March 14, 2025

Happy Pi Day!

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.

Breaking News

Congress passes Continuing Resolution to keep the government operating through September. The CR does not contain cuts to Medicaid.

The attempt to cut Medicaid will probably move quickly to a Reconciliation Bill in the Senate, as we had expected.

March is

Developmental Disabilities Awareness Month

Are your members of Congress aware of that?

Please join us on Capitol Hill

May 12-14, 2025

VOR's Annual Legislative Initiative

Washington, D.C.

We will meet in D.C. on May 12th - 14th

for meetings with

Congressional Staff and Federal Agencies

to discuss issues of critical importance to

individuals with severe or profound I/DD and autism

and their families.

This year's topics are expected to include:

Preventing Cuts to Medicaid

and

Rebuilding and Supporting our DSP Workforce

This event is open to all members of VOR

Please register early, to reserve your spot

Registration is free until March 15, 2025

So please register now!

To register for the Legislative Initiative,

Please Click Here

Unable to join us in D.C. this year?

You can still help by becoming a sponsor!

We are still far short of our goal for sponsorships

This is a critical time for our families.

The actions taken by Congress and the Administration

in the next few months could impact the lives of

hundreds of thousands of people with I/DD and autism in the years to come.

Please help us help.

Diamond - $ 5,000

Platinum - $ 2,500

Gold - $1,000

Silver - $ 500

Bronze - $ 250

Advocacy Hero - $ 100

Friends & Families - (Other amounts)

Any and all gifts are welcome

And, if you haven't already reached out:

Contact Your Governor!

Two weeks ago, we sent out snail-mail letters to the Governors of all 50 states, asking to protect the people of their state by speaking with their Members of Congress and asking them to oppose the proposed

$880 Billion cuts to Medicaid.

Please click here to download VOR's Letter

If these cuts are enacted, governors will be the ones to bear the initial burden. Their state budgets, already strapped for funds for Medicaid services, will be severely reduced. Hospitals will become overcrowded. Many will be forced to close through lack of funds.

And we all know what will happen to DD Services...

We need you to join us, by reaching out to your governor's office to tell your story, and to tell how cutting Medicaid would affect your family, and your loved ones and your state.

Your governor's contact can be found here

Once on their website, look for information on how to contact them. It may be a phone number, or an email address, but most likely there will be an online form to fill out. You may or may not be able to attach VOR's letter, but feel free to use it as a guide to writing your own letter.

But please, reach out to your state office, and to the providers and administrators of the residential facilities that provide services for your loved ones, and ask them to speak to your governors, your members of the House of Representatives and Senate to demand that Congress

MAKE NO CUTS TO MEDICAID!

It's nice to know we are not alone, that others view problems through similar lenses, and come to similar solutions. I hadn't ever heard of the National Association of Counties (NACo), but here they are, and they see the possible effects of cuts to Medicaid in much the same way as we do.

There are ripple effects to major cuts. We understand that if Medicaid is cut by hundreds of billions of dollars, even if only for "waste, abuse, and fraud", those effects will be felt by the I/DD and autism communities.

Federal Cuts to Medicaid: What Counties Should Know

By Blaire Bryant, National Association of Counties (NACo), March 10, 2025

Medicaid is a joint federal, state and local program that provides health coverage to low-income individuals, including children, pregnant women, elderly adults and people with disabilities. The program accounts for over half of all federal funding to states and is the largest source of federal funding in state budgets.

Counties play a crucial role in delivering Medicaid services by partnering with federal and state governments to manage local health systems and ensure access to care for vulnerable populations. Any reductions in Medicaid funding directly affect counties' ability to provide public health services, respond to crises and promote economic stability. 

On February 20, NACo, in partnership with a coalition of bipartisan membership organizations representing state legislators, state governments, county managers and cities sent a letter to House and Senate leadership expressing concern over proposed changes to Medicaid financing requirements, following recent reconciliation proposals that would enact significant cuts to Medicaid. 

This FAQ expands upon that letter, outlining the potential impacts of proposed Medicaid cuts to counties and offers steps county leaders can take to advocate for preserving Medicaid funding.

1. How do Medicaid cuts impact counties?

Counties are integral to Medicaid administration, funding and service delivery. In 24 states, counties contribute to the non-federal share of Medicaid costs, directly impacting local budgets. Counties also operate over 900 hospitals, 700 nursing homes and 750 behavioral health authorities, and over 1900 local health departments, providing essential healthcare services.

Medicaid covers 38 million children, funds 40 percent of all births and is the largest payer of long-term care and behavioral health services, all critical for county-operated hospitals, nursing homes and social services.

Cuts to Medicaid could lead to coverage losses, increased medical debt and higher uncompensated care costs for local providers, threatening access to affordable healthcare and placing a financial strain on county resources.

2. What potential cuts could be made to Medicaid? +

3. What are the potential consequences of these cuts? +

4. How could the FY 2025 budget reconciliation process impact Medicaid and counties? +

Next Steps:

With both the House and Senate having passed their budget resolutions, the next step is for the two chambers to negotiate a unified budget. While it’s unclear how long it will take for House and Senate Republicans to reach an agreement, one thing is predictable: the final budget will include significant government spending cuts, with Medicaid remaining a primary target. The specifics of these cuts, however, won’t be clear until the policy is written into the bill language of a reconciliation package.

Take Action:

Read the full article here

Medicaid Provides Early Intervention for Infants and Toddlers with Disabilities and Developmental Delays

Factsheet from Georgetown, University, McCourt School of Public Policy, March, 2025

Medicaid is a key source of funding for the Part C Infants and Toddlers with Disabilities program of the Individuals with Disabilities Education Act (IDEA) or early intervention.

The two programs work together to provide effective early intervention services for infants and toddlers with disabilities and developmental delays.

Medicaid covers more than 40% of births and infants and toddlers in the nation. Many infants and toddlers face developmental risks due to preterm birth, congenital conditions, or other factors. A number of studies have documented the positive effects of IDEA Part C early intervention for infants born preterm, children with autism spectrum disorder, children with Down syndrome and other diagnoses or developmental delays.² States have the responsibility under both Medicaid and IDEA Part C to identify and help finance services for infants or toddlers with developmental delays and disabilities State early intervention services support optimal development, help families care for their children, and reduce disabilities.

Part C early intervention services result in short- and long-term savings by avoiding the costs associated with children entering special education services. Reports on outcomes show that infants and toddlers with disabilities who participate in Part C demonstrate improved social-emotional skills, knowledge, and behaviors—with two thirds substantially improving and about one half catching up to a level appropriate for their age. The National Early Intervention Longitudinal Study (NEILS) found that 42% of young children served did not need special education by the time they reached kindergarten as a result of early intervention services. In addition, the program reduces disabilities, improves nutrition, and increases the potential for independent living when they become adults. 

Part C early intervention provides grants to states to assist them in making early intervention services available for infants and toddlers—from birth to their third birthday—with developmental delays or a diagnosed condition that has a high probability of resulting in developmental delay.

In 2023, approximately 540,000 infants and toddlers received early intervention services under Part C. Nationally, about 7% percent of US children under age 3 receive services. On average, in recent years, 15% were referred, 11% were evaluated, and 8% were found eligible for Part C services. The percentage of children from birth to age 3 served varies substantially across states, in part because of differences in state eligibility policies and enrollment efforts.

Read the full article here

Breaking News:

Trump CMS nominee Dr. Oz won’t commit to opposing Medicaid cuts

By Kevin Breuninger, CNBC, March 14 2025

Dr. Mehmet Oz, President Donald Trump’s pick to lead the agency in charge of massive government-run health insurance programs, on Friday declined to commit to opposing future cuts to Medicaid when directly asked if he would do so.

Instead, the nominee for administrator of the Centers for Medicare & Medicaid Services said that the way to protect Medicaid is “making sure that it’s viable at every level.”

The exchange during Oz’s Senate confirmation hearing raises fresh questions about the fate of Medicaid under a Republican-led Congress and White House, despite Trump’s promises to preserve it and other federal safety-net programs.

The nonpartisan Congressional Budget Office said last week that House Republicans’ current budget cannot meet its spending-cut goals without significantly cutting Medicare or Medicaid coverage.

Sen. Ron Wyden, D-Ore., the ranking member of the Senate Finance Committee, asked Oz on Friday, “Since you cherish Medicaid, will you agree to oppose cuts in the Medicaid program?”

“I cherish Medicaid, and I’ve worked within the Medicaid environment quite extensively, as I highlighted, practicing at Columbia University,” Oz said.

Wyden replied, “That’s not that question, doctor. The question is, will you oppose cuts to this program you say you cherish?”

Oz again declined to say that he would.

Continued

From our friends at Community Catalyst:

TAKE ACTION!

Members of Congress are heading home for recess, making this a great time to amplify community voices in support of Medicaid.

Let’s make sure Members of Congress (MOCs) know that their constituents will not allow them to make massive cuts to Medicaid and other programs that keep people healthy in order to pay for tax cuts for billionaires and corporations.

To help you engage MOCs and your community of supporters, Community Catalyst has compiled a list of resources focused on effective organizing tactics, messaging, and direct outreach. In particular, we’ve posted a collection of recess-specific tools at the top of our Medicaid Defense resource hub so that it’s easy to find what you need and take action to protect Medicaid.

CDC To Revisit Debunked Link Between Vaccines And Autism

By Michelle Diament, Disability Scoop, March 10, 2025

The Centers for Disease Control and Prevention is planning a large study on the long-discredited connection between autism and vaccines, a move that advocates say will squander precious government resources.

Officials at the U.S. Department of Health and Human Services confirmed late last week that a study is in the works less than a month after Robert F. Kennedy Jr. took over the agency. He has spent years promoting a link between autism and vaccines and refused to disavow such views during his confirmation hearings.

“As President Trump said in his Joint Address to Congress, the rate of autism in American children has skyrocketed. CDC will leave no stone unturned in its mission to figure out what exactly is happening,” said Andrew G. Nixon, a spokesman for the Department of Health and Human Services. “The American people expect high quality research and transparency and that is what CDC is delivering.”

Continued

Related article from CNN

As Education Department Slashes Nearly Half Its Staff, Special Ed Worries Mount

By Michelle Diament, Disability Scoop, March 12, 2025

The U.S. Department of Education is firing almost 1,400 employees raising questions about how the federal government will uphold its obligations under the Individuals with Disabilities Education Act and other laws.

The agency said that with the layoffs announced late Tuesday, its workforce will be roughly half the size it was when President Donald Trump was inaugurated in January. Nearly 600 employees have already resigned or retired since that time.

The cutbacks will affect every division within the agency, the Education Department said, with some expected to see major reorganization. However, officials indicated that they would maintain statutory programs including formula funding, competitive grantmaking and “funding for special needs students.”

“Today’s reduction in force reflects the Department of Education’s commitment to efficiency, accountability, and ensuring that resources are directed where they matter most: to students, parents, and teachers,” said Secretary of Education Linda McMahon.

Trump has pledged to close the Education Department and McMahon said the workforce reduction is a step toward fulfilling that goal.

“What we did today was to take the first step of eliminating what I think is bureaucratic bloat,” McMahon said in an interview on Fox News. She said that staff are being retained to ensure that programs like IDEA, which receives appropriations from Congress, don’t “fall through the cracks.” But, when asked what IDEA stood for, McMahon said it was only her fifth day on the job.

“I’m not sure I can tell you exactly what it stands for, except that it’s the programs for disabled and needs,” she said.

Continued

What the Education Department layoffs could mean for students with disabilities

By Tyler Kingkade and Adam Edelman, NBC News, March 12, 2025

Experts say this week's mass layoffs could lead to less research and support for children with special needs.

Massive layoffs initiated this week at the Education Department could hamstring the federal government’s efforts to assist students with disabilities, former officials and education experts said, citing blows to the agency’s civil rights and research divisions. 

On Tuesday, the department began laying off around 1,300 employees, cutting nearly half the staff in its Office for Civil Rights (OCR) and over 100 from the Institute of Education Sciences, according to information released by American Federation of Government Employees Local 252, the union for department staff members. 

The cuts in those two divisions mean there will be far fewer staff members to finish the 12,000 pending federal investigations into allegations of civil rights violations at schools — roughly half of which involve disability issues — and fewer employees to review and distribute government-funded research into effective ways to educate children with autism or severe intellectual disabilities. 

The layoffs are the first step toward dismantling the department, a goal espoused by President Donald Trump and his education secretary, Linda McMahon. Experts say they raise concerns about what the future will look like for civil rights enforcement as the Trump administration continues chipping away at federal oversight. 

“That’s hundreds of investigators who no longer work for OCR and whose expertise that OCR has benefited from over all these years that the nation is now losing,” said Catherine Lhamon, who led the Office for Civil Rights during the Obama and Biden administrations. 

Continued

CMS Rescinds Guidance For Medicaid’s Health-Related Social Needs

By Joyce Famakinwa, Home Health Care News, March 10, 2025

The U.S. Centers for Medicare and Medicaid Services (CMS) has revoked guidance related health-related social needs (HRSN) through Section 1115 waivers. Industry advocates say the move is indicative of the broader administration priorities to reduce Medicaid expenditures.

Broadly, states use these programs to pay for health related social services, including meals and temporary housing.

Damon Terzaghi, senior director of Medicaid and home- and community-based services at the National Alliance for Care at Home, pointed out that individuals who utilize home and community-based services sometimes overlap with those who are in need of these social services. 

“In fact, interviews with individuals across the country who help participants transition from institutions to the community consistently show that lack of affordable housing is one of the main barriers to such transitions,” he said in an emailed statement. “We also know how important nutrition is in maintaining healthy community living and preventing falls or other adverse outcomes. So while these SDOH/HRSN services are not specifically ‘home care,’ we do think that a decline in these supports will place more pressure on our provider members to meet the needs of the individuals they serve.”

In an informational bulletin, CMS said its pulling away November 2023 and December 2024 health-related social needs guidance.

Georgia Goodman, director of Medicaid policy at LeadingAge, called the latest move a demonstration of the current administration’s sentiment towards services delivered through Medicaid.

“This policy change is coming from the federal administration and signals a move away from supporting states in providing health-related social needs like supports with housing and tenancy support, nutrition services, and a broad array of similar health-adjacent services,” she told HHCN in an email. “Under the prior administration, guidance was released demonstrating a path forward in supporting individuals via Medicaid with things like first month’s rent, social services to support tenancy stability, nutritional counseling, and intensive mental health services to support more stable environments for individuals.”

Goodman believes that CMS may consider approvals for these kinds of services through Medicaid in the future, but that a more stringent review is likely.

“States that already have approved 1115 waivers that provide these services are not facing the elimination of the federal approval of these services though there could be challenges at the time of renewal,” she said.

“This is a disturbing demonstration that the current administration prefers to limit access to services that keep people healthier, housed, and stable,” she said. “We continue to be concerned about administrative changes like this one that will limit access to services, independent of the threats posed through the congressional budget process.”

Read the full article here

Parents and advocates say Kentucky’s disability care system needs fixing

By Anabel Peterman, Morehead State Public Radio, March 11, 2025

According to the Kentucky Advisory Council on Autism, one in 36 children born nationwide is diagnosed with autism by eight years old. Advocates said of these children, many have profound social and intellectual disability and require more care options than the state currently provides.

In a recent Senate Standing Committee on Families and Children meeting, Kentucky lawmakers heard testimonies about the difficulty of obtaining autism care in the Commonwealth. Presenters said long wait times for diagnosis and treatment, alongside limited options throughout the country, have created an unnavigable landscape.

Rachel Moldoveanu, a former nurse practitioner and the mother of a profoundly autistic teenager, shared her story alongside practitioners and policymakers in February. Her son currently resides in a care facility in Kansas because of Kentucky’s lack of viable options. She said while attaining care for her son, she was pushed to relinquish custody of him to the state. Moldoveanu received legal counsel and was able to keep custody, but she said families like hers almost always feel like they have no other choice.

“Everyone is cornered into putting their kid into state custody, and I don’t believe that’s the right way,” said Moldoveanu. “If they can make a single case agreement for me and my family, why can’t that be the case for everyone? And what laws do we have, what hurdles are there to keep families from having to do this?”

Her family made the decision to place their son in that out-of-state residence because he was a danger to himself and others in their own home, and he is adjusting well. Moldoveanu said Kentucky is in dire need of a similar facility, one which accepts Medicaid and operates not-for-profit.

“I think it needs to be a facility that can serve the severe needs of our kids. I mean, my kid isn’t the only one. There are hundreds of families living day by day in crisis,” said Moldoveanu.

Continued

A hidden housing crisis: The fight for stable homes for Delaware adults with intellectual and developmental disabilities

By Johnny Perez-Gonzalez, WHYY, March 11, 2025

Advocates are pushing for more resources to help adults with disabilities in Delaware who live with aging parents.

Discussions about Delaware’s housing crisis have often focused on skyrocketing rents, homelessness and the need for more affordable housing units. But tucked away in the shadows of these conversations is a population rarely thought about when it comes to housing: adults with intellectual and developmental disabilities, many of whom live with aging parents who will not always be able to care for them.

It’s a personal reality for Liz O’Neill and Pat Swanson. Both of their children are adults with IDDs who have lived at home for decades. O’Neill is the president of A-Team Delaware, a nonprofit group that advocates for Delawareans with IDDs. O’Neill and Swanson, A-Team’s vice president, are advocating for change.

“We’re aging,” O’Neill said. “I’m 66, my husband’s 74, our daughter’s 35. We really have to plan for when we’re either not able to care for her because we’re not healthy enough — or we die, because everybody’s going to die. And we feel like sometimes we can’t operate in an emergency situation.”

A 2020 report estimated that 8.38 million people in the U.S. have IDDs, yet many struggle to access proper housing and care. In Delaware alone, The Arc of Delaware, a nonprofit, estimates there are nearly 30,000 adults with IDDs. A 2021 report from the University of Kansas’ State of the States in Intellectual and Developmental Disabilities project found that about 75% of adults with IDDs in Delaware still live with their parents, and nearly 30% of those caregivers are over the age of 60 — higher than the national average.

Yet Delaware has no comprehensive plan for where these adults will go when their parents or caregivers are no longer around. According to O’Neill, part of the problem is a lack of data collection on IDD housing needs and a limited number of housing models designed for adults with disabilities.

“This preplanning, this understanding what the numbers are, understanding the demand is part of what we want to see our state do and plan for that infrastructure,” she said.

“There needs to be a state plan,” echoed Swanson. “If we don’t address this now, we’re going to pay for it in the long run.” 

A system that stops at 21

The challenge for the IDD community begins right after turning 21. For children with disabilities, Delaware offers structured support through the education system, providing individualized programs and resources. But at age 21, that safety net disappears.

“When you have a school-aged child, from birth to age 21, your benefits as a person with disability is an entitlement. In school, you’re entitled to a free, appropriate public education in the least restrictive environment. And the school services are pretty good,” O’Neill said. “But there is a big drop-off in services when your adult reaches age 21. And one of those areas is with residential services.”

Housing, in particular, becomes a massive hurdle. While the state provides Medicaid-funded waiver services to cover support for individuals with IDDs, the number of available housing options is extremely limited.

“We go from an entitlement program to an eligibility criteria. So the world really changes when you reach that adult world,” she added. “And there just aren’t as many residential options to meet the needs of the individuals.” 

Continued

Legislation could exempt Illinoisans with intellectual disabilities from restrictive testing for prison programs

By Mike Miletich, WAND News, March 13, 2025

State representatives hope to create a more equitable system for incarcerated people with disabilities to have education and job opportunities.

Anyone entering the Illinois prison system is required to take the Test of Adult Basic Education, or TABE. Although, experts believe the test does not adequately accommodate the unique cognitive and learning needs of people with developmental or intellectual disabilities.

House Bill 1810 would allow incarcerated Illinoisans with intellectual or developmental disabilities to have a waiver for the test and ensure equal access to sentence credit opportunities.

"The prevalence of individuals with intellectual and developmental disabilities within IDOC is likely significant, but systemic barriers often hinder our ability to accurately identify those who are affected," Said Rep. Laura Faver Dias (R-Grayslake).

The proposal also calls for annual training for prison staff to identify people with disabilities and provide accommodations for education or work. Individuals with intellectual or developmental disabilities who are denied access to programs or accommodations would have the ability to file grievances with IDOC if the plan is signed into law.

Continued

As some argue for equity, Connecticut advocates say disabled workers need subminimum wage  

By Livi Stanford,. The Hartford Courant, March 3, 2025

Dan Lenz always wanted to work and have an apartment of his own — a simple wish that his mother, Fay Lenz, said posed challenges for the Avon resident with intellectual disabilities and autism.

But Lenz said her son has thrived in the workforce for 20 years and now works at an electrical and building infrastructure company in West Hartford that pays disabled workers less than minimum wage. The company is one of several that holds a certificate under Section 14(c) of the Fair Labor Standards Act to pay workers a subminimum wage.

Now Lenz fears that HB 5607, a proposed state law by Rep. Steven Winter, D-94, that would eliminate the subminimum wage, will also eliminate jobs for people like her son.

Advocates of the bill say it is about fairness and dignity for workers with disabilities but opponents like Fay Lenz say it is not a given that workers like her son will find other jobs.

“They do not have enough employers who are hiring people with disabilities and educating employers to the fact that people with disabilities have skills,” Fay Lenz said. “Some kids may never be able to develop skills to be paid minimum wage.”

Lenz said keeping the subminimum wage does not mean she is opposed to workers with disabilities being paid the full minimum wage of $16.35 an hour.

“Until we can get the correct support in place and get the jobs, we are dumping our kids into nothing,” she said.

Continued

Opinion: Protecting Medicaid’s promise for Alaskans with disabilities

By James Ian Casey, Eric Gurley, Cindy Hensley and Michele Girault, Anchorage Daily News, March 10, 2025

In Alaska, people with disabilities and seniors rely on Medicaid for their long-term care and support needs. These are our neighbors, family members, and friends — and they deserve the support needed to live as independently as possible, have careers and thrive in their communities.

That support might be in the form of someone coming to or living in their home to help with activities of daily living, help them find and retain a job, provide transportation to it, ensure they can participate in community events and maintain meaningful relationships.

Unfortunately, proposals to slash Medicaid funding that are moving through Congress as part of the reconciliation process threaten to unravel the vital support system hundreds of thousands of Americans with intellectual and developmental disabilities rely on to remain in their homes and communities.

Medicaid isn’t just a line item in the federal budget — it’s a lifeline for our family, friends and neighbors. As lawmakers consider drastic cuts to Medicaid funding, they risk dismantling a system that enables people with disabilities — and the people who support them — to live, work and thrive in their communities. Medicaid is funded by our state with matching funds from the federal government.

Significant cuts to federal Medicaid funding will place additional financial strain on state budgets, forcing states to absorb the increased costs. Any cuts to federal funding for Medicaid will force our state to make impossible choices about crucial and life-saving programs and services at a time our state budget is already stretched to meet multiple demands. State budgets must prioritize mandatory Medicaid services, leaving optional services like community-based services vulnerable to reductions.

Reducing Medicaid funding is even more devastating given that our state is already struggling to provide the home- and community-based services promised to people due to a lack of workers in the field. Wages for Direct Support Professionals (DSPs) and Personal Care Attendants (PCAs) who assist with everything from personal care to job training are tied directly to the Medicaid reimbursement rate that has long been insufficient to attract and retain the workforce to this meaningful but underpaid profession.

Community-based services fuel local economies, not only by creating direct support jobs but also by helping people with disabilities stay employed and enabling their family members or caregivers to stay in the workforce.

Medicaid cuts won’t save money — they’ll shift costs to states, forcing our state to make impossible choices about crucial and life-saving programs and services at a time when our state budget is already stretched to meet multiple demands.

As providers of these critical services, we call on Sens. Murkowski and Sullivan and Rep. Begich to protect people with disabilities and their families, our economy, and our communities by rejecting Medicaid cuts, whether those cuts are proposed through the reconciliation package or through some other federal action. Simply stated, we need to strengthen — not weaken — our commitment to Alaskans with disabilities. Doing so requires both federal and state investments in these services and the support professionals who deliver them.

Read the full article here

Medicaid shortfall forces California to borrow $3.44B                

By Rachel Bluth, Politico, May 12, 2025

California will need to borrow $3.44 billion to close a budget gap in the state’s Medicaid program, Newsom administration officials told lawmakers Wednesday in a letter obtained by POLITICO.

That’s the maximum amount California can borrow, and will only be enough to cover bills for Medi-Cal — the state’s Medicaid program — through the end of the month, Department of Finance spokesperson H.D. Palmer separately told POLITICO.

The budget pressure will bring fresh scrutiny to the state’s coverage of undocumented immigrants, which is costing more than first budgeted.

Originally, the state estimated it would cost around $3 billion per year to insure that population. But one year after the program has been fully implemented, it’s turning out to be more expensive than anticipated.

Gov. Gavin Newsom’s current budget proposal estimates the state will shell out $8.4 billion to cover undocumented immigrants in Medi-Cal in 2024-2025, and $7.4 billion in 2025-2026.

The budget pressure could force hard choices, like capping enrollment or limiting benefits. But Assembly Speaker Robert Rivas said he’s proud of the state’s efforts to expand Medi-Cal to all regardless of immigration status.

“There are tough choices ahead, and Assembly Democrats will closely examine any proposal from the Governor,” Rivas said in a statement. “But let’s be clear: We will not roll over and leave our immigrants behind.”

In a joint statement, Senate Leader Mike McGuire, Majority Leader Lena Gonzalez and Budget Chair Scott Wiener said they would be working with the Assembly and with Newsom’s office on “responsible and long-term solutions.”

“Here in the Golden State, we remain steadfast in our commitment to ensuring millions of Californians have the healthcare coverage they need to thrive,” the statement said. “That access to healthcare is being threatened by skyrocketing healthcare costs across the nation, and even more by the dangerous cuts threatened by President Trump and Congressional Republicans that will impact the lives of tens of millions across this country.”

California has been covering undocumented children on Medi-Cal since 2016. Under Newsom, the program has slowly expanded, to young adults in 2020, older adults in 2022 and then all ages in 2024.

Continued

Pensylvania - For teens with disabilities, transition to adulthood varies widely by school and state

By Rich Lord, Public Source via Youth Today, March 11, 2025

Pennsylvania schools must help 14-year-old students with IEPs to plan their future. In a state with 500 school districts, that process is far from uniform. A state panel aims to compel improvements.

Judah raced out of Pittsburgh Youth Chorus practice and on to the Duquesne University practice field, his mom trailing. He’s been going to chorus for some time, but had he previously ventured out on the field? “First time ever!” he announced before dashing toward the large, blue letter “D” at midfield.

His mother, Teaira Collins, wasn’t far behind, telling him not to pull on the soccer net. “I’m no longer living in my world. I’m living in his world,” she said of her 12-year-old son, who has Down syndrome. “Ju Bug’s world.”

Ju Bug’s world will change in around 18 months, when he hits high school. Collins has parented a child with special needs through high school before, and it did not go so well.

When her now-21-year-old son was 14, his mental health condition had not been properly diagnosed, she said. He didn’t get the right medication, and the teachers didn’t know what to do.

“He couldn’t focus or do what he had to do,” Collins said of her elder son’s time at Pittsburgh Allderdice High and later at Pittsburgh Milliones 6-12 University Preparatory School. “When he got to high school, he didn’t care.”

Individualized education program [IEP] meetings brought teachers and counselors to the table, but they never found an educational option that worked. These days, he’s mostly at home.

Judah, in 7th grade, is doing well at Pittsburgh Arsenal 6-8 and in extracurriculars including chorus and a range of sports. Still, Collins knows that high school can be a minefield.

“I’m not as worried because you can’t mess up a Down syndrome diagnosis,” Collins said.

Not as worried — but very determined. Judah has ambitions to be a disc jockey or YouTuber — plus to one day own a Lamborghini — and she’s determined that the school will be supportive. “When he gets to high school, I’m going to let them know: This is his life.”

That philosophy is in line with Pennsylvania law, which holds that during the academic year in which a student with an IEP turns 14, the school must address and plan for their needs as they transition to adulthood. (Federal law requires that the process starts no later than the year the student turns 16, but allows states to set earlier thresholds.) The school is charged with asking the student questions like “Where do you want to work?”

“It’s such a critical point in any young person’s life, but when you’re talking about a young person with a disability, they’re going from entitlement services [which school districts must provide] to eligibility-based services” for which they need to apply, said Kelli Thuli Crane, an assistant research professor at the University of Maryland and co-director of the Center for Transition and Career Innovation.

Continued

We reported last week on the re-emergence of the "R" word, and its increased use on social media platforms, including X and TruthSocial.

Now, we are saddened to report that the words "disability" and "disabilities" are being purged from government documents.

These Words Are Disappearing in the New Trump Administration

By Karen Yourish, Annie Daniel, Saurabh Datar, Isaac White and Lazaro Gamio, The New York Times,

March 7, 2025

As President Trump seeks to purge the federal government of “woke” initiatives, agencies have flagged hundreds of words to limit or avoid, according to a compilation of government documents.

[These] terms appeared in government memos, in official and unofficial agency guidance and in other documents viewed by The New York Times. Some ordered the removal of these words from public-facing websites, or ordered the elimination of other materials (including school curricula) in which they might be included.

In other cases, federal agency managers advised caution in the terms’ usage without instituting an outright ban. Additionally, the presence of some terms was used to automatically flag for review some grant proposals and contracts that could conflict with Mr. Trump’s executive orders.

Read the article on the removal of "disabilities" and other words here.

Read the article on the return of the "R" word here

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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.

What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?

Do you have information or a news story you would like to share?

Is there legislation in your state house that needs attention?

Contact us at info@vor.net

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

VOR SUPPORTS:

H.R.869 - Rep. Susie Lee (D-NV)

To require full funding of part A of title I of the Elementary and Secondary Education Act of 1965 and the Individuals with Disabilities Education Act.

H.R.1509 - Rep. Lori Trahan (D-MA)

To 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.

S.752 - Sen. Chuck Grassley - (R-IA)

Accelerating Kids' Access to Care Act - A bill to amend title XIX of the Social Security Act to streamline enrollment under the Medicaid program of certain providers across State lines.

H.R.1950 - Rep. Mark Pocan (D-WI)

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. 

VOR OPPOSES:

To date, no bills have been entered that VOR outwardly opposes, though we understand that the budget process is about to begin, and we expressly oppose any attempt to cut $880 billion from Medicaid should that be proposed.