May 2, 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.

It's not too late to join!

May 12-14, 2025

VOR's Annual Legislative Initiative

Washington, D.C.

We will meet in D.C. on May 12th - 14th

for meetings with

Congressional Staff and Federal Agencies

to discuss issues of critical importance to

individuals with severe or profound I/DD and autism

and their families.

This year's topics are expected to include:



Preventing Cuts to Medicaid

and

Rebuilding and Supporting our DSP Workforce

This event is open to all members of VOR

To register for the Legislative Initiative,

Please Click Here

Unable to join us in D.C. this year?

You can still help by becoming a sponsor!

This is a critical time for our families.

The actions taken by Congress and the Administration

in the next few months could impact the lives of

hundreds of thousands of people with I/DD and autism in the years to come.

Please help us help.

Diamond - $ 5,000

Platinum - $ 2,500

Gold - $1,000

Silver - $ 500

Bronze - $ 250

Advocacy Hero - $ 100

Friends & Families - (Other amounts)

Any and all gifts are welcome

Which means we will be just in time for:

GOP leaders take more time for key megabill markup after Medicaid snags

By Meredith Lee Hill, Politico, May 1, 2025

House GOP leaders are pushing Energy and Commerce Committee’s megabill markup another week as Republicans try to resolve lingering issues over spending cuts to Medicaid.

The panel will now likely hold it’s markup the week on May 12, according to four Republicans with direct knowledge of the matter. And, the committee will hold a series of member meetings next Tuesday and Wednesday.

One of the key issues remaining is how far Republicans go to implement a controversial proposal to cap federal Medicaid payments to states, as leaders try to work through various estimates about savings, according to two other people with direct knowledge.

Speaker Mike Johnson, Energy and Commerce Chair Brett Guthrie and other members of the House GOP leadership team ran through Medicaid proposals and other major pieces of the GOP’s party-line domestic policy package with President Donald Trump during a White House meeting Thursday. The White House also presented Johnson’s team a list of items they want in the bill.

Continued

President Trump Releases FY 2026 Discretionary Budget Request

Earlier today President Trump submitted his "skinny budget" to Congress, and we have a few key takeaways below. In addition, here are several White House "fact sheets". Each President typically submits an annual budget to Congress that is considered aspirational more than a realistic starting point. As Congress begins its own appropriations' process in the coming months, we will see more clearly where this Congress' priorities overlap and diverge with President Trump.

• NIH: budget cuts of $17.97 billion
• CDC: budget cuts of $3.59 billion
• HRSA: budget cuts of $1.732 billion
• SAMHSA: budget cuts of $1.07 billion
• CMS: budget cuts of $674 million

Download the Skinny Budget here

View the "Fact Sheets" here

BREAKING NEWS: Related article just released:

White House Releases 'Skinny' FY26 Budget Proposal With $33 Billion in HHS Cuts

By Joyce Frieden, MedPage Today, May 2, 2025

Health groups and members of Congress mostly panned a fiscal year 2026 "skinny" budget proposal released Friday by the Trump administration that cuts millions of dollars from HHS programs and other agencies.

"If enacted, the preview of the president's budget request released today would yield to cancer, Alzheimer's, diabetes, and other health threats facing Americans by dismantling federal support for medical research, public health, and health professions' education that keeps the country healthy,"

Danielle Turnipseed, JD, MPP, chief public policy officer of the Association of American Medical Colleges, said in a statement. "Retreating on health issues where we have made progress and where so many depend on their government to offer promising cures is not the American way."

"This budget is Donald Trump's latest blueprint to rip away the services that millions of Americans rely on, leaving families less safe and less healthy," Sen. Ron Wyden (D-Ore.), ranking member of the Senate Finance Committee, said in a statement. "The only winners here will be corporations wanting to pollute your clean air and drinking water and rich tax cheats. One hundred days in, the Trump administration is doubling down on its agenda to help corporations and billionaires get wealthier while everyone else gets left behind."

Read the article here

Trump DOJ Decimates The Civil Rights Division And All It Stood For

By David Kurtz, Talking Points Morning Memo, April 29, 2025

The Department of Justice’s Civil Rights Division has for nearly seven decades been at the forefront of some of the department’s most historically significant work. As a backstop to disenfranchised Americans in the South and minorities nationwide, the Civil Right Division has long been at the vanguard of protecting the rights of “the most vulnerable members of our society,” as it still says on its website.

Reporting in recent days had indicated that a purge of top lawyers in the division was underway, and now there is a full-scale exodus from the division as Assistant Attorney General for Civil Rights Harmeet Dhillon wrenches it from its traditional functions mandated by Congress toward propping up the policies of President Trump:

Since being sworn in this month, civil rights director Harmeet K. Dhillon has redirected her staff to focus on combating antisemitism, the participation of transgender athletes in women’s sports and what Trump and his allies have described as anti-Christian bias and the Democrats’ “woke ideology.”

Approximately half of the divisions approximately 380 attorneys have either left or are planning to leave, the NYT reports.

Dhillon elaborated on her new mission in an appearance over the weekend on Glenn Beck’s podcast, a choice of venue that as former U.S. Attorney Joyce Vance noted, “is enough to raise the hairs on the back of the neck of anyone who understands the Justice Department’s non-political mission.”

Jon Greenbaum, a former Civil Rights Division attorney 20 years ago, recounted some of what he’s heard from inside the department and concludes: “This is what we are faced with for the next three and three-quarter years in the Civil Rights Division and the executive branch as a whole: federal agencies that follow the dictates of one person and his friends while largely ignoring their Congressionally mandated responsibilities.”

Read the full article here

Note: Several of the participants in VOR's 2025 Legislative Initiative are scheduled to meet with Members of the DOJ Office of Civil Rights next week.

Disability Protection Groups in Two States Pause Services After Missing Federal Funds

By Julia Metraux, Mother Jones, April 26, 2025

State organizations that advocate for disabled residents in New Jersey and Arkansas announced this week that they will have to limit their work due to not receiving the full federal funds they are owed by the US federal government.

Each state, territory, and Washington, DC, has a protection and advocacy agency to support the rights of disabled people, including providing one-on-one legal services. These agencies were created by the Developmental Disabilities Assistance and Bill of Rights Act of 1975, which means their work is federally mandated. It’s currently unclear whether all protection and advocacy agencies have been impacted by shortages in federal funds.

NJ.com reported that Disability Rights New Jersey (DRNJ) has received only $1.6 million of the $3.1 million it needs this year to represent disabled people, including those in group homes and in prisons. As a result, the agency—which also receives some state funding—is shutting down its services until May 5, and says it will not be able to make payroll next month if it does not receive its designated federal funds. The White House did not respond to NJ.com‘s request for comment on funding issues.

“We are fighting for our very survival,” DRNJ executive director Gwen Orlowski told NJ.com, noting that some DRNJ attorneys left last year with anticipation of chaos during the second Trump administration. “We’re at a crossroads as an American society.”

In a Facebook post, Disability Rights Arkansas (DRA) announced that it won’t be accepting new cases as of Friday, with exceptions for a few types of cases, due to not receiving all its federal funds.

“This pause allows us to continue to support the clients we have in case funding is not released at all,” the post reads. “In the meantime, DRA will be providing information, referral, and technical assistance only.” The post encourages people who need help to contact their Arkansas state representatives and members of Congress.

This isn’t the first time the Trump administration has attacked protection and advocacy agencies. First, Health and Human Services Secretary Robert F. Kennedy announced in late March that he was closing the Administration for Community Living, which has overseen P&As for over a decade. Then, leaked HHS report draft revealed that the department plans to strip funding for protection and advocacy agencies. 

Continued

Most of the Public Oppose Major Federal Cuts to Health Agencies and Programs and Say They Have Been Made “Recklessly”

KFF News Alert, May 2, 2025

As the Trump administration and Congress pursue broad cuts to federal health agencies and budgets, most of the public, including some Republicans, oppose deep budget and staffing cuts to federal health programs and agencies, a new KFF Health Tracking Poll finds.

Across a range of questions, large majorities of Democrats and independents oppose the Trump administration’s major cuts to federal health agencies and programs, while Republicans are more supportive. Those who identify with President Trump’s Make America Great Again movement are even more supportive of cuts to health agency’s staff and budget but still split on cuts to funding for Medicaid and a few other programs.

Article below

KFF Health Tracking Poll April 2025: Public’s View on Major Cuts to Federal Health Agencies

By Grace Sparks, Alex Montero, Marley Presiado, Julian Montalvo III, Ashley Kirzinger, and Liz Hamel KFF, May 1, 2023

Key Takeaways

• Amid sweeping overhauls of federal health agencies in the first 100 days of President Trump’s second term, majorities of the public oppose major cuts to staff and spending at these agencies (61%) and say recent actions by the administration and Elon Musk’s Department of Government Efficiency (DOGE) have gone too far (54%). In addition, six in ten (59%) say the administration is “recklessly making broad cuts to programs and staff, including some that are necessary for agencies to function,” while a smaller share (41%) say “the administration is carefully making cuts to programs and staff to reduce fraud and waste, and to improve government efficiency.”

• Views of cuts to staff and spending are largely partisan with most Democrats and independents opposing the cuts and thinking they go “too far,” while a majority of Republicans support the cuts and six in ten (63%) say the extent has been “about right.” In addition, nine in ten Democrats and two-thirds of independents categorize the cuts as reckless while eight in ten Republicans think the administration is carefully making the cuts. Across the board, the strongest proponents of these cuts are MAGA supporters, a group that constitutes about three-quarters of all Republicans and Republican-leaning independents. Large majorities of MAGA supporters say they support the cuts and a quarter say the cuts haven’t gone far enough. Much smaller shares of Republicans and Republican-leaning independents whose views don’t align with the MAGA movement approve of the current actions by the Trump administration.

• Most of the public also see the negative consequences from these cuts, with majorities saying cuts to staff and spending at federal health agencies will have a negative impact on health care for veterans, research to find cures and treatments for cancer and other diseases, efforts to combat the spread of infectious diseases, and food safety. Once again, views are partisan with most Democrats and independents saying the cuts will have a negative impact in these areas while Republicans are more likely to say the cuts won’t have an impact.

(more)

Most Oppose Trump Administration Cuts to Federal Health Agencies

The first few months of President Donald Trump’s second term have been punctuated by a wave of cuts to the federal workforce and government funded programs, especially in health care agencies. At least 20,000 jobs have been lost from the Department of Health and Human Services and its sub-agencies since Robert F. Kennedy Jr. assumed his job as secretary of the agency.

Most of the public (61%) oppose major cuts to staff and spending at federal health agencies, while two in five (38%) support such cuts. Views on the cuts to staff and spending are expectedly partisan, with the majority of Republicans supporting major cuts (72% support, 27% oppose), while nine in ten Democrats oppose the cuts (89% oppose, 10% support). Two-thirds of independents oppose the cuts (67%) while a third are in support (32%).

Support for major changes at federal government health agencies is driven by the most enthusiastic segment of President Trump’s political base – Republicans and Republican-leaning independents who identify as supporters of the Make America Great Again (MAGA) movement. This group, which makes up 75% of Republicans and leaners (31% of total U.S. adults) are demographically similar to other Republicans and Republican-leaning independents when it comes to race/ethnicity, gender, and income, but tend to be older. Roughly eight in ten MAGA-aligned Republicans say they generally support major cuts to staff and spending at federal health agencies, while non-MAGA Republicans are more divided (48% support and 52% oppose).

Read the full article here

(Note: The following article contains several talking points we have been sharing with State Governors and Members of Congress)

Opinion: Even if you don’t depend on Medicaid, you’ll likely be hurt if Republicans cut it

By Wesley Epplin and Julie Justicz, MSNBC, April 29, 2025

In what would be a brutal, not “beautiful,” budget bill, Republicans in Washington are plotting to make massive cuts to Medicaid coverage through budget reconciliation.

Covering almost 72 million Americans, Medicaid, America’s largest health insurance program, is so integral to health care finance and delivery that the GOP’s threatened cuts would prompt a deadly domino effect, leading to inferior, more expensive health care — and, therefore, worse health — for virtually all Americans, including those with insurance provided by their employers. The impact wouldn’t just be felt by individuals, but it would also be felt by state governments and by hospitals and health workers.

House Republicans, who insist they don’t intend to cut Medicaid, have offered proposals that would do just that, such as per-capita caps, block grants, reducing the federal match for the ACA Medicaid expansion, slashing provider taxes, and work requirements as possibilities. While the details matter, let’s not get lost in the weeds. No matter how they style it, all the above count as Medicaid cuts, and all the above would be costly and deadly.

For example, depending on what Republicans choose to do, one example of a domino falling would likely be hundreds of thousands of people, if not millions of people, losing coverage with no backup insurance option. Others could face significantly higher premiums and copays, putting health care out of reach. Pills would be split, prescriptions would go unfilled and more workdays would be lost to sicknesses. Medical debt, a uniquely American problem, would increase. Tens of millions of families would struggle more than they already do to afford food, housing and health care.

Domino two: Even those who would still have Medicaid coverage could experience worsened health — because of reduced access to needed preventive care, primary care, prenatal care, diagnostics, dental care and behavioral health care. Medicaid cuts could disrupt access to tests and care for pregnancy and for conditions such as diabetes, asthma, heart disease, HIV and cancer. Further, such cuts could cause older adults and people with disabilities to have less access to long-term care, services and supports, which, in turn, could cost them their ability to live in their own homes or work.

Domino three: According to KFF, House Republicans’ proposed Medicaid cuts would leave state governments with budget holes of hundreds of millions, and in many cases, billions of dollars. These budget gaps would prompt tax increases or massive cuts to health and social services, education and infrastructure, resources we all depend on.

Domino four: Republicans’ proposed Medicaid cuts would make it harder, even for people with private insurance, to access care at hospitals and clinics. Because people who lose Medicaid coverage would use emergency rooms more frequently, it would make those emergency rooms more crowded. Rising uncompensated care costs at hospitals and clinics would devastate safety net and rural health centers. Plummeting Medicaid reimbursements would cause hospitals to pass along higher charges to patients and private insurers. The insurers, in turn, would increase premiums for those with employer-based coverage.

Read the full article here

Trump Administration Shuts Out Advocates, Researchers In Probe Targeting Autism

By Michelle Diament, Disability Scoop, May 1, 2025

As the Trump administration lays out ambitious plans to address autism, many longtime leaders and well-known experts in the field have been left out, stakeholders indicate.

National autism advocacy groups and top researchers tell Disability Scoop that they have not had any contact with the U.S. Department of Health and Human Services.

Meanwhile, the Interagency Autism Coordinating Committee — a panel comprised of government officials and members of the autism community tasked with coordinating federal autism efforts — has not met since January.

This comes as federal health officials have fired off one announcement after the next since President Donald Trump took office about their plans to aggressively target autism amid increasing prevalence estimates.

In April, Secretary of Health and Human Services Robert F. Kennedy Jr. told Trump that his agency had “launched a massive testing and research effort” that would “involve hundreds of scientists from around the world” and that “by September we will know what has caused the autism epidemic and we’ll be able to eliminate those exposures.” Kennedy later softened that pledge, saying “we expect to begin to have answers by September,” adding that his agency would be initiating studies to identify environmental toxins responsible for the developmental disability.

More recently, the director of the National Institutes of Health detailed plans to amass private medical records from federal and commercial sources potentially including pharmacies, insurers and even smartwatches and fitness trackers to study autism. The plan drew backlash prompting HHS to clarify that they were developing a “secure data repository that will enable researchers to analyze large-scale, de-identified data,” not “creating an autism registry to track individuals using personal data.”

The bold plans, which have largely been short on details, have taken both advocates and autism researchers by surprise.

Since 2006, the federal government has authorized more than $5 billion in research funding through what’s now known as the Autism CARES Act, according to Dr. Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University, who’s leading the Coalition of Autism Scientists, a newly established group of more than 150 researchers in the field.

“That none of the scientists who have received this funding has been contacted in recent weeks is alarming and does not bode well for the plans that seem to be underway,” said Tager-Flusberg who indicated that she’s heard directly and indirectly from over 400 colleagues. “In the past, research plans to rapidly expand support for autism came after extensive consultation with parent and advocacy organizations and the scientific community. No such process has been undertaken this year.”

Similarly, groups ranging from Autism Speaks to the Autistic Self Advocacy Network say that they have not heard from federal health officials.

The lack of communication has led to questions about how studies will be conducted and how data will be used and protected, advocates said. It has also prompted concerns that people may shy away from seeking an autism diagnosis or services.

“Despite continued efforts both individually, and alongside our peers, we have not been able to directly connect with this administration. The current lack of transparency, conflicting statements and limited publicly available information have made it difficult to engage meaningfully leaving us, and many others, learning details in real time,” said Kristyn Roth, chief marketing officer at the Autism Society of America. “As a result, we’ve seen a sharp increase in outreach to our national helpline, and our network of affiliates across the country is experiencing similar concerns. Autistic individuals, caregivers and providers are seeking clarity around their rights and how to safeguard their personal data.”

One exception is the National Council on Severe Autism. Representatives from the group were unexpectedly part of a small meet-and-greet with Kennedy tied to World Autism Awareness Day last month.

“We thought we had a small meeting (with) staff to discuss Medicaid for severe autism, but it somehow morphed into (the meet-and-greet),” said Jill Escher, the group’s president, who indicated that she didn’t know most of the other attendees.

Kennedy has emphasized the challenges faced by people on the more severe end of the spectrum in speaking out about what what he calls the “autism epidemic.”

“These are kids who will never pay taxes. They will never hold a job. They’ll never play baseball. They’ll never write a poem. They’ll never go out on a date,” Kennedy said at a press conference last month, adding that autism “destroys families.”

The characterization prompted a rebuke from several leading autism organizations, some of whom do not always align with each other.

National autism advocacy groups including Autism Speaks, the Autism Society of America, the Autistic Self Advocacy Network and the Autism Science Foundation have all asserted that vaccines do not cause autism.

Escher from the National Council on Severe Autism said she used her brief opportunity with Kennedy at the meet-and-greet to thank him for “his concern about rising autism prevalence and the need to find answers.”

“I also gently pushed back on the vaccine hypothesis and encouraged an approach that stuck closer to biological plausibility,” she said.

HHS officials did not respond to repeated requests for information about the status of the Interagency Autism Coordinating Committee and whether the agency is conferring with outside groups or if there will be any opportunity for public input on its autism initiatives.

Read the full article here

New England - Experts warn of long-term harm as Trump kneecaps health research

By Jason Laughlin, Neena Hagen, Kay Lazar and Liz Kowalczyk, The Boston Globe, April 30, 2025

In the short space of a few months, President Trump has undercut seven decades of federal support for scientific research, transforming a pillar of academia and industry in New England, perhaps permanently.

From the start, Trump sought to excise diversity and gender issues from the federal government by taking a sledgehammer to billions in government funding. But at the close of his first 100 days in office, it’s clear his approach is having consequences far beyond his ideological targets, kneecapping swaths of health-related work with only tenuous connections to diversity or gender.

Among the casualties in New England are research into cancer prevention, substance use treatment, and countering misinformation. Public health programs related to vaccinations, mental health, and disease tracking are at risk, too. Careers in medical and health research, or in the government agencies established to foster scientific inquiry, have likely been cut short. It may never be fully clear how much what Trump has done will slow, or even prevent, critically important discoveries. 

The federal cuts have an outsized impact in New England, with Massachusetts alone accounting for nearly 3 percent of targeted National Institutes of Health funding, according to a Globe analysis of terminated grants compiled by Scott Delaney, an epidemiologist at the Harvard T.H. Chan School of Public Health, and Noam Ross of rOpenSci, a statistical analysis firm for the sciences.

The exact size of the reductions themselves is unclear from the data, but in Massachusetts, the administration targeted NIH grants that collectively were valued at more than $100 million, and grants from the National Science Foundation worth $17.6 million.

In some cases, while the Trump administration terminated only portions of these grants, it effectively brought entire projects to a premature halt, wasting money and years of work.

The state ranked eighth in the number of NIH grants terminated and fourth in NSF grants lost — behind California, New York, and Texas.

And those numbers don‘t include the $2.2 billion in federal funding to Harvard the Trump administration said it would freeze, which is being litigated. Delaney said the administration doesn‘t appear to have terminated existing grants to Harvard, but rather funding for new ones.

Elsewhere in New England, the NIH canceled a portion of a grant to Maine worth almost $40 million — one of the largest grants affected nationwide.

NIH cuts targeted grants worth more than $44 million to Connecticut, and almost $10 million to Rhode Island. New Hampshire also recorded multiple terminations, though the size of the affected grants is smaller.

Among the avalanche of terminations are National Science Foundation grants to study misinformation. The foundation, which targeted a total of $20 million in grants in New England, announced that such research “could be used to infringe on the constitutionally protected speech rights” of Americans.

But Mary Feeney, who until recently, directed the Science of Science program at the NSF that awarded many of these grants, said that rationale is “illogical,” and “Kafkaesque.” 

Read the full article here

WA lawmakers shift approach on closing center for people with disabilities

By Jacquelyn Jimenez Romero, Washington State Standard, April 27, 2025

A highly contested bill around the closure of a residential center for people with disabilities passed the Washington state House and Senate this weekend with mixed support from lawmakers and some major changes.  

Senate Bill 5393 intended to shutter Rainier School, a rehabilitation center in Pierce County for people with intellectual and developmental disabilities, by June 30, 2027.

But a Republican amendment approved on the House floor, and agreed to by the Senate, will instead prohibit new long-term admissions starting July 27 this year and stop short-term admissions starting June 30, 2027.

Under the amended version, the center would close when there are no more long-term residents. Former long-term residents would have the ability to return within one year of transitioning out of the center. 

The rewrite gained some Republican support but lost some among Democrats. 

Rep. Travis Couture, R-Allyn, was one of the lawmakers concerned that the bill was rushing the closure and didn’t have enough safeguards. He and other GOP legislators walked out of a House committee hearing this week when the panel advanced the legislation. 

After the amendment, he felt better about the bill, even though he still voted against it.

“This is a pill I can swallow,” Couture said. 

The bill would also require the Department of Social and Health Services to provide regular reports to the Legislature until June 1, 2030, and offer residents the choice of alternative placements with careful planning. 

It now heads to Gov. Bob Ferguson’s desk. 

Continued

Illinois family fighting state to keep child with disabilities closer to home

By Greg Bishop, The Center Square, April 29, 2025

A southern Illinois family is fighting in the courts to keep control of their son’s care.

Gregory Dorsey is 26 years old. His father William says he’s been diagnosed with autism, anxiety and ADHD. Because of his condition, Gregory recently became violent to himself and others at home. William said after 17 days in a Taylorville hospital, the family won a court order to require the state to place Gregory in a state-run facility nearby.

William said the state pressured them to give up guardianship.

“We don’t feel like we should have to give up our guardianship to get help for our son,” he told The Center Square.

The Illinois Department of Human Services did not immediately respond to questions seeking comment on what their policy is regarding exchanging guardianship for providing services.

William said he and his wife Danita are preparing for a sixth court hearing Thursday where the state is trying to send Gregory nearly four hours away.

“He needs consistency and the state is just wanting to move him all around, which is not going to help him at all,” he said.

William said they couldn’t have gotten this far without the help of state Rep. Charlie Meier, R-Okawville. Meier said it shouldn’t take an elected official to intervene to get things done.

“Repeatedly, for many years, I have gone to ask DHS for help and this is what we get, we get six court cases for this family and poor Greg to have to go through,” Meier told The Center Square.

Continued

Florida - Why a fight over one Florida complex could nix disabled housing statewide

By Christopher O'Donnell Tampa Bay Times, April 22, 2025

Olivia Murphy’s parents wanted The Villages at Noah’s Landing to be their daughter’s forever home, the place that would care for her when they no longer could.

Murphy, who was adopted from Russia when she was 3, has difficulties with learning, focus and memory after exposure to alcohol when she was in-utero. The Lakeland apartment complex offered low-rents for adults with intellectual and developmental disabilities.

Murphy, now 27, loved her apartment when she moved there in 2019. There was bingo and outdoor games, yoga and craft classes. The complex’s bus would take tenants to the mall, the grocery store and the cinema.

The activities were suspended at the start of the pandemic but the complex continued charging a $235 monthly fee. Many parents stopped paying.

When activities resumed, Noah’s Landing management made it clear they were only for “VIP” tenants, those who paid the fee. The atmosphere at the complex turned bitter over access to activities. Soon, reports were made to police and some residents were threatened with eviction over behavior that was typical for their disability, according to a lawsuit filed in a Tampa federal court in January.

But the dispute has snowballed into something much bigger: a civil rights challenge that threatens not only Noah’s Landing, but other supportive housing complexes across Florida subsidized with millions of state dollars.

Like race, sex and religion, disability is a protected class under the Fair Housing Act. So a housing complex with only disabled residents can be no more legal than one that admits only white tenants, the lawsuit argues.

The outcome could have far-reaching implications. The same model of housing for people with developmental disabilities like autism, Down syndrome and cerebral palsy is used at six complexes across Florida. That includes a Tallahassee apartment complex founded by Democratic State Rep. Allison Tant, which opened last year. More are under construction.

“For years and years, they’ve been building these places and it really does not comply with federal law,” said Matthew Dietz, an attorney and disability rights professor at Nova Southeastern University who is representing four parents in the Noah’s Landing case.

Apartments at Noah’s Landing resemble student housing. Residents share a living room and kitchen and have their own bathroom connected to their room, which has a lockable door.

At least 80% of the 126-person capacity is required to be occupied by people with intellectual and developmental disabilities. That’s based on a land covenant approved as a condition of the $14 million in tax credits the nonprofit received from the Florida Housing Finance Corp. to offset construction costs.

But the community bills itself as a place for people with disabilities and has not made its low-rent apartments available to non-disabled people, the lawsuit states.

That’s problematic since it leaves tenants segregated and deprived of the benefits of living in an integrated community where they could make friends and have interaction with neurotypical people, said Katherine Hanson, director of advocacy, education and outreach with Disability Rights Florida, a Tallahassee nonprofit.

It also may be a violation of a federal regulation intended to discourage the creation of institution-like settings. Individuals with disabilities who receive services like therapy through Medicaid must live in places that are, as much as possible, integrated into the broader community, federal rules say. Many residents at Noah’s Landing receive Medicaid services.

That’s problematic since it leaves tenants segregated and deprived of the benefits of living in an integrated community where they could make friends and have interaction with neurotypical people, said Katherine Hanson, director of advocacy, education and outreach with Disability Rights Florida, a Tallahassee nonprofit.

It also may be a violation of a federal regulation intended to discourage the creation of institution-like settings. Individuals with disabilities who receive services like therapy through Medicaid must live in places that are, as much as possible, integrated into the broader community, federal rules say. Many residents at Noah’s Landing receive Medicaid services.

“Historically, our society has isolated and segregated people with disabilities, including by warehousing them in institutions,” Hanson said in an email. “People with disabilities have the fundamental right to be fully integrated into society.”

Read the full article here

Members of ENC autism community call to stop possible funding cuts that could jeopardize crucial services

By Merit Morgan, WITN, April 28, 2025

Members of the autism community in Eastern Carolina are expressing their concerns as some Medicaid funding is at risk.

This comes after the House Budget Committee passed a proposal directing the Energy and Commerce Committee to cut at least $880 billion from several programs, including Medicaid, over 10 years, according to the Autism Society of NC.

Monique Bunn, a mother of a boy with Autism, says, “I can’t imagine what cutting funding would do to those families who need it; it could cause a severe issue.”

In February, House Republicans on the budget committee voted through a proposal to order the Committee on Energy and Commerce, which oversees Medicaid, to reduce the U.S. budget deficit by at least $880 billion for fiscal years 2025 through 2034.

This month, the House passed a Senate-amended budget proposal that keeps this guidance. It’s a move, N.C. Autism Society Communications Director, David Laxton, says will negatively impact the autism community.

Laxton told WITN, “They’re not just taking money from the tax system. It’s also one of those things that provides treatment and different therapy options like ABA services that can help somebody become more independent and help them stay in the home.”

Laxton says there are fears surrounding how this could affect people not only in Eastern Carolina but the entire state now and in the future. He told WITN, one of the services that could be impacted is Innovations Waiver Services, a Medicaid program that helps people with intellectual disabilities live in a community setting, instead of an institution or group home.

“We have about 13,000 folks that receive what’s called Innovations Waiver Services. We have a waiting list of about 18,000-19,000 who are waiting and who are eligible, but those slots don’t exist, so it’s actually something where a lot of people are benefiting from it, there’s so many more people that are eligible for it but we don’t have that funding provided just yet and that’s another thing that might be impacted,” he said.

Continued

Federal cuts leave North Dakota disability group ‘heartbroken’ after third of employees laid off

By Peyton Haug, InForum, May 1, 2025

The North Dakota Center for Persons with Disabilities is scrambling to figure out how it will continue operations after one-third of its staff was suddenly terminated due to federal cuts.

“For 35 years, we have earned our keep and managed it really well,” said Lori Garnes, the organization’s executive director. “It’s just a huge number of potential cuts in such a short amount of time that throws us off kilter.”

Of the organization’s 72 staffers, 23 received letters Wednesday, April 30, notifying them that their positions are to be terminated.

“Not a single one of these employees did anything that would have led to them not being able to work here,” she said. “It’s purely a funding situation.”

The group has been in place since October 1990 and is housed at Minot State University. It has 20 active projects that provide a vast range of services statewide, including in-home support for those with developmental disabilities, newborn disability screenings, transitional services for adults with disabilities, and related onsite assistance for schools, landlords and workplaces.

Five of those projects have been paused or eliminated entirely.

A $1 million grant, administered by the Centers for Medicare and Medicaid Services’ Navigator program, will be defunded in August, according to Garnes. The federal program assists people in accessing health care and insurance.

Two grants valued together at around $60,000 are paused. The money came from the State Council of Developmental Disabilities and is used to aid child care providers and employers in working with children and people who have disabilities.

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N.J. special education students at risk amid proposed federal cuts

By Jessie Gomez, Chalkbeat Network via NJ . Com, April 29, 2025

Thousands of students with disabilities in New Jersey could face significant setbacks as proposed federal cuts to special education funding, staff reductions, and changes in oversight could worsen existing challenges, particularly in low-income districts like Newark, advocates say.

As the Trump administration moves forward with changes at the federal Education Department, school districts like Newark that serve a larger population of vulnerable students face even greater risks since they rely on federal and state funding to provide special education services.

“I think that families are scared. I was going to say nervous, but honestly, I think it’s more than just being nervous. They’re afraid, and rightfully so, based on what’s happening,” said Carolyn Hayer, executive director for the SPAN Parent Advocacy Network.

Hayer and Nina Peckman, an attorney at Advocates for Children of New Jersey, spoke about the potential impacts of shifting special education oversight, federal funding cuts, and staffing reductions at a virtual panel last week hosted by the Center for Cooperative Media at Montclair State University and moderated by Chalkbeat Newark’s Jessie Gomez.

Hayer recalled what it was like before the creation of the federal Education Department and how children with disabilities were often excluded from public schools. One of her biggest concerns is, “If we go backwards to that, what will that mean for our children?”

“Primarily, it will make it much more difficult for families to ensure that their children have access to the services that they need and are entitled to,” Hayer added.

Read the full article here

Oklahoma cuts wait time for developmental disabilities services from 13 years to 1 Year

By Eden Jones, News 9, April 28, 2025

The state says it is making great progress in cutting down wait times for disability services. The wait is down from more than a decade to only one year. 

Here's a By the Numbers Breakdown

$32.5 million in 2022

The effort to cut wait times started in 2022 when state lawmakers put more than 32.5 million dollars toward helping nearly 5,000 people who had been waiting for support services. 

$3 million in 2025

This year, the Oklahoma legislature added another 3 million dollars to keep that momentum going.

1,300 applicants

That 3 million dollars will accelerate the processing of more than 1,300 DDS applicants who applied between May 2022 and May 2024.

120 applications per month 

120 families a month apply for DDS services.

9,000 families served

DDS says it serves more than 9,000 families.

Oklahoma Human Services is holding 2 free events in May in both Oklahoma City and Tulsa to give families more information on how to get started. 

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[Please click on blue link to view information about the bill]

VOR SUPPORTS:

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

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

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

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

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

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

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

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

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

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

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

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



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

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

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

VOR OPPOSES:

H.R. 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.