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A rally celebrating the signing of the state’s paid family leave law in 2016.

Ms.King had noticed something off about her mother for a few weeks. After some protest, in the summer of 2016, King convinced her mother, then 86, to let her drive her to a Doctor’s appointment.

Her mother had lived in a Queens home she owned for 54 years, the last 10 as a widow, but King was beginning to suspect her mother needed someone looking after her. Getting her mother to admit she needed help was difficult; she grew up during the Depression and was averse to it.

“Even if she were very ill, having a limb hanging off, her response was always, ‘I’m doing fine,'” she says of her mother. (King wanted neither her first name nor her mother’s name used to protect her mother’s privacy.)

When the day of the appointment arrived, King, who lives a few miles away on Western Long Island, felt an urge to arrive early.

At the moment she arrived at the door of her mother’s home in Queens, her phone rang– her mother’s medical alert bracelet had gone off. When King entered the house, she found her mother unconscious on the floor. She had suffered a stroke and fallen. To this day, no one is sure how long she was there. King called an ambulance – her mother would spend the next two months in a rehab center, the longest amount of time she’d spend out of her home.

When she was able to return home after rehab, King’s mother was told she could not be left alone in the home. Walking for her was difficult and she was a fall risk. Getting around her two-story home alone was too risky. She would likely need around-the-clock help. But King’s mother was uncomfortable with having strangers in her home. While serving on the board of her senior center, King’s mother heard stories about elder abuse and neglect that troubled her, and King wanted her mother to be at ease.

An only child who couldn’t face the burden alone, she decided to bring in home health aides she had chosen through personal references. For the first year her mother was at home, King paid home health care workers off the books and out of her own pocket while she waited to be approved through New York State’s Consumer Directed Personal Assistance Program, or CDPAP.

King, who is 64 and works part-time as a legal assistant, spent the next year and a half learning to navigate a byzantine system of Medicaid and Medicare to be personally involved in her mother’s care. She made it through with the help of a lawyer, but found the process exhausting.

“It’d be like going to a foreign country that you don’t speak the language,”King says.

The caregiving crunch

AARP estimates that 40 million Americans act as caregivers to a family member, and estimated the economic value of this work to be $470 billion in 2013. This includes direct or primary caregivers – those who personally take on the day to day health and hygiene needs of their loved ones, and indirect caregivers like King, who handled her mother’s finances, Medicaid applications, hired and managed home health aides and advocated on her behalf.

Twenty-four million of these caregivers are also working a paying job, according to the report, and two in three of those working caregivers are caring for an adult over age 65.The average loss of benefits and wages for a family caregiver over the age of 50 is estimated to be $303,880 over the lifetime. Studies have shown links between family caregiving and late life poverty.

Adult children taking care of frail parents in New York State can receive support through a state Medicaid program, but navigating the system can be daunting. Often, those saving up for retirement themselves are hit with painful out of pocket expenses as they deal with gaps in coverage, a reality of the baroque rules, delays and partial privatization of eldercare in New York State.

There are pockets of relief: Those who need to take time off from work to care for family members have been helped somewhat by the Paid Family Leave Act, which was passed in 2016, and which officially went into effect in January 1 of 2018. The law, which will be phased in over four years, currently mandates ten weeks of paid leave from work within a 52-week period to care for a family member who has fallen ill or spend time with a newborn child, and will reach 12 weeks when fully phased in by 2021. Employees receive a percentage of their wages – currently 55 percent and reaching 67 percent in 2021. The maximum payout is tethered to New York’s average weekly wage, so it will be capped 55 percent of that wage, or $746.41, in 2019.

Many family caregivers who have used Paid Family Leave use it as a bridge between an emergency and longer-term care under Medicaid. The Medicaid program, New York State’s Consumer Directed Personal Assistance Program, or CDPAP, is a 32-year old state Medicaid program that allows the person receiving care to choose who their caregiver will be. This program was restructured to include privately managed care in 2011 by Governor Cuomo, an effort to cut Medicaid fraud. But managed care providers are tasked with approving the number of hours patients receive, rather than the government, and often undersell a patient’s infirmity to cut costs – even after class-action lawsuits and numerous investigations over the past six years.

King secured a eldercare lawyer and through the help of advocates and generous strangers was able to navigate the system. When her mother became bedridden, she eventually felt she had no choice but to move her into a skilled nursing facility, utilizing Paid Family Leave to take time off for the difficult transition. She’s happy with the help she eventually received from CDPAP, but wants others to know how challenging the system is to navigate.

“People need to know that this is harder than it seems,”King says.

Tallying up the costs

The costs of caregiving for a family member who needs full-time care can be life-altering. Joanne Lynn, Director of the Program to Improve Eldercare at Altarum, a nonprofit research center in Michigan, views this as a failure to adequately fund the full cost of caregiving.

“Some countries pay caregivers. We don’t,”Lynn says bluntly.

She estimates that 24-hour care for a single person – taking into account two shifts, working five days a week, weekends, overtime and benefits – can cost up to $200,000 a year. And that is not taking into account unexpected hospital stays and expensive medications.

King paid for home-health aides out of pocket for a year before she was approved for Medicaid’s CDPAP. All told, she says she paid between $35,000 to $40,000 dollars of her own money during this period for her mother’s care. When she was approved for CDPAP, she continued to pay out of pocket to make up the difference between what she had been paying and what Medicaid offered to pay her home health aides, which she says she did out of principle and to keep her aides happy. High costs and loss of savings are normal for caregivers: AARP reported that 78 percent of family caregivers incurred out of pocket expenses in 2016, averaging $7000.

Then there’s the impact on careers of those who work full-time but must see to the care of a family-member. AARP and the National Alliance for Caregiving found that intensive caregiving for a family-member can lead caregivers to reduce their work hours or even retire earlier than they otherwise would—choices that can lead to a loss of retirement savings, benefits and career opportunities, according to the report.

“You shouldn’t ever have to choose between your job and caring for your loved ones,”says Andrea Cianfrani, Director of Public Policy at LiveOn NY, an advocacy group for older New Yorkers.

A reality for a lot of families is that the daughter or wife ends up taking up the role of caregiver, says Katelyn Hosey, a policy associate at LiveOn NY. Often they are caregiving on both ends of the spectrum, she says – dealing with an ill mother or father while also caring for young children. Half of employed caregivers are over the age of 50. In California, Paid Family Leave claims for caregiving between 2005-2014 were highest for employed women between the age of 45 and 54.

“That’s incredibly difficult financially, incredibly difficult emotionally, physically,”Hosey says. “It’s important to recognize that caregiving is in many ways a women’s issue and something that women truly across the state are experiencing silently in many cases.”

The U.S. is the only industrialized nation without any national paid family leave laws, according to the OECD. In 1993, Bill Clinton signed the Family Medical Leave Act, mandating up to 12 weeks a year of unpaid, job-protected leave for employees dealing with a serious illness or caring for a sick family member or a new child. But in the two decades since the law passed, the legislation has not been strengthened, and advocates say it falls far short of worker’s needs. Most who use it are not caregivers: 55 percent of those who use it do so to deal with their own illness, 21 percent for a new child and 18 percent for a sick parent or spouse, according to a 2012 study.

Half of caregivers surveyed who needed family leave but didn’t take it cited the lack of pay, and two thirds of those who took it said they experienced financial hardship during leave, according to a2017 report from the Transamerica Institute. The law does little to change the precarity of caregiving, as 75 percent of caregivers receive no compensation for their caregiving duties. Lack of awareness also persists: One in four caregivers are not aware FMLA even exists, the report states.

New York’s paid leave

Governor Cuomo signed New York’s Paid Family Leave Act in 2016, after versions of the bill remained in limbo for decades. Assemblywoman Catherine Nolan, of District 37 in Queens, first proposed a version of the legislation in 1997. It was approved by the Assembly eight times over the next two decades but was never voted on in the Senate, something the Assemblywoman noted when it was finally introduced into Cuomo’s budget.

New York is now one of six states (and the District of Columbia) that have Paid Family Leave programs, although 10 states mandate paid sick days that cover family caregivers, offering between 5 and 10 days off, according to AARP.

New York’s Paid Family Leave is funded through disability insurance, similarly to to New Jersey, Rhode Island and California. These states all add family leave to existing Temporary Disability Insurance, which is designed to pay a share of wages to sick workers. In all four of these states, employees fund this insurance through a payroll tax, which means a portion of every privately employed New Yorker’s income goes toward the costs of Paid Family Leave. Employers can self-insure, as well, following requirements laid out in the law.

The three newest Paid Family Leave jurisdictions—D.C., Washington and Massachusetts—have no disability insurance programs to augment, and divide the cost in other ways. In D.C., where paid leave won’t begin until 2020, employers will pay the costs. Washington state and Massachusetts, which will roll out their paid-leave programs in 2019, have a dedicated insurance program funded by both employer and employee. Advocates say that while employer contributions would be ideal, New York’s deductions are still relatively low, at 0.12 percent of wages and capped at an annual maximum of $85.56 in 2018. Per weekly paycheck, this amounts to around $1.60 for the highest earners.

Another key component of New York’s law is its job protections, which mandate that an employee must be allowed back to their job after taking leave. Experts say this important component is crucial because many New Yorkers are reluctant to take time off for fear of retaliation. Along with New York, Rhode Island, Massachusetts and Washington State provide these protections, but California, New Jersey, and D.C. do not. Nearly half of Rhode Island residents taking PFL said they wouldn’t have done so if not for job protections, according to a study from the state. Lynn Feinberg, a policy advisor at AARP, expressed hope that a federal law would eventually reinforce these protections nationwide.

Like other programs, New York’s PFL benefits can be used intermittently – meaning that employees can take days off at random for up to 10 weeks in 2019. King used the PFL on and off, she says, totaling 10 days of Paid Leave since she began using it in October of 2018.

The states’ paid-leave laws differ in terms of how they define family. New York’s law permits care for children, parents, in-laws, spouses and domestic partners but excludes siblings, which troubles some advocates. Washington State and California permits siblings as well as in-laws, the broadest coverage of any state. And the law only covers private employees, although public employers can opt in or, in the case of unionized workplaces, can have PFL as part of a collective bargain.

Good help, timing can be issues

Anecdotes from caregivers using PFL for ailing family members are mostly positive, although for some, the law was insufficient. At Sunnyside Community Services, clients who took part in PFL mostly used it as a bridge between a traumatic event and Medicaid’s CDPAP.

Katie Hine, Director of Care NYC at Sunnyside Community Services, says that one of her caregiver clients had tried to apply for Paid Family Leave when his 83-year-old mother was in rehab after her health deteriorated suddenly, leaving her immobile. He was looking for a long-term facility to move his mother into. As Hine worked with the client on finding an assisted-living situation, he tried to take three weeks of paid family leave while clearing out his mother’s apartment.

“It was a lot of anxiety getting it all sorted out,”she says. but once he submitted a doctor’s note and got approval from his employer, he received the three weeks he needed. He helped his mother move into an assisted living facility and, Hine says since then the client has been in a good place.

Another caregiver client Hine had last year was caring for his wife who had dementia. He was working full-time at an overnight job and there was no other family available to help. Sunnyside provided temporary respite care to help out while he applied for Medicaid’s CDPAP. Because his finances were complicated by debt, it wasn’t clear if his wife would qualify for Medicaid. Hine says he did use Paid Family Leave, but the amount of time offered—eight weeks in 2018—was not enough to bridge the gap while he tried to secure Medicaid, a process filled with delays can take six months or longer.

“It illustrates the limits of the service, especially for a family member who has dementia,”Hine says. While New York’s law is now 10 weeks long and will be 12 weeks by 2021, it’s still insufficient for longer-term illness like dementia.

Jed Levine, CEO of CaringKind, an Alzheimer’s and dementia care center in New York, says this may be why he has not had many calls about Paid Family Leave in the past year.

“Part of it is that I think people might see (the law) as for more acute caregiving,” Levine says, like a surgery or to accompany a family-member to chemotheraphy or other appointments. The demands of dementia caregiving are profound and exhausting, he says, and beyond the scope of what this law can help with.

Providing some pay, but maybe not enough

While advocates are happy to see the arrival of paid family leave, Joanne Lynn at the Program to Improve Eldercare says that while providing paid leave is a first step, the pay cap is too low for the overall demands of caring for an elder who needs constant care.

“That’s not generous,”Lynn says of New York’s paid leave. “But it’s a start. It’s an acknowledgement of the role of caregivers”

For some, being granted 50 percent of pay is not affordable.

U.S. Senate

Senator Kirstin Gillibrand plans to soon announce reintroduction of the FAMILY Act, which would require 60 days of paid leave a year.

King says that because she had savings, she was able to take days off from work. While pay rates under New York’s Paid Family Leave are on par with most other states, it—like most other programs–does not address the issue of income inequality.

In California, a study found that 10 years after PFL was introduced it was less likely to be used by lower-income households. To address this, California began paying 70 percent of wages to the lowest-income workers in 2018, an increase from the flat 55 percent rate across income strata that had existed prior. Experts who spoke with City Limits say it’s possible that such a policy could be added to New York’s Paid Family Leave if similar issues arise.

Others have raised flags about paid family leave programs whose requirements reinforce race and class disparities. A Pew Study found that those in the lowest income bracket are already the least likely to have paid leave through their jobs. A paper by the National Partnership for Women and Families points to eligibility requirements for Paid Family Leave like a dollar amount threshold as discriminatory to low-wage workers, for obvious reasons. New York’s law requires 26 consecutive weeks of employment to qualify for full-time workers, and 175 working days for part-time employees. For comparison, Rhide Island requires an employee be paid at least $12,600 before benefits kick in.

Uptake lagging?

While data on PFL in New York is not yet available, AARP data gauging Paid Family Leave programs nationwide provides some preview of how it may pan out here.

In California, which rolled out Paid Family Leave in 2004, only 12 percent of claims were for family caregiving, while 88 percent of cases were for those caring for newborns. In New Jersey, 18 percent of claims were for caring for a family member. In Rhode Island, family caregivers were 23 percent of overall claims. Feinberg says Rhode Island’s high number of claims may be due to Rhode Island’s stronger job protections, a sign that New York may also see a similar percentage.

Caregiver programs contacted by City Limits for this article all reported that they received fewer inquiries than expected about how to use Paid Family Leave, though all include it in their training. Some speculated this was because the process is more straightforward than Medicaid—and therefore people had fewer questions to ask—and others suggested the program was too new and there was a lack of awareness.

“Often when you talk to workers, they just are still unaware that this benefit is there,”Feinberg says. She says she’s pleased to see Paid Family Leave ads on the subway, but says that employers need to take a lot of responsibility to raise awareness as well as the healthcare community. Research on PFL in California, New Jersey and Rhode Island shows about half the population is aware of their PFL law, and that lack of awareness was the biggest impediment to use. And research on New Jerseys PFL law showed that awareness was lower in low-income households.

Cuomo, to his credit, has rolled out a comprehensive and user-friendly website for New York’s Paid Family Leave as well as a toll-free hotline. And employers are required to post information about the law in their workplace.

Maria Hunter with NYLAG speculated employees may be put off by the cut in pay, and that New York’s cost of living could create an especially heavy burden, with most caregivers paying a large portion of their paychecks to rent.

“Taking half a salary is not an option for a lot of my clients who are in housing court and have so many other issues,” Hunter says.

And there is a possibility that even with job protections, New Yorkers could fear reprisal. In the past, Hunter says she has had to assist clients whose employers contested their eligibility for FMLA, the unpaid federal program that has existed since the 90’s. As PFL becomes more widely adapted, it’s likely that more complaints will arise.

For family members who need long-term caregiving, Paid Family Leave will not suffice, nor is it designed to. “In general, long-term care needs come up after some kind of trigger or illness,”says Maria Hunter, Director of the Public Benefits Unit at New York Legal Assistance Group. “Where (Paid Family Leave) would intersect is more where there’s some kind of triggering event,”she says. A person paying for long-term care insurance likely won’t be able to access it quickly—and the Medicare and Medicaid processes are complicated and time-consuming.

Thinking beyond family

There is renewed energy on the national level for Paid Family Leave. Senator Kirstin Gillibrand plans to soon announce reintroduction of the FAMILY Act, which would require 60 days of paid leave a year. An earlier version was introduced in 2013, but little came of it.

As King went through challenges managing home health aides for her elderly mother, she felt the burden was unduly placed on her to do so as an only child. But for many seniors, even a single adult child who is a drive away on Western Long Island is a resource they don’t have.

The reality is that not everyone will have either the time, energy or relationship with their parents that will allow them to be full-time caretakers, let alone adequate training to perform that role. And many don’t have adult children to care for them, let alone children who live nearby.

“We need to reexamine the presumption that caregivers can all be volunteers and family-members,”Lynn says. To ask someone, Lynn says, who experienced abuse during childhood or strained relations to care for an elderly parent is”pushing it,”Lynn says.

At SAGE, an advocacy organization for LGBT seniors, the reality of not having a child caregiver has been deeply felt, according to Teresa Theofino, Assistant Director of Care Management. “The vast majority of my clients never had children,”she says. At a support group that she facilitates, many of those acting as caregivers to LGBT friends and family wonder if they themselves will have anyone to turn to for help when the time comes.

“We really count a lot on chosen family connections in LGBT communities to hold each other up,”Theofino says. One thing she suggests is guardianship – a legal classification which puts an elder under the care of a friend or family member they designate. But this too is a messy ordeal, she says, a last resort when someone cannot handle their own affairs. Once someone enters guardianship, she says, it is difficult to change guardians, and to leave guardianship altogether is incredibly difficult.

For this reason, policy analysts recommend stronger programs that don’t just lean on family-members who have the job stability, savings and relationships to change careers to full-time caregiver, and instead invest in strengthening a system of home health aides with stronger subsidies and higher pay. Salaries for home aides have traditionally been low.

“Families today can’t do it all on their own,”Feinberg says. “Most are in the labor force juggling work and caregiving, we need to have robust policies in our country that allow healthcare workers to have this shared responsibility in caring for an older population.”

The coming reckoning

Lynn says a reckoning with how we compensate caregivers – be they family-members or home health care workers—is a long-delayed conversation and one we should have now, before a crisis in aging forces us to. By law, in 2019 Home Health Aides are now covered by the statewide minimum wage of $15. According to Glassdoor, the average base pay of health aides in NYC last year was $25,000.

To advocates, the low pay of home health aides reflects on how family caregivers are valued as well. CDPAP paid home health aides and family caregivers an $11- to 13 an-hour base pay last year, prior to the minimum wage increase. That was despite the fact that direct caregiving is a physically and emotionally strenuous job, one which requires patience and the ability to safely lift and transport a human weighing hundreds of pounds.

“We haven’t thought it through as a society,”she says. “We should learn to develop political language rather than wait for the real rise in the aging population,”she adds. “If we wait, we’ll be shocked,”she adds.

Part of this reckoning may be public education, the ability to get people to think about retirement, savings, and the massive costs involved. Maria Hunter, the NYLAG Elder Care lawyer, says that for most people, long-term care needs are simply not well planned-for.

“There’s a misunderstanding about how much long-term care you can get through Medicare,”she says, and many are surprised that they must spend down to access Medicaid as well.

She also advises that elders prepare for their own care in other ways. In addition to a will, they can grant loved ones power of attorney, making sure to specifically outline that your loved one is permitted to take care of health on your behalf. This can make the process of applying for Medicaid or Medicare faster, as caregivers often find themselves locked out of important documents they might need to care her their loved one.

But Lynn believes if we don’t create better systems to fill in the gaps, it will have federal implications. “We need whatever we can engineer so it doesn’t all hit Medicaid,”she says.

Ultimately, the issue is wages—not just those of home health aides, but of all workers: If people aren’t being paid enough to save up money for retirement, or if they’re not provided pensions or the chance to make contributions to retirement accounts, then all of those costs hit Medicaid sooner or later, causing a national crisis.

“It seems unlikely it’s good policy that people are coming to their own retirement with no savings,”she says.

She says workers should learn to develop a “political language”in which family caregivers and home health care workers see their fates as linked, and the financial impact of these low- or no-paying jobs on the economy is reckoned with.

“The saying goes, there are three kinds,”Lynn says, “Those who will need caregiving, those who have received care, and those who have been caregivers,”and few people reach the end of their lives without being in one of these categories, if not all three.

King says she’s still smarting from being a caregiver and navigating the system. Her mother is still enrolled in the Managed Long Term Care provider though she is now in a nursing home, and receives care from some of the aides she had in her home. Even in this part of the process, King was heavily involved, visiting 13 nursing homes and communicating with her mother constantly. She joined a support group at Sunnyside Community Services and finds solace in her faith community, with whom she leads spiritual retreats, which she had less time to do while navigating Medicaid.

Overall, she believes her struggle with the system was not in vain. “It’s well worth it, it maintained my mother’s dignity,”she says. But talking about it still gives her the chills. “I have served my mother since she has been in this need diligently,”she says. “And I’m still serving her. But I know my limits.”

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Support for this article was provided by Rise Local, a project of New America NYC.