January 2, 2026

Happy New Year!

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.

Help us to help families like yours

As the year begins, we'd like to share with you our renewed resolve to speak out for the rights and dignity of all people with intellectual and developmental disabilities and autism (ID/A), and for our determination to speak truth to power about the needs of the most vulnerable and underserved.

One particular population still stands out as falling between the cracks in our siloed system of services: the "Dually-Diagnosed" - people with ID/A with co-occurring severe mental illnesses or psychiatric symptoms such as schizoaffective disorders. Most state systems have yet to develop appropriate residential care or at-home services for these individuals.

Medical, Psychiatric, and Mental Health professionals are beginning to pay more and more attention to this growing cohort of individuals, but the bureaucracies and government agencies that are tasked with providing long-term services and supports need to learn more about this population and develop a comprehensive system of services to fit into our continuum of care.

And it is our resolve this year to help bring this problem to their attention.

The following article was printed in 2020, but shows how far we have yet to go.

Toward Actionable Practice Parameters for “Dual Diagnosis”: Principles of Assessment and Management for Co-Occurring Psychiatric and Intellectual/Developmental Disability

By John M. Constantino, Shae Strom, Michael Bunis, et al, National Institute of Health / National Library of Medicine, February 1, 2020.

Recent Findings

Individuals with IDD are at high risk for the development of psychiatric symptoms (PS), which often manifest uniquely in IDD and for which evidence for effective intervention is steadily accruing.

Summary

Interventions that are commonly implemented in the IDD service sector (e.g., functional communication training and positive behavioral support planning) are capable of mitigating severe behavioral impairment, yet rarely invoked when dual diagnosis patients are seen in the psychiatric service sector. Conversely, state-of-the-art interventions for traumatic stress, pharmacotherapy, and psychotherapy have proven capable of improving behavioral impairments in IDD but are typically restricted to the psychiatric service sector, where there exist significant barriers to access for patients with IDD, including limitations imposed by diagnostic eligibility and practitioner experience. Bridging these gaps in knowledge and clinical capacity across the respective IDD and PS service sectors should be of very high priority in strategizing the care and support of IDD patients with serious co-occurring psychiatric conditions.

Introduction

Although there have been extensive reviews of the literature on the clinical treatment of individual developmental and psychiatric disorders, there is much less information on the approach to patients with combined intellectual/developmental disabilities (IDD) and psychiatric syndromes (PS). Despite the limited literature on combined presentations, individuals with IDD are at a disproportionately high risk of developing PS [1–7]. The high level of unmet clinical needs of individuals with such comorbidities is compounded by the fragmentation of the municipal systems designated for their care, which are commonly fragmented into separate and nonoverlapping bureaucracies—one for developmental disability and another for behavioral health services. Since patients with dual diagnoses may have severe and persistent impairments in adaptive function (a glossary for definitions of this and other selected terms is provided in Table 1), they are often heavily reliant on governmental systems of care. Lack of knowledge and experience [8], and insufficient clinical infrastructure for patients with multiple disabilities results in less effective services and interventions that too-often fail to meet the needs of individuals with co-occurring IDD and PS.

The emergence of PS in individuals with IDD poses many serious challenges for interpretation of symptoms, diagnosis, and optimization of treatment, both for clinicians and for the service sectors which deliver care to support such individuals. Fortunately, serious efforts to establish expert consensus on refining the application of psychiatric diagnostic criteria to patients with intellectual disability has resulted in an important resource for clinicians now in its second edition, the Diagnostic Manual-Intellectual Disability (DM-ID-2), published by the National Association for Dual Diagnosis. Recognizing, however, that there exist very few definitive resources for best practice under the circumstance of this form of “dual diagnosis,” the Missouri Department of Mental Health recently convened an expert multidisciplinary panel to conduct a focused review of the relevant scientific literature and to develop guidance in the form of clinical decision support for three of the most common and impairing clusters of psychiatric symptoms that co-occur with IDD—aggression, depression, and the addictions—within the context of two major categories of IDD: intellectual disability, autism spectrum disorder, and their combination. One of the obvious complexities in any attempt to develop assessment and intervention guidelines for dual diagnosis is the wide variation in IDD severity within the population. For example, DSM-5 parameterizes the degree of impairment of autism spectrum disorder (ASD) according to level of necessary support (requiring support, substantial support, or very substantial support). This stratification does not necessarily result in actionable categorizations relating to an individual’s functional communication skills, cognitive/developmental abilities (including presence of intellectual disability, which co-occurs with ASD in about 25% of patients), and daily living skills. Moreover, an individual’s age and developmental level (infancy, early childhood, school age, adolescence, adulthood, senescence) must also be considered in any algorithm for identifying and treating PS.

Read the full article here

VOR remains dedicated to protecting Choice for individuals and their families or guardians, a full continuum of care in residential services and a full array of employment opportunities for individuals with ID/A.

We will continue to protect and improvre the ICF System as well as Home and Community Based Services. We will continue to stand up for our rights to our members of congress, and we will continue to meet with officials at CMS and DOJ to help make them aware that their policies remain directed toward outdated goals that fail to understand the needs of the current, underserved population of individuals with ID/A.

We will continue to promote the need for oversight in the system, and to try to hold government-funded organizations like State Protection and Advocacy agencies to account for their failure to protect our loved ones from abuse and neglect.

And vow to do all we can to support our caregiver workforce, the Direct Support Professionals who are, in and of themselves, and underserved and under-respected part of our Health Care system.

While the following articles do not directly affect ICFs or HCBS services, they do affect our hospital system, and the erosion of the larger system of support services that affect the services that our loved ones rely upon.

While some argue that the $1 trillion in cuts to Medicaid will improve the system and bring it into the policies of the Trump administration, HHS Director Robert F. Kennedy, Jr., and CMS Director Dr. Oz, other ID/A advocates believe that this level of cuts are ill-considered and are likely to have drastic, unintended consequences for the most vulnerable Americans.

CMS Announces Establishment of the Office of Rural Health Transformation

Press Release, Center for Medicare and Medicaid Services, December 29, 2025

CMS Announces Establishment of the Office of Rural Health Transformation

New Office Will Continue Leading Implementation of the $50 Billion Rural Health Initiative

The Centers for Medicare & Medicaid Services (CMS) has announced the establishment of the Office of Rural Health Transformation (ORHT) within the Center for Medicaid and CHIP Services (CMCS). Following the creation of the Rural Health Transformation (RHT) Program earlier this year under President Trump’s Working Families Tax Cut legislation (Public Law 119-21), CMS has been carrying out this work and has now formally established ORHT within its organizational structure. The office will continue overseeing the RHT Program — a historic, $50 billion initiative to strengthen rural health systems and expand sustainable access to care nationwide.

“Healthy communities start with access to reliable care, no matter where you live,” said Health and Human Services Secretary Robert F. Kennedy, Jr. “By establishing the Office of Rural Health Transformation, we are making sure this historic investment delivers real results for rural families and strengthens health systems for the long term.”

ORHT, which announced approved awardees on December 29, 2025, will guide states in implementing their rural health transformation plans, provide technical assistance, coordinate federal and state partnerships, and ensure strong oversight and accountability throughout the five-year program, which will run through September 30, 2031.

“The Rural Health Transformation Program represents a generational investment in the health and vitality of rural America,” said CMS Administrator Dr. Mehmet Oz. “By formally establishing the Office of Rural Health Transformation, CMS is reinforcing its commitment to strong leadership, accountability, and partnership as states prepare to turn this investment into lasting improvements for rural communities.”

Continued

Related article:

Trump administration rolls out rural health funding, with strings attached

By Devi Shastri and Margery A. Beck, Associated Press, December 29, 2025

States will share $10 billion for rural health care next year in a program that aims to offset the Trump administration’s massive budget cuts to rural hospitals, federal officials announced Monday.

But while every state applied for money from the Rural Health Transformation Program, it won’t be distributed equally. And critics worry that the funding might be pulled back if a state’s policies don’t match up with the administration’s.

Officials said the average award for 2026 is $200 million, and the fund puts a total of $50 billion into rural health programs over five years. States propose how to spend their awards, and the Centers for Medicare and Medicaid Services assigns project officers to support each state, said agency administrator Dr. Mehmet Oz.

“This fund was crafted as part of the One Big Beautiful Bill, signed only six months ago now into law, in order to push states to be creative,” Oz said in a call with reporters Monday.

Under the program, half of the money is equally distributed to each state. The other half is allocated based on a formula developed by CMS that considered rural population size, the financial health of a state’s medical facilities and health outcomes for a state’s population.

The formula also ties $12 billion of the five-year funding to whether states are implementing health policies prioritized by the Trump administration’s “Make America Healthy Again” initiative. Examples include requiring nutrition education for health care providers, having schools participate in the Presidential Fitness Test or banning the use of SNAP benefits for so-called junk foods, Oz said.

The money that the states get will be recalculated annually, Oz said, allowing the administration to “claw back” funds if, for example, state leaders don’t pass promised policies. Oz said the clawbacks are not punishments, but leverage governors can use to push policies by pointing to the potential loss of millions.

“I’ve already heard governors express that sentiment that this is not a threat, that this is actually an empowering element of the One Big Beautiful Bill,” he said.

Experts say fund is inadequate in face of other cuts

Oz and other federal officials have touted the program as a 50% increase in Medicaid investments in rural health care. Rep. Don Bacon, a Republican from Nebraska who has been critical of many of the administration’s policies but voted for the budget bill that slashed Medicaid, pointed to the fund when recently questioned about how the cuts would hurt rural hospitals.

“That’s why we added a $50 billion rural hospital fund, to help any hospital that’s struggling,” Bacon said. “This money is meant to keep hospitals afloat.”

But experts say it won’t nearly offset the losses that struggling rural hospitals will face from the federal spending law’s $1.2 trillion cut from the federal budget over the next decade, primarily from Medicaid. Millions of people are also expected to lose Medicaid benefits.

Estimates suggest rural hospitals could lose around $137 billion over the next decade because of the budget measure. As many as 300 rural hospitals were at risk for closure because of the GOP’s spending package, according to an analysis by The Cecil G. Sheps Center for Health Services Research at the University of North Carolina at Chapel Hill.

“When you put that up against the $50 billion for the Rural Health Transformation Fund, you know — that math does not add up,” Cochran-McClain said.

She also said there’s no guarantee that the funding will go to rural hospitals in need. For example, she noted, one state’s application included a proposal for healthier, locally sourced school lunch options in rural areas.

And even though innovation is a goal of the program, Cochran-McClain said it’s tough for rural hospitals to innovate when they were struggling to break even before Congress’ Medicaid cuts.

“We talk to rural providers every day that say, ‘I would really love to do x, y, z, but I’m concerned about, you know, meeting payroll at the end of the month,’” she said. “So when you’re in that kind of crisis mode, it is, I would argue, almost impossible to do true innovation.”

Read the full article here

And...

Trump admin doles out billions for rural health

By Alice Miranda Ollstein and Ruth Reader, Politico, December 29,2025

The Trump administration on Monday doled out billions to states from a fund Congress created to “transform” rural health care. The funds, however, will be lavished more generously on small states and states that adopt administration friendly policies.

“The purpose of this $50 billion investment in rural health care is not to pay off the bills,” Dr. Mehmet Oz, head of the Centers for Medicare and Medicaid Services, told reporters Monday. “The purpose of this $50 billion investment is to allow us to rightsize the system and to deal with the fundamental hindrances of improvement in rural health care.”

He said disbursements for states are between $145 million and $281 million for 2026, amounts largely driven by how large a state’s rural population is. Annual allotments will be reassessed based on states’ ability to meet the criteria laid out in their applications.

The national reaction to the program has been mixed since it was announced this summer.

Some lawmakers and rural health advocates are upset that states are receiving billions more in funding for passing policies favored by the Trump administration.

Officials in some Democrat-led states accused the Trump administration of using the program to punish its perceived rivals and reward allies.

Others take issue with the fact that the program administered by the Centers for Medicaid and Medicaid Services divided much of the fund evenly among states, giving those with small populations a much bigger per-capita windfall. Montana and California, for instance, will receive near equal amounts in 2026, despite their massive size disparity.

And even fans of the program stress that it won’t come close to making up for the deep cuts to Medicaid that states are bracing for in 2026.

In Arizona, “we expect the impact of just the Medicaid cuts alone to be $34 billion over the next 10 years,” the state’s Democratic Gov. Katie Hobbs told reporters in November, adding that the state will receive at most $5 billion from the Rural Health Transformation Program. “The math doesn’t work there, but it will do a lot to help mitigate some of the impact, especially as we’re going to see a decline in access to health care in rural communities.”

Complaining, however, is likely all that state officials will be able to do. The program, created this summer as part of Republicans’ megabill that cut taxes and the social safety net, explicitly bars states from appealing to the Trump administration for more money or suing over their allotment.

And if states fail to adopt the promised policies, CMS can reduce future funding amounts. On the call with reporters, Oz said the funding clawback mechanism isn’t meant to penalize states. Rather, he sees it as a bargaining chip for governors to use in power clashes with their state legislatures.

For example, he said, a governor may want to make the Presidential Fitness Test mandatory in schools, but can’t get the state legislature to pass a law implementing it.

“He can now say, ‘Guys, we’re going to lose millions of dollars because CMS has been authorized by Congress to pull back part of our funding. We don’t want to do that, so let’s just get this thing out of our state legislature.”

Continued

Dismantling the American Research Enterprise

By Don Ingber, MD, PhD, MedPage Today, December 26, 2025

Since the Trump administration's antagonistic actions against universities this spring, the direct attack on Harvard has ceased, at least temporarily, and most of the lost grant funding has been restored.

Yet, we in academic medicine still have much to fear.

America's leadership for the past 75 years was based not just on military might, but on a unique "social contract" between the federal government and the scientific community. This framework was simple: the government would provide robust funding and scientific autonomy, and in return, the academic scientific research enterprise would drive national health, prosperity, and security. In the last 9 months, that contract has been shredded.

Key to this contract was the understanding that science must be free from political manipulation to be effective. But with each month that passes, we see an increasing loss of scientific autonomy with a concomitant increase in political oversight of research funding and an emphasis on ideology over evidence-based decisions. The Trump administration has systematically replaced independent experts with political appointees or industry representatives and aggressively restructured various scientific advisory boards. HHS Secretary Robert F. Kennedy Jr.'s decision to fire and replace the entire

CDC Advisory Committee on Immunization Practices is a prime example.

While Congress continues to be supportive of science, the executive branch has proposed significant reductions in funding for the NIH, the National Science Foundation, and National Aeronautics and Space Administration (NASA), and it has used its impoundment powers to freeze appropriated funds. In a recent visit to Boston, NIH Director Jay Bhattacharya, MD, PhD, announced a new emphasis on "geographic balance" in funding decisions, suggesting an end to the scientific meritocracy that has been critical for the U.S. to lead in research.

Equally concerning is the administration's proposal to cut support for "indirect costs." These funds are a lifeline for the nation's research laboratories because they cover the "costs of doing business" -- to keep the lights on, maintain hazardous waste disposal, and support the complex compliance infrastructure required for any institution to receive government funding. The proposed reduction of indirect cost reimbursements to 15% will force universities and academic hospitals to either shift funds from education and clinical care to cover research or shut down research operations. Unfortunately, the latter is already happening, with many institutions announcing staff layoffs and universities closing or reducing the size of graduate programs.

The final decisions on research funding remain to be worked out. However, what is clear is that this government has effectively discarded its social contract with the scientific community. We are watching the dismantling of the American research enterprise, and this self-sabotage could not come at a worse time. The economic competitiveness of the 21st century will be decided by leadership in biotechnology, artificial intelligence, and clean energy. By defunding the basic research and technology innovation that underpins these industries, we are ceding economic ground to other nations. The stalling of medical research also means delays in development of treatments for Alzheimer's, stroke, sepsis, and numerous other diseases that will be measured in human lives.

Continued

New science points to 4 distinct types of autism

Scientists are redefining autism as a complex condition with multiple forms, challenging traditional notions.

By Ariana Eunjung, Cha, The Washington Post, December 26, 2025

When Marc and Cristina Easton’s son was diagnosed with autism at 20 months, the Baltimore couple left the doctor’s appointment in confusion. Their toddler — who was very social — didn’t resemble the picture of the condition they thought they knew. And the specialists could offer little clarity about why or what lay ahead.

It wasn’t until four years after their child’s diagnosis that the Eastons finally began to get answers that offered them a glimmer of understanding. This summer, a team from Princeton and the Flatiron Institute released a paper showing evidence for four distinct autism phenotypes, each defined by its own constellation of behaviors and genetic traits. The dense, data-heavy paper was published with little fanfare. But to the Eastons, who are among the thousands of families who volunteered their medical information for the study, the findings felt seismic.

“This idea that we’re seeing not one but many stories of autism made a lot of sense to me,” Cristina said.

For decades, autism has been described as a spectrum — an elastic term that stretches from nonverbal children to adults with doctorates. Beneath that vast range lies a shared pattern of social communication and behavioral differences, long resistant to neat explanations.

Now, advances in brain imaging, genetics and computational science are revealing discrete biological subtypes. The discoveries could one day lead to more accurate diagnoses and treatments — raising profound questions about whether autism should be seen as something to cure or as an essential facet of human diversity.

There are a few high-impact mutations that alone appear to lead to autism. But researchers now suspect that the majority of cases arise from a subtler genetic architecture — common variants scattered throughout the population that, in certain combinations and under certain environmental conditions, can alter development.

And while recent public discourse has been clouded by misinformation about the role vaccines play in autism, Tylenol and what factors cause the condition, the new analysis is gradually illuminating the science of autism’s beginnings. It suggests that some children may have genetic mutations when they’re born that activate at different times in life — a reflection of varying paths that emerge at different moments.

Natalie Sauerwald is one of the lead authors of the subtypes study and a computational biologist at the Flatiron Institute, part of the Simons Foundation, which funds scientific research. She compared earlier autism research to assembling a jigsaw puzzle, only to find that the pieces didn’t quite fit — not because the image was unclear but because “the box had always contained several puzzles, shuffled together.”

There isn’t just one autism, Sauerwald said: “There are many autisms.”

Genetic roots

Pinning down who counts as autistic has always been complicated. The condition manifests in an extraordinary range of ways — across genders, abilities and life experiences — defying any single definition. Boys are far more likely to receive a diagnosis than girls, though many researchers suspect that girls are frequently overlooked because their symptoms may appear less disruptive or more easily masked.

In recent years, as diagnostic criteria have broadened, the number of people identified as having autism has risen sharply. Most of the growth has been in those who have more mild symptoms as opposed to those who are profoundly impacted and have minimal or no language or have an intellectual disability, according to Centers for Disease Control and Prevention data. About 1 in 150 children were diagnosed with autism in 2000 in U.S. communities examined by the Centers for Disease Control and Prevention; by 2022, that figure had climbed to 1 in 31. The increase may look staggering, but many experts say it reflects not an epidemic of autism itself but a greater understanding of its many forms — and a society becoming more attuned to recognizing them.

When Sauerwald began analyzing the autism database managed by the Simons Foundation, a science nonprofit, and housing information on over 5,000 children, she expected the results to be messy. The spectrum spans such a wide range that she assumed the categories would blur together, like overlapping circles in a Venn diagram. Instead, the data resolved into four groups with their own genetic and behavioral signatures.

“That level of distinctiveness was really surprising,” she said.

The work published in July in Nature Genetics detailed the four categories.

• Broadly affected: The smallest group — about 10 percent of participants — faced the steepest challenges, marked by developmental delays, difficulties with communication and social interaction, and repetitive behaviors that touched nearly every part of life.
• Mixed autism with developmental delay: Roughly 19 percent showed early developmental delays but few signs of anxiety, depression or disruptive behavior. Researchers call this group “mixed” because its members vary widely in how strongly they display social or repetitive behaviors.
• Moderate challenges: About a third of participants fell into this group, showing the hallmark traits of autism — social and communication differences and repetitive habits — but in subtler ways and without developmental delays.
• Social and/or behavioral: The largest group, around 37 percent, met early developmental milestones on time yet often grappled with other conditions later on, including ADHD, anxiety, depression or obsessive-compulsive disorder.

One of Sauerwald’s co-authors, Olga Troyanskaya, director of Princeton Precision Health, said she was stunned that in the social and/or behavioral group, individuals tended to be diagnosed later — 6 to 8 years of age — whereas most children exhibit noticeable symptoms before the age of 3 and are diagnosed at that time.

The new analysis study showed the delay may stem from genetic mutations that are present when a child is born — but activate later in life.

“To me, this was the most fascinating part,” Troyanskaya said. “We’ve always thought of autism as a disorder of fetal development — but that may be true only for some children.”

Read the full article here

2025 Autism Research Year in Review – Scientific Progress During a Challenging Year

From the Autism Science Foundation, December 30, 2025

2025 has been a monumentally challenging year for scientists in general and for autism researchers in particular, but despite drastic federal funding cuts, scientists continued to make progress toward understanding autism’s causes, improving diagnosis, and developing more effective treatments and supports for individuals with autism and their families. According to an Autism Science Foundation survey, about $80 million in autism funding was eliminated early this year as part of Department of Government Affairs (DOGE) cuts. This included approximately $80 million in autism research across the NSF, CDC, and NIH. In September, we received some encouraging news when the NIH announced $50 million in funding for 13 projects under the new Autism Data Science Initiative (ADSI), which will utilize U.S. datasets to investigate gene–environment interactions. These studies will examine a range of environmental factors, individually and in combination, and explore their roles in autism prevalence and causation.

Meanwhile, there was substantial progress toward understanding the biology of autism, including new insights into causes and effective supports, and important findings on biological subtyping.

Heterogeneity: Studies Confirm Autism Subtypes

One of the clearest scientific themes of 2025 was progress in understanding the differences of people with autism across the spectrum. Large-scale biological and behavioral analyses published this year identified reproducible subgroups within autism, including groups that differ in genetic backgrounds, biological features, changes in behavioral features over time, and co-occurring medical or behavioral profiles. These studies have the potential to shift the field away from treating autism as a single, uniform condition toward stratified, precision approaches and targeted supports.

Researchers used artificial intelligence paradigms to identify behavioral patterns and group individuals by shared features. They then compared biological characteristics across these groups to identify underlying mechanisms. This work began last year, and the findings reported in 2025 have been among the most impactful to date in defining autism subtypes. Using this approach, one study identified four subtypes, including one that closely aligns with profound autism (“broadly affected”), another characterized by higher rates of psychiatric conditions such as anxiety or ADHD (“moderately affected”), and two groups with milder challenges.¹ Another study found that age at diagnosis—early childhood versus adolescence—was the strongest predictor of subtype. Children diagnosed earlier tended to have delays in language, motor skills, and overall development, while those diagnosed later were more likely to have OCD, ADHD, or anxiety.² Those who are diagnosed later had co-morbid psychiatric issues that may have masked an autism diagnosis.

Genes are early determinants of biology and behavior, making it critical to understand how genetics contributes to these behavioral differences. These studies found that individuals with greater challenges tend to carry larger, rarer genetic variants, whereas those with milder or later-diagnosed autism show a higher burden of smaller, more common variants.^1,2 Certain rare variants, known as de novo variants and not inherited from either parent, are associated with more severe autism features.³

Looking beyond genetics to brain structure, additional studies showed that the severity of autism traits measured by the ADOS, both in individuals with autism and in individuals with ADHD, was a primary driver of differences in brain structure, rather than diagnostic category alone.⁴ The overlap in behavioral features, brain structure, and genetics across autism and many psychiatric disorders highlights the transdiagnostic nature of many neurodevelopmental traits^5,4 calling into question existing diagnostic boundaries. Many of the brain changes studied, including differences in cell density, were similar in individuals with ADHD and autism and more dependent on severity of symptoms.^4,6 Other studies demonstrated that autism-related brain differences are also present in individuals without an autism diagnosis who nonetheless show elevated autism traits.⁷ Taken together, these studies confirm that autism is not a single condition. As research progresses, a key priority will be to better understand subgroups within the broader non-profound autism population so that supports and services can be more effectively tailored.

Genetics and Environmental Factors

Individual functioning is influenced not only by genetics but also by environmental factors unique to each individual or family. These include chemical, nutritional, and contextual influences that warrant further study.⁸ While some environmental factors, like prenatal birth, may affect the probability of an autism diagnosis independent of genetic risk^9,10, they may also modify outcomes and capabilities in individuals who are already diagnosed.^11,12 Scientists increasingly agree that a broad range of environmental exposures should be studied in relation to developmental outcomes across diagnostic boundaries and along a continuum, rather than focusing narrowly on autism alone.^8,13

This year, studies also helped exonerate environmental factors that are not related to autism, including acetaminophen. In 2025, global health authorities and scientific reviews reaffirmed that there is no proven causal link between Tylenol (acetaminophen) use during pregnancy and autism. Organizations such as the World Health Organization and the American Academy of Pediatrics noted that existing studies show inconsistent associations and do not establish causation. These clarifications came amid political claims suggesting a connection, prompting experts and advocacy groups like ASF to emphasize that autism’s causes are complex and not attributable to anything parents did or did not do before, during, or after pregnancy.¹⁴

Sex Differences

Research in 2025 also advanced understanding of sex differences in autism, particularly the biological mechanisms that shape them. Large genomic datasets, built over decades, revealed why females are less frequently diagnosed than males. Females—especially those with cognitive and motor challenges—carry a higher burden of de novo variants than males, despite no difference in the specific genes affected.¹⁵ This pattern supports the concept of differential liability, in which females may have greater biological resilience to autism-related risk.

Additional findings suggest that sex differences arise from multiple mechanisms beyond a single female protective effect. Studies showed that female siblings of individuals with autism have language difficulties that are milder than those seen in autism but greater than those in unrelated peers.¹⁶ Other work found that although females are typically diagnosed later overall¹⁷, among children diagnosed before age two, females outnumber males.¹⁸ Females also have higher rates of co-occurring mental health conditions, which may complicate or delay diagnosis.¹⁸ These differences may reflect both biological variation and diagnostic bias, which could be addressed through clinician training and refinement of diagnostic instruments.¹⁹ For example, Black autistic girls are less likely to receive a diagnosis despite similar social responsiveness scores, underscoring the role of bias in diagnostic practices.²⁰

Other biological mechanisms underlying sex differences involve the X chromosome. Because females have two X chromosomes, understanding X-linked gene expression in both sexes is critical. Research in 2025 identified 33 X-linked variants consistently associated with autism.²¹ These variants are involved in brain development at different stages and show sex-specific expression patterns.²¹ Differences between X- and Y-linked genes may further contribute to sex differences in autism presentation and diagnosis.

Continued

New Hampshire State senators to file legislation addressing abuse and neglect in NH’s disability care system

By William Skipworth, The New Hampshire Bulletin, December 26, 2025

State Sen. David Rochefort, a Littleton Republican, said he and the state’s legislative staff are in the process of drafting a late bill aimed at addressing systemic abuse and neglect issues in New Hampshire intellectual and developmental disability care system.

In November, the Bulletin published a series of articles outlining abuse and neglect — sometimes fatal — committed by caretakers against people with disabilities. The stories also uncovered systemic failures of oversight and prevention that allowed the abuse and neglect to happen. State records obtained by the Bulletin show that from January 2023 through the first six months of 2025, 467 credible reports of abuse, neglect, and exploitation against people in the system were investigated by the state. The records also show 119 deaths occurred across the system during that time.

People with intellectual and developmental disabilities are legally entitled to care funded and overseen by the state. In New Hampshire, the Department of Health and Human Services’ Bureau of Developmental Services contracts with 10 private area agencies, each responsible for a region of the state, to coordinate the care.

While investigating these tragedies, the Bulletin spoke with several family members of people within this system who were abused or neglected, their attorneys, and advocates within the community. Rochefort, who is chairman of the Senate Health and Human Services Committee, said the series alarmed him and pushed him to look into the issue.

“I don’t think there’s any opposition to making change here,” Rochefort said. “I think there’s a real desire to do something now from everyone involved, even senators who are not on (the Health and Human Services Committee), who approached me on this.”

He said colleagues from both parties have expressed support for the effort.

“I think that you’re going to see action happen sooner rather than later,” Rochefort said. “Nobody wants to kick the can here.”

Rochefort said he and his colleagues are “still working out the finer details” of the bill, but it’ll seek to strengthen oversight and improve data sharing to allow officials to better identify issues.

“Data on these things would be shared automatically, rather than the way that it’s shared now,” he said. “And it would give the state a better way to either respond to complaints or take action if there’s an issue.”

He also said the bill changes the composition of the Incapacitated and Vulnerable Adults Fatality Review Committee — a panel established by state law to review concerning deaths and make recommendations on how the state can prevent similar deaths in the future — to allow for “better representation of the communities affected and the people that would actually be able to affect change.”

Continued

Follow up from a previous article:

Louisiana Medicaid extends contract with UnitedHealthcare

Staff Report, Houma Courier-Thibodaux Daily Comet, December 30, 2025

The Louisiana Department of Health will extend its Medicaid managed care contract with UnitedHealthcare for 90 days, continuing coverage through March 31, 2026.

Medicaid members currently enrolled with UnitedHealthcare will remain with the plan during the extension period and will not be reassigned to a new health plan on Jan. 1, 2026. No action is required by members at this time.

The extension does not affect Medicaid members who are enrolled in other managed care plans.

Continued

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[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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