May 22, 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.

Earlier this morning the House chamber passed its budget reconciliation legislation, H.R. 1, with a vote of 215-214. Representatives Thomas Massie (KY) and Warren Davidson (OH) were the two Republican "no" votes, and Republican Andy Harris (MD) voted "present".

The passage of this legislation has been the focus of much of the House's work the past few weeks including several lengthy and overnight committee sessions.  

Yesterday House leadership amended the document to appease the Republican holdouts. The key healthcare changes include:

• Medicaid work requirements kick in at the end of 2026 rather than the start of 2029
• Financial incentives for states to not expand Medicaid coverage to people near the poverty line.
• Expanded criteria for states that put federal payments at risk if they offer Medicaid coverage to undocumented individuals.

The final version of the House version. H.R. 1 now heads over to the Senate where it will face several challenges which include the Senate parliamentarian who will deem what portions of the legislation is germane based on the Senate's infamous Byrd rule. It will also be impacted by the Senate's own internal politics and the looming (and not quite firm) deadline for addressing the debt limit later this summer.  

But for the next week, both the House and Senate will be in recess and little activity is expected on budget reconciliation. HPS will be providing additional details on the budget reconciliation legislation over the course of the next couple of weeks.

More information about H.R.1 may be found here.

The most recent copy of the bill, along with the manager's amendment showing the changes to the bill, may be found on our website, www.vor.net

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

VOR's 2025 Annual Meeting

Sunday, June 8, 2025

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

on Zoom

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

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

Stay tuned for more details

Mike Johnson, Donald Trump get ‘big, 'beautiful’ win as budget passes House

By Elizabeth Elkind, Fox News, May 22, 2025

President Donald Trump's "one big, beautiful bill" passed the House of Representatives early on Thursday morning with few Republican defections.

It is a significant victory for House Speaker Mike Johnson, R-La., who navigated deep inter-party friction within the House GOP Conference to deliver a product from which few Republican lawmakers ultimately defected.

The bill is a sweeping multi-trillion-dollar piece of legislation that advances Trump's agenda on taxes, immigration, energy, defense and the national debt. It's sought to make a dent in the federal government's spending trajectory by cutting roughly $1.5 trillion in government spending elsewhere. The U.S. government is over $36 trillion in debt and has spent $1.05 trillion more than it's collected in the 2025 fiscal year, according to the Treasury Department.

The bill passed 215 to 214 with just two Republicans, Reps. Thomas Massie, R-Ky., and Warren Davidson, R-Ohio, voting against it. All Democrats voted against the bill as well, and House Freedom Caucus Chair Andy Harris, R-Md., voted "present."

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House GOP lawmakers are proposing nearly $1 trillion in cuts to Medicaid and food stamps. Here’s who could be impacted

By Tami Luhby, CNN, May 21, 2025

House Republicans are pushing to slash nearly $1 trillion from two of the nation’s bedrock safety net programs, Medicaid and food stamps, as part of their sweeping package aimed at enacting President Donald Trump’s agenda. If the legislation is approved, millions of Americans could lose access to these benefits as a result of a historic pullback in federal support.

Trump has repeatedly vowed not to touch Medicaid, while GOP lawmakers insist that their proposals would largely affect adults who could – and should, in their view – be employed. But the actual impact would likely hit a far broader range of Americans, including some of the most vulnerable people the GOP has promised repeatedly to protect, experts say. They include children, people with disabilities and senior citizens.

A sizeable share of the US population depends on these programs. More than 71 million people are enrolled in Medicaid, and roughly 42 million Americans receive food stamps, according to the federal agencies that oversee them.

Hospitals would also feel the financial fallout of the Medicaid cutbacks, which could prompt some to raise their rates for those with job-based insurance and others to close their doors.

States would have to shoulder more of the costs of operating these programs, which could force them to make some tough decisions. Among their options could be slashing enrollment, benefits and provider rates in Medicaid or pulling back on residents’ access to food stamps. They might also shift spending from other state-supported programs such as education and infrastructure or hike taxes.

In addition, grocery store owners are warning that cuts to the Supplemental Nutrition Assistance Program, or SNAP, as food stamps are formally known, could harm local economies and cost jobs.   

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Fact-checking Republican and Democratic claims about Medicaid cuts in the GOP bill

By Tami Luhby, CNN, May 21, 2025

Let’s look at each side’s claim.

Trump has long vowed that Republicans would not harm Medicaid, though they would look to root out waste, fraud and abuse.

After meeting with Republicans and GOP lawmakers on Tuesday, Trump was asked by a reporter whether working class voters who supported him would lose their health coverage.

“Oh, they won’t lose their health insurance,” Trump said.

And earlier on Tuesday, the president told reporters, “We’re not doing any cutting of anything meaningful. The only thing we’re cutting is waste, fraud, and abuse. With Medicaid – waste, fraud, and abuse. There’s tremendous waste, fraud, and abuse.”

Facts First: Trump’s claim that people won’t lose health insurance from the deep cuts contained in the bill is disputed by a preliminary Congressional Budget Office report and health policy experts. CBO’s early analysis of the Energy and Commerce Committee proposals found that 10.3 million people would lose Medicaid coverage after 10 years, though some would find policies elsewhere. Overall, 7.6 million more people would be uninsured, CBO said.

Last week, Senate Minority Leader Chuck Schumer used a figure several of his colleagues have also cited about the impact of the proposed House GOP cuts to Medicaid.

“House Republicans unveiled their plan for the largest cut to Medicaid in American history. 14 million Americans, at least 14 million, would be ripped off of their health insurance under this proposal,” Schumer said in a press briefing.

Facts First: The Democrats’ assertions need context because their number factors in the expiration of the enhanced Obamacare premium subsidies at the end of 2025, in addition to the impact from the Medicaid cuts. The Republicans did not include extending the enhanced subsidies in this package, though it is possible they will do so before year’s end. In addition, the Democrats’ number includes a provision in the House GOP bill that would codify a proposed Trump administration rule that is also expected to increase the number of uninsured Americans.

The House GOP bill would make several notable changes to Medicaid, the public health insurance program for low-income Americans. The most consequential would be introducing work requirements for the first time in the program’s 60-year history. Certain recipients ages 19 to 64 who gained coverage through the Affordable Care Act’s expansion of Medicaid would have to work, volunteer or be enrolled in school or a job training program at least 80 hours a month or qualify for an exemption to continue their coverage.

The package would also postpone the implementation of a Biden administration rule aimed at streamlining Medicaid eligibility and enrollment until 2035. Such a delay could make it harder for people to enroll in the program and renew their coverage.

Plus, it would mandate that states check Medicaid expansion recipients’ eligibility every six months, instead of annually, and require that certain Medicaid expansion enrollees pay for a portion of their care.

House Republicans are also calling for codifying a Trump administration proposal that would make changes to the Affordable Care Act enrollment process, including shortening the open enrollment period and eliminating the ability of low-income Americans to sign up year-round.

All told, the Medicaid and Obamacare provisions put forth by the House Energy and Commerce Committee, along with not renewing the enhanced subsidies, would leave at least 13.7 million more people uninsured in 2034 than would otherwise be the case, according to an early CBO estimate.

(The claims have previously been reviewed by outlets including FactCheck .org and PolitiFact.)  

Read the full article here

There’s a reason Republicans want to hide what’s in their newly passed megabill

By Michael A. Cohen, MSNBC. May 22, 2025

Early Wednesday, when most Americans were snuggled in their beds, Republicans in the House of Representatives were working hard to take away the health care of millions of Americans, blow a $3 trillion hole in the budget deficit and make the wealthiest people in America richer and the poorest Americans poorer.

If this sounds like hyperbole, it’s not. The GOP-controlled House Rules Committee convened at 1 a.m. Wednesday morning to discuss a bill that hasn’t been fully drafted and the provisions of which were still part of intense negotiations. Indeed, the real work on the legislation was happening behind closed doors as House Speaker Mike Johnson, R-La., tried to cobble together enough votes to pass something, anything, so he could meet his self-imposed deadline for a floor vote by Memorial Day. Late Wednesday, GOP leaders released yet more significant changes to the bill, and on Thursday morning the full House passed the bill by a single vote.

The CBO estimated Tuesday that the Medicaid cuts could cause roughly 8 million people to lose their health insurance coverage, and that number could rise to 15 million thanks to other provisions in the legislation. The amendments revealed Wednesday, writes Larry Levitt, executive vice president for health policy at KFF, surely “would lead to more people losing health insurance.” But Republicans scrambled to vote Thursday before the CBO could update its totals.

All this is being done to extend the Trump tax cuts, which disproportionately benefit wealthy people. The impact of the GOP’s bill is extraordinary in both its cruelty and its extreme inequality. According to the CBO’s estimate, household resources for the poorest people would decrease by 4% over the next eight years, while the richest people’s household resources would increase by 4%.

If enacted, the bill would constitute the largest transfer of wealth from the needy to the wealthy in American history.

Read the full article here

States Drop Effort To Overturn Section 504, But Continue To Challenge Disability Protections

By Michelle Diament, Disability Scoop, May 19, 2025

Seventeen states are no longer seeking to invalidate one of the nation’s key disability rights laws, but advocates say threats remain.

A lawsuit brought by Texas and 16 other states garnered significant attention earlier this year because it sought to declare Section 504 of the Rehabilitation Act unconstitutional.

The 1973 law bars discrimination on the basis of disability at any entity that receives federal funds. It has a wide reach affecting health care, public education, housing, transportation and much more.

Disability advocates pushed back against the states’ move to overturn the statute, warning that a successful challenge to the constitutionality of Section 504 could also undermine other laws including the Americans with Disabilities Act.

After facing backlash, the states are withdrawing their constitutional claim.

“Plaintiffs further clarify that they have no intention to seek any relief from this Court on Count 3 (Section 504 is Unconstitutional) of their Complaint, including that in their Demand for Relief,” reads a recent status update the state attorneys general filed with the U.S. District Court for the Northern District of Texas.

However, the states are still pursuing the broader case, now known as Texas v. Kennedy, which was filed in response to an update to Section 504 regulations that the Biden administration finalized last year.

The decision to drop the constitutional claim “shows the power of the disability community’s advocacy,” said Shira Wakschlag, senior executive officer for legal advocacy and general counsel at The Arc. “However, the case remains a significant threat to the rights of people with disabilities, as the 17 states continue to challenge the updated Section 504 regulations covering, among other things, the right to receive services in the community, accessible medical equipment and prohibiting medical discrimination against people with disabilities.”

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Trump administration defunds autism research in DEI and 'gender ideology' purge

By Robin Respaut and Jaimi Dowdell, Reuters, May 16, 2025

Health Secretary Robert F. Kennedy Jr has vowed to address rising U.S. autism rates as a top health priority for the Trump administration.

Last month, he pledged $50 million to help identify environmental causes of autism, to be issued as grants by the National Institutes of Health, and has announced plans to create a national “autism registry.”

Yet during the first four months of 2025, the NIH has reduced funding for autism-related research by an estimated $31 million to $116 million from $147 million in the same period in 2024, according to a Reuters analysis of NIH data. The spending is 26% lower than the prior four-year average for that period, the analysis found.

In some cases, the NIH has canceled projects because they involved diverse populations, studied differences in gender or took place at research universities currently under scrutiny by the Trump Administration. For others, funding for autism projects has simply halted or money for new projects has not been approved.

Among the eliminated or defunded annual grant programs identified by Reuters:

• A $509,000 grant studying the genetic factors that impact mental health and gender diversity in 10,000 autistic and non-autistic people
• A $211,000 grant to develop interventions to improve the mental health of autistic adults
• A $548,000 grant exploring the autism risk among children of women exposed to childhood abuse

Reuters analyzed nearly 300,000 projects funded by the NIH since 2021 to identify autism research for its review. The agency has funded about 4,600 autism-related projects since 2021, with an annual average of $525 million over the past four years.

Reuters calculated its funding estimates for autism-related research by counting NIH grants awarded between 2021 and 2025 for projects with the terms “autism” or “autistic” in the titles or abstracts. Seven autism researchers and one former NIH employee said the analysis provides a fair assessment of funding trends.

Among the autism-related grants reviewed by Reuters, five totalling more than $10 million were listed as “Terminated” by “Department Authority” on the NIH’s website. The grants, which described research into “sexual and gender minority autistic adults,” auditory hearing, and genetic risks among people with autism, were all canceled within two weeks of each other in March.

The NIH’s site did not provide a reason for the terminations. The Reuters analysis could not determine the reason for the reduction in funding, whether an existing project was halted pending review or if money for a new grant was being held back.

More autism research could also be impacted by the Trump administration’s withholding of federal funding from research universities, such as Harvard University or Columbia University’s Autism Center for Excellence, which receives funding from the NIH.

Taken together, autism researchers fear funding cuts will delay progress in discovering the possible causes and best treatments for autism.

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70% of the DOJ's Civil Rights Division lawyers are leaving because of Trump's reshaping

By Ryan Lucas, NPR, May 19, 2025

The Justice Department's Civil Rights Division is in upheaval amid a mass exodus of attorneys as the Trump administration moves to radically reshape the division, shelving its traditional mission and replacing it with one focused on enforcing the president's executive orders.

Some 250 attorneys — or around 70% of the division's lawyers — have left or will have left the department in the time between President Trump's inauguration and the end of May, according to current and former officials.

It marks a dramatic turn for the storied division, which was created during the civil rights movement and the push to end racial segregation. For almost 70 years, it has sought to combat discrimination and to protect the constitutional rights of all Americans in everything from voting and housing to employment, education and policing.

Now, the administration is redirecting the division to enforce Trump's executive orders, including ending the alleged radical indoctrination in schools, defending women from "gender ideology extremism," and combatting antisemitism and purported anti-Christian bias.

Five current or former department officials, most of whom spoke on condition of anonymity for fear of retribution, say the current effort amounts to the dismantling of the division and its traditional mission.

"The Civil Rights Division exists to enforce civil rights laws that protect all Americans," said Stacey Young, a former division attorney who left the department in late January. "It's not an arm of the White House. It doesn't exist to enact the president's own agenda. That's a perversion of the separation of powers and the role of an independent Justice Department."

It is normal for the division's priorities to shift from administration to administration, particularly from one party to another. But the changes underway now are far beyond the normal recalibration, current and former employees and outside observers say.

The changes are being implemented by the division's new head, Harmeet Dhillon, a conservative attorney whom Trump appointed and the Senate confirmed in April.

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CMS Is Not Systematically Tracking Whether States Return Federal Shares of Medicaid Managed Care Remittances         

Office of the Inspector General of the U.S. Department of Health and Human Services, May 16, 2025

Why OIG Did This Review

• States can require Medicaid managed care plans (plans) to spend at least a certain percentage of their payments on enrollees’ health care—known as a minimum medical loss ratio (MLR). States can also require plans to refund money when plans fail to meet this minimum MLR—called an MLR remittance.
• When a State receives an MLR remittance from a plan, the State must return some of it to the Federal government. This Federal share is based on the rate at which the Federal government matched the State’s payment for Medicaid services. These amounts owed to CMS can total hundreds of millions of dollars.
• However, we identified concerns that CMS could not readily determine whether and when States return the Federal share of MLR remittances to CMS, so we looked further into CMS’s processes for this.

What OIG Found

CMS cannot readily or systematically track whether States return to CMS the required Federal shares of MLR remittances. To respond to OIG’s request for MLR remittance information, CMS needed to reach out to States to determine whether they had returned hundreds of millions of dollars owed. Three factors contribute to these gaps in MLR oversight:

• CMS’s financial reporting system does not contain dedicated data fields for MLR remittance information that CMS can use to determine whether States returned the Federal shares of MLR remittances.
• CMS staff do not routinely share information with each other about the MLR remittance amounts reported or returned.
• CMS lacks procedures to track when to expect the Federal share from each State that owes an MLR remittance—which hinders oversight of timely returns

What OIG Recommends

1. Obtain the Federal shares of MLR remittances from States that failed to return these amounts.
2. Develop the capacity to systematically track and readily determine the amounts of the Federal shares of MLR remittances that States returned to CMS.
3. Improve internal communication to confirm that States return the Federal shares of the MLR remittance amounts reported annually to CMS.
4. Routinely confirm that States return the Federal shares of State-reported MLR remittance amounts.
5. Develop procedures to track (a) when each State is expected to return the required Federal shares of MLR remittances owed and (b) whether States have returned the Federal shares timely.

CMS concurred with the five recommendations. 

Read the press release here

Download the full report here

Download the report highlights here

Students with Disabilities Left Behind: The Dismantling of the Department of Education

By Taylor Hamilton, Women's eNews, Jay 18, 2025

Even before Donald Trump took office, Republicans have been aiming to dismantle the Department of Education since its inception in 1979. Ultimately, on March 11, 2025, Department of Education Secretary Linda McMahon ordered a Reduction in Force of the Education Department, resulting in almost half of the Department’s staff (nearly 2200 people) being put on leave or taking voluntary retirement/resignation.

She justified this action by expressing her desire to reduce “bureaucratic bloat”. More recently, on April 10, over 1300 employees on leave were served with “reduction in force (RIF) action” terminating their positions. They were told that these cuts were not merit-based, but were due to the shrinking number of positions in the Department. McMahon justified the RIF in an interview with Fox News by saying, “If you were in a private sector, this would be an audit”.

However, the Education Department is not part of the private sector. Unlike businesses in the private sector, the Department of Education assumes responsibility for funding programs that ensure justice in public schools. If the Department’s aim is to improve the lives of students, what is the possible motivation for the Trump Administration’s dismantling efforts, and how will they affect students with disabilities?

What the Department of Education Isn’t

According to McMahon, the reason the president wants to shutter the department is because he wants to ensure federal resources are directed to the states and specifically to parents, students, and teachers.  However, only 14% of funding for public schools currently comes from federal funding, and this funding is for programs that support the most vulnerable students, such as those in low-income schools and students with disabilities. 

By combatting the involvement of the federal government in school curricula, the Administration may be referring to the Race to the Top program, which was authorized by former President Barack Obama. This measure encouraged schools to adopt a federal government-created Common Core—a set of national standards that students had to achieve to ensure academic success. However, Congress deemed this measure too invasive and, as such, passed the Every Students Succeeds Act (ESSA) in 2015. ESSA deemed that the federal government could not develop curricular decisions and standards for public schools. These decisions would be made by state and local governments instead. So, in effect, the President’s efforts to dismantle the Education Department would reinforce a law that is already in place, and the abolition would fall short of Trump’s goals.  

Instead, it is the President’s intention to deny schools the ability to teach subjects he deems inappropriate, such as “Critical Race Theory and transgender ideologies”. However, the federal government does not currently control the subjects taught in schools; this responsibility falls to the states. Thus, the effect the President intends to have by abolishing the Department would actually give more power to the federal government to control curriculum, the exact opposite of what he promises to do.  

 What does the Education Department Do for Students with Disabilities?

The Department of Education supports students with disabilities through the funding of supportive programs like the Individuals with Disabilities Education Act (IDEA). This funding is pivotal since 15% of students have a disability, and 95% of students with disabilities learn in public schools. Approximately 13% of a school’s budget for students with disabilities comes through IDEA.

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Judge Halts Trump’s Move to Dismantle Education Department

By Matt Barnum and Jan Wolfe, The Wall Street Journal, May 22, 2025

A federal judge has blocked the Trump administration’s wide-scale efforts to dismantle the Education Department, saying it effectively gutted the agency without Congress’s consent.

“This court cannot be asked to cover its eyes while the Department’s employees are continuously fired and units are transferred out until the Department becomes a shell of itself,” wrote U.S. District Judge Myong Joun in Boston.

Joun said the Education Department’s cuts have already undermined education research, civil rights enforcement and financial aid support.

Thursday’s ruling ordered the administration to reinstate department employees who had been fired and prohibited it from implementing Trump’s executive order directing Education Secretary Linda McMahon to dismantle the agency.

It is the latest legal setback for the Trump administration, which has faced a barrage of lawsuits from progressive groups and politicians. Last month, judges in Maryland and New Hampshire blocked an effort by McMahon to end diversity, equity and inclusion, or DEI, programs in schools by threatening to withhold federal funding.

Continued

The stories below are further installments in a series from NorthJersey. com, "Hidden At Home"

Despite NJ group home care lapses, state often fails to act, lets companies grow

By Jean Rimbach and Ashley Balcerzak, North Jersey .com, May 17, 2025

Key Points:

• Companies don't always meet residents' basic needs, despite receiving yearly payments for each person that can top $500,000. People with disabilities don’t always get food, water, medicine
• The state investigates only 2% of the roughly 14,000 concerns reported each year about group homes — only the worst cases, such as broken bones, burns or a collapsed lung.
• New Jersey rarely uses its existing powers to keep companies in check. In the past decade, the state has ordered only a handful of companies to shutter unsafe homes or pause accepting new residents.

Jacquelyn Kaminski’s hair was often greasy, her weight dropped dangerously, and she had bites and bruises from attacks by other residents at her group home for adults with intellectual and developmental disabilities. 

The staff didn’t change Jacquelyn out of wet undergarments or wipe her thoroughly. The house where the 34-year-old lived in Wayne, run by Broadway Group Home LLC, was dirty and unkempt, with feces on the floor, and windows open to mask the smell.  

And after caregivers repeatedly failed to give Jacquelyn her epilepsy medication, she landed in the hospital.  

Initially, state investigators did not conclude that neglect caused her hospitalization — but they reversed that decision 15 months later when Jacquelyn’s parents pressed for more information. 

State officials had been aware of serious concerns at Broadway for some time. But the company’s licenses to run group homes are unblemished — and the state has allowed Broadway to expand. 

Jacquelyn’s story highlights the many failings in New Jersey’s group home system, where the state reacts slowly, if at all, to problems and troubling lapses in care. 

Previously, NorthJersey. com detailed how some residents of state-licensed group homes and supervised apartments die alone, unsupervised — and in avoidable ways. It has also identified problems with medication and showed the dangers of a low-paid workforce plagued by churn.  

Now we explore an estimated $1.5 billion system where providers largely police themselves, where consequences are few, and where a lack of accountability can have devastating results for vulnerable residents such as Jacquelyn.  

Our investigation, which included the review of thousands of state, family and law enforcement records, found that: 

• Companies are not always meeting the basic needs of residents, despite receiving yearly payments for each person that can top $500,000. People with disabilities don’t always get food, water, medicine, supervision or specialists required under their care plans.  
• People with disabilities can live in homes with mildew, bedbug infestations and broken furniture. Inspectors find foul and unsanitary conditions, even though group homes usually have advance warning of the visits that determine whether they keep their license. 
• New Jersey rarely uses its existing powers to keep companies in check. In the past decade, the state has ordered only a handful of companies to shutter unsafe homes or pause accepting new residents. It shut down one company, only after years of documenting dangerous conditions. 
• Providers remain in the driver’s seat — even when under increased state scrutiny for health, safety and financial concerns. The state allowed one company to triple the number of homes it runs. Another company successfully rebuffed the state’s proposal to bring in an outside monitor.  
• Group homes investigate themselves a majority of the time, raising questions of credibility. The state investigates only 2% of the roughly 14,000 concerns reported each year about group homes — only the worst cases, such as broken bones or a collapsed lung. 

The best glimpse into abuse and neglect in the group home system is New Jersey’s incident database that tracks concerns reported by providers and the public. The data includes situations ranging from unplanned hospitalizations to serious injuries and attacks. 

But NorthJersey. com found that few allegations called in to the department’s abuse and neglect hotline make it into this system, which was launched in mid-2018. Of more than 5,000 calls, the state created 354 incident reports. 

Read the full article here

Finding a fix: How could NJ group home reform bills impact the industry?

By Jean Rimbach and Ashley Balcerzak, North Jersey .com, May 22, 2025

Key Points:

• The bills fail to address an investigations system rife with conflicts and take a narrow view of a complex problem.
• In place of action, two years of study is baked into the reforms, which offer little in the way of additional funding.

Burns and broken bones. Understaffed homes and persistent medication errors. Preventable deaths and basic needs such as food and cleanliness ignored. 

The failings of New Jersey’s $1.5 billion group home system for adults with developmental and intellectual disabilities are vast and often heartbreaking, NorthJersey. com found in its yearlong investigation Hidden at Home ― and the solutions are both elusive and fragmented. 

Legislation to make monitoring cameras more readily available in group homes has languished in Trenton for years. A law requiring the state to make six unannounced visits a year was scaled back to two before passage in 2017. And a requirement to call 911 in an emergency hits low-paid workers ― and not the group home company ― with fines when those calls are not made. 

And as NorthJersey. com has reported, the state Department of Human Services, which oversees the group home system, rarely uses the powers at its disposal to keep problem companies in check. 

The latest legislative fixes, a seven-bill package now working its way through the process, includes one that would allow the first-ever fines to be levied against group home providers.

But the bills don’t change how investigations of abuse, neglect and exploitation of group home residents are conducted, a major complaint of families and advocates who want to see a system overhaul. Now, most investigations are handled by the group homes themselves. In place of action, two years of study is baked into the reforms, which offer little in the way of additional funding. 

“Most often, these allegations are investigated ... within the agency themselves and by DHS,” said Yana Mermel, whose daughter suffered abuse and neglect in a group home, detailed in an NJ Advance Media report. “And essentially, what ends up happening is a situation where it's a fox guarding the henhouse.” 

What’s more, the package is largely scripted by the Department of Human Services, which long ago lost the trust of many families who rely on it to serve their loved ones with conditions such as autism, cerebral palsy, and Down syndrome.

“Most of this is their initiative,” said Sen. Joseph Vitale, D-Middlesex, the sponsor of the bill package and chair of the Senate Health, Human Services and Senior Citizens committee. “So this is their idea for systemic reform.” 

Group home providers, meanwhile, have successfully beaten back one of the most important bills in the package, which aims to control spending and executive pay. They also won changes to a measure that imposes fines, limiting the amount of the sanctions. That bill, S3750, moved out of committee on May 19.

Many advocates and families want more. 

“This is a positive step forward... It introduces mechanisms of accountability and financial consequences, but it doesn't address the root cause of the problem,” said Pat Miller, New Jersey chair of the National Council on Severe Autism.

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Maine - Shocking DHHS Report Details 2,100 Allegations of Abuse Targeting the Intellectually Disabled in 2024

By Steve Robinson, Maine Wire, May 16, 2025

More than 2,100 allegations of abuse, neglect, and exploitation were reported in fiscal year 2024 among adults with intellectual disabilities or autism receiving services under Maine’s Medicaid program, according to a new state report.

The stunning level of abuse was published with little public handwringing from Democratic lawmakers in a report submitted to lawmakers last month.

The report — bearing the anodyne name “2025-2026 Biennial Plan for Adults with Intellectual Disabilities or Autism” — downplays the significant fact that a massive percentage of adults with intellectual disabilities or autism have reported caretaker neglect, physical abuse, emotional abuse, and exploitation.

The abuse occurred within MaineCare’s Home & Community-Based Service (HCBS)

Waiver programs, which are provided under MaineCare’s Section 21 comprehensive waiver and Section 29 support waiver.

The number of abuse reports in FY 2024 — 2,157 total for clients receiving Section 21

and/or Section 29 services at the time the report was filed with Adult Protective Services (APS) — is significant considering the number of adults enrolled in the programs.

There are only 3,420 individuals enrolled in Section 21 and 2,640 enrolled in Section 29 — meaning APS received 2,157 reports of abuse within programs that provide home-based care for just 6,060 individuals.

Continued

The lives of 1.4 million Floridians are in our senators’ hands: Don’t cut Medicaid | Opinion  

By Joseph Macbeth, South Florida Sun Sentinel, May 21, 2025

As president of the National Alliance for Direct Support Professionals (NADSP), I represent more than a million direct support professionals (DSPs) across the country — individuals who provide daily, hands-on support to people with intellectual and developmental disabilities, including autism.

These professionals are the backbone of care for some of Florida’s and our nation’s most vulnerable citizens. They assist with the most essential activities of daily life — helping people eat, bathe, take their medications, go to work, participate in the community, and live independently in homes rather than institutions. DSPs are not just caregivers; they are lifelines. They ensure that people with disabilities are safe, included and treated with dignity.

But the proposed $715 billion in Medicaid cuts being debated in Congress threatens their work. These cuts are not just about numbers — they are about lives. Florida stands to lose health care coverage for more than 1.4 million people.

To senators Rick Scott and Ashley Moody, I must ask: Where will these 1.4 million Floridians go?

Where will the thousands of people with disabilities — who depend on home- and community-based services and health care funded by Medicaid — turn when their support disappear?

The people we support are often medically fragile and require consistent, specialized support. Without Medicaid, these services vanish. Families are left scrambling. People may be forced into institutions or emergency rooms — or worse, onto the streets. We have seen it before, and we cannot let it happen again.

Before the Affordable Care Act, our hospitals were flooded with patients seeking emergency care they could not afford — uncompensated care that drove up costs for everyone.

Medicaid changed that with Medicaid expansion in most other states by expanding access to preventive, coordinated and home-based care. It saved lives, stabilized families, and strengthened communities. We cannot go backward.

DSPs already work under immense pressure, often earning poverty wages despite doing work that is complex, personal and critical. Medicaid cuts would force provider agencies to reduce hours, lay off staff, or close entirely — collapsing the fragile support systems people with disabilities depend on. The consequences would be catastrophic.

At the same time, this legislation proposes tax breaks for the wealthiest Americans. Is that moral? Is it justifiable to give billionaires more while taking away the most basic supports from the elderly, children and people with disabilities?

To every Floridian reading this, I urge you: Call senators Scott and Moody. Ask them why the working poor, the elderly, children and people with disabilities are being sacrificed for political convenience. Ask them where they expect the most vulnerable among us to go when Medicaid is gutted.

In Florida, the public knows better. According to a 2022 survey by the Florida Policy Institute, 78% of Florida voters, including 69% of Republicans, support expanding Medicaid. This is not a partisan issue — it is a moral one.

Florida’s senators hold the power to stop this humanitarian crisis. Rick Scott and Ashley Moody, your votes in the coming days will decide whether Florida chooses compassion and common sense — or callous disregard.

Continued

Funding cuts threaten services for Illinois' most vulnerable

By Dillon Valencia, WREX News, May 20, 2025

The Goldie Floberg Center, which serves individuals with intellectual and developmental disabilities, is sounding the alarm over proposed state budget changes that could severely impact care for some of Illinois’ most vulnerable residents. Goldie Floberg operates more than 20 group homes across Winnebago County and supports over 70 individuals.

The organization says while the state is giving their service providers a raise, they’re taking away funding from critical service hours that their residents rely on. 

On one hand, the state has allotted a $20 million wage increase for support staff for similar agencies across Illinois. For the Goldie Floberg Center, that's a boost of $130 thousand dollars for their workers.

However, the proposed budget also eliminates $32 million worth of patient support hours statewide, leaving providers like Goldie Floberg to face deep service reductions. According to the organization, residents would lose $148 thousand dollars worth of care.

John Pingo, CEO of Goldie Floberg and a 30-year veteran of the organization, says the math doesn’t add up for those relying on 24/7 care.

“Imagine I gave you 50 cents, then I pulled $1 at the same time out of your wallet. Would that feel like you got an increase? No,” said Pingo.

“It’s hard not to get a little bit angry when you see that the State of Illinois is trying to balance the budget on the backs of individuals with intellectual development disabilities, some of our most vulnerable citizens.”

Continued

Advocates warn that proposed Medicaid cuts threaten Georgia’s safety net programs 

By Jill Nolin, Georgia Recorder, May 21, 2025

Advocates are bracing for potential cuts to Georgia’s safety net programs under the GOP’s “big, beautiful bill” moving through Congress, though it remains to be seen what changes to programs like Medicaid will end up in the final version. 

As is, the federal measure would cut more than $600 billion over the next decade from Medicaid, the government health insurance program for low-income Americans and people with disabilities. The savings would go toward extending President Donald Trump’s 2017 tax cuts. 

Even though the bill appears to be designed to chip away at Medicaid’s expansion under the Affordable Care Act, advocates and others say states like Georgia that did not fully expand Medicaid could still feel the effects of the cuts.

In Georgia, the program covers about 2.2 million people, mostly providing health care coverage and services for children, older Georgians and people with disabilities. In recent years, the program was slightly expanded to include adults who complete 80 hours of work, job training, education or community service every month.

D’Arcy Robb, executive director of the Georgia Council on Developmental Disabilities, said Tuesday that she is not worried about funding for Medicaid-funded services that are considered mandatory, like for care in a nursing home.

But Robb said she is concerned about Medicaid services that are considered optional, such as funding for home and community based services that are designed to keep people with disabilities out of nursing homes. There are already about 8,000 people in Georgia waiting to receive those services, with state lawmakers funding 150 new waivers this year.

“We can’t afford to lose any money. We’re already scraping the bone, and we’re already seeing families that are going to extreme means to support their loved ones,” Robb said.

These waiver programs took a hit during the Great Recession, with Georgia joining all other states in scaling back services to help balance their budgets. Robb is fearing a repeat if a big cut to Medicaid makes it into the final bill.

“I’m not trying to imply that states are going to cut services to people with developmental disabilities because they want to. I don’t think anybody wants that,” Robb said.

“But the reality is the states have to balance their budgets, and history has shown us that when Medicaid takes a big cut on the national level, states have to cut somewhere. One of the places they can cut is waivers,” she said.

Continued

Wisconsin - My son’s life depends on Medicaid. Program cuts put his future in jeopardy.

By Carol Chapin, Wisconsin Examiner, May22, 2025

This week, the U.S. House of Representatives and Wisconsin’s Republican members — U.S. Reps. Bryan Steil, Derrick Van Orden, Glenn Grothman, Scott Fitzgerald, Tony Wied and Tom Tiffany — are supporting a budget that would slash federal Medicaid funding by $790 billion, according to the latest Congressional Budget Office estimate. 

For my family, this isn’t just a number on a budget sheet somewhere in Washington. For us, it is deeply personal. These cuts have the potential to devastate our lives.

My son Liam lives with a developmental disability. Thanks to Medicaid — and more specifically, a category known as Home and Community-Based Services (HCBS) — he’s able to live independently in his own apartment. He receives support each day to help him manage meals, take his medications, and safely get to his two part-time jobs using paratransit.

He volunteers at a local food pantry. He makes art. He participates in community programs for people with disabilities. He takes community college courses and continuing education classes, and his goal is an associate’s degree in architectural technology. He’s proud to call Madison’s Eastmoreland neighborhood home.

All of this is possible because of Medicaid. But the Home and Community-Based Services that make his life possible are considered “optional” under federal Medicaid law. They’re on the chopping block if Congress moves forward with the proposed cuts.

If the federal government cuts its share of Medicaid funding, our state will face a painful decision. We will either use more state dollars to fill the gap, or make cuts — fewer people covered, fewer services, lower provider pay.

Even with Medicaid, it took our family years to find a supportive care agency with an opening. These services are already stretched to the limit. Some Republican members of Congress are advocating for hard caps on Medicaid costs which would further degrade these essential programs.

Medicaid is not just an insurance program. It is the infrastructure that makes independent living possible for people with disabilities. And it is already under strain. Here in Wisconsin, some disability advocacy organizations have gone months without federal funding due to administrative budget cuts. The signs are all around us: The safety net is fraying. 

Read the full article here

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VOR SUPPORTS:

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

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

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

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

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

Accelerating Kids' Access to Care ActTo amend titles XIX and XXI of the Social Security Act to streamline the enrollment process for eligible out-of-state providers under Medicaid and CHIP.

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

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

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

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

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

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



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

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

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

VOR OPPOSES:

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