July 25, 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.

Your Member of the House is back in District!

The House of Representatives shut down two weeks early this summer, to avoid a vote about opening an investigation into the Jeffrey Epstein files.

Contact your Representative's office now, and ask to meet to speak about how to protect our loved ones with I/DD and autism.

Ask them to support CHOICE, and to strengthen protections for all forms of residential care

and all opportunities supporting employment and meaningful daily activities.

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Your Senators will be in state in August!

Now is a good time to make appointments with your

Members of the House and Senate

and arrange for them to tour your loved ones' homes and workplaces!

Find your member of the House here

Find your Senators here

VOR Podcasts!

Episode 3 - Joanne St. Amand pt. 1

available now - click here

VOR's Casey Henry and Brenna Redfearn continue their new series!

Click here for Episode 1

Click here for Episode 2

More podcasts coming soon!

The 35th Anniversary of the ADA

The Americans with Disabilites Act was signed into law by president George H.W. Bush on July 26, 1990. The ADA has been a powerful force for change in this country. Let us hope we can continue to improve the lives and opportunities for all people with disabilities, regardless of whether they are physical, sensory, medical, behavioral, or intellectual in nature.

The U.S. Department of Health and Human Services will be hosting a presentation about the 35th anniversary of the ADA

Monday, July 28, from 10 am to 12 pm EDT

Click here for more information

As Nation Marks 35th Anniversary Of The ADA, Advocates Warn Of Backslide

By Michelle Diament, Disability Scoop, July 24, 2025

More than three decades after passage of the landmark Americans with Disabilities Act, advocates worry progress is slipping amid attacks on disability rights and uncertainty over the future of services and supports.

Saturday will mark 35 years since President George H.W. Bush signed the ADA. The legislation, which passed with broad bipartisan support, was the first comprehensive civil rights law in the world for people with disabilities, barring discrimination in education, transportation, employment, voting and other areas of public life.

The ADA anniversary comes just weeks after President Donald Trump signed legislation approving the largest cuts in history to Medicaid, which serves as the backbone of the nation’s disability services system. At the same time, advocates note that the Trump administration is working to dismantle the U.S. Department of Education, change rules related to physical accessibility and push funding cuts for some disability programs.

“These are not isolated developments,” said Katy Neas, CEO of The Arc of the United States. “Together, they show a national, coordinated pattern of erosion. Protections are being stripped. Services are being cut. And people with disabilities are being pushed back out.”

Neas, who was a young Senate staffer in 1990 and worked on the ADA, said the law was designed to prevent this scenario.

“I’ve never seen a more urgent moment than this one,” she said.

While the stakes may be higher, disability advocates have always had to fight, Maria Town, president and CEO of the American Association of People with Disabilities, said at a recent event her group hosted with the Bipartisan Disability Caucus for lawmakers and disability rights leaders to mark the ADA anniversary.

“When I think about the ADA, among the many things I think about is the realization that from the moment it passed, it required education and defense. In the 35 years since its passage, almost every Congress has introduced a piece of legislation to weaken the ADA,” she said. “Although today looks very different than 1990, we are going to use the tactics we have at hand to continue to mobilize, to continue to educate, to continue to defend the Americans with Disabilities Act.”

The key to making that happen will be uniting people with disabilities, according to Tony Coelho, who sponsored the ADA as a member of Congress.

“The problem is our community is not together,” Coelho told those gathered at the event. “And so while we blame everybody else, I want to say very openly that our community has to get back together like we did on the ADA, back together like we did on the ADA Amendments Act and raise our voices to get done what we want. Right now there are attacks as Maria pointed out. If our community will rise up, I always say it comes from the bottom, not from the top. And if we as a community rise up, those folks in power will pay attention.”

Read the full article here

VOR has always advocated for increasing, improving, and stabilizing the workforce of caregivers who attend to the daily needs of people with intellectual and developmental disabilities, autism. mental illnesses, and the aging community.

Like the disability community, the caregiver workforce not a monolithic group. It consists of people with diverse skills and training, performing a variety of tasks. They range from seasoned, certified health care professionals to those who attend to custodial duties and provide transportation specifically to people with disabilities. Some are unionized, others are not. The workforce includes paid workers, volunteers, interns, and family caregivers of all ages.

At VOR, we view this workforce as a whole. Shortages in one area affect the entire community. While the workforce has long faced challenges and been on the verge of collapse, new problems have arisen recently that are likely to further strain this important sector of dedicated workers.

Trump’s Immigration Crackdown Hits Senior Care Work Force

By Madeleine Ngo, The New York Times, July 18,2025

President Trump’s immigration crackdown is beginning to strain the long-term care work force, raising concerns about how the effects could ripple across the nation’s senior population.

Providers that operate nursing homes and home care agencies say they have lost staff members as the Trump administration has moved to end deportation protections for hundreds of thousands of migrants with temporary legal status. Republican critics of those programs say that they have allowed migrants to stay longer than intended, and that ending them “restores integrity” in the country’s immigration system.

But the long-term care industry already faces persistent challenges in recruiting workers. Providers say the reduction in staff could threaten the quality of services they are able to offer to the nation’s senior population. Some said they would have to raise wages to attract more workers to fill positions, and they were set to pass on cost increases to people receiving care.

The issue underscores the critical role that foreign-born workers play in the long-term care industry. Immigrants make up about 28 percent of the work force directly providing that care, according to an analysis of Census Bureau data from KFF, a health policy research group. In comparison, foreign-born workers account for about 19 percent of the entire U.S. civilian labor force.

Katie Smith Sloan, the president of LeadingAge, an association representing nonprofit aging services providers, said the Trump administration’s immigration policies were already starting to disrupt facilities across the country as providers moved to terminate some caregivers in recent weeks. She said some employees had stopped showing up at work out of fear for themselves and their families.

The biggest impact so far has stemmed from the Trump administration’s decision to end various programs that grant migrants temporary legal status, which authorizes them to live and work in the United States. In late May, the Supreme Court allowed the Trump administration, for now, to end a humanitarian program that gave temporary residency to more than 500,000 people from Cuba, Haiti, Nicaragua and Venezuela.

Ms. Smith Sloan said the impacts across the long-term care industry could become more pronounced as the administration ramps up efforts to restrict migrants from entering the United States. If there are fewer immigrants to fill positions, that could lead to nursing homes and assisted living facilities shutting down wings or closing their doors entirely, she said. Cuts to Medicaid, which were included in the domestic policy bill that Republicans recently passed, could further strain providers, she added.

“The services just won’t be available for people when they need them because we won’t be able to staff them,” she said.

Read the full article here

Parents Were Paid To Care For Their Children With Disabilities. Those Days Are Over

By Sarah Cutler, Idaho Statesman via Disability Scoop, July 23, 2025

From 8 a.m. until late at night, Nathan Hill performs countless tasks for his 16-year-old son, Brady. Some of the tasks are small — things most people “take for granted that our kids can do,” Hill said, like popping Brady’s pimples when he gets acne outbreaks.

Others could mean the difference between life and death. A failure to properly maintain a tube into Brady’s windpipe, Hill said, could be fatal.

The Meridian teen was diagnosed with brain cancer as a baby and suffered a stroke during surgery, leaving him with a permanent disability, Hill told the Idaho Statesman. In the years since, he’s needed help through hourslong routines every day. In the morning, Hill helps Brady use the toilet, take a sponge bath, get dressed and eat through a tube entering his stomach. At night, Hill hooks Brady up to a ventilator and other machines to help him breathe.

For years, the family tried to patch together care for Brady however they could. Soon after Brady was diagnosed, Hill left his job as a remodeling contractor to find flexible jobs that would allow him to work from home, where he could oversee a revolving door of outside caregivers. When they call in sick or quit after a few weeks — a common occurrence, he said — he steps into the breach, often pulling all-nighters to regularly suction and clean Brady’s mouth and nose to keep him from aspirating while using his ventilator. Such an event could land him in the hospital with pneumonia, Hill said.

Medicaid paid for those outside caregivers, but it wouldn’t pay for parents like Hill to do the work themselves — until the COVID-19 pandemic hit. In 2020, Medicaid made an exception to its rules, allowing family members to get paid to care for their children with disabilities or spouses. Finally, Hill said, he could provide his son with consistent, high-quality care and greater privacy, without outsiders coming in and out of their home at all hours.

Now, those days are over. The Idaho Health and Welfare Department shuttered the program July 15, prompting families to scramble for alternative care.

In a December letter to the Centers for Medicare and Medicaid Services, Health and Welfare officials asked the federal division to revoke the permission it granted for parents in the state to serve as paid caregivers. Idaho officials in their letter said the program’s cost ballooned from about $6 million in 2022 to over $24 million in 2024, which they attributed in large part to parents committing fraud.

The department “cannot continue to operate a program with such high rates of suspected and known fraud and abuse,” its 2024 letter read. “In the role as stewards of taxpayer dollars and oversight of this program serving vulnerable children and adults, the (department) has determined the most appropriate action is to move to terminate this expenditure authority.”

Agency officials have since backtracked on that accusation in statements to the Statesman, and instead linked the rising cost to an increase in parents enrolling in the program. Spokespeople for Health and Welfare said the agency can’t attribute the increased cost to “fraudulent billings alone,” but that whatever the cause, the rising costs were unsustainable.

Idaho has for years had a shortage of direct care workers — those who provide in-home medical care and help with bathing, getting dressed and eating — compared with the national average, according to a 2022 report by the Legislature’s nonpartisan Office of Performance Evaluations. As a result, parents say, they are struggling to find outside caregivers to replace themselves once the program ends.

Hill had advocated for over a decade for Medicaid to change its policy, arguing that parents were the ones providing their children’s care whether they were paid or not. But without the income, they had the added stress of holding down a day job while searching for and training outside caregivers of inconsistent quality. Forcing parents to hire outside caregivers “is a racket,” Hill told the Statesman, because parents ultimately end up providing the care anyway.

“You can’t even hire enough nurses,” Hill said. “They don’t exist.”

Medicaid exemption aimed to address worker shortage

In its initial support for the program, Idaho’s health department acknowledged the state’s shortage of direct care workers. Health officials framed the program as a creative way to try to solve a longstanding problem. But the number of such workers in the state rose 10% from 2022 to 2024, and the health agency “stands ready to assist” families having trouble finding providers, Health and Welfare spokesperson AJ McWhorter told the Statesman by email.

The department has also urged parents to find creative solutions, including splitting their child’s care among multiple provider agencies or trading care with another family in the community, McWhorter said. Hill, for example, could care for another family’s child while that family cares for his son.

Industry-wide, direct care workers turn over at a rate of 125% a year, said Andrew Rail, the CEO of 1 Assist Care, an Idaho agency for direct care workers. That means that if his agency hires 100 people in a year, 125 will quit in the same period. Three-quarters of direct care workers in Idaho who were actively looking for a new job said higher pay would stop them from leaving, the Office of Performance Evaluations found.

“There is a caregiver crisis,” Rail said.

Read the original article in the Idaho Statesman here

Tragedies highlight caregiver shortages

Health and human services fields struggle to attract workers.

By the Editorial Board of the Boston Globe, July 21, 2025

Greylock, a Springfield group home for children in state custody, closed after a worker, Xavier Cruz, was indicted for allegedly sexually assaulting a teenage resident, according to a Boston Globe investigation.

Cruz had been hired while on probation for stealing jewelry from a senior at a home where he previously worked.

The story raises questions about whether state requirements for background checks of residential facility employees are adequate and followed. Cruz wasn’t the only questionable hire: 30 workers quit or were fired after a finding of misconduct over five years at the Northeast Center for Youth and Families, which ran three Massachusetts group homes including Greylock.

But another important question is why Cruz and all those workers were hired in the first place.

And the answer is likely understaffing, reflecting a statewide problem.

The Globe reporters found that Greylock often struggled to maintain state-required staffing ratios. While Cruz was allegedly abusing a teenager, the other worker on duty was asleep while working a triple shift.

For years, companies seeking staff in health care, human services, child care, and other direct support professions have struggled to recruit and retain qualified professionals. The results can be devastating to the vulnerable populations they serve.

Sarah Segura, co-executive director of Friends of Children, an advocacy group for foster children, said entry-level group home jobs often have minimal requirements for experience and education and low pay. That translates to less qualified applicants and high turnover. “You have individuals coming in to do a job they’re not well prepared to do, who are faced with situations they’re not prepared to handle,” Segura said.

In 2023, the Providers’ Council, which represents human service agencies, surveyed providers and estimated that 30,000 jobs were open in fields like child care, outpatient mental health and substance use centers, residential homes for people with disabilities, and home health aides.

The Massachusetts Senior Care Association, which represents nursing homes, says Massachusetts nursing facilities have about 4,000 job vacancies. A 2024 survey by the Center for Health Information and Analysis found that around one-fifth of positions for registered nurses in home health care and nursing homes were vacant. Around one-third of full-time social workers and direct care workers leave their jobs each year, CHIA found.

While an investigation remains ongoing into a recent fire that killed ten residents at Gabriel House, a Fall River assisted living facility, current and former employees told the Globe the facility was understaffed. State standards say only that staffing at assisted living facilities must be “sufficient” based on residents’ needs. Gabriel House reportedly had two staff members available for 70 residents overnight. (The fire is prompting discussions about whether assisted living facilities should have mandated staffing ratios, which the industry has resisted.)

One theme that runs through the Providers’ Council report and CHIA’s data is workers often leave because of low compensation. The Providers’ Council report found that the median annual salary in 2021 was between $36,300 and $49,870 for human service professions including home health aides, school social workers, mental health counselors, and certified nursing assistants. Today, Providers’ Council President/CEO Bill Yelenak said the median salary for an entry-level direct care worker at a state-contracted nonprofit is $20.79 an hour.

Rachel Gwaltney, executive director of the Children’s League of Massachusetts, which represents child and family service providers, said it’s hard to attract workers to challenging caretaking jobs when wages are similar to retail or food service.

Making matters worse, the industry has many foreign-born workers who could be jeopardized by President Trump’s immigration crackdown. The Massachusetts Senior Care Association told the editorial board that it expects 2,000 certified nursing assistants — about 10 percent of nursing home direct care workers — could lose legal status due to Trump’s discontinuation of Temporary Protected Status and a parole program for Cuban, Haitian, Nicaraguan, and Venezuelan nationals.

To its credit, Massachusetts has been increasing rates paid for state-contracted services. The challenge will be maintaining adequate rates as the federal government slashes Medicaid, squeezing the state budget.

Read the full article here

Disabled Americans Fear What Medicaid Cuts Could Do to Them

The White House says roughly $1 trillion in Medicaid cuts won’t limit home- and community-based care. Health care experts disagree.

By Maggie Astor, The New York Times, July 21, 2025

It takes round-the-clock care to keep 10-year-old June Rice alive.

Her ileostomy bag needs to be emptied multiple times a day, and the exposed end of her intestine must be inspected. Her body has to be regularly repositioned in her wheelchair so that she won’t get sores. Her saliva needs to be suctioned from her mouth to prevent aspiration, and her food and medication must be administered through a gastric tube.

June has rare diseases that affect her intestines and brain. Her parents do what they can for her, but they have jobs and two other children — they can’t do it all. What allows June to live at home, go to school and hang out with friends is a Medicaid program in Utah that provides in-home nurses, a type of benefit called home- and community-based care.

That care means she doesn’t have to live in a nursing home or other medical institution, said her mother, Courtney Demmitt-Rice.

“We would do anything to keep that from happening,” she said. “But your body can only give so much.”

Medicaid is best known as a program for low-income people, but it is also a key vehicle by which disabled Americans of varying income levels receive health care that would otherwise be prohibitively expensive. June is one of about 4.5 million Americans who depend specifically on its home- and community-based care services, which often come through specialized programs known as waivers.

That 4.5 million includes many older Americans who are on Medicare too but can’t get the home care they need through that. But it also includes many working-age adults, and about 14 percent of the total are 18 or younger, according to the health research group KFF.

Now many of these Americans, and their families, fear the services could be at risk because of the roughly $1 trillion in federal Medicaid spending cuts to come over the next 10 years, part of the sweeping policy bill that President Trump signed into law this month.

“Everyone’s just bracing for impact,” said Alison Chandra, a pediatric nurse who provides home care for June.

Federal law deems most home- and community-based services as optional, so they are often targeted when states have to tighten their belts. When temporary Great Recession increases in Medicaid funding expired in the early 2010s, for example, every state reduced home care by limiting enrollment or lowering spending on existing recipients.

The White House and congressional Republicans said people with disabilities would not be affected by the cuts; the Trump administration maintains that states can balance their budgets just by reducing hospital reimbursements for Medicaid services. Theo Merkel, a policy adviser to Mr. Trump, said claims of a threat to home care were “intentionally misleading.”

But health care experts disagree. They said that lower hospital reimbursements would be insufficient for many states, and that cuts to home- and community-based care were a real possibility.

“It’s not accurate to argue that every state can simply make up any funding gaps by cutting hospital reimbursement only,” said Dr. Benjamin Sommers, a physician and professor of health care economics at Harvard. He called it “wishful thinking.”

Health care experts anticipate cuts to home- and community-based care in some states because the new law limits provider taxes. Almost every state taxes hospitals, then uses the revenue to pay the hospitals for treating Medicaid patients. That increases Medicaid spending on paper and triggers more federal matching funds, which states use to cover various Medicaid services.

The 22 affected states where provider taxes are higher than the new law’s cap — 3.5 percent of net patient revenue — will lose federal money. The White House argued that this would not affect home- and community-based care because states could make up the difference by paying hospitals less for Medicaid services, reducing the rates to match those of its sister program, Medicare.

Experts said the White House’s argument was unrealistic. Not all states pay higher prices for Medicaid than for Medicare, and even for those that do, the numbers don’t add up, Dr. Sommers said. Many states will have to find money somewhere else, too, and each state will have to choose whether that somewhere is home- and community-based care or another part of their budget.

Adrianna McIntyre, an assistant professor of health policy and politics at Harvard, noted that many hospitals were going to lose revenue from other parts of the law, too, and said cutting their payments could force some to close.

Reductions could come in several forms. States could place further restrictions on who qualifies for coverage, cover fewer hours of care or lower pay for home health workers. Or they could eliminate waiver programs altogether. Even at existing funding levels, hundreds of thousands of people are on waiting lists for waivers, and those lines could get longer.

Read the full article here

How Trump’s budget impacts older adults

By Liz Seegert, The Association of Health Care Journalists, July 21, 2025

Aging services advocates say the FY 2026 budget bill, which includes massive cuts to Medicaid and nutrition services, will mean the upheaval of vital programs keeping older adults healthy and aging in their communities. 

Among the programs and services affected:

• Medicare Shared Savings Program: This program helps dual-eligibles — low-income older adults who receive both Medicare and Medicaid — pay for their Medicare premiums. The Congressional Budget Office (CBO) has estimated that if a 2023 rule initiated under former president Biden that streamlined enrollment into the program is not implemented, approximately 1.38 million fewer beneficiaries will be covered by MSPs and dually covered by Medicare and Medicaid by 2034,. This is projected to reduce federal spending by $66 billion for 2025–2034, according to The Commonwealth Fund. And, The Medicare Rights Center says that a restructuring of Medicaid financing could eliminate many home and community-based services that aren’t mandated under existing regulations.

• Home and community-based services: These help older people with activities of daily living, like bathing, dressing and toileting. They’re important services that help keep people out of nursing homes. But because these programs are not mandatory, they will likely be a key target for cuts, The Scan Foundation’s Sarita Monhanty and Narda Ipakchi wrote. “States with fewer federal dollars for Medicaid might restrict access for HCBS by modifying eligibility standards or reducing benefits. Ironically, this could ultimately end up costing states more, as HCBS has been shown to be cost-effective by delaying or preventing the need for more expensive institutional care,” they said.

• Direct Care Workforce: Medicaid recipients who need home-based services are required to use Medicaid-certified agencies. However, funding cuts will reduce payments to these agencies, where workforce recruitment and retention are already a major problem, according to the direct care workforce research and advocacy organization PHI. It will become harder to find workers or agencies to provide vital home care.

Medicaid is not the only target of the budget. Food assistance — SNAP, the Supplemental Nutrition Assistance Program run by the USDA, will see about$186 billion cut, stricter eligibility requirements and work mandates for recipients over the next decade. Some states will be hit especially hard, making it more difficult for older people to qualify or reducing their benefits.

While Republican lawmakers have consistently said that qualified elderly, children and those with disabilities would not lose benefits, elder advocates noted, “SNAP is a household-based program, when able-bodied adults in the household lose benefits due to work requirements, SNAP allotments would be cut for the remaining members, who disproportionately include seniors, disabled people and children, increasing their risk of hunger.” They also say that SNAP cuts would increase the likelihood of Medicaid cuts, particularly the optional programs relied upon by disabled and older people, due to cost-shifting to the states.

Read the full article here

Medicaid cuts will further strain free and charitable health clinics

By Ariana Gordillo De Vivero and Harley Jones, STAT, July 18, 2025

It will be years before the U.S. feels the full weight of the recent sweeping Medicaid cuts. But the free and charitable clinics that act as the last line of defense for the health and well-being of uninsured Americans are already preparing to pick up the pieces.

These nonprofit clinics are the backbone of America’s health care safety net. They deliver high-quality, free, or low-cost care to uninsured and underserved Americans through a blended staff-volunteer model. According to the National Association of Free & Charitable Clinics (NAFC)’s 2025 report, these patients represent some of the most vulnerable populations in the country: Eighty-four percent were uninsured, and 59% were employed but still unable to afford or access health insurance. Seventy-six percent lived at or below 200% of the federal poverty level, underscoring the economic barriers facing too many Americans.

Despite growing demand — driven in part by rising living costs — free and charitable clinics operate under increasing financial strain. In 2024, these organizations delivered more than 6 million patient visits nationwide, with most clinics operating on annual budgets under $250,000. That’s a fraction of what larger providers, like federally qualified health centers, receive.

Conversely, the NAFC report found that 86% of free and charitable clinics do not bill any form of insurance and receive little to no state or federal dollars, underscoring the critical need for private investment to sustain their work.

This funding disparity is particularly troubling given the vital role free clinics play in reducing systemwide costs. By providing preventive and primary care, these clinics help patients manage chronic conditions and reduce the reliance on emergency room visits for non-emergent issues.

Studies show that uninsured people are significantly more likely to visit the emergency room for preventable conditions, and among these patients, nearly one in five treat-and-release visits carry the risk of catastrophic health expenditures — a risk that increases with each subsequent visit.

Already, the number of uninsured people in the United States is projected to reach 27.3 million this year alone. This number will climb even higher now that the “One Big Beautiful Bill Act” has been signed into law. It could cause around 16 million people, including children, to lose Medicaid coverage over the next decade.

What will happen to those 16 million? Many will turn to their local free clinic. Others will resort to emergency rooms, straining hospital systems, and worsening their own long-term financial and physical health.

Continued

North Carolina Could Better Ensure That Intermediate Care Facilities for Individuals With Intellectual Disabilities Comply With Federal Requirements for Life Safety and Infection Control         

Report from the U.S. Department of Health and Human Services, Office of the Inspector General

July 23, 2025

Why OIG Did This Audit

• Intermediate care facilities for individuals with intellectual disabilities (ICF/IIDs) that participate in Medicaid are required by CMS to comply with requirements intended to protect residents. This includes requirements related to life safety and emergency preparedness plans. Facilities are also required to develop infection control programs.
• In North Carolina, the State’s Department of Health and Human Services (State agency) conducts surveys of ICF/IIDs for compliance with federal requirements.
• This audit is part of a series of audits that assesses compliance with CMS’s life safety, emergency preparedness, and infection control requirements for ICF/IIDs.

What OIG Found

We identified 14 deficiencies related to life safety and infection control at the 3 ICF/IIDs operated by North Carolina. We did not identify any deficiencies related to emergency preparedness.

What OIG Recommends

We recommend that North Carolina:

1. verify that the three ICF/IIDs we inspected have taken corrective actions on the life safety and infection control deficiencies identified during the audit,
2. work with the applicable ICF/IID to determine whether mold exists, and
3. work with CMS to develop standardized life safety training for staff at ICF/IIDs.

The State agency concurred with two of our recommendations and detailed steps it has taken in response to our recommendations. For our third recommendation, the State agency did not indicate concurrence or nonconcurrence.

Read the article here

Download the OIG Report here

Download the Report Highlights here

Missouri & Kansas - ‘Medicaid is a lifeline’ for people living with disabilities, but they are about to lose vital services  

By Suzanne King, The Kansas City Beacon, July 21, 2025

Debbie Ferrell-Day worries most about who will take care of her 37-year-old son if something happens to her.

Ian Day has Down syndrome. He lives in an apartment with a roommate. He works part-time as a bus boy. And he’s a Special Olympics medalist. 

But Ian can’t drive, so Ferrell-Day, 70, takes care of that. And without her help, he would have trouble navigating bureaucratic obstacles like the ones that will come with President Donald Trump’s new budget law.

“Even though we’ve done everything we can to plan for his future and make sure that he’s in a good place when we’re gone,” said Ferrell-Day of Gladstone, “I’m worried about him if something happens to me because I’m his main person. I don’t know what will happen.”

Now some of the basic safety-net services he relies on are at risk. 

The budget reconciliation bill that Congress narrowly approved in early July will cut $1 trillion of federal spending from Medicaid over the next decade and add work requirements and more frequent eligibility checks for people who need Medicaid coverage and other safety-net programs like food stamps. 

The new law is expected to cause 11.8 million people to lose health coverage over the next decade by trimming the number of benefit recipients and pushing more costs onto states. 

Advocates fear that people living with disabilities may be among those most harmed by Trump’s overhaul of the country’s social safety net. And federally funded organizations established to help are also in line for steep budget cuts.

Rocky Nichols, executive director of the Disability Rights Center of Kansas, one of those organizations, said it’s difficult to be optimistic about what’s ahead for the disability community.

“There’s a very bright light at the end of the tunnel,” he said, “and it’s a train that is just about to run people over. I can’t sugarcoat this. It’s horrible.”

Advocates expect cuts to optional services

MO HealthNet, Missouri’s Medicaid program, covers 36% of working-age adults with disabilities. KanCare, Kansas’ Medicaid program, covers 30% of working-age adults with disabilities. 

Although some of the provisions in the new budget law won’t go into effect right away, including the work requirements, states are likely to begin making changes to prepare for the added costs they expect. And those could start anytime.

Medicaid is jointly funded by state and federal taxes, overseen by the federal government, but administered at the state level. 

Parts of the program can’t be touched because they are legally required. Institutional care, for example, is considered an entitlement that must be covered, limiting where states can cut dollars.

In Missouri, finding ways to cut Medicaid spending may be even more challenging because coverage for the population of adults added under Medicaid expansion in 2021 is enshrined in the state’s constitution and can’t be eliminated without voter approval.

States have to fund care required under the law first, said Elise Aguilar of the American Network of Community Options and Resources, a national nonprofit. “What’s left over is going to see reductions,” she said.

And what’s left over are largely optional services, which states are allowed to offer under waivers obtained from the Centers for Medicare and Medicaid Services, the federal agency that oversees the program.

One of the biggest optional services in most states, including Missouri and Kansas, is home and community-based care, which lets people stay in their homes rather than having to move to a nursing home. 

People with disabilities are among the most reliant on that service, which could include anything from nursing care to personal help to transportation.

Missouri and Kansas have not said how they plan to navigate the loss of federal Medicaid funding, but most disability advocates are bracing for them to cut back on those at-home services. And that will have devastating effects, they said.

Read the full article here

South Dakota - Medicaid cuts in federal budget could hit rural health hard in SD

By Bart Pfankuch, Dakota News Now / South Dakota News Watch, July 19, 2025

Wade Erickson doesn’t want to seem like an alarmist.

But Erickson, CEO of Horizon Health in South Dakota, has serious concerns about how the Medicaid cuts embedded in the giant taxation and budget law signed by President Trump will affect the health of South Dakotans, especially in rural areas.

Horizon provides medical care to people across a 28,000 square-mile area of the state. Each year, about 26,000 patients are treated in 80,000 appointments at 27 Horizon Health clinics, dental offices and mental-health centers in South Dakota.

Details are still to come on the cuts to Medicaid, the health insurance program for low-income Americans. But early indications are that the law will cut federal aid to health care by $1 trillion over the next decade.

The nonpartisan Congressional Budget Office estimated that the law will remove 12 million Americans from enrollment in the Medicaid program, many due to new work requirements.

From Erickson’s standpoint, that would impact rural health in two ways.

First, patients who lose Medicaid coverage and are not able to afford medical care from their own pockets will be more likely to delay preventive care or may avoid getting needed medical treatments altogether.

“If people are afraid to access health care because they can’t afford to pay for it, or they stop taking care of their wellness and are no longer catching chronic diseases early to where they can be managed, there’s a very good possibility that it could lead to people being more sick, and also some more people dying before they would otherwise,” Erickson told News Watch.

Secondly, health providers like Horizon, which already run on small or even negative profit margins on some procedures, will see less revenue and could be forced to reduce services.

About 65% of Horizon’s annual budget is funded by the federal government, with roughly 20% coming from Medicaid, which sometimes does not cover the full cost of patient treatments and procedures. Other federal funding sources include Medicare and the annual payment made as part of the Federal Qualified Health Center program.

As a federally qualified center, Horizon cannot turn away any patients. If fewer people are covered by Medicaid, Horizon will have to ask them to pay on a sliding scale or simply provide unreimbursed coverage if the patients cannot afford to pay.

“Just because people lose coverage doesn’t mean they stop getting sick or they should stop taking care of their wellness and chronic conditions,” Erickson said.

Worries arise for long-term care industry

Providers in the long-term care industry in South Dakota are also trying to determine how the recent budget law will affect their ability to provide care or even remain financially viable, said Mark Deak, executive director of the South Dakota Health Care Association.

The association represents about 170 nursing homes, assisted-living and senior-care homes as well as about 90 vendors and suppliers to the long-term care industry in the state. Many of those facilities, particularly in rural areas, have experienced financial challenges in recent years, leading 10% of nursing homes to close during the early 2020s, Deak said.

While the budget bill does not contain direct cuts to long-term care funding, anticipated reductions in Medicaid funding could squeeze revenues for facilities that on average receive 54% of income from Medicaid enrollees, Deak said.

As a result, care facilities could be hit with revenue challenges, especially in rural areas where workforce is limited and costs can be higher, he said. Meanwhile, potential residents with limited financial resources could find it harder to obtain long-term care.

“Given how tight the margins are, and how tight the budget could get, it just ratchets up the level of anxiety,” Deak said. “Given the overall fiscal pressures, we’re just thinking about what the impacts could be.”

Another less-prominent piece of the legislation, Deak said, will shorten by a month the time period long-term care facilities have to process and be reimbursed for new residents, which also could make it less likely they will take in new low-income residents.

The bill did include one big win for long-term care facilities.

It paused a federal staffing level requirement that Deak said would have forced facilities in South Dakota to hire 300 new nurses. That was an expensive and potentially impossible directive to meet given the lack of available workforce, he said. 

Read the full article here

3 Democrat-led states cut Medicaid access for people lacking permanent legal status to save money: ‘People are going to die’

By Trân Nguyễn, Devi Shastri, and The Associated Press, via Fortune, July 22, 2025

For nearly 20 years, Maria would call her sister — a nurse in Mexico — for advice on how to manage her asthma and control her husband’s diabetes instead of going to the doctor in California.

She didn’t have legal status, so she couldn’t get health insurance and skipped routine exams, relying instead on home remedies and, at times, getting inhalers from Mexico. She insisted on using only her first name for fear of deportation.

Things changed for Maria and many others in recent years when a handful of Democrat-led states opened up their health insurance programs to low-income immigrants regardless of their legal status. Maria and her husband signed up the day the program began last year.

“It changed immensely, like from Earth to the heavens,” Maria said in Spanish of Medi-Cal, California’s Medicaid program. “Having the peace of mind of getting insurance leads me to getting sick less.”

At least seven states and the District of Columbia have offered coverage for immigrants since mostly 2020. But three of them have done an about-face, ending or limiting coverage for hundreds of thousands of immigrants who aren’t in the U.S. legally in California, Illinois and Minnesota.

The programs cost way more than officials had projected at a time when the states are facing multibillion-dollar deficits now and in the future. In Illinois, adult immigrants ages 42-64 without legal status have lost their health care to save an estimated $404 million. All adult immigrants in Minnesota no longer have access to the state program, saving nearly $57 million. In California, no one will automatically lose coverage, but new enrollments for adults will stop in 2026 to save more than $3 billion over several years.

Cuts in all three states were backed by Democratic governors who once championed expanding health coverage to immigrants.

The Trump administration this week shared the home addresses, ethnicities and personal data of all Medicaid recipients with U.S. Immigration and Customs Enforcement officials. Twenty states, including California, Illinois and Minnesota, have sued.

Health care providers told The Associated Press that everything, especially the fear of being arrested or deported, is having a chilling effect on people seeking care. And states may have to spend more money down the road because immigrants will avoid preventive health care and end up needing to go to safety-net hospitals.

“I feel like they continue to squeeze you more and more to the point where you’ll burst,” Maria said, referencing all the uncertainties for people who are in the U.S. without legal permission.

‘People are going to die’

People who run free and community health clinics in California and Minnesota said patients who got on state Medicaid programs received knee replacements and heart procedures, and were diagnosed for serious conditions like late-stage cancer.

CommunityHealth is one of the nation’s largest free clinics, serving many uninsured and underinsured immigrants in the Chicago area who have no other options for treatment. That includes the people who lost coverage July 1 when Illinois ended its Health Benefits for Immigrants Adults Program, which served about 31,500 people ages 42-64.

One of CommunityHealth’s community outreach workers and care coordinator said Eastern European patients she works with started coming in with questions about what the change meant for them. She said many of the patients also don’t speak English and don’t have transportation to get to clinics that can treat them. The worker spoke to the AP on condition of anonymity to protect patients’ privacy.

HealthFinders Collaborative in Minnesota’s rural Rice and Steele counties south of Minneapolis serves low-income and underinsured patients, including large populations of Latino immigrants and Somali refugees. Executive director Charlie Mandile said they’re seeing patients rushing to squeeze in appointments and procedures before 19,000 people age 18 and older are kicked off of insurance at the end of the year.

Free and community health clinics in all three states say they will keep serving patients regardless of insurance coverage — but that might get harder after the U.S. Department of Health and Human Services decided this month to restrict federally qualified health centers from treating people without legal status.

CommunityHealth CEO Stephanie Willding said she always worried about the stability of the program because it was fully state funded, “but truthfully, we thought that day was much, much further away.”

“People are going to die. Some people are going to go untreated,” Alicia Hardy, chief executive officer of CommuniCARE+OLE clinics in California, said of the state’s Medicaid changes. “It’s hard to see the humanity in the decision-making that’s happening right now.”  

Continued 

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VOR SUPPORTS:

H.R.1262 & S.932 - Rep. Michael McCaul (R-TX) and Sen. Markwayne Mullin (R-OK) "Give Kids A Chance Act" - To amend the Federal Food, Drug, and Cosmetic Act with respect to molecularly targeted pediatric cancer investigations. This bill would renew research into pediatric cancers and includes increasing funding for rare diseases, some of which cause Intellual and developmental disabilities and autism.  

H.R.1509 & S.752 - Rep. Lori Trahan (D-MA) & Sen. Chuck Grassley (R-IA)

Accelerating Kids' Access to Care Act -

This bill would amend titles XIX and XXI of the Social Security Act to streamline the enrollment process for eligible out-of-state providers under Medicaid and CHIP, and streamline enrollment under the Medicaid program of certain providers across State lines.

H.R.2598 & S.1277 - Rep Jared Huffman (D-CA) and Sen Chris Van Hollen (D-MD) The IDEA Full Funding Act

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

S.2279 - Sen. Josh Hawley (R-MO)

A bill to repeal the changes to Medicaid State provider tax authority and State directed payments made by the One Big Beautiful Bill Act and provide increased funding for the rural health transformation program.

H.R.1950 - Rep. Mark Pocan (D-WI) - Protect Social Security and Medicare Act

To protect benefits provided under Social Security, Medicare, and any other program of benefits administered by the Social Security Administration or the Centers for Medicare and Medicaid Services. 

S.779 & H.R.1735 - Sen. Alex Padilla (D-CA) & Rep. August Pfluger (R-TX)

To amend title XIX of the Public Health Service Act to provide for prevention and early intervention services under the Block Grants for Community Mental Health Services program

H.R.2491 & S.1227 - Rep Kat Cammack (R-FL) & Sen. Edward Markey (D-MA) - The ABC Act

To require the Administrator of the Centers for Medicare & Medicaid Services and the Commissioner of Social Security to review and simplify the processes, procedures, forms, and communications for family caregivers to assist individuals in establishing eligibility for, enrolling in, and maintaining and utilizing coverage and benefits under the Medicare, Medicaid, CHIP, and Social Security programs



VOR OPPOSES:

H.R.2743 & S.1332 - Rep. Bobby Scott (D-VA) & Sen. Bernie Sanders (I-VT) Raise the Wage Act - A bill to provide increases to the Federal minimum wage and for other purposes. VOR opposes the provision in this bill that would phase out section 14(c) and sheltered workshops for indiviiduals with I/DD and autism.

S.2438 - Transformation to Competitive Employment Act (Sen. Chris Van Hollen (D-MD) - A bill to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support people with disabilities through competitive integrated employment, to phase out the use of such special certificates, and for other purposes.