August 15, 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.

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Episode 3 - Part 2

Joanne St. Amand

"What Happened When NJ Closed

Two of its State-Operated

Intermediate Care Facilities"

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It's Not Too Late!

Your Members of the House and Senate are back home through Labor Day.

We urge you to contact their offices now, and ask to meet to speak about how to protect our loved ones with I/DD and autism.

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

H.R.1 Threatens Access to Care for Individuals with Intellectual and Developmental Disabilities

By Christopher Cantrell, Anna Lansky, & Jonah Frohlich, Edited by Melina Dutton & Amanda Eisenberg,

The 80 Million, August 13, 2025

• More than seven million people in the United States have an intellectual or developmental disability (I/DD). One in three individuals with I/DD are enrolled in Medicaid, which provides health coverage, long-term services and supports, and home and community-based services.
• H.R.1 includes major changes to Medicaid eligibility and cost-sharing for expansion adults. While certain individuals with I/DD are exempt, we expect that many individuals will struggle to demonstrate eligibility for these exemptions and compliance with the requirements, leading to significant drops in coverage and access to services.
• This will affect people with I/DD, as well as their caregivers, service providers, and communities.

The 80 Million Impact

The enactment of H.R. 1’s Medicaid work reporting requirements, more frequent eligibility redeterminations, and higher co-pays will create new barriers to coverage and services for individuals with I/DD, their caregivers, and families. While the law provides exemptions from some requirements for individuals with I/DD and caregivers, we expect that complexities in navigating eligibility processes and documentation requirements will cause many of these individuals to lose coverage. H.R.1 places more pressure on states, MCOs, case managers, providers, and others to establish communication, information sharing, and client engagement strategies to help individuals with I/DD and their families navigate these new complexities and minimize disruptions in coverage and access to services.

Increased Eligibility Redeterminations

Starting December 31, 2026, states must redetermine eligibility for adults enrolled through Medicaid expansion or an expansion-like section 1115 waivers once every six months, doubling the annual redetermination frequency limit previously in place. Our modeling team anticipates that millions of people will lose their coverage from more frequent redeterminations. Individuals with I/DD are particularly vulnerable to losing coverage due to a variety of factors, including:

• Inaccessible communication: Notices are written in complex, bureaucratic language, often not available in plain language or other languages, making them difficult for people with I/DD to understand.
• Lack of support and coordination: Many individuals don’t receive the help they need to understand or complete the redetermination process and paperwork. Medicaid and I/DD eligibility systems are often siloed, and case managers — when available —are often not trained in supporting individuals in maintaining coverage.
• Caregiver burden: Individuals with involved families fare better, but even families struggle due to work, caregiving duties, and the complexity of the system.

Coverage losses can be life threatening for individuals with I/DD, particularly for people with co-occurring medical complexity and fragility, or those without “natural supports” like relationships with family, friends or community members. Without Medicaid access, individuals with I/DD may lose their ability to participate in daily activities, be forced to move to more restrictive settings, or end up in emergency rooms, jails or hospitals — scenarios that may also play out for people with serious mental illness, housing instability or substance use disorder.

Higher Costs for Individuals with I/DD Enrolled in Medicaid

Effective October 1, 2028, H.R.1 requires states to impose cost sharing for certain services for Medicaid expansion enrollees with incomes above 100% of the Federal Poverty Level (FPL), which can be as high as $4 for preferred drugs, $8 for non-preferred drugs, and $35 for other services (subject to an aggregate limit of 5% of family income). States also have the option to permit providers to deny services if an individual does not pay the required cost sharing. Individuals with I/DD enrolled in the expansion group will be subject to cost-sharing if they have incomes above 100% of the FPL. This will increase barriers to needed services for individuals with I/DD, who utilize key services like medications at higher rates than individuals without disabilities.

Heightened Instability Across I/DD Provider Networks

The combination of more frequent eligibility redetermination, work requirements, and higher costs for services will mean more churn and coverage losses for individuals with I/DD. This will create more instability for direct support professionals (DSPs) and other providers that serve individuals with I/DD – groups that already face low reimbursement rates and wages, and high costs.

Over time, this may lead to reductions in provider capacity as providers and provider organizations grapple with unpredictable program enrollment and caseloads. These challenges will be exacerbated by other changes to Medicaid financing in the enacted bill, including changes to provider taxes and state-directed payments, which will place further burden on state budgets and health systems.

The Bottom Line

Taken together, the proposed changes in the reconciliation bill present significant threats to the stability and accessibility of Medicaid for individuals I/DD. While some exemptions are intended to protect this population, the real-world implementation of similar policies has shown that many individuals with I/DD are at risk of falling through the cracks — with potentially devastating consequences.

Read the full article here

Proponent of Medicaid cuts set to brief House Republicans as they plot another megabill

By Benjamin Guggenheim and Meredith Lee Hill, POLITICO, August 13, 2025

An influential group of House Republicans has invited a chief architect of the hard-right push for deep Medicaid spending cuts to brief congressional aides Thursday as GOP leaders quietly map out a possible second party-line reconciliation package.

Brian Blase, president of the Paragon Health Institute, will address a staff briefing on health care reform hosted by the Republican Study Committee, according to an invitation obtained by POLITICO.

The RSC, composed of 189 House conservatives, has been a key force pushing for a follow-on to President Donald Trump’s “big, beautiful bill” that was signed into law last month. The group has invited several conservative experts to address staffers in recent weeks though it has yet to endorse any specific health care policies for any forthcoming package.

Those staff-level meetings continue as House GOP leaders try to plot a way forward amid skepticism over whether another sprawling domestic policy bill is even possible given the difficulties Republicans had coming to agreement over the first one.

House leaders discussed the topic with GOP chairs right before the chamber left for August recess, according to two Republicans granted anonymity to discuss the private gathering, tasking them with compiling lists of possible spending cuts and other ideas.

What policies might be addressed in a second package is far from settled, though some House GOP factions are discussing further slashing Medicaid as well as possibly targeting Medicare funding.

Blase was allied with conservative hard-liners earlier this year in pushing for significant cuts to Medicaid in the first GOP package. He was the initial author of a letter arguing for “structural” changes to the program that Rep. Chip Roy (R-Texas) and 19 other hard-right members later sent to their House Republican colleagues.

Continued

New CBO Health Coverage Estimates of Budget Reconciliation Law

By Edwin Park, Georgetown University, McCourt School of Public Policy, August 14, 2025

On August 11, 2025, the Congressional Budget Office (CBO) issued more detailed estimates of the impact of the budget reconciliation law (H.R. 1 or P.L. 119-21) on health coverage. Consistent with final cost estimates issued in July, CBO finds that the reconciliation law will increase the number of uninsured people by 10 million in 2034, relative to CBO’s January 2025 baseline.

• CBO estimates that the reconciliation law’s Medicaid, CHIP, Marketplace and Medicare cuts will increase the number of uninsured by 1.3 million in 2026, relative to CBO’s January 2025 baseline for that year. That increase in the number of uninsured people, relative to CBO’s baseline, will significantly rise to 5.2 million in 2027, jump to 6.8 million in 2028, jump again to 8.6 million in 2029 and then steadily grow to 10 million by 2034.

• Notably, CBO’s estimates of the overall 10 million net increase in the number of uninsured in 2034 do not include the impact of the law failing to extend the enhanced Marketplace premium tax credits which are scheduled to expire at the end of calendar year 2025. While expiration of the enhanced premium tax credits was already assumed in the CBO baseline, extension of the enhanced premium tax credits would prevent another 4.2 million people from becoming uninsured by 2034 according to earlier CBO estimates. Combined with other Marketplace changes already assumed in the CBO baseline, the total increase in the uninsured under the budget reconciliation law would likely equal about 15 million by 2034.

Read the full article here

A Tip of the hat to VOR's Sam Friedman for pointing out an article I'd missed that covers the broad scope of cuts to Medicaid in H.R.1 - The One Big Beautiful Bill Act.

The article provides a well-organized summary of the key points in the new law, and links to articles that provide more detailed analysis of those points.

A useful reference for the years ahead, especially after the Mid-term elections, when the most severe cuts start to kick in.

Health Provisions in the 2025 Federal Budget Reconciliation Law

KFF, August 4, 2025

Read the article here

12 States That Will Be Hit the Hardest by Medicaid Cuts   

By Caitlyn Moorhead, GO Bsnking Rates via NASDAQ, August 13, 2025

Editor’s note on political coverage: GOBankingRates is nonpartisan and strives to cover all aspects of the economy objectively and present balanced reports on politically focused finance stories.

One of the most significant pieces of legislation of President Donald Trump’s second administration is the passing of the One Big Beautiful Bill Act (OBBBA), a massive budget reconciliation bill basically designed as a continuation to prolong many of the major facets of Trump’s Tax Cuts and Jobs Act from 2017, from his first term.

There are many ways in which the OBBBA will impact ordinary Americans through its Medicaid cuts — a fact that originally stalled the bill in the Senate after passing in the House. Now that it’s passed, a dozen states are poised to suffer the most from the Medicaid cuts. 

Quick Take: OBBBA vs. Medicaid

There are many provisions of the OBBBA designed to implement stricter Medicaid eligibility requirements. Here are a few key takeaways:

• OBBBA slashes $1 trillion in Medicaid funding over a decade, impacting states’ ability to maintain current coverage levels.
• There will be new verification requirements to receive Medicaid, which will be limiting to many current users. 
• It is now mandating more frequent redeterminations, which increases the number of eligibility checks, making it harder for some to maintain coverage, particularly those experiencing short-term job loss.
• Medicaid recipients who live above the poverty line are now forced to pay more for their coverage.

States Being Hit the Hardest by Medicaid Cuts

Currently, 12 states in America are likely most vulnerable to Medicaid cuts as featured in the OBBBA. Those states have what are known as “trigger laws” — policies in place in which Medicaid expansion would either be scaled back, end entirely if federal funding for Medicaid is cut or cause reviews that could result in cut benefits or the elimination of expansions, per HealthInsurance.org. Those states are:

• Arizona
• Arkansas
• Idaho
• Illinois
• Indiana
• Iowa
• Montana
• New Hampshire
• New Mexico
• North Carolina
• Utah
• Virginia

Final Take To GO

The bottom line is that OBBBA is aiming to truly gut Medicaid and its coverage for millions of Americans. It significantly impacts Medicaid through cuts to funding, stricter eligibility requirements and increased cost-sharing for recipients. These changes are projected to reduce Medicaid spending by $1 trillion over ten years, and this healthcare bill passing raises the question as to what and who the Trump administration is really saving.

Read the full article here

UMass Memorial Health slashes services as Medicaid cuts loom. It may be a sign of what’s to come in Massachusetts health care

By Marin Wolf, The Boston Globe, August 14, 2025

For UMass Memorial Health, a brutal year looks like it’s only going to get worse.

Weighed down by an $86 million operating loss over the first half of fiscal year 2025, the huge health system based in Worcester has been slowly chipping away at services provided by its community-based provider. It’s already shut several programs, including two primary care clinics and a substance use treatment center for teens, and will soon close a behavioral health program for adults in Fitchburg.

Its financial struggles are emblematic of a worrisome future for all of medical care in Massachusetts. Already hemmed in by rising costs and tight insurance reimbursements, health care providers in the state are expected to lose some $3.5 billion in Medicaid payments.

With more than half of the hospitals in the state currently in the red, Alan Sager, a Boston University professor of health law, policy, and management, said the Medicaid cuts will only compound the difficult financial decisions many are already facing.

“There will be program closures,” Sager said. “There will be individual patients who don’t get care because they lost coverage or because the program that served them was eliminated.” 

The dominant provider of medical care in Central Massachusetts, UMass Memorial treats some 500,000 patients a year, more than a quarter of them covered by Medicaid, the government health insurance for the poor and disabled. About one in 20 UMass Memorial patients are uninsured, which means the health system often has to absorb the costs of treatment, adding to the financial strain.

Dr. Eric Dickson, the UMass Memorial chief executive, said the recent program closures were made in part to offset recent financial shortfalls, but also were driven by the impending cuts to Medicaid.

President Trump’s signature tax and spending legislation will slash nearly $1 trillion from Medicaid over the next 10 years, taking health insurance away from up to 16 million Americans, according to the nonpartisan Congressional Budget Office. UMass Memorial estimates that 100,000 of its patients are at risk of losing Medicaid coverage because of new eligibility and work requirements. 

Prior to enactment of the law, Dickson said, he believed he could manage the operating losses and return to profitability “in a slow, thoughtful manner.” But the massive cuts to Medicaid meant UMass Memorial could no longer take a gradual approach.

“I went back to my board” of directors, Dickson recalled, “and said, ‘I’ve got to move hard and fast.’ ”

The financial outlook has undoubtedly become darker for hospital systems such as UMass Memorial that care for high numbers of low-income and uninsured patients, said Karen Errichetti, an assistant professor of public health and community medicine at Tufts School of Medicine.

But Medicaid cuts are only one source of the instability.

Costs of labor, drugs, and medical supplies are up, while hospitals serving large low-income populations tend to operate on razor-thin margins.

Total expenses for hospitals in 2024 grew by 5.1 percent, well above the overall rate of inflation of 2.9 percent , according to the American Hospital Association’s 2025 Cost of Caring report. At the same time, reimbursements have lagged; Medicaid, for example, covered only 83 cents for every $1 spent by hospitals in 2023.

“UMass is a very important safety net hospital system within our state and has an important role to play in that larger community that needs a safety net,” said Errichetti. “The things going on right now are a sign of broad pressures on safety net hospitals in general.”

Across the state, health systems have closed clinics offering mental health services, obstetrics, and primary care as they attempted to balance their budgets. 

Read the full article here

Here’s how many Minnesotans may die because of Congress’ Medicaid cuts

Opinion by Thomas Lane, Minnesota Reformer, August 11, 2025

When we hear about health policy changes in the news, usually the numbers we hear are related to insurance: How many people will become insured or uninsured as a result of the latest legislation? Analysts — and as a result, news reporters, too — tend to use these numbers because they’re relatively simple to predict and understand.

But at the end of the day, health insurance is just a little card legally linked to a thick stack of paperwork in some office somewhere. Insurance numbers don’t really tell us much about what we actually want to know, which is the human health impact. How many medically avoidable deaths will a given piece of legislation prevent or cause? How many will or won’t get the care they need? How many more will or won’t be in medical debt?

Congress passed and on July 4 President Trump signed his “One Big Beautiful Bill Act,” the largest ever cut to government health care funding in U.S. history. The Congressional Budget Office projects the law will push about 10 million Americans off of health insurance while growing the deficit by $3.4 trillion over the next decade.

Health economists have studied the link between health insurance and health outcomes and can estimate how many more preventable deaths Americans will suffer as health coverage declines, among other outcomes.

The Minnesota Department of Human Services recently released preliminary estimates that about 140,000 Minnesotans will lose their health insurance as a result of the legislation.

Additionally, due to upcoming subsidy expirations and rule changes for the Affordable Care Act’s insurance markets (“Obamacare”), health policy analysts at KFF have predicted an additional 5.1 million Americans will become uninsured nationwide, leading to an additional 13,000 uninsured Minnesotans.

Using this 153,000 figure, we can estimate that roughly one more Minnesotan will unnecessarily die per day as a result of losing coverage. Tens of thousands more will forego necessary care, miss medications, and rack up medical expenses they cannot afford.

Continued

Federal cuts threaten Georgia developmental disability support 

By Abby Kousouris, WRDW News, August 8, 2025

Parents of children with developmental disabilities are urging Congress to protect federal funding for the Georgia Advocacy Office, saying proposed cuts could leave thousands of families without critical support and legal protections.

More than 170,000 Georgians live with developmental disabilities, according to the Georgia Council on Developmental Disabilities. Many families say the first time they felt truly supported was when they discovered the Georgia Advocacy Office.

“I was completely alone. No one was there to help me,” said Maria Manning, a single mother whose son Jaylen is autistic and non-verbal. “The Georgia Advocacy Office—it was the first time I got any hope.”

Manning said Jaylen requires round-the-clock care. He can’t speak, gets easily frustrated, and depends on her to navigate appointments, manage his moods, and ensure his safety—all while she holds a job. With the office’s help, she was able to access resources, including in-home nursing and educational services.

“We’re not asking for handouts,” Manning said. “We just want help to make sure our kids are safe.”

The Georgia Advocacy Office is an independent, federally mandated protection and advocacy system that investigates abuse in group homes, jails, and psychiatric facilities; provides legal help in cases of discrimination or service denial; and educates people with disabilities on how to advocate for themselves. GAO also works to influence state policy and monitor institutions to ensure residents are treated with dignity and respect.

This year, GAO received more than $2.5 million in federal funds, according to the U.S. Department of Health and Human Services. But the latest federal budget proposal would eliminate its funding entirely.

Jim Bass said he feared for his family’s safety when his son Aaron, also autistic and non-verbal, began experiencing violent outbursts. Without guidance, navigating the system became a nightmare.

“There were eight people on one phone call, and no one could agree,” Bass said. “We didn’t know what questions to ask or who to trust. [The office] gave us the tools to fight for him.”

Today, Aaron lives in a transitional facility and is thriving. But Bass, like Manning, fears what happens if the office disappears—and what will happen to his son when he’s no longer able to advocate for him.

Read the full article here

Oklahoma - Broken Arrow group building new homes for people with intellectual and developmental disabilities

New residential cottages in Broken Arrow give people with intellectual and developmental disabilities the chance to live independently. The Gatesway Foundation says it can be a struggle for people with disabilities to find housing.

By Kaitlyn Deggs, News9, August 10, 2025

People with intellectual and developmental disabilities are getting a new place to call home later this year thanks to a Broken Arrow group.

The residential cottages are at the Gatesway Foundation campus in Broken Arrow near the Rose District.

Kelsi Poggenpohl is among the ones who will be moving in.

She’s excited about having her own space.

"It's going to be cool, because I'll have my own bathroom, I'll have my own shower, and stuff like that,” said Poggenpohl.

She says they will be a bit different from where they are currently living, in the main building.

"The new cottages, whenever we get to move into them, it's going to be a little different, because we're going to have a bunch of girls living with us,” said Poggenpohl. “It will just be girls only, no boys."

Edward Valencia hasn’t had to worry about housing for nearly 30 years since living at Gatesway.

"I know it is very hard for some people to find a place to live, and I'm very lucky to be here,” said Valencia.

He’s counting down the days until he gets to move into his new place.

"It's like having a million dollars,” said Valencia. “It makes me pretty happy. I've been here so many years, and I never want to leave this place."

Fixing Housing Shortages

Each cottage will have eight bedrooms and eight bathrooms.

The homes have been years in the making.

"It's a dream come true,” said Kristina Watkins, the Communications and Marketing Officer for the Gatesway Foundation. “This was really a passion project for all of us in the organization, especially our leadership team, and we have been talking about it for a few years now. To finally see it coming to life and to see it in person is really, truly, an amazing thing."

Leaders at Gatesway say finding housing for people with disabilities is tough, but this is a step in the right direction.

"Housing is scarce,” said Watkins. “We have friends that live in the community and we have searched for numerous homes for them, for a very, very long time. It is a difficult thing. If we are having trouble finding housing for friends, I know that many, many other people in the IDD population are having a very hard time."

She says it’s important to show the people who live there how much they are cared about.

"I love every single one of them so much,” said Watkins. “It is a blessing to walk onto this campus and be greeted with, 'hey, how are you, oh my gosh,' hugs, I love yous. They are a special, special community of people that people need to meet and know about."

Continued

New York - Mother with cerebral palsy struggles to hire aides after private equity takeover

By Gretchen Morgenson, NBC News, August 13, 2025

Renee Christian, a single mom with cerebral palsy, lives in Buffalo, New York, with her 12-year-old daughter. Although her condition forced her to spend most of her childhood at a nursing home, she has resided in her own home for years with the help of personal assistants she hires under a New York State Medicaid program.

In April, however, Christian’s life was upended when the state forced her and her assistants to work with a new company administering the nation’s largest consumer-directed personal assistance program, called CDPAP. One by one, she lost nearly half her assistants because they said they did not receive the proper pay for their work, Christian said. She now fears for her future living at home where she needs help getting dressed, doing laundry and cooking meals. 

“I’m trying to hire new staff, and I am very good at navigating technology,” Christian, 37, said. “But it’s hard when you have to tell your new hires, ‘I can’t guarantee you’re going to get paid on time or get the appropriate amount of hours.’”

Christian is not the only one affected by the state program’s recent takeover.

NBC News spoke with nine consumers and personal assistants who described multiple problems since Public Partnerships LLC (PPL) won the $1 billion, five-year contract in 2024, replacing roughly 600 entities that had been administering the program. The issues range from assistants receiving checks for zero dollars to problems arranging for direct deposit, onboarding new workers and clocking hours worked.

PPL, which has a staff of 1,400 on the New York program, is owned by two private equity firms. Its takeover as the program’s sole administrator triggered an avalanche of complaints from consumers unable to reach anyone to answer questions and assistants unpaid for hours they worked and unhappy with reduced health insurance benefits, according to lawmakers, consumer advocates and the consumers and assistants interviewed by NBC News.

Before the transition to PPL, roughly 280,000 consumers were participating in the CDPAP program, according to the New York Department of Health. Since PPL took over, some 80,000 have left the program, the department said.

Continued

Maryland - People with developmental disabilities seeing Medicaid coverage lapse more often

By Danielle J. Brown, Maryland Matters, August 8, 2025

An increasing number of people with developmental disabilities are falling through the cracks of Medicaid, going months without health care coverage because the state can’t keep pace with new applications and wrongful termination appeals.

Concrete numbers are hard to come by, but providers and developmental disability advocates attest to several dozen cases where recipients are left waiting to hear back from Medicaid officials about their coverage after submitting a new application or challenging what they believe are erroneous Medicaid terminations.

“Some participants, because of the backlog of scheduling cases to be heard, are waiting six months, eight months, an entire year to get resolved,” said Randi Ames, managing attorney for Disability Rights Maryland, which has been helping frustrated families and Medicaid recipients through various administrative hurdles.

Between limited staffing within the Maryland Department of Health and inadequate communication between branches of the agency, people with developmental disabilities are falling through the cracks and losing Medicaid coverage for crucial services.

“I know they’re aware of this,” Ames said of state officials. “They’re trying to work toward certain solutions, but we’re at that impasse where it’s just not happening quickly enough and people are being harmed.”

“People with developmental disabilities and the families and providers that care for them deserve accessible services and supports,” the department statement said. “It is a top priority of the Maryland Department of Health to continually improve the systems and processes for Medicaid waiver programs that provide services and supports to applicants, participants, and community providers.”

At issue are Medicaid waivers that allow people with developmental disabilities to get a wide variety of services, from live-in caregiver support to transportation, respite care, employment services and more.

Those waivers are jointly funded by state and federal governments, with each responsible for roughly 50% of the funding. The state is responsible for administering the program.

Each year, waiver recipients must prove to state health officials they are still financially eligible and still need coverage for their disability, in a process known as “redetermination.”

Over the last few years, the Department of Health and the Developmental Disabilities Administration have been struggling to pull out of several controversies while undergoing leadership changes and attempting to fill vacancies within those departments.

The Department of Health was also stung during the 2025 legislative session, as lawmakers made budget cuts to help close a $3 billion deficit. Those cuts included $164 million in fiscal 2026 from the Developmental Disabilities Administration, an agency that was experiencing unsustainable growth in enrollment and spending.

Despite the agency’s financial challenges, Ames believes that the backlog of application determinations is not “budget motivated.”

“Unfortunately, I think prior to the pandemic, the system was not great — but it was kind of functioning,” she said. Ames believes that the problems were exacerbated after the height of the COVID-19 pandemic, when the state had to determine whether 1.8 million Maryland Medicaid recipients, many added to the rolls during the pandemic, were still eligible in 2023, in a process known as the “Medicaid unwinding.”

She noted that during this time, the department lost experienced staff and added newer employees who had to learn the complex Medicaid determination process.

“When you don’t have the appropriate staff, if you have staff that is not knowledgeable or trained, it all starts to build up and cause this backlog,” Ames said.

Read the full article here

Maryland family struggles after son's disability benefits suddenly canceled

By Jeff Morgan, WMAR 2 News, August 13, 2025

A Maryland mother is fighting to restore her disabled son's Medicaid benefits after they were abruptly terminated despite her efforts. 

Sandy Schwartz has been caring for her 31-year-old son Matt since birth. He was born with a disability that requires constant care and leaves him mostly non-verbal.

"Matt's 31 and he's been in the system since birth, he's been disabled," Schwartz said.

For 31 years, Matt received assistance through a Medicaid waiver program that paid for his caregivers, covered doctor visits and prescriptions. That support ended on August 1.

"Early June, I received a packet requesting a lot of financial information, which they, the health department calls a redetermination," Schwartz said.

"The letter indicated that this information needed to be returned by July 31st or else his waiver would be discontinued," she said.

After weeks of gathering documentation, Schwartz submitted Matt's information on July 22 via secured email, believing she had met the deadline, but then a letter arrived.

"I received a letter stating that his medical assistance is now canceled as of August 1st," Schwartz said.

"I feel abandoned by the state. Because I am his main caretaker, I know he's gonna be taken care of either way. What I have to do, I'm gonna have to do it, but for his future, it scares me," said Schwartz.

Continued

NOTE: The following articles underscore Congress' concerns with eliminating waste, abuse, and fraud in the Medicaid system. It is important to note that both of these states uncovered millions in Medicaid fraud through investigations that began well before Congress held hearings on H.R.1, which actually cuts the amount of money that states have to seek out cases of fraud.

Louisiana paid nearly $10 million for health care dead Medicaid beneficiaries didn’t receive: audit

By Greg Larose, Louisiana Illuminator, August 12, 2025

A review of how Louisiana keeps its Medicaid rolls up to date found the state paid out benefits for more than 1,000 people over the past six years after they died. Nearly $10 million was paid to managed care organizations over that period, even though no health care services were actually provided.

The Louisiana Legislative Auditor conducted its study as part of Gov. Jeff Landry’s Fiscal Responsibility Program, which he has branded LA DOGE. It looked specifically at how state health officials keep track of when Medicaid beneficiaries die and whether outside data sources could help that process. 

When auditors used those additional sources, they found 1,072 beneficiaries who died between February 2019 and March 2025 and approximately $9.6 million spent collectively on their Medicaid coverage. Auditors said the actual spending figure is higher because their calculations only included dental coverage payments – and not health coverage – for the final eight months reviewed. 

According to the audit report, the Louisiana Department of Health relies on federal and state data sources to identify dead Medicaid beneficiaries. They include Louisiana Vital Records, the Social Security Administration, the Centers for Medicare and Medicaid Services, the state Department of Children and Family Services and the managed care organizations the state pays to deliver Medicaid offerings.

For its analysis, the Louisiana Legislative Auditor’s staff also used obituaries and identified 511 dead Medicaid beneficiaries the state missed in its reviews. Payouts to managed care organizations for this group totaled $5.22 million over the six-year period, and the median time between the beneficiary’s death and the most recent monthly payout to their managed care provider was more than 20 months.

Auditors found 168 more deceased Medicaid beneficiaries through the Social Security Administration’s Death Master File, a source the state health department has not used. The median time between the beneficiary’s death and the latest payment in this group was almost 800 days, according to the audit. 

The Legislative Auditor recommended the Louisiana Department of Health determine whether it should use third-party data sources as part of its eligibility determination process to identify deceased Medicaid beneficiaries. Out of the $9.6 million Louisiana paid for Medicaid services never provided, the audit identified $7.6 million through third-party sources.  

Continued

Minnesota - Blaine man convicted for $7 million Medicaid fraud scheme

Abdifatah Yusuf’s agency, Promise Health Services, LLC, did not have a building and operated out of a mailbox for years. But still, he claimed to provide millions in assistance to Medicaid recipients through their Home and Community Based Services (HCBS) program.

That was all a lie. On Tuesday, a Hennepin County jury found Yusuf guilty on six counts of theft by swindle. He is set to be sentenced at a later date.

In a news release, the Minnesota Attorney General Office said that Yusuf and his family members used Promise to "fraudulently obtain Medicaid funds by billing for services not provided, services that were billed based on false documentation, services that were over billed, services that were billed but lacked any documentation to support the services, and kickbacks provided to recipients to induce them to receive 'services' from the agency.”

With Yusuf in charge, Promise stole more than $7 million from the federal Medicaid program. Of those millions, $42,000 was spent at luxury car dealers, $80,000 at luxury clothing stores, and $387,000 in cash was withdrawn.

“Stealing money meant for poor people’s healthcare and using it to buy luxury cars and designer clothes is as shameful and disgraceful as it gets,” said Attorney General Keith Ellison in a statement. 

Continued

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Minnesota - Excerpt from Attorney General Keith Ellison's Statement on Medicaid Fraud

Press release from the Office of the Minnesota Attorney General, August 12, 2025

Attorney General Ellison’s Medicaid Fraud Control Unit works to uncover, investigate, and prosecute individuals or organizations that steal from Medicaid and that exploit, neglect, or abuse vulnerable victims. The Medicaid Fraud Control Unit receives 75% of its funding from the U.S. Department of Health and Human Services under a grant award totaling $4,409,872 for Federal fiscal year (FY)2025. The remaining 25%, totaling $1,469,955 for FY 2025, is funded by the State of Minnesota.

This past legislative session, Attorney General Ellison asked the Legislature for enhanced funding for the MFCU and for additional tools to better investigate and prosecute its cases, including changes to its subpoena authority that would be consistent with the authority county attorney’s have when conducting their investigations. Attorney General Ellison’s funding request would have allowed the Office to hire nine more staff in the MFCU, including seven new investigators and a new prosecutor. This request would have brought MFCU staffing levels in line with those of comparable states, as recommended by the U.S. Department of Health and Human Services Office of Inspector General. An HHS OIG audit has also found that Minnesota’s MFCU already punches above its weight: from 2020–22, Minnesota won the most convictions for provider fraud when compared with similarly sized states. 

Unfortunately, and despite 75% of the funding for these additional positions coming from the federal government, the Legislature denied Attorney General Ellison’s request to fund any new MFCU positions. The Legislature also did not enact any changes to enhance the MFCU’s authority to investigate and prosecute fraud cases, including its request for subpoena power matching that given to county attorney’s and penalties for medical assistance fraud that are consistent with penalties for other theft crimes codified in Minn. Stat. § 609.52. 

Read the statement from Attorney General Keith Ellison here

Adolescent to adult health care transition for persons with intellectual and developmental disability: current barriers, next steps

By Shewtha Ramachandran, Solveig Stensland et al, Frontiers in Pedieatrics, August 14, 2025

Abstract

The transition of health care from adolescence to adulthood is a challenging time, especially for persons with intellectual and developmental disability (IDD), where navigating health care transitions can be particularly difficult. Persons with IDD are an especially vulnerable population and they and their caregivers encounter barriers in obtaining high quality health care transition. These barriers result in the suboptimal utilization of health care transition services and consequent poorer health outcomes. Herein, we discuss barriers to obtaining high quality pediatric to adult transitional health care for persons with IDD. We then discuss next steps, some of them well recognized and others underappreciated, for addressing these barriers and thereby achieving an important public health need: the attainment of high quality pediatric to adult health care transition for persons with IDD.

Read the report here

Download the report here

NOTE: While most VOR families are familiar with the problems of this transition, it can be a good resource for families who are facing the transition in the years ahead.

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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.