In Washington state, a new proposal aims to change the way families who care for children with disabilities are supported. Right now, parents of children with disabilities do not get paid for taking care of their kids. But this could soon change.
For over two years, Melissa Kerson, a mother from Washington, has been caring for her son full time after he was diagnosed with a rare genetic disorder. This disorder causes epilepsy, blindness, and developmental delays. Although the state offers some help, including funds to hire a caregiver, the shortage of workers makes it hard for families to find help. And because Washington’s law does not allow parents to get paid for caregiving until their child turns 18, families like Kerson’s have to make do without enough support.
Kerson explained her situation in a meeting with the Washington House Early Learning and Human Services Committee, saying that the hours of support she’s been offered are difficult to use because there aren’t enough caregivers. “These hours are a phantom,” she said. “Supposedly we have support, but it is inaccessible.”
Current Situation and the Need for Change
Under Washington law, only non-parents or guardians can receive payment for caring for children under 18. However, a new law being discussed in the state Legislature, House Bill 1200 and Senate Bill 5211, could change this. If passed, the bill would allow parents to be paid for providing care to children with developmental disabilities.
The new proposal seeks to ask the federal government for permission to use Medicaid funds to pay parents who provide “extraordinary care” for their children. According to the bill, extraordinary care means going above and beyond typical parental duties and providing medical care and attention that is essential for a child’s well-being.
Rep. Jamila Taylor, a sponsor of the bill, explained that the care some parents provide goes far beyond basic care, often requiring tasks that would normally be handled by a nurse. “It’s almost like being a nurse for your own child,” she said. Taylor introduced a similar bill last year, but it did not pass due to concerns about costs.
The Financial Costs and How It Could Help
This year, lawmakers are hoping to spread out the cost of the program over a few years to make it more affordable. The estimated cost in 2027 would be around $7 million, and it could rise to $23.5 million every two years after that.
Supporters of the bill argue that the money is already budgeted by the state to care for children with disabilities. If the state had enough non-parental caregivers, it would still need to find money to pay them. The bill would allow parents to be paid and would also bring in federal funds, which are currently lost because the state isn’t using the available caregiving hours.
Katie Scheid, a mother who cares for her daughter with severe medical needs, explained that paying parents for caregiving could save the state money in other ways. For example, parents who have to quit their jobs to care for their children often need support in other areas, like food assistance. Plus, providing at-home care is generally less expensive than sending children to institutions or hospitals.
What Parents Are Saying About the Proposal
Parents of children with disabilities have welcomed the proposal. Kimie Nova, a mother who cares for her daughter, explained that she has lost thousands of caregiving hours because she cannot find someone to help. She pointed out that while anyone else can be paid to care for her child, parents are not allowed to be compensated.
Senator Noel Frame, who is sponsoring the Senate version of the bill, added that the state has already allocated hours of care for children with disabilities. The problem is that those hours aren’t being used, and parents are being left out of the system. “Promises made should be promises kept,” Frame said.
For many families, this bill would provide much-needed relief. It’s not about paying parents to do their regular duties, but rather to recognize the extraordinary care they provide that can’t be done by others. Parents hope that the proposal will lead to better support for families who care for children with disabilities.
Conclusion: The Road Ahead
The proposal has received broad support, with nearly 50 lawmakers from both parties co-sponsoring the bill. However, its large cost remains a challenge, and it will have to go through several stages before it can become law. Still, for families like Kerson’s, this bill could make a huge difference in how they provide care for their children. If passed, it would be a step forward in recognizing the hard work and dedication of parents who care for children with disabilities.
(Source: newsbreak.com)