After Interval House closed, one respite provider remains in southwestern Oregon
Megan Miller knew her son needed breaks, but for a long time she did not know how to get one. Caring for her neurodivergent — or “neurospicy,” as she calls it — 8-year-old in Eugene, Oregon, left her overwhelmed and isolated. A standard childcare or after-school program would not accept a child with her son’s needs, and she had no family nearby. Her son’s Medicaid plan for people with an intellectual and developmental disability covers two weeks of “relief” overnights per year, but Miller said she had never been able to use it because the benefit covers only limited situations and there are few providers.
The strain grew when the family moved homes and schools. Miller said her son, who is absorbed in Spider-Man and imagination, became so depressed amid the changes that he was expressing thoughts of suicide. After months of trying, she found a daytime respite program in Lane County with space for him: a few hours of care on a Saturday, once a month. She said it gave her son room to be a kid with children like him, and gave her a break.
Respite is a service experts have recommended for decades. It provides short-term supervision from trained providers, giving families of children with complex behavioral health needs a break from the kind of stress that can lead to emergency room visits, caregiver burnout and, in some cases, abuse or neglect. Oregon’s system does not make that break reliably available. There is no statewide funding for youth behavioral health respite, and Oregon is one of only two U.S. states that does not mandate Medicaid coverage of it. Whether the care gets paid for is therefore largely up to the state’s regional Medicaid networks, known as coordinated care organizations.
Some networks do cover respite, but providers still struggle to finance a service that must be able to take a child with complex needs at any time. That strain has produced closures, including the shuttering of one youth respite home in Southern Oregon, Interval House, just last year after a decade in operation. Kairos NW, a nonprofit that provides youth mental health and foster care services, closed the home after Jackson Care Connect, the regional Medicaid administrator, significantly scaled back funding for the program, citing low utilization and a need to direct limited dollars elsewhere.
“(Respite) gets taken for granted,” said Sarah Hollingworth, outpatient services director at Kairos NW. People assume families can just “deal with it” without these types of services, she added, when finding appropriate care for a kid with complex behavioral health needs is not simple.
Before it closed, Interval House was one of only a few youth behavioral health respite providers offering overnight services in the state. With its closure, only one respite provider is available within the three-hour drive between the California border and the city of Eugene in southwestern Oregon. It is in Grants Pass, 140 miles south of Eugene. As a licensed behavioral rehabilitation services center, Interval was staffed with trained providers 24/7 and could accommodate up to three children at a time, each for a few days.
Jackson Care Connect covered the lion’s share of the home’s approximately $58,000 in annual operating costs and separately reimbursed for clinical services provided to children. The network cut that operational funding last year, leaving only reimbursement for each occupied bed. Jeremiah Rigsby, chief legal and public affairs officer for CareOregon, which operates Jackson Care Connect, said the network decided to rightsize the contract.
“Our specific contract with Kairos evolved as initial projections for care utilization substantially differed from the level of services that our members actually used,” Rigsby said, noting that Jackson Care Connect members still have one other respite provider available.
The explanation points to a limit on how much volume any single respite program can serve. Interval House served about 30 children a year on average, while some of Kairos’ other programs see upwards of 700 kids, Hollingworth said. She said Interval’s capacity was constrained in part by the individualized care it provided: when the home accepted a child with a history of aggressive behavior, other children could not be placed there at the same time for safety. Weekend appointments also often carried a waitlist while weekday slots sat vacant.
Hollingworth said the program offered structure without adding to a child’s existing load of appointments and requirements. The home was designed to feel like a trip to “grandma’s house” instead of a day in a full-time residential treatment facility, according to Susan Tremper, who worked as a live-in provider at the Medford facility. Staff structured a child’s day to resemble their usual routine while creating openings to address specific behaviors, such as anger or shyness. Children did arts and crafts, went to the movies or the local science center, did homework and made choices about time alone and what to eat. Hollingworth said that real-world practice with new skills, including building trust with adults, helps children translate what they are learning from other programs into instinct.
“We found that our respite providers were able to see more success in a shorter period of time that builds on a lot of those other skills,” Hollingworth said. Especially for foster children, she said, respite care can create routine and normalcy in a destabilizing experience and increase the success of a foster placement.
Kairos was in talks in 2024 with Jackson Care Connect, the Department of Human Services and another coordinated care organization to open a second home and serve more children. That plan did not come together. “That’s a hard loss to have had (respite) for so long and then for it to go away without much notice or a plan,” Hollingworth said.
Respite care dates back to the 1980s, when states shifted away from institutionalizing children and toward keeping them with their families. Oregon funded local respite care networks for nearly a decade before cutting the service from the state budget in 2010, leaving the work largely to a handful of nonprofits such as Kairos. State health and child welfare officials have spent years trying to reintroduce respite statewide. Oregon’s health and child welfare agencies have invested in recent years in other youth outpatient behavioral health services designed to stabilize a child after a crisis. For years, the state has ranked among the worst in the nation for access to youth mental health care. But providers, state commissions and local mental health authorities have repeatedly said there are still serious gaps in pediatric services — and have flagged respite as one of the biggest needs remaining to build a functional support system for kids and their families.
Local systems of care, including those in Lane, Linn, Benton and Lincoln counties, have told state officials that regularly accessible respite is one of their communities’ biggest unmet needs. A special report in a lawsuit against Oregon over its practice of placing foster children in hotels called for the state to provide more respite options, and a state commission that reviews which services Medicaid should cover has continually recommended respite as a treatment for nearly three dozen behavioral health conditions. Some families can obtain respite if their child is in foster care or another state-run youth system, but there are not enough providers to meet demand.
Only half of the state’s coordinated care organizations currently list providers offering overnight respite care in their member benefits documents. Officials are now exploring how the state could require Medicaid coverage of respite, the approach used in 48 other states. Providers currently negotiate privately with the networks over how to provide and fund the care, which makes it hard for them to compare notes.
The unmet need shows up in emergency departments. A report released earlier this year by the Oregon Health Authority’s Ombuds Office linked a rise in children boarding in emergency departments for behavioral health concerns to inadequate outpatient services before a crisis. Children of all ages saw a 15% increase in emergency room visits for mental health crises or substance use between 2020 and 2024, the report found, and visits among children under age 6 jumped 74%.
Cate Drinan, a pediatric patient advocate with the Ombuds team, said the families she works with have almost always tried to obtain treatment for their children first. “Either the services that they have in place in the community aren’t sufficient to hold them, or the services that they need don’t exist or aren’t available in their region,” she said. After repeated emergency room visits and no help managing a child’s needs, Drinan said, some families reach a breaking point and relinquish their children into the custody of child welfare. If those children were already in the care of foster parents, she said, it could mean another disorienting move. “The children are sent back home, and the cycle starts all over again because they haven’t found any meaningful intervention,” she said.
Adding respite as a standard Medicaid service would require a waiver from the Centers for Medicare and Medicaid Services allowing Oregon to deviate from federal standards, and the state’s current Medicaid waiver, which could include respite, expires in 2027. Whether CMS would approve such a request is unclear. Under President Donald Trump, the federal Medicaid agency has made a number of changes to make it harder for states to obtain a waiver. Even if respite were approved, Oregon would likely need to pitch in state dollars to fund the service, Williams said — something lawmakers have declined to do at least three times since 2023. A mandate would not resolve the operational, licensure and administrative costs of running programs that must be ready to care for children at any time.
The networks themselves are under pressure. Rigsby said coordinated care organizations are stretched thin between rising costs and state Medicaid expansions that have grown the list of services they must provide. “We have a healthcare benefit that honestly we can’t afford,” he said, adding that their priority has to be on services with the most demand. Federal cuts to Medicaid funding are expected to add to those pressures.
Anna Williams, director of Oregon’s System of Care Advisory Council, which is tasked with improving local youth services, described respite as a “proven approach” that saves the state money in the long run. She said it relieves the stress of dealing with trauma or complex disabilities, which can fracture family relationships, and can prevent deeper and more expensive crises that send children to emergency rooms or child welfare. “If we can get people into respite care, we may not need an emergency room or an inpatient setting,” Williams said. “It can be massively preventative if people can just take a break.”
Williams said expanding access will likely require action in multiple parts of state government, including lawmakers. “It’s going to take a significant amount of time and a decent amount of state-level investment in order to get something up and off the ground like this,” she said. “Until we get it turned on at the Medicaid level, which is how you actually ensure statewide access,” she said, “it’s going to continue to be a kind of catch-up.”
Kairos is still trying to find a way to reopen Interval House, and Hollingworth said families who once used the program keep asking when it will return. Some of those caregivers have told her that after seeing improvement with respite care, old concerning behaviors have returned, putting strain on the whole family. “It cannot be overstated the impact that the break has on everybody,” Hollingworth said. “The benefits ripple out to every single system a child touches.”
For Miller, the respite she found in Lane County remains a few Saturday hours a month. “There were so many times that I felt like I was failing as a parent because it was so hard to find services for my child,” she said. “We have set up this system where we are not helping families to flourish. We are setting them up to fail.”
This story was originally published by InvestigateWest and distributed through a partnership with The Associated Press.