January 31, 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.

Groundhog Day

And not unlike the movie of that name, it does seem that every year we have to do the same things over and over and over again. We go to D.C. and ask members of congress to support our loved ones and to preserve a continuum of care for all people with intellectual and developmental disabilities and autism.

But this year is different.

This year, we have to defend Medicaid, the very cornerstone of all I/DD and autism Services.

This year, we're not just advocating for a full continuum of care.

We are advocating for care.

Period.

Any changes to Medicaid will affect services for all people with I/DD and autism.

Lowering the FMAP, or initiating a Block Grant system, or imposing per capita caps

will be a disaster for our community.

It will pit one group of people with I/DD against another for whatever resources are available.

And historically, people on the severe / profound end of the spectrum have the most to lose.

This year, we ask that you join us on Capitol Hill,

or donate to support our work:

Please join us on Capitol Hill

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

Please register early, to reserve your spot

Registration is free until February 1, 2025

So please register now!

To register for the Legislative Initiative,

Please Click Here

Sponsorship Opportunities

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

In recent weeks, we have featured a number of articles on the likely effects of Medicaid cuts would have for our loved ones with I/DD and autism.

We have been looking for articles from conservative sources explaining the reasoning behind cutting Medicaid, but have not seen any. Maybe we haven't been looking in the right places. If that is the case, we accept the blame.

The following defense of Medicaid cuts comes not from conservative media, but from NPR. It does quote several of the people who believe cutting Medicaid will be good for the country and present their case for making these cuts.

Why many Republicans think shrinking Medicaid will make it better

WBAA | By Ryan Levi, WBAA News - All Things Considered, January 27, 2025

With President Trump’s inauguration, Republicans are officially in control in Washington. Congressional leaders are looking to make big reductions to federal spending, and they’ve singled out Medicaid as a program where they could find lots of savings.

The ideas being proposed could amount to more than $2 trillion of cuts to the country’s public health insurance program for low-income and disabled Americans over the next decade — and could potentially push millions of people off the program.

Many conservatives and libertarians have long believed that a smaller Medicaid program that covers fewer people would be a better Medicaid program.

“There has never been a time when the Medicaid program has worked well,” said Michael Cannon, director of health policy studies at the libertarian Cato Institute.

Tradeoffs spoke with 13 experts who, collectively, have decades of experience working on Medicaid for conservative think tanks, Republican presidents, members of Congress or state Medicaid programs. They did not agree on everything, but a few themes emerged that illustrate why many Republicans want to shrink the program.

Some conservatives question whether Medicaid makes people healthier

Medicaid provides health insurance to 80 million low-income and disabled Americans and, in 2023, cost taxpayers $870 billion in 2023. Some conservatives cite the highly regarded Oregon Medicaid Experiment that found Medicaid does little to improve people's physical health.

“Every member of Congress should be asking questions on both sides of the aisle about, hey, we're spending hundreds of billions of dollars [on Medicaid]. What are we getting for it?” said Josh Archambault, a senior fellow at the Cicero Institute.

Archambault and others place a lot of value on the Oregon experiment because it's the only randomized study (the gold standard in research) of the impacts of Medicaid. In 2008, Oregon used a lottery to expand its Medicaid program, which allowed researchers to compare outcomes after two years for people who received Medicaid and those who didn’t.

They found that people on Medicaid were more likely than those without health insurance to get preventive care and to report being in better health. Those on Medicaid were also less likely to be depressed or get hit with big medical bills. But the researchers turned up no differences between the two groups on three specific measures of physical health: cholesterol levels, blood pressure and keeping diabetes under control.

“I think that should raise some very big questions in our mind about the effectiveness of Medicaid,” Archambault said.

Most conservative reforms would cut federal Medicaid funding 

Republicans have floated numerous proposals to reform Medicaid. While they have yet to release any detailed proposals, they all pursue the same goal.

“Ultimately, you have to cap the amount of federal funding that states are able to get,” said Chris Pope, a senior fellow at the conservative Manhattan Institute.

One option would be for Washington to pay states less to cover the 21 million people added to Medicaid under Obamacare. The federal government currently picks up 90% of the costs to cover low-income adults who make up to $45,000 in a family of four.

A proposal by the conservative Paragon Health Institute would gradually reduce the federal government’s share over the next decade to the rate Washington pays for traditional Medicaid enrollees — between 50% and 77%, depending on each state's per capita income. Paragon estimates the move would save the federal government $250 billion over the next decade, though it would increase the uninsured population by 3 million people.

The nonpartisan Congressional Budget Office estimated that a similar proposal would save the federal government $561 billion over 10 years; the CBO assumes some states would choose to “un-expand” their Medicaid programs, potentially kicking millions of people out of the program. At least nine states have so-called trigger laws that would quickly end their expansions if the federal contribution to Medicaid funding was reduced, though the states could change those laws.

Cutting Medicaid spending comes with tradeoffs

Many conservatives agree that shrinking federal spending on Medicaid will have two major benefits. One is cost savings — less Medicaid spending could free up cash to spend on other priorities like schools, public safety or curbing the national debt.

Liz Matney, who ran Iowa's Medicaid program from 2021 to 2024, also argues that sending states less money would encourage them to narrow their focus to the original Medicaid population.

"Medicaid's original purpose was to provide medical services to individuals with disabilities and low-income families," Matney said. "It's a challenge for states to focus on making solid improvements in these areas when their focus is continuously shifted to shinier priorities."

Many studies show expanding Medicaid has improved access to care for low-income people. But some conservatives point to a handful of papers showing people on Medicaid had to wait longer to get appointments, ambulances took longer to respond to medical emergencies, and spending on kids and seniors grew more slowly than in non-expansion states.

Several former state Medicaid directors from Republican-led states said they would welcome the increased flexibility to run their programs as they see fit — a flexibility that is often a part of proposals that would reduce federal Medicaid spending. But several are also concerned about the potential health and financial consequences to patients if Washington imposes severe cuts and millions of people lose their Medicaid coverage.

Barbara Roshon Sears, who ran Ohio’s Medicaid program from 2016 to 2018, said state Medicaid programs and hospitals are incredibly reliant on federal funding. She said she worries especially about older Americans and people with disabilities, who account for most of Medicaid spending.

“Those are the populations that get hit if I run out of [federal] dollars,” Sears said.

Can Republicans get any of these cuts passed? 

Even many Republicans eager to cut Medicaid believe it will be difficult to make sizable changes to the program in 2025, despite full control of Congress and the White House.

Democrats are expected to oppose any Medicaid reductions, and hospitals have historically done the same because Medicaid payments help keep the lights on. Some congressional Republicans are already pushing back.

“It's very easy to propose these fixes. It is very hard to get them passed,” said Tom Scully, whose efforts to reform Medicaid date back 35 years.

Case in point, Republicans failed to pass similar Medicaid fixes during President Trump’s first administration, the last time the party had full control in Washington.

The Trump administration, on its own, could encourage states to add work requirements or turn their federal subsidies into block grants. Any executive action, however, would have far less impact than if Congress passed changes to the fundamental shape of the program.

“Something should have been done to fix this 40 years ago. And 30 years ago and 20 years ago and 10 years ago," Scully said. "But it’s never happened because the local and state politics are too brutal, and it's too complicated — people back off and surrender.”

Read the full article here

Lately, we have become increasingly aware of the lack of services for individuals with dual diagnoses of autism and serious mental illness (SMI).

Our siloed system of services, with a gap between DD Services for people with I/DD and autism, and mental health services for people with SMI (including but not limited to schizophrenia), makes it difficult to find facilities in which to treat these individuals or staff trained in the proper treatment methodologies. Add in the lack of services for people with violent behavioral disorders, and we see a huge failure in our system that needs to be addressed immediately.

Several states are in the process of reviewing and reinvesting in services for these two populations separately, but the need remains to address those who have one foot in each system, and are told by the DHS "We can't take this person; they have autism" and by the DDS "We can't take this person; they have a mental illness".

NC man with disabilities waits months in an ED for a better place to stay

By Emily Vespa, NC Health News, January 24, 2025

For more than four months, 32-year-old Jackson Hedgepeth has lived in a small room at Atrium Health Union hospital in Monroe, waiting for help.

Jackson has autism, and he’s nonverbal. He’s been on the waitlist for admission to J. Iverson Riddle, a state-operated center that provides services for people with intellectual or developmental disabilities (often referred to as I/DD) for more than a year. 

His mom, Vickie Hedgepeth, said he has outbursts that he can’t control, and when that happens, he often hurts himself or those around him. In recent years, after he was abused by caretakers — one at a day program and another who worked with him at his house — those outbursts have escalated. Sometimes he bites himself or pulls Vickie’s hair. 

Afterwards, he always uses sign language to say “I’m sorry.”

After an outburst in September, Vickie was desperate for help. She called NC START, a state crisis program for people with I/DD that has supported Jackson in the past. The next morning, members of the START team met the family at the Atrium Health emergency department. 

Since then, Jackson hasn’t left. He’s been on a “social hold” since September 20, confined to a room with one window and a television to watch the Disney channel. He only interacts with people when they bring him food or medicine, Vickie said. Her visits with Jackson are limited to avoid triggering his aggressive behaviors.

In North Carolina, emergency departments have increasingly become the primary crisis option for people in need of mental or behavioral health care. Some wait days or weeks in the emergency department for a bed at one of the state’s psychiatric hospitals. Jackson spent three months in the emergency department before he was moved to a hospital bed upstairs in late December, Vickie said.  

Vickie said she’s pleaded with state officials to admit him into Riddle, but they’ve told her there are no beds available. She’s looked out of state, but Jackson didn’t qualify for viable options. 

A North Carolina Department of Health and Human Services spokesperson did not make staff available for an interview and said the agency couldn’t comment specifically on an individual due to privacy protections. 

About 85 percent of people in state developmental centers have lived there for many years and have “significant complex, medical needs without significant behavioral health needs,” an NCDHHS spokesperson said in an email. 

Even as beds open up on units for people with complex medical needs, all people on the waitlist need placement in units that support people with complex behavioral health needs, which are currently at capacity, the spokesperson added.  

Continued

A 6-year-old tried to hang himself before he got help. This is Iowa's mental health crisis

Michaela Ramm, The Des Moines Register, January 29, 2025

Two years ago, Bailey Prieve’s son was beyond his breaking point.

The then-6-year-old Urbandale child, struggling with a half-dozen diagnoses that include post-traumatic stress and mood disorders, had been increasingly aggressive toward his family over the past year. 

By fall 2022, Prieve and her husband resorted to locking themselves in bedrooms or their cars to separate themselves from his violent outbursts. One day, after an incident at football practice, Prieve said her son came home upset and stormed into his room.

She went upstairs to check on him a few minutes later and found him with a bungee cord around his neck, trying to hang himself from his loft bed.

“Had I waited five more minutes to come up and check on him, we wouldn't have him here with us,” Prieve said.

At the time of her son's attempted suicide, the family had been on waiting lists for therapists and other services for months. Though state agencies had promised to support her after she adopted her son from Iowa’s foster system, Prieve said the family had fallen off of everyone’s radar during the COVID-19 pandemic, leaving her clueless on where she could go to find him help. 

It wasn’t until his mental health reached a nearly fatal crisis that doors finally opened to get the treatment he needed, she said.

“It’s terrible it takes something like that to get help,” she said. “The trauma that that caused our family was huge.”

Stories like the Prieve family’s have become sadly familiar among experts and advocates in the state. Many families in Iowa have struggled to find appropriate mental and behavioral health care for their children before circumstances become dire — and, in some tragic cases, help comes too late.

Adolescent and teen mental health problems have significantly increased over the past decade, with demand for help higher than ever. The challenges, seen in Iowa and nationwide, come as workforce shortages and an overall lack of services for children and teens statewide have further hindered access.

In fiscal year 2023, state data show, 7,689 youths under age 21 received mental health and substance use disorder services funded through the state regional mental health system, according to records obtained by the Des Moines Register. That is a 40% increase from fiscal year 2018.

Continued

Montana Eyes $30M Revamp of Mental Health, Developmental Disability Facilities

By Sue O'Connell and Mike Dennison, Kff Health News, January 27, 2025

As part of a proposed revamping of the state’s behavioral health system, Republican Gov. Greg Gianforte’s administration is looking into moving a facility for people with developmental disabilities, beefing up renovations at the Montana State Hospital, and creating a Helena unit of that psychiatric hospital.

The changes, backers say, would fill gaps in services and help people better prepare for life outside of the locked, secure setting of the two state facilities before they reenter their own communities.

“I think part of the theme is responsibly moving people in and out of the state facilities so that we create capacity and have people in the appropriate places,” state Sen. Dave Fern (D-Whitefish) said of the proposed capital projects during a recent interview.

Fern served on the Behavioral Health System for Future Generations Commission, a panel created by a 2023 law to suggest how to spend $300 million to revamp the system. The law set aside the $300 million for improving state services for people with mental illness, substance abuse disorders, and developmental disabilities.

Gianforte’s proposed budget for the next two years would spend about $100 million of that fund on 10 other recommendations from the commission. The capital projects are separate ideas for using up to $32.5 million of the $75 million earmarked within the $300 million pool of funds for building new infrastructure or remodeling existing buildings.

The state Department of Public Health and Human Services and consultants for the behavioral health commission presented commission members with areas for capital investments in October. In December, the commission authorized state health department director Charlie Brereton to recommend the following projects to Gianforte:

• Move the 12-bed Intensive Behavior Center for people with developmental disabilities out of Boulder, possibly to either Helena or Butte, at an estimated cost of up to $13.3 million.
• Establish a “step-down” facility of about 16 beds, possibly on the campus of Shodair Children’s Hospital in Helena, to serve adults who have been committed to the Montana State Hospital but no longer need the hospital’s intensive psychiatric services.
• Invest $19.2 million to upgrade the Montana State Hospital’s infrastructure and buildings at Warm Springs, on top of nearly $16 million appropriated in 2023 for renovations already underway there in an effort to regain federal certification of the facility.

Continued

South Carolina - 10 takeaways from Governor McMaster's State of State address

By A.J. Jackson, Greenville News via Independent Mail, January 30, 2025

South Carolina Gov. Henry McMaster gave his eighth 'State of the State' address Wednesday night, with proposals that included tax reforms, increased pay for teachers and first responders, the reconfiguration of two statewide mental health departments, and disaster relief.

Here are [2 of the] 10 takeaways from McMaster's speech:

Consolidation of two statewide mental health agencies

McMaster proposed reviewing and funding the state's behavioral health delivery systems. He described a fragmented and confusing process that people seeking services must navigate while others in need are never treated or fall through the cracks because the agencies responsible for helping don't collaborate or communicate.

"We must fix this," he said, recommending consolidating the Department of Mental Health and Department of Disabilities and Special Needs as cabinet-level agencies accountable to the governor. 

Newly proposed neurological health center in South Carolina

He also proposed lawmakers assist in funding a new neuro-health rehabilitation center with 80 beds for critical care and 32 beds for neurological rehabilitation. The newly constructed health facility would be managed by the Department of Health & Human Services and operated by the University of South Carolina.

Read the full article here

West Virginia health care advocates decry proposed cuts to Medicaid

By Lori Kersey, West Virginia Watch, January 27 2025

West Virginia health care advocates say proposals to cut trillions in federal funding for Medicaid would close rural hospitals and worsen the state’s maternal and infant health care “crisis,” among other things.

Protect Our Care, a national non-profit organization aimed at protecting health care for Americans, hosted the news conference Friday with representatives from West Virginians for Affordable Care and Planned Parenthood. 

According to health policy research organization KFF, Republicans in the U.S. House of Representatives are considering policy changes to cut the federal Medicaid budget by $2.3 trillion. Proposals include making Medicaid a block grant program, reducing the federal matching amounts, putting caps on the amount of spending per person and imposing work requirements for the health care program. 

“These proposals would blow an estimated $235 million hole in West Virginia’s state budget and leave tens of thousands of people uninsured,” Ellen Allen, executive director of West Virginians for Affordable Health Care said Friday. 

As of October, more than 472,000 West Virginians were enrolled in Medicaid. The joint state and federal health care program covers 72 million Americans. The federal government currently pays about 74% of the state’s spending on Medicaid, according to KFF. 

Drew Galang, a spokesman for West Virginia Gov. Patrick Morrisey said Friday the governor is still reviewing state budget items, which he has said faces a $400 million deficit, and has not outlined any specific proposals.

Medicaid helps fund West Virginia’s rural hospitals, Allen said, by helping to ensure that patients can pay for their care. Rural hospitals in states that have expanded their Medicaid programs under the Affordable Care Act are less likely to close, she said. If Congress cuts Medicaid expansion, more rural hospitals will be forced to close, she said. 

“Gutting Medicaid will take health care away from hardworking families across West Virginia, instead of helping them,” Allen said. “They deserve better. We deserve better. It is within our power to do so.”

Continued

Gov. Pritzker Highlights Devastating Impact of Federal Cuts for Illinoisans

Unconstitutional federal funding cuts would impact the most vulnerable Illinoisans

Press Release, Office of Governor J.B. Pritzker, January 28, 2025

Today, Governor JB Pritzker directed agencies to report on potential impacts of President Trump’s illegal and unconstitutional federal funding cuts for Illinois’ most vulnerable communities and people. While the State will continue fighting these illegal actions, there are several areas of urgent concern the State will continue monitoring:

Access Issues for Federal Funding Portals

Despite official information from the federal government stating that programs that provide assistance directly to individuals will not be impacted, state agencies and partner organizations reported issues accessing payment systems throughout the day on January 28. Federal officials have not responded to requests for more clarity or on the status of payments and the systems, further adding to the uncertainty. Illinois officials experienced issues with the following systems:

• Payment Management System (PMS) portal operated by the U.S. Department of Health and Human Services (HHS). Throughout the day on January 28, 2025 Illinois officials and partners were unable to access the portal for at least part of the day for following programs:
• Medicaid and ACA expansion populations
• Home-delivered and congregate meal sites for seniors,
• Public Assistance and Hazard Mitigation Grant Program (disaster recovery and mitigation programs)
• Child care and Head Start programs
• Temporary Aid to Needy Families (TANF)
• Vaccinations and disease surveillance
• 
  
• Electronic Line of Credit Control System (eLOCCS) portal operated by the U.S. Department of Housing and Urban Development (HUD).
• Rental assistance programs for people who are homelessness and/or have disabilities.

Continued

Advocates warn budget cuts will harm Maryland residents with disabilities 

By Emma Tufo, Capital News Service, January 26, 2025

Advocates for disabled people in Maryland are concerned about proposed cuts to their state programs, warning that the reductions could hit quality of care for some of the state’s most vulnerable residents.

During a hearing this week, advocates described the far-reaching consequences these cuts could have on the state’s Developmental Disabilities Administration.

Mat Rice, executive director of People on the Go Maryland, urged state lawmakers to “not turn back the clock on a marginalized community.”

“Are we saying to my staff person that is here with two kids, that he might have to take a potential pay cut?” Rice said at the Thursday hearing. “There is a human cost here.”

But Helene Grady, secretary of the Department of Budget and Management, said the “cost containment” measures were intentionally designed to minimize disruption to essential services.

“There are many potential options within the DDA program that are not on the table, and very intentionally not on the table, because of the impact they would have to the services the state is providing,” she said. “The package that is on the table for cost containment was structured in a very targeted fashion to impact the areas and the flexibilities within the program.”

Gov. Wes Moore has proposed $2 billion in cuts in his fiscal 2026 budget, as part of an overall attempt to address the state’s looming $3 billion deficit. The DDA’s spending has grown in recent years, agency officials said.

Moore’s proposed reductions to the current fiscal year budget would adjust wages for overall savings to the state. One of those changes would eliminate geographic differential rates, which currently pay providers more if they work in areas with a higher cost of living.

Continued

North Carolina - Schools are struggling to hire special education teachers. Parents are filing complaints

By Emily Walkenhorst, WRAL News, January 24, 2025

North Carolina schools are increasingly struggling to hire and retain qualified special education teachers, leaving some students without properly trained faculty who know how to provide specialized services.

A worsening shortage of such teachers is also leaving schools vulnerable to state scrutiny over whether they’re following special education law, state records indicate.

There’s no official record of how often people file complaints of unqualified staff providing special education services. But a review of state records shows it happens frequently across the state and that schools are increasingly at risk of violating state and federal guidelines.

Just last month, the North Carolina Department of Public Instruction found that a Wake County elementary school violated state and federal law when it failed to provide special education services via a certified special education teacher.

The school system was found in violation of special education laws on personnel qualifications the year before, too. And in recent years, so have other North Carolina school systems and charter schools, according to DPI records that outline corrective actions for the schools.

A Wake County teacher and a parent told WRAL News they’re worried kids with disabilities are being short-changed. Special education teachers serve students with disabilities, providing them with adapting teaching methods and overseeing the implementation of the students’ individual education programs.

Those programs outline accommodations the students need to meet the goals their parents and teachers have agreed to. Without them, students with disabilities would be left to learn from people not trained to understand their disabilities or modify instruction for them, risking whether those goals are met and making it more difficult for them to advance in the public school system.

Terri Schmitz, a fourth-grade teacher at Swift Creek Elementary School in Garner, said she was asked to provide special education services to three students last school year, despite not being certified in special education. She was asked after her school went more than a year without a full-time special education teacher for grades above kindergarten, according to state education officials. During that time, a long-term substitute was the head of the classroom, records show. In February, the school hired a permanent teacher who was emergency-licensed on a “permit to teach” and also not certified to provide special-education services.

To compensate for the lack of qualified staff, the school system had a certified teacher oversee services, records show. The teacher was charged with meeting with the substitute and the emergency teacher once per month and assisting with lesson plans.

Schmitz said that wasn’t enough, so she filed a complaint with the Department of Public Instruction, which oversees the state’s public schools.

The state found the school system didn’t comply with federal special education law because it lacked a certified teacher.

“I was worried about students getting accommodations afforded to them in their [individualized education programs],” Schmitz said. Those programs are legally binding documents that require certain services and accommodations to help students with disabilities learn.

Schools are noncompliant with state and federal special education laws any time they have an unqualified teacher providing special education services, according to DPI. With growing job vacancies and hiring challenges, it’s difficult for schools to remain compliant.

Continued

Hundreds of children with disabilities (still) wait for promised preschool seats in NYC

By Alex Zimmerman, Chalkbeat New York, January 29, 2025,

Mirdella arrived in New York City from Peru two years ago, hopeful she’d find a public school that could support her son, who has autism. The Peruvian schools offering the services he needed were private and too expensive.

The mom secured a special education learning plan from the city’s Education Department in September, guaranteeing her 4-year-old son, Matheo, a seat in a small specialized classroom and a range of therapies.

That learning plan, however, has been gathering dust.

Matheo, who is non-verbal, has spent months at the cramped Manhattan shelter where the family lives awaiting a spot in a program. He is among hundreds of children who waited this fall for a preschool seat nearly two years after Mayor Eric Adams promised one for every child with a disability — as required by law. The ongoing lack of seats is likely to raise questions at a Thursday City Council oversight hearing on special education.

“He’s not really doing anything in particular,” Mirdella said in Spanish. She requested her family be identified using their middle names for privacy reasons. “It’s basically February, and he still isn’t in school.”

Adams has taken some action on the issue, setting aside funding for salary bumps to bring special education preschool teachers who work at community organizations to be more in line with starting salaries of their public school counterparts. The city also invested $55 million this school year to open new preschool seats for children with disabilities, opening 456 new slots in September, Education Department officials said, with roughly 280 more in the works.

But 450 children are currently stranded at home without seats, department officials confirmed. Meanwhile, Adams’ preliminary budget for next school year did not renew the $55 million for new classrooms, raising fresh concerns that the number of students sitting at home could creep back up.

“Providing these classes is not optional,” Randi Levine, policy director at Advocates for Children, an organization that helps low-income families navigate the special education system, wrote in an email. “Given the City’s legal obligation, the new preschool special education classes should have been among the first programs to get long-term funding.”

Continued

Lewiston private school sues state, family over ‘stay put’ rule for disabled students

By Riley Board, The Portland Press-Herald, January 30, 2025

A private special education school in Lewiston is suing Maine’s education department, the Lewiston school district and a family after it was ordered to keep teaching a student who had injured staff.

Spurwink, a Portland nonprofit that operates four special purpose private schools for students with developmental disabilities, filed a lawsuit last week in U.S. District Court in Portland alleging that the defendants are misinterpreting a federal law that says students with disabilities have a right to stay in their school placement.

According to the suit, a 19-year-old student referred to as “Tommy Doe” had several diagnoses, including non-verbal autism and a seizure disorder, which qualified him for special education services under the federal Individuals with Disabilities in Education Act, known as IDEA.

Tommy attended Spurwink’s Lewiston Day Treatment school from January 2023 to November 2024. During that time, the complaint alleges, he was frequently violent toward himself and would bite, hit and kick staff members.

Spurwink says it started to discuss removing the student from the program in October 2024 because staff members did not think they could safely care for him, and it accelerated that decision the following month after he bit three staff members, all of whom needed emergency medical care.

The parents requested a due process hearing with the state in November, saying schools have an obligation under IDEA to keep a student in their current placement while the family seeks a new school.

A state hearing officer agreed, writing that Spurwink Lewiston Day Treatment was not allowed to unilaterally discharge Tommy, and ordered that the decision be reversed immediately.

But in its lawsuit, Spurwink argues that as a private school it is not subject to the provisions under IDEA, and the state erroneously applied the law.

“As this case illustrates, the untenable situation occurs when students need a more intensive level of supervision and treatment than the school can safely provide,” Spurwink wrote in the lawsuit.

Continued

This has been a roller coaster week, with President Trump freezing federal funding, then for healthcare programs, legislative and judiciary actions to attempt to halt the freeze, the White House announcing on X that they would halt the freeze, then adding to the confusion by issuing statements that were not clear as to which programs might be affected, and when.

Trump Effort To Freeze Federal Funding Sows Confusion For Medicaid, Disability Programs

By Michelle Diament, Disability Scoop, January 30, 2025

The Trump administration is walking back a directive to pause trillions of dollars in government spending that bred uncertainty about the impact on everything from Medicaid to special education, employment and housing assistance for people with disabilities.

The White House Office of Management and Budget issued a memorandum Wednesday rescinding an order issued earlier in the week to halt federal grant, loan and other financial assistance programs with limited exception.

The original directive was set to take effect Tuesday evening, but was temporarily delayed by a federal judge before the White House decided to pull it altogether. The broad language in the order had set off widespread confusion as federal officials, state governments, nonprofits, disability advocates and others struggled to grasp exactly what the implications of the directive might have been.

The stakes are especially high for people with developmental disabilities who often rely on a myriad of federal programs to access housing, employment supports, health care, education, home and community-based services and much more, advocates say.

“Given the vast amount of uncertainty and contradictory information surrounding the policy, it is very difficult to say what programs or grants it will and won’t affect,” Zoe Gross, director of advocacy at the Autistic Self Advocacy Network, said earlier this week.

Even the White House struggled to establish which programs were included. The original memo specifically exempted Medicare and Social Security, but did not comment on Medicaid. By midday Tuesday, even before the order was set to take effect, U.S. Sen. Ron Wyden, D-Ore., said all of the online portals state governments use to access federal Medicaid payments were down.

The American Association of People with Disabilities, or AAPD, said that even after the original memo was rescinded they “continued to hear from people with disabilities, disability programs, and others facing substantial, disruptive problems with accessing funds from government grants, loans, and programs.”

Though the original memo was rescinded, disability advocates remain uneasy.

“Any actions that disrupt the ability of states to access federal funding, even as a result of confusion or misunderstanding, has direct consequences on the ability of people with intellectual and developmental disabilities to access services,” said Lydia Dawson, vice president for government relations at the American Network of Community Options and Resources, or ANCOR, which represents disability service providers nationally. “While we understand that the memo has since been rescinded, we are concerned that there could be other similar harmful policies pursued in the future. That is why we urge the administration to always be clear in its direction that actions pursuant to any executive order should not impact access to funding or services intended to support people with disabilities to remain in their homes and communities.”

Read the full article here

Trump White House rescinds order freezing federal grants after widespread confusion

By Chris Megerian and Zeke Miler, Los Angeles Times, January 29, 2025

President Trump’s budget office on Wednesday rescinded a memo freezing spending on federal grants, less than two days after it sparked widespread confusion and legal challenges across the country.

The Monday evening memo from the White House Office of Management and Budget sparked uncertainty over a crucial financial lifeline for states, schools and organizations that rely on trillions of dollars from Washington and left the White House scrambling to explain what would and wouldn’t be subject to a pause in funding.

The White House confirmed that OMB pulled the memo Wednesday in a two-sentence notice sent to agencies and departments, but said that Trump’s underlying executive orders targeting federal spending in areas such as diversity, equity and inclusion and climate change remained in place.

Administration officials said the notice to halt loans and grants was necessary to conduct a review to ensure that spending complies with Trump’s recent blitz of executive orders. Agencies had been directed to answer a series of yes or no questions on each federal program by Feb. 7. The questions included “does this program promote gender ideology?” and “does this program promote or support in any way abortion?”

Still, the vaguely worded memo, combined with incomplete answers from the White House throughout the day, left lawmakers, public officials and average Americans struggling to figure out what programs would be affected by the pause. Even temporary interruptions in funding could cause layoffs or delays in public services.

The freeze was scheduled to go into effect at 5 p.m. Tuesday, but was stayed by a federal judge until at least Monday after an emergency hearing requested by nonprofit groups that receive federal grants. An additional lawsuit by Democratic state attorneys general was also pending.

“The Executive Orders issued by the President on funding reviews remain in full force and effect and will be rigorously implemented by all agencies and departments,” White House Press Secretary Karoline Leavitt said, blaming the confusion on the courts and news outlets, not the administration. “This action should effectively end the court case and allow the government to focus on enforcing the president’s orders on controlling federal spending.”

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Federal funding freeze leaves Northwest Indiana recipients uncertain  

By Alexandra Kukulka, The Chicago Tribune, January 27, 2025

Community health centers, like HealthLinc, operate on a thin margin budgetarily, so announcing a funding freeze “can cause chaos and panic,” said CEO Melissa Mitchell.

The next question, Mitchell said, was what does it mean. For example, would federal funds the state distributes count under the freeze, she said.

“There’s a little bit of uncertainty and definitely a level of uneasiness, almost to the point of fear,” Mitchell said.

Tuesday morning was filled with a “lack of clarity and uncertainty” at Meals on Wheels Northwest Indiana as information came in about a federal funding freeze, said CEO Ryan Elinkowski.

“We had some board members express concern. Some of the clients that we serve were also calling in. The just not knowing, the unknown, it was a challenging day,” Elinkowski said.

President Donald Trump’s budget office on Wednesday revoked a memo freezing spending on federal grants less than two days after it sparked widespread confusion and legal challenges across the country.

The Monday evening memo from the White House Office of Management and Budget sparked uncertainty over a crucial financial lifeline for states, schools and organizations that rely on trillions of dollars from Washington and left the White House scrambling to explain what would and wouldn’t be subject to a pause in funding.

The White House confirmed that OMB pulled the memo Wednesday in a two-sentence notice sent to agencies and departments, but said that Trump’s underlying executive orders targeting federal spending in areas like diversity, equity and inclusion and climate change, remained in place.

Administration officials said the notice to halt loans and grants was necessary to conduct a review to ensure that spending complies with Trump’s recent blitz of executive orders. Agencies had been directed to answer a series of yes or no questions on each federal program by Feb. 7. The questions included “does this program promote gender ideology?” and “does this program promote or support in any way abortion?”

Still, the vaguely worded memo, combined with incomplete answers from the White House throughout the day, left lawmakers, public officials and average Americans struggling to figure out what programs would be affected by the pause. Even temporary interruptions in funding could cause layoffs or delays in public services.

Continued

Researchers Concerned About Trump Pause On Grant Reviews

By Teresa Watanabe, Susanne Rust, Jaweed Kaleem and Corinne Purtill, Los Angeles Times via Disability Scoop, January 28, 2025

Leaders of the University of California, the nation’s top higher education recipient of federal research funding, are raising questions and voicing concerns about the ramifications of a temporary Trump administration pause on research grant reviews announced last week.

The administration abruptly canceled some National Institutes of Health study sessions and advisory council meetings, where scientific experts gather to assess grant proposals before funding recommendations are finalized. The NIH is the largest funder of UC federal research, providing $2.6 billion in 2023-24 — 62% of the university’s federal awards that year.

The federal funds power UC’s vast research enterprise involving more than 10,000 grants addressing infectious disease, brain injury, vaccinations, Alzheimer’s and other scientific and medical fields.

UC leaders are trying to assess the impact of the grant review pause, which stemmed from orders to halt communications, travel and public activities by the U.S. Department of Health and Human Services, Centers for Disease Control and Prevention and the Food and Drug Administration.

It is standard practice for new presidential administrations to temporarily pause some agency operations while they review them; a Jan. 21 directive from the Department of Health and Human Services noted it was “consistent with precedent” and would last through Feb. 1.

Harold R. Collard, UC San Francisco vice chancellor for research, told his faculty he expected “a return to normal operations soon.” “This is not unprecedented, and we believe it is intended to allow time for the new administration to position its leadership,” Collard wrote.

But should the pause by the world’s biggest funder of biomedical research continue weeks or months beyond Feb. 1, researchers fear it could bring potentially life-changing work to a halt.

A senior UC leader said the Trump actions have triggered anxieties across the university system’s 10 campuses, six academic medical centers and 20 health professional schools.

Continued

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