January 16, 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.

Why we need to repeal the HCBS Settings Rule

Our friends at Together For Choice have been working tirelessly to repeal the HCBS Settings Rule. The Settings Rule was intended as a way to ensure community integration, but has actually done just the opposite, imposing rigid standards that take away good opportunities and leave people more isolated and subject to abuse and neglect. Please watch the YouTube video below to see an example of why this rule must be eliminated.

A repeal of the Settings Rule would allow individuals with disabilities and their families to have the same freedom of choice that the rest of us take for granted.

Click here to watch the video.

Help us to help families like yours

New Federal Medicaid Policies Compound State Budget Pressures   

By Riley Judd and Justin Theal, Pew Charitable Trusts, January 13, 2026

This is one in a series of five articles examining key debates that will unfold in the nation’s statehouses in the year ahead.

Medicaid—the health care provider for roughly 1 in 5 Americans and the largest single source of federal funding for state governments—is entering a period of major change that could reshape state budgets for years to come. State policymakers must now manage the budgetary and operational impacts of some of the most sweeping revisions in Medicaid’s 60-year history—changes enacted through H.R. 1, the federal budget reconciliation law passed last July—while also contending with substantial and growing underlying cost pressures.

 After multiple years of widespread budget surpluses, states now face slowing revenue growth and rising health care costs amid broader economic and fiscal uncertainties. Medicaid, a joint federal-state program, provides comprehensive coverage for health and long-term care to about 70 million low-income people as of September 2025. In fiscal year 2023, the program’s share of state budgets rose at the fastest annual rate in at least two decades as pandemic-era federal aid expired but enrollment remained elevated. Today, Medicaid continues to command a growing share of state resources. Because states have limited control over the program’s growth, new mandates or funding restrictions can quickly ripple through their budgets.

“What this bill does is compound pressures that were already there,” California Medicaid Director Tyler Sadwith said of the reconciliation law. “Rural hospitals are struggling, legislatures are facing budget shortfalls, and the standard tools [used to rein in costs]—cutting eligibility, rates, or benefits—are limited.”

The choices that lawmakers make in early 2026—how to implement the required federal changes, fund new requirements, and preserve access to care—will shape both their states’ fiscal outlooks and the program’s direction for years to come.

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To cut Medicaid budget, governor says Idaho could remove disability, dental services

By Kyle Pfannenstiel, Idao Capital Sun via East Idaho News, January 14, 2028

To balance the state’s budget, Idaho Gov. Brad Little’s plan says the state could cut Medicaid services for dental care and people with disabilities. 

As part of the governor’s recommendation for $22 million in extra Medicaid cuts, he says the state could remove Medicaid dental coverage for adults, and home and community-based services, which are meant to help people with developmental disabilities live outside of institutional settings. 

The governor’s budget chief, Lori Wolff, told the Idaho Legislature’s budget committee on Tuesday that following through on many of Little’s cut ideas would require a bill changing state policy.

“These decisions are difficult,” Wolff told the Joint Finance-Appropriations Committee, or JFAC. “And we are going to have to work closely together to decide how we do this.”

JFAC’s new co-chair, Rep. Josh Tanner, an Eagle Republican, seemed skeptical of the governor’s budget proposal. 

“Medicaid growth is crowding out every other priority,” Tanner wrote in a statement. “Instead of presenting real reforms, the Governor leaves behind a Medicaid budget hole based on unspecified cuts, shifting the toughest decisions to the Legislature.”

Idaho eyes Medicaid cuts after state tax cuts, and recent federal and state Medicaid cuts

Idaho is facing multimillion projected budget shortfalls — about $40 million this fiscal year, and more than $500 million next fiscal year — after years of state tax cuts. State officials are returning to talks of cutting Medicaid after passing a massive Medicaid cost-cutting bill last year, and after President Donald Trump’s “One Big Beautiful Bill Act” this summer deeply cut federal funds for Medicaid.

Years after the Legislature cut adult dental Medicaid coverage after the Great Recession, state lawmakers restored the benefit as projections showed dental coverage actually saved the state money.  After the federal “big beautiful bill” cut Medicaid this year, some Idahoans feared that optional Medicaid benefits like home and community-based services could face cuts, the Idaho Capital Sun reported. 

Idaho Voices for Children Policy Director Hillarie Matlock said the Legislature needs to let policies from last year’s Medicaid laws from the state and federal government play out.

The governor’s proposed cuts would “only drive up the state’s costs down the road,” she said. 

“If cost containment is the long-term goal, cutting any of these services is not the way to do it,” Matlock told the Idaho Capital Sun in an interview. “These services are essential to Idahoans with disabilities, children and seniors, and will only drive up costs down the road.” 

In a statement, the governor’s spokesperson Joan Vargas said the cut ideas “were considered to meet the state’s constitutional requirement for a balanced budget.”

“Adult dental coverage and home- and community-based services were included because they are optional Medicaid benefits under federal law, not mandated by the federal government,” she wrote. “While reductions have impacts, these options were considered to meet the state’s constitutional requirement for a balanced budget.”

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Virginia - When General Assembly gavels in, it has a disability services budget problem to solve

By Kate Seltzer, The Virginian-Pilot via Yahoo News, January 13, 2026 

Over the course of this legislative session, Virginia lawmakers might have to plug a budget hole for services for people with intellectual and developmental disabilities if they want to reduce the state’s federal oversight.

Last year, Virginia emerged from federal monitoring in place since 2012 when a federal judge ruled the state had made enough progress remedying years of mistreatment of people with developmental disabilities to exit a consent decree. But part of the deal was the state would reexamine how much it paid out in certain services for people with developmental disabilities that receive them through Medicaid waivers.

“The Commonwealth shall make its best efforts in the two legislative sessions immediately following publication of the results of the rate study to obtain from the General Assembly funding necessary to increase rates to those recommended by the study,” the agreement reads, noting that it should take into account inflation increases.

But not all of those services are fully funded in the two-year budget proposal introduced last month by Gov. Glenn Youngkin. When the General Assembly gavels into session Wednesday, among the tasks facing lawmakers will be how to fund disability services to meet the terms of the agreement.

Last week, the judge presiding over the case brought the state back into federal court in Richmond to ask why the budget plan did not include all the required funding.

Jeffrey Breit, an attorney representing the state, said the cost of the unfunded support services would exceed $1 billion in what already will be a tight budget year. He also noted the governor’s version of the budget bill is only a first draft — the legislature will spend the next 60 days figuring out how to balance it. Breit said members of the legislative money committees had been informed of the hole.

In October, the Department of Medical Assistance Services, which administers the state’s Medicaid program, conducted a rate study with the Department of Justice in accordance with the agreement. That study recommended raising the rates for all 11 buckets of developmental disability services provided by the Home and Community-Based Services Medicaid waivers for individuals with intellectual and developmental disabilities. Those buckets include services such as community engagement, independent living supports and therapy consultation. But, four of those groups — skilled nursing, private duty nursing, personal assistance, and respite care — are missing from the budget.

The high budget cost is in part because those providers work with a variety populations, not just people with disabilities, Breit said. Just 15% of that money would go to people with disabilities.

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West Virginia lawmakers hear dueling reports regarding future of Medicaid

By Steven Allen Adams, The Parkersburg News and Sentinel, January 13, 2026

A group representing West Virginia’s four largest managed care organizations presented lawmakers with a roadmap for reducing health care costs for Medicaid services. But another organization argued against any future expansion of managed care organizations.

Members of the Joint Standing Committee on Finance met Monday on the first day of two-day legislative interim meetings at the State Capitol Building prior to the start of the 2026 legislative session beginning at noon on Wednesday, Jan. 14.

Committee members heard from Ben Beakes, a lobbyist serving as executive director of the West Virginia Association of Health Plans, which represents four managed care organizations (MCOs) — Aetna, Highmark, The Health Plan, and Wellpoint.

Beakes’s report, titled “Medicaid Made Right — Policy Reform Recommendations for West Virginia’s Medicaid Program,” was put together by a team that spent the past nine months on this project.

The strategic framework focuses on price, process, and policy to improve efficiency and reduce costs for Medicaid, the federal and state health insurance program for low-income individuals and families. Key recommendations include integrating long-term support services into managed care, expanding telehealth access, and standardizing provider fee schedules to ensure transparency.

There [are] approximately 522,000 children and adults enrolled in West Virginia’s Medicaid program, with the program covering 46% of births, 45% of children, 24% of adults between the ages of 19 and 64, 51% of working-age adults with disabilities, 19% of Medicare beneficiaries, and 77% of nursing home residents. West Virginia receives roughly $4.5 billion in federal Medicaid funding.

President Donald Trump’s One Big Beautiful Bill Act made significant changes to Medicaid. The Kaiser Family Foundation estimates that Medicaid changes and changes made to the Affordable Care Act could cause West Virginia to lose as much as $1 billion in annual federal health care funding once fully phased in.

According to a Monday story from West Virginia Watch, the administration of Gov. Patrick Morrisey told state departments and agencies in August not to expect additional state funding to replace lost federal funding.

Specific recommendations from Beakes included expansion of telehealth services; reforming the fee schedules for reimbursement rates; reviewing the Certified Community Behavioral Health Clinic program, which is driving up costs by between $30 million and $40 million annually; and re-evaluating pharmacy benefits and a 2017 decision that carved out pharmacy benefits from managed care.

Another recommendation from Beakes was moving the long-term support services (LTSS) benefit from a fee-for-service model into managed care, aligning West Virginia with 25 other states to improve quality and manage high costs. According to AARP, LTSS quality in West Virginia was ranked 51st in the nation.

LTSS services include health and personal care services for people with disabilities or chronic conditions. Medicaid is the largest payer for LTSS services, which can include providing home health aides, adult day care, and institutional care.

“Twenty-five other states have already carved long-term support services into managed care,” Beakes said. “This is something that has been discussed. We would like to see the administration or this body take action to move that benefit into managed care so that managed care organizations can manage the full Medicaid program and not leave a large sector out there not being managed.”

However, Marty Wright, chief executive officer for the West Virginia Health Care Association, pushed back on the report by the West Virginia Association of Health Plans. His organization – which represents nursing homes, skilled nursing facilities, and assisted living facilities in the state – argued against expanding MCOs into long-term care services, contending that shifting Medicaid dollars to large insurance companies creates unnecessary bureaucratic red tape without improving health outcomes for vulnerable citizens.

“Managed care is absolutely the wrong decision to do for long-term care,” Wright said. “You think we have problems now, just look at the other 25 states that have been bragged about, and you’ll quickly find out, whoa, why in the world would we want to do that?”

Read the full article here

Nebraska - Developmental disability advocates fear proposed changes

By Aaron Bonderson, Nebraska Public Media, January 15, 2026

Parents and advocates of people with developmental disabilities are pushing for Nebraska’s Department of Health and Human Services to stop proposed limits on a waiver program. Meanwhile, the state said it’s taking the outpouring of comments under review and will respond to each of them.

The waiver program in question is called the Aged and Adult and Children with Disabilities Waiver, commonly called the Aged and Disabled Waiver.

According to a DHHS webpage, family caregivers for people with a high-level of need, also called skilled nursing facility level of care, couldn’t receive more than about $162,000 per year for waiver services under the proposal. Also, a department review would take place if service costs surpass roughly $139,000 annually.

Many people have submitted public comments about a proposed cap for the Aged and Disabled waiver on the number of billable hours per week for “live-in caregivers” to 40 hours and an additional 30-hour cap per week for other caregivers, DHHS said. That language can be found at the bottom of page 53 in the full proposal written by the department.

Susan Samuelson is a parent of a child with Duchenne muscular dystrophy and a member of a new advocacy organization called Nebraska Rare. Limits on family caregiving would push more people to seek agency care, which is understaffed, Samuelson said at a press conference Wednesday.

“Agencies cost two to three times more than what families are paid,” Samuelson said. “And I want to just say, families are only — nobody’s making bank. It’s $15 an hour, minimum wage.”

The Aged and Disabled waiver is a “lifeline” for families, Samuelson said. Nebraska Rare aims to advocate for families impacted by rare diseases, according to its website. Because care is a round-the-clock duty for people with the highest level of need, the most vulnerable families will be affected by the changes, she said.

“Forcing families to carry the burden of professional level care without fair pay, while limiting access to essential services, will not strengthen our system. It will break our system,” Samuelson said. “It will break families.”

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California - GOP Cuts Will Cripple Medicaid Enrollment, Warns CEO of Largest Public Health Plan

Bu Bernard J. Wolfson, KFF Health News, January 15, 2026

When the head of the nation’s largest publicly operated health plan worries about the looming federal cuts to Medicaid, it’s not just her job. It’s personal.

Martha Santana-Chin, the daughter of Mexican immigrants, grew up on Medi-Cal, California’s version of Medicaid, the government-run health care program for people with low incomes and disabilities. Today, she is CEO of L.A. Care, which runs by far the biggest Medi-Cal health plan, with more than 2.2 million enrollees, exceeding the Medicaid and Children’s Health Insurance Program enrollments in 41 states.

“If it weren’t for safety nets like the Medi-Cal program, I think, many people would be stuck in poverty without an ability to get out,” she said. “For me personally, not having to worry about health care allowed me to really focus on what I needed to focus on, which was my education.”

As she begins her second year steering L.A. Care, Santana-Chin is grappling with federal and state spending cuts that complicate her task of providing health care to the poor and medically vulnerable enrollees in Medicaid. The insurer also provides Affordable Care Act marketplace plans through Covered California.

Santana-Chin warns that the GOP’s One Big Beautiful Bill Act, enacted last year and also known as HR 1, could result in 650,000 enrollees falling off L.A. Care’s Medi-Cal rolls by the end of 2028. This will strain the plan’s finances as revenues decline. The insurer had revenues of $11.7 billion in the last fiscal year.

HR 1 is expected to cut more than $900 billion from Medicaid over the next 10 years — including $30 billion or more in California, according to the Department of Health Care Services, which runs Medi-Cal.

Like other states facing big deficits, California has reduced its Medicaid spending through such steps as freezing new enrollments for immigrants without legal status and reintroducing an asset limit. And that’s before the state reckons with the spending cuts that likely will be required by the withdrawal of so many federal dollars under HR 1.

Santana-Chin oversaw Medi-Cal and Medicare operations for the for-profit insurer Health Net before taking the helm of L.A. Care in January 2025, nearly three years after state regulators fined L.A. Care $55 million over violations they said compromised the health and safety of its members. L.A. Care paid $27 million in penalties to the state and agreed to contribute $28 million to community health projects.

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Workgroup delivers review of HCBS quality measures set   

By Kimberly Bonvissuto, McKnight's, January 16, 2026

A federal workgroup tasked with reviewing national quality measures for Medicaid home- and community-based services has delivered its biennial report, calling for the removal of three measures and the addition of four new ones.

The quality measures, first introduced in 2022, were developed by the Centers for Medicare & Medicaid Services to strengthen quality, transparency and accountability in Medicaid-funded HCBS. Senior living provider groups at the time said that the introduction of the then-voluntary measures came amid “longstanding, chronic underfunding” of HCBS that led to provider workforce shortages. The financial issue needed to be addressed, the groups said, noting, however, that they supported the quality improvement effort in general.

CMS proposed making some quality measures mandatory in 2023. Use of the measures currently is optional but will be mandatory beginning in 2028.

Mathematica recently led a 25-member workgroup of individuals representing state Medicaid programs, managed care plans, professional associations, universities, hospitals, healthcare companies and other organizations. The group reviewed 15 measures, releasing a final report last week that recommended the removal of three measures and the addition of four measures for the 2028 HCBS quality measure set.

HCBS rules

Quality measures related to community integration and HCBS settings requirements, as defined by the HCBS Settings Final Rule, established requirements for the qualities of settings in which Medicaid HCBS are provided. Senior living organizations have been pushing to have the HCBS settings final rule repealed or revised. 

Red the full article here

Medicaid Long-Term Services and Supports Data 

Issue Brief: Understanding Gaps and Opportunities to Advance Research and Policy

ByJulia Hinckley, JD, U Penn Leonard Davis Institute of Health Economics, January 14, 2026

Executive Summary

Federal and state spending on Medicaid Long-term services and support (LTSS) exceeds $200 billion each year, but data about these services across and within states are fragmented and inconsistent, hampering evaluation. Understanding how to use existing data sources and taking steps to improve them are necessary for strengthening the evidence base and informing future LTSS policymaking. 

Introduction

Long-term services and supports (LTSS) include a broad range of medical, personal, and social care services that assist individuals who have difficulty caring for themselves due to age, illness, or disability. These services help people live more independently and include care delivered in institutional settings, such as nursing homes and intermediate care facilities for individuals with intellectual disabilities (ICF-IIDs), as well as care provided in home and community settings. 

Medicaid finances the majority LTSS in the United States, accounting for approximately one-third of all Medicaid spending and a substantial portion of state budgets. Annual spending on LTSS exceeds $200 billion. Following the passage of H.R.1, the One Big Beautiful Bill Act, Medicaid programs face additional budget pressures. States will need to make choices about how to stretch Medicaid dollars for long-term services and supports (LTSS). However, the evidence base guiding LTSS policy remains limited due to the absence of comprehensive, comparable longitudinal data. 

States administer LTSS programs under multiple provisions of the Medicaid statute which creates a set of complex and heterogeneous rules even within a single state. Additionally, states increasingly deliver both community-based and institutional services through managed care arrangements, where it can be hard to track the services delivered or the cost for service bundles. High-quality, longitudinal data on spending, utilization, participation, and outcomes are essential for evaluating LTSS programs, but existing data sources are fragmented, inconsistent, and often difficult to interpret. This brief is based on a white paper that investigated the major LTSS data sources, assessed their limitations, and identified opportunities to strengthen the data landscape to improve the evidence base.

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Download a pdf here

As People With Disabilities Live Longer, Facilities Rework Services

By James Walsh, The Minnesota Star Tribune via Disability Scoop, January 13, 2026

Mickey Wesley was 11 when he moved into the boys dormitory on the Hammer campus in 1978 in Wayzata. Born with autism and Down syndrome, young Mickey loved going to church, bowling and fishing, his sister said.

Now 58, Mickey’s world has gotten much smaller. He needs help with bathing, toileting and dressing. He now needs round-the-clock care, said his sister Julie Wesley-Wong.

“What he needed when he was younger was staff to be much more like camp counselors,” she said.

And now?

People like her brother “need people who know them, can anticipate their needs, notice small changes in their health and well-being,” she said. “And provide the extra care they will need as they grow older.”

More [individuals] with developmental and intellectual disabilities are aging and need more involved care, leaving more to soon need group homes and other residential facilities as their families, who often care for them, also age. Yet, facilities are facing stagnant state and federal funding and a national crisis of staffing shortages.

While the majority of people with developmental or intellectual disabilities are cared for by their families, the average life span for people with those disabilities has increased from 66 years in 1950 to 78 years in 2007. And it keeps rising, thanks to medical advances and improved living conditions, said Tamar Heller, who directs the Rehabilitation Research and Training Center on Aging with Developmental Disabilities at the University of Illinois at Chicago.

The number of people with disabilities over the age of 60 is projected to nearly double from more than 650,000 in 2000 to 1.2 million by 2030, she said.

Yet with more than 25% of family care providers older than 60, those numbers indicate a seismic shift in caregiving is coming, Heller said, and more of them will soon need group homes and other residential facilities.

“There are already waiting lists (for facilities),” she said. “And if more families can’t do it, they’ll need help.”

The demographic trends illuminate an emerging need for facility staffing in the coming years, Heller said.

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States Decline To Drop Lawsuit Threatening Disability Rights Protections

By Michelle Diament, Disability Scoop, January 13, 2026

As federal officials look to clarify recent rules designed to bar disability discrimination in health care, a long-simmering lawsuit threatens to invalidate them altogether.

The U.S. Department of Health and Human Services wants to alter a 2024 update to regulations related to Section 504 of the Rehabilitation Act. The rule, finalized by the Biden administration, prohibits health care providers from making treatment decisions based on biases about disabilities and mandates increased availability of accessible medical equipment, among other changes.

HHS is seeking to tweak the regulations to specify that gender dysphoria does not qualify as a disability under the rule. The agency said it is responding to “significant confusion” created by language in the rule’s preamble that prompted a lawsuit from Texas and 16 other states.

[A]dvocates are concerned that Texas and the other states have not dropped their lawsuit, which could upend the Section 504 regulations as a whole.

“Until the states dismiss their lawsuit, it continues to be a threat to the 2024 update to the Section 504 regulations since their complaint seeks to enjoin the entirety of the regulations,” said Alison Barkoff, a professor at George Washington University who led HHS’ Administration on Community Living under the Biden administration.

The states’ lawsuit generated significant backlash last year because in addition to the gender dysphoria concerns, it sought to completely invalidate Section 504. The states ultimately backed off the broader constitutional claim about the legality of Section 504 and the lawsuit has been paused for months.

In a status report to the U.S. District Court for the Northern District of Texas last week, the states requested that the case remain paused while HHS considers the proposed rule.

Meanwhile, advocates say that the litigation continues to cloud the disability protections provided by the updated regulations.

Read the full article here

Minnesota fraud: State officials say federal Medicaid cuts would hurt the most vulnerable

By Kilat Fitzgerald, Fox 9 News, January 14, 2026

Minnesota department heads who rely on federal funding for critical services that assist seniors, children, and people with disabilities, say that the loss of federal funds would cause signigicangt harm to vulnerable members of the state's population.

This comes after President Donald Trump threatened to cut federal funds to Minnesota and other sanctuary states but did not specify which specific Medicaid funds would be targeted.

President Trump announced massive funding cuts to sanctuary states that he says will start on Feb. 1.

"Starting February 1, we're not makking any payments to sanctuary cities or states having sanctuary cities because they do everything possible to protect criminals at the expense of American Citizens," Trump said.

Minnesota leaders say Medicaid cuts will lead to deaths.

Deputy Commissioner of the Department of Human Services and State Medicaid Director John Connolly saiid state officials worked with Centers for Medicare and Medicaid Services to address the fraud that was running rampant in Minnesota programs.

"We had been working on this issue, program integrity, for well over a year, and many of the suggested changes had either been implemented or were in process," Connolly said. "And since October 2024, e had been frequently working with CMS staff to harden our processes, minimize risdk,, and prevent fraud. As we were implementing their suggestions over the month, CMS staff did not indicate that our work was insufficient."

Andrea Hanek, and executive board member for SEUIU Healthcare and a Duluth resident said, "They hate Minnesota so much, they're willing to let our disabled and our elderly loved ones die to punish us."

Read the full article here

Massachusetts DDS withholds information on investigation of its data on the census of state-operated group homes

By David Kassel, The COFAR Blog, January 16, 2026

In the wake of questions raised by COFAR, the Department of Developmental Services (DDS) appears to have conducted an internal investigation of its apparently contradictory data on the total number of residents in its state-operated group homes.

The Department, however, has declined to provide any records of that investigation to us, citing attorney-client privilege. An attorney for the Department, meanwhile, has not responded to a query I sent her on the matter on January 5.

As we reported last fall, a new set of census data provided by DDS in September has produced confusion over whether the total number of residents, or census, in state-operated group homes has been rising or falling. Data provided by DDS in previous years consistently showed the total census of the homes had been steadily falling.

However, the new data set from DDS in September indicates that the census of the state-operated homes actually rose during the same fiscal years DDS had previously said it was falling – 2020 through 2023. Moreover, the new data show the census continued to rise until as recently as last year. (See graph below depicting the two contradictory sets of data from DDS.)

The DDS state-operated group home network is far smaller than the privatized group home system, which is managed by DDS-funded corporate providers. However, we consider the state-operated homes to be critically important in maintaining the fabric of care in the DDS system.

DDS spends about $350 million a year in operating its state-run group homes, compared with more than $2 billion a year on the provider-operated homes. We are concerned that the Healey administration is allowing the state-operated group home network to die by attrition.

Due to the apparent discrepancy in the data, we filed a Public Records Law request with DDS on November 13 for documents pertaining to apparent changes made by the Department to its census data for state-operated group homes between Fiscal Years 2020 and 2023.

DDS responded to us on December 29, indicating that they had located 74 internal emails and email attachments that were responsive to our records request. But an assistant DDS general counsel stated that, “All responsive records, including emails and email attachments, are withheld on the basis of the attorney-client privilege.” Each email involved a communication between a DDS attorney and another DDS official or attorney.

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Arkansas - Jonesboro Human Development Center breaks ground on new wellness center 

By Bryant Kwilecki, KAIT-8 News, January 15, 2026

The Jonesboro Human Development Center broke ground on a new wellness center aimed at providing comprehensive medical care for adults with developmental and intellectual disabilities.

The state-of-the-art facility will house medical professionals in one location, offering clinic space and office space for various services.

“What this wellness center is going to provide is an opportunity for clients to come in to one new place, state of the art where all these medical professionals are housed and so there’s going to be great clinic space, office space,” said Jennifer Brezee, DHS Director of Developmental Disabilities Services.

The new center will allow clients to receive medical treatment and care closer to home, reducing travel time for appointments.

“It’s really important so that our residents aren’t having to travel as far and go way off campus to see their doctors and see their specialists and speech therapies, and they are able to stay close to home,” Brezee said.

The facility will be one of the top centers in the state and will provide all needed services under one roof.

Read the article here

Barbie Debuts Doll With Autism

By Shaun Heasley, Disability Scoop, January 12, 2026

For the first time, a Barbie doll with features designed to account for the ways in which individuals with autism experience the world is hitting the market.

Mattel, the maker of the iconic toy, said the doll has a new face sculpt and an eye gaze that’s shifted to the side given that some people with autism avoid direct eye contact. In addition, the so-called “Autistic Barbie” will have articulating elbows and wrists to allow for stimming, hand flapping and other gestures, which are common among those on the spectrum.

The new doll comes with a fidget spinner, pink noise-cancelling headphones and a tablet displaying a symbol-based augmentative and alternative communication app. Autistic Barbie is outfitted with a loose-fitting dress to account for sensory-sensitivity and has flat Mary Jane shoes to promote stability, Mattel said.

The company spent more than 18 months working with the Autistic Self Advocacy Network to create the new Barbie.

“It is so important for young autistic people to see authentic, joyful representations of themselves, and that’s exactly what this doll is,” said Colin Killick, executive director of the Autistic Self Advocacy Network. “Partnering with Barbie allowed us to share insights and guidance throughout the design process to ensure the doll fully represents and celebrates the autistic community, including the tools that help us be independent.”

The Barbie with autism is part of the Barbie Fashionistas collection, a lineup aimed at promoting inclusivity that offers over 175 options featuring various skin tones, eye colors, hair colors and textures, body types, disabilities and fashions.

Mattel already offers Barbie dolls with Down syndrome, blindness, hearing aids, wheelchairs, prosthetic legs and more.

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Autistic Barbie: Erasure Repackaged as Representation

By Jackie Kancir, National Council on Severe Autism, January 12, 2026

This is not a story about a doll. This is about how autism has been rebranded, monetized, and flattened into something safe for public consumption while the people with the highest needs remain excluded from public life, public policy, and public concern.

According to the most recent CDC ADDM data, among eight-year-old children identified with autism who had IQ data available, 39.6% had co-occurring intellectual disability (ID), defined as an IQ of 70 or below. An additional 24.2% fell in the borderline range, with IQ scores between 71 and 85. Only 36.1% had IQs above 85 (CDC ADDM Community Report, 2025, p. 11).

Therefore, nearly two-thirds of autistic children have cognitive impairment. These individuals do not represent an edge case. They constitute the majority of the autistic population.

Nevertheless, the version of autism presented to the public through toys, marketing, and media overwhelmingly reflects the smallest and most advantaged segment. This portrayal is tech savvy, functionally typical, cognitively gifted, emotionally legible, and socially palatable. It reassures the public that autism is manageable, tidy, and compatible with existing social norms.

That marketed narrative aligns neatly with approximately 36 percent of autistic people. It excludes the remaining 64 percent.

For individuals with intellectual disability or borderline ID, autism is not simply a different way of being. It is a lifelong condition that often requires constant supervision, comprehensive supports, and sustained public investment. Many will never live independently. Many cannot reliably self-advocate, even with assistive communication technology. Their lives are shaped not by identity language but by access to care, staffing, housing, and safety.

The 2025 national caregiver survey by NCSA found that 80% of those with severe forms of autism have been denied access to disability services explicitly because they were deemed “too severe.” Only 21% have reliable direct support staffing. Housing instability is widespread, and long-term planning remains a crisis for families aging alongside their disabled children.

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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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