June 6, 2025

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.

VOR's Board of Directors cordially invites you to attend:

VOR's 2025 Annual Meeting

Sunday, June 8, 2025

3 pm ET / 2 pm Central / 1 pm Mountain / Noon Pacific

on Zoom

Every year in June, VOR's Board of Directors holds an open meeting to introduce ourselves to members and give them a chance to interact and share their concerns, challenges, and achievements.

We will discuss the health of the organization, discuss our financial picture, review our legislative agenda and ongoing advocacy campaigns, and present our goals for the years ahead. We will present this year's VOICE Award, and hold an open forum of state reports and issues that face our families and loved ones.

This meeting is open to all VOR members

State Reports Forum

What is happening in your state?

We ask our members to prepare written reports we can post on our website and to make oral presentations at this meeting in order to keep others up to date about the big picture involving I/DD and autism issues, challenges, and victories in their states.

Please submit your written reports to hdwyervor@gmail.com

For the meeting agenda and other information, go to our website: www.vor.net

We would like to begin this week's newsletter with a statement from a friend:

Opinion: Public Statement from the National Alliance for Direct Support Professionals (NADSP) Board of Directors

By Joseph Macbeth, May 28, 2025

As the Board of Directors of the National Alliance for Direct Support Professionals (NADSP), we speak today not only as organizational leaders but as steadfast advocates for more than 1.5 million direct support professionals (DSPs) and the millions of people with intellectual and developmental disabilities they support.

We call on the United States Senate to reject the House-passed Reconciliation Budget Act, a bill that would recklessly strip more than $715 billion from Medicaid and nearly $300 billion from the Supplemental Nutrition Assistance Program (SNAP), threatening the lives and livelihoods of millions of Americans.

This legislation is a blueprint for dismantling the community-based support systems that have taken generations to build. Its consequences would be catastrophic:

• For people with disabilities, it means the loss of autonomy, dignity, and the right to live independently in their communities.
• For direct support professionals, it means mass job losses, wage stagnation, and the elimination of vital food assistance for thousands of frontline workers.
• For states, it means devastating budget deficits that will lead to either deep service cuts or crushing tax increases.
• For the nation, it represents a betrayal of our most fundamental moral obligations.

Medicaid is more than a line item, it is a partnership between the federal government and the states that sustains healthcare, housing, and human dignity. Cutting $715 billion will force states to gut home and community-based services, disenroll those in need, and re-institutionalize people with disabilities—reversing decades of civil rights progress. The principle of “community living,” protected under federal law and affirmed in Olmstead v. L.C., would become a hollow promise.

Direct support professionals are highly trained, deeply compassionate professionals who ensure that individuals with disabilities live full, safe, and meaningful lives. Nearly all direct support services are funded through Medicaid. Slashing Medicaid funding will eliminate jobs, deepen the workforce crisis, and stretch remaining staff beyond their limits. The result is predictable and devastating:

• People with disabilities left without necessary support.
• Emergency rooms and crisis centers overwhelmed.
• Family caregivers even more overburdened.

The direct support workforce is already on the brink. These cuts would break it.

Continued

The Congressional Budget Office has released its preliminary scoring estimates of H.R.1 "The One Big Beautiful Bill Act"

Download the CBO's Estimated Budgetary Effects of H.R.1, "The One Big Beautiful Bill Act" here

Download the data from the CBO's Estimate here

Download the CBO letter to Ranking Member Wyden, Ranking Member Pallone, and Rankiing Member Neal here (this is a summary of the CBO's findings)

Wyden, Neal, Pallone Release Latest CBO Estimates Showing 16 Million People Will Become Uninsured from Republican Health Agenda

United States Senate Committee on Finance, Ranking Member's News, June 4, 2025

Senate Finance Committee Ranking Member Ron Wyden, D-Ore., House Ways and Means Committee Ranking Member Richard E. Neal, D-Mass., and House Energy and Commerce Committee Ranking Member Frank Pallone, Jr., D-N.J., released a statement following a new analysis from the Congressional Budget Office (CBO) showing 16 million people will lose coverage from the Republican reconciliation plan, including their failure to extend premium tax credits that Americans use to buy affordable health insurance. 

Read the full press release here

Allocating CBO’s Estimates of Federal Medicaid Spending Reductions and Enrollment Loss Across the States

Rhiannon Euhus, Elizabeth Williams, Alice Burns, and Robin Rudowitz, KFF, June 4, 2025

On May 22, the House passed a reconciliation bill, the One Big Beautiful Bill Act. The Congressional Budget Office’s (CBO) latest cost estimate shows that the bill would reduce federal Medicaid spending by $793 billion and that the Medicaid provisions would increase the number of uninsured people by 7.8 million. Previous CBO estimates show that 10.3 million fewer people would be enrolled in Medicaid.

Building on prior KFF analysis, this analysis allocates CBO’s federal spending reductions and enrollment losses across the states. The Medicaid reconciliation provisions are numerous and complicated, but the majority of federal savings stem from work requirements for the expansion group, increasing barriers to enrolling in and renewing Medicaid coverage, and limiting states’ ability to raise the state share of Medicaid revenues through provider taxes.

This analysis allocates the CBO’s estimated reduction in federal spending across states based on KFF’s state-level data and where possible, prior modeling work; and shows the federal spending reductions relative to KFF’s projections of federal spending by state under current law. KFF allocates the spending reductions provision-by-provision, pulling in a variety of data sources on which states are estimated to be most affected by each provision (see Methods). The analysis then uses KFF’s state-by-state estimates of reduced federal spending to allocate the reduction in Medicaid enrollment across the states. KFF only includes provisions expected to reduce Medicaid enrollment in that component of the analysis (see Methods).

This analysis does not predict how states will respond to federal policy changes, and anticipating how states will respond to Medicaid changes is a major source of uncertainty in CBO’s cost estimates. Instead of making state-by-state predictions, CBO generates a national figure by estimating the percent of the affected population that lives in states with different anticipated types of policy responses. For example, different states might choose to implement a work requirement with reporting requirements that are easier or harder to comply with.

In estimating the costs of the legislation, CBO assumes that in aggregate, states would replace half of reduced federal funds with their own resources in response to provisions that reduce the resources available to states, such as limits on provider taxes. For provisions that reduce enrollment but don’t affect the division of costs between the federal and state governments, such as work requirements, CBO estimates that the federal and state governments would share those savings. However, those assumptions reflect states’ responses as a whole and are likely to vary and may not apply in all states.

To the extent that states’ responses are far different from the overall average response, changes in federal Medicaid spending and Medicaid enrollment will be larger or smaller than what is shown here. States could make further Medicaid cuts, which would result in enrollment loss and spending reductions greater than is estimated here and further reduce states’ Medicaid spending. Alternatively, states could increase their spending on Medicaid to mitigate the effects of federal cuts, which could result in enrollment loss and spending reductions that are smaller than is estimated here. This analysis illustrates the potential variation by showing a range of spending and enrollment effects in each state, varying by plus or minus 25% from the CBO estimated midpoint.

Key Take-Aways

• After accounting for CBO’s estimated interactions, KFF estimates that the House-passed reconciliation bill would reduce federal Medicaid spending by $793 billion. (Without accounting for interactions, the total is $863 billion, see Methods).
• The five biggest sources of Medicaid savings in the House-passed reconciliation bill sum to $736 billion in savings, which is 85% of the uninteracted total, and include:
• Mandating that adults who are eligible for Medicaid through the ACA expansion meet work and reporting requirements ($344 billion),
• Repealing the Biden Administration’s rule simplifying Medicaid eligibility and renewal processes ($167 billion),
• Establishing a moratorium on new or increased provider taxes ($89 billion),
• Revising the payment limit for state directed payments ($72 billion), and
• Increasing the frequency of eligibility redeterminations for the ACA expansion group ($64 billion).
• Provisions that would only apply to states that have adopted the ACA expansion account for $427 billion, roughly half of the total amount of federal spending reductions.
• Federal cuts to states of $793 billion over 10 years would represent 12% of federal spending on Medicaid over the period. By state, the cuts range from 5% in Wyoming and Alabama to 17% in Washington.
• CBO’s estimated 10.3 million loss of Medicaid enrollment in 2034 represents 12% of projected enrollment in that year. The most heavily affected states include Washington and Virginia where Medicaid enrollment could decrease by 26% and 21%, respectively.

Continued

CBO Scores H.R. 1: 16M Will Lose Health Insurance, $1T Of Federal Healthcare Funding Cut

Statement from Leading Age, June 5, 2025

The non-partisan Congressional Budget Office (CBO) on June 4, 2025 released an updated score for the House-passed budget reconciliation package, the One Big Beautiful Bill Act (OBBB).

The score updates the total fiscal impact by adding analysis of some previously unscored provisions and amendments to the bill made immediately prior to its May 22 passage in the House. These changes include sooner implementation of work requirements and more frequent eligibility determinations. Overall, the CBO score estimates that 10.9 million people will lose their health insurance coverage because of the bill: almost eight million will lose Medicaid coverage and the remainder would lose ACA Marketplace coverage.

In addition to that 10.9 million, CBO provided a separate June 4 estimate on additional coverage loss changes in its baseline if the Trump administration’s Marketplace rule, which would be codified by the OBBB, is implemented and if the enhanced premium tax credits, which expire at the end of 2025, are not extended. In combination, the Marketplace rule and the loss of the enhanced premium tax credits would cause 5.1 million people to lose health insurance, CBO says.

Across the reconciliation bill and the expiration of the enhanced premium tax credits, the total coverage loss estimates add up to 16 million people.

Continued

Senate GOP talks cutting Medicare ‘waste, fraud’ to offset cost of Trump tax bill 

By Alexander Bolton, The Hill, June 4, 2025

Senate Republicans on Wednesday discussed the need to cut out waste, fraud and abuse in Medicare to achieve more deficit reduction in President Trump’s landmark bill to extend the 2017 tax cuts, provide new tax relief, secure the border and boost defense spending.

The House-passed bill would cut more than $800 billion from Medicaid and the Children’s Health Insurance Program, but some GOP lawmakers argue that other mandatory spending programs, such as Medicare, should also be reviewed for “waste” to further reduce the cost of the bill.

Sen. Kevin Cramer (R-N.D.) told reporters after the meeting that there is “a legitimate debate” within the Senate Republican Conference about whether bigger cuts can be made to federal Medicaid spending and whether federal Medicare spending needs to be reviewed as well. 

“There’s a legitimate debate about, ‘Can we do more with Medicaid? Are we doing too much with Medicaid? How much waste, fraud and abuse is there in Medicare? Why don’t we go after that?’ I think we should,” Cramer said after meeting with colleagues to discuss changes to the House-passed bill to enact Trump’s agenda.

“Some people are afraid of the topics. I’m not,” Cramer said. “In my view, this is our moment as Republicans in control of all three branches, and we ought to be going after more fiscal responsibility.”

“Some people are making that case, other people are wringing their hands,” Cramer said of the debate in the GOP conference.

Continued

Medicare is a target as Senate GOP faces megabill math issues               

By Jordan Carney, Meredith Lee Hill, and Robert King, Politico, June 5, 2025

Senate Republicans are eyeing possible Medicare provisions to help offset the cost of their megabill as they try to appease budget hawks who want more spending cuts embedded in the legislation.

Making changes to Medicare, the federal health insurance program primarily serving seniors, would be a political long shot: It would face fierce backlash from some corners of the Senate GOP, not to mention across the Capitol, where Medicare proposals were previously floated but didn’t gain traction.

But Senate Republicans are now seriously considering it as they race to pass their party-line tax and spending package before a self-imposed July 4 deadline. The idea came up in closed-door meetings this week and, crucially, some Republicans believe President Donald Trump is on board with touching the program as long as it’s limited to “waste, fraud and abuse.”

“I think anything that is waste, fraud and abuse are obviously open to discussions,” Senate Majority Leader John Thune said Thursday when asked about Medicare.

“The focus, as you know, has been on addressing waste, fraud and abuse in Medicaid,” Thune added when pressed on Medicare. “But right now we’re open to suggestions if people have them about other areas where there is clearly waste, fraud and abuse that can be rooted out in any government program.”

Sen. Ron Johnson (R-Wis.), who was among the Republicans on the Senate Finance Committee who went to the White House Wednesday to meet with Trump about the tax portion of their megabill, told reporters he believed the president was more amenable to making Medicare changes than he might have previously let on.

Continued

NIH Autism Research Funding Down 26% Under Trump, Analysis Shows

by Michelle Diament, Disability Scoop, June 2, 2025

U.S. Secretary of Health and Human Services Robert F. Kennedy Jr. says he wants to get to the bottom of surging autism rates, but a new analysis finds that the Trump administration has cut funding for such research by double digits.

National Institutes of Health spending on autism research between January and April was down roughly $31 million compared to the same period last year, according to a Reuters review of federal data.

That represents a 26% drop from the average spending during that period over the last four years, the news service said.

The spending cuts come as the Trump administration has put renewed emphasis on autism while signaling a broad shift in priorities.

Under Kennedy, the Department of Health and Human Services has announced plans for a $50 million investment into the causes of autism and a large study looking at the long-discredited connection between autism and vaccines. More recently, the agency said it will use data on Medicare and Medicaid enrollees with autism to create a “real-world data platform” to allow research across claims, electronic medical records and consumer wearables.

“HHS remains steadfast in its commitment to advancing our understanding of autism spectrum disorder,” according to an agency spokesperson. “Under Secretary Kennedy’s leadership, we are focusing on research to identify the causes of autism, and we will continue our efforts until we have a complete understanding.”

While testifying before a Senate committee last month, Kennedy dismissed the importance of looking at genetics, which has been a major focus of autism research in recent years.

“I don’t think we should be funding that genetic work anymore. I think we know a lot about the genes that provide vulnerabilities,” Kennedy said. “What we really need to do now is to find the environmental toxins.”

Continued

Unpacking the 25% HHS budget cut proposed by the Trump administration

By Noah Tong, Fierce Healthcare, June 2, 2025

A recent budget document prepared by the White House is giving new clarity over how the Department of Health and Human Services (HHS) could operate for fiscal year 2026.

The document closely mirrored other budgetary insights from earlier this year. Under the wishes of President Donald Trump’s staff, the department’s discretionary budget would be nearly $95 billion, a $32 billion decrease amounting to a one-fourth slashing.

Congress has final authority on submitting the budget, so some proposals may not be carried out, but the newest budget outline gives the clearest sense yet of the administration’s priorities. Committees on the Hill are expected to begin marking up the budget this week.

HHS leadership argues the reorg and dramatic funding changes are necessary to revive a country overtaken by chronic disease and rising healthcare costs.

The administration reiterated its desire to ax funding to the National Institutes of Health (NIH) by $18 billion to $27.5 billion. Internally, the NIH will have just eight institutes or centers, and even the centers that will not get consolidated will see diminished funding levels.

Continued

State Options for Improving Care for People with Intellectual and Developmental Disabilities  

The National Council on State Legislatures, June 4, 2025

Key Takeaways

• People with intellectual and/or developmental disabilities have worse health outcomes than their non-disabled peers.
• States can address co-occurring behavioral or physical health conditions, family caregiving, access to technology, and home- and community-based services waivers to improve care for this population.

An estimated eight million people in the United States have an intellectual and/or developmental disability (IDD), according to the Residential Information Systems Project. IDD can include common conditions such as autism, Down syndrome or cerebral palsy; rare conditions such as Williams syndrome; or unspecified diagnoses.

Co-occurring Behavioral and Physical Health Conditions

People with IDD may have co-occurring behavioral or physical health conditions separate from the underlying condition causing their disability. According to the Medicaid and CHIP Payment and Access Commission, more than 56% of adult Medicaid beneficiaries with IDD also have a behavioral health condition, and 60% have a co-occurring physical health condition.

In addition, the National Council on Disability reports that people with IDD are particularly vulnerable to poor oral health outcomes. When left unaddressed, these co-occurring conditions can contribute to poorer health outcomes.

Untreated co-occurring conditions can also be costly. A Government Accountability Office review of six states found that state Medicaid spending was 13% to 40% higher for beneficiaries with IDD and a co-occurring behavioral health condition than for those without. Similarly, the National Council notes that unaddressed oral health conditions may lead to emergency department visits that could be avoided with better access to preventive care.

States may consider requiring Medicaid to integrate or cover benefits to address co-occurring conditions. For example, Louisiana HB 55 (2022) requires Medicaid to cover dental care for people with IDD and extends Medicaid dental coverage to enrollees who reside in intermediate care facilities for people with developmental disabilities. Texas HB 4533 (2019) established a pilot program for people with IDD to receive an integrated benefit package that includes dental, behavioral health, housing, employment and other services.

Multi-disciplinary clinics may improve access to care and ensure that health care providers have the experience needed to serve the unique needs of people with IDD. For example, in Kentucky, the Lee Specialty Clinic is a multidisciplinary health center dedicated to providing services for people with IDD and offers a broad range of general health care services, dental, psychiatric, vision, podiatry and other specialty care services. The clinic is funded in part by a $750,000 general fund appropriation pursuant to Kentucky HB 6 (2024).

States may also address interagency coordination in serving people with IDD who have other physical or behavioral health needs. Texas requires its Department of Aging and Disability Services to ensure the development of programs for children with a dual diagnosis of intellectual disability and mental illness and requires the department to increase interagency coordination activities. Oregon SB 1557 (2024) requires the state health authority to adopt rules to facilitate cross-agency coordination for children who receive home and community-based services (HCBS).

Read the full article here

Abuse, neglect and death in New Jersey group homes show a crisis we must fix | Editorial

USA Today Network New Jersey Editorial Board, June 3, 2025

Key Points:

• New Jersey’s system for housing adults with intellectual and developmental disabilities is dangerous — and, too often, deadly.
• Hidden at Home has brought that stark reality — lived by hundreds of New Jersey families who worry daily about the lives and safety of their loved ones living in group homes — into high relief.
• The NJ Department of Human Services must use more of the tools it has in hand to regulate group homes.
• The New Jersey Legislature, simultaneously, must act to give regulators more tools to ensure safety in group home settings.

Continued (This is a recap of an article previously featured in the VOR newsletter)

Not all of New Jersey's group homes are dangerous. Our loved ones are thriving | Opinion

By Deb Aikey and Mona Carbona, North Jersey. com, June 5, 2025

Regarding "Hidden at Home: The group home system in NJ is flawed. See our yearlong investigation," NorthJersey. com, May 2025:

There is nothing like the sense of joy and relief you feel after seeing a family member with intellectual or developmental disabilities thrive in a group home setting. We have loved ones — son Roman and sister Heather — living in group homes that are nurturing and stable. We see Roman and Heather flourish with the help of others — living among friends, with caregivers working tirelessly to support their needs.

This sense of pride we have in their communities and their shared successes are the reason we write, and why we are so concerned by the ongoing series produced by NorthJersey. com and The Record that offers sweeping generalizations and accusations about care within group homes, and the view that the overall system is broken. We do not doubt the claims made by families, and feel incredibly sorry for their losses. How could you not? We know no system is perfect, and that no claim of neglect or abuse is ever acceptable. We applaud the state’s efforts to identify, correct and hold accountable those homes that are neglectful and abusive to their residents.

However, the lack of context around the complete story of lives well spent in group homes was almost completely ignored and does readers a disservice. We have seen firsthand the love and care offered to Roman and Heather. We receive regular and consistent communications from their caregivers, which celebrate their progress while acknowledging the challenges. And even though our family members are nonverbal, they communicate their contentment with their independent lives through their demeanor, smiling excitedly when they return to their homes.

Readers need to know there is much more to this complicated story than what they have been served thus far.

There are more than 2,000 group homes throughout New Jersey assisting about 10,000 people. Group homes employ thousands of hardworking people who care for our family members with so much empathy and love that you would think they are members of our own families.

We feel deeply for the families whose stories were reported, and we don’t overlook or discount what they have encountered. But our family members and thousands of others live comfortably and as independently as they can. They develop relationships and thrive in group homes in a way they never would have been able to at home or in isolation. The hugs that Roman offers his aides demonstrate the love he has for them. He embraces his daily routine, one that pushes him to do more, in ways our family was unable to support or hesitant to try. These interactions should be highlighted and celebrated, and not overshadowed by some bad actors. Heather celebrates birthdays and goes to dinners, movies, tricky trays and shopping with her housemates. When she needed a dress for an event, it was her house manager who took her shopping. Each day, there are countless interactions in her group home setting that allow her to live each day to the fullest — it’s more than we could have dreamed. Our families aren’t unique — we aren’t the only ones who have experienced these successes. Yet few, if any, were reported in the series.

Continued

Texas group homes for intellectually disabled are in systemic crisis, say advocates

By Paul Flahive, Texas Public Radio, June 4, 2025

Last month, employees of Maofu Home Health, a provider of group homes for people with intellectual disabilities with facilities across the state, were arrested for abusing a 29-year-old resident with severe autism less than a year after a 15-year-old boy in a Sugar Land Maofu facility nearly died.

The incident raised new red flags about long held concerns around how these types of facilities are regulated by the state.

“The reason these systemic issues persist is because the State has failed to establish a regulatory system that holds providers accountable,” said Beth Mitchell, supervising attorney for Disability Rights Texas.

Mitchell said investigations into providers are often delayed, allegations are minimized, and enforcement actions are weak.

“Providers have little incentive to improve, and vulnerable individuals continue to pay the price.” she said.

Revelations around how this system is underfunded and oftentimes unaccountable are not new.

The Arc of Texas found the average wage for someone providing care for an intellectually disabled person was $10.60. The rate was raised to $13 in the last legislative session.

Advocates have argued for years that direct service providers who can be tasked with feeding or bathing clients are paid too little, which leads to high vacancy rates. These lead to long wait lists of people hoping to access services.

“If you get the rates raised to improve quality, the rest all falls in line.” said Justin Botter, vice president of long-term care and intellectual and developmental disabilities at the Center for Health Care Services.

Botter noted the costs for incarceration and institutionalization are far higher than fixing community based care rates.

Problems with how the Texas Health and Human Services Commission (HHSC) regulates Home and Community-based Services group homes have been well documented by state district courts, where dozens of families have sued providers the past 20 years. 

Continued

Georgia - Mercer to open new medical center for adults with developmental disabilities in Downtown Macon

Video from WMAZ-13 News, via YouTube, June 5, 2025

This summer there's going to be a new medical center in downtown Macon. It will be specifically for adults with intellectual and developmental disabilities.

The facility will combine River Edge Behavioral Health’s short-term behavioral and crisis services with Mercer’s outpatient health care services under one roof.

Watch the video about this innovative health center here

New Penn Med center in Philadelphia aims to help people with Williams syndrome, develop better treatments

By Stephanie Stahl and Brad Nau, CBS News, June 4, 2025

A new specialty center opened Tuesday at the Hospital of the University of Pennsylvania in Philadelphia. 

It's one of the first in the country to help children and adults with Williams syndrome, a rare condition that makes them extra friendly.

"This center is going to be life-changing for families," said Jocelyn Krebs, director of the Armellino Center of Excellence for Williams Syndrome. 

For Krebs, this work is personal. She researched the disorder for decades and then had a child born with the condition, which she calls "an insane coincidence."

"Suddenly I went from a scientist who understood Williams syndrome very deeply in one way to a mom trying to figure out, what do you do with a kid that has these various challenges?" Krebs said.

The center includes a sensory room with different lights and playful distractions to ease anxiety, which is common for people with Williams syndrome.

Krebs' son Rhys has intellectual disabilities, a primary symptom of Williams syndrome.

In collaboration with Children's Hospital of Philadelphia, the center will provide comprehensive care and research for adults and children with Williams syndrome, which often comes with severe heart problems and social challenges.

With the right kinds of early intervention, people with Williams are able to thrive. This center will help assure that can happen and look for better treatments and new hope for brighter futures.

An estimated 20,000 to 30,000 people in the United States have Williams syndrome, which is diagnosed with genetic testing.

Read the full article here

Oregon bill to fix gap in developmental disability care heads to Kotek’s desk

By Aimee Plante, KOIN News, June 4, 2025

After passing in the Oregon House, a bill that aims to improve healthcare access for Oregonians with developmental disabilities is now headed to the governor’s desk.

Senate Bill 729 will mandate that public bodies never deny mental health assessments or treatment to patients with intellectual and developmental disabilities (I/DD).

“For too long, people with I/DD have faced gaps in care and fragmented services,” Rep. Rob Nosse (D-Inner SE Portland) said. “This bill ensures we finally hold our system accountable for delivering the care these Oregonians deserve.”

This bill would apply to the Oregon Health Authority, the Department of Human Services, the Department of Education, the Oregon Medical Board, and other health licensing agencies. It would not apply to the Oregon Youth Authority, the Department of Corrections, or the Department of Education.

Supporters of the bill say people with intellectual and developmental disabilities have long faced challenges while seeking much-needed mental health care.

SB 729 is headed to Gov. Tina Kotek’s desk, where it awaits her signature.

Read the full article here

Opinion: We must sustain funding for Californians with developmental disabilities

By Amy Westling and Tracey Mensch, Capitol Weekly, June 4, 2025

As states, organizations, and individuals across the nation continue to brace for potentially devastating cuts to Medicaid programs from the federal level, it remains vital that the California State Budget preserve funding that supports critical and necessary services for more than 450,000 Californians with developmental disabilities.

As the only developmental disabilities entitlement in the Country, it has been embedded in California’s fabric for more than 50 years that we have a sustained commitment to support our community of individuals with developmental disabilities through The Lanterman Developmental Disabilities Services Act. Supporting people with developmental disabilities and their families has been a pillar of California’s responsibility, in good financial times and in bad.

With the recent State Budget May Revise release, there is an unfortunate clarity around the programs and services that are on the chopping block with a $12 billion budget deficit. And while the situation is less dire than last year’s substantial deficit, there remains considerable concern around impacts to the developmental disability community. Proposed May Revise program cuts for our community would significantly cut the incomes of family caregivers while creating potential gaps in care, limit the availability of individually tailored services, and eliminate professional development and pay increases meant to help frontline staff turn supporting people with disabilities from a short-term job into a career. This coupled with potentially disastrous federal cuts to key programs and services to this same population, creates a perfect storm for uncertainty and insecurity for nearly half a million Californians.

These Californians are served and supported through the state’s developmental services system, including 21 regional centers. Centers are interdependent community-based organizations that act as the hub of the system. They are partners for people with developmental disabilities and their families, connecting them to services to meet a lifetime of changing needs. The regional centers are where service starts.

As individuals who have been deeply involved in the regional center system for years in different capacities, the perspectives and insights we have on the impacts that the system and individuals are facing gives us considerable concern and calls for the continued education of elected officials so they understand the real-life impact of their decisions on people with disabilities.

And while we understand the financial realities and tough decisions facing the State, there must also be recognition from elected officials about how critical it is to preserve funding in less than certain times. Just because government resources decline, doesn’t mean the needs of those living with disabilities also decline.

Now is the time to keep the promise to those who need it most. As California policymakers and the Administration continue to look at programs to cut for savings to the General Fund and as they get closer to solidifying plans for the final budget which will be released in mid-June, we must remind them of the population that relies on state funding to live a productive and fulfilling life in their communities.

Contnued

Care workers gather at Maine State House to join call for wage increases

By Joe Lawlor, Central Maine. com, June 5, 2025

Shawna Ferris said her finances are stretched so thin that she’s had to purchase heating oil 5 gallons at a time.

Ferris, a 44-year-old from Mattawamkeag, was one of dozens of direct care workers who joined House Speaker Ryan Fecteau, D-Biddeford, at a State House news conference Thursday to urge lawmakers and the governor to approve cost-of-living increases for Maine’s direct care workforce as part of the state’s new two-year budget.

“Their pay should reflect the hard work these people put in every single day,” said Fecteau, whose mother is a direct care worker.

Direct care workers include nursing home employees, people who staff group homes for those with mental health or intellectual disabilities, in-home respite care providers, and any number of jobs to help people with daily living tasks.

The COLA increases vary by year, but are tied to inflation, and would have been 3.5% in 2025. The estimated cost to the state budget — through the federal-state Medicaid program — would be $84 million over the two years. But the state funding would also draw down $137 million in federal funds that would go to about 24,000 direct care workers.

The workers are paid by the private employers, but the ability of the nonprofits to increase wages is directly tied to whether the state boosts Medicaid reimbursement rates to pay for raises.

Ferris works in group homes for adults with intellectual disabilities, and she said the pay is so low that she is struggling to earn enough to pay for groceries.

“Every penny counts,” said Ferris, who makes $20 per hour working full-time. “I have never thought about leaving my job, because I love my job so much and the clients depend on us. But I have thought about picking up a second job.”

The low pay is contributing to a severe shortage of such workers as employees are lured away by higher wages in less demanding service sector jobs.

Shannon Marquis, who operates a group home for adults with intellectual disabilities for the Independence Association in Brunswick, said people are going to leave the direct care workforce if they don’t get raises over the next two years. That means group homes will close.

“You can make more money at McDonald’s right now than what we can pay,” Marquis said. “The pay does not match the quality of services that the people provide. If there’s no money for raises, where are these people going to go?”

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.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. 

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)

Accelerating Kids' Access to Care ActTo 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.

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)

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



H.R.2598 - Rep Jared Huffman (D-CA)

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

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.  

VOR OPPOSES:

H.R.1 - The One Big Beautiful Bill Act - Rep. Jody Arrington (R-TX) This bill contains provisions to make drastic cuts to Medicaid. The consequences of these cuts could impact HCBS services, further destabilize the DSP workforce, and even impact ICF services. In addition, the bill would add $2.4 billion to the deficit over ten years, which could result in further cuts to safety net programs, including Medicaid, Medicare, and Social Security, in the years to come.

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) amd sheltered workshops for indiviiduals with I/DD and autism.