Why families caring for children with disabilities are suing Washington state

Published 1:30 am Wednesday, April 22, 2026

When Jamie and Chris Thompson got married, they created a big, blended family.

Chris had three children from a previous marriage. Jamie had a son. Together, they had two more kids. The youngest, Colby, had bright blue eyes and chubby cheeks. Jamie Thompson called him the “little ham of the family.”

But in 2010, a babysitter became so frustrated with his crying that she shook and slammed him, Jamie Thompson recalls.

This left Colby, then 8 months, with a traumatic brain injury that nearly killed him.

Now 16, he can’t use his body and can’t communicate. He has severe scoliosis, chronic lung disease, cerebral palsy and is fed via tube, and is dependent on a ventilator to breathe at all times. He requires round-the-clock care.

For years, Jamie Thompson has been his caregiver, to the point that she sleeps in a recliner next to him in the living room.

“I’m employee of the month, Colby would tell you, even though he can’t,” she said. “I show up every day. I never have a sick day, I’m always here.”

When it comes to support from the state, Thompson, like many parents providing care to disabled children, falls into a gap.

Washington compensates parents providing care to disabled children on Medicaid if they are over 18, but not if they’re minors. Other relatives can get paid for taking care of children, just not parents. Professional nursing and personal care are covered, but families say labor shortages make these services often difficult to find.

This has forced some parents to quit their jobs to care for their children full-time without pay. Some fear that such little support will leave them with no other choice than to institutionalize their children.

In response, families have brought a potential class-action lawsuit against the state in federal court for not ensuring that children with developmental disabilities on Medicaid get the nursing and care services they qualify for.

“It’s really frustrating to know that the state of Washington has been taking advantage of us, all of our families, to take care of our kiddos for free, and there’s not a damn thing anybody can do about it,” Thompson said.

Legislation to potentially pay parental caregivers made some progress in the Legislature in 2024 and 2025, but went nowhere this year. The idea has bipartisan support as a way to overcome the caregiving workforce shortage, but has faltered amid budget concerns.

“We’re just going through the judiciary to do what they tried to do through the Legislature already,” said Greg Albert, an attorney for the plaintiffs bringing the litigation.

The state attorney general’s office deferred comment to the lawsuit’s defendant, the state Health Care Authority. A spokesperson for the agency, which administers Medicaid, declined to comment as the litigation is pending.

But in court filings, the state has defended its actions, arguing the plaintiffs have “received services appropriate to their factual and medical situations.”

The Health Care Authority “is complying with applicable law and continues to work with the plaintiffs to ensure the provision of services,” the state wrote in court papers. “HCA has not denied any services or failed to make efforts to find additional services.”‘You have to find a way’

Outside care for families with disabled children falls into two buckets.

Private duty nursing gives a home-based alternative to institutional care for children with complex needs, like ventilators, tracheostomies or feeding tubes.

Personal care is for outside help to aid in the daily tasks of living, like bathing, dressing, eating and managing medication, among other things.

The children whose families brought the suit qualify for a combination of private duty nursing and personal care, or both. They include a 3-year-old who has spent much of his life in the hospital and skilled care facilities because no private duty nursing services were available to enable him to live at home. Another plaintiff qualifies for 112 hours per week of private duty nursing but has been getting less than 40 hours for over a year.

The state has countered in court filings by arguing that the “alleged harm, if any, arises out of conditions of which the plaintiffs had knowledge and to which they voluntarily subjected themselves.”

The lawsuit claims roughly 100 people in Washington under age 21 who are eligible for private duty nursing services are not receiving them at the level they’re approved for. It counts about 4,700 people in the same boat for personal care aid. A state study in 2023 estimated 1.4 million personal care hours went unused by children in these circumstances.

The plaintiffs are asking a judge to allow them to represent those roughly 4,800 children in the class-action case.

Some states, the study noted, pay parents for caregiving for their own children. Many made the move during the COVID-19 pandemic, which deepened the caregiving workforce shortage, but Washington didn’t. Other states have been sued for similar issues.

The lawsuit claims the state is violating multiple federal laws by not providing the care for the allotted hours. The families say the state’s inability to build the workforce is leaving children waiting months to be discharged from hospitals or forcing them from their homes into institutional care.

“Part of it is that they just don’t pay enough to be able to find nurses to go do that,” Albert said. “But the way the federal government looks at it is that’s not good enough. You have to find a way to do it.”

In 2016, a federal judge ordered the state to provide in-home nursing as authorized, in response to a lawsuit from the families of infants and toddlers.

The latest lawsuit, filed in federal court in Tacoma in February, argues the problem persists a decade later.

The litigation isn’t trying to bring a specific outcome. The families just want a judge to order the state to do whatever necessary to fulfill the caregiving needs the families say it isn’t meeting. They aren’t seeking monetary damages.

Albert hopes by June to see a judge rule on a preliminary injunction, potentially ordering the state to take steps to improve the system.‘It’s really taxing’

Starting around 2012, the Thompsons hired a couple nurses to care for Colby. At the time, he qualified for 10 hours a day of skilled nursing. But after a couple years, both nurses had to step away from the family to care for their own families.

For years after that, the replacement nurses they brought in were hit or miss, Thompson said. The last nurse they had was in 2018.

Since then, the family hasn’t had any outside nursing help, Thompson said. Colby now is eligible for 16 hours of private duty nursing per day.

His mother is still open to having a trained nurse help out, but recognizes she is Colby’s best caregiver. Thompson said if she could change history, she still “wouldn’t ever change being his provider.”

“I have family and friends who think it’s all very sad because I’m just stuck here, but to me, it’s not being stuck,” Thompson said. “It’s frustrating that this is his right to have help. But we’ve just, with everything in our situation, we’ve had to learn to adapt and change our lifestyle so many times.”

Katie Scheid’s daughter, Millie, qualifies for 185 hours of personal care per month due to her severe cerebral palsy diagnosis. Scheid quit her job in 2021 to care for Millie.

Like Thompson, Scheid isn’t a named plaintiff in the lawsuit, but their experiences are representative of those who brought the case.

Scheid is her daughter’s primary caregiver, but she isn’t alone. Her parents care for Millie and are compensated. But they’re getting older, and so it’s getting more difficult to meet Millie’s needs.

“It’s really taxing on the whole family,” Scheid said.

She has long been frustrated that the state won’t pay parental caregivers like herself.

“That cost is apparently just too much for the state to pay,” she said, “even though those are hours they already promised, hours they already determined were needed.”