People with developmental disabilities seeing Medicaid coverage lapse more often

Danielle J. Brown • August 11, 2025

Advocates, providers see staffing issues, poor communication in health department among reasons for more cases falling through the cracks.

Recent challenges with Medicaid waivers for people with developmental disabilities are among the problems that have been building up at state health agencies over the last year. (Photo by Danielle J. Brown/Maryland Matters)

An increasing number of people with developmental disabilities are falling through the cracks of Medicaid, going months without health care coverage because the state can’t keep pace with new applications and wrongful termination appeals.

Concrete numbers are hard to come by, but providers and developmental disability advocates attest to several dozen cases where recipients are left waiting to hear back from Medicaid officials about their coverage after submitting a new application or challenging what they believe are erroneous Medicaid terminations.

“Some participants, because of the backlog of scheduling cases to be heard, are waiting six months, eight months, an entire year to get resolved,” said Randi Ames, managing attorney for Disability Rights Maryland, which has been helping frustrated families and Medicaid recipients through various administrative hurdles.

Between limited staffing within the Maryland Department of Health and inadequate communication between branches of the agency, people with developmental disabilities are falling through the cracks and losing Medicaid coverage for crucial services.

“I know they’re aware of this,” Ames said of state officials. “They’re trying to work toward certain solutions, but we’re at that impasse where it’s just not happening quickly enough and people are being harmed.”

Ames and other advocates suspect that there are probably many more cases across Maryland, and her organization is considering legal action if those administrative delays continue.

The Department of Health did not respond to several requests for an interview, though it said in a written statement that agency is “working in partnership with stakeholders and providers to enhance and improve the process for these complex Medicaid eligibility reviews.”

“People with developmental disabilities and the families and providers that care for them deserve accessible services and supports,” the department statement said. “It is a top priority of the Maryland Department of Health to continually improve the systems and processes for Medicaid waiver programs that provide services and supports to applicants, participants, and community providers.”

At issue are Medicaid waivers that allow people with developmental disabilities to get a wide variety of services, from live-in caregiver support to transportation, respite care, employment services and more.

Those waivers are jointly funded by state and federal governments, with each responsible for roughly 50% of the funding. The state is responsible for administering the program.

Each year, waiver recipients must prove to state health officials they are still financially eligible and still need coverage for their disability, in a process known as “redetermination.”

Over the last few years, the Department of Health and the Developmental Disabilities Administration have been struggling to pull out of several controversies while undergoing leadership changes and attempting to fill vacancies within those departments.

The Department of Health was also stung during the 2025 legislative session, as lawmakers made budget cuts to help close a $3 billion deficit.

Those cuts included $164 million in fiscal 2026 from the Developmental Disabilities Administration, an agency that was experiencing unsustainable growth in enrollment and spending.

Despite the agency’s financial challenges, Ames believes that the backlog of application determinations is not “budget motivated.”

“Unfortunately, I think prior to the pandemic, the system was not great — but it was kind of functioning,” she said. Ames believes that the problems were exacerbated after the height of the COVID-19 pandemic, when the state had to determine whether 1.8 million Maryland Medicaid recipients, many added to the rolls during the pandemic, were still eligible in 2023, in a process known as the “Medicaid unwinding.”

She noted that during this time, the department lost experienced staff and added newer employees who had to learn the complex Medicaid determination process.

“When you don’t have the appropriate staff, if you have staff that is not knowledgeable or trained, it all starts to build up and cause this backlog,” Ames said.

Meanwhile, the health department’s top Medicaid and health care financing officer Ryan Moran is leaving the position this month for a top health care job in Washington state.

Providers taking on ‘uncompensated care’

The sudden loss of coverage is also taking a toll on providers of developmental disability services, many of whom have clients who have been receiving Medicaid care for years. Many providers have been pulling from reserves to continue that critical care for clients while they wait for coverage issues to be resolved.

The providers, many of them nonprofits, have been dropping hundreds of thousands of dollars into what may end up as “uncompensated care” while they work to get clients reinstated.

“The deficits, the uncompensated care, ranges from, maybe the lowest being $100,000 to the highest being around $7 million,” said Ande Kolp, executive director of The Arc Maryland. She noted that most, if not all, of the nine Arc facilities across the state have struggled with clients falling

off Medicaid.

“It just kind of speaks to the continued chaos,” Kolp said.

David Erving, CEO of Makom, a nonprofit that provides residential options for people with disabilities, said that he’s noticed “a different level of responsiveness” from the state over the last two years when trying to resolve eligibility issues with his clients.

“Resolving these issues has historically always been very, very expeditious and very, very collaborative with our partners at the state, and we’ve seen some changes to that dynamic,” Erving said.

Erving said that some of his clients over the past year and a half were disenrolled from Medicaid due to a variety of “procedural terminations,” meaning that for one reason or another, the application for coverage renewal did not get processed — or people whose “Medicaid redeterminations did not go smoothly,” in Erving’s words.

Erving said his agency has provided more than $1 million in services for a handful of clients who lost Medicaid waivers over the past 16 months.

His most significant case was that of a 65-year-old man with Down syndrome and Alzheimer’s who lost his waiver status in February 2024. Makom continued providing care for the man as the facility worked to reinstate his Medicaid eligibility, until he died last month.

Erving said that, because of the man’s age, disability and significant health needs, Makom provided more than $650,000 in unreimbursed services during the man’s gap in coverage. He believes the department owes Makom for the services provided that would have been covered if the man was still on the Medicaid waiver.

The reasons people “fall off” of Medicaid vary.

Some providers reported issues with the health department’s mail notifications for annual renewals, meaning that families of the Medicaid recipient don’t know when to send over the application for redetermination.

Another common problem is when a recipient’s income appears “above the asset limit,” meaning they have a higher balance in their accounts than is allowed, even if it’s just by a couple dollars at the end of the month. They have to spend those extra dollars down to maintain coverage.

For these reasons and more, waiver recipients can be disenrolled from Medicaid, even if their financial situation and their needs have not changed. Those who would otherwise still qualify are supposed to have 120 days to appeal the termination and get reinstated.

It’s not unusual for there to be a lapse in coverage while these issues are worked out. Providers continue services and expect to be reimbursed when the client’s Medicaid is restored. But as Erving and other providers note, it’s taking longer to correct those issues.

Daria Cervantes, CEO for The Arc Montgomery County, says that about 50 out of 100 Medicaid waiver recipients in their community living program are in similar situations.

“The number continues to grow as people continue to go through the process and fall out of the waiver for our community living or residential program,” Cervantes said. “The fact that half the people in our community living program are out of the waiver, that’s extremely significant for us.”

Other administrative hurdles occur with new applicants. Ames described a client of hers who received disability services from the state school system, but had to apply for a Medicaid waiver as he aged out of school. His family had submitted an application, she said, but it’s “taking months and months to get that transition over.”

She said another client applied for a Medicaid waiver but never heard whether it was accepted. After Ames reached out to the department, she learned that the agency had not started the approval process at all until she called for an update.

Laura Howell, CEO for the Maryland Association of Community Services, says it’s hard to judge the scale of how many waiver recipients are stuck in this administrative limbo.

That said, Howell believes that officials within the health department seem interested addressing some of the concerns identified in the “complex” Medicaid redetermination process, though it is not clear what the path to fixing it will look like.

“We appreciate that the department is engaging in discussions with us,” Howell said. “But we continue to have a lot of questions about how this will be addressed and how we’ll make sure that people don’t have gaps in services and that community providers are paid as appropriate for these lifeline services that they provide.”

CITATIONS:

[ORIGINAL ARTICLE] https://tinyurl.com/r6etd9eh

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One 17-year-old from Maryland has found a special way to honor her little sister with Down syndrome:

Maryland teen’s book for children honors sister with Down syndrome

By Bridget Sielicki • June 23, 2025

One 17-year-old from Maryland has found a special way to honor her little sister with Down syndrome: by writing a book about her. Key Takeaways: Maryland high schooler Ava Perlin has written a book about her sister, Millie, called “One in a Millieon” as a way to foster inclusivity for those who have Down syndrome. Ava hopes the book will inspire others to see past the differences of those with special needs. The Details: Ava Perlin told WBALTV that her book, “One in a Millieon,” began as a school project to foster inclusivity for others — in particular, her sister Millie, who is three years younger than she. Perlin said she noticed that many kids in school were unsure how to treat Millie because she has Down syndrome. “The biggest thing I noticed with her in school was less of the stereotypical bullying and more distance,” she said. “People feared the unknown and didn’t know how to interact with people who were different.” When her 11th grade English teacher told the students they had to pick a passion project, Ava had the idea to create a book meant to foster inclusivity. “That word — inclusivity — has real meaning and value in our home,” Ava’s mom, Lauren Perlin, told the news outlet. “So, to think that Ava chose to write a story about this — the impact Millie had on her, and what inclusivity means to her — is special and powerful.” Ava’s school project garnered such a positive response that she decided to turn it into a published book, which is now available on outlets like Amazon, where it’s currently the number one new release in the Teaching Students with Developmental & Intellectual Disabilities category. One Amazon reviewer notes that the book is “A heartfelt message about the power of love, family, inclusion, acceptance and celebrating our differences.” The Bottom Line As people with Down syndrome are so often overlooked [...] the message of inclusion and acceptance cannot be overstated. As Ava told WBAL-TV, she hopes the book inspires people to be more open to those who are different. “I want them to be a little less worried about people who are different, and a little bit more comfortable being themselves,” she said. “These people just want to be themselves as well.”

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

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.