The Parent Caregiver Crisis: What a Lack of State Funding Means for Families
The Arc of Spokane’s Spokane County Parent Coalition staff recently traveled to Ellensburg, Wash. to participate in a retreat with Parent Coalition Coordinators from across the state. This is a small but mighty group of parent advocates who help empower families and individuals with intellectual and developmental disabilities (IDD) to share their stories and lived experiences with legislators, policymakers, and their communities.
Throughout the retreat, the major topic of conversation was about the challenge families face while caring for loved ones with complex medical needs and IDD. In the midst of a caregiving workforce crisis, parents and family caregivers play an ever more important role in helping their loved ones remain safely at home living a purpose-filled life.
Families have shared concerns regarding recent comments made by the Department of Health & Human Services (HHS) about family caregivers and how those comments do not reflect the reality many families live every day. Parents are often coordinating and managing medical appointments, therapies, behaviors, school meetings, transportation, daily care, and supervision all at once. Caregiving is a full-time responsibility that continues long after the work day ends.
In addition to their role as parents and caregivers, there is also the unpaid work parents have to train new caregivers. For individuals with significant support needs, care is highly individualized. Parents often spend hours or weeks teaching new staff about communication styles, routines, sensory needs, medical concerns, safety supports, feeding needs, and behavior strategies specific to their loved ones, and do so without compensation. Families have also shared that constant caregiver turnover is exhausting and stressful for both the individual receiving care and their family. Gaps and inconsistencies in care lead to preventable crises when strong supports are not in place, often creating greater costs in the long run. In many cases, parents are the only available source of respite and know their loved one’s care needs the best. As the caregiver shortage continues, the need for respite grows. If families lose that option, individuals may face crisis situations that leave them with few alternatives, increasing the risk of institutionalization, hospitalization, homelessness, or incarceration. All of which limits an individual’s ability to live and thrive in their communities.
Washington State’s ongoing budget concerns mean it is more vital than ever that the state protects services that support the IDD community. Continued funding for programs that help individuals remain safely supported in their homes, including respite, employment support, and caregiving services is absolutely critical.
To become more involved in sharing your testimonies or advocating for continued state funding for services for individuals with IDD and their families, contact The Arc of Spokane’s Spokane County Parent Coalition at advocacy@arc-spokane.org or by calling 509-789-8797.