What’s behind the vanishing safety net for families with disabled children
Tara Miller and her husband spent the first four years of their daughter Ariana’s life sleep-deprived. Severely. Born in 2019 with Apert Syndrome, a rare genetic disorder that causes premature fusing of the skull bones in utero, Ariana came home from the hospital with a tracheostomy (trach), feeding tube and pulse oximeter.
At night, the pulse oximeter sounded roughly every 15 to 20 minutes.
“When you’re dead asleep, and an alarm goes off, your body goes into a state of emergency, whether it really is an emergency or not,” Miller told Straight Arrow.
Because of Ariana’s medical needs, the family qualified for 20 to 30 hours of weekly “respite care” — short-term support for caregivers — through Arizona’s long-term care program.
The hours were meant to allow Ariana’s primary caretakers to rest, work or manage daily life. But like many families, the Millers found the support difficult to access.
Desperate for sleep, Miller requested overnight nursing care. Due to a nursing shortage, she said the request was never fulfilled. Instead, four years later, the Millers were finally connected with a “night nurse,” who came every Friday from 6 p.m. to 10 p.m. That lasted a few months.
And that’s typical: Across the country, families say securing respite care is becoming increasingly difficult. Low wages and workforce shortages mean many programs are understaffed, leaving families unable to access services they are qualified to receive.
There’s an alarming shortage of the direct support workforce, Kim Musheno, Senior Director of Medicaid Policy at The Arc of the United States, told Straight Arrow.
“If no provider agency has staff available, or if wages are too low to recruit and retain workers, those hours are effectively meaningless,” she said.
A 2025 Caregiving in the U.S. report found that 75% of families who qualified for respite services inconsistently received them, while nearly four in 10 family caregivers said that it’s their greatest service need.
Advocates warn the situation could worsen as states brace for potential Medicaid reductions tied to federal budget changes, further straining an already shaky system.
Even when care exists, it’s hard to navigate the system
Today, roughly 63 million American adults — or one in four — provide caregiving support to adults or children with a medical condition or disability, according to the same 2025 report. Collectively, family caregivers provide an estimated $1 trillion in unpaid care each year.
For many families, navigating the system creates one more overwhelming burden to wrangle.
Sarah Blunkosky’s daughter Josie, now 20, was born with Down syndrome and autism, along with several medical conditions. But Blunkosky said a hospital worker incorrectly told her family they did not qualify for disability services because of their income. The family didn’t learn otherwise until Josie was 4 years old.
“That mistake delayed my daughter’s accessing a lot of her disability-based resources for several years,” Blunkosky said.
Misinformation, long wait lists and paperwork combined to create barriers for her already stretched-thin family.
It was exhausting, a sentiment Miller shared.
“When you’re sleep deprived and exhausted and already having to navigate a lot of things, it’s really hard to add more on your plate and call back this doctor or call back this respite person,” Miller said. “It’s like you almost just resort to, ‘I’ll do it myself, whatever.’”
From institutions to home-based community care
For much of American history, children and adults with developmental disabilities were routinely institutionalized, often in overcrowded facilities later criticized for inhumane conditions, including forced sterilizations, neglect and malnutrition.
Public pressure and disability rights activism in the 1960s and 1970s helped shift care toward community integration and independent living when possible.
“Disabled children should be in schools, or should be in churches. They should be playing in the neighborhood. They should be going to all the public events,” said Blunkosky, who is also a Virginia historian.
Today, many respite and caregiving programs are funded through Medicaid home and community-based service waivers, which provide care on a case-by-case basis to help people with disabilities remain in their homes and communities.
Home-based care costs less than inpatient care. One study analyzed records of more than 28,000 children with autism and found that for every $1,000 states spent on respite care services in 60 days, hospitalizations dropped by 8%.
When a program in Alabama offered 1,673 families short breaks from caring for children with special needs and medical conditions around-the-clock, 74% of caretakers reported reduced stress and an increased understanding of child development.
That had major fiscal implications: The average cost to taxpayers of a neglected or abused child is $175,344.
The program’s average cost?
$47.
States can change caregiving hours, sometimes with little notice
But unlike institutional care, home- and community-based services (HCBS) are optional under Medicaid. States can “limit the number of people served, create waiting lists, restrict hours, or narrow eligibility even when the need is clear,” said Musheno.
Families who spoke with Straight Arrow said federal cuts of the One Big Beautiful Bill, which includes $911 billion in Medicaid cuts over the next several years, will directly impact their states’ HCBS services.
Blunkosky believes that Virginia recently slashed Josie’s home care hours from 35 care attendant hours a week to 14 due to these looming cuts as there was no other “explanation of the medical necessity reasons for this,” she said.
Virginia’s Medicaid program declined to comment, but The Center for American Progress has this to say about the Big Beautiful Bill: “Research shows that when federal funding for Medicaid decreases, states tend to cut optional benefits such as home- and community-based first.”
After filing an appeal, the state increased Josie’s hours to 17.5 per week — about half of what she used to receive.
Miller also received a letter informing her that Arizona was restructuring its caregiver assessments. Ariana currently qualifies for 50 caregiver hours a week — hours Miller largely provides herself or fills in with friends and family. She fears these hours may disappear entirely in September.
Without support, primary caretakers may be forced out of the workforce, increasing the risk of housing instability, food insecurity and family crisis, said Kara Kushnir, a family therapist who is also a sibling to a disabled adult and a former policy chair for the New Jersey Council on Developmental Disabilities.
Blunkosky worries the cuts will push families back toward relying on institutions, which would mean shorter life spans and heightened exposure to diseases for the disabled population.
“There’s going to be a real economic impact by this, in my opinion,” Kushnir said. “I think people in our country don’t understand that Medicaid is not just for the poor. It is significant for the disabled.”
Respite care is not a sustainable profession
Respite care workers are often expected to perform physically and emotionally demanding work for relatively low pay. According to Care.com, the salary range across states is $15.63 to $24.67 per hour.
“Depending on the client’s needs, you could be having to lift a client into their bed, attend to a client’s toileting needs, feed a client, or manage aggressive, self-injurious or other challenging behaviors,” said Karen Sheridan, a clinical psychologist and owner of Access Autism Testing & Consultation. “These workers do not make a high wage for strenuous work.”
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“People want valued, meaningful work. They do not want dead-end jobs,” Sheridan told Straight Arrow.
And parents like Blunkosky worry that as their children’s hours are cut, the job will become even less appealing.
“I can’t just offer this as a part-time job to a teenager,” said Blunkosky, who lives in Virginia, where caretakers must be at least 18 years old.
The strain also takes a significant toll on caregivers
One in five caregivers rate their health as fair or poor, and nearly half say they are financially affected by their caretaking duties, according to the Caregiving in the U.S. report. Among those who work, half also said it impacts their jobs.
In addition, the Centers for Disease Control and Prevention reports that caregivers are more likely to suffer from mental distress, obesity and other chronic health conditions.
Cortisol levels of parents who have children with disabilities are similar to those of veterans with PTSD, said Kushnir. And, she added, these parents’ needs often go to the wayside as they focus their time and energy caring for their children.
Ariana is now 7. She had her trach removed a few months ago. But Miller said her own body is still in fight-or-flight mode. With Ariana’s caregiving hours in jeopardy, Miller said she doesn’t see things improving anytime soon.
Round out your reading
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Ella Rae Greene, Editor In Chief
