My oldest son Ronald was studying to become a professor when one day he had a catastrophic stroke that left him quadriplegic, non-verbal, and dependent on a feeding tube. After his stroke, he was initially in a nursing home, but I could see it wasn’t good for his health. My family decided the best thing for him was to receive care at home. About eight years ago, I quit my job of 16 years to become Ronald’s full-time home care provider.

All of my money goes to my bills. I don’t have enough to set aside in a savings account. At this point, I just have to hope nothing happens to me. It isn’t easy caring for someone with my son’s needs, but I plan to keep providing him care as long as he needs me. Not only because it is what’s best for him, but also because without Social Security, I can’t afford to retire. Parents and spouses who provide care for their loved ones deserve the same benefits as all other working Americans.

Patricia Kutzer is an IHSS provider for her son Ronald in Madera County. Read more about our fight to win Social Security and Medicare for spouse and parent providers here.

My husband David’s meningitis caused paralysis on the left side of his body and several neurological problems. For a while I was able to continue working my full-time job, and pay into important programs like Social Security and Medicare. But as David’s condition worsened, I had to start reevaluating what was best for our family. David became reliant on a wheelchair seven years ago, and that’s when I knew it was time to change jobs. I left my old job, and became my husband’s full-time home care provider.

When I found out that I was no longer able to pay into Social Security and Medicare, I became really stressed. I hope I worked enough years in other jobs to qualify for some Social Security, but I’m not sure.

I don’t understand how I can work full time, but be denied basic benefits. I can’t and shouldn’t have to leave my current job as my husband’s home care provider just to become eligible for programs other workers qualify for automatically.

Reyna Tellez is an IHSS provider for her husband David in Imperial County. Read more about our fight to win Social Security and Medicare for spouse and parent providers here.

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.

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.

 Social security and more benefits for parent and spouse providers

There are four things that all working Americans should be able to rely on: Social Security so that we can meet our basic needs when we retire, Medicare, paid family leave, and unemployment benefits.

But many IHSS providers are not eligible for these vital social safety nets now, or later when we need them most.

That’s because, thanks to a loophole in the Internal Revenue Code, parents and spouse caregivers are not currently allowed to have Federal Insurance Contribution Act (FICA) contributions deducted from our paychecks. FICA is what funds Social Security and Medicare. The same family employment exemption prevents parents and spouse providers from getting unemployment benefits and paid family leave.

“I’ve been my son’s IHSS provider for 20 years,” said El Dorado County UDW member Roxanne Bender. “I’ve worked like everyone else, yet my husband and I may never be able to retire because I don’t qualify for Social Security and Medicare.”

So UDW is fighting for the rights of all providers to have access to these benefits—just like how we fought to be included in the Fair Labor Standards Act so that we could earn overtime pay.

But like our overtime fight, winning these benefits for parent and spouse providers will not be easy or quick, and would involve changes to federal and state laws. To start, our union is sponsoring Assembly Bill 1930, a first step towards educating California lawmakers and the public about this issue and the economic insecurity it creates for thousands of IHSS providers.

“Worrying about my family’s future keeps me up at night,” explained Roxanne, who testified in front of lawmakers in March. “Being excluded from benefits as basic as Social Security and Medicare makes me feel undervalued and underappreciated.”

Share your story! It may help us secure more benefits for spouse and parent providers. If you have been impacted by this issue, email Paulina at [email protected] to tell us your story. You can also stay updated at udwa.org.