The Legislature has the opportunity this session to make a huge impact on the lives of thousands of families caring for a child with developmental disabilities in our state.
As the mother to a 17-year-old son with developmental disabilities, I won’t get to take advantage of this new policy, but my organization, Nuestras Raices, serves many people who would be eligible to be paid caregivers for their children. Because of the shortage of caregivers, lack of cultural competencies and language barriers, many parents/guardians face the tough decision to stay home and care for their child, adding more financial stress to the family.
My 17-year-old son has cerebral palsy, brain injury and epilepsy. I must find caregivers who know how to work an oxygen machine, a g-tube, a suction machine, a pulse oximeter, do transfers to and from his wheelchair, and use other medical equipment. My son has seven medications to combat his seizure disorder. His needs require 24/7 care. He is fragile and must be cared for by people who know his needs best.
Finding strangers to care for my son is nearly impossible. Because of the caregiver shortage, I pay my mother to care for my son and that means we all must live together in order to make the finances work. There are many families across the state like mine who do not have an available and qualified relative to come live with them and provide care to their child.
House Bill 2184, sponsored by Rep. Jamila Taylor, D-Federal Way, will pay eligible parents of children with developmental disabilities to provide the caregiving support the state currently pays a stranger to do. Because so many children with developmental disabilities are not served in day cares, before and after school settings, or even schools, parents of children with developmental disabilities are unable to hold down jobs outside of the home. Some become disabled themselves. This has disastrous consequences for single-parent households, especially for those trying to care for other children.
That is why this bill is so important. The needs of our community outpace the availability of qualified caregivers. It makes good fiscal and policy sense to pay able and willing parents to provide the care our children need, rather than forcing us to contend with chronic caregiving shortages to keep our families housed and fed.
According to a 2022 caseload cost report from the state’s Developmental Disabilities Administration, 49,805 people are enrolled as a DDA client in our state and 72% are receiving care and support from a parent or relative. As of now, only parents of developmentally disabled adults can be paid to provide care to their adult children. Centers for Medicare & Medicaid Services requires additional safeguards be put in place for minor children to protect children from neglect and abuse,
The Legislature can make a huge difference in the lives of people with developmental disabilities and their families, but it must act quickly. This policy change could impact more than 1,350 families in Spokane County that are served by Developmental Disabilities Administration.
Not everyone is eligible to be paid caregivers. Parents who want to be paid caregivers must meet the same eligibility requirements as nonrelated caregivers.
Passing this bill is an important step to lifting families out of poverty and recognizing the extraordinary caregiving labor that the state relies upon to keep children out of more costly institutionalized care.
Fernanda Mazcot is executive director Nuestras Raíces Community Center in Spokane.