rights Mississippi and Disability Rights Arkansas have announced that they would halt certain services — either temporarily or indefinitely — because they are running out of money. The groups are all federally mandated protection and advocacy organizations, or P&As, which exist in each state to provide free legal and advocacy services to individuals with disabilities. The organizations help students with disabilities access school services, investigate abuse and neglect in both private and state-run facilities for those with developmental disabilities and much more. “Our agency has been serving individuals with disabilities since the early 1980s, and this is the first time that we have had to cease taking new cases agency-wide. Congress has already approved (and) allotted these monies for our agency — we just are waiting to receive it,” said Polly Tribble, executive director of Disability Rights Mississippi. “Our federal mandate is to protect and advocate for vulnerable people in Mississippi and to root out abuse, neglect, and exploitation, but without our promised funding, if someone calls tomorrow and needs assistance, we can only refer them to another agency.” Tribble noted that the other agencies they refer to are also dealing with cuts and delays in federal funding. “If this crisis is not resolved immediately, we are facing devastating layoffs that will severely compromise our ability to protect and serve the disability community,” Tribble said. These organizations are not likely to be the last ones curtailing services, said Eric Buehlmann, deputy executive director for public policy at the National Disability Rights Network, an umbrella organization for P&As across the country. “Ultimately all P&As will be effected because they will run out funding to pay for staff and services,” he said. Representatives from HHS did not initially respond to questions about the payment delays, but the agency said on Monday that more than $1.1 billion in funding that Congress approved in March will be released by the Administration for Community Living in the next two weeks. The president’s skinny budget spells out cuts at the Centers for Medicare and Medicaid Services, the Centers for Disease Control and Prevention and the National Institutes of Health, among others. It seeks to consolidate housing assistance for people with disabilities with other programs and cut their funding. Spending on special education services would remain level, per the plan. But, seven programs under the Individuals with Disabilities Education Act would be consolidated to give “states and school districts greater flexibility” and funding for the Department of Education’s Office for Civil Rights would be chopped by 35%. “Level funding IDEA in particular — as proposed by the White House — is actually a cut,” said Denise S. Marshall, CEO of the Council of Parent Attorneys and Advocates, or COPAA, a nonprofit that advocates for the rights of students with disabilities and their families. That’s because funding has been static since 2023 even as the number of students with disabilities has grown, she said. The focus on cuts has advocates alarmed and programs operating in survival mode. “All of the uncertainty around funding has meant that disability programs are having to spend precious time and resources on contingency planning instead of focusing on supporting people with disabilities and their families,” said Alison Barkoff, a professor at George Washington University who led the Administration for Community Living under the Biden administration. “Programs that are critical to people with disabilities and their families are at serious risk now and heading into the next fiscal year,” she said, emphasizing that “the risk has never been more serious.” CITATION: [ORIGINAL ARTICLE] Nation’s Disability Services System Begins To Buckle As Funding Threats Intensify: https://tinyurl.com/8c7yx375
A sample of a Maryland driver’s license with a butterfly that represents the hidden disability logo.

Maryland drivers with ‘hidden disabilities’ could get butterflies on their licenses

By Kate Ryan • May 6, 2025
The moment that 20-year-old Eric Carpenter-Grantham of Silver Spring had prayed for finally came to Annapolis this year, when both chambers of the Maryland General Assembly passed the bill that he and his mother had championed. “ Eric’s ID Law ” will allow Maryland residents with “non-apparent disabilities” to opt in to a program that will place a butterfly emblem on their state ID or driver’s license. That symbol isn’t just a decorative flourish. It will indicate to anyone looking at it that the holder of that license or ID has a disability that isn’t immediately obvious. That could include deafness, autism, developmental disabilities or a mental health issue. Linda Carpenter-Grantham, Eric’s mother, explained the idea for the butterfly license came after the two had a hard conversation after the death of George Floyd at the hands of Minneapolis police in 2020. Eric has autism, and his mom explained to WTOP that as the mother of a young Black man with a disability, Floyd’s death left her worried. After their conversation, she explained that Eric, a teenager at the time, “was in tears, he was crying, and he said ‘Mom, we’ve got to do something.'” Eric told his mother that he had an idea: “I would like to make something to go onto the ID so that the police will know that me and my friends have autism so that they won’t hurt us if we ever get stopped,'” Linda said. Eric, who has plans to become a pastor, said he “was praying to God” to send him the right symbol to use. “We were thinking about different things like a star,” he said. But then the butterfly magnets they had on their refrigerator at home came to mind. “So I said, ‘Let’s do a butterfly. The butterfly represents hope, peace, freedom and change,'” he said, and that became the centerpiece of their campaign. “We just want to thank every single person who supported this bill from Day One!” Eric said. His future plans include going to college to get a degree in political science, and to eventually become a pastor. “We’re just waiting for the date when the governor will sign the bill, and we’re super excited to stand there and watch him sign it and receive the ink pen!” she said, referring to the custom of passing the pens used to sign bills into law to the people who worked to get the legislation passed. Citations: [ORIGINAL ARTICLE] Maryland drivers with ‘hidden disabilities’ could get butterflies on their licenses: https://tinyurl.com/54upd5tw
ADAPT activists drag themselves up the U.S. Capitol steps at the

PBS To Spotlight Story Behind The ADA

By Shaun Heasley • March 19, 2025
A documentary about the decades-long fight for disability rights culminating in the passage of the Americans with Disabilities Act is set to premiere.  The film “Change, Not Charity: The Americans with Disabilities Act” follows the twists and turns of a grassroots movement that pushed Congress to mandate curb cuts, ramps and much more to allow people with disabilities access to American life. Relying on archival footage and interviews with activists, lawmakers and other key players, the one-hour film chronicles how the disability rights movement organized and took to the streets to lobby for the ADA in the face of strong opposition. Things came to a head with the “Capitol Crawl,” when people with disabilities including many wheelchair users dragged themselves up the steps of the U.S. Capitol, leading to the 1990 signing of the ADA. “I think the message of this film is that civil rights for people with disabilities are just as important as the rights that everyone either has or should have in our society,” said the film’s director, Jim LeBrecht, who has a disability and who is known for his work on “Crip Camp,” an Oscar-nominated documentary [01] about the origins of the disability rights movement. “There was a coming together of many people, disabled and non-disabled people. Legislators from both sides of the aisle came together in a bipartisan fashion,” he said, referring to the ADA. “I hope that our film will remind our viewers and those in power, that preserving the civil and human rights of people with disabilities benefits everyone.” Narrated by actor Peter Dinklage, “Change, Not Charity: The Americans with Disabilities Act” will air on PBS March 25 at 9 p.m. ET on “American Experience.” Citations: IMDB Webpage for Crip Camp: https://www.imdb.com/title/tt8923484 Original Article: [ARTICLE] PBS To Spotlight Story Behind The ADA: https://www.disabilityscoop.com
Gov. Wes Moore (D) during a hearing last month.(Photo by Bryan P. Sears/Maryland Matters)

Governor’s supplemental budget helps fund disabilities agency by cutting other programs

By Danielle J. Brown • March 6, 2025
Paid family leave, energy projects, and state employee wages taking a hit as DDA, other programs gain in latest spending plan.
Image from https://www.ridehirta.com/invisibledisabilities

Local News Proposed bill would allow Marylanders to disclose nonapparent disabilities on their IDs

By JT Moodee Lockman • February 10, 2025
BALTIMORE -- A proposed bill in Maryland would allow residents to disclose "nonapparent disabilities" on their driver's licenses or identification cards. Eric's ID Law, or HB707, [01] would require the Motor Vehicle Administration (MVA) to add a certain symbol to licenses, ID cards or moped permits indicating that the applicant has a nonapparent disability. The idea was proposed by a Maryland family during an appearance on ABC's "The View," The Baltimore Banner reported. [02] The Carpenter-Grantham family had the idea after the 2020 murder of George Floyd [03] which sparked protests across the nation. "I realized that I have an African American son with an invisible disability," mother Linda Carpenter-Grantham said during the TV appearance. The bill was introduced in the state Senate during the 2024 legislative session but missed a deadline in the House. The proposed bill would require the MVA to establish public outreach programs to educate the public about the new symbols or notations. The MVA would work with disability advocates to design the symbols. The MVA would be prohibited from sharing information about an applicant's disabilities. The bill would also prevent the MVA from asking an applicant to provide proof of their disability or reject an application because the listed disability does not match other documents associated with the applicant. Under the bill, the Maryland Police Training and Standards Commission and Department of State Police would have to immediately implement training for police interactions with those who have nonapparent disabilities noted on their IDs. The bill will be the subject of a hearing on Feb. 13 at 1 p.m. What is a nonapparent disability? According to the proposed bill, a nonapparent disability is a health condition that is not immediately obvious or visible, this could include developmental or intellectual disabilities. According to a study by the National Institutes of Health (NIH), [04] common nonapparent disabilities are anxiety and depression, Alzheimer's, deafness, post-traumatic stress disorder (PTSD), attention-deficit hyperactivity disorder/attention deficit disorder (ADHD/ADD), and diabetes among others. People with developmental disabilities are about seven times more likely to encounter law enforcement than neurotypical individuals, according to a 2001 study by the Department of Justice. [05] Citations: [WEBSITE] Legislation: Eric's ID Law , or HB707: https://tinyurl.com/4r5s8ntp [ARTICLE] Maryland mom and her autistic son pitch a disability safety bill on ABC’s ‘The View’: https://tinyurl.com/4nzukspm [ARTICLE] George Floyd's death sparks large protests, confrontations with police: https://tinyurl.com/263hk9sk [STUDY] Living with invisible medical disabilities: experiences and challenges of Chilean university students disclosed in medical consultations: https://tinyurl.com/bdexd9js [ABSTRACT] Contact with Individuals with Autism: Effective Resolutions: https://tinyurl.com/56d6yd44 [ORIGINAL ARTICLE] Proposed bill would allow Marylanders to disclose nonapparent disabilities on their IDs: https://tinyurl.com/9k7z6nyh 
Advocates and members of the developmental disability community rallied Monday to demand legislators

‘Catastrophic:’ Eastern Shore advocates share impacts proposed disability cuts may bring

By Konner Metz • February 7, 2025
Advocates and service providers on the Eastern Shore are joining Maryland’s disability community to call for rollbacks on projected cuts to funding for developmental disability services. Scott Evans, executive director of the Benedictine School in Ridgely, said the near $200 million in cuts to Developmental Disabilities Administration funding outlined in Gov. Wes Moore’s proposed budget would be the worst he’s seen in his 25-year career. “Bottom line, these proposed cuts of close to $200 million in state funds would be catastrophic to the community service providers, as well as the people we support and our employees,” Evans said. “It would literally set us back years in funding.” The proposed cuts come as the state faces a near $3 billion deficit. Some advocates from the Eastern Shore note they could reduce the choices available for families and people with disabilities. Jonathon Rondeau, president and CEO of The Arc Central Chesapeake Region, says families and people with developmental disabilities on the Eastern Shore already have a limited number of options. “There are less agencies providing services for people with disabilities on the Shore,” Rondeau said. “So if there is instability in the system, it can potentially reduce choice for people with disabilities.” Evans echoed the same sentiment, and added that the cuts could hurt Benedictine’s ability to stay competitive when hiring employees. In recent years, the nonprofit school and service provider has raised wages in an attempt to attract quality employees. “All that has been an investment we’ve made because of the funding that we have received,” Evans said. “Now to wipe that funding out basically overnight means that we’re stuck in a holding pattern.” THE CUTS In Moore’s budget proposal, his office notes that in addition to the $1.3 billion set for the Developmental Disabilities Administration in fiscal year 2026, the state will “better leverage federal funding and align Maryland’s program more closely with federal guidance and practices across other states.” Evans says it’s not clear how DDA would implement the cuts, though his team at Benedictine team is working to crunch the numbers. Evans said it would cost the school hundreds of thousands of dollars of funding at the very least. Specific cuts that worry advocates include reductions in “dedicated hours” funding for those in community living programs, as well as a $14.5 million blow to self-directed services funding. “Someone who is in their late 60s and retired and chooses to stay home every day rather than going to a day program won’t necessarily have that choice anymore,” Rondeau said regarding the dedicated hours cuts. “There won’t be the funding available for that. It’ll be difficult for providers such as The Arc to support someone who may have significant health issues and need to go to the doctors.” Karenna Jones of Salisbury worries that cuts to self-directed services will impact the ability for her family to take care of her 26-year-old son, Kenneth, who has a traumatic brain injury and lives at home. Jones says as long as she lives, she “would never put (her) kid in a provider home.” But large cuts in funding may leave her with no choice. “We might be forced to do that,” Jones said. “It’s not fair.” RALLY IN ANNAPOLIS With the uncertainty swirling, hundreds packed Lawyers Mall in Annapolis Monday night, protesting for legislators to reject the proposed cuts. Leaders at the Benedictine School and The Arc Central Chesapeake Region attended, as did Jones. “I’m always amazed at how quickly the folks within the disability community can rally around a cause, and a cause that means so much to them,” Evans said. “And also, to some extent, the positive response we’ve gotten from legislators about these cuts.” Jones said the rally — organized with just three days notice by a developmental disability coalition — was inspiring and beautiful. “We were saying, ‘Save our DDA services. Save it. Don’t leave us behind,’” Jones said. Citations : [ORIGINAL ARTICLE] ‘Catastrophic:’ Eastern Shore advocates share impacts proposed disability cuts may bring: https://tinyurl.com/5ahffbu8
Advocates for people with developmental disabilities rallied at the State House Monday night in oppo

Hundreds of developmental disability advocates rally against proposed state budget cuts

By Danielle J. Brown • February 5, 2025
State Sen. Craig J. Zucker (D-Montgomery), who has a son with autism, promises to be community's ally.
Robert F. Kennedy Jr. testifies before the U.S. Senate Committee on Finance concerning his nominatio

Autism Takes Center Stage As RFK Jr. Nomination For HHS Secretary Advances

By Michelle Diament • February 5, 2025
Despite concerns about his history promoting a debunked link between autism and vaccines, a key U.S. Senate panel advanced Robert F. Kennedy Jr.’s nomination to become the nation’s health secretary. The Senate Finance Committee voted 14 to 13 this week along party lines to send Kennedy’s nomination to the full Senate, which will have final say over whether he will take over the Department of Health and Human Services. The vote came after Sen. Bill Cassidy, R-La., said he would back Kennedy despite expressing reservations just days earlier over his anti-vaccine past. Kennedy has spent years blaming the increase in autism prevalence on childhood vaccinations. During confirmation hearings last week, Cassidy, a medical doctor, unsuccessfully pressured [01] Kennedy to concede that there is no link between autism and vaccines. But, Cassidy said he ultimately decided to back Kennedy after receiving “serious commitments” from the Trump administration. Specifically, Cassidy indicated that he’s been assured that the Centers for Disease Control and Prevention will not remove statements on its website highlighting that vaccines do not cause autism. Kennedy also committed to “work within current vaccine approval and safety monitoring systems and not establish parallel systems” and “maintain the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices recommendations without changes,” Cassidy said. While Kennedy’s nomination is not guaranteed, Cassidy had been viewed as a significant question mark and his support will ease the path to full Senate confirmation. President Donald Trump has said [02] that he’s “open to anything” when it comes to investigating the increase in autism prevalence in recent decades and he’s suggested that Kennedy would have leeway to look into the causes of autism including the long-discredited connection between autism and vaccines. “20 years ago, Autism in children was 1 in 10,000. NOW IT’S 1 in 34. WOW! Something’s really wrong. We need BOBBY!!! Thank You! DJT,” Trump posted to social media just before the Senate committee met to vote this week. In fact, the latest CDC estimates suggest 1 in 36 children [03] have autism compared to 1 in 150 in 2000. Kennedy’s nomination is raising concerns for several national autism and disability organizations. A dozen groups including the Autism Society of America, the Autistic Self Advocacy Network, the National Association of Councils on Developmental Disabilities and The Arc of the United States put out a statement ahead of Kennedy’s confirmation hearings saying that vaccines do not cause autism. “Perpetuating myths linking vaccines to autism does a disservice to the autism community by distracting from their pressing healthcare needs,” the groups said. Instead, the organizations indicated that policymakers should focus on actual needs in the autism community such as access to health care, mental health services, education and more. “The Autism Society is still very disturbed that Mr. Kennedy has not clearly stated that vaccines are not linked to autism,” Christopher Banks, president and CEO of the Autism Society of America, said after Kennedy’s nomination advanced. “Any direction to reinvestigate debunked myths, will reverse progress, and deter funding that addresses healthcare inequities and services that the autism community needs now.” Citations: [ARTICLE] HH S Nominee RFK Jr. declines to reject vaccine autism link: https://tinyurl.com/mkfpb32s [ARTICLE] Trump signals his administration will investigate debunked link between vaccines and autism: https://tinyurl.com/334jkspd [ARTICLE] Autism now affects 1 in 36 kids CDC says: https://tinyurl.com/3m5hve86 [ORIGINAL ARTICLE] Autism Takes Center Stage As RFK Jr. Nomination For HHS Secretary Advances: https://tinyurl.com/jmephrju
rom left, Laura Howell, CEO of Maryland Association of Community Services; Ande Kolp, executive dire

Advocates ask to be ‘at the table’ amid talks of budget cuts to disability agency

By Danielle J. Brown • January 27, 2025
Despite some conversations between state officials and the disability community, advocates say they’re not being heard.
A public service announcement from Autism Speaks offers information about the signs of autism. (Ad C

Autism Affects More Than 60 Million Worldwide, Study Finds

By Shaun Heasley • January 15, 2025
New estimates show that 61.8 million people around the globe have autism and that the developmental disability is among the most common health issues facing youth. As of 2021, researchers found that 1 in 127 people worldwide were on the spectrum, according to findings published [01] recently in the journal The Lancet. Autism was twice as likely to affect males versus females and there was high prevalence among young people, with the condition ranking in the top 10 causes of non-fatal health burden for those under age 20, the study found. The findings are based on a review of studies and data that was conducted as part of the Global Burden of Diseases 2021 Study, which is considered the largest scientific effort to measure the prevalence and impact of various conditions. The autism rate identified in the new study “substantially changed estimates” from the last version of the report in 2019, but the researchers attributed the increase to updates in their methodology, in particular excluding studies that were likely to undercount prevalence. Researchers identified variances in prevalence by geography with autism affecting 1 in 163 people in tropical Latin America versus 1 in 65 people in the higher-income Asia Pacific region. “There are many factors contributing to this wide range, including varying exposures to risk factors, cultural variation, behavioral norms, or screening tools and diagnostic tools being used in those locations, and also how people are responding to these surveys, or whether they even choose to respond or participate in the survey in the first place,” said Dr. Damian Santomauro, an affiliate assistant professor at the Institute for Health Metrics and Evaluation at the University of Washington who led the study. “Work is currently ongoing to explore ways to quantify and correct for these differences so we can paint the most accurate picture of the prevalence of autism globally.” The latest estimates from the Centers for Disease Control and Prevention [02] indicate that 1 in 36 American children are on the autism spectrum. That figure is based on data collected on 8-year-olds in 2020. By contrast the rate was 1 in 150 in 2000. Experts attribute the rise in diagnosis to greater awareness of the developmental disorder. Those behind the new study say they hope their findings will prompt better policies and greater supports for individuals with autism around the world. “The prevalence and health burden of autism persisted across the lifespan,” Santomauro said. “These findings highlight the need for early detection and lifelong supportive services for autistic individuals.” Citations: [ARTICLE] The global epidemiology and health burden of the autism spectrum: findings from the Global Burden of Disease Study 2021: https://tinyurl.com/4xwk9ebm [ARTICLE] Autism now affects 1 in 36 kids, CDC says: https://tinyurl.com/3m5hve86  [ORIGINAL ARTICLE] Autism Affects More Than 60 Million Worldwide, Study Finds: https://tinyurl.com/24fz2bs3
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