When Katie Scheid’s daughter, Millie, was two years old, their lives changed almost overnight.
Millie was diagnosed with severe cerebral palsy, after suffering a stroke in the womb at 39 weeks. Millie now requires 24/7 care. She needs to be fed through a feeding tube, she can’t speak, and she has more than 50 seizures a day.
The state determined Millie could receive 185 hours of personal care per month paid for through Medicaid. Under state law, anyone except a legal parent or guardian can get paid to provide personal care – bathing, dressing or managing medical needs – to a child under 18 years old. Parents are eligible for this pay only once their child becomes an adult.
But with a growing caregiver shortage, hiring someone can be difficult and expensive. Families often struggle to find a non-parental caregiver who can go through the intense training and onboarding it takes to receive pay to care for their child. State estimates show children in Washington are eligible for roughly 1.4 million hours of personal care each year that go unused.
Without caregivers to turn to, many parents end up quitting their jobs to care for their disabled children full-time. That’s what Scheid, who has two other children, was forced to do. She now cares for Millie full-time, unpaid.
“It’s really taxing on our family and for all the families like mine in the exact same situation,” she said.
Scheid and more than 500 other parents and advocates took to the Legislature this year to push for a bill that would have allowed parents of minors with developmental disabilities to receive pay, based on the number of care hours a child qualifies for under Medicaid.
With the session almost over, the bill is dead. Lawmakers were wary of its high cost. But parents and advocates say the proposal should have been an easy fix. They say the Department of Social and Health Services Developmental Disabilities Administration overestimated the funding and staff needed for the program.
“We need to be prioritized. It’s our turn,” said Adrienne Stuart, of Tacoma. Stuart’s eight-year-old son received a Developmental Disabilities Administration waiver until he died in 2022. “There are families who can’t keep the lights on, who can’t keep their families fed.”
‘A simple fix’
Darci Ladwig, of Spokane Valley, felt almost immediate relief when her daughter, Zoe Osborne, turned 18.
Nothing about the type of care her daughter required changed, Ladwig said, but once Osborne became an adult, under state law, Ladwig could begin receiving pay for her caregiving hours.
“Now I don’t have that financial worry on top of all the other things I’m trying to make work for her,” said Ladwig, who also works two part-time jobs.
House Bill 2184 would have required the state Department of Social and Health Services Developmental Disabilities Administration to ask the federal government for permission to use Washington’s Medicaid funding to pay parents taking care of children with developmental disabilities.
It was a move many states made during the COVID-19 pandemic. Some states are looking to expand this coverage now that many pandemic-era programs have expired.
Washington was not one of the states to expand its caregiver pay to parents during the pandemic. Jaime Bond, director of field services for the Developmental Disabilities Administration, said in a statement that the state did not want to take this step because of the uncertain costs and other complexity.
In Washington, personal care services are offered through the state’s Medicaid plan, not on a separate waiver, like many other states, Bond said.
“To have parents paid during the pandemic, DDA would either have had to allow it for all children under our current state plan system, or we would have had to develop a whole new program under a waiver authority which takes a very long time to do,” Bond said.
Parents saw House Bill 2184 as “a simple fix” that would not have cost the state much money, Scheid said. It also had broad support from lawmakers in both parties.
But a fiscal analysis of the proposal showed that allowing parents to receive caregiver pay would cost $1.3 million through next year to set up the program. Expenses would then jump to $95 million in the next two-year budget cycle.
Most of that money would fund 71 additional staff members and case managers at the Department of Social and Health Services to increase the number of home visits for parents who are receiving this funding.
The department also estimated that new families who don’t currently use caregiving hours in Washington would take advantage of the program, which could further raise the cost.
Bond said Washington case managers have some of the highest caseloads in the country, and clients have long told the Developmental Disabilities Administration that they want more face time with them. If even more people come into the system, she said more case managers will be needed.
“As our service delivery system grows and adjusts to serve people with increasingly complex needs our case managers need to know and do more for families, but are unable to provide the customer service that our families need with such high caseloads,” she wrote in an email.
But for the more than 500 parent advocates who pushed for the bill, the proposal was thought to be “budget neutral,” Scheid said.
The state already sets aside money to pay for non-parental caregivers for these children, Scheid said, but because there aren’t enough people to use those hours, the state money gets funneled back into the budget and federal matching funds are lost.
“If thousands of qualified caregivers showed up on the doorsteps of all of these families tomorrow, the state would need to find a way to pay for them,” Stuart said.
Rep. Jamila Taylor, D-Federal Way, who sponsored the parental pay bill, said the Developmental Disabilities Administration has a specific way that it wants to work with the federal government, and that doesn’t always align with what advocates think they should do.
Still, Taylor said she was surprised to see how much the department said the program would cost.
“DDA could’ve come to me the minute they knew it was going to be big,” Taylor said. “We could have come up with another strategy.”
‘Our kids need different care’
Hodan Mohamed, founder and executive director of Washington Multicultural Services Link, often sits in on assessments to determine how many care hours a child may receive from the state.
During these assessments, parents are required to share with a case manager what kind of care their child requires. That can include everything from bathing to eating to timing their medication to how often they go to the bathroom, Mohamed said. She added that at the end of this process, parents can be left traumatized.
“If I’m able to give all of that information, why can’t I work for my child?” said Mohamed, who spent years as an unpaid caregiver before her daughter turned 18.
The lack of parental care points to a larger issue in the lack of accessibility for DDA services, parents say. The process to apply for any support can be inaccessible for many parents, especially parents of color or immigrants, Mohamed said.
“There’s a lot of guilt to portray your son or daughter as a burden,” Ladwig said. “Their care isn’t the burden. It’s the systems that are supposed to support people that are the burden.”
Although the parental pay bill will not make it through this session, advocates will continue to fight until it becomes a reality, Scheid said.
In a short legislative session like this one, a costly new program is difficult to get through, Taylor said, but she said she will continue working with state leaders and those in other states to find the best process for Washington to use in paying parental caregivers.
She requested that the Legislature include funding this year for a pilot project to study how much allowing parental pay would cost the state, similar to a pilot program in Oregon right now. That project is not currently included in budget proposals, but lawmakers have until March 7 to finalize their funding plans.
“We’re more fired up than ever,” Scheid said.
