January 9, 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.

We are saddened to learn of the passing of our own Marilyn Straw earlier this week. Marilyn was one of the earliest members of VOR, was a member of the Board of Directors for many years, and served as our President from 1999 - 2000.

Marilyn was a fierce advocate for her son Bob, both in Iowa and in Washington, D.C. We knew her as a kind and loving soul, who brought warmth and a quick wit to her advocacy.

We miss you, Marilyn. Your light will continue to shine.

(Sybil Finken and Marilyn Straw, advocating with VOR in D.C.)

~~~~~~~~~~

in loving memory

MARILYN JOY STRAW

May 11, 1932 – Jan 4, 2026

Marilyn passed peacefully on Sunday, January 4 at Deerfield Senior Living in Urbandale, Iowa. Marilyn is survived by her husband, Bill, and three children, Bill Jr, Mike and Tom, and grandson, Billy. She is preceded in death (2021) by her son Bob, who lived his life with intellectual disabilities.

Marilyn spent her adult life advocating in Iowa, and nationally, on behalf of parents, families, and those individuals living with intellectual disabilities. She was recognized in Iowa by Governor Branstad, and Governor Vilsack, for her lifelong passion of supporting individuals living with intellectual disabilities.

Marilyn volunteered her time at Woodward State Hospital, where her son Bob lived as a teenager, and served on their human rights committee. Marilyn also volunteered with LINK Associates, The ARC, and the VOR, where she served as National President. All organizations devoted to bettering the lives of those individuals living with intellectual disabilities.

Born in Chicago, Marilyn attended Northwestern University, after which she become a flight attendant. Bill took a job in Des Moines in 1971, moving the family, and at which time, Marilyn became an active member of the church.

The family will hold a memorial service for Marilyn on Saturday January 17, at 2 pm (Central Standard Time)

2pm - Service with Pastor Ortiz

2:30 to 4 pm – Visitation

St. Mark Lutheran Church 1105 Grand Ave. West Des Moines, IA

For those unable to attend in person, there wil be a live stream:

www.stmarkwdm.org/church-online 

Help us to help families like yours

VOR responds to National Council on Disability's Request for Information on

Disability Clinical Care

The National Council on Disability posted a request for information (RFI) regarding the state of clinical care for people with disabilities. VOR's Jill Clayton authored a thorough and thoughtful response.

Please read!

Click here to download the NCD's request and VOR's response

National Core Indicators releases

State of the Workforce for IDD 2024 Report

Announcement courtesy of National Association of State Directors of Developmental Disability Services, January 8, 2026

The NCI-IDD SoTW is the most comprehensive data on the Direct Support Professional (DSP) workforce providing direct services to adults with intellectual and developmental disabilities (IDD). We remain committed to partnering with states, agencies, and people with IDD to use these data to strengthen Medicaid-funded services and supports and ensure DSPs are valued for their essential role supporting people with IDD.

A few report highlights:

In 2024, we collected data from 3,936 provider agencies representing 344,179 DSPs in 26 states and the District of Columbia. The data for 2024 suggest some positive trends for the state of the IDD DSP workforce. 

For example:

• Across the nation, the median hourly wage for DSPs is $18.39 which is more than a dollar increase from the median hourly wage of $17.20 in 2023. 
• The weighted average turnover ratio was 37%, with nearly two in three DSPs who left their employers (64%) having been with their agency for less than one year.
• On average, 26% of agencies report they turned away or stopped accepting referrals due to staffing issues, down from 38% in 2023.

State DD agencies have worked tirelessly to address the ongoing workforce shortages for DSPs, and these data suggest slight but hopeful trends in key indicators. Altogether, NCI-IDD SoTW provide valuable insights about opportunities to enhance retention of DSPs and improve the continuity of services.

Download the full report here

Access the 2024 NCI State of the Workforce Survey Data-At-A-Glance

KFF Releases 3 reports on Medicaid Home Care for Home- and Community-Based Services:

Long-standing workforce challenges in Medicaid home care (also known as home- and community-based services or HCBS) impact care for the over 5 million people who use these services. Shortages and high turnover rates among the direct care workforce reflect demanding work and low wages, particularly among home care workers (who are direct care workers that provide HCBS). This issue brief describes states’ ongoing efforts to respond to shortages of home care workers and how they pay these workers, finding that increased payment rates are a key component of states’ efforts to address workforce shortages.

Such shortages could increase as states will face tough choices about how to absorb Medicaid cuts stemming from the 2025 reconciliation law, which is estimated to reduce federal Medicaid spending by $911 billion over the next decade. When faced with fiscal pressures in the past, states have responded with restrictions on home care, and as a result of the reconciliation law, states may again face significant pressures to cut Medicaid payment rates, offer fewer covered benefits, or restrict eligibility. The Medicaid cuts could also affect access to health coverage among home care workers because over one-in-three workers in home care settings are enrolled in Medicaid. Reduced access to health coverage among the workforce could exacerbate other challenges.

Workforce challenges may also worsen in future years because of changes in immigration policy. Nearly one-in-three home care workers are immigrants, and the Trump Administration’s intensified immigration enforcement and restrictive policies are deepening anxiety and fear among immigrants of all statuses. KFF survey data finds that 13% of immigrants have avoided going to work since January 2025 because of concerns about drawing attention to someone’s immigration status, a number which rises to 40% among people who are likely to be undocumented immigrants. Fewer immigrants overall and potentially lower rates of employment among immigrants could reduce the size of the home care workforce. With more limited immigration, there will be fewer workers overall to care for an aging population.

Continued in the articles below:

Payment Rates for Medicaid Home Care Ahead of the 2025 Reconciliation Law

By Alice Burns, Maiss Mohamed, and Molly O'Malley Watts, KFF, January 5, 2026

Read the article here



Medicaid Home Care (HCBS) in 2025

By Maiss Mohamed, Alice Burns, and Molly O'Malley Watts, KFF, January 5, 2026

Read the article here

Medicaid’s Home Care Support for Family Caregivers in 2025

By Alice Burns, Maiss Mohamed, and Molly O'Malley Watts, KFF, January 5, 2026

Read the article here

Medicaid Changes Could Limit Access For People With Disabilities, Advocates Warn

By Michelle Diament, Disability Scoop, January 5, 2026

As federal officials begin to outline more stringent Medicaid eligibility rules, worries are running high about what the changes will mean for people with disabilities.

Congress approved sweeping legislation last summer that includes nearly $1 trillion in Medicaid cuts. Central to the plan are so-called “community engagement” requirements stipulating that many Medicaid beneficiaries must prove that they are working, volunteering or going to school in order to qualify for coverage.

Now states are tasked with establishing systems to determine whether beneficiaries meet the new standards and there are big questions about how they will do so.

The Centers for Medicare and Medicaid Services issued initial guidance in December. It specifically exempts individuals who are “medically frail” or who have “special medical needs” including those with physical, intellectual or developmental disabilities from the new rules. Parents, guardians, caretaker relatives and family caregivers of those with disabilities are also exempt.

“I am very pleased that CMS is providing clear direction to states using breakthrough Medicaid community engagement tools that restore the dignity of work and lift people out of poverty, while supporting the sustainability of Medicaid for the most vulnerable,” said U.S. Secretary of Health and Human Services Robert F. Kennedy, Jr.

However, the informational bulletin did little to quell concerns that people with disabilities could be adversely affected.

“The guidance provides no additional detail and simply re-states what is in the statute,” said Michael Lewis, vice president of policy at the American Association of People with Disabilities. “Congress promised that the ‘community engagement’ requirements would only cause coverage losses among those who can work but choose not to. People with disabilities and chronic health conditions that limit their ability to find and keep work need significantly stronger assurances that they will not lose coverage when these requirements start.”

The concerns lie in the details, advocates say. Many people with disabilities qualify for Medicaid because they already receive Supplemental Security Income or benefit from another disability program, but data show that there is a significant percentage who access coverage through Medicaid expansion, which is the target of the new federal requirements. Regardless, any added steps to prove eligibility could inhibit access for people who should be eligible.

Continued

Ed Department Pushing Ahead With Plan To Offload Special Education

By Michelle Diament, Disability Scoop, January 9, 2026

With a pair of new hires and recent comments, advocates say the Trump administration appears to be actively laying the groundwork to transfer special education out of the U.S. Department of Education.

Secretary of Education Linda McMahon told a group of disability advocates she met with last month that she’s committed to proceeding with plans to move special education oversight to another federal agency.

“The secretary was cordial but very clear that she intends to move all of the department offices to other agencies and close the department. She indicated that it had not been determined whether the Office of Special Education Programs would be moved to the Department of Labor or the Department of Health and Human Services,” said Stephanie Smith Lee, co-director of policy and advocacy at the National Down Syndrome Congress, who served as director of the Education Department’s Office of Special Education Programs under President George W. Bush.

Lee and advocates from several other disability organizations who are part of the Consortium for Constituents with Disabilities’ Education Taskforce participated in the meeting with McMahon and Assistant Secretary for the Office for Civil Rights Kimberly Richey.

McMahon told the group that the Office of Special Education Programs, which administers funding and oversees implementation of the Individuals with Disabilities Education Act, will be moved as a whole, but that no agreement had been signed and she did not provide any timeline, according to Jacqueline Rodriguez, CEO of the National Center for Learning Disabilities, who was also present. McMahon did not share details about plans for the Rehabilitation Services Administration, which handles vocational rehabilitation, Rodriguez said.

Now, however, there are signs that a move could be taking shape, advocates say.

Earlier this week, the Administration for Community Living at HHS announced that it has hired Diana Díaz-Harrison, who had been serving as deputy assistant secretary of the Education Department’s Office of Special Education and Rehabilitative Services, or OSERS, as well as Rebecca Hines, who had been an associate professor of special education at the University of Central Florida. Rebecca Hines’ sister Cheryl Hines is married to HHS Secretary Robert F. Kennedy Jr.

“Those moves seemed to indicate that programs for students with disabilities will move to HHS,” said Denise Marshall, CEO of the Council of Parent Attorneys and Advocates, or COPAA, a nonprofit that advocates for the rights of students with disabilities and their families.

Officials with the Education Department declined to comment on the current status of special education. HHS also did not respond to questions about whether an agreement is in the works to take on the program.

Continued

I Learned to Walk Because of IDEA. Millions of Children Still Depend on It

By Victoria Mejicanos, TIME Magazine, January 7, 2026

 remember the first time I felt like I couldn’t control my own body. I was in preschool, receiving adaptive physical education for the first time in East Los Angeles with my very own, one-on-one P.E teacher. He was teaching me how to walk, sternly saying “heel-toe, heel-toe” and applying pressure on the corresponding body parts. 

I was frustrated and confused. I knew what my heel was, I knew what my toe was. Why wasn’t anything working? Why was this man touching me, and why was he so annoyed? Didn’t he understand how hard this was for me? 

That day marked the beginning of my awareness that something was “wrong” with me, that needed to be corrected. I later learned that what I struggled with had a name: cerebral palsy.

Without that overworked P.E. teacher, whom I loathed seeing each session, I would not be able to walk properly today. Without the therapists who came after him, I would never have learned how to throw and catch a ball, how to skip, how to run in a straight line, and, most importantly, I wouldn’t have learned how to fall and get back up. 

These adaptive P.E. teachers and other occupational therapists, however imperfect, were a lifeline. They were provided to me through individualized education programs covered by a special education law, the Individuals with Disabilities Education Act (IDEA). IDEA mandates that disabled students be included in public schools and receive a free and appropriate education. It ensures that disabled students have the support to help them thrive and reach their full potential. 

Now, half a century since the IDEA Act was passed, the future of its programs and of special education as a whole are unclear. The Trump administration is working to dismantle the Department of Education and move IDEA to the Department of Health and Human Services, which lacks experience protecting the civil rights of students with disabilities. President Trump’s actions have already led to a nationwide collapse in resolutions for disability rights cases.

According to reporting by NPR last month, the U.S. Education Department’s Office for Civil Rights (OCR), which handles cases of discrimination against disabled students, has only resolved 73 cases involving alleged disability discrimination this year. In 2024, OCR resolved 390 cases. And in 2017, the year Trump took office his first term, OCR reached agreements in more than 1,000 cases. 

Why is this happening? During the government shutdown, President Trump gutted the office responsible for implementing IDEA. And although the deal to re-open the federal government required the reinstatement of fired workers, that provision expires after January 30. Consequently, the Office of Special Education and Rehabilitative Services is in turmoil. NPR described the office as the “central nervous system” for programs that support students with disabilities. The office is also responsible for ensuring that states are complying with IDEA, and distributes roughly $15 billion in funds for its programs. 

So, what happens to the 7.5 million students, or 15 percent of all public students nationwide, who rely on this office to ensure their rights are upheld? If the office loses its staff next year, the effects would be far-reaching. According to the Department of Education, prior to this landmark legislation in 1975, children like me were denied access to education. Many states also had laws excluding students who were deaf, blind, emotionally disturbed, or had an intellectual disability.

If it hadn’t been for individualized education programs tied to IDEA, my oldest brother, who is severely mentally impaired, would never have known the thrill of a high school football game. My second youngest brother, who has autism, would never have learned to talk. I may have been confined to a wheelchair and sent to a special school. An IEP gives students with disabilities specific and measurable goals, and support to work toward them. 

Continued

New Jersey - Are Group Home Executives Making Too Much?

By Susan K. Livio, The Bergen Record via Disability Scoop, January 8, 2026

The business of serving adults with autism and other developmental disabilities in New Jersey has boomed since Gov. Phil Murphy took office eight years ago, with the cost to taxpayers skyrocketing from $1.1 billion to $3.7 billion.

This unbridled growth helped fuel a dramatic rise in the salaries of top executives at some of the biggest nonprofit group home operators, an NJ Advance Media analysis has found.

The increases have alarmed state Human Services Commissioner Sarah Adelman, who told NJ Advance Media she is pushing for salary limits on top officials and a boost in pay for workers who tend to New Jersey’s most vulnerable citizens and now make about $21 an hour.

“It’s important there is an honest dialogue about executive compensation,” Adelman said. “As we’ve been able to significantly increase Medicaid revenue to providers, we want to make sure that it’s being used as intended — on increasing wages for frontline workers and ensuring high quality services for residents.”

The NJ Advance Media review of taxpayer-funded executive salaries of the nonprofits with the most group home clients in New Jersey, as reported to the IRS, showed big raises from 2018 to 2023, the most recent available data.

• Two co-executive directors at CaringHouse Projects and its related company Caring, Inc. in Atlantic City more than doubled their pay: Joseph Dougherty, in charge of operations, earned $558,774 in 2023, up from $247,199 in 2018. Brian Curran, in charge of finance, saw his compensation grow from $247,199 to $502,577. The state paid the company $57.4 million last year to operate group homes for 285 people in south Jersey.

• Robert Stack, president and CEO of Community Options, a Princeton-based national nonprofit, earned $2.37 million in 2023 — nearly tripling his 2018 compensation of $838,942, making him the highest paid CEO among group home providers in New Jersey. The company was paid $77 million to serve 426 people in group homes in New Jersey last year, according to the state.

• Michael Haggerty, the CEO of Allies, a nonprofit in Hamilton, who is also an executive with related companies Woods and Legacy Health, earned $408,812 in 2023 — nearly double what his predecessor made in 2018, according to tax records. The center, which was paid $73.1 million to serve 336 group home clients in 2024, was cited by the department in the last year for three or more substantiated serious allegations of abuse, neglect and exploitation.

• Charles McLister, president and CEO of Elwyn N.J., earned $684,747 in 2023, a 31% hike from $524,630 in 2018, when he was listed in tax records as president. Elwyn, based in Pennsylvania, was paid $38 million serving 205 clients in New Jersey last year. The state Attorney General’s Office recently charged five managers and front-line workers with neglect and one with assault for twice allowing a patient to remain on the floor for several hours after falls. Human Services also cited Elwyn for at least three substantiated “serious allegations of abuse, neglect and exploitation.”

The pay in New Jersey is often significantly higher than what top executives earn in New York, which experts say is a fair comparison. This was true even for New Jersey group home executives running smaller operations with less revenue.

Seven leaders of nonprofit group homes in New Jersey earned more than $500,000, compared with four in New York. In some cases, New Jersey CEOs whose group homes had fewer clients earned at least $50,000 more than leaders of operations in New York.

CEO pay for larger group home operators across the nation increased about 3.8% from 2019 to 2020, according to Candid, a company that produces a database of millions of U.S. nonprofits.

None of the nonprofit operators responded to NJ Advance Media’s questions about executive compensation and how clients’ funds are spent. There was no salary information available for two of the top 10 group home operators because they are for-profit companies that are not required to disclose information to the IRS.

Paul Aronsohn, who leads the Office of the Ombudsman for Individuals with Intellectual and Developmental Disabilities and Their Families, has sharply questioned executive compensation, especially in the wake of how dramatically the taxpayer-funded system has exploded.

He said there’s no evidence the group homes are doing a much better job serving the 29,000 people living in group homes, supervised apartments or in their family homes with state-funded services. Complaints to his office have tripled over the past eight years, he said.

“Some agencies clearly do all they can to put the money in the right places to support the individuals that live in their homes,” Aronsohn told NJ Advance Media. “Some agencies don’t, and there’s nothing to compel them to do so.”

“I don’t know where the money is going,” he said.

Donna Icovino, a Bucks County, Pa. resident and a decades-long advocate who has helped families navigate the government bureaucracy for disability services, gasped when she saw the salaries executives are making, noting that front-line workers who care for residents, including her 40-year old son Michael, “are working two and three jobs to support their own families.”

“When parents speak to me about not being able to obtain for their adult children what they need, I am left wondering … how is it possible to justify this persistent lack of quality services despite sufficient funding?”

Direct support professionals, the people who feed, bathe, and spend time with group home residents, saw hourly wages rise from $12 to $21 an hour in the past eight years, Adelman said.

But she acknowledged these wages are still far too low to reliably recruit and retain the workers who are the backbone of the system. Top state officials and advocates agree low wages add to staffing shortages at many centers.

“We don’t want this to be minimum-wage work. I hope this (goal) continues with the next administration,” Adelman said.

Read the full article in Disability Scoop here

Read the article in The Bergen Record (NJ.com) here

Virginia developmental disability community fears funding cuts in 2026

By Brad Kutner, Radio IQ - WVTF, January 6, 2025

Virginia disability advocates will ask for additional funds they say Governor Glenn Youngkin failed to include in his outgoing budget. And a federal judge may affirm that need at a hearing Wednesday. But the request comes as state funds are expected to be tight.

In 2024 record funds were approved to support Virginia’s developmentally disabled community, but changes to federal funding and an agreement with the Department of Justice may require more state funds to be spent in 2026.

Tonya Milling is with the Arc of Virginia. She said Governor Glenn Youngkin failed to include funds for rate increases for some services, including personal care, nursing and respite.

“Services that make life possible, community life possible, for people with disabilities who have the highest, most complex support needs.”

A long-running agreement with the DOJ following decades of the Commonwealth’s poor treatment of people with disabilities made concrete demands in these areas last year. A federal judge in Richmond is set to hear more from Youngkin and advocates at a hearing Wednesday.

The funding issue comes as a recent report on the state’s Medicaid spending suggested a $3.2 billion shortfall over the next three years. In that report Youngkin blamed quote “fraud, waste and abuse,” without specific examples, as well as poor performing service providers.

Virginia’s legislature, backed by Governor-elect Abigail Spanberger, will use Youngkin’s budget as a starting point when they return to Richmond for the 2026 session next week. Democratic leadership in both legislative chambers have promised to meet DOJ demands.

Read the full article here

Georgia agency proposes changes to waiting list for services for people with disabilities

By Maya Homan, The Georgia Recorder, January 2, 2026

A key program aimed at helping individuals with intellectual and developmental disabilities gain access to home care may be getting a refresh in 2026.

Officials at Georgia’s Department of Behavioral Health and Developmental Disabilities unveiled a series of proposals during a December board meeting aimed at restructuring the waiting list for a state-run Medicaid program that provides waiver services to people with disabilities. The waivers can be used to provide services like medical supplies, personal care assistants and emergency alert systems.

However, the proposals made to the board are just recommendations, and a timeline to move forward with the plan has not yet been set.

Georgia had over 7,800 people on a waiting list for waivers as of this past March, though the agency says not everyone who is on the list has an urgent need for services. Boosting state funding to provide services to more people has long been a perennial issue at the state Capitol, and there’s been a push in recent years to work toward ending the wait list entirely. 

Members of an advisory council dedicated to addressing the issue say the first step to revamping the program will be to identify which applicants have the most urgent needs so their applications can be prioritized.

“When I hear on the street that we’ve got 7,000 people on a planning list, everybody panics,” said Bruce Lindemann, who serves as the chair of the state’s Intellectual and Developmental Disabilities Advisory Council. “We need to understand, first, what comprises that planning list.”

Under a new proposal, Georgia’s existing waiting list would be restructured into a three-tiered system that distinguishes between those with urgent needs, those who are expected to need services in the next one to five years and those who may need services even further in the future. The council also recommended that the Department of Behavioral Health and Developmental Disabilities create a new type of waiver for individuals with disabilities who don’t currently qualify for the New Option Waiver or Comprehensive Support Waiver Program, and implement a new assessment tool to improve data collection.

“Our charge is to ensure Georgia’s planning list assessment process is fair, accurate and aligned with national best practices, while remaining workable for DBHDD staff,” said Rita Young, the executive director of Participant Directed Advocates of Georgia, a nonprofit that supports individuals and families who participate in the two waiver programs.

Georgia leaders are also taking inspiration from states like Louisiana and Pennsylvania, which already have systems in place to prioritize waiver services based on the urgency of the applicant’s need.

Continued

California - Alameda Health System to Lay Off Almost 300 After Massive Medicaid Cuts

By the Staff of the Alameda Post, January 6, 2026

Thanks to the Trump Administration’s “Big Beautiful Bill,” which slashed Medicaid (Medi-Cal in California) by more than $900 billion over the next 10 years, according to the Congressional Budget Office, Alameda Health System (AHS) has been forced to slash its budget for the coming year. That means, in part, laying off 296 employees across the system, AHS said in a statement reported by Becker’s Hospital Review.

“Due to these significant external cuts in funding, AHS must take a proactive approach to decreasing its organizational expenses, including labor expense,” the statement said.

The total annual budget for AHS is roughly $1.4 billion, according to its budget documents, KQED reported. Officials said the system could face additional losses of up to $60 million per year due to federal funding cuts to states that pay hospitals who treat a large share of Medi-Cal patients.

AHS expects to lose “more than $100 million annually by 2030,” according to a statement quoted in the KQED report. “AHS projects that cash will run out by approximately August 2026 without immediate action,” the statement said. “In order to be proactive and ensure that AHS can continue to provide a range of emergency and comprehensive care, AHS has made the painful decision to reduce some services, reduce its workforce, and eliminate certain programs.”

The cuts will affect staff working in administrative services, clinical care, management, and support roles throughout the system, “creating significant concerns for patient care delivery and workforce stability,” according to a Nurse. org report. “For AHS, where about 60% of patients are covered by Medi-Cal, California’s version of Medicaid, this is like pulling the rug out from under an already wobbly table.”

Continued

CPCIDD Report Reveals Persistent Barriers to Employment for Californians with Intellectual & Developmental Disabilities

Press Release from California Policy Center for Intellectual and Developmental Disabilities, January 7m 2026

New CPCIDD Report Reveals Persistent Barriers to Employment for Californians with Intellectual and Developmental Disabilities

The California Policy Center for Intellectual and Developmental Disabilities (CPCIDD) today released a new statewide report, Challenges and Barriers to Employment for People with Intellectual and Developmental Disabilities in California, offering a comprehensive examination of why competitive, integrated employment remains out of reach for many adults with intellectual and developmental disabilities (IDD).

Funded by Ability Central, the report draws on eleven roundtable discussions and five in‑depth interviews with employers, supported employment providers, regional center employment specialists, people with IDD, and family members. The findings highlight systemic, structural, and informational barriers that continue to limit access to meaningful work—despite California’s decade‑old Employment First policy.

“People with IDD want to work,” said Teresa Anderson, Executive Director of CPCIDD. “But the systems surrounding employment—transportation, benefits, service structures, and workforce capacity—are often misaligned or difficult to navigate. This report provides a clear look at where those barriers exist and what can be done to reduce them.”

The report identifies several recurring challenges across stakeholder groups, including:

• Low employment rates for adults with IDD, which have remained between 12.4% and 17.2% over the past 15 years.
• Employer uncertainty about reasonable accommodations, liability, and the role of job coaches.
• Inconsistent job coaching quality and workforce shortages that limit access to skilled employment support.
• Transportation barriers, especially for individuals who rely on paratransit or work nontraditional hours.
• Fear of losing essential benefits, including SSI, SSDI, Medi‑Cal, and IHSS, which often discourages individuals from pursuing more hours or new opportunities.
• Regulatory and rate‑related constraints that limit provider flexibility and the availability of specialized employment supports.

Read the full article here

When School Ends: The Hidden Crisis Facing Adults with Profound Autism

By David J. Kang, Autism Spectrum News, January 5, 2026

For nearly two decades, our mornings have been marked by the familiar sound of a school bus pulling up in front of our home. The doors hiss open, followed by a greeting from the bus driver as they pull Philip’s wheelchair onto the platform. The bus would rumble away, leaving behind a silence that began our day.

Next year, that bus will stop coming.

Philip will turn twenty-three, an age that for most families marks the start of adulthood. For ours, it marks an ending. When his school closes its doors, so too will the structure that has anchored our family’s life until now. The strict morning routine, the teachers who know his sounds and gestures, the small victories celebrated in the classroom will vanish with the end of the school year.

Philip’s world depends on predictability. His profound autism and developmental delay require full assistance, further exacerbated by his inability to speak or comprehend words. Rather, he communicates through expressions, sounds, and a handful of gestures we have learned over the years. His laughter is spontaneous and contagious. His meltdowns, while rare, fill the house with gloom. For example, every meal is an intricate dialogue of silent cues: an open mouth means “feed me”, while an arm blocking his mouth and a head turn means “I’m full”. Despite his growing age, Philip’s capabilities remain infantile: we still bathe him, change his diapers, and adhere to his 7 pm bedtime, at which the house falls silent.

Yet, most people do not see the invisible choreography that keeps his world steady. Our family lives by routines and constant vigilance. When school ends, that choreography collapses.

My parents and I have spent the past year touring adult day programs across Virginia, hoping to find a place where Philip could continue learning, socializing, or simply being safe while we work. Unfortunately, the tours blur together as we enter unsafe neighborhoods, understaffed centers, and rooms where all participants sit in front of televisions playing cartoons on loop. We have left more than one visit in silence, all of us thinking the same thing: We can’t send him here.

What’s worse, this uncertainty is not unique to us. Across the country, families face the same precipice when their loved one with autism “ages out” of school at twenty-two. Under current federal law, educational support guaranteed through the Individuals with Disabilities Education Act ends abruptly (Anderson et al., 2018; Laxman et al., 2019). Overnight, parents are left with no choice but to become case managers, advocates, and full-time caregivers again.

National estimates suggest that fewer than 20% of young adults with autism participate in day or employment programs, and access is even rarer for those with more severe forms of autism (Moser et al., 2025; Ferguson et al., 2025). Many families, particularly those from immigrant or working-class backgrounds, are forced to quit their jobs or pay privately for fragmented care (Eilenberg et al., 2019). This alarming gap between need and support is not just a statistic; it is the quiet unraveling of thousands of households like mine.

With no solution in sight, my family has begun exploring something we never imagined. We want to start a center of our own. My father, currently working in research, recently earned certification as a nursing assistant so he can help create a program for Philip. I spend weekends reading state regulations and reaching out to center founders to learn how they built their programs.

The hardest part of all of this is knowing why we are doing it. We are planning out of fear. A constant fear that Philip will spend the rest of his life in isolation, that my parents’ aging will leave him unprotected, and that one day I will be the only person left to care for him.

Continued

When Systems Don’t Fit: Navigating Lifespan Transitions for People with Profound Autism

By Liz Martineau, Autism Spectrum News, January 5, 2026

Every year, in every state, hundreds more individuals with Profound Autism age out of educational services and enter the adult services system. This process is described by many as “falling off a cliff.” Families despair of finding services that will allow their adult child to maintain their hard-won skills, continue to enhance their independence, and live lives of satisfaction and purpose. For many individuals with Profound Autism, this means continuing intensive communication and behavior supports that help them regulate themselves, maintain safety, and participate meaningfully and happily in activities.

Unfortunately, most adult service systems were designed decades ago for very different populations of adults, and they don’t include these vital supports. Parents are warned during the transition process that they need to make sure their adult child can function at lower levels of support because that is all that will be available. While this advice is well intentioned and certainly supports should be faded if they can be without causing regression, many adults will not be able to be safely served with supports removed. Many programs, observing this behavior regression will simply deny the adult participation in activities, leading to a vicious cycle of regression in skills and increases in unsafe behavior leading to further isolation of the individual, and in some cases expulsion from the program.

The Burden on Families

Parents/Guardians must be persistent in advocating for the level of support needed, including marshalling data to show the value of appropriate supports and the consequences of poor support. Parents need to educate themselves on what programs in their area can provide, and their ability and willingness to support everyone’s needs, and assist in advocacy for appropriate levels of support. It is important to begin this process several years before a child ages out, and parents should also get to know their state representative and senator and ensure that the needs of their child are well known.

What it Takes to Build Programs that Fit

Nashoba Learning Group (NLG), saw this cliff looming for our students as they began to age out of our school program 13 years ago. We resolved to create a program that provided what those with Profound Autism needed. One that would allow them to continue to thrive, add skills, and participate in activities in the community. We have worked very closely with our state’s Department of Developmental Services (DDS) and MassHealth (Medicaid) to help them understand the reality of the needs of this growing population, and to advocate for funding that allowed provision of the necessary services. DDS and MassHealth have worked with us to try to find as much of a match as possible between the funding parameters in place, and the needs of these adults. There has been slow, but meaningful progress in advancing funding, but unfortunately, within the systems in place, there is still a large gap between the funding we receive, and the costs of providing the services needed. Fueled by the growing crisis in adult services for those with intensive needs, we advocate for changes to the system and to funding levels. We have continued to grow, from our first adult in 2013 to currently serving 75 adults. We have funded the gap between costs and rates with continuous private fundraising efforts. We had to engage in extensive fundraising before we opened our doors to support the costs of procuring and renovating space and provide a needed buffer of funds to allow us to grow. Annual fundraising isn’t optional; as we grow, our fundraising target must increase each year. We are constantly balancing the need for the services we provide, with our ability to maintain the fundraising needed to fill the gap.

Critical Factors in Building a Program that Fits

And what should an appropriate Adult Program look like for this population? Offering a variety of functional and enjoyable activities at the program and in the community is important but is not the driver of whether the program is a good fit. First, there must be recognition that each adult is an individual with unique strengths, challenges and needs. Each person needs a customized multi-disciplinary assessment and plan, developed by an experienced Board-Certified Behavior Analyst (BCBA) in collaboration with other specialists. This plan should be implemented by trained and well supervised staff, with analysis of progress, and adjustments made as needed. Wages, benefits, culture, supervision, and development opportunities must be designed to keep staff turnover low and create a positive, team-oriented environment and camaraderie between staff and adults.

Assessment is an essential first step because each adult has unique needs and challenges. Understanding their history and collaborating with the school program to facilitate transition are essential to ensure continued forward progress. At NLG, each adult receives skilled assessment, and individualized behavior and skills building plan development led by a skilled and experienced BCBA. The assessment team includes a Speech Therapist with experience in Augmentative Communication, because communication needs are individualized and core to success. Nursing, PT, and OT are also critical to assessment and plan development, as are the individual’s medical providers. Part of the assessment includes determining the staffing ratio each person needs to be successful as well as the right starting point for participation in each activity offered. Some of our adults require one-on-one staffing, others can be successful in a staffing ratio but may need extra support during specific activities.

The best plans in the world only work if they are implemented well daily and monitored and revised as needed. Each staff member must be well trained, not only in the principles of behavior, reinforcement, and skills development, but they must also learn the specific plan for everyone they serve, including skills targeted, prevention activities, de-escalation where needed, ongoing communication support, as well as medical and other needs that may affect the person. Each staff member must be compassionate and empathetic to the individuals they serve. And they must feel supported by their supervisors and peers when working with the adults, including attention paid to adding to their own skills. They also need support any time there is a crisis. At NLG, each new staff member receives two weeks of training before they can work solo with an adult. They then continue to receive training, feedback and assessment of skills, as well as development opportunities throughout their careers. Clinical staff mentor each staff member and are available for support and coaching.

A critical component of recruiting, training, and retaining staff is providing the compensation and benefits that match what these individuals can command elsewhere. Paying staff appropriate wages and providing development opportunities reduces turnover and encourages staff to continue their careers in the field. The cost of direct care staffing is the lion’s share of NLG’s cost to serve each individual and is more than the wage levels built into rates. An enormous part of the nationwide shortage of direct care staff is that the wage levels offered are not competitive with what these individuals could earn at much easier jobs. Similarly, programs must pay market wages to attract and retain skilled BCBA’s to provide oversight and individualized assessment and treatment that is critical to success.

Continued

Tests for Autism? Companies Are Selling Them, but Research Is Still Scant 

By Azeen Ghorayshi, the New York Times, January 7m 2026

Academic research labs across the country are working to find biological markers that can predict whether a child is at risk of developing autism. And companies are rushing to turn the findings into commercial tests, despite limited evidence to back their validity, raising concerns that their results could mislead desperate parents.

They include one test that examines a strand of hair to rule out an autism diagnosis in babies as young as one month old. Two other tests just entered the market. One promises to predict autism risk based on skin cells collected as early as days after birth. Another looks for the presence of certain antibodies in a mother’s blood to determine whether her children, or babies that she might have in the future, are at risk of developing autism.

All the tests are based on autism research by scientists at academic institutions.

For decades, clinicians and parents have hoped for a biological test that could help determine if a child has autism. The push to commercialize investigators’ early research has accelerated as Health Secretary Robert F. Kennedy Jr. has elevated the neurodevelopmental disorder into a national political priority, creating new funding for autism research and reviving long-discredited theories about autism and vaccines.

But the new tests, largely aimed as a screening tool for the general population, are not yet reliable enough to be offered commercially, outside scientists familiar with the tests say, especially in a landscape where families are already inundated with incorrect or unverified information about autism. None of the tests has gone through large experimental trials or had its validity evaluated by a regulatory agency.

“All of these tests are interesting hypotheses,” said Joseph Buxbaum, a neuroscientist at the Icahn School of Medicine at Mount Sinai who studies the genetics of autism. But they are “absolutely not at a point for any kind of clinical use,” he said.

Dr. Buxbaum pointed to well-established genetic tests that can identify the small subset of people with an autism diagnosis — around 25 percent of them — that carry genetic variants associated with the neurodevelopmental disorder. Those tests, he said, can give families clear cut answers about the causes of the disorder that could, for example, help inform their family planning decisions.

In contrast, he said, the new tests are based on marginal evidence — including small sample sizes and a reliance on findings from animal research — and their findings are likely to be difficult to interpret.

“Families are living in a sea of uncertainty now,” Dr. Buxbaum said. “They are burdened enough without us giving unclear messages and unfortunately probably some false hope or false despair.”

Though the tests need to be prescribed by a physician, none of them is covered by insurance. They range in price from $500 to $985. And though they are overseen by federal monitoring of quality control in labs, the Food and Drug Administration does not regulate this type of test. The only assessment of whether the tests are a valid measure of autism risk is done by the companies themselves.

Continued

Please share this offer with your loved one's

Direct Support Professionals!

VOR ❤️s OUR

DIRECT SUPPORT PROFESSIONALS!

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. 

FACEBOOK: /VOR ----- TWITTER: @VOR_NET -----

Visit our YouTube Page

And visit our YouTube Archives here