My 39-year-old son Jacob was born with a brainstem defect. He relies on me 24/7 to provide for all of his needs, including bathing, preparing his meals, paramedical care, and exercise. My home care wages are the primary source of income in our home when my husband has trouble getting landscaping work. I’m grateful for the opportunity to work as Jacob’s home care provider, but I’m frustrated that my work is not taken seriously.

Exclusion from Social Security and Medicare is going to hurt my family. At some point, I may not be able to care for Jacob any longer, and I will need to retire. It makes me angry to know that even if I retire from home care, I will likely never be able to stop working. Both my husband and I will have to keep working somehow until our bodies fall apart. We’re in our 60s, and worrying about our financial future has caused me many sleepless nights. All workers, including parent and spouse home care providers, deserve access to Social Security, Medicare, unemployment, and paid family leave benefits.

Roxanne Bender is an IHSS provider for her son Jacob in El Dorado County. Read more about our fight to win Social Security and Medicare for spouse and parent providers here.