January 23, 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.

Save The Date!

VOR's 2026 Legislative Initiative

June 8 - 10

Washington D.C.

We are proud to announce that we will be returning to Capitol Hill this June.

Hotel accommodations are being arranged, and we expect to have

information about reservations next week.

This will be a critical year for our families.

Last year, Congress passed legislation that cut Medicaid by nearly

One Trillion Dollars.

They ignored our pleas for better wages and benefits for DSPs.

Their actions have cut the DSP workforce dramatically.

They have cut Special Education programs for people with I/DD and autism.

They have acted like we do not exist.

This year, we have to show up, stand up, and speak up.

We need to be seen.

We need to be heard.

We need to give a voice to those who cannot speak for themselves.

Stay tuned for more details in the weeks ahead.

House Republican Study Committee Pushes for Second Budget Reconciliation Bill and More Damaging Medicaid Cuts

By Edwin Park, Georgetown University, McCourt School of Public Policy, January 22, 2026

On January 13, the House Republican Study Committee (RSC) unveiled its plan for a second budget reconciliation bill for this Congress, in addition to H.R. 1 (the “One Big Beautiful Bill Act” or P.L. 119-21) which was enacted on July 4, 2025. The plan includes a number of proposals to cut Medicaid, on top of H.R. 1’s draconian Medicaid cuts which already cut federal Medicaid spending by nearly $1 trillion over ten years and increase the number of uninsured by 7.5 million by 2034. 

In general, while these RSC proposals to further cut Medicaid are described only in brief bullet points and lack any policy detail, they appear to be similar to (1) proposals that were included in the original House-passed version of H.R. 1 in May 2025 but were dropped from the final legislation and (2) proposals that were floated by the House Budget Committee as budget reconciliation policy options in January 2025 but were not included in either the original House-passed bill or the final legislation (or would go beyond the provisions of the final legislation). These highly damaging proposals would further increase the number of uninsured people, reduce access to needed care, shift costs to states, and cause further financial stress for hospitals and other providers.

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Congress Poised To Reject Trump Changes To Special Ed, Disability Programs

By Michelle Diament , Disability Scoop, January 23, 2026

A budget agreement working its way through Congress rebuffs Trump administration efforts to make major changes to the Individuals with Disabilities Education Act and eliminate some disability programs.

Lawmakers in the U.S. Senate and House of Representatives are working furiously to approve funding for most federal agencies before it expires Jan. 30. The House approved a bipartisan agreement this week that would fund the agencies through September and the Senate is expected to take up the measure next week.

The deal dismisses many sweeping changes that President Donald Trump had sought for programs serving people with developmental disabilities and includes new limits on what the administration can do going forward.

Special education funding would increase by $20 million under the bill, which also spurns a Trump plan to alter IDEA in order to consolidate funding and give states more control over where dollars go.

“Importantly, the deal rejects the block granting of IDEA funds proposed by the administration that would have eliminated parent training and information centers, technical assistance centers, personnel preparation and other important programs,” said Stephanie Smith Lee, co-director of policy and advocacy at the National Down Syndrome Congress, who served as director of the Department of Education’s Office of Special Education Programs under President George W. Bush.

There are also provisions in the spending package designed to hamper Trump’s efforts to move oversight of special education out of the Education Department.

“The bill prohibits the U.S. Department of Education from transferring any education funding to another federal agency unless an appropriations law allows it to do so. The bill clearly states that no authorities exist for ED to transfer its fundamental responsibilities and prohibits any funds to be used for any department reorganization that decentralizes, reduces staffing levels, or alters the responsibilities of the department,” Lee said. “We appreciate this clear direction from Congress.”

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Survey: Iowa’s direct care workers saw pay rise $2.62 over 15 years

By Matt Kelley, Radio Iowa, January 20, 2026

A study finds one of Iowa’s largest and most in-demand workforces has seen a meager increase in its average pay over the past decade and a half.

Di Findley, executive director of Iowa CareGivers, says direct care workers perform duties that are essential and critical in nature, but their take-home pay continues to be paltry.

“Wages have gone up some for direct care workers,” Findley says, “but when you factor in inflation, cost of living and so forth, their real wage growth has only been $2.62 over a 15-year period of time.”

The consequences are being felt statewide, Findley says, as employers struggle to fill vacancies, people with disabilities can’t find or keep caregivers, and family caregivers are forced to leave the workforce because backup care is unavailable.

“It’s so important because there are shortages,” Findley says. “The wage is the number-one reason they leave the field and better wages is the number-one reason why they would return to the field.”

“Direct care workers are certified nurse aides, home care aides, rehab aids, direct support professionals — they have about 30 different titles,” she says, “and they work in settings that range from the homes, to nursing homes, assisted living, hospitals, group homes.”

In addition to low wages, Findley says the future is uncertain for the vital direct care workforce due to other factors like limited access to affordable health insurance and benefits, as well as burnout from chronic understaffing.

“The bottom line is,” Findley says, “if the direct care workforce is not there, then people go without services and the care and support that they need.”

Read the full article here

Delaware - ‘Afraid to die’: Parents of disabled adults struggle to find housing  

Why Should Delaware Care?

In Delaware, adults with intellectual and developmental disabilities have multiple residential options, such as group homes or supported living. But families whose adult children still live with them are concerned about finding placement in homes that will provide adequate care for their children before they die.  

A good day for Ramara Shackelford is one when her 21-year-old son makes it through his daily routine without prompting. 

On those days, her adult son Marcellus “Dre” Shackelford will wake up and get dressed by his second alarm. Then, he will make his breakfast, take his medication, brush his teeth, and wash his face before going to his day program. Many of those steps will be done independently, with minimal prompting from his mother. 

Shackelford says that happens about twice a month. 

Most days, every step of Dre’s routine is rushed. He lies in bed past his alarms. Then, with help from his mom, he races out to catch his morning bus to a program hosted by the Red Clay Consolidated School District that serves students with intellectual and developmental disabilities in kindergarten through age 22.

On those days, Dre still makes it to his classes at the Meadowood Program, where he works on his social skills, such as conversation starters, and learns to do tasks, such as washing dishes. Shackelford’s goal is for her son to ultimately have more independence as an adult.

“I want him to be able to go to a retail shop and buy his deodorant,” she said, “just things that regular people do.”

Soon, Dre will be too old for the Meadowood Program, so Shackelford has begun to look for housing where her son can live independently. In doing so, she has encountered a system of adult living situations that can be overwhelming in their complexity. She can’t imagine what it would be like for some who have to do it on his own. 

“You could be one of the most educated people in the world, but if you don’t have a fiduciary who is truly trying to assist you and that truly understands his or her role as a navigator, you’re going to be lost,” she said. 

Many parents start navigating residential options once their children begin to age out of school-based programs, where they have spent years learning about the best individual ways to educate their kids. Then they have to do it over again for housing, with a whole new set of vocabulary.

“And they tell you, ‘Well, you pick what’s best for you.’ How do you know what’s best for you?” Shackelford said. 

Stacey O’Rourke is a mother of three daughters – two 18-year-olds and a 20-year-old. All three of her children have autism and are intellectually disabled. 

She said the housing system is “devastating, heartbreaking, and the process is not simple.” 

Like Shackleford, O’Rourke is currently navigating that process, but says that unless it is an emergency, adults with disabilities are unlikely to find a place to live. And she is worried about what would happen to her children if she is unable to take care of them and does not have housing secured. 

“I’m afraid to die,” she said. “I can’t die because there’s nobody to take care of my kids.” 

O’Rourke is advocating for her daughters to be placed together in their own home because they already know how to live together. But she fears they won’t be. 

She has heard from other families that adults with disabilities are often placed into group homes individually – even when a family has multiple adult children with intellectual and developmental disabilities. 

“The system, the way it is now, I just have to place [my daughters] one at a time, so they’re going to be in three different places,” O’Rourke said. “That’s not fair.”

Read the full article here

California - ‘I’d Be Left Alone’: Medicaid Cuts Put Disabled Patients’ In-Home Care at Risk

By Hyeyoon Cho, KQED (PBS), January 18, 2026

Emma Denice Milligan can be a prankster. Her warm eyes, big smile and wheelchair can be misleading, said her caregiver, Wanda Kincy. But Emma once crashed a wedding and helped herself to the food. Another time, she put herself on a plane from Oakland to Chicago to meet her high school sweetheart without telling her caregivers.

Kincy points two fingers at her own eyes and then at Milligan’s. “I know you,” she said with a grin.

Kincy arrives at the Oakland home Milligan shares with her aunt and uncle at 8 a.m., five days a week, staying until at least 10 p.m. and overnight on Thursdays and Fridays. She helps Milligan, 57, get dressed, bathed and ready for her adult day program. Kincy books Milligan’s paratransit rides, times medication reminders and keeps track of the small details that make her independence possible.

The care Kincy provides is covered through California’s Medicaid program, also known as Medi-Cal. Federal cuts have many advocates worried about the future of such care.

Under federal law, most home- and community-based services are optional benefits, meaning states can choose whether to include services like personal care in their Medicaid plans and how broadly to offer them.

In California, Medicaid covers in-home supportive services to Californians who are elderly, blind or disabled and would otherwise be at risk of nursing home placement. The federal government reimburses California for about half of the cost of IHSS.

In-home services enable Milligan’s family to hire Kincy to assist with daily personal care and household tasks so Milligan can remain safely in her family home.

“If I lose Wanda, then I would probably have to go to a facility,” she said. “People at the facility don’t care. I would be calling them for help, and they wouldn’t come. I’d be left alone and be wet all night, because I can’t go to the bathroom.”

Milligan has received IHSS on and off while living in both California and Chicago. In 2011, she moved to Oakland and has relied on the program continuously since. But there is a growing concern about how long the services can last.

Related Story: Alameda Health System to Lay Off Hundreds in January After Massive Federal Cuts

In July, Congress approved roughly $1 trillion in Medicaid cuts over the next decade, beginning in 2026. Because the federal government pays roughly 54% of California’s total home- and community-based services costs, the impending cuts immediately raised alarm.

The White House has said the budget package would not affect Medicaid coverage for people with disabilities. Advocates warn the changes will nonetheless fall heavily on home- and community-based services, which aren’t protected like nursing home services. They say optional services are often the first to be reduced.

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New Jersey - Governor Murphy signs bills tightening oversight of disability care providers  

By Jay Edwards, WRNJ Radio, January 19, 2026

Gov. Phil Murphy signed three bipartisan bills into law aimed at strengthening oversight, expanding protections and reinforcing quality standards for providers serving people with intellectual and developmental disabilities across New Jersey.

“Individuals with intellectual and developmental disabilities deserve to feel safe, respected, and supported in every setting, without exception,” Murphy said. “These measures give the State clearer authority and stronger tools to demand accountability and uphold high standards of care. With today’s bill signings, we are reaffirming our commitment to ensuring the intellectual and developmental disability community receives the quality care, dignity, and support they deserve.”

The package includes a measure that expands the state’s enforcement tools over residential and other service providers and creates a fund to reinvest proceeds from fines into monitoring and quality improvements. Another bill revises the legal definition of child abuse or neglect to include certain individuals up to age 21 in regulated settings, shifting investigative responsibility for incidents involving young adults from the Department of Human Services to the Department of Children and Families. A third establishes a Disability Mortality and Abuse Prevention Advisory Committee within Human Services to review selected cases involving abuse, neglect, exploitation or death of adults with intellectual and developmental disabilities. 

“Fundamental to New Jersey Human Services’ mission is our commitment to support and protect people with intellectual and developmental disabilities,” Human Services Commissioner Sarah Adelman said. “These new laws give the Department additional tools to promote high-quality care, strengthen oversight, and ensure that our systems continue to evolve in ways that reflect best practices and the needs of the people we serve. I am grateful to Senator Vitale, Assemblywoman Murphy and the bill’s sponsors for prioritizing this important package of legislation on behalf of the residents that we serve.”

“This legislation strengthens accountability and transparency in group homes by creating a clear, consistent framework for investigations for young adults ages 18-21 in care,” Children and Families Commissioner Christine Norbut Beyer said. “By streamlining the investigative process and standardizing critical reporting criteria, we are ensuring that incidents are addressed promptly and effectively, centering the health, safety and dignity of youth in care.”

State officials said the bills were drafted with cooperation between Human Services leadership and Sen. Joseph Vitale, chair of the Senate Health, Human Services and Senior Citizens Committee.

“These laws strengthen protections for individuals with intellectual and developmental disabilities by reinforcing oversight and accountability,” Vitale said. “From enhancing the State’s enforcement authority over service providers, to better aligning oversight responsibility among state agencies, to empowering a dedicated advisory committee to examine how cases of abuse and neglect are substantiated, this legislation ensures that safety, dignity, and quality of care remain at the center of our system. I am grateful to the Governor for signing these important reforms into law.” 

Read the full article here

Group homes face fines in NJ with new law. How it works

By Ashley Balcerzak and Jean Rimbach, North Jersey. com, January 18, 2026

New Jersey's private companies running group homes for individuals with developmental disabilities will face fines for the first time under a bill Gov. Phil Murphy signed into law on Jan. 18  — a measure passed amid public outcry that the state does not hold providers accountable when the vulnerable under their care are harmed. 

But it’s unclear how often — if at all — fines will be used. Before many of the penalties can be levied, the state would have to take substantial action against a group home provider. 

In its 2025 investigation Hidden at Home, NorthJersey. com revealed that the agency overseeing group homes — the Department of Human Services — frequently fails to use its existing powers to hit providers’ pocketbooks, such as halting new admissions or development of new homes for companies with patterns of abuse and neglect.

What’s more, just 2% of all reported incidents are investigated by the state, NorthJersey. com found in its investigation into New Jersey’s $1.5 billion group home system. In most cases, companies investigate themselves. 

"This bill is about building a system that enforces accountability,” said Sen. Joseph Vitale, D-Middlesex, the bill's sponsor. “By authorizing DHS to levy penalties when providers fail to meet safety and care standards, we're sending a clear message: Substandard care will not be tolerated." 

But not all families of individuals with disabilities expect fines to keep their loved ones safe. 

“On their own, imposing financial penalties will not stop ongoing ruthless and disturbing patterns of abuse,” said parent advocate Donna Icovino. "Holding abusers legally accountable would be a crucial turning point in our efforts to protect people with [intellectual or developmental disabilities] that financial sanctions alone cannot match.” 

It is rare for prosecutors to charge companies criminally; NorthJersey.com found just two examples — against Elwyn and Broadway Group Homes — since 2018. 

What could lead to fines?

Among the new fines that first require strong state action, companies would be penalized up to: 

• $5,000 every three months if assigned a Quality Management Team — a panel of state officials that meets periodically to review and fix what’s going wrong at a company. Only seven companies have faced this highest level of state oversight. The bill says the state “may” impose this fine, but doesn’t appear to require it.  

• $25,000 for a substantiated finding from the state Office of Investigations in six categories of serious abuse, neglect and exploitation. But this state office investigates a sliver of such cases each year: In 2024, the Office of Investigations substantiated about 70 cases of abuse, neglect and exploitation — compared with 1,000 substantiated by group homes themselves, according to state incident data.  

• $10,000 for a second provisional license given to homes where inspectors find issues that “directly endanger the health, safety or wellbeing” of residents. Documents show that fewer than 60 homes received a “repeat” or “second” provisional license in the last seven years — meaning a company did not correct issues after inspectors returned. There are more than 2,000 homes across the state. 



• $10,000 on the third time they fail to run required criminal background checks or drug testing of their workers. First, a company would be required to write a plan of correction, and after a second violation, they wouldn’t be allowed to accept new residents. The state currently has the power to suspend admissions but has rarely used it.  

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New Jersey - New law eases guardianship process for parents of disabled children

From the Sparta Independent, January 22, 2026

When Lee-Ellen Pisauro of Sandyston marked her son Sam’s 18th birthday on Dec. 22, 2021, it was not a celebration but the start of a legal struggle that left her unable to make medical and care decisions for her child with Down syndrome.

Under previous New Jersey law, parental authority ended when a child turned 18, even if the child required daily support and advocacy. Although Sam’s needs did not change overnight, Pisauro was required to navigate a lengthy guardianship process before she could resume decision-making on his behalf.

“Professionally, I had peripherally supported families through the guardianship process; however, it was not until I navigated it personally as a parent and presumptive guardian that I experienced the unintended consequences of the procedural timelines embedded in the prior law,” Pisauro said.

Pisauro, who works with special-needs students at Wallkill Valley High School, said the gap in guardianship created uncertainty and disrupted continuity of care.

“Sam was without a guardian until March 22, 2022,” she said. “During that period, my husband and I were unable to manage some of his health care needs, access his medical benefits, or obtain documentation for time-sensitive diagnostic testing.”

Concerned other families would face similar challenges, Pisauro met with former state Sen. Steven Oroho and his deputy chief of staff, Brett Conrads, now chief of staff to Assemblyman Michael Inganamort, to advocate for legislative change.

After Oroho left the Legislature, Inganamort sponsored legislation allowing parents of children with developmental disabilities to apply for guardianship up to 180 days before their child turns 18. The bill, was recently signed into law.

“Parents like Lee-Ellen who have children with medically complex needs or require everyday decision-making assistance are some of the most selfless and tireless advocates I have ever had the pleasure to serve,” said Inganamort, R-Morris. “They shouldn’t have to battle a legal system to ensure their child remains protected.”

Pisauro testified before the Senate Health Committee in early 2024, and the bill later advanced through both chambers of the Legislature. It passed Dec. 22, 2025, and was signed by Gov. Phil Murphy the following day.

Pisauro said the law will help ensure smoother transitions for families who rely on guardianship protections.

“Pursuing guardianship is a personal decision. It’s not for everyone,” she said. “But for those needing this protection, the passage of this law will ensure a smoother transition for vulnerable young adults and their families.”

Read the full article here

New Hampshire convenes committee to review abuse and deaths within disability care system

By William Skipworth, The New Hampshire Bulletin, January 21, 2026

A state committee tasked with evaluating New Hampshire’s disability care system has launched a formal review and scheduled a series of public meetings to discuss the system in the wake of reports of systemic abuse and neglect.

In New Hampshire, people with intellectual and developmental disabilities are entitled to care services paid for and overseen by the state. To provide this care, the state contracts with a network of private agencies. In November, the Bulletin published a series of articles that revealed instances of abuse and neglect — sometimes fatal — committed by caretakers against people with disabilities within this system. State records obtained by the Bulletin show that 467 credible reports of abuse, neglect, and exploitation committed against people in the system were investigated by the state and 119 deaths occurred across the system from January 2023 through the first six months of 2025. The Bulletin found systemic failures of oversight and prevention that allowed the abuse and neglect to happen.

The Systems Review Committee of the New Hampshire Developmental Services Quality Council announced it will be holding eight monthly meetings starting Friday to discuss different facets of the system. At the end of its review, the committee plans to release a final report and a series of recommendations for systemic changes. In a press release, the committee said the meetings “are being held in response to recent reports by the NH Bulletin regarding abuse and deaths within the system.”

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Nebraska - Families urge lawmakers, DHHS to stop Medicaid waiver caps for Nebraskans with disabilities, elderly

By Zach Wendling, The Nebraska Examiner, January 20, 2026

Derek Caster, a 30-year-old Nebraskan with Duchenne muscular dystrophy, worries that proposed changes to how the State of Nebraska administers a Medicaid waiver for the aging and those with disabilities could be the difference between life and death.

At issue is a 238-page proposal from the Nebraska Department of Health and Human Services seeking to cap the number of hours for which live-in, often-family caregivers can be reimbursed under Medicaid for providing in-home care such as to Caster or others. The proposal would also place an annual cost limit on reimbursable care based on a DHHS estimate of nursing home costs statewide.

Caster, other waiver recipients, caregivers and advocates for the elderly and people with disabilities have been among many rallying at the Nebraska State Capitol and urging lawmakers to support them.

“If we get a drop in our quality of care, I know for a fact I would be dead,” Caster said at a Capitol rally last week.

‘A deadly direction’

Nebraska Gov. Jim Pillen supports the proposed DHHS caps and included a DHHS-estimated $14.12 million cut to the Medicaid waiver program in his proposed state budget cuts.

In total, the Pillen budget proposal would cut DHHS’s budget by $152 million. The changes to the “Aged and Disabled Waiver” are among the largest health-related cuts. Lawmakers must balance the budget by late March as they face a projected $471 million state shortfall.

Caster said the current in-home care he receives from his parents, Tammy and Darin, is “exceptional,” in part because they understand his needs and how best to care for his condition, which causes muscles to get weaker over time. 

If those changes result in him having to constantly teach strangers his care routines, including the likelihood of staffing turnover, Caster said, could cause his level of care to “slip detrimentally into a deadly direction.”

“A long, quality life is the right of every disabled Nebraskan,” Caster said.

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Nebraska - State assessment tool for Nebraskans with developmental disabilities leaves families 'scrambling'

By Madison Perales, KETV & (ABC), January 21, 2026

Nebraska families say a newly implemented assessment tool is not accurately evaluating their relatives' needs and reducing care.

Developmental Disability Waiver recipients have to fill out the assessment.

The state's Department of Health and Human Services implemented inteRAI this past summer.

People complete the assessment, then the state uses their responses to decide on funding and support.

According to DHHS, 160 appeals on their results have been submitted since July, including the family we spoke with.

22-year-old Jacob Martinez was diagnosed with severe autism when he was 2, according to his mom Cathy Martinez.

“He does not recognize things like dangerous situations,” Cathy said. “He doesn't recognize stop signs. He doesn't stop for traffic. So, there's a big safety concern if he is not staffed accordingly with a one-on-one accompaniment at all times.”

He became eligible for the Developmental Disability Waiver when he was just 10 years old.

DD Waivers are a Medicaid program meant to help people with this type of disability live independently.

“Which was kind of rare for a minor. So, I think that speaks for his level of severity in need,” Cathy said.

Under the new state-implemented assessment tool for DD waiver users, his needs changed in the eyes of the state.

“In his first inteRAI that was just completed in December, is showing him at a lower level of need," she said.

The new tool is run by inteRAI, aiding the state by conducting these assessments.

On DHHS’ website, it states the department switched assessment tools to save "state administrative funding resources and decreases repetitive participant assessment."

“I think most families are scrambling,” Cathy said.

As president of the Autism Family Network, Martinez knows she's not the only one.

“I've heard of a few that have been raised, but the majority, from what I’m hearing, are people that have lowered their funding tier,” Cathy said.

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Illinois Medicaid program faces funding crisis  

By Peter Hancock, Evanston Now, January 19, 2026

A multibillion-dollar budget crisis will hit the state’s Medicaid program in the next few years unless state lawmakers and Gov. JB Pritzker act to prevent it, budget analysts both inside and outside state government warn.

The crisis comes from changes in federal Medicaid policy that were enacted last year as part of President Donald Trump’s sweeping domestic policy agenda, known officially as H.R. 1, or the “One Big Beautiful Bill Act,” which, among many other things, slashes one of the main funding tools many states have used for four decades to fund their share of the cost of Medicaid.

“By the time you’re a few years in, you’re looking at a $4 – $5 – $6 billion a year hit, and that’s material,” Paula Worthington, a researcher with the University of Illinois’ Institute of Government and Public Affairs, said during a recent interview.

Worthington is a coauthor of a recent IGPA report that describes the upcoming changes in Medicaid funding as one of the most serious long-term fiscal challenges facing Illinois.

The funding tools at issue are known as provider taxes. Those are special taxes that states levy on hospitals, nursing homes, private insurance plans known as “managed care organizations,” or MCOs, and other kinds of health care providers.

States levy those taxes — usually on a per-patient or per-bed basis — and put the money into a fund that is used to draw down federal matching funds. The combination of state and federal funds is then used either to enhance Medicaid reimbursement rates or make direct payments to hospitals and nursing homes that serve large numbers of Medicaid patients to help sustain those facilities financially.

Capping provider taxes

When Medicaid was first established in 1965, it was a relatively modest program that provided health care benefits to people who already qualified for other kinds of public assistance, with costs split between the federal government and the states.

As both the size and cost of the program grew, however, states began looking for new ways to pay for their share of the cost outside of their general revenues. Provider taxes emerged in the mid-1980s as one such mechanism.

By the mid-1990s, Congress began putting controls on state-levied provider taxes. Those included rules that they be broad-based and uniform, meaning they had to apply evenly across an entire class of health care providers and not just those that served Medicaid patients.

The idea was that states were prohibited from holding providers harmless by assuring them they would get all their money back, and then some, once the federal matching funds were drawn down.

But the federal rules also included a “safe harbor” provision. States could avoid having to comply with the hold-harmless prohibition as long as their taxes amounted to no more than 6% of net patient revenue.

That rule has effectively served as a cap on what states can levy in the form of a provider tax. But that cap is about to be cut nearly in half.

Under a provision of H.R. 1 – a provision that only applies to states like Illinois that expanded Medicaid eligibility under the Affordable Care Act – that 6% cap will gradually be cut starting in FY 2028 until it reaches 3.5% in FY 2032.

Impact in Illinois

In FY 2025, according to the Department of Healthcare and Family Services, Illinois spent a total of $33.7 billion through its Medicaid program, making it one of the single largest categories of expenditures in state government.

Of that total, $20.9 billion, or 62%, was federal money while the remaining $12.8 billion came from state funds, including both general revenue and provider taxes.

IGPA reported that provider taxes in FY 2025 amounted to $4.7 billion, or about 37% of all the state funds that were spent on Medicaid. The bulk of that money, according to DHFS, came from two provider taxes, those on hospitals and MCOs.

A recent report by the nonpartisan health policy research organization KFF points out that Illinois stands to lose more than any other state when the reductions take effect because it is the only state whose hospital and MCO assessments are both above the 3.5% threshold.

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Maryland is rethinking how it pays for special education — and it could cost a lot more

By Talia Richman, The Baltimore Banner, January 19, 2026

A new funding model could help, advocates for kids with disabilities say

During 15 years as a special education teacher in Maryland, some things have stayed frustratingly consistent for Stephanie Gawlinski.

“We are always understaffed,” she said. “We are always under-resourced.”

In her classroom at Sandy Spring’s Sherwood High School, Gawlinski teaches algebra to 20 students with a complex array of needs. Some have autism. Others have learning disabilities that make math a challenge. Ideally, she said, her roster would have no more than 10 kids.

“That way they could really get that small group, one-on-one attention that they need in order to learn the topic,” she said. 

Data backs up Gawlinski’s feeling. Studies have determined that chronic underfunding is impeding students with disabilities. And each year school districts across Maryland collectively spend more than $1 billion on special education above what they get from state and federal coffers, according to the Public School Superintendents’ Association of Maryland.

But that could change. 

Maryland’s education department awarded a major contract to the American Institutes for Research, asking the Virginia-based nonprofit to recommend a model that would adequately fund special education. They’ll answer a multipronged question: What is the true cost of teaching children with disabilities in Maryland? And how should that money be parceled out, considering the vastly different needs of each student?

The state’s funding formula allocates a set amount of dollars for each student with disabilities — no matter the nature of their needs. Some people argue this model doesn’t distribute the money fairly.

“Listen, a kid who has a feeding tube and a one-on-one aide is much different than a kid who has speech pathology needs,” said Mary Pat Fannon, director of the superintendents association.

The study, mandated by the legislature, will consider an alternative formula that sets up different levels of funding. Dollars could be distributed depending on the specifics of a student’s disability or the services they need.

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Hundreds rally at Idaho State Capitol over proposed Medicaid cuts

By Dereka Kay, KTVB 7, January 22, 2026

Hundreds of parents, families and advocacy groups packed the Idaho State Capitol on Thursday, urging lawmakers to consider the human impact before finalizing cuts to Medicaid.

Earlier this month, the Department of Health and Welfare sent a letter – dated Jan. 8 but retroactive to Jan. 1 – capping speech, occupational and physical therapy at 20 visits per year for Medicaid patients.

“It’s scary,” said Tom Hemker, who was at the statehouse with his son, Paul.

“My wife and I are parents of a 39-year-old man that has Down Syndrome and occupational therapy," Hemker said. "All the therapies that he's received since birth have made it so that he has a job now."

Idaho Gov. Brad Little's proposed budget for fiscal year 2027 calls for $45 million in Medicaid reductions, including cuts to therapy coverage, home- and community-based services, hospitals, and hospice care. For Paul, the reductions could mean losing the independence he has maintained for 20 years.

“We're really concerned that the cuts to therapies as well as, you know, community-based housing for these guys, so they can be out in the community and not in institutions,” Hemker said.

Scott Thompson, advocating for his 5-year-old daughter with a spinal cord injury, said Medicaid has been essential to her progress.

“She went from being immobile to recently being able to walk with adaptive medical equipment that has impacted her life in a million different ways, and it's impacted our lives as a family in a million different ways," Thompson said. "But the access to that therapy wouldn't be possible without Medicaid."

Thompson added that limiting therapy sessions would force him to pay out of pocket.

“We would have to be multimillionaires to be able to compensate the level of need that she has," he said. "So, it's an untenable position to put families in, especially when we're talking about a service that will literally impact the lives of their kids in perpetuity."

Therapists like Megan Coyle, who works with more than 35 disabled clients weekly, said the cuts would also hurt Idaho businesses.

“I have a lot of Medicaid clients, and if their funding gets cut, suddenly, my clients disappear,” Coyle said. "... The majority of clients will lose the skills that they have developed, because it's hard for them to have consistency in retaining those skills over time."

Continued

FDA Pulls Warning About ‘Potentially Dangerous’ Autism Therapies

By Michelle Diament, Disability Scoop, January 20, 2026

The Food and Drug Administration quietly removed a page from its website warning consumers about bogus products and therapies that claim to treat or cure autism.

The page titled “Be Aware of Potentially Dangerous Products and Therapies that Claim to Treat Autism” was taken down in late December.

“Products or treatments claiming to cure autism are deceptive and misleading, because there is no cure for autism. The same is true of many products claiming to ‘treat’ autism or autism-related symptoms. Some may carry significant health risks,” the FDA had warned on the page.

A spokesperson for the U.S. Department of Health and Human Services said that the article was “retired” at the end of last year as part of a “routine clean up of dated content.” Other older articles were also removed, the agency said.

The notice originated in 2017 and had been last updated in 2019.

The FDA said on the page that it had warned or taken action against companies hawking chelation therapies, hyperbaric oxygen therapy, detoxifying clay baths, raw camel milk, MMS (chlorine dioxide) and essential oils for making “improper claims” related to autism.

The agency’s notice recommended that consumers be wary of products claiming to treat a wide range of diseases and anything with claims of a “quick fix” or “miracle cures” including those marketed as a scientific breakthrough or containing secret ingredients.

None of the information on the FDA webpage was outdated or inaccurate, according to Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University, who’s leading the Coalition of Autism Scientists, a group of more than 300 researchers in the field.

“Removing information about dangerous treatments for autism for which there is no reputable evidence is yet another devastating blow to the autism community,” she said. “The treatments that have been removed, including chelation and hyperbaric oxygen therapy, are extremely dangerous and have already caused deaths to several autistic children. This news is devastating and will likely lead to more deaths to innocent autistic children.”

Continued

Tylenol doesn’t raise risk of autism despite Trump’s claims, review finds 

By Laura Ungar, Associated Press, January 16, 2026

A new review of studies has found that taking Tylenol during pregnancy doesn’t increase the risk of autism, ADHD or intellectual disabilities – adding to the growing body of research refuting claims made by the Trump administration.

President Donald Trump last year promoted unproven ties between the painkiller and autism, telling pregnant women: “Don’t take Tylenol.”

The latest research review, published Friday in The Lancet Obstetrics, Gynecology & Women’s Health, looked at 43 studies and concluded that the most rigorous ones, such as those that compare siblings, provide strong evidence that taking the drug commonly known as paracetamol outside of the U.S. does not cause autism, ADHD or intellectual disabilities.

It’s “safe to use in pregnancy,” said lead author Dr. Asma Khalil. “It remains … the first line of treatment that we would recommend if the pregnant woman has pain or fever.”

While some studies have raised the possibility of a link between autism risk and using Tylenol, also known as acetaminophen, during pregnancy, others haven’t found a connection.

A review published last year in BMJ said existing evidence doesn’t clearly link the drug’s use during pregnancy with autism or ADHD in offspring. A study published the previous year in the Journal of the American Medical Association also found it wasn’t associated with children’s risk of autism, ADHD or intellectual disability in an analysis looking at siblings.

But the White House has focused on research supporting a link.

One of the papers cited on its web page, published in BMC Environmental Health last year, analyzed results from 46 previous studies and found that they supported evidence of an association between Tylenol exposure during pregnancy and increased incidence of neurodevelopmental disorders. Researchers noted that the drug is still important for treating pain and fever during pregnancy, but said steps should be taken to limit its use.

Some health experts have raised concerns about that review and the way Trump administration officials portrayed it, pointing out that only a fraction of the studies focus on autism and that an association doesn’t prove cause and effect. Khalil, a fetal medicine specialist at St. George’s Hospital, London, said that the review included some small studies and some that were prone to bias.

The senior author of that review was Dr. Andrea Baccarelli, dean of the faculty at Harvard T.H. Chan School of Public Health, who noted in the paper that he served as an expert witness for plaintiffs in a case involving potential links between acetaminophen use during pregnancy and neurodevelopmental disorders. Baccarelli did not respond to an email seeking comment on his study.

Continued

Read a related article from MedPage Today here

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