December 12, 2025

Happy Hanukkah

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.

A Most Generous Offer

Once again this year, a long-standing member of VOR has offered to match the contributions we receive between now and the end of this year,

up to $10,000.

This is an opportunity to double your impact.

VOR's 2025 Year-End

Fundraising Campaign

This is the most important time of year for our fundraising.

Most of our membership renewals and donations

will come in the next three weeks.

Once again this year, a long-standing member of VOR has offered to match the contributions we receive between now and the end of this year,

up to $10,000.

This is an opportunity to double your impact.

It's Make-It-Or-Break-It Season for VOR.

Like that little squirrel pictured above, gathering nuts for the months ahead, so it is with VOR.

The contributions we receive in the our fall/winter fundraising campaign cover a significant portion of our expenses in the year ahead.

Please contribute,

so that we may continue to help families like yours.

VOR Podcasts

Episode 5 - Roslyn Leehey

This week, Casey and Brenna speak with VOR's Roslyn Leehey about her son Teddy, the services he receives in an HCBS group home, and their shared experiences.

Many of you have met Roslyn as the host of our

VOR Networking Meetings.

This is your chance to hear her tell her story!

See this, and other Brenna and Casey's other podcasts

on our YouTube page!

Mental health needs of people with intellectual and developmental disabilities can’t be ignored

By Julie Lago, The New Hampshire Bulletin, December 11, 2025

William Skipworth’s three-part investigation in the New Hampshire Bulletin has laid bare the ongoing traumas experienced by people with intellectual and developmental disabilities. The community’s response has been swift — shock, grief, and a collective demand for action to prevent future harm. As the dust settles, pressing questions are emerging about oversight and accountability: Which safeguards broke down? Where is training most needed? And how do we sustain a workforce stretched far beyond its limits?

These systemic questions are essential. But we must also ask: What do the people within these systems truly need? 

People with intellectual and developmental disabilities experience significantly higher rates of abuse, neglect, and exploitation, and yet receive significantly lower rates of mental health screening, crisis support, and therapeutic services. When traumas occur, like those Skipworth reported, many are left without the tools, language, or professional support to process what has happened to them. Too often, their distress is relabeled as “behaviors,” or reduced to a staffing challenge rather than recognized as a mental health need. 

Our systems continue to place people with intellectual and developmental disabilities in silos that ignore the most basic truth: being human comes with mental health needs, whether the system is prepared to see them or not. Skipworth’s series reveals the all-too-common occurrence of reporting a concern and moving people as a solution. Moving people with intellectual and developmental disabilities quickly to new, and often unknown, caregivers and homes is treated as a solution, though often leads to increased complexity.

This is a pattern rooted in a long history of separating disability from humanity, of treating emotional life as optional or irrelevant for people with intellectual and developmental disabilities. We see this in the very laws that shape our mental health system. 

Under NH RSA 135-C:2, the State of New Hampshire defines mental illness in a way that excludes intellectual disability. The intent is not to label intellectual disability as a mental illness, but this statutory separation creates a false choice — treating intellectual disability and mental health as mutually exclusive. The result is not theoretical. It’s lived daily: people with intellectual and developmental disabilities who also have mental health conditions are screened out of services, bounced between agencies, or told they “don’t meet criteria” because their primary diagnosis is intellectual or developmental disability. This was evident in public testimony I attended during the last legislative attempt to amend the statute, where families and providers described their experiences firsthand to state officials. 

The idea of primary diagnosis is intended for clinical professionals to identify the root cause of someone’s impairments in functioning, disregarding the complexity of mental health needs that we all experience. Although the law allows for concrete decision-making for professionals, the assumption that people with intellectual and developmental disabilities do not need mental health support creates potentially dangerous barriers. This exclusion might be legally convenient, but it is clinically dangerous and morally indefensible. 

New Hampshire’s developmental disabilities and mental health systems are primarily accessed through New Hampshire Medicaid. The Community Mental Health Journal references key statistics that show approximately 59% of Medicaid beneficiaries with intellectual and developmental disabilities had at least one mental health condition, compared to approximately 21% of all U.S. adults. Knowing our citizens with intellectual and developmental disabilities are more than twice as likely to experience a mental health condition than those without intellectual and developmental disabilities, we must challenge the current legal definition of mental illness, and the discrimination against people who need support the most.

Continued

Treating Adults with Autism: Maryland Clinical Center Offers National Blueprint for Care After Pediatric Transition

By Deborah Kotz, University of Maryland School of Medicine, December 8, 2025

Adults with autism spectrum disorder (ASD) and other neurodevelopmental disorders (NDDs) often lose access to specialized care once they age out of pediatric services. A new report from the University of Maryland School of Medicine (UMSOM) faculty presents five years of real-world data from their clinical practice at the Clinical Center for Adults with Neurodevelopmental Disorders (CCAND), demonstrating how a state-funded, multidisciplinary care model can close these gaps and serve as a blueprint for other states.

The findings were recently published in the journal Neurology.

“We felt it was vital to provide a practical roadmap based on five years of hands-on experience,” said study corresponding author Peter B. Crino, MD, PhD, Professor and Chair of Neurology at UMSOM and Director of CCAND. “Our data show that with modest state investment, we can deliver comprehensive care that dramatically improves health outcomes and quality of life for adults who have historically been overlooked.”

Nearly six years ago, UMSOM and the University of Maryland Medical Center launched the first-of-a-kind center in Maryland to treat adults with neurodevelopmental disabilities, such as autism and intellectual disability. More than 5 million adults in the U.S. have autism, and about one-third of them have severe developmental disabilities that require intensive medical and nursing care. Adults with neurodevelopmental disorders are living longer and facing complex health challenges, including epilepsy, behavioral issues, and age-related conditions.

Most states, however, lack dedicated programs for these individuals once they leave pediatric care. Without coordinated services, families struggle to manage medical needs, behavioral crises, and social support.

“Continuity of care shouldn’t end at age 18,” said study lead author Pamela Sylvia Cole, LCGC, MS, genetics counselor at UMSOM. “Our center shows that a coordinated team—including neurologists, psychiatrists, genetic counselors, and social workers—can make a life-changing difference.”

The CCAND evaluated 305 adults with neurodevelopmental disorders over the past five years. Patients were seen at both the University of Maryland Medical Center and at the University of Maryland Rehabilitation Institute, which is part of the University of Maryland Medical System. More than 90 percent of these patients came in for repeated visits. The research paper found that 62 percent of patients who came in for evaluations had epilepsy and that nine individuals were diagnosed with seizures for the first time during their visit. The team also found that 71 percent of patients had never undergone genetic testing and that nearly 20 percent of those tested received a new genetic diagnosis. A genetic diagnosis enabled tailored medical management and informed family counseling for these patients.

Many of these patients had tuberous sclerosis complex (TSC) which is among the most common genetic disorders linked to autism. About 1 in 6,000 to 1 in 10,000 babies are born each year with TSC, which is strongly associated with epilepsy. Individuals affected by TSC can have delayed development of speech and language by age two. About 50 percent of affected individuals will have mild to moderate intellectual disability, and they may also have anxiety and attention deficit disorder. More than 80 percent of TSC individuals will have seizures.

The study team found that aggressive behaviors and mental health challenges were common in their adult patients, requiring both medication and behavioral therapy. They also found that social work services helped families access disability benefits, housing, and vocational programs.

“Adults with autism and intellectual disabilities face complex medical and behavioral challenges, and our paper demonstrates that a modest state investment can create a sustainable, multidisciplinary program that improves health outcomes, reduces emergency visits, and enhances quality of life,” said study co-author Jennifer Hopp, MD, Professor of Neurology and Director of the Epilepsy Division at UMSOM. “This is a model that could be replicated nationwide.”

The CCAND model relies on state funding because professional billing alone cannot cover the salaries of essential staff. 

Continued

Senate Fails to Extend ACA Subsidies; Price Hikes Loom

By Lindsey Copeland, Medicare Rights Center, December 11, 2025

Earlier today, the Senate rejected legislation to extend the expiring Affordable Care Act (ACA) tax subsidies for three years. Despite Republican Senators Susan Collins (ME), Josh Hawley (MO), Lisa Murkowski (AK), and Dan Sullivan (AK) joining Democrats in support of the measure, it failed 51-48, well short of the 60-vote procedural threshold.

Senators also blocked a GOP-backed health care bill that sought to expand health savings accounts rather than extend the tax credit enhancements. That bill also included a set of harmful Medicaid policies that were struck from the reconciliation bill (H.R. 1) earlier this year due to budget rules. Sen. Rand Paul (KY) was the only Republican who opposed the plan, citing concerns it “did not go far enough in undoing the ACA.”

These outcomes were all but certain, as neither bill was expected to pass. Rather, today’s votes were largely for messaging purposes, part of the deal Senators struck to end last month’s government shutdown.

Absent a bipartisan solution next week, before lawmakers leave Washington for the holidays, the enhanced credits will expire on January 1 and millions of people will see their health care costs rise dramatically. How such an agreement might come together is unclear, as similar divides exist in the House.

What’s at Stake

The enhanced credits ease ACA Marketplace plan affordability for more than 22 million people, including many older adults who are not yet Medicare-eligible. The credits reduce enrollee premium payments by $705 a year, on average. This assistance has allowed millions of adults ages 50 to 64 buy coverage—spurring a 50% reduction in the uninsured rate among this cohort.

Allowing the enhanced credits to lapse would undermine this progress. Nearly all (92%) of the 5.2 million adults ages 50 to 64 with Marketplace coverage would experience significantly higher costs next year. Premiums could rise by 75% on average, while people in rural areas could see a 90% increase. Older marketplace enrollees are already at a cost disadvantage: under the ACA, insurers can charge people in their 50s and 60s higher premiums than they charge younger adults who purchase the same plan in the same area.

Continued

Congressional Republicans and President Trump Fail to Address Affordability; Health Care Costs Set to Spike for Millions

By Sharon Parrott, Center on Budget and Policy Priorities, December 11, 2025

With premium tax credit (PTC) enhancements that make Affordable Care Act (ACA) marketplace coverage affordable set to expire at the end of this month, Senate Republicans today blocked a bill to extend the enhancements and prevent millions of people from seeing their health care costs spike starting January 1.

Instead of supporting this common-sense and urgently needed legislation, Senate Republicans put forward a partisan proposal from Senators Cassidy and Crapo that fails to extend the PTC enhancements and would leave people with less coverage, higher costs, and more medical debt. Congressional leadership and the White House have similarly blocked any meaningful effort to reach a bipartisan compromise on this critical issue.

Congressional Republicans and the President claim they are serious about addressing affordability issues for people across the U.S., but their continued refusal to negotiate and find a bipartisan solution will cause annual premiums for people with marketplace coverage to more than double on average, including for families, small business owners, young adults, and workers who can’t afford their employer coverage.

The Congressional Budget Office estimates 4 million people will be unable to afford this cost increase and become uninsured. Many people may have already been scared away from marketplace coverage by the higher prices they saw as they shopped for coverage during open enrollment, which started last month.

These coverage losses would come on top of the megabill that Republicans enacted earlier this year, which is projected to leave 10 million people uninsured through cuts to Medicaid and marketplace coverage.

Some who have enrolled for 2026 will make difficult tradeoffs to be able to pay the higher premiums, such as cutting back on groceries and other basics. Others will enroll in less-generous plans that leave them exposed to high out-of-pocket costs and medical debt. And still others may initially enroll and then drop coverage at some point during the year when the premiums prove unaffordable.

At the 11^th hour, Senate Republicans coalesced around a proposal put forward by Senators Cassidy and Crapo that is designed to push people into low-quality plans with high deductibles, leaving people exposed to devastating health care costs if they get sick.

For instance, a 40-year-old in New Orleans making $30,000 a year will pay $1,358 more for their annual premium for a silver-level plan due to the expiration of the PTC enhancements. Cassidy and Crapo's proposal wouldn’t stop this premium hike. Under the proposal, this person could use their now-lower premium tax credit to fully cover the premiums for a lower-value bronze plan, but such a plan would come with a staggering deductible of $9,900. The Cassidy-Crapo plan would deposit $1,000 into a health savings account for a bronze plan holder (but not for someone who struggles to buy better coverage), but that would still leave them with an $8,900 out-of-pocket deductible — nearly 30 percent of their income — before their health insurance kicked in. If this person got sick and needed to be admitted to the hospital for a few days, they would face that $8,900 in out-of-pocket costs before insurance covered any part of their care.

By contrast, if the PTC enhancements are simply extended, this individual could buy a silver plan for $492 a year, about the same as they paid in 2025, with a deductible of only $700, giving them the financial security to seek the care they need.

Read the full article here

CMS Guidance on Medicaid Work Requirements Leaves States Hanging

By Joan Alker, Georgetown University McCourt School of Public Policy, December 11, 2025

CMS released preliminary guidance on H.R. 1’s mandatory Medicaid work requirements on December 8. The much anticipated guidance fell far short of answering all the questions states need answered but it did acknowledge that implementing the Medicaid work reporting requirements mandated by the One Big Beautiful Bill (H.R. 1) will be a “serious undertaking for states that will require policy, operational, and system changes”. H.R. 1 required CMS to issue regulations by June of 2026 leaving a scant six months for states to rejigger their eligibility systems for one of the most complicated policies they will have to administer. Hence expectations were high for some meat on the bones now.

That is an extremely heavy lift on a very short deadline that gets shorter by the day. One Medicaid Director compared the process to having to the fly the plane as we build it. This burden is on top of many other challenges facing states such as, how to make up for the loss of federal Medicaid funding due to other provisions of H.R. 1. Moreover, the complexity of the many exemptions and the need to start educating communities and providers with clear guidance on the who, what, when and how is crucial to avoid even larger coverage losses than we are expecting. (A reminder that the Congressional Budget Office estimated that 5.2 million people would lose Medicaid and become uninsured because of the new work reporting requirements.).

CMS has not yet been able to answer a very simple question – which states do work reporting requirements apply to? The guidance notes that some states that have Section 1115 demonstration waivers for adult expansions may have to comply but says further guidance is forthcoming on which ones.

There were a few interesting nuggets in the guidance although most of it simply restates the statutory language. The section on notification requirements explains that states must alert Medicaid expansion enrollees about the new work reporting requirements by mail (or in electronic format, if elected by individuals) and one other format in a timely manner. It does not specify what second mode of communications should be but mentions, among other options, “an internet website, other commonly available electronic means, and other formats the Secretary determines appropriate.” Posting a notice about the new work reporting requirements on a website is a passive way to deliver the information people need so they don’t inappropriately lose their health coverage. As we know from the recent experience of Medicaid unwinding when many eligible people lost their coverage, many enrollees will not get the letter or open the mail; so to imagine that of their own accord they will be checking the state’s website is absurd. States will need to make a much more serious effort to reach people eligible for Medicaid expansion coverage and help them figure out how to comply with the new law. We know from the unwinding process that in order to keep eligible people enrolled in Medicaid coverage, states must engage in vigorous, multimodal communications that try to reach people multiple times through a variety of formats including text, e-mail and phone.

The guidance also lays out the timeline for the state outreach. The timeline makes clear that the attempt to keep the looming coverage losses out of the public view until after the midterm elections will not be entirely successful. States must start notifying people enrolled in Medicaid expansion coverage about the new restrictions beginning by September at the latest. States wishing to require longer periods of work and community engagement prior to renewal will have to initiate outreach earlier in the summer of 2026.

This is an insufficient timeline given the complexity of the new administrative burdens but it follows the minimum notification requirement included in the statute.

Continued

'Everyone loses': Payers talk sweeping implications of Medicaid cuts

By Anastassia Gliadkovskaya, Fierce Healthcare, December 5, 2025

Policy experts emphasized the far-reaching impact Medicaid cuts are likely to have in a panel at the Fierce Health Payer Summit on Friday morning.

At the annual event, more than 300 attendees gathered for two days to discuss topics like utilization management, member engagement and culturally responsive care. The Friday morning panel, focused on government programs, was moderated by Fierce Healthcare Editor Dave Muoio.

Kimberly Kockler, senior vice president of government affairs at Independence Blue Cross, spoke about the unusual pace of and lack of clarity around federal health-related policy changes under President Donald Trump. The administration has been announcing relevant policies nearly every month, often on social media.

“There’s been something consistently and constantly coming up, but not on normal channels,” Kockler said. Abrupt and unprecedented changes, including to the longstanding vaccine schedule, have led to confusion among patients and providers. “Our members, of course, start to panic,” Kockler noted. “There’s so much ambiguity.” 

Some policy changes go against a health plan’s mission to increase coverage and access, Ellen Sexton, executive vice president and chief growth officer at Blue Shield of California, added. With respect to vaccines, the plan determined, “we're going to continue to cover this, because that's what clinical evidence was saying we should be doing.”

Greg Gierer, founder and managing principal of Hilltop Health Policy Advisors, noted the cuts will disproportionately impact Medicaid expansion states. “It’s really shifting costs onto the states, and then states are going to have to make very difficult decisions,” Gierer said. Somewhat counterintuitively, urban hospitals are most at risk from the cuts. “If a hospital closes because of this, that doesn’t just affect Medicaid patients. Everyone loses,” Gierer said. 

Half of states don’t have enough in their budgets to pay for their Medicaid obligations, Kockler said. Medicaid is typically a third of a state’s budget already. “It’s daunting for state governments,” Kockler said, adding it’s crucial for payers to be partners to states. Independence Blue Cross is also seeing a significant interest in Medicare from state regulators, as concerns around broker compensation for Medicare Advantage plans grows. “To me, that is just another signal that we are in a different time and a different place,” Kockler said.

In general, the cuts will impact the system writ large. The “ripple effects” will be felt when people lose coverage, get sicker, overburden hospitals and then that trickles out to all payers, Sexton said. With the organization’s Promise Medi-Cal plan, Blue Shield of California is thinking about creative ways to support members beyond policy. Initiatives under consideration include using AI for eligibility checks and helping people complete their GED degrees to fulfill work requirements. Payers deliver “well beyond insurance,” Sexton said, “and we have to continue to think about that, because that's what actually influences the health outcomes at the end of the day.”

Gierer was surprised the Medicaid cuts got worse than what passed the House once the budget reconciliation bill made it to the Senate. The Congressional Budget Office report, which typically accompanies major bills before they are voted on, Gierer added, also wasn’t released until several weeks after the vote was held. “These markups and deliberations were really done in such haste that I’ve never seen before,” Gierer said. “The reason they operated in such haste and secrecy is because these provisions really can’t withstand scrutiny and can’t be defended if they were brought to light.”

Read the full article here

Private Equity and the Surge in Autism Services

By Alixandra Gould, Mindy Lipson, and Melinda Dutton, The 80 Million, December 9, 2025

The CDC estimates one in 31 children and one in 45 adults in the U.S. are autistic. That’s millions of people — each with unique needs that can change over a lifetime. The higher rates of autism diagnosis are due primarily to a wider awareness of the condition, the broadening of its definition and more widely available screenings, especially for children. About 5% of kids with Medicaid or the Children’s Health Insurance Plan have received an autism diagnosis, according to CMS — a rate that’s higher than the percentage of uninsured and privately insured kids.

Applied behavior analysis (ABA) is the most widely prescribed therapy for kids with autism, but it is still a relatively new service for states and commercial plans. ABA focuses on social and other environmental modifications to change behaviors and build skills. In 2014, CMS clarified that Medicaid must cover medically necessary autism treatments, including ABA, under the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit. That action helped expand access to ABA. However, families still hit walls — including thin provider networks, patchy expertise and uneven care planning. Since then, ABA clinical standards and guidelines have continued evolving, oversight remains a work in progress, and states and commercial plans are grappling with defining the quality and utilization standards and measures.

Meanwhile, the ABA provider market is booming — fueled in part by increased interest from private equity (PE). With growing payer and patient bases, PE has seen an opportunity to jump into the autism services market and scale for-profit chains at breakneck speed —bringing with it growing pains. Families and clinicians are sounding alarms about inconsistent quality, which watchdogs have linked to the proliferation of PE investment. A 2023 Center for Economic and Policy Research report found payers are “not able to determine the quality of services provided during any time period — especially in terms of clinical staff-patient ratios or types of learning tasks that occur.” Research shows PE-backed ABA providers are more likely to run high caseloads, experience staff churn, and lean on cookie-cutter treatment plans — sometimes prescribing more hours than needed. And, while ABA is an important part of the continuum of care for autism, some policymakers have raised concerns about families being directed to ABA services when respite or paid caregiving would be better for them (and likely more cost efficient for states).

The result? ABA spending is skyrocketing. North Carolina expects a 425% jump in Medicaid ABA spending from 2022 to 2026. Indiana’s payments rose 607% in three years; Nebraska’s up nearly 2,000% in five. This surge far outpaces both Medicaid enrollment and the rise in autism diagnoses and has led to federal and state Office of Inspector General (OIG) investigations. Some fear that ABA could crowd out other vital Medicaid services that states are not required to cover, including home- and community-based services and support for people with intellectual and developmental disabilities (I/DD).

To stem the flood, policymakers across the country are starting to develop and implement reforms to ensure the provision of high-quality care for autism, and shore up the continuum of autism services, while reining in practices that prioritize provider volume over patient need. 

Continued

New Mexico House Republicans request federal investigation of state developmental disability program

By Clara Bates, The Santa Fe New Mexican, December 10, 2025

New Mexico House Republicans this month requested that the federal Department of Justice conduct an investigation of the state’s developmental disability waiver program, alleging a “long history of problems” including waitlists and provider shortages they say state attorney general has “refused” to review.

The Republicans’ letter acknowledges some progress has been made in improving the program, but states “the involvement of the U.S. Attorney’s Office in conducting a federal investigation of the program would send a strong signal to the Health Care Authority’s staff, service providers, family caregivers, and program recipients that essential services must be provided and those with developmental disabilities must be treated with the utmost respect.”

The letter, dated Dec. 2 and addressed to Acting U.S. Attorney for the District of New Mexico Ryan Ellison, was shared in a House GOP news release Wednesday afternoon, and signed by the Republican House caucus. It specifically alleges problems with the waiting list, lack of providers and lack of financial compensation for family caregivers.

Link to article here

Federal, state budget pressure threatens Missouri at-home disability care program

By Steph Quinn, The Missouri Independent, December 10, 2025

Families of Missourians with developmental disabilities are urging legislators to protect a Medicaid program that allows them to manage their loved ones’ care as the state faces billions of dollars in federal cuts over the next decade.

The program, self-directed services, lets people with disabilities or their family members hire, train and manage their own care staff, tailored to their needs. Missourians who use the program say it helps people with disabilities live more independently at home instead of going into costly institutional care. 

And they say that’s a net win for people with disabilities, their families and the state.

“We are the state’s most vulnerable citizens,” * said Larry Opinsky, a disability advocate and steering committee member of the Missouri SDS Support Group, an advocacy organization that represents families who use the program. “Without this support, the only way for our loved ones to receive the level of care they need in order to be healthy and safe would be in an institutional setting, and those costs are astronomically high.”

With the state poised to limit spending in anticipation of federal cuts to safety net programs, the group argued in a Nov. 11 online meeting with state lawmakers that the program is more economical and humane than state-operated treatment facilities.

Contributing to the state’s budget woes are over $900 billion in anticipated cuts to federal Medicaid funding in the next decade — part of the One Big Beautiful Bill Congress passed in July. Missouri could lose 14% of its federal Medicaid funding, somewhere between $11 and $18 billion over 10 years, according to KFF.

Self-directed services are an optional part of state Medicaid programs, which members of the group fear clouds the program’s future.

But Opinsky and Victoria McMullen, the group’s steering committee chair, said self-directed services aren’t optional for families who use them.

Continued

* Not to belittle the needs of those with IDD who seek self-directed services, but we would argue that those who qualify for self-directed services are not the most vulnerable people in the state of Missouri. There are people with far more significant intellectual disabilities who are not receiving services, or are in danger of losing their services, who are far more vulnerable.

Louisiana abruptly cuts two Medicaid contracts, putting care options for 488,500 in limbo

By Julie O'Donoghue, The Louisiana Illuminator, December 9, 2025

Update: On Tuesday morning, after this story had been published, the Louisiana Department of Health announced it was going to move forward with its contract with Aetna Better Health of Louisiana. The contract with UnitedHealthCare of Louisiana will still end Dec. 31. (Note: This means only 330,700 people will be affected).

Original Story: 

Gov. Jeff Landry’s administration is abruptly ending contracts with two of the six companies that provide Medicaid insurance in Louisiana, a move that could leave 488,500 residents uncertain of what health care they will have starting Jan. 1. 

Seth Gold, Louisiana’s Medicaid director, sent short letters last week to the CEOs of Aetna Better Health of Louisiana and UnitedHealthCare of Louisiana announcing their contract extensions with the state had been dropped for 2026. The Illuminator obtained copies of the letters Monday from the Louisiana Department of Health. 

“LDH will begin the transition process of moving your Medicaid members to other contracted Medicaid Managed Care Plans for a Jan. 1 effective date,” Gold wrote in the letters to the companies dated Dec. 2.

The news came as a surprise to state lawmakers, who voted less than two weeks ago to extend the state’s agreements with both companies at the urging of the Landry administration.

Attorney General Liz Murrill and other state officials said litigation over pharmacy benefit managers affiliated with Aetna and UnitedHealthCare were factors in stepping away from agreements with the companies. 

Spokespeople for the companies did not respond to requests for comment Monday evening. 

Aetna and UnitedHealthCare provide Medicaid insurance for 157,800 and 330,700 Louisiana residents, respectively, covering one-third of its 1.53 million enrollees.  

Continued

Florida - House Speaker Daniel Perez seeks cuts, restrictions, for safety-net programs

By Christine Sexton, Florida Phoenix, December 9, 2025

House Speaker Daniel Perez on Tuesday rolled out a far-reaching proposal to cut Medicaid and a low-cost state children’s health insurance program while tightening work requirements for people who rely on the state’s food-assistance program.

Contained in two separate bills — HB 693 and HB 697 — dubbed “Florida’s New Frontier in Healthcare” by Perez, the package would change Florida statutes as necessary to implement the “One Big Beautiful Bill” passed by Congress at the urging of President Donald Trump.

HB 693 would require people on food assistance who are not disabled and who don’t have young children to show they are working through age 64. Florida law now requires people to show they are working through age 59. 

The bill would keep certain immigrants, including refugees, asylees, parolees, and abused spouses and children, from enrolling in Medicaid or the federal Supplemental Nutrition Assistance Program (SNAP).

The House had not prepared or released a legislative analysis or estimated fiscal impact for either bill.

Florida has since 2018 limited Medicaid retroactive eligibility for adults to just one month. It was a cost-saving change championed by former Gov. Rick Scott, who had to convince the federal government to waive its rules so it could be implemented.

The One Big Beautiful Bill, though, allows states to pare back Medicaid eligibility for pregnant women and children from three months to two. Perez’s proposal would change state law to allow it to happen. And it wouldn’t require additional federal approval.

“President Trump’s bold leadership through the One Big Beautiful Bill set the standard for real, results-driven healthcare reform, and Florida is proud to lead the way in implementing that vision at the state level,” Perez said in a prepared statement.

Continued

North Carolina Gov. Stein cancels Medicaid rate cuts amid legal and legislative battles

By Gary D. Robertson, Associated Press, December 10, 2025

North Carolina Democratic Gov. Josh Stein is canceling Medicaid reimbursement rate reductions he initiated over two months ago, preserving in the short term access to care for vulnerable patients while a political fight with Republican legislators to enact additional funding gets resolved.

Stein and state Health and Human Services Secretary Dr. Dev Sangvai said at a Wednesday news conference that the state agency would restore reimbursement rates for doctors, hospitals and other medical providers of Medicaid services, which otherwise generally had been cut by 3% to 10% starting Oct. 1.

The governor had said the reductions, while unsettling for some Medicaid patients and providers, were needed to deal with a funding shortfall for Medicaid, which serves more than 3 million people in the ninth-largest state. The shortfall is not directly related to President Donald Trump’s new law that in part cuts Medicaid nationwide. North Carolina, like other states, is carefully monitoring program spending in case of possible future financial demands because of it.

Legal challenges to the North Carolina reductions resulting recently in judicial rulings demanding some rates return to pre-October levels made maintaining the reductions untenable.

“What has not changed is the program doesn’t have enough money. What has changed is that the courts have made very clear that the rates have to go back,” Stein told The Associated Press in an interview.

The first-year governor said the reductions were unavoidable because a stopgap spending measure the legislature approved in the summer fell $319 million short of what was needed to address population changes and rising health care costs.

“The legislature forced these cuts onto the program,” Stein said. “It was absolutely nothing that the department or I wanted to have happen.”

But Republican legislators repeated Wednesday that Stein’s rate reductions were unnecessary and politically motivated, carried out early in the fiscal year when Medicaid funds were readily available.

Stein “manufactured a crisis out of thin air, and regular North Carolinians paid the price for it,” GOP state Rep. Larry Potts, a health budget writer, said in a news release. “I’m glad he’s finally cleaning up his mess, but it should’ve never gotten this far.”

Still, state House and Senate GOP leaders tried but could not work out this fall legislation to provide extra money that would buttress the program longer.

Continued

Governor reverses Medicaid cuts. Whether and when lawmakers will act to fix funding shortfall is unclear.  

By Sarah Michels, Carolina Public Press, December 11, 2025

It may be too soon to celebrate after Gov. Josh Stein reversed Medicaid reimbursement provider cuts implemented in October, restoring access to cut services across North Carolina. 

The Dec. 10 reversal is only the latest development in a high-stakes political battle between Stein, the state House and state Senate; according to the Department of Health and Human Services, a $319 million Medicaid funding shortfall remains.

Like their national counterparts, North Carolina’s lawmakers and governor can’t get on the same page on health care. Despite the reversal, they’re not planning to solve the problem next week, during a scheduled December legislative session. 

In the meantime, it could take between 30 and 60 days for insurance companies and managed care organizations to restore rates to levels prior to the cuts, according to North Carolina Healthcare Association spokesperson Stephanie Strickland. Providers must also submit claims paid at reduced rates. 

Strickland said the reversal was “an encouraging step toward stability for providers and the patients who depend on them.”

“As Medicaid continues to face financial pressures, we stand ready to work with the Governor and General Assembly on immediate and long-term solutions to strengthen health care delivery across North Carolina,” the statement continued. 

In an update, the Department of Health and Human Services was clear that the reversal will not help in the long run. Without the ability to manage the funding gap with rate reductions, the only hope for relief is the legislature, the update stated. 

“As a result, the Medicaid program is projected to run out of money early next year. If this happens, the consequences will be far more severe than the rate change. The stability of the entire Medicaid program — and the care provided to more than three million North Carolinians — is at risk.”

Read the full article here

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Our loved ones' caregivers are essential to their health, safety, and happiness.

In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to receive our newsletter.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at

info@vor.net

with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

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

VOR SUPPORTS:

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

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

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

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

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

Accelerating Kids' Access to Care Act -

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

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

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

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

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

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

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

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

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

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

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



VOR OPPOSES:

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

S.2438 - Transformation to Competitive Employment Act (Sen. Chris Van Hollen (D-MD) - A bill to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support people with disabilities through competitive integrated employment, to phase out the use of such special certificates, and for other purposes. 

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