Yesterday, UDW caregivers from around the state gathered in Sacramento to urge Governor Brown to sign Assembly Bill 1930. We delivered petitions signed by over 3,600 IHSS providers and members of our communities to his office in the Capitol.

Assembly Bill 1930 addresses a problem facing an estimated 86,000 parent and spouse IHSS providers who are currently left out of Social Security, Medicare, and unemployment benefits because of unfair state and federal policies.

“Parent and spouse providers work as hard as other home care workers,” said Lidia Rodriguez who works as the home care provider for her son and a 73-year-old woman in Stanislaus County. “All workers should have access to these benefits.”

Susana Saldana provides care for her son Mario who lives with cerebral palsy in Merced County. Unlike Lidia who should receive Social Security and other benefits for the work she does for her elderly, non-family client, Susana cares solely for Mario and she’s worried about her future. “I may not be able to retire,” she said. “I could end up homeless without Social Security.”

If AB 1930 becomes law, it will be the first step in our journey to secure these vital retirement and social safety net benefits for home care workers who care for their spouse or child. The bill would establish the In-Home Supportive Services Family Caregiver Benefits Advisory Committee, which would study how denying workers benefits like Social Security and unemployment hurt IHSS providers and our families. “It’s an injustice,” said Assemblymember Tom Lackey (R – Palmdale), the author of AB 1930. “It’s something that is very wrong with our system.”

So far, with help from UDW caregivers, as well as Assemblymember Lackey and the bill’s coauthors, Assemblymember Lorena Gonzalez (D – San Diego) and Senator Mike McGuire (D – Healdsburg), AB 1930 has gathered widespread public support and was passed by both the Assembly and the Senate with unanimous, bipartisan support.

Another member of the legislature, Assemblymember Cheryl Brown (D – San Bernardino) who serves as a caregiver for her husband who lives with ALS, came out to support caregivers yesterday. “Home care providers do the tough, stressful, yet vital work of looking after the day-to-day needs of the people for whom they care,” she said. “Despite the important nature of in-home care, all caregivers are not treated equally.”

UDW Executive Director Doug Moore thanked the legislature for their support, and called on Governor Brown to follow suit. “Home care workers, like nearly every worker in this country, including our governor, should at the very least receive Social Security when they retire,” he said.

William Reed takes care of his 39-year-old son in Placer County. His son lives with autism and requires constant care. Although William receives retirement benefits from a previous job, he worries about his wife who doesn’t pay into Social Security or Medicare. “We follow the same guidelines,” he said. “We’re held up to the same standards as all IHSS home care providers…We are paid caregivers. This work is our job. We deserve to retire with the same benefits as nearly every other American worker.”

Cathyleen Williams’ son Caleb was born with a terminal heart defect. Cathyleen worked as Caleb’s IHSS provider in Barstow until he passed away in March. When she applied for unemployment, Cathyleen was denied, because her home care client was her son.

“No one should have to endure the death of their young child,” she said. “But to grieve while also scrambling to make sure your bills are paid and that you don’t end up homeless? I wouldn’t wish this nightmare on my greatest enemy.”

William and Cathyleen were joined by about a dozen UDW caregivers as they walked the petitions into the Capitol. Once inside, William and Cathyleen, accompanied by UDW Executive Director Doug Moore, Assemblymember Cheryl Brown, and Assemblymember Lackey took the petitions into the governor’s office. Assemblymember Lackey gave our message to a member of Governor Brown’s staff: “These are support petitions for this particular measure the governor will be evaluating soon. The measure was unanimous in both houses…it’s very, very important to very many people.”

Yesterday, with the delivery of our petitions, we gave Governor Brown over 3,600 reasons to do what is right and sign Assembly Bill 1930. He has until the end of September to sign or veto the bill.

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.

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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.

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.

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.

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.

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.

 

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

 

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.

 

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.

 

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.

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.

 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.