We all deserve social security and medicare

UDW Offices San Diego, UDW Headquarters 4855 Seminole Drive San Diego, CA 92115 Office: 619-263-7254 Toll Free: 800-621-5016 Fax: 619-263-7899

Sacramento 900 J Street Third Floor Sacramento, CA 95814 Office: 916-554-0931 Fax: 916-448-2306

Butte 2555 Zanella Way, Suite B Chico, CA 95928 Office: 530-894-2702 Fax: 530-892-0206

Merced 2935 Business Park Way Merced, CA 95348 Office: 209-386-1120 Toll Free: 866-255-7313 Fax: 209-725-3121

El Dorado/Placer 4220 Rocklin Road, Suite 3 Rocklin, CA 95677 Office: 916-751-2450 Toll Free: 888-228-0837 Fax: 916-751-2460 Imperial 548 Broadway Street, Suite 100 El Centro, CA 92243 Office: 760-425-4034 Kern 1830 Truxtun Avenue, Suite 207 Bakersfield, CA 93301 Office: 661-321-0239 Toll Free: 800-851-7272 Fax: 661-852-0741 Madera 120 North E Street Madera, CA 93638 Office: 559-395-4772 Mariposa 5148 Highway 140, Suite C Mariposa, CA 95338 Office: 209-742-6780

www.udwa.org

WE ALL DESERVE SOCIAL SECURITY AND MEDICARE

Orange 333 Civic Center Drive West Santa Ana, CA 92701 Office: 714-663-1082 Toll Free: 877-483-9937 Fax: 714-663-1052 Riverside 3600 Lime Street, Suite 421 Riverside, CA 92501 Office: 951-786-1300 Toll Free: 866-417-7300 Fax: 951-786-1318 San Luis Obispo/Santa Barbara 402 South Miller Street Santa Maria, CA 93454 Office: 805-349-9656 Toll Free: 877-369-6505 Fax: 805-349�0722 Stanislaus 416 North 9th Street, #I Modesto, CA 95350 Office: 209-526-5274 Toll Free: 866-307-7271 Fax: 209-526-5284

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Learn how an unfair exclusion from these benefits is hurting family home care providers

We all deserve Social Security and Medicare – but many caregivers are excluded from these benefits For over 79 years, Social Security and Medicare have provided Americans with a basic level of stability as we retire and get older.

But did you know that not all working Americans have access to these important social insurance programs?

Under current law, many home care providers who dedicate their lives to caring for family members with disabilities are excluded from Social Security and Medicare. Specifically, spouse and parent providers are not eligible to have Federal Income Contribution Act (FICA) deductions taken out of their wages, which are the contributions that fund Social Security and Medicare.

These workers are also excluded from other vital programs such as unemployment insurance and paid family leave.

In California, these unfair exclusions impact approximately 80,000 parent and spouse providers who provide care through the state’s In-Home Supportive Services program (IHSS). Without these benefits, home care providers are being denied the stability and security that all hardworking Americans deserve.

Join us in supporting equal benefits for spouse and parent home care providers – because we all deserve Social Security and Medicare.

United Domestic Workers of America (UDW)/AFSCME Local 3930 is a home care union made up of over 93,000 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.

We all deserve Social Security and Medicare – but many caregivers are excluded from these benefits For over 79 years, Social Security and Medicare have provided Americans with a basic level of stability as we retire and get older.

But did you know that not all working Americans have access to these important social insurance programs?

Under current law, many home care providers who dedicate their lives to caring for family members with disabilities are excluded from Social Security and Medicare. Specifically, spouse and parent providers are not eligible to have Federal Income Contribution Act (FICA) deductions taken out of their wages, which are the contributions that fund Social Security and Medicare.

These workers are also excluded from other vital programs such as unemployment insurance and paid family leave.

In California, these unfair exclusions impact approximately 80,000 parent and spouse providers who provide care through the state’s In-Home Supportive Services program (IHSS). Without these benefits, home care providers are being denied the stability and security that all hardworking Americans deserve.

Join us in supporting equal benefits for spouse and parent home care providers – because we all deserve Social Security and Medicare.

United Domestic Workers of America (UDW)/AFSCME Local 3930 is a home care union made up of over 93,000 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.

I’ve been a full-time IHSS home care provider for over 26 years. My daughter Sha’Quonna has Angelman syndrome, and needs my care round-the-clock. I don’t make a lot of money as a home care worker, and I don’t have a 401k or other retirement plans. I worry that without Social Security, I may have to work for the rest of my life.

Sha’Quonna will always need care, but I hoped to one day be able to retire from being her full-time caregiver, and allow her siblings to take over. But I do not think that will be possible, because I simply will not be able to afford it. I feel like my back is against the wall. I’m Sha’Quonna’s mother, but her care is also my job. I deserve all the rights and benefits that all other workers receive.

Roxanne B., El Dorado County parent provider 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.

LeTrese L., Riverside County parent provider

I’ve been a full-time IHSS home care provider for over 26 years. My daughter Sha’Quonna has Angelman syndrome, and needs my care round-the-clock. I don’t make a lot of money as a home care worker, and I don’t have a 401k or other retirement plans. I worry that without Social Security, I may have to work for the rest of my life.

Sha’Quonna will always need care, but I hoped to one day be able to retire from being her full-time caregiver, and allow her siblings to take over. But I do not think that will be possible, because I simply will not be able to afford it. I feel like my back is against the wall. I’m Sha’Quonna’s mother, but her care is also my job. I deserve all the rights and benefits that all other workers receive.

Roxanne B., El Dorado County parent provider 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.

LeTrese L., Riverside County parent provider

I was a home care provider for non-family clients for about six years before I began providing my husband Walter with care. Walter’s vision is deteriorating in his right eye, and he needs help with grooming, laundry, cooking, and other tasks.

I don’t understand why FICA contributions are no longer deducted from my wages. I didn’t stop working, I simply got a new client.

Providing in-home care for my husband doesn’t mean that my family no longer needs the safety net of Social Security, Medicare, unemployment, or paid family leave. Without access to unemployment, Walter and I both worry about what will happen to us if I suddenly get sick or have an accident and can no longer work.

We didn’t have these worries before, and I’m happy I was able to pay into Social Security and Medicare for several years before becoming Walter’s provider. But will it be enough?

Patricia K., Madera County parent provider 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.

David H., San Diego County spouse provider

I was a home care provider for non-family clients for about six years before I began providing my husband Walter with care. Walter’s vision is deteriorating in his right eye, and he needs help with grooming, laundry, cooking, and other tasks.

I don’t understand why FICA contributions are no longer deducted from my wages. I didn’t stop working, I simply got a new client.

Providing in-home care for my husband doesn’t mean that my family no longer needs the safety net of Social Security, Medicare, unemployment, or paid family leave. Without access to unemployment, Walter and I both worry about what will happen to us if I suddenly get sick or have an accident and can no longer work.

We didn’t have these worries before, and I’m happy I was able to pay into Social Security and Medicare for several years before becoming Walter’s provider. But will it be enough?

Patricia K., Madera County parent provider 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.

David H., San Diego County spouse provider

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.

Claire K., El Dorado County parent provider As my daughter Katie’s home care provider, I have no retirement plans or security. Without Social Security, not only do I have to worry about who will care for Katie when I am unable to, but I also have to worry about how I will live as well. Not having this security is incredibly stressful. If for some reason the IHSS program ended, I wouldn’t even qualify for unemployment insurance. I would have no way to pay my bills or support my daughters while I looked for another job.

I may be my daughter’s home care provider, but this is still my job. I work hard, and because of my daughter’s condition, I can’t take on a second job – she needs me full time. Social Security, Medicare, unemployment insurance, and paid family leave are important programs for working people. Being the spouse or parent of my client should not determine my eligibility.

Christine B., Kern County parent provider

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.

Claire K., El Dorado County parent provider As my daughter Katie’s home care provider, I have no retirement plans or security. Without Social Security, not only do I have to worry about who will care for Katie when I am unable to, but I also have to worry about how I will live as well. Not having this security is incredibly stressful. If for some reason the IHSS program ended, I wouldn’t even qualify for unemployment insurance. I would have no way to pay my bills or support my daughters while I looked for another job.

I may be my daughter’s home care provider, but this is still my job. I work hard, and because of my daughter’s condition, I can’t take on a second job – she needs me full time. Social Security, Medicare, unemployment insurance, and paid family leave are important programs for working people. Being the spouse or parent of my client should not determine my eligibility.

Christine B., Kern County parent provider

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.

Lisa R., Riverside County parent provider I’ve been a home care provider for my daughter Ariella for about seven years. That’s seven years of working hard to keep her healthy and safe at home, and seven years that I have been unable to contribute to Social Security.

I worry a lot. The money I earn as a home care provider is my household’s only income. Without access to unemployment benefits, what will happen to my family if I can no longer work? How will we pay our rent or even buy food?

And I know I will have to work until I physically can’t any longer. I’m scared of what will happen to me as I age without the benefit of Social Security or Medicare. Without Social Security, I will have little to no income when I retire. And without Medicare, I will have more and more out-of-pocket medical expenses. How am I supposed to live out my golden years without access to these vital programs?

Bernadette E., Riverside County spouse provider

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.

Lisa R., Riverside County parent provider I’ve been a home care provider for my daughter Ariella for about seven years. That’s seven years of working hard to keep her healthy and safe at home, and seven years that I have been unable to contribute to Social Security.

I worry a lot. The money I earn as a home care provider is my household’s only income. Without access to unemployment benefits, what will happen to my family if I can no longer work? How will we pay our rent or even buy food?

And I know I will have to work until I physically can’t any longer. I’m scared of what will happen to me as I age without the benefit of Social Security or Medicare. Without Social Security, I will have little to no income when I retire. And without Medicare, I will have more and more out-of-pocket medical expenses. How am I supposed to live out my golden years without access to these vital programs?

Bernadette E., Riverside County spouse provider

My daughter Maria is 40 years old, and lives with cerebral palsy. When I learned that as Maria’s home care provider, I do not qualify for benefits like Social Security, I was heartbroken. I try to save money, but home care is not a very high wage career. And it’s not like I can just stop providing Maria with the care she needs. This is my job, and I know her needs best.

I also know that care in an institution would be bad for her.

As I get older, there could come a day when I have to stop working because of my health. If that day comes, without Social Security and Medicare, Maria and I could be left homeless. Our household relies on my income, which means I can probably never stop working. If I do, we will have to rely on friends and family to help us. But that’s not right.

I’ve worked just as long and just as hard as anyone else, and I should qualify for the same retirement benefits and safety net programs as other workers.

Violeta R., San Diego County parent provider When my son Ryan was born with cerebral palsy, I quit my job to become his full-time home care provider. That was over 10 years ago – 10 years that I haven’t been able to pay into Social Security. I’m glad that I will have some retirement security thanks to my old job, but it likely won’t be what I need to survive.

I gave up a job with guaranteed benefits, because my son’s health and wellbeing come first. But I never stopped working. Providing a loved one with round-the-clock in-home care is the hardest job I have ever had. And I’m frustrated that although I work every day, I’m not eligible to pay into FICA and receive retirement benefits based on my work as an IHSS provider. I feel like the work I do is not valued the same as other professions, but I deserve dignity and respect, too.

Teresa S., Kern County parent provider

My daughter Maria is 40 years old, and lives with cerebral palsy. When I learned that as Maria’s home care provider, I do not qualify for benefits like Social Security, I was heartbroken. I try to save money, but home care is not a very high wage career. And it’s not like I can just stop providing Maria with the care she needs. This is my job, and I know her needs best.

I also know that care in an institution would be bad for her.

As I get older, there could come a day when I have to stop working because of my health. If that day comes, without Social Security and Medicare, Maria and I could be left homeless. Our household relies on my income, which means I can probably never stop working. If I do, we will have to rely on friends and family to help us. But that’s not right.

I’ve worked just as long and just as hard as anyone else, and I should qualify for the same retirement benefits and safety net programs as other workers.

Violeta R., San Diego County parent provider When my son Ryan was born with cerebral palsy, I quit my job to become his full-time home care provider. That was over 10 years ago – 10 years that I haven’t been able to pay into Social Security. I’m glad that I will have some retirement security thanks to my old job, but it likely won’t be what I need to survive.

I gave up a job with guaranteed benefits, because my son’s health and wellbeing come first. But I never stopped working. Providing a loved one with round-the-clock in-home care is the hardest job I have ever had. And I’m frustrated that although I work every day, I’m not eligible to pay into FICA and receive retirement benefits based on my work as an IHSS provider. I feel like the work I do is not valued the same as other professions, but I deserve dignity and respect, too.

Teresa S., Kern County parent provider

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 fulltime 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.

Melinda D., Orange County parent provider I provide in-home care for my daughter Jamie who is 28 years old.

Jamie was born with microcephaly, cerebral palsy, epilepsy, and significant developmental delays. I worked a few different jobs until my daughter turned 18, when her medical needs became too much and prevented me from working. I was grateful to find IHSS, because now I can care for my daughter as a paid, professional home care provider. Unfortunately, when I first became an IHSS provider, I didn’t know my FICA deductions would stop, leaving me ineligible for Social Security, Medicare and other benefits.

Now that my husband and I are just about 15 years away from retirement age, I’m very concerned. I’m happy that my husband will receive Social Security and Medicare, but we live in Southern California, and really need full benefits for us both. The work of spouse and parent providers is hard work that should be acknowledged and given the dignity and respect it deserves.

Reyna T., Imperial County spouse provider

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 fulltime 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.

Melinda D., Orange County parent provider I provide in-home care for my daughter Jamie who is 28 years old.

Jamie was born with microcephaly, cerebral palsy, epilepsy, and significant developmental delays. I worked a few different jobs until my daughter turned 18, when her medical needs became too much and prevented me from working. I was grateful to find IHSS, because now I can care for my daughter as a paid, professional home care provider. Unfortunately, when I first became an IHSS provider, I didn’t know my FICA deductions would stop, leaving me ineligible for Social Security, Medicare and other benefits.

Now that my husband and I are just about 15 years away from retirement age, I’m very concerned. I’m happy that my husband will receive Social Security and Medicare, but we live in Southern California, and really need full benefits for us both. The work of spouse and parent providers is hard work that should be acknowledged and given the dignity and respect it deserves.

Reyna T., Imperial County spouse provider

UDW Offices San Diego, UDW Headquarters 4855 Seminole Drive San Diego, CA 92115 Office: 619-263-7254 Toll Free: 800-621-5016 Fax: 619-263-7899

Sacramento 900 J Street Third Floor Sacramento, CA 95814 Office: 916-554-0931 Fax: 916-448-2306

Butte 2555 Zanella Way, Suite B Chico, CA 95928 Office: 530-894-2702 Fax: 530-892-0206

Merced 2935 Business Park Way Merced, CA 95348 Office: 209-386-1120 Toll Free: 866-255-7313 Fax: 209-725-3121

El Dorado/Placer 4220 Rocklin Road, Suite 3 Rocklin, CA 95677 Office: 916-751-2450 Toll Free: 888-228-0837 Fax: 916-751-2460 Imperial 548 Broadway Street, Suite 100 El Centro, CA 92243 Office: 760-425-4034 Kern 1830 Truxtun Avenue, Suite 207 Bakersfield, CA 93301 Office: 661-321-0239 Toll Free: 800-851-7272 Fax: 661-852-0741 Madera 120 North E Street Madera, CA 93638 Office: 559-395-4772 Mariposa 5148 Highway 140, Suite C Mariposa, CA 95338 Office: 209-742-6780

www.udwa.org

WE ALL DESERVE SOCIAL SECURITY AND MEDICARE

Orange 333 Civic Center Drive West Santa Ana, CA 92701 Office: 714-663-1082 Toll Free: 877-483-9937 Fax: 714-663-1052 Riverside 3600 Lime Street, Suite 421 Riverside, CA 92501 Office: 951-786-1300 Toll Free: 866-417-7300 Fax: 951-786-1318 San Luis Obispo/Santa Barbara 402 South Miller Street Santa Maria, CA 93454 Office: 805-349-9656 Toll Free: 877-369-6505 Fax: 805-349�0722 Stanislaus 416 North 9th Street, #I Modesto, CA 95350 Office: 209-526-5274 Toll Free: 866-307-7271 Fax: 209-526-5284

facebook.com/UDW

twitter.com/UDWA

Learn how an unfair exclusion from these benefits is hurting family home care providers