Supporting (and Paying) Parent Caregivers
Anyone who has a waiver with DDA knows there is a shortage of in-home caregivers. Parents whose children are on DDA waivers with respite and personal care hours are not receiving care to fulfill those hours. As a result, parents are doing most if not all of the personal care. Without revealing too much personal information in order to protect his dignity, my son with Down syndrome is 9 years old and still requires a caregiver to take care of his personal needs. A nondisabled 9 year old can independently take care of his personal hygiene, dress himself, and get into bed consistently on his own. A nondisabled 9 year old understands not to turn on the cooking appliances or touch the fireplace guards. A nondisabled 9 year old does not run out into the street or parking lot in disregard of danger. These are personal care concerns for which my son needs attention. His DDA plan allows for about 40 hours per month for which he does have an outside caregiver. However, even these hours do not cover all of his personal care needs. My husband and I, his parents, do the rest. His needs require one of us (or a trained caregiver) to be within sight at all times. He cannot attend a before or after school daycare because they will not support him. As a result, we need to have work schedules where at least one of us is home in the morning and the other after school and bedtime. Sometimes it takes both of us to support him.
House Bill (HB) 1694 aims to address the home care worker shortage in Washington state and, among other things, directs DSHS to begin a cost and feasibility study for parents to become the paid caregivers of their children under age 18 who are medically complex or have intellectual or developmental disabilities. Whitney Stohr is the mother of a 5 year old named Malachi who is medically complex, uses a trach, and experiences epilepsy and spina bifida. She recently testified in support of HB 1694 in a public hearing. She explained to legislators that she has two main roles in her son’s life: a nurturing and loving parent and a nursing caregiver. Taking care of a medically complex child is so much more than a parent delivering the occasional first aid to a child. Malachi requires daily if not hourly medical support which required Whitney to resign from her job and put her career on hold. Malachi’s father, Whitney’s husband, is able to work but works mainly from home so he can assist. Malachi’s parents cannot be considered paid caregivers because Malachi is under that age of 18. Parents of children 18 and older can be compensated as caregivers under the current law.
Whitney has been very involved in advocating for parents to be paid caregivers. In her words: “My passion project in disability/caregiving policy is around caregiver pay. I believe that all family caregivers should be compensated for the care work they do. Care work is a job, and family caregivers deserve the recognition, pay and benefits that come along with employment. I am one of the Leads of an informal coalition of parent/family caregivers, called Washington For All Families Coalition, which supports the development of a legislative or regulatory pathway by which parent-caregivers of children with disabilities under age 18 can become contracted (and thus paid) providers through the state….Other states do pay parent-caregivers to care for their medically complex children. This issue is trending, and the conversation around caregiver pay is not going away.”
Engrossed second substitute HB 1694 passed the House of Representatives and is currently in the Senate. If it passes the legislature, the new law would remove some of the barriers for paid caregiver recertification. There would be more flexibility in paid caregiver testing requirements. Close family members could be paid caregivers with only doing half of the required training. The cost and feasibility study is a small step in the direction of allowing parents to be paid caregivers for their children of any age who are medically complex or have intellectual and developmental disabilities. A few other states, such as California, do pay parents as caregivers. I look forward to seeing this study and will continue to advocate on this issue to my legislators.
**Courtney Criss is the Leadership and Advocacy Manager at The Arc of Snohomish County. She is also a wife and mother of four children, two of which have Down syndrome. She was born and raised in the Seattle area and dreams of an inclusive society for all. Opinions expressed in this article are her own and are not attributed to The Arc of Snohomish County.