Just before Mother’s Day, a new online video has created national buzz, reminding us that moms have “The World’s Toughest Job,” one that requires long hours and selfless sacrifice day in and day out.
If this brought a tear to your eye like it did mine, imagine the extra challenges that come with raising a child with Down syndrome and join me in standing up for moms like Santa Barbara County resident Stephanie Eppert as the state budget is debated in Sacramento.
Stephanie is a single mom who was able to stabilize her family by becoming her daughter Jessie’s caregiver through the state’s In-Home Supportive Services program. Stephanie and Jessie’s story shows the opportunity IHSS provides for people with disabilities and their families to thrive, as well as what’s at stake if a current state proposal succeeds in capping the number of hours caregivers can work.
Providing care through IHSS meets two important goals for our state. First, it is the way we support the health and well-being of people with disabilities. Many IHSS clients like Jessie, or those with other disabilities, can live well at home with quality care, but without this care would have their health and independence compromised. Second, the program delivers an outstanding value for taxpayers as in-home care is far less costly than institutional care.
A proposal to cap the number of hours IHSS caregivers can work strikes at the heart of both goals. The proposal is an attempt to save money by not paying home-care providers overtime as required under federal rules. However, this plan will disrupt the continuity of care for people with disabilities who count on quality care, delivered by trained caregivers who are familiar with their unique needs.
The proposal wrongly assumes anyone can provide the same level of care, when in fact knowledge and skills required to care for someone with Down syndrome are particularly individualized. It also robs people with developmental disabilities — and all people who require more than 40 hours per week of in-home support — of their right to choose how they are cared for and by whom.
In many families, this chosen caregiver is a parent, sibling or a child — someone who can devote themselves fully to the time and training required to give attentive critical care, and someone who can be trusted with personal care.
The proposal also undermines the goal of the program to save taxpayer dollars; though represented as a budget savings, it comes with hidden costs as the health care of IHSS clients is compromised.
Stephanie describes caring for her daughter through IHSS as being thrown a life jacket when she and Jessie were drowning. Jessie’s challenges were so severe; Stephanie was urged to give up her daughter at birth. Unwilling to be separated, she struggled to balance working in low-wage jobs while finding adequate care for Jessie. They were on the verge of homelessness when they connected with IHSS.
Now, Stephanie fears this proposal will force the separation she’s worked her whole life to avoid. Through the IHSS program, Stephanie earns just enough to provide a modest life for herself and Jessie, who is now 20. If the proposal is enacted, her work hours will be reduced from 250 to 160 each month, and her income will be slashed by 36 percent. A cut of this magnitude would mean Stephanie must put Jessie in a stranger’s hands while trying to replace the lost income. Stephanie fears they’d need to rely on food stamps and even become homeless.
“We wouldn’t survive the cut,” Stephanie says.
With a budget surplus of $6.3 billion, we can afford to invest in quality home care. The alternative costs us more because it will force thousands of people into poverty and overburden hospitals and emergency rooms as clients receive care from people who aren’t as familiar with their needs.
We need budget proposals that will support Californians like Jessie and Stephanie, rather than causing them harm. Let’s honor moms and caregivers who deliver the quality care our communities count on.
— Das Williams represents the 37th District in the California Assembly.