June 20, 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.

Sr. Rosemary Connelly, RSM

February 23, 1931 - June 19, 2025

It is with great sadness that we share that Sister Rosemary Connelly passed away last night after entering hospice a short time ago.

Sister Rosemary devoted her life and her faith to people with intellectual and developmental disabilities and autism. She developed the community that has become the Misericordia of today – a loving and caring environment that provides a full continuum of care and life-enriching programs for individuals from diverse racial, religious and socioeconomic backgrounds with a wide range of abilities.

For more than 50 years, Sister Rosemary guided Misericordia through enormous growth, touching and ultimately changing the lives of thousands of children, families and supporters in the process. She was a visionary who devoted her life to the community that has become the Misericordia of today – a loving and caring environment that provides a full continuum of care and life-enriching programs for individuals from diverse racial, religious and socioeconomic backgrounds with a wide range of abilities. Sister Rosemary was instrumental in developing a compassionate and holistic approach to caring for people with intellectual and developmental disabilities and set the tone for Misericordia, believing in the potential of each and every individual and in their right to life and one worth living. She oversaw a far-reaching program that has become one of the nation’s leading communities for children and adults with intellectual and developmental disabilities and includes not only its 600 residents of Misericordia, but also an Outreach Program, 1,200 employees and thousands of volunteers both on- and off-campus.

Sister Rosemary will be greatly missed by all who knew her, and by the entire community of Misericordia. She worked tirelessly to create a unique community that spanned the individuals on the I/DD spectrum.

An obituary from the Chicago Sun-Times may be found here

Sister Rosemary's formal obituary may be found here

VOR 2025 State Reports

have been posted on our website

www.vor.net

If you would like to submit a report on the state of I/DD and autism services in your state, please send your report to

info@vor.net

The Senate Finance Committee released its recommendations for the Reconciliation Bill earlier this week. For the most part, it is considerably worse for people with I/DD and autism.

These cuts will be borne hardest by people in HCBS settings, by family caregivers, and by those who rely on rural hospitals.

While the Senate Finance Committee's text does offer protections for people in institutional settings like ICFs and SNFs, we have to question whether or not those protections actually exist. State governors will be tasked with enacting any cuts that come down from the federal government, not the people who choose to make the cuts, and states have a way of closing down more costly facilities when faced with a budget shortage.

Moreover, the increase to the national debt that will be created by The One Big Beautiful Bill will make it likely that therre will be proposals for further cuts to Medicaid, Medicare, and Social Security in the years to come.

VOR remains opposed to any and all cuts to Medicaid programs. We encourage our members to speak to their elected officials about how these cuts will hurt our loved ones and our families.

Chairman Crapo Releases Finance Committee Reconciliation Text

Press release from the United States Senate Committee on Finance, June 16, 2025

U.S. Senate Finance Committee Chairman Mike Crapo (R-Idaho) today released legislative text within the Finance Committee’s jurisdiction for inclusion in Senate Republicans’ budget reconciliation bill.

Click HERE to view bill text.

Click HERE for a section-by-section.

Click HERE for a bill overview.

(We recommend the overview, but if you wish to read the text the Medicaid section starts on page 423)

Millions Stand to Lose Health Coverage Under Proposed Medicaid Cuts, Study Says

By Dennis Thompson, US News and World Report, June 20, 2025

About 7.6 million Americans could lose their health insurance if the “One Big Beautiful Bill Act” passed by the U.S. House of Representatives becomes law, a new study says.

As a result, more than 16,600 people a year will die needlessly, as medical treatment could have prevented their demise, researchers estimated in the Annals of Internal Medicine.

“The Medicaid cuts in the House Bill will strip healthcare from millions of Americans,” lead researcher Dr. Adam Gaffney said in a news release. He’s an assistant professor of critical care medicine at Harvard Medical School.

“In the ICU, I see what happens when patients do not get the regular care they need: They get sicker, sometimes gravely or even mortally ill,” Gaffney said. “If the Senate goes along with the House’s Medicaid cuts, hundreds of safety-net hospitals and clinics will be forced to close or limit their care, and medically preventable deaths will soar.”

In fact, the U.S. Senate has proposed billions of dollars more in Medicaid cuts than the House version of the bill, The New York Times previously reported.

Even more could lose their insurance and die from preventable causes than estimated in this study, if the Senate cuts are added to those in the House's legislation.

For their study, Gaffney and his colleagues analyzed the version of the bill passed in May by the House and now under consideration in the U.S. Senate.

The researchers identified six potential Medicaid cuts that would each reduce expenditures by at least $100 billion over 10 years, according to analysis by the non-partisan Congressional Budget Office.

The cuts include reductions in Medicaid matching funds; partial rollback of the Affordable Care Act’s Medicaid expansion; caps on per person Medicaid spending; Medicaid work requirements; a freeze for taxes on health care providers to help fund Medicaid; and repeal of a rule enacted under former President Joe Biden that made it easier for people to remain eligible for Medicaid.

The team then estimated the potential effects of these cuts, based on earlier research that analyzed the effects of previous Medicaid reforms.

All told, these cuts would increase the number of uninsured by between 600,000 and 3.9 million and cause an annual increase in preventable deaths of between 651 and 12,626 people, researchers estimate.

If the current House bill is enacted without changes, researchers estimate that:

• 7.6 million people would lose their health coverage.
• 1.9 million would lose their personal doctor.
• 1.3 million would have to forego needed medications.
• More than 380,000 women would go without mammogram screening for breast cancer.
• 246,000 people would be turned away from health care due to medical debts.
• More than 16,600 preventable deaths would occur.

Continued

The hidden casualties of Medicaid cuts: America’s family caregivers 

By Michelle Lujan Grisham and Jason Resendez, The Hill, June 20, 2025

(Michelle Lujan Grisham is governor of New Mexico. Jason Resendez is president and CEO of the National Alliance for Caregiving)

In Arroyo Seco, N.M., Vanessa Herrera routinely inserts a needle into her 6-year-old son’s chest, administering life-saving medication for his rare bleeding disorder. This weekly ritual, made possible by Medicaid, represents the thin line between health and catastrophe for millions of American families.

For Herrera, a single working mother of three, the math is brutally simple: “Without Medicaid, we would not be able to afford it,” she says. “We are scared to lose it, because I don’t want to lose my son.”

Across America, more than 53 million people are family caregivers like Herrera’s — parents supporting children with rare diseases, adult children assisting aging parents, spouses tending to partners with chronic illnesses. And more than 4 million family caregivers rely on Medicaid for their own health care coverage.

This invisible workforce forms the foundation of our nation’s long-term care system. Now, with the House passing a budget bill that slashes more than $1 trillion from Medicaid and the Senate Finance Committee advancing similar devastating cuts, these essential caregivers fear for the already-fragile support system that enables their critical work. 

As a governor managing the frontline impacts of health care policy on American families, and as someone who has also been a family caregiver, I have deep concerns about how these proposed cuts would unravel the already fragile support system that makes caregiving possible for millions of families. This isn’t merely a budgetary abstraction. It is a looming humanitarian crisis with faces and names attached. 

Take New Mexico, where approximately 40 percent of residents rely on Medicaid — the highest per-capita coverage in the nation. The proposed cuts would eliminate up to $2.8 billion in federal funding in the first year alone.

New Mexico isn’t alone. In 15 states, at least one-fifth of working-age adults in rural areas depend on Medicaid. Tellingly, eight of these 15 highly vulnerable states went for President Trump in the last election — a stark reminder that health care security transcends partisan divides. 

For family caregivers, Medicaid often represents the only meaningful support available. As the primary funder of home and community-based services, it helps 4.5 million people with complex needs remain in their homes rather than face costlier institutional care. These services include respite care that gives exhausted caregivers essential breaks, training programs that teach specialized caregiving skills, and self-directed services that allow Medicaid enrollees to hire family members as caregivers. 

The proposed cuts would unravel this safety net in important ways.  

Continued

Hospitals stunned by Senate GOP’s Medicaid plan               

By Robert King, Caitlin Oprysko, Jordain Carney, and Amanda Chu, Politico, June 17, 2025

One of the most powerful lobbies in Washington is redoubling its efforts to avoid a cut to Medicaid payments in the GOP’s megabill.

Hospital executives weren’t happy last month when the House included a provision in its version of the bill freezing a loophole states have used to boost payments to hospitals serving the low-income patients enrolled in Medicaid. Hospitals have long enjoyed deference from lawmakers — since they both care for and employ their constituents.

But they were infuriated when Senate Republicans on the Finance Committee released their version of the bill Monday. Their proposal went even further than the House measure in curtailing the ability of states to impose taxes on providers. States have used those taxes to gain a larger federal Medicaid contribution, which they have then directed back to hospitals with higher reimbursements.

The Senate’s proposal would lower the amount the 40 states that have expanded Medicaid under Obamacare can levy in provider taxes from 6 percent to 3.5 percent. It has hospital lobbyists painting a bleak picture of their financial prospects in a last-ditch effort to change senators’ minds.

“No senator wants to be the reason their local hospital shutters its doors, and now is their opportunity to stop that from happening,” said a source familiar with hospital industry thinking, granted anonymity to speak freely on strategy.

More than 250 hospital leaders flew into Washington on Tuesday to urge senators to preserve Medicaid as part of an American Hospital Association lobbying campaign. The association spent almost $8.5 million on lobbying in the first quarter of the year, a high water mark dating back almost two decades.

Continued

Senate GOP Plan Spares Nursing Homes from Provider Tax Cuts, But ‘Smaller Medicaid Funds Pie’ Looms

By Zahida Siddiq, Skilled Nursing News, June 17, 2025

Senate Republicans are pushing a proposal to scale back Medicaid provider taxes to help fund a sweeping budget package – but nursing homes and intermediate care facilities would be exempt from the cuts.

A draft from the Senate Finance Committee proposes gradually reducing the maximum provider tax rate in Medicaid expansion states from 6% to 3.5% between 2027 and 2031. The policy shift aims to generate significant federal savings by curbing Medicaid spending growth, a long-standing conservative goal.

Most states use provider taxes to fund Medicaid, relying on matching federal dollars that can reach up to 90%, with reduction or caps on provider taxes not being favored by the nursing home sector.

This proposed move by GOP Senators is a key departure from the House-passed bill – which would have frozen the provider tax cap at 6% for all providers. The Senate plan protects nursing homes from the rollback. That distinction could shield nursing home operators from financial strain while shifting cost pressures to other health care sectors.

Michael Bassett, senior vice president of government relations at the American Health Care Association and National Center for Assisted Living (AHCA/NCAL), welcomed the move in an emailed statement to Skilled Nursing News.

“We appreciate the Senate’s recognition that nursing homes and intermediate care facilities need to be shielded from potential provider tax reductions, a clear signal that this Medicaid program is essential to funding critical care for our nation’s seniors and individuals with disabilities,” Bassett said, adding, however, “States continue to struggle with their Medicaid budgets, and we will continue to work with Congress as this process moves forward.”

‘A smaller Medicaid funds pie’

Mollie Gurian, vice president, policy and government affairs at LeadingAge, the association of nonprofit providers of aging services, told SNN that nursing homes still stand to be negatively affected even if they are exempt from the Senate proposal on provider taxes. After all, provider taxes are but one mechanism by which states can collect federal funds to support their Medicaid programs.

“Starting in 2027, for expansion states, the hold harmless threshold decreases by 0.5% a year until 2031 when the hold harmless threshold would be 3.5%. While nursing homes and intermediate care facilities are excluded from this provision, allowing states to maintain provider taxes on them to between 3.5% and 6%, it would be incorrect to conclude that that exclusion means nursing homes will not be harmed financially as a result,” she said.

Some states use taxes on certain health care providers to help fund nursing facility payment programs, including quality and access incentives. All provider tax revenue is pooled into a single state funding source, which supports various services like nursing homes and home- and community-based care, Gurian explained.

“Therefore, if one stream of money is reduced – and others hold steady – the whole amount is decreased as well,” Gurian said.

Continued

Americans want Medicaid and food stamps funding maintained or increased, AP-NORC poll shows

By Linley Sanders, Associated Press, June 16, 2025

As Republican senators consider President Donald Trump’s big bill that could slash federal spending and extend tax cuts, a new survey shows most U.S. adults don’t think the government is overspending on the programs the GOP has focused on cutting, like Medicaid and food stamps.

Americans broadly support increasing or maintaining existing levels of funding for popular safety net programs, including Social Security and Medicare, according to the poll from The Associated Press-NORC Center for Public Affairs Research. They’re more divided on spending around the military and border security, and most think the government is spending too much on foreign aid.

The poll points to a disconnect between Republicans’ policy agenda and public sentiment around the domestic programs that are up for debate in the coming weeks.

Here’s the latest polling data on how Americans view federal funding: 

Most want Medicaid and SNAP funding increased or kept as is

Many Americans see Medicaid and food assistance programs as underfunded — even as Congress proposes significant cuts to Medicaid and food and nutrition assistance programs — and few say “too much” money is going to these programs.

About half of U.S. adults say “too little” funding goes to Medicaid, which is a government health care coverage program for low-income people and people with certain disabilities. Nearly half, 45%, say food and nutrition assistance programs like food stamps, SNAP or EBT cards are underfunded, according to the poll. About 3 in 10 U.S. adults in each case say those programs are receiving “about the right amount” of funding, indicating that most Americans likely do not want to see significant cuts to the two programs.

About 2 in 10 say Medicaid is overfunded, while about one-quarter say that about food assistance programs.

Republicans are especially likely to say “too much” is spent on food and nutrition assistance programs when compared with Democrats and independents — 46% of Republicans say this, compared with about 1 in 10 Democrats and independents.

When it comes to Medicaid, fewer Republicans, about one-third, say the government is spending “too much.”

Continued

A Connecticut mother found bruises on her nonverbal daughter. Doing nothing was not an option. Here is what she did.  

By Livi Stanford, The Hartford Courant, June 20, 2025

Adrian Benjamin saw her daughter’s lacerations and wounds on her face and was told her daughter fell but something did not seem right.

Zoe Benjamin, 28, who has profound autism and is nonverbal, could not tell her mother what happened in the group home in Wethersfield where she lives. The home is owned by Harc of Hartford, which receives funding from the state Department of Developmental Services.

Her mother would later learn that her daughter was allegedly assaulted multiple times in the early morning hours of Oct. 13 by a staff member. Her nose was broken.

“When your child is hurt, you want answers and solutions immediately,” Adrian Benjamin said.

This, coupled with another incident four years earlier, led Benjamin to reach out to legislators, asking for help in protecting people like her daughter by increasing transparency and accountability at the Department of Developmental Services.

“The process is not transparent,” she said, explaining that there is not enough accountability in the system to ensure people like her daughter are protected.

Her story and other families’ similar experiences inspired legislation that passed this session.

“After I heard what happened to Zoe, I wanted to go and visit the group home and talk to staff and talk to Adrian and understand what went wrong and what we can do better,” said Sen. Matt Lesser, D-Middletown, co-chair of the Human Services Committee, which introduced the bill. “The legislature has not taken a close look at abuse and neglect in the DDS system in a little while. We wanted to strengthen our data collection, our reporting requirements to ensure we have a real handle on what is going on. Part of it is a law enforcement issue and part of it is underfunding (of staff).”

The two-year state budget directs millions to raise wages of staff, Lesser said.

The bill, HB 7108, sets reporting and other requirements related to people with intellectual and developmental disabilities and autism spectrum disorder, according to the nonpartisan Office of Legislative Research analysis of the bill.

The bill requires the Department of Developmental Services to “report on abuse and neglect reports filed and investigations conducted under existing laws and review related DDS policies and procedures, report on its use of funds appropriated for its program and establish a working group to study recommendations on the Southbury Training School,” according to the bill’s analysis.

The bill, which unanimously passed the House and Senate, is awaiting Gov. Ned Lamont’s signature.

The bill also allows the Appropriations, Human Services and Public Health committees to annually hold a joint informational hearing to review DDS and DSS efforts to ensure the safety and quality of care for people with disabilities, according to the bill’s analysis.

Continued

Maine - Gov. Mills signs bill eliminating planned use of restraints for adults with developmental disabilities

By Esta Pratt-Kielley, Maine Public, June 13, 2025

Gov. Janet Mills signed a bill on Thursday that would eliminate the planned use of restraints for adults with intellectual disabilities and autism.

“It’s just a huge civil rights victory for people with developmental disabilities in Maine, probably the one of the biggest that I've ever seen,” said Staci Converse, managing attorney and leader of Disability Rights Maine’s developmental disabilities team.

Planned use of restraint refers to situations where a person is restrained as part of their behavior management plan in educational, vocational, residential, and community agencies. Converse said planned restraints are different from restraints in emergency situations, which the law still allows.

“We're not talking about those emergency circumstances,” Converse said. “No one is asking [providers or caregivers] to sit there and watch someone try to run in front of a car and not stop them. Of course, you're going to stop them, right? Just like anybody else would, because it's an emergency. But you can’t prevent someone from leaving their house because you have a fear in the future they might run out in front of a car.”

Converse said planned restraint in adults with developmental disabilities is a form of discrimination, and sometimes can amount to physical assault.

“That’s not allowed for children, that's not allowed for people with mental health labels, that's not allowed for people with brain injury, just people with developmental disabilities,” Converse said.

The bill, LD 769, was submitted by the Department of Health and Human Services Office of Aging and Disability Services. The Department said in testimony at public hearings in March that the measure would also improve access to behavioral health services and streamline the review process of behavioral support plans for adults with developmental disabilities.

Continued

Dozens of Texans with disabilities to lose housing as Texana shuts group homes

By Luke Jones, ABC-13 Eyewitness News, June 17, 2025

Fourteen group homes serving those with developmental disabilities will close in September as the operator cites a shortage of state funding.

The group homes, operated by Texana Center, are located in six counties west and southwest of Houston, and are home to a combined 54 people.

"I cried 'cause I couldn't believe it," said Sarah Mohammed, who's autistic son, Sami, has lived in Texana Center group homes for most of his adult life.

"Change is hard for typical people. Change is especially hard for somebody on the autism spectrum," Mohammed said.

Texana Center said its group homes have been losing about $3 million a year for the last decade. That's with the $10.60 an hour the state reimburses the group for its employees.

Lawmakers recently voted to the raise the reimbursement rate to $13, but Texana Center says it's not a big enough increase.

"It's still not enough," Texana Center CEO Shena Ureste said. "There are too many other positions out there for these employees in the retail business where they can go make more money."

According to the Private Providers Association of Texas, a third of caregiver jobs are vacant.

Texana said its employees would need to make somewhere in the ballpark of $19.60 an hour, which is more in line with what state-employed caregivers make.

Yet other providers continue to operate, even at the $10.60 an hour rate.

"There is no difference in terms of the reimbursement. For Texana and the benefits that we provide, there is a pretty big difference," Ureste said.

Ureste said that scaling back those employees' benefits is out of the question and would only make it more difficult to recruit.

Continued

Arkansans with disabilities showcase talents at Blue Umbrella Farmers Market

By Payton Dhooge, KATV ABC-7, June 18, 2025

Residents from the Arkansas Department of Human Services Development Centers showed off their talents at the annual Blue Umbrella Farmers Market on Wednesday.

The event featured residents with intellectual and developmental disabilities from the five Human Development Centers, who sold produce, plants, handmade crafts, and more.

The market is an extension of the Blue Umbrella, a gift shop located inside the DHS Central Office that sells handmade items by Arkansans with developmental and intellectual disabilities.

Jennifer Brezée, Director of the Division of Developmental Disabilities, emphasized the importance of providing opportunities for people with varying abilities.

"It's really important to us that folks here with any level of ability get the opportunity to work and participate in the community, that's really important to us.

Just get a chance like we all do to do the things that make us happy," she said.

Continued

I received an anonymous letter yesterday, asking me to post that Fox News' Greg Gutfeld regularly invokes the word "Retard" on his program to insult people and get laughs. I have never seen Mr. Gutfeld do this, but there is a growing trend among certain individuals to bring this word back into modern parlance. Such usage is disgraceful, and like any bigoted language, it only reflects the ignorance of the user and of those who exult in its use.

Below is an article I received earlier in fhe day, from the Arc.

The Truth About the R-Word, From the People It Hurts Most

By Jackie Dilworth, The Arc, June 18, 2025

The R-word is everywhere again. It’s showing up on social media, in schools, in entertainment, in the media, and in everyday conversations.

People throw it out casually as a joke or a way to tear someone down. But for people with intellectual and developmental disabilities (IDD), it has never been “just a word.” It’s a slur—a word used to devalue their worth and humanity.

The disability community has fought for decades to end the use of this word. While we’ve made real progress, its resurgence today is a warning: progress is fragile. Every time this word is spoken, it reinforces outdated and harmful ideas about who belongs, who matters, and who is worthy of respect.

This isn’t a minor slip in language. It’s a sign that empathy, dignity, and basic decency are being lost—and that impacts all of us. Choosing not to say the R-word is a start, but it’s not enough. We need more people to understand why the R-word is offensive, why it’s still harmful, and why it must stop.

Listen to people with IDD who have lived with the weight of this word their entire lives:

Continued, with testimonials from those who have been harmed by this slur

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.