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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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MACPAC: Medicaid Home- And Community-Based Services Users Reach 2.5 Million As Institutional Care Declines
By Morgan Gonzales, Home Health Care News, July 28, 2025
The number of Medicaid beneficiaries using home- and community-based services (HCBS) has increased in recent years, reaching over 2.5 million individuals – while the number of beneficiaries utilizing institutional long-term services and supports (LTSS) declined.
HCBS use increased by 2.6% of all Medicaid beneficiaries from 2019 to 2021, according to the Medicaid and CHIP Payment Access Commission’s (MACPAC) July brief. The number of beneficiaries using institutional long-term services and Supports (LTSS), meanwhile, declined from 1.8 million in 2019 to 1.5 million in 2021.
The report found that home-based services were the second most used HCBS category, making up 24.4% of all HCBS services.
Researchers also identified that the demographics of HCBS users differed from those of the overall Medicaid population.
Medicaid spending on HCBS has increased in recent history, and in 2021 Medicaid spending on HCBS reached $82.5 billion compared to $66.6 billion on institutional care. Per-user spending was lower for HCBS, however. Total spending on HCBS per user in 2021 was over $32,000, while total spending on institutional LTSS per user reached over $45,000.
Medicaid’s budget for HCBS is now in question, with the One Big Beautiful Bill Act (OBBA) containing Medicaid cuts totalling $1 trillion over the next decade.
The Centers for Medicare and Medicaid Services (CMS) has also recently announced that it will no longer approve funding for new Medicaid workforce initiatives focused on home- and community-based services.
Read the full article here
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Medicaid changes will hurt family caregivers, experts warn
By Alejandra O'Connell-Domenech, The Hill, July 27, 2025
Medicaid cuts under President Trump’s sweeping tax and spending package will harm family caregivers, experts warn, by reducing access to health care for themselves and the people they care for, which could then lead to more caregiving responsibilities.
The Congressional Budget Office estimates the package will reduce Medicaid spending by roughly $911 billion over the next 10 years and increase the number of uninsured Americans by up to 10 million.
Some of those who could lose coverage are among the 8 million — or 13 percent — of family caregivers in the United States who receive their health insurance coverage through Medicaid, according to the National Alliance of Caregiving.
“We are very concerned of the impact of the just finalized Medicaid cuts on the community of family caregivers,” Jason Resendez, president and CEO of the alliance, said during a call with reporters earlier this week.
Medicaid recipients will be subject to more frequent eligibility checks, in part, due to revised work requirements for the joint state and federal program. Now, adults between the ages of 19 and 64 will need to work or participate in community service activities for at least 80 hours a month to be eligible for health care coverage under Medicaid.
There are some exceptions for parents with dependents as well as for those deemed “medically frail” or who are pregnant or postpartum, according to the health care policy nonprofit KFF.
Many caregivers cannot work outside the home because of the intense care their family members need, or can only work limited hours, which can make fulfilling Medicaid work requirements difficult to impossible.
This was the case for Lisa Tschudi, host of caregiving podcast “Love Doesn’t Pay the Bills,” who stayed home full time to take care of her daughter who has ataxic cerebral palsy and epilepsy.
“We really did not have other options,” she said. “I, many times, tried to line up some non-me care for her during the workday and a job for myself, and I never really got my start in a paid job in that way.”
Her daughter’s epilepsy was poorly controlled for years as a child and teen, which required her to travel for frequent doctors’ appointments on top of taking care of her younger daughter.
“It was a lot to manage,” she said.
Work requirements might force some family caregivers to look for outside help, if that is an option, which represents a new expense and, potentially, a new challenge to navigate.
“Even if you can find outside providers to come in … families often find that they are not reliable,” said Elizabeth Edwards, senior attorney at the National Health Law Program.
“Some of that inconsistency of how people show up as providers can mean it’s very hard to hold a job.”
Family caregivers also already spend huge amounts of time navigating numerous bureaucratic hurdles, and new work requirements will add to the paperwork they have to fill out to prove they are eligible for health care under Medicaid.
This extra administrative work also increases the likelihood of errors occurring in the eligibility system, which could delay coverage or prevent some from being enrolled altogether, according to Edwards.
That is what happened to many Medicaid recipients in Arkansas and Georgia when the two states implemented work requirements in 2018 and 2023, respectively.
More than 18,000 people in Arkansas lost Medicaid coverage over the 10-month period the state rolled out work requirements without increasing employment, according to a KFF analysis. Georgia still has one of the highest uninsured rates in the country at 12 percent, according to the Commonwealth Fund.
“We anticipate [them] not just being faced with these eligibility issues, but family caregivers losing Medicaid coverage because of these additional hurdles that they’ll be forced to traverse,” Resendez said.
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Family caregivers worry over planned Medicaid cuts' impact
By Marina E. Franco, NBC News, July 31, 2025
For a decade, Alma Valencia has taken on the task of caring for her mother, Arminda, who suffers from dementia.
"I’ve had to take on that role of being a nurse — a person that does everything for my mom — dressing her, bathing her, feeding her. And it’s like having another child but that’s an adult, you know?" Valencia said. "It’s very, very tough, emotional, very, very draining."
Valencia is one of the approximately 63 million people in the U.S. — about a quarter of the entire U.S. population over the age of 18 — who have taken on the role of caring for a loved one who needs additional attention due to issues such as aging, disabilities or illness, according to a new report from AARP and the National Alliance for Caregiving.
Most of them do it without getting paid, and 6 in 10 are employed apart from the caregiving work they do at home. “It’s an invisible workforce that strengthens our families and our communities,” the report notes. In the Hispanic community, over one-third of all caregivers and almost half of caregivers are also in households where they’re taking care of children under 18.
Now there are worries among caregivers like Valencia over how Trump's "big, beautiful bill" that recently passed the Republican-led Congress will cut Medicaid funding and implement tougher Medicaid eligibility requirements. Some caregivers get financial help through programs funded by Medicaid, and some rely on Medicaid for their own medical care.
Among the programs at risk due to funding cuts to Medicaid is the Home and Community-Based Health Services (HCBS) program, which in some states offers a stipend to those who care for their loved ones at home to help cover things like medications or day care centers.
Valencia says this type of program is a much-needed relief, as she estimates her family already spends about $20,000 a year on out-of-pocket expenses for things like home improvements, such as installing ramps.
Half of caregivers have taken a financial hit, according to the report, and almost a quarter exhausted their short-term savings and are taking on debt, according to the report. Among Latinos like Valencia, almost a third (31%) reported being in debt and depleting their short-term savings. Latinos make up about 16% of caregivers in the U.S.
Now Valencia, who lives in California, worries the situation could become more severe. Even before any Medicaid cuts go into effect, Valencia said she's seen changes in what's accessible to her.
At the day care program where she takes her mom, "they were able to drop off Mom, pick her up. So they were able to support me with transportation. Now I’ve had to step in, and so that was removed. It’s little, little changes like that that I’m seeing," she said.
Approximately 8 million family caregivers rely on Medicaid for their own medical care, and 11 million receive HCBS-like stipends through the program, according to Jason Resendez, president and CEO of the National Alliance for Caregiving.
“It is very likely that those pathways will start to diminish because of tough choices that states will have to make in terms of what to fund with less federal Medicaid dollars,” Resendez said at an event presenting the AARP report. “Historically research has shown that when states have less money and are forced to make decisions Home and Community Benefits are the first optional benefits to get cut.”
The planned Medicaid cuts and changes include an increase in the number of minimum hours needed to work in order to receive benefits.
Resendez said this will affect caregivers, who often can only work part-time jobs so they can care for their loved ones and won't be able to work additional hours as may be required under new Medicaid rules.
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The Implementation Timeline of the One Big Beautiful Bill Act
By members of the staff of the Center for American Progress, July 29, 2025
On July 4, 2025, President Donald Trump signed congressional Republicans’ One Big Beautiful Bill Act (OBBBA) into law—enacting the largest-ever cuts to basic needs programs in U.S. history. The law’s provisions have dozens of staggered beginning and ending dates over the next decade.
[This article features] a timeline that details the enactment dates of cuts to health care and food assistance, the cancellation of policies to make American-made energy more affordable, the implementation of tax changes, and the enactment of policies that will raise the costs of higher education.
Click here to read the full article and view the timeline for implementing various measures and cuts to programs in the OBBBA
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Nebraska - Changes to Medicaid complicate process for those with disability waivers
By Arthur Jones and Macy Byars, Nebraska Publiic Media, July 31, 2025
The passage of the “Big Beautiful Bill” means Medicaid changes are coming.
Starting Jan. 1, 2027, Americans will have to log 80 hours a month of work-related activities like school, volunteering or employment to be eligible for Medicaid.
Proponents of the work requirement say it will help deter fraud and abuse. Others — particularly people with disabilities and those who work with them — say it's not that simple.
Those opposed to the change said that the work requirement adds another hurdle to a process that can already be confusing.
Alana Schriver, executive director of the Nebraska Association of Service Providers, works with organizations that provide services for people with developmental disabilities. She said Medicaid doesn't just cover doctor visits and prescriptions.
“Medicaid also pays for waiver programs, and so for example, our home- and community-based supports and services for individuals with intellectual and developmental disabilities are a Medicaid waiver program,” Schriver said.
Schriver is talking about the Home & Community Based Services (HCBS) waiver, which can help individuals with disabilities and their families access care that emphasizes community support and inclusion.
While people with disabilities do not have to meet the 80-hour-a-month work requirement, they will still need to contend with the new rules to access waiver services.
Applying for Medicaid waivers in Nebraska
To apply for waiver services, Nebraskans must first apply for general Medicaid. If they qualify and get enrolled, they can fill out an HCBS waiver. Two different divisions in the Nebraska Department of Health and Human Services are part of the process. General Medicaid is handled by the Medicaid and Long-Term Care division, and the Developmental Disabilities division reviews the HCBS waivers.
The two divisions aren’t directly linked during the application process. People with disabilities are usually eligible for Medicaid in Nebraska. However, if they’re over the income limit for Medicaid or ineligible for another reason — such as not meeting the new work requirement — they will be denied enrollment and access to waiver programs. If this is the case, they must contact the Developmental Disabilities division to clarify they are qualified for Medicaid through a disability.
Schriver said the process won’t always go smoothly.
“If you can't connect with the right person in time, and you do get kicked out of Medicaid, you are also kicked off your waiver for your home- and community-based services, and you have to reapply for that waiver service,” Schriver said.
Nebraska’s congressional delegation weighs in
Both of Nebraska’s senators, as well as all three representatives, voted in favor of the bill. District 1 Rep. Mike Flood said the bill strengthens Medicaid for low-income children, people with disabilities and pregnant women.
“Individuals in these categories, along with several others, are exempt from the community engagement requirements,” Flood said. “Rather, these requirements will incentivize more able-bodied Americans to participate in society and the American economy, while allowing them to continue to receive Medicaid benefits.”
In an opinion piece published by the Omaha World-Herald, Flood, along with Congressmen Don Bacon and Adrian Smith, said the bill aims to strengthen Medicaid’s long-term stability and integrity through the work requirements, referring to the work requirements instituted by President Bill Clinton in 1996’s Welfare to Work bill.
According to a recent report from the Congressional Budget Office, the new provisions would increase the number of people without health insurance in 2034 by 7.8 million compared to an unchanged Medicaid program.
Read the full article here
| | In Defense of the OBBB's Medicaid Cuts: | | |
In the past several months, there have been numerous articles about dire consequences for people with I/DD and autism that may result from the Medicaid cuts in what President Trump calls his "One Big Beautiful Bill".
We have printed very few articles supporting those cuts - not for lack of trying, but because such articles are few and far between, even among conservative media outlets.
This week, we came across two articles that put a positive spin on those cuts. We would like to present them here so our families can determine for themselves how these cuts may play out for their loved ones with I/DD and autism, and whether they view their loved ones' long-term services as "Welfare".
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This can be a ‘big, beautiful’ win for Americans with disabilities
By Robert Stack, The Hill, July 27, 2025
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The One Big, Beautiful Bill Act’s Medicaid reforms will not affect community-based programs for people with disabilities; instead, they address ineligible recipients, administrative fraud and able-bodied adults who choose not to work.
But more must be done to strengthen incentives for people with disabilities to move to, remain in, and thrive within their communities.
As an advocate who has fought for services to emancipate people with disabilities from institutional warehousing for nearly half a century, I can, without equivocation, write that large congregate care is less effective and significantly more expensive than any home- or community-based living arrangement. Funding can and should be allocated in a more humanitarian and utilitarian way when it comes to community programs.
When President Ronald Reagan signed the Omnibus Budget Reconciliation Act of 1981, the federal government recognized home- and community-based care as an alternative to costly institutions. Although the idea was to save money, the bill gave rise to the unexpected benefit of incentivizing states with innovative leadership to shift towards managing services rather than simply paying claims.
This sea-change enabled states such as New Jersey and New York to close institutions and move people back into their communities. In addition, these reforms caused a multitude of lawsuits against institutional abuse, which enabled a more expeditious shift for community placements and allowed the disabled to thrive in small homes.
I worked in New Jersey when it had several more institutions than it does now. In 1981, there were almost 9,000 people living in institutions. Today, there remain approximately 3,000 people living in the five remaining institutions and private nursing homes at a cost of nearly $450,000 per person per year in the state.
Over the last few years, I have visited state-run institutions in Corpus Christi, El Paso, and Dallas, which house thousands of people with disabilities who could work and live in their communities. Most of the funding in Texas is used to house people in institutions, which can cost nearly half a million dollars per person each year. In comparison, a person receiving community services, such as host homes, costs Medicaid only about $54,000 per year. Deinstitutionalization is slowing in Texas, and in recent years, the number of people who have moved from institutions into the community has declined significantly.
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Trump isn't gutting Medicaid and food stamps. He's fixing our broken welfare system. Opinion
President Donald Trump has preserved the core of the safety net for the truly vulnerable. He and his fellow Republicans are helping millions of able-bodied adults leave welfare and find work.
By Hayden Dubois, USA Today, July 28, 2025
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It’s a simple question with an obvious answer: Should Americans work as a condition of receiving welfare?
More than two-thirds of Americans respond with a resounding yes. But while the principle of the matter and popular opinion are clear, our country’s welfare system has been a muddled mess for decades.
The biggest welfare program − Medicaid − has been disconnected from helping its 84.6 million recipients find work. And while the food stamps program technically has work requirements, they’re inconsistently enforced for the 42 million people who benefit from the Supplemental Nutrition Assistance Program.
The result: Tens of millions of people, especially able-bodied adults, have been trapped in government dependency. But they deserve the chance to become self-sufficient. They deserve to fully share in our country’s progress. And they deserve to shape that progress while pursuing their own American dream.
Trump is fixing broken welfare system
That is why President Donald Trump’s One Big Beautiful Bill Act is so important. The president and Republicans in Congress have started to fundamentally fix America’s broken welfare system. They’re finally connecting welfare to work.
Unfortunately, many Americans haven’t heard this side of the story. They’ve been told − by virtually every politician on the left as well as a few loud voices on the right − that Trump and his fellow Republicans are gutting the safety net that vulnerable Americans need.
Nothing could be further from the truth.
In reality, the president has preserved the core of the safety net for the truly vulnerable. He and his fellow Republicans are helping millions of able-bodied adults leave welfare and find work.
That’s the point of the safety net: to support people who’ve fallen on hard times, then help them move on to better times. It was never meant to be a hammock. Yet that's what it has become, trapping millions of people in generational dependency.
Trump’s welfare reforms are righting this wrong.
To start, Medicaid now has its first federal work requirement in history. Able-bodied adults without children as well as those without young kids will now be required to work at least part time to keep receiving Medicaid.
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| | And Now, Back To this Week's News: | |
Proposed Medicaid Changes Could Lead to Thousands of Preventable Deaths and Billions in Economic Losses
By Brian Contreras, Managed Healthcare Executive, July 24, 2025
A new study published in JAMA Health Forum estimated that proposed Medicaid changes in the 2025 Budget Reconciliation Bill could lead to nearly 1,500 excess deaths and $135 billion in lost economic output annually by 2034.
Researchers used a microsimulation model to analyze the broader impacts of the bill, which includes stricter eligibility rules, work requirements and a reduced federal funding match for states. While the Congressional Budget Office (CBO) projects the changes would cut federal Medicaid spending by $698 billion and reduce enrollment by 10.3 million people, the study sheds light on major unintended consequences for beneficiaries, communities and the broader economy.
According to the analysis, the CBO’s forecasted coverage losses would result in 94,802 preventable hospitalizations each year, along with 1.6 million people delaying care due to cost and 1.9 million cases of medication nonadherence. The authors also predicted that 101 rural hospitals would face a high risk of closure, and federally qualified health centers would lose $3.3 billion in revenue—an 18.7% drop.
The ripple effects extend far beyond health care. By 2034, the study estimates the policy changes could lead to 302,000 job losses and an annual economic output reduction of $135.3 billion, along with an $11.1 billion drop in state and local tax revenue.
In a scenario where more people lose coverage—up to 14.4 million—the health and economic toll would be even higher. The toll would result in 2,284 excess deaths, 145,946 preventable hospitalizations, 408,000 lost jobs and nearly $183 billion in lost economic output each year.
Researchers expressed the findings indicate proposed Medicaid reforms would have “far-reaching consequences beyond federal budget savings” and warned that rural and underserved communities would be hit hardest.
This analysis arrived just weeks after President Trump signed the nearly 900-page “Big Beautiful Bill” into law on July 4. Passed by the Senate on July 1 and the House on July 3, the legislation enacts sweeping changes across Medicaid, the Affordable Care Act, Medicare and Health Savings Accounts.
Some areas it covers are work requirements for Medicaid eligibility—at least 80 hours per month for adults ages 19 to 64—and bars individuals who are denied Medicaid for not meeting those requirements from accessing subsidized ACA Marketplace coverage. It also grows the Immigration and Customs Enforcement (ICE) agency by thousands of workers.
In addition, the bill mandates that states exempt certain groups from the work requirement, including parents of dependent children and medically frail individuals, and requires eligibility verification for at least one month prior to application and during two yearly redeterminations.
States cannot waive these requirements under Section 1115 authority. Funding includes $100 million to states for system development and $50 million to HHS for implementation, with the changes set to take effect by December 31, 2026, or earlier at state discretion.
The authors of the JAMA Health study stressed that Medicaid is not just a line item in the federal budget—it is tightly woven into the healthcare and economic fabric of the country. Safety-net providers, particularly in rural areas, rely heavily on Medicaid reimbursement to stay open. When coverage is lost, folks will often delay care, face increased medical debt or end up hospitalized for preventable conditions.
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Trump’s Medicaid Cuts Put the ADA, and Americans with Disabilities, at Risk
By Barbara Merrill and Tony Coelho, TIME, July 26, 2025
Today marks the 35th anniversary of the Americans with Disabilities Act (ADA). This landmark legislation, which enshrined in federal statute civil rights for people living with disabilities, has transformed countless lives. It opened the world up to an entire population who, until that point, were more often than not excluded and isolated from society.
Yet, as we celebrate the ADA's enduring legacy this year, the future for people with disabilities looks less certain. The ADA’s vision is not self-sustaining. Its promise is fulfilled through an ecosystem of vital support services, many of which rely on Medicaid funding. For millions of Americans living with disabilities, Medicaid is a lifeline that provides access to essential home- and community-based services (HCBS). These services include the most basic activities of daily living like bathing, dressing, eating, and more, as well as the residential programs, employment supports, and assistive technologies that allow people with I/DD to live with dignity in their own homes and communities. These services are at the heart of the ADA and crucial to making inclusion a reality.
Following the passage of President Donald Trump’s tax bill, which will cut aproximately $1 trillion from Medicaid over the next several years, these support systems are in jeopardy. This attack on Medicaid threatens to unravel decades of progress toward equal opportunity for individuals with disabilities, as access to these services will undoubtedly become more limited.
Cuts to Medicaid could mean fewer available care services, longer waiting lists for critical support, and potentially the loss of the very assistance that allows those with I/DD to live independent and fulfilling lives. Imagine losing the career coach who helps you get ready for work and makes it possible to maintain steady employment, or the direct support professional (DSP) who helps you bathe and brush your teeth, or the transportation service that connects you to your community. These cuts translate into a forced retreat from independence, pushing individuals back into isolation and dependency, often in hospitals or costly, state-run institutions, directly contradicting the ADA's core tenets.
The ripple effect extends to the dedicated community providers who are the backbone of the HCBS ecosystem. These organizations operate on thin margins, relying heavily, or solely, on Medicaid to fund their services. Cuts of this size may fall heavily on providers, who are already in crisis because of long-term underinvestment in community-based services, leaving them struggling to offer their DSPs competitive wages and benefits due to stagnant and insufficient reimbursement rates. Ultimately, these cuts could lead to reduced capacity, staff layoffs, and even the closure of programs.
The national shortage of DSPs is also expected to worsen. To pay wages, providers rely on Medicaid reimbursements from their states; if states are rendered unable to increase reimbursement rates, providers will lose the DSPs they employ to better-paying opportunities in other hourly wage industries such as fast food and retail. This monumental blow to Medicaid funding will make it even harder to find and retain the individuals who provide day-to-day care. Troublingly, these DSPs, whose work is both physically and emotionally demanding, often rely on Medicaid themselves due to insufficient wages.
When providers are forced to scale back programs or shutter entirely, the entire HCBS infrastructure weakens, leaving countless individuals without the support they need. The strain is then placed on the families of people with I/DD, potentially forcing some to leave their own jobs to provide care for their loved ones. For the many individuals with I/DD who don’t have family or existing networks of support, access to care may be lost completely.
The true scale of the impact remains to be seen, but there is no doubt that it will be nothing short of devastating.
Read the full article here
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Senate panel rejects Trump cuts to NIH, other health agencies
By Nathaniel Weixel, The Hill, July 31, 2025
The Senate Appropriations Committee rejected the Trump administration’s massive proposed funding cut to the National Institutes of Health (NIH), advancing a measure that would increase the agency’s budget by $400 million.
The White House budget called for slashing NIH funding by $18 billion, a decrease of 40 percent. Instead, the committee advanced the bill on a 26-3 vote, delivering a bipartisan rebuke of the administration’s efforts to defund medical research.
“This committee has had multiple hearings over the last several months and heard from patients, families and researchers about the importance of NIH funding,” Sen. Tammy Baldwin (D-Wis.) said. “This committee has, in a bipartisan manner, prioritized NIH and the research it supports to develop life-saving treatments and cures for devastating diseases.”
The committee rejected the administration’s plan to revamp the way the NIH pays universities, medical schools and other research centers for overhead costs, as well as a proposal to restructure the agency and consolidate all 27 NIH institutes into eight new entities.
The bill includes a $100 million increase for Alzheimer’s disease research, a $150 million increase for cancer research, and a $30 million increase for the Office of Research on Women’s Health.
“To the scientists wondering if there will even be an NIH by the end of this administration: this committee’s resounding message is yes,” said Sen. Patty Murray (D-Wash.), the committee’s vice chair.
“Congress has your back — we’re not going to give up the fight against cancer, Alzheimer’s, or rare diseases,” Murray said.
Democratic committee members also expressed frustration at the White House Office of Management and Budget’s (OMB) repeated encroachments into the appropriations process and attempts to halt spending of money that was already approved by Congress.
Since President Trump took office, the NIH has terminated or frozen nearly 5,000 awards totaling $4 billion, while another approximately $15 billion has not yet been obligated.
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For Decades, the Feds Were the Last, Best Hope for Special Ed Kids. What Happens Now?
By Lauren Wagner and Beth Hawkins, The 74 Million, July 31, 2025
Last December, after a year and a half of blind alleys, impenetrable paperwork and bureaucratic stonewalling, it seemed like the complaints Sierra Rios had filed against her fifth-grader’s elementary school were finally getting a proper investigation. A lawyer in the Dallas office of the U.S. Department of Education’s Office for Civil Rights was asking hard questions of the school where Rios said her daughter, Nevaeh, was repeatedly denied special education services.
But then, a few weeks into the probe, the San Antonio mother got a bounce-back email informing her that the attorney working on her case was no longer employed by the agency. As part of its plan to shutter the department, the Trump administration had fired 40% of the civil rights division’s staff and closed half of its regional offices.
The March email did not say what would happen to Rios’ case. In May, she got a message asking for a form that had somehow not been transferred from Texas to the agency’s office in Kansas City, Missouri. Rios re-sent the document, but it no longer mattered. During the churn, she was told, the complaint had become too old to pursue.
The saga is a vivid illustration of the fate that policy experts predict awaits families of students with disabilities. For decades, the federal government has been a key avenue of relief for parents unable to get services for their children through complaints filed with their state, mediation, administrative hearings or due process cases. Now, with the department lurching toward closure, state-level officials may increasingly have the final word. And a 74 analysis shows that those systems, intended to help desperate parents like Rios, have never delivered on their promise.
A ‘parent-friendly’ process that’s anything but simple
Fifty years ago, under the Individuals with Disabilities in Education Act, Congress created three ways parents could appeal to their state education departments if they felt their children were being denied accommodations in school. These mechanisms vary in complexity and effectiveness, but all were supposed to be simple enough for any parent to navigate.
Families, or school administrators seeking help in resolving a disagreement, can file a complaint with their state in hopes that education officials will intervene if they find a district’s efforts lacking or improper. Parents can also ask the state to appoint a mediator who will try to bring both sides to an agreement. Most complicated, but potentially most effective, families can file a due process complaint, which kicks off a legal process that usually requires an attorney or skilled advocate. The complaint may start with a mediator but can progress to a formal hearing before an administrative law judge. If the dispute isn’t resolved there, the case can turn into a federal lawsuit.
Some states pursue complaints quickly, with an eye toward resolving issues before they become intensely adversarial and expensive. Others lag or throw up procedural roadblocks, presumably trying to reduce the number of cases filed.
Complaints can run aground at a dizzying array of junctures. The length of time a family has to file after the event they’re disputing differs depending on where they live and which mechanism they’re trying to use. If an email or letter doesn’t get a reply within a certain number of days, the case can be closed. Things must be done in a precise order, spelled out in legalese.
In Rios’ case, she initially tried to open a state complaint against the principal of Nevaeh’s school in 2023. The Texas Education Agency rejected her request in a letter that she read as saying complaints cannot be filed against individuals, just schools and districts. (The agency says complaints can be filed against individuals.)
Rios assumed her complaint was dead in the water. A year later, with Nevaeh’s situation deteriorating as school staff, Rios says, grew tired of the family’s continued complaints, she did more research and opened a case at the Office for Civil Rights under the Americans with Disabilities Act.
The law that created the state complaint processes, the IDEA, guarantees disabled students’ educational rights. By contrast, the ADA, passed in 1990, outlaws discrimination against people who need accommodations to access public facilities and programs — including schools.
Families of children denied special education services can assert their rights under either law. When states fail to enforce a student’s educational rights under IDEA, families often file a discrimination complaint via the ADA.
In the 2022-23 school year, more than 54,000 state dispute resolution requests were filed in the U.S. and its territories, including due process complaints, written state complaints and mediation requests. The Office for Civil Rights had about 12,000 open cases — half of them involving disability discrimination — when its staff was slashed in March. For fiscal year 2026, which started July 1, the White House’s proposed OCR budget is $91 million, a 35% drop.
At the same time, the administration wants to move $33 million that currently funds state advocacy clearinghouses into block grants that states — cash-strapped as their federal pandemic funds run out — can use for other things. This means families risk losing a second source of leverage: free assistance from experts.
If enacted, both budget cuts would also exacerbate socioeconomic and racial disparities in the services kids with disabilities receive, says Carrie Gillispie, a senior policy analyst at New America. This is because families in states where there’s little appetite for local enforcement depend on OCR to investigate discrimination.
“Those discrepancies that exist will only worsen if these budget changes happen,” Gillispie says. “It’s a choice to continue to underinvest.”
With the federal office a hollow shell of what it was six months ago, advocates say, families are likely to rely more heavily on their states. And how — and how well — each state helps students with disabilities varies widely.
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The New Mental Illness Policy -
Forced Institutionalization:
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Executive Order to Combat Street Homelessness Calls for Expanding Involuntary Treatment and Institutionalization
From the Staff Members at Manatt, July 20, 2025
Overview
On July 24, President Trump issued an executive order (EO), Ending Crime and Disorder on America’s Streets, and accompanying fact sheet directing federal agencies to support broad enforcement actions against homelessness, with a focus on institutionalizing individuals experiencing homelessness who have mental illness or substance use disorders (SUDs). This EO comes as homelessness has reached record levels across the nation with over 770,000 people experiencing homelessness in 2024—a reported 18 percent increase from the previous year. The EO marks a departure from longstanding, bipartisan support for “housing first” policies, instead prioritizing funding for programs that condition housing on sobriety and behavioral health treatment participation. The EO also seeks to incentivize jurisdictions to enact and enforce bans on public camping, drug use, loitering, and squatting.
The EO establishes as U.S. policy that individuals who are “a risk to themselves or others” or “cannot care for themselves” may be removed from public spaces and placed in treatment centers or long-term institutional settings, including through involuntary civil commitment. It charges Attorney General Pam Bondi with seeking to reverse judicial precedents and terminate consent decrees that place limits on involuntary institutionalization based on civil rights. It contains multiple provisions related to commitment and tracking of sex offenders.
The EO directs the Departments of Health and Human Services (HHS), Housing and Urban Development (HUD), and other federal agencies to disincentivize or redirect funding away from states and jurisdictions that promote harm reduction programs, offer housing regardless of whether an individual seeks treatment for identified behavioral health conditions (i.e., housing first programs), and that do not criminalize public camping and unsheltered homelessness.
The EO stakes out the Trump Administration’s position on some of the most controversial and complex domestic issues of the day, departing dramatically from established approaches to addressing homelessness, minimizing long-term institutionalization of individuals, and preventing death and disease through harm reduction strategies. As such, it already has generated significant controversy among national organizations such as the National Alliance on Mental Illness and the American Society of Addiction Medicine which have critiqued it for failing to follow evidence-based practices and for further stigmatizing people with mental illness and SUDs.
The EO is not self-executing and does not require states, localities, or other organizations to take action unless and until federal agencies issue guidance or amend grant programs to effectuate the directives in the EO.
Rejecting Housing First and Harm Reduction Approaches
The EO directs the Attorney General to review housing grants, determine whether recipients are in violation of federal law, and bring civil or criminal actions against grant recipients who allow “safe consumption” or permit the use or distribution of “illicit drugs on property under their control.” Though it does not explicitly ban housing first or harm reduction programs, the EO discourages these programs by diverting federal funding away from them and subjecting them to heightened scrutiny. The EO does not specifically state which grants or programs could be at risk, nor does it provide alternatives to addressing homelessness or behavioral health needs beyond institutionalization.
Re-institutionalization and Olmstead
The EO implicitly challenges the core tenets of the landmark 1999 Olmstead decision which aims to ensure that those who can be served in community-based services are able to since institutional placement can lead to isolation and “severely diminishes the everyday life activities of individuals” in violation of the Americans with Disabilities Act (ADA). It directs HHS to support placing people experiencing homelessness into long-term care institutional settings, including providing assistance to states and local governments who adopt and implement “maximally flexible civil commitment, institutional treatment.” The EO also explicitly directs the Attorney General to terminate consent decrees despite decades of impactful court cases and state and federal policy that enforce the Olmstead decision.
Looking Ahead
Through the EO, the Trump Administration stakes out new U.S. policy to address the growing homelessness crisis by redirecting federal funds from programs consistent with decades of evidence-based policies to costly, involuntary commitment. By restricting federal funds and incentivizing states and local governments to support involuntary commitments, the Administration is rejecting decades of research and legal precedent establishing the right to receive community-based services for those who are able. For now, nearly all of the EO’s provisions require further action by federal agencies to achieve effect. States, local governments, and other entities operating federally funded housing programs may not be compelled to take any concrete steps to modify or end programs until federal agencies take action to implement the EO by, for example, issuing guidance or amending grant agreements. When federal agencies act on the EO’s directives, availability of community-based services will decrease, even as the rates of homelessness and behavioral health disorders increase.
Read the full article here
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Trump Order Sparks Concerns About Forced Institutionalization
By Michelle Diament, Disability Scoop, August 1, 2025
A White House order calling for greater reliance on institutionalization threatens decades of precedent on disability rights, advocates are warning.
The executive order issued late last month by President Donald Trump is aimed at addressing homelessness, but could have implications for people with disabilities more broadly, according to multiple disability advocacy groups.
“This executive order appears aimed at upending decades of established Supreme Court precedent and eliminating basic protections that prevent the arbitrary confinement of people based on a disability,” said Jennifer Mathis, deputy director of the Bazelon Center for Mental Health Law.
With the action, Trump is directing the attorney general to seek “the reversal of federal or state judicial precedents and the termination of consent decrees that impede the United States’ policy of encouraging civil commitment of individuals with mental illness who pose risks to themselves or the public or are living on the streets and cannot care for themselves in appropriate facilities for appropriate periods of time.”
Trump’s order states that “shifting homeless individuals into long-term institutional settings for humane treatment through the appropriate use of civil commitment will restore public order.”
Historically, people with disabilities were often confined to psychiatric hospitals with little to no reason. But in a 1975 case brought by Kenneth Donaldson, who was held in a Florida state hospital for 15 years, the Supreme Court ruled that “the mere presence of mental illness does not disqualify a person from preferring his home to the comforts of an institution” and that “a state cannot constitutionally confine, without more, a nondangerous individual who is capable of surviving safely in freedom by himself or with the help of willing and responsible family members or friends.”
Advocates noted that the Supreme Court has repeatedly upheld these principles.
“We cannot go back to the times when people’s liberty could be taken away with no rhyme or reason, or for reasons like revenge or punishment,” Mathis said. “The executive branch has an obligation to abide by Supreme Court decisions rather than seeking to overturn them.”
As many as 40% of people with developmental disabilities have co-occurring mental health conditions and many lack the specialized services they need, advocates say.
Meanwhile, about 30% to 40% of those who are homeless have cognitive impairment, including autism or intellectual disability, and many wind up unhoused later in life after the death of a family caregiver, according to Michelle Uzeta, interim executive director at the Disability Rights Education & Defense Fund.
“This is a return to ‘ugly laws’ — and paves the way for the institutionalization and shuttering away of anyone this administration feels to be undesirable,” Uzeta said. “This is absolutely a slippery slope, and the product of an agenda infused with eugenic thinking.”
The new executive order says that federal officials should help state and local governments through technical guidance, grants and other means adopt and implement “maximally flexible civil commitment” standards.
It comes just weeks after Congress approved nearly $1 trillion in cuts to Medicaid, which is already fueling concerns that access to home and community-based services could shrink in the coming years. Sending more people to costly institutional settings, would put greater pressure on the system, advocates say.
Read the full article here
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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.
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