When my daughter Delaina was in second grade, an undiagnosed tumor in her brain hemorrhaged and left her with brain damage. Now, Delaina is 22 years old, and I work as her home care provider. She can understand me, but has behavior issues. Delaina can do basic math and write her name, but it’s hard for her to learn more. She’s also lost her ability to walk or feed herself.

We live month to month, because I don’t make much as Delaina’s full-time home care provider. And if something were to happen to IHSS and I lost my job as her provider, I wouldn’t even qualify for unemployment. In the time it could take me to find a new job, I could lose my home, my car – everything.

I’m 45 now, but I’m concerned about what will happen to me when I get older. Being told I’m not eligible to pay into FICA makes me feel like the quality in-home care I provide isn’t considered real work.

Christine Baur is an IHSS provider for her daughter Delaina in Kern County. Read more about our fight to win Social Security and Medicare for spouse and parent providers here.

My husband Leon is 69 years old and lives with COPD and cirrhosis of the liver. My full-time job since 2000 has been providing him with in-home care, so he can remain in our home where he is happiest and healthiest. I’ve been a home care provider for 16 years, and for 16 years I’ve worried about what would happen if an unexpected tragedy struck my family. One of my biggest fears is my husband passing away. I would be grief stricken, and because I don’t qualify for unemployment, I would also have no financial safety net while I searched for another job.

As I approach my 60s, I’m not able to prepare to retire in the next few years like most people. Instead, I’m constantly worried. I’m worried about how we’re going to live if I’m ever unable to care for Leon. Without the safety net of Social Security, I would no longer be able to contribute to our household expenses. Spouse and parent providers aren’t asking for extra. We just want our work to be treated fairly and with the same dignity and respect other workers receive.

Bernadette Evans is an IHSS provider for her husband Leon in Riverside County. Read more about our fight to win Social Security and Medicare for spouse and parent providers here.