UDW caregivers started 2016 off with a bang. In fact, we made history.

Overtime pay

On February 1st, for the first time ever, eligible IHSS providers began receiving pay for the hours of overtime we work – a right we fought hard to secure throughout 2015.

Throughout the year, we worked with the state to make sure overtime was a benefit for all providers. With our help, the state developed exemptions to the tough new IHSS overtime and workweek rules that helped prevent unfair disruptions in our clients’ care.16043034094_ef299c64df_z

Social Security and unemployment benefits for ALL caregivers

In 2016, we also began our work to win unemployment, Social Security, and Medicare benefits for IHSS providers who care for their spouse or child – an issue that has affected many of us personally, including former IHSS provider Cathyleen Williams from Barstow.

“I was Caleb’s mother, but I was also his home care provider,” wrote Cathyleen in an op-ed in the San Diego Union-Tribune. “Caleb passed away and my job as his home care provider ended, I applied for — and was denied — unemployment.”

With Cathyleen’s and so many other stories to push us, we fought hard to get our sponsored bill, AB 1930, passed through both the Senate and the Assembly. The bill would have convened a committee to look into the financial impact exclusion from basic benefits like unemployment pay has on parent and spouse providers. Although AB 1930 was passed unanimously by the legislature, Governor Brown vetoed it in late September.

“I don’t think I will ever be able to truly put into words the pain of losing a child,” continued Cathyleen. “But I know I want to help lessen this pain for other parent and spouse home care providers who have to navigate the world without their loved one and no social safety net.”

Instead of looking at the veto of AB 1930 as a defeat, UDW caregivers can take solace in the fact that our elected leaders and the public heard us, as we can continue our work to win these benefits in 2017.30582507155_8a77a34884_z

$15, paid sick days, and more

In April, we helped win one of the toughest battles facing working people today – the Fight for $15. Because of rallies, marches, lobby visits at the Capitol, demonstrations and more work alongside other low wage workers, our elected leaders agreed to a plan that will raise California’s minimum wage to $15 by 2022 and give IHSS providers paid sick days.

“This a huge victory for all working Californians, but especially IHSS providers,” said UDW President and our fellow home care worker Editha Adams. “We’ve been denied paid sick leave and a livable wage for far too long.”

We celebrated this amazing achievement, but we also used it as a stepping stone. We know the work of IHSS providers is worth far more than minimum wage, which is why UDW caregivers went All In for Care. At the state level in Orange, Riverside, and San Diego counties, and at the county level in other UDW counties, we will continue to demand respect, dignity, as well as fair pay and benefits for our work at the bargaining table.

Cuts to the IHSS program have a direct impact our caregivers and our clients. The 7% cut to our clients’ hours of care was restored for one year in 2015. In 2016, we also lobbied and successfully urged our elected leaders to restore our clients’ hours for another three years.

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Your IHSS paycheck

As we all know, the current IHSS payroll system is far from reliable. Early this year, UDW caregivers decided that enough was enough. We’re tired of waiting for late paychecks and timesheets, and we’re tired of not knowing if and when we’ll be able to pay our bills.

In May, we testified at a joint Legislative Audit Committee hearing at the Capitol to ask the legislature to approve an audit of the IHSS payroll system. Claire Kaufman, an IHSS provider for her daughter Katie in El Dorado County, was one of the providers who told her story. “Last November, I submitted my IHSS timesheet for the first 15 days of the month and waited for my paycheck,” said Claire. “I waited days and then weeks, unable to get an answer about the delay.” Claire was finally paid just before Christmas in 2015, but her family had to sacrifice their holidays so that she could catch up on their bills.

The committee approved the audit, and we expect to receive the findings in early 2017. UDW will then use them to create legislation that will address and fix the problems with the payroll system.

We didn’t stop at the audit, though, and throughout the year we continued to urge the state to make improvements. Finally, in October, after a lot of pressure from UDW, the state announced it would offer an electronic timesheet option in 2017.

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Election Day 2016

In addition to our UDW fights and victories, we elected a new president in 2016, and despite our feelings – good or bad – about the outcome, President-elect Trump will take office in January. The incoming president, his administration, and the Republican led Congress have all expressed opposition to programs on which IHSS providers, recipients, and working families rely.

The election sets the stage for some major fights in 2017:

House Speaker Paul Ryan has long threatened to cut Medicaid, which provides 55% of the funding for IHSS.

Senate Majority Leader Mitch McConnell said repealing the ACA, which has made an estimated 75,000 UDW caregivers eligible for free or low-cost health coverage, would be “the first item up in the new year.”

The Freedom Foundation

And an anti-home care organization known as the Freedom Foundation has begun targeting UDW caregivers – making themselves a major threat in 2017. The Freedom Foundation tells IHSS providers to quit their union in order to save money. Unfortunately, they don’t tell the full story. As a union, we’ve fought and won big victories, not only this year (see a list of our many victories together here). No one provider could do alone what we do together. The Freedom Foundation wants to weaken strong unions like ours, in order to further their corporate billionaire-backed agenda.

Preparing for 2017

In 2017 we will continue to urge the state to fix the IHSS payroll system once and for all, and we will keep pushing for Social Security, Medicare, and unemployment pay for spouse and parent providers.

It will also be our time to prove that when UDW home care workers stand together, we can fight back against attempts to take our healthcare, weaken IHSS, or weaken us as a union by taking our voice and power. The stakes have never been higher, but we have protected home care and our clients time and time again – if we stand together, next year will be no different.

We look forward to fighting for home care with you in 2017. Happy New Year!img_2728

ihss legislative update photo

This year’s legislative session has come to a close. Here’s an update on UDW’s efforts to secure additional benefits for providers and clients.

Social Security, Medicare and unemployment benefits

UDW sponsored Assembly Bill 1930 as a first step in our work to win Social Security, Medicare, and unemployment pay for spouse and parent providers. The bill would have convened an IHSS Advisory Committee to look into the economic impact life without access to these basic benefits has on providers and our families. Despite unanimous passage by the Assembly and Senate, Governor Brown vetoed AB 1930. We will continue our campaign to win security for IHSS providers.

Retirement savings

Senate Bill 1234 would implement the Secure Choice Retirement Savings Program, giving working Californians the option to have a percentage of our wages set aside in a retirement savings account. IHSS providers were included in the bill, and we are currently waiting on eligibility determination. This bill was signed by Governor Brown, and will go into effect for workers whose employers have 100 employees or more by 2018.

IHSS hours

UDW successfully protected IHSS hours in this year’s budget by securing additional revenue for IHSS. Without this revenue, the hours of our clients would have been cut by 7% starting in July. We will continue to make sure IHSS hours are permanently restored.

SSI/SSP grants for IHSS clients

Assembly Bill 1584  would affect many of our IHSS clients, and would reinstate the annual cost of living increase for recipients of SSI/SSP grants, helping to lift them out of poverty. This bill was vetoed by Governor Brown.

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“It makes you feel like a second-class citizen,” said Claire Kaufman, an IHSS provider for her daughter, Katie, who lives with autism in El Dorado County.

Claire was reacting to Governor Brown’s decision today to veto Assembly Bill 1930. Like nearly 86,000 other parent and spouse providers, Claire was hoping the governor would do the right thing and put providers on a path to securing Social Security, Medicare, and unemployment pay—basic safety net benefits that IHSS providers who care for their child or spouse are currently excluded from.

This year our union UDW sponsored AB 1930, and caregivers shared our stories with legislators at the Capitol, signed petitions, and called our elected leaders, urging them to stand with us on this vital issue. Our hard work paid off: the bill received unprecedented bipartisan support and was passed unanimously by both the State Assembly and the Senate. Once it got to the governor’s desk, we made one last push to get it passed when we delivered petitions signed by thousands of Californians urging the governor to sign the bill.

UDW caregiver Claire Kaufman with her daughters

UDW caregiver Claire Kaufman with her daughters

But today Governor Brown vetoed AB 1930 in spite of our efforts, leaving tens of thousands of spouse and parent caregivers worrying about whether we will ever be able to retire without the supplemental benefit of Social Security. And without unemployment pay, many of us will continue to wonder what would happen to our families if our client passes away.

These problems may sound far off or abstract to some, including the governor, but to home care providers, they are very real.

“Like many home care recipients, a lot of our family members are medically fragile,” said Claire. “I have a six-year-old daughter at home as well. If something happened to Katie, my youngest daughter and I would have to rely on public assistance because I don’t qualify for unemployment.”

Cathyleen Williams from Barstow worked as her son Caleb's IHSS provider until he passed this year

Cathyleen Williams from Barstow worked as her son Caleb’s IHSS provider until he passed this year

Cathyleen Williams from San Bernardino County knows that nightmare firsthand. Her son Caleb passed away this year. When he passed, she not only lost her most precious loved one, but her entire income as well. Cathyleen applied for unemployment benefits because she’d worked as her son’s IHSS provider for nine years. She was shocked when she was denied, all because her IHSS client was her son.

Cathyleen shared her story when she joined UDW caregivers at the Capitol in Sacramento to deliver our petitions urging the governor to sign AB 1930. “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 you don’t end up homeless? I wouldn’t wish this nightmare on my greatest enemy.”

And it is a nightmare. It’s also a source of frustration and confusion for home care providers who know our work is worthy of the same respect and benefits as all other work.

“I’m a single mom who works as a full-time caregiver,” said Jesse Torres from San Diego County. “I take my job seriously. I’ve completed trainings and received certifications to make sure I provide my daughter the best care she can get.”

Jesse’s 12-year-old daughter Cessia lives with Rett syndrome, which causes physical and mental disabilities. To manage Cessia’s condition, Jesse has worked as her full-time IHSS provider for 10 years. “Why am I not eligible for the same benefits as any other mother who goes to her job every day?” Jesse asked. “I could put my daughter in a medical facility or a nursing home that would cost the state more money, and the caregivers there would do the same work but they would get these benefits.”

Despite the governor’s decision today, UDW will continue to make winning Social Security, Medicare, and unemployment pay for spouse and parent providers a top priority. “All home care providers are workers who deserve dignity and respect,” said UDW Executive Director Doug Moore. “Spouse and parent home care providers have worked long enough without access to these basic benefits.”

UDW will keep you updated on our continued work to win Social Security, Medicare, and unemployment benefits for spouse and parent caregivers via our website – www.udwa.org – and our Facebook page – www.facebook.com/UDW.

For Immediate Release

September 30, 2016

Contact: Margitte Kristjansson, 619-548-4304

The governor’s veto of Assembly Bill 1930 leaves thousands of caregivers without vital safety benefits.

Sacramento – Today Governor Brown vetoed UDW sponsored Assembly Bill 1930 despite widespread public support and unanimous passage by both the Assembly and the Senate.

AB 1930 was the first step for In-Home Supportive Services (IHSS) providers who care for their spouse or children to secure Social Security, Medicare, and unemployment benefits. If passed, it would have established the IHSS Family Caregiver Benefits Advisory Committee to study the financial impact exclusion from these benefits has had on the estimated 86,000 home care workers who currently go without.

“It is unfair that as home care providers we commit to caring for children and adults with disabilities as well as seniors, but we’re left out of the safety net benefits all workers need,” said Cathyleen Williams, a former IHSS provider from San Bernardino County.

Cathyleen’s son Caleb passed away this year because of a congenital heart defect known as hypoplastic left heart syndrome. However, because Cathyleen was her son’s IHSS provider, she was denied unemployment pay, leaving her struggling to make ends meet. “We can’t give up this fight. I don’t want any more parents or spouses to go through the nightmare I’ve been through,” she continued.

In addition to working without access to unemployment, many parent and spouse providers worry about their financial futures without Social Security and Medicare. “I worry about my husband who is 62 years old with a bad back,” said IHSS provider Roxanne Bender from El Dorado County who provides care for her 39-year-old son Jacob who was born with a brainstem defect. “Since we can’t rely on full retirement security, he will likely have to work until his body falls apart. I can’t imagine that I will ever retire either. I will likely have to work the rest of my life to make ends meet.”

AB 1930 was authored by Assemblymember Tom Lackey (R – Palmdale) and coauthored by Assemblymember Lorena Gonzalez (D – San Diego) and Senator Mike McGuire (D – Healdsburg). Although the bill was vetoed, it successfully shed light on the fact that many family caregivers work without access to the same benefits as other working Californians.

“We are disappointed, but not deterred by the governor’s decision to veto Assembly Bill 1930,” said UDW Executive Director Doug Moore. “All home care providers are workers who deserve dignity and respect. We are thankful to the bill’s authors for assisting us in this fight – and especially to the principal author Assemblymember Lackey for his strong support. Spouse and parent home care providers have worked long enough without access to these basic benefits, and UDW will continue to make securing them a top priority.”

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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.

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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.”

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Susana Saldana from Merced works as her son’s IHSS caregiver

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.”

Cathyleen Williams from Barstow worked as her son Caleb's IHSS provider until he passed this year

Cathyleen Williams from Barstow worked as her son Caleb’s IHSS provider until he passed this year

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.

by Mark Miller, New York Times, July 15

Jana Panarites, left, and her mother, Helen. The years she spent caring for her mother will mean an estimated 20 percent reduction in her Social Security income.

Jana Panarites, left, and her mother, Helen. The years she spent caring for her mother will mean an estimated 20 percent reduction in her Social Security income.

Jana Panarites was about to make a midlife career shift in 2010 when her father died. At age 50, she had completed a master’s degree in cultural diplomacy at the University of Southern California and was looking for a position in the nonprofit sector. That plan ground to a halt when she moved back to Maryland, where she grew up, to take care of her mother.

“Like a lot of caregivers, I had no idea what I was getting into,” she said. “I wound up spending so much time taking care of her, there was no time to take care of myself, let alone produce an income.”

Ms. Panarites has no regrets about the three years she spent caring for her mother, who now lives in an assisted-living facility in Florida. On the contrary, she said, “it’s one of the most important things I’ve ever done.”

But the detour damaged not just her career prospects but her future retirement security as well. Her annual Social Security income — projected at $18,500 if she files for benefits when she reaches full retirement age in 2026 — will be at least 20 percent less than she could have expected had she not left the work force, according to a rough estimate from the Social Security Administration.

A growing number of legislators and policy makers would like Ms. Panarites and other caregivers to receive some relief as part of a broader effort to expand and modernize Social Security benefits.

Until recently, all the talk in Washington regarding Social Security was about cuts. But a grass-roots progressive coalition began campaigning for expansion nearly three years ago, and it has succeeded in moving the concept to the center of the Democratic Party.

Expansion was a popular theme of Senator Bernie Sanders’s presidential campaign; now Hillary Clinton has moved into the expansion camp, saying she would support higher benefits for caregivers and widows and widowers.

Advocates were also elated recently when President Obama endorsed improving benefits. That was a shift from his earlier support for limited cuts at a time when he was hoping, in vain, to reach a grand fiscal bargain with Republicans in Congress.

“We can’t afford to weaken Social Security,” Mr. Obama said in a speech on June 1. “We should be strengthening Social Security. And not only do we need to strengthen its long-term health, it’s time we finally made Social Security more generous, and increased its benefits so that today’s retirees and future generations get the dignified retirement that they’ve earned.”

“Like a lot of caregivers, I had no idea what I was getting into,” said Jana Panarites, with her mother, Helen.

“Like a lot of caregivers, I had no idea what I was getting into,” said Jana Panarites, with her mother, Helen.

“Like a lot of caregivers, I had no idea what I was getting into,” said Jana Panarites, with her mother, Helen.

The changing political winds have emboldened those who say that fears that Social Security will go bankrupt are overblown.

“I’m delighted people are arguing for expansion,” says Alicia Munnell, director of the Center for Retirement Research at Boston College. “I’ve always been against cutbacks, so now I’m in the center of the debate.”

More than 20 expansion bills have been floated by lawmakers, with proposals ranging from targeted increases for vulnerable retirees to larger increases in benefits for all retirees. At the same time, many of those pushing for increased benefits support dealing with Social Security’s long-range imbalance by making cuts elsewhere and raising revenue to pay for both expansion and by closing the financing gap.

The combined trust funds for Social Security’s retirement and disability benefits are projected to be depleted in 2034, according to the annual report of the program’s trustees. At that point, Social Security itself would have sufficient revenue from current taxes to pay only 79 percent of promised benefits.

That problem could be avoided if Congress agreed to raise additional revenue, impose benefit cuts or do some combination of the two.

Some targeted expansion recommendations come from centrist camps. For example, a recently issued report on retirement security by the Bipartisan Policy Center called for adjusting Social Security’s progressive benefit structure to deliver higher amounts to lower-income retirees. The changes would increase benefits by $176 a month to the median recipient who files at full retirement age — an increase of 10 percent on a $1,700 benefit.

The policy center called for lifting Social Security’s minimum benefit for very-low-income seniors, and enhancing the program’s survivor benefit. Currently, widows and widowers receive either their own benefit or 100 percent of a deceased spouse’s benefit, whichever is higher; under the B.P.C.’s proposal, survivors would receive their own benefit plus 75 percent of their deceased spouse’s benefit.

At the same time, the center recommended two across-the-board benefit cuts: gradually raising the normal retirement age and adopting a less generous annual cost-of-living adjustment.

“We’re really trying to show solutions that can emerge when you put people with very different ideological perspectives in a room and let them negotiate for two years,” said Shai Akabas, director of fiscal policy at the center.

As for caregivers like Ms. Panarites, some proposals would help bolster their retirement income by giving them extra credit for years devoted to taking care of a parent or child in need. Social Security benefits are determined by a formula based on the average of a worker’s highest 35 years of lifetime earnings.

Ms. Panarites and her mother at the assisted-living facility in West Palm Beach. A growing movement seeks to expand Social Security benefits for caregivers.

Ms. Panarites and her mother at the assisted-living facility in West Palm Beach. A growing movement seeks to expand Social Security benefits for caregivers.

Ms. Panarites and her mother at the assisted-living facility in West Palm Beach. A growing movement seeks to expand Social Security benefits for caregivers.

Ms. Panarites’s earnings peaked at $75,000 in 2006, before she left a job as a paralegal to pursue her master’s degree. Her income has been negligible since 2008, although she has since started a career as an author and podcaster focused on the issues facing caregivers.

“Your 50s are supposed to be your peak earning years,” said Ms. Panarites, now 56.

Her lost lifetime Social Security benefit could easily top $125,000 if she lives to roughly 89, the expected longevity for a woman who reaches age 65.

“When people decide to leave the work force to do caregiving, they usually think, ‘It will be just a couple years, and I can get by,’ but they don’t think of the implications 20 years later when they want to retire,” said Gail Gibson Hunt, president of the National Alliance for Caregiving.

Meanwhile, progressives who started the expansion movement are thinking bigger.

“The real question is whether you expand Social Security across the board, so middle-class workers get an increase, or you don’t,” said Nancy Altman, co-director of Social Security Works, an advocacy group. “Then, you can argue about how big to make the increase.”

Expansion would mitigate the erosion of benefits put in motion by the last major Social Security overhaul, enacted in 1983, which gradually raises the full retirement age from 65 to 67, effectively reducing, by 25 percent, the amount of preretirement income replaced by benefits.

How would the government pay for Social Security expansion, while also helping close its solvency gap?

The main vehicle would be through changes in the payroll tax on salaries and wages, which now collects 12.4 percent — equally split between employers and employees — up to a cap, currently set at $118,500.

An option would be to raise the tax rate gradually. The Bipartisan Policy Center recommends raising the payroll tax another 1 percentage point, spread over 10 years.

Others favor permitting Social Security to invest a portion of the trust fund in equities. By law, trust fund reserves must be invested in special-issue Treasury bonds that pay very low rates of interest. Some proposals call for allowing investment of 40 percent of reserves in higher-return equities, which could close about one-fifth of the long-term shortfall, according to Stephen C. Goss, chief actuary of the Social Security Administration.

The revenue solutions ultimately will depend on the breadth — and cost — of any expansion.

“Most of the expansion proposals have been modest,” Mr. Goss said. “People understand we have a shortfall to deal with, and across-the-board bumps get expensive.”

Read more.

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.

christine

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.

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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.

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

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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.

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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.

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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.

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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.

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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.