For Immediate Release
Thursday, August 25, 2016

Contact: Margitte Kristjansson, 619-548-4304

California home care providers who care for their spouse or child are ineligible for Social Security, Medicare, and unemployment benefits.

Sacramento – Today In-Home Supportive Services (IHSS) home care workers met at the Capitol to deliver petitions to Governor Brown signed by over 3,500 Californians. The petitions call on the governor to sign Assembly Bill 1930, a bill sponsored by the United Domestic Workers/AFSCME Local 3930, and authored by Assemblymember Tom Lackey (R – Palmdale) with coauthors Assemblymember Lorena Gonzalez (D – San Diego) and Senator Mike McGuire (D – Healdsburg).

If a home care provider’s client is their spouse or child, they are excluded from making contributions to FICA and State Unemployment Insurance – leaving them ineligible for Medicare, Social Security, and unemployment pay. AB 1930 begins to address this injustice by convening a committee to study the economic impact exclusion from these benefits has on home care workers and their families.

“All caregivers work hard for their clients, and all caregivers deserve these very basic benefits,” said UDW Executive Director Doug Moore. “Today, we call on Governor Brown to help us in our work to fix this issue by signing AB 1930.”

“In-home care workers who care for their families are entitled to the same employment benefits that every other worker in the same program receives,” added Assemblymember Lackey.

Cathyleen Williams from Barstow worked as her son Caleb’s IHSS home care provider for nine and a half years until he passed away in March. When Cathyleen applied for unemployment insurance, she was denied because Caleb – her home care client – was her son. “No one should have to endure the death of their young child,” said Cathyleen. “But to grieve while also scrambling to make sure your bills are paid and you don’t end up homeless? I wouldn’t wish this nightmare on my greatest enemy.”

William Reed, a home care provider for his 39-year-old son with autism in Placer County worries about not only his own retirement plans, but those of his fellow spouse and parent caregivers as well. “We deal with high levels of stress, work without real respite time, or paid leave, and to add insult to injury, we can’t even count on Social Security or Medicare when we retire,” he said.

AB 1930 was passed unanimously by both the Senate and the Assembly. Caregivers are calling on Governor Brown to look at the human impact that life without access to unemployment benefits, Social Security, and Medicare has on caregivers, and sign AB 1930.


United Domestic Workers of America (UDW)/AFSCME Local 3930 is a home care union made up of nearly 94,000 in-home caregivers across the state of California. UDW caregivers provide care through the state’s In-Home Supportive Services program (IHSS), which allows over half a million California seniors and people with disabilities to stay safe and healthy at home.

Patricia Kutzer

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.

Reyna T 2 (2)

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.

UDW asked and you answered!

Hundreds of spouse and parent caregivers have responded to UDW’s survey on how ineligibility for Social Security, Medicare, and other benefits impacts our families. Currently home care workers who care for their spouse or child are unable to receive important retirement and social insurance program benefits. Due to state and federal laws, these providers are currently unable to make Federal Insurance Contributions Act (FICA) and State Unemployment Insurance (SUI) contributions on their paychecks, which fund these benefits.

Of providers surveyed, approximately 75 percent of us care for our child, while 17 percent care for our spouse.

Figure 1

An overwhelming 92% of those surveyed are in favor of changing state and/or federal laws to allow parent and spouse providers to receive Social Security, Medicare and other benefits.

 figure 2

Nearly 91% of providers surveyed said this issue should be a high priority for UDW.

 figure 3

About 90% of surveyed providers want to fight for Social Security and Medicare knowing if we win, we would be required to contribute 7.65% of our wages to FICA.

 figure 4

And about 81% of providers who were surveyed want to fight for unemployment benefits knowing if we win, we would be required to contribute a small portion of our wages to the SUI program.

 figure 5

In addition, many of us expressed worry about what we will do as we age without the security that comes with Social Security and Medicare.

“I have no retirement plans as a parent provider. Not only do I have to worry about who will care for my daughter Katie when I am unable to care for her, but I will have to worry about how I will live as well.” -Claire Kaufman, an IHSS provider from El Dorado County

“We live month to month, because I don’t make much as my daughter Delaina’s full-time home care provider. And if something were to happen 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, we could lose our home, our car – everything.” -Christine Baur, an IHSS provider from Kern County

Our next steps

This year, we are sponsoring Assembly Bill 1930, which would establish an advisory committee to look at the impact that the denial of state unemployment insurance and federal Medicare and Social Security benefits has on IHSS spouse and parent providers. This will create awareness of the problem, and educate lawmakers and the public on this injustice.

On a federal level, we’re supporting the Social Security Caregiver Credit Act of 2016 in the United States Senate, and asking California Senators Dianne Feinstein and Barbara Boxer to stand with us by cosponsoring the bill. The bill is a step toward winning Social Security and Medicare for parent and spouse home care workers throughout the country.

It’s not too late to share your thoughts and experiences with UDW. If you are a spouse or parent IHSS provider, click here to take the survey. And click here to tell Senator Feinstein and Senator Boxer to join us in our fight to win justice for home care.