Families of children with developmental disabilities testified in front of a Washington House committee on Jan. 29. (Photo courtesy of Katie Scheid)
Two-and-a-half years after Melissa Kerson’s son was born, she had to give up her dream job and care for him full time.
Kerson’s son was born with a rare genetic disorder that causes epilepsy, blindness, and developmental and intellectual disability.
Although the state Developmental Disabilities Administration offered support for Kerson to hire a caregiver for her son for a fixed amount of hours, a workforce shortage made it difficult to find someone. And because Washington does not pay parents to care for young children with disabilities, the hours allocated to Kerson’s family were left unused.
“These DDA hours are a phantom,” Kerson told the House Early Learning and Human Services Committee last week. “Supposedly we have support, but it is inaccessible.”
Under Washington 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.
Legislation making its way through the Legislature this year is trying to change that. House Bill 1200 and Senate Bill 5211 would require the state’s Developmental Disabilities Administration to ask the federal government for permission to use Washington’s Medicaid funding to pay parents of minors with developmental disabilities.
“These are folks who are at home doing very complicated care,” Rep. Jamila Taylor, D-Federal Way, said. “It’s almost to the level of being an actual nurse for your own child. This is extraordinary care that will help their child survive day in and day out.”
Taylor sponsored a similar bill last year that failed after concerns about the high cost.
Many states approved paying parental caregivers during the COVID-19 pandemic and have since made the coverage permanent. Washington was not one of the states to expand its caregiver pay during the pandemic.
Under this year’s proposal, the Developmental Disabilities Administration has until Jan. 31, 2026 to submit a request to the federal government to amend Medicaid funding to allow pay for parents providing “extraordinary care” to their minor children.
“Extraordinary care” means care that exceeds the range of activities that a legally responsible individual would ordinarily perform and is necessary to assure the health and welfare of a child, according to the bill.
Until July 1, 2031, only children in two specific waiver categories that require the most complex care would be eligible. The Developmental Disabilities Administration estimates there are 1,017 families who would qualify for this first round of caregiving hours.
By July 2031, any child eligible for Developmental Disabilities Administration services would become eligible under the proposal.
‘Promises made should be promises kept’
The proposal, which has nearly 50 bipartisan co-sponsors in both chambers, passed a Senate committee last week and is scheduled for a vote out of a House committee on Friday. It will then make its way through the Legislature’s fiscal committees.
Its large price tag could prove problematic in a year when the state is facing a multi-billion dollar budget deficit.
Taylor said spreading out implementation over a few years will hopefully help ease the costs, which estimates peg at around $7 million of state funds in 2027 and then $23.5 million every two years afterward.
To supporters, the money for this care should already be budgeted by the state. If there were enough non-parental caregivers for these children, for example, the state would have to find enough money to pay them.
“This bill calls their bluff,” Katie Scheid said. Scheid cares full-time for her daughter, Millie, who requires a feeding tube and can have more than 50 seizures a day.
Sen. Noel Frame, D-Seattle, rejects the idea that the bill is an expansion of services.
Frame, who is sponsoring the Senate version, said the only reason this bill will cost the state money is because the Developmental Disabilities Administration has been budgeting based on how many people use the allowed hours of care, not the number of people eligible.
“Promises made should be promises kept,” Frame said. “These hours have already been allocated, and it is irresponsible that DDA has been scheduling based on utilization rather than allocation.”
There are also ways that the state could save money by doing this, Scheid said. The caregiving hours get a federal match, which is currently lost to the state because no one is using them.
Scheid added that paying parental caregivers could help the state offset costs in other programs. For example, family members who have to quit jobs to care for disabled children often need support in other ways, like state-funded food assistance. Funding at-home care is also less expensive than institutional or hospital settings.
‘Extraordinary care’
The “extraordinary care” that parents of children with disabilities provide can include changing diapers or helping their child go to the bathroom, learning how to use a feeding or breathing tube, and taking care of them during a seizure or other medical event, Taylor said.
“This is not a bill to pay parents to be parents,” Kimie Nova told the House Early Learning and Human Services Committee. “This is a bill to pay us for the work we can’t hire out. No one else is willing.”
Nova cares for her daughter and has lost at least 5,000 hours of caregiving because she can’t hire someone else.
Even if a family can find a caregiver, turnover is often high, said Courtney Criss, at the Arc of Snohomish County. Many children also thrive when cared for by their parents.
While Washington continues to move away from state-run institutions and toward a more community-centered approach, it must increase its support for in-home caregiving, Scheid said.
This proposal would be an important step in dramatically increasing that in-home caregiving workforce, Scheid said.
“Right now, anyone off the street can be Millie’s caregiver except her parents,” Scheid said. “It’s a unique ban, and we’re just trying to remove that.”