August 29, 2025

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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.

Personal Stories

VOR is about families. Families like yours. Families like mine. Every family's story is unique. And every one of our families have shared paths, hopes, challenges, moments of doubt and moments of joy.

Personal stories are the lifeblood of advocacy.

We would like to invite our readers to share their stories with us, that we may share them with our community.

Many of our Board members and long-time members have shared their stories several times over the years. We would like to hear from people who haven't spoken. In the next few months, we hope to share your stories in different formats, from our print newsletter The VOR Voice to our annual fundraising appeals.

Please share your story with us, at info@vor.net or at hdwyervor@gmail.com

CMS Phasing Out Medicaid Workforce Initiatives

Section 1115 Waiver Watch

By Amaya Diana and Elizabeth Hinton, KFF, Auaust 25, 2025

On July 11, the Centers for Medicare and Medicaid Services (CMS) released a letter to states notifying them that going forward CMS does not anticipate approving new 1115 demonstration workforce initiatives or extending existing waivers. This is the latest action by the second Trump administration reversing major Biden administration waiver priorities. 1115 waivers generally reflect priorities identified by states as well as changing priorities from one presidential administration to another.

Gaps in access to certain providers (e.g., psychiatrists, primary care providers, dentists, and long-term care providers) have been ongoing challenges in Medicaid. Access gaps may reflect system-wide problems, but may be exacerbated by provider shortages in low-income communities, Medicaid’s lower physician payment rates, and lower Medicaid physician participation compared with private insurance. State strategies to address workforce shortages can include increasing rates, reducing provider administrative burden, extending the workforce, and incentivizing participation (such as through student loan repayment or retention bonuses). Improving coverage and access was a strategic priority for the Biden administration, as was strengthening the mental health workforce. Section 1115 waivers have been used as a strategy to invest in the Medicaid workforce and help address provider shortages. Changes to 1115 waiver policy and broader federal Medicaid spending reductions may limit states’ abilities to pursue initiatives investing in the Medicaid workforce, as well as cause states to take actions such as reducing Medicaid provider payment rates that could increase gaps in access. 

Since June 2022, five states (California, Massachusetts, New York, North Carolina, and Vermont) have received approval for waivers that invest in the Medicaid workforce. Some states had used 1115 waivers prior to 2022 to expand workforce capacity, most notably through Delivery System Reform Incentive Payment (DSRIP) waivers. Approved workforce initiatives since 2022 have been focused on investments in qualified providers who make multi-year commitments to working with a patient panel with a minimum percentage of Medicaid and/or uninsured patients. These initiatives include: student loan repayment programs for qualified providers (e.g., registered nurses, nurse practitioners, physician assistants, psychiatrists), recruitment and retention bonuses, training programs, and payments to support additional residency slots. The workforce initiatives primarily target providers working in behavioral health, primary care, and long-term care.

In its recent letter, CMS said it would not approve 1115 workforce initiatives going forward. Currently approved waivers will be allowed to “run their course,” but CMS does not anticipate extending the workforce initiatives when the waivers are due for renewal. Most of the approved workforce waivers are set to expire in 2027, although California and North Carolina’s waivers are not due to expire until 2029 (Table 1). CMS is also unlikely to approve requests for new workforce initiatives, such as Florida’s May 2025 request for federal matching funds for workforce training and loan repayment programs for doctors, nurses, physician assistants, dentists, dental hygienists, and mental health practitioners who serve Medicaid recipients in medically underserved areas. In the letter phasing out workforce authority, CMS said it is prioritizing “actions that demonstrate clear health benefits, cost savings, and strong accountability for federal spending.”

This CMS guidance is the latest action by the Trump administration undoing Biden administration 1115 waiver policies. CMS also announced in July that it does not anticipate extending existing or approving new section 1115 continuous eligibility waivers for adults or children enrolled in Medicaid coverage.Previous actions from the Trump administration earlier this year also signaled efforts to curtail waivers related to social determinants of health (which also included efforts to bolster access and increase provider payment rates) and to limit waiver financing tools and flexibility. Section 1115 priorities often change from one presidential administration to another; the current administration has not yet enumerated its priorities for 1115 waiver policy.

Read the full article here

Rural communities prepare for Medicaid cuts to hit hospitals

By Sarah D. Wire, USA Today, August 27, 2025

Rural Americans historically rely on Medicaid more than people in densely populated areas. And rural health care providers and facilities often need Medicaid reimbursements to stay open.

Advocacy groups estimate that 700 rural hospitals ‒ about one in three ‒ as well as many rural clinics and nursing homes are at risk of closing in the next few years. An estimate from KFF predicted the cuts to federal Medicaid spending approved in the new law would exceed $155 billion in rural areas over the next 10 years.

A majority of these at-risk hospitals and clinics are in Republican-held House districts, according to a map created by the advocacy group Protect Our Care.

Cuts to Medicaid and SNAP won't fully take effect until after the 2026 midterm elections, but health care systems often budget a year, or even two years into the future and closures have already begun.

In southwest Nebraska, McCook-based Community Hospital said the day before Trump signed the bill into law that it would shut down its clinic in Curtis, a town of about 900, citing financial challenges, including the incoming Medicaid cuts.

Hospitals are also weighing whether more people will choose to go without health insurance when some premiums spike this fall.

The law ends the Obama-era Affordable Care Act’s enhanced premium tax credits, meaning the 24 million people who get insurance through the Affordable Care Act's marketplace will almost certainly see a spike in costs.

"There are lots of hospitals in rural and low-income areas that have been operating at very slim margins for a long time, and they are looking at a coming health care cataclysm that begins this year," said Connecticut Sen. Chris Murphy, a Democrat.

An analysis of hospital's financial vulnerability done by the Cecil G. Sheps Center for Health Services Research at the University of North Carolina identified hundreds of hospitals across the country that could close, with the biggest number in Kentucky, Louisiana and California.

On Aug. 7, Providence health system announced plans to close clinics, therapy and rehabilitation programs across two counties in Washington State, citing "multiple pressures," including state and federal Medicare and Medicaid cuts and higher costs due to inflation and tariffs.

"These headwinds will only intensify when the cuts to vital safety-net programs that were included in the recently passed HR1, also known as the One Beautiful Bill Act, go into effect," the health care system said in a statement.

Continued

FACT FOCUS: Rural hospitals are expected to lose money from Trump’s bill, despite RFK Jr.'s promise

By Amanda Seitz, Associated Press, August 27, 2025

Rural hospitals are preparing to lose billions of dollars from President Donald Trump’s signature tax and spending cut bill signed into law this summer.

Dozens, already on the brink, have warned they face the prospect of closure or reduced services because of the bill’s cuts to Medicaid, which is funded by federal and state governments and provides health care coverage for the poorest Americans.

At a cabinet meeting Tuesday celebrating working Americans, Health and Human Services Secretary Robert F. Kennedy Jr. asserted that a historic “ infusion of cash ” is on the way for rural hospitals throughout the country.

“Right now we spend 7% of Medicaid dollars on rural hospitals,” he said. “They’re getting the short end of the stick.” To address that, he said a new fund — established in the legislation — will give rural hospitals an extra $10 billion every year.

Here’s a look at the facts.

THE CLAIM: “Under the rural transformation program, we give them an extra $10 billion a year. We’re raising an infusion of cash, rural hospitals and rural communities, by 50%. It’s going to be the biggest infusion in history and it’s going to restore and revitalize these communities.” 

THE FACTS: There’s more to that nearly 900-page bill than Kennedy let on at the White House.

It’s true that Republicans established a new fund that will set aside $10 billion every year for rural hospitals, providers and clinics. But they did that to offset significant cuts that rural hospitals are expected to endure as a result of the legislation, which also slashes $1.2 trillion from the federal budget over the next decade, primarily from Medicaid.

Roughly 10 million people are expected to lose health insurance from the legislation. Most people will lose Medicaid.

That will leave many hospitals with patients who can’t afford to pay for emergency services. The changes are expected to hit rural areas, where as many as 1 in 4 Americans rely on Medicaid to pay for health insurance, particularly hard.

Estimates have suggested that rural hospitals, in particular, could lose between $58 billion and $137 billion over the next decade because of the bill’s provisions. As many as 300 rural hospitals were at risk for closure because of the GOP’s bill, according to an analysis by The Cecil G. Sheps Center for Health Services Research at the University of North Carolina at Chapel Hill.

Then there’s the matter of how hospitals will actually access the funds. Half of the $50 billion will be divided equally among all states. The other half will be divided based on a formula, developed by the Centers for Medicare and Medicaid Services, that examines a state’s rural population and the number of low-income people it serves.

Dividing some of the funds equally among states, however, will ultimately give some states, even those that have few rural hospitals, the same amount of money as those states that have a significant number of rural hospitals.

“They all have needs, but at least half of the funds are going to be distributed equally, which doesn’t make sense,” McBride said. “Some states don’t have very many, and others have a lot.”

A spokesperson for Kennedy did not respond to a request for comment. 

Read the full article here

While this article covers only one state, West Virginia, the outline of what to expect in WV's implementation of the Medicaid cuts passed in Public Law 119–21-July 4, 2025 (also known as H.R.1 or the OBBBA) is a good measure of what other states may expect after the Mid-term elections next year.

Nearly 55,000 West Virginians are set to lose Medicaid. Here’s what to expect, and when. 

By Erin Beck, Mountain State Spotlight, August 27, 2025

Nearly 55,000 West Virginians will lose Medicaid health insurance over the next decade, according to an estimate by KFF, a health analysis and news nonprofit.

Congress passed the “Big Beautiful Bill” last month, but your ability to get treatment won’t end right away. People will lose care more gradually – here is how and when the changes are expected to affect you.

Just over 500,000 state residents have Medicaid as of this month, according to the state Department of Human Services. One in ten West Virginians who receive Medicaid is likely to lose coverage over the next decade.

How did the new law change Medicaid?

Congress made the biggest cuts to Medicaid in two ways.

Medicaid is a matching government program, meaning it’s partially funded by the state and partially by the federal government. 

When President Donald Trump signed the bill into law last month, the federal government restricted how much it will give states for Medicaid.

As states receive less money, they will be forced to stop paying for some of your care.

In addition, the law requires you to prove that you are working to qualify for Medicaid based on income. 

Medicaid historically covered people for reasons like old age, illness or pregnancy. In 2014, officials expanded the programs to cover people based on income alone.

In West Virginia, about one third of Medicaid recipients, 165,000 people, are covered because they’re considered low-income.

Kelly Allen, executive director of the West Virginia Center on Budget and Policy, noted state health officials will ultimately determine how you’ll demonstrate you’re eligible, such as by providing a W2 or paystub. 

You could lose coverage if you are working but aren’t able to prove it.

The law states that you don’t have to meet this work requirement if you’re:

• caring for kids 13 and under or for disabled family members
• pregnant or receiving postpartum Medicaid coverage
• disabled
• medically frail
• have a substance use disorder
• have a disabling mental disorder or serious and complex medical condition
• a former foster youth
• 
  

But you could lose coverage if you can’t prove you meet those exceptions, and states are given discretion to refine the definitions of terms like “medically frail” and “complex medical conditions.”

“We don’t know what that’s going to look like yet, whether that’s a doctor’s visit, a doctor’s note, or proof of being in regular treatment,” Allen said. 

Continued

How Will the 2025 Reconciliation Law Affect the Uninsured Rate in Each State?

Authors: Alice Burns, Jared Ortaliza, Justin Lo, Matthew Rae, and Cynthia Cox, KFF, August 20, 2025

Read the article here

Related Articles:

KFF’s Projections of Medicaid enrollment and spending in FY 2024 and over the 10-year period.

KFF’s 5 Key Facts about Medicaid and Provider Taxes

KFF’s 2024 Budget Survey, Provider Rates and Taxes

KFF’s Which States Might Have to Reduce Provider Taxes Under the Senate Reconciliation Bill?

RFK Jr. Is Getting Personal Authority Over Who to Kick Off Medicaid

By Julia Metraux, Mother Jones, August 25, 2025

Freddie Elmore hasn’t worked for around 20 years. Now, he’s trying to figure out how, and if, he can return to the workforce—not because he thinks he can do so while managing his health, but because he is concerned that he will lose Medicaid.

To retain Medicaid coverage, Elmore, who lives with disorders including central pain syndrome and Long Covid, may soon have to work at least 80 hours a month—while caring for his autistic son 49 hours a week, commitments he’s afraid he won’t be medically able to juggle—unless he’s able to win exemptions on terms expected to be set almost entirely by Health and Human Services Secretary Robert F. Kennedy Jr.

In July, Congress passed President Trump’s budget bill, which funds sweeping tax cuts for the wealthiest Americans through an estimated $911 billion in planned cuts to Medicaid, and in particular by establishing requirements that would force most Medicaid users to work at least 80 hours per month in order to stay on its rolls.

The ethos behind Kennedy’s Make America Healthy Again movement blames individual people for their chronic diseases—particularly by associating health conditions with choices like vaccination—and links Medicaid users’ value to their economic productivity, as when Trump’s Agriculture Secretary, Brooke Rollins, said in early July that able-bodied people on Medicaid should replace deported migrant farm workers.

Now, Kennedy will have almost total, personal authority over his department’s definition of who is “medically frail” and who has “special medical needs,” definitions that will play a central role in determining who is actually able to get exemptions from Medicaid work requirements—and how Medicaid users will be screened.

There are multiple ways disabled people could lose Medicaid coverage when work requirements hit, says David Machledt, a senior policy analyst with the nonprofit National Health Law Program. “Sometimes, it may be the definition being too narrow to capture people who have real barriers to employment,” he said. “There’s also just as likely going to be bumps from and coverage loss that comes…when the state sets up a verification regime.”

A person with debilitating chronic pain, or a serious autoimmune illness, may appear “able-bodied” by the standards RFK Jr. appears poised to implement—even as they face hurdles in qualifying for Social Security disability due to not being considered disabled enough. HHS declined to answer a series of questions for this article, instead offering a general statement that the agency “remains committed to protecting and strengthening Medicaid for those who rely on it…while eliminating waste, fraud, and abuse.” 

Continued

Trump, RFK Jr. Promise Big Autism ‘Announcements’

By Michelle Diament, Disability Scoop, August 27, 2025

U.S. Secretary of Health and Human Services Robert F. Kennedy Jr. told President Donald Trump that his agency will have information about what’s causing autism within weeks.

“We’re finding interventions, certain interventions now that are clearly almost certainly causing autism and we’re gonna be able to address those in September,” Kennedy said during a cabinet meeting Tuesday.

In April, the health secretary committed to “know what has caused the autism epidemic” by September. He later softened his stance, saying instead that “we expect to begin to have answers” by that point and that his agency would be initiating studies to identify environmental toxins responsible for autism.

During the Tuesday meeting, Trump called autism “such a tremendous horror show” and asked Kennedy about how autism rates have grown in recent decades.

“There’s something wrong when you see the kind of numbers that you have today versus 20 years ago,” Trump said. “So there has to be something artificially causing this, meaning a drug or something, and I know you’re looking very strongly at different things and I hope you can come out with that as soon as possible.”

“We will,” Kennedy responded.

Trump insisted that it will be a “big day” when the forthcoming announcements are made.

“I think we maybe know the reason, and I look forward to that press conference to be with you in that press conference. That’s going to be a great thing,” Trump told Kennedy.

The expedited federal effort to uncover what’s behind the increase in autism has been met with skepticism by many long-time researchers and advocates, particularly given that Kennedy spent years promoting a link between autism and vaccines despite numerous studies discrediting that theory.

Dr. Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University, who’s leading the Coalition of Autism Scientists, a group of more than 300 researchers in the field, said she suspects that Kennedy’s announcements will have something to do with vaccines or fluoride, both of which have previously been targeted by David Geier, a vaccine critic who Kennedy hired at HHS.

“Of great concern is the fact that this is not the way one reports potentially explosive findings to the public as the president and secretary did today and are planning to next month,” Tager-Flusberg said.

Rather, she said that researchers go through a peer-review process and publish their findings in a reputable journal with documentation so that their study can be replicated.

“Press conferences presented by a non-scientist — Kennedy — and attended by the president are a way to sensationalize the findings and raise alarm in the public,” Tager-Flusberg said. “This is not science.”

Read the full article here

What Really Causes Autism and What We Should Do About It

By Robert Klitzman, The Hastings Center for Bioethics, August 26, 2025

I recently met Billy, a 12-year-old boy with severe autism. He had been growing well but, at around age 3, he became increasingly delayed in speaking and walking. As he got older, he would frequently scream unconsolably when upset. and have temper tantrums and meltdowns, spilling and throwing food all around him, and difficulty understanding spoken language or learning. Eventually, testing showed that he had an IQ of 70—in the category of intellectual disability. 

To determine the cause of his difficulties, his parents entered a study, through which I met him. As part of the study Billy and his parents underwent genetic testing, which revealed that he had a new, or “de novo,” mutation that neither of his parents possessed, an error in the “cutting and pasting” of his DNA. As an embryo rapidly copies DNA, creating billions of cells to form an infant, mistakes occasionally get made. We each have about 1,000 such errors. The vast majority have no effect. But sometimes they do, causing various conditions, including autism. About 20% of autism cases, including Billy’s, result from a de novo genetic variation. 

Recently, given Robert F. Kennedy, Jr.’s attacks on vaccines as the cause of autism, I have been thinking about Billy. Kennedy’s assaults, dissuading Americans from getting immunizations, are already causing outbreaks of measles and will soon likely spread otherwise preventable diseases, including polio and influenza, potentially killing thousands of Americans. 

His critics have focused on why he shouldn’t attack vaccines, but crucial questions also arise about what does in fact cause autism and how to prevent and address it.

Autism spectrum disorder affects 1 in 31 eight-year-olds in the United States, and has been increasing for reasons that are not entirely clear. The theory that vaccines cause autism has, in fact, long been  disproven. The only study that purported to support this theory was completely fabricated—the author claimed that 50% of children developed autism after getting vaccines, when in fact none of these children did so.

Instead, autism has been rising in large part due to better detection and expanded criteria for diagnosing it. Diagnosis also varies among socioeconomic groups (ranging from 1 in 103 in certain areas in Texas to around 1 in 19 in California), with much higher prevalence in wealthy than in poor families, and in white  than Black families. There is no reason to think, however, that wealthy white people in fact are more likely to have autism than poorer Black individuals. Instead, the rates vary due to different rates of screening and detection. We are also now defining the condition far more broadly. Millions of children who had previously been diagnosed with intellectual disabilities are now considered autistic as well.

Environmental factors also play roles, including a mother’s obesity, older age, diabetes caused by pregnancy, polycystic ovary syndrome, and exposures to various pesticides and infections.

Genetic variations have not been identified for all autistic people—the science is still new. But the fact that numerous people have them should encourage us to continue to fund research seeking the causes, and potential medical or psychosocial interventions and services for people who may want them.

Unfortunately, while the Trump administration, through Kennedy, seeks to reduce autism with attacks on vaccines and intentions to reduce certain ingredients in food, the administration is also eliminating vital research at the Environmental Protection Agency, the National Institutes of Health, and the Centers for Disease Control and Prevention to discover the actual causes of autism and how to address them.

If our goal is indeed to decrease suffering from autism, we need to rely on facts, not assumptions and ideologies, and heighten efforts in schools and clinics to identify autistic children, especially those who are poorer and not white, to provide appropriate services for them. Yet, the Trump administration has gutted the Department of Education, which could lead, coordinate, and oversee such programs.

Read the full article here

Parents of N.J. kids in special ed classes just won a major battle to fix ‘broken’ system

By Liz Rosenberg, NJ Advance Media, August 26, 2025

Families of children in special education classes scored a big win in court this month after New Jersey officials agreed to better uphold the rights of parents battling public school districts over their kids’ educations, advocates say.

After a lengthy court battle, three families who said they encountered many flaws in the state’s special education law system agreed to a settlement with the New Jersey Department of Education and the Office of Administrative Law.

The 22-page settlement approved Aug. 14 in federal court clarifies the system New Jersey families can use to dispute how children receiving special education services are being educated. That includes parents battling school officials over their kids’ special education class placements and IEPs, or Individualized Education Programs.

The settlement says the state and administrative law judges must handle cases the way they were “supposed to be handled under the law — all along,” said Robert Thurston, the attorney representing the three families who filed the lawsuit.

“‘You just have to enforce the law the way it’s written,’” he said of the settlement’s primary message.

The key elements of the settlement and the judge’s consent order include:

• The “stay put” rule — which says students must be left in their current special education program or placement until a family’s dispute with a school is resolved — must be treated like a court order.
• State administrative law judges and mediators, who handle disputes between schools and students’ families, must adhere more closely to the rules that protect the rights of parents and kids with disabilities. That includes rules about pre-hearing conferences, mediation, access to student records and a 45-day time limit for most cases to be resolved.
• All mediators and administrative law judges must receive proper training and education on federal laws and regulations before handling special education cases.
• Families who believe their rights are being violated can file form through the state Department of Education or on the settlement website.

Officials from the state Department of Education and state Office of Administrative Law declined to comment on the settlement.

The case began when Thurston filed a nearly 100-page complaint on behalf parents who said the state’s special education legal system has long failed families.

The original plaintiff in the case was 11 years old when her school changed her Individualized Education Program, known as an IEP, without her parents’ input, the lawsuit said.

When the parents learned the school had lowered the bar for the child’s learning goals, they filed a due process complaint in court.

Over the course of several years, the girl’s parents filed three other due process complaints as they tried to make sure their child, who is autistic and has an auditory processing disorder, was given an appropriate learning plan, their attorney said.

Four different state administrative law judges were assigned to the girl’s cases and several rules and procedures were violated over the years, Thurston said.

The due process system for special education students has “been broken for decades and, unfortunately, the families in New Jersey have really suffered,” Thurston said.

Two other plaintiffs joined the case, including a student who was denied special education services entirely in a “completely wrong” decision, Thurston said.

The three families agreed when Thurston asked if they were willing to battle in court to solve some of the larger problems with the state’s system, he said.

“They said, ‘Absolutely, we’re happy to do that,’” he said.

Advocates for students with disabilities said the settlement will have an impact on families in disputes with their schools over special education services.

“It’s certainly a win for families,” said Peg Kinsell, director of public policy at SPAN Parent Advocacy Network, an organization that supports families of students in special education and the staff that work with them.

Continued

Read the settlement here

About 200 students with disabilities in Chicago don’t have classroom placements as second week of school begins

By Samantha Smylie, Chalkbeat, August 26, 2025

About 200 students with disabilities are still waiting for Chicago Public Schools to place them into a classroom that fits their needs, as schools head into the second week of class.

Although CPS added nearly 100 new cluster programs in the past two years with classes exclusively for students with disabilities, families were notified in an Aug. 15 letter that there are “limited seats available.”

District officials said the delay is not impacting all special education programs, just students slated for placements in cluster programs.

Cluster classrooms are only for students with disabilities and serve up to 10 students in early childhood education programs and 13 students from kindergarten up until a student ages out of the school district at 22, according to district officials.

After the latest expansion, CPS now operates about 775 cluster programs. The district said it added 69 programs in 2024 and another 32 programs in 2025. CPS also restructured its special education department over the summer. 

If a student with an Individualized Education Program does not receive a placement within 10 days of the first day of school or the date their IEP is finalized, parents should receive a letter from their case manager or the Office for Students with Disabilities. The letter informs parents which services in the student’s IEP haven’t started, the actions the school is taking to support the student, and how parents can request compensatory services — additional services to make up for lost services written into an IEP.

Miriam Bhimani, a special education advocate and parent, said this isn’t a new problem for the district.

“It seems to continue a trend where CPS is not serving students with disabilities and is excluding them from the public institution,” said Bhimani. “If you don’t have a school placement, you’re not going to school.”

Barb Cohen, a policy analyst at the advocacy organization Legal Council for Health Justice, said a larger question is whether students are being appropriately placed in cluster programs.

“However, that doesn’t change the fact that their IEP teams decided cluster was the right placement and the district needs to follow the law,” Cohen said. “The law says you need to follow the IEP team’s recommendations.”

CPS serves about 54,000 students with disabilities, who make up about 16% of the student population. Around 8,300 students were recommended for cluster programs for the 2025-26 school year, according to district officials. 

Read the full article here

‘These aren’t minimum wage jobs’: Workers who help Delawareans with disabilities struggle amid low pay

By Johnny Perez-Gonzalez, WHYY. August 28, 2025

Angela Hendrickson spends her days helping Delawareans with disabilities live fuller lives — coaching them on the job, taking them grocery shopping or monitoring their health needs. But when her shift ends, she returns with her two children to a motel room she can barely afford.

“I’m currently living in a motel that is the cheapest motel that I could find. So it’s not in a very safe area. Me and my children, we have to share a room. Granted, there’s two separate beds, but none of us can have any privacy or our own personal space right now,” she said.

Hendrickson has worked as a direct support professional, or DSP, at Autism Delaware’s POW&R program for more than two years. She said the most rewarding part of the job is helping people feel productive and included in society.

“It’s a very fulfilling job knowing that I am the reason that particular day that they get to have a more fulfilling life rather than just sitting in a group home or being cared for by their parents that may be older or just burnt out from having to care for people with different levels of special needs,” she said.     

What DSPs do — and why they matter

The role of a DSP stretches far beyond caregiving. On any given day, Hendrickson supports adults with intellectual and developmental disabilities on job sites, helps them manage diabetes or seizures and steps in during emergencies.

“One of our individuals has epilepsy. On two different occasions, I have had to address him in a seizure episode and know what to do until higher care could arrive,” she said. “There’s one of our individuals that has high diabetic needs and we need to monitor their blood sugar very frequently and know when to adjust calorie intake or get some exercise and some water to bring those levels down.”

Verna Hensley, vice president of public affairs at Easterseals Delaware and Maryland’s Eastern Shore, said DSPs are a critical link for the 500 adults her organization serves.

“It’s not just a caregiving role. It’s not just a babysitting role. A direct support professional is helping them learn how to do things for themselves,” Hensley said. “One of the misperceptions is the fact that DSPs, it’s just a minimum labor type of job and it’s nowhere near that.”

She noted that DSPs are trained to respond when medical needs arise, while also teaching the individuals they support essential life skills and problem-solving abilities.     

Wages and turnover

Despite the responsibilities, DSPs are paid close to minimum wage. In Delaware, the state reimbursement rate for DSP wages is $15 an hour. Most providers pay slightly more — around $17 to $18 an hour — but it’s still less than what some retail or warehouse jobs may offer.

“These aren’t minimum wage jobs,” Hensley said. “They need health benefits … they need all of their benefits, covering the costs of their [paid time off] and all kinds of employment expenses.”

Hendrickson earns less than many entry-level health care workers, despite being trained to administer medications and respond to health crises.

“Some of our participants have some medical needs, some more severe than others, and we have to be prepared to handle any medical situation that may arise,” Hendrickson said. “I don’t feel that we get recognized appropriately as medical professionals.”

A 2023 national workforce study confirmed the strain providers are facing. In Delaware, the turnover rate among direct support professionals was nearly 40%, with some agencies reporting vacancy rates of 10% for full-time positions and 20% for part-time roles.

At Easterseals Delaware and Maryland’s Eastern Shore, Hensley said turnover remains around 30%. Despite efforts to recruit and retain staff, she acknowledged there is still a long way to go — and the instability continues to disrupt care for the people who rely on it.

“It’s very difficult when your reimbursements are not covering the full cost of the care,” she said. “People with disabilities are like anybody else, right? They’re going to thrive and be more successful if there’s stability in their life and that includes having a stable direct support professional every day.”

The state’s response

Delaware is not alone in its workforce struggles, said Jody Roberts, director of the Division of Developmental Disability Services.

“While there has been some rebounding since the end of the pandemic that the ability for individuals who are eligible to receive services from DDDS, the Division of Developmental Disability Services, is certainly in a situation where our service need and our service growth is significantly hampered by our ability to grow that direct support professional workforce,” he said.

He pointed to the McNesby Act, which required Delaware to update its funding rates every few years based on the cost of care. A new rate study is expected to be finalized this fall, offering a fresh look at the state of the DSP workforce.

“We also know it’s not 2019 … this is 2025. So the division is wrapping up a new rate study imminently. It should be released later this fall,” he said. “We hope that this gets us back on to that regular cycle of refreshing those rates so that they are accurate reflections of the cost of doing business in the state.”

The cost of waiting

For Hendrickson, the state’s delays in increased funding and the workforce shortage aren’t abstract policy debates — they shape her daily life.

While she spends her days ensuring people with disabilities can live with dignity, her own family remains in unstable housing. Advocates warn that without stronger investment in direct support professionals, more workers will leave the field, more families will go without services and more people like Hendrickson will be left struggling in the shadows of a system that depends on them.

Read the full article here

Why I’m Glad My Brother is Intellectually Disabled

Dual Diagnoses and the Failures of the Mental Health Care System

By Diane Morrow-Kondos, Tulsa Kids, August 27, 2025

Now that the title pulled you in, let me assure you, I am not a person who says they wouldn’t change a thing about their loved one with disabilities. I would take away my brother’s disabilities in a heartbeat. Why would I want him to suffer? I love him, and I fervently wish he had an easier lot in life. So why am I glad he is intellectually disabled?

My answer is complicated. It’s estimated that between 30 and 40% of people with intellectual disabilities also have some type of mental illness. My brother is in that unfortunate category of people with dual diagnoses. David is not only intellectually disabled, but he is also schizophrenic and has obsessive-compulsive disorder. He also has a host of physical ailments, including painful scoliosis and limited vision. He was dealt a tough hand to play. If I were given the magical power to take away only one of his issues, it would be schizophrenia. Without a doubt, I’d leave the others intact and take away the schizophrenia.

Having an intellectual disability has not been easy for David or our family. He struggles with communication skills and is easily frustrated because he can comprehend considerably better than he can communicate. I often think how frustrating it must be not to be able to tell people what you want or need. I think about the experience my husband and I had when we got lost in the Tuscany countryside of Italy. It was before we all had phones with GPS, so there we were on a moped in the rain, with no idea how to get back to our hotel. We found several people and asked for directions, but no one spoke English, and we were completely hopeless with Italian. It was scary and frustrating, but it was a few hours out of my life. My brother lives in that trapped reality every day of his life.

Even as difficult as it is for David to have intellectual disabilities, schizophrenia is what has made his life exponentially more challenging. Schizophrenia causes him great emotional pain that often manifests in anger, destruction of property, and self-harm. Medications have helped immensely, but there are still times the mental illness breaks through the pharmaceuticals.

Thank you for being patient as I have meandered to my point. I am grateful that David is intellectually disabled and not only schizophrenic, because having an intellectual disability qualifies him for government assistance. The state pays for his housing, food, and medical care. Because the state pays for his care, he is able to live in a facility where nursing care is available around the clock, and let me tell you, he keeps the wonderful nurses busy. If he were only schizophrenic, there would be very little assistance or services available. I could hardly imagine where he would live or how he would fare. Our system miserably fails many people who have mental health issues.

Compliance with medications is a significant issue for people with schizophrenia. Many people will take the meds, start feeling better, assume they don’t need them anymore, and stop taking them. It becomes a vicious cycle of having a schizophrenic episode, getting back on meds and stabilizing, and then going off again. My brother doesn’t have a choice. The nurse gives him meds twice a day, and he takes them. He never questions it, as it has been a part of his life for almost forty years.

Cost is also a factor in compliance. If you can’t hold a job because of your mental illness, how do you pay for your medications? I know that if my brother hadn’t received financial aid, we wouldn’t be able to afford the level of care he receives. His medications alone would be astronomical. With one trillion dollars in Medicaid cuts now in the works, our country is a place where being poor and having health or mental health issues is a scary situation.  "

I live close to where many unhoused people congregate. I occasionally see people who exhibit some of the signs of schizophrenia that I recognize, gesturing wildly, talking to someone who isn’t there, and exhibiting erratic movements. My heart breaks for them. It’s not a far stretch to imagine it could have easily been my brother out on the streets. Without his intellectual disability, my brother would most likely be in the same position. In reality, without the care he’s received, he probably would not have survived this long.  

I wish I could wave that magic wand and erase every single one of my brother’s diagnoses, but if I could only remove one, it would be schizophrenia. Compassion and care shouldn’t be a political issue. Let us return to being a country that has compassion. Let us take care of the most vulnerable amongst us.  

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H.R.4796 - Rep. Laura Friedman (D-CA) - Restoring Essential Healthcare Act -To amend Public Law 119-21 (The One Big Beautiful Bill Act) to repeal the prohibition on making payments under the Medicaid program to certain entities.

H.R.4807 - Rep Greg Landsman (D-OH) - Protect Our Hospitals Act - To amend Public Law 119-21 to repeal certain changes to provider taxes under the Medicaid program. 

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.  

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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.

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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

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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.