You never think it will happen to you. But what happens when it does?
I used to have a full time job as a certified nursing assistant, I could take care of my kids and sometimes even had time for my second job as a hairdresser. But in the blink of an eye that all changed. Seven years ago my teenage son was involved in a serious car accident that left him with permanent brain injuries and most of his body paralyzed.
It was in that instant, and the moments to follow, that I quickly began to realize my son would need around the clock care for the rest of his life. I thought life as I knew it would never be the same – until I heard about respite care.
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Since the accident, I have been my son’s primary caregiver through a Medi-Cal funded program called In-Home Supportive Services and have been fortunate to learn about and use respite care. Respite care is temporary non-medical care and/or supervision provided to developmentally disabled clients through one of the 21 regional centers administered by the California Department of Developmental Services. Respite providers relieve family caregivers and give us a few hours’ break each month from the demanding responsibilities of providing nonstop care.
Respite allows me to take care of my other obligations without having to worry about who can care for my son. Simple tasks like running to the grocery store, taking my other children to appointments, or doing anything for myself would be nearly impossible without respite services. However, as much as I and other families value respite care, I was disappointed to learn that there is often a ridiculous amount of money spent on administration of the service instead of the service itself. In my opinion, there needs to be more checks and balances on respite care.
Without respite care, family caregivers of developmentally disabled individuals are at risk of physical and emotional burnout – placing them and their loved ones in jeopardy.
Respite has proved to be a necessary service and not a luxury item for me. However, many companies who contract with regional centers to provide respite care are taking advantage of the money used to fund it.
A recent statewide audit revealed that a lot of regional centers aren’t conducting reviews of respite vendor files to make sure the information they need to provide is accurate and complete. The audit also revealed that some respite care companies spend up to 30 percent of the money they receive from the state on administrative costs. This is unreasonable. And this lack of oversight is taking place despite the fact that respite hours are capped and many caregivers do not receive enough respite hours to meet their needs. On top of that, this is a publicly funded program serving the most vulnerable population and is at risk of budget cuts.
There is no doubt this issue needs to be addressed. That is why I am calling on the California Legislature to support Assembly Bill 1380 and establish a cap on respite agencies’ administrative costs to 15 percent, ensuring that at least 85 percent goes to direct service costs.
Capping administrative costs will ensure that more money goes to serving people with developmental disabilities.
It’s time we keep the money in the program and help those who need the program most.
Olga Evans is an In-Home Supportive Services caregiver and member leader of SEIU Local 2015. She can be contacted at firstname.lastname@example.org.