LAKE STEVENS—After Jessica Morrow, a Lake Stevens mother to a special needs child, had to stay at home to be full-time caretakers, she and 5,000 parents statewide, are now banding together to ask law makers for more support.
One of Morrow’s two children, Jayden (15), has multiple special needs with his two main diagnoses being level three autism and cerebral pals, in addition to seventeen sub-diagnoses including obsessive compulsive disorder. Due to these issues Jayden is non-verbal, needs a wheelchair to get around, and requires constant caretaking to ensure he’s remaining safe.
The Morrow family relocated to Lake Stevens in 2016 from Kansas because their home state, at-the-time, had no healthcare services for special needs children and the Pacific Northwest had a reputation for having robust social services. However, her family quickly learned the state’s laws were not as set up for supporting parents of special needs children than she expected.
Having a representative from the Developmental Disabilities Administration (DDA) Office visit their home to conduct an evaluation, for example, took over a year, and even to this day, Morrow explained the way state legislation is written does not allow for parents to be considered caregivers. As a result, Morrow and her husband have been working around the clock to care for their son with zero compensation.
In the last eight years, Morrow has been in-and-out of work because her child’s needs are so demanding, she informed the Lynnwood Times. Back in Kansas, she worked as a special needs educator and her husband was a local police officer.
The couple have been looking for over five years for a full-time caregiver because their son does qualify for Developmental Disabilities Administration (DDA) services, but to no avail.
“There’s already a crazy shortage for caregivers and when you go into the home care, and especially with children that crises is even worse,” said Morrow. “That’s why I was searching for a group of people to figure out what we can do to fix this because right now my husband and I have been busy taking care of our son because he’s no longer able to go to school because the school district said they can no longer accommodate his needs anymore.”
Though the Morrows were approved to have insurance quickly, many insurance companies often don’t approve some of the things Jayden needs such as new parts for his wheelchair, his medications, or a safety bed.
“It’s easy to get state insurance for him but the state insurance denies all of his needs. It makes no sense,” said Morrow.
Morrow eventually heard about a local group of womenwho were all having similar challenges all working together with their district’s legislatures to get a bill passed that would enhance safety nets for parents with disabled children. That group now has approximately 5,000 members according to Morrow.
Personally, Morrow reached out to Representative Sam Low, Carolyn Eslick, and Senator Keith Wagoner. Out of these law makers Sam Low was the only one who agreed to sit down with her for coffee, she said.
Still the drafted bill, House Bill 2184 that was spearheaded by Representative Jamilia Taylo, was introduced last session authorizing payment for parental caregivers of minor children with developmental disabilities did not make much progress. The bill was introduced in the House on January 5, and was referred to Human Services, Youth and Early Learning three days later who held a public hearing on January 10.
House Bill 2184, in summary, would require the Department of Social and Health Services Developmental Disabilities Administration (DDA) to apply to the federal government for amendments to the Community First Choice program and relevant existing DDA Medicaid waivers to allow parent caregivers of minor children with developmental disabilities to receive payment.
“These personal care hours that our children are given because they’ve gone through the assessments are entitlement hours. If we were [to] take all 4,700 families in this state and say we have 4,700 strangers and say these are our caretakers, the DDA Office would have zero choice to fulfill those hours but because we are parents they said that they’re not allowed to do that, which is not true they just don’t want to do it,” said Morrow.
The bill is scheduled to be reintroduced this December, but it will have a different title than the 2023 session, ‘Employing Parent Caregivers’, to steer away from the misinterpretation that the bill’s function was to pay parents to stay at home and care for their children. Morrow plans to testify in Olympia next year if that bill gains traction.
Author: Kienan Briscoe
9 Responses
I am paid to care for my 90 year old mother thru CDWA. Check them out
It is possible for adults to care for their elderly family members, it also allows parents to care for disabled children IF their child is over 18. Even then at 18 there are restrictions and reductions until after the adult child turns 21. parents of minor children are prohibited by the State of Washington to be compensated for being their childs caregiver.
Have you contacted the Arc of Snohomish County? They’re a non-profit that help families with special needs kids and adults with developmental disabilities. I’m on the board of directors.
We have had many conversations with the Arc. We have local Arch (King & Snohomish) support, but the state level Arc has not been truthfully helpful at all, honestly the opposite.
As a parent of a special needs child and an MSW, I applaud and agree 100%. In a normal non-dissability family a “normal” child would likely be in a latch-key situation and would likely not require a parent to stay home to caretake. While in the above situation it obviously is required. Rather than impose poverty on a family which increases the likelihood of becoming unhoused, food insecure, and or CPS involved due to the inability to properly care for a child with disabilities, why not support the family structure and enable those who best know how to care to care for a child with disabilities do so?
Thank you so much! I agree with you 💯 We need all of the support we can get behind this.
Yes! Agree 100%
So happy to see a story on this in WA finally!
I am the unpaid caregiver for my 4 year old daughter who requires complete care (blind, feeding tube, non-mobile, non-verbal with daily seizures.)
The state allocated her in-home care hours in lieu of institutional care. I am prohibited from being her caregiver until she turns 18, but literally any stranger off the street can be her hired caregiver. We have not found an outside caregiver to hire after years of looking.
38 states employed parents of minors since 2020, but not WA. We are SO far behind the rest of the country and no one disagrees with this as a policy. However, the state budgets off prior utilization and has repurposed these unspent funds elsewhere ($25 million per year.) This is our second year bringing this bill to the state legislature and they are once again telling us that they just don’t have the money to pay for children to actually use the hours they have been promised. They are intentionally keeping parents from becoming caregivers because then children could finally use the services they have been given. It is morally and legally wrong and we hope more stories come out like this one to shine a bright light on this awful situation.
yes! Thank you Katie, all of that is so true! We have to come together and make our legislative members remove those barriers and help our suffocating families! We deserve better!!!!