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India Currents gave me a voice in days I was very lost. Having my articles selected for publishing was very validating – Shailaja Dixit, Narika, Fremont
In 2005, Tahera Khalil suffered a heart attack while visiting her daughter Nishrin in California. Worried that she could not care for her aging parents if they returned to India, Nishrin urged them to remain in Santa Clara County.
Almost 18 years later, Tahera and her husband Sabbar live independently in a condo at the Villages, a senior living facility in Evergreen, less than 3 miles from Nishrin. Now 95, Sabbar suffers from macular degeneration as well as from radiation side effects after a bout with cancer. As his eyesight fades, he’s increasingly dependent on his wife. Sabbar is not sick enough to need nursing-home-level care, but his care needs are increasingly complex.
At 88, Tahera is his primary caregiver. She relies on help from Nishrin and the extended family to manage Sabbar’s needs. In immigrant families like the Khalils, the cultural norm is to age in place in a multigenerational setting. But it’s increasingly challenging for the Khalils to do that. They cannot afford private in-home caregivers, nor do they want to move Sabbar to a skilled nursing facility that lacks culturally congruent care.
When Tahera and Sabbar Khalil decided to stay in Santa Clara 17 years ago, they did not anticipate the consequences of growing old in a country without universal healthcare.
Middle-income, immigrant families like theirs often do not qualify for government-supported home care, nor can they afford the exorbitant cost of hiring caregivers who cannot guarantee quality service. So, as aging takes its toll on family seniors, unpaid family members fill the caregiving gap, performing complicated tasks without support or training, and placing their health, finances, and well-being at risk.
This trend reflects a nationwide exigency. As people age, a higher prevalence of chronic diseases – ranging from arthritis and chronic pain, to hypertension, diabetes, and dementia, will fuel the demand for support services. The Department of Health and Human Services (DHSS) estimates that at least 70% of people over 65 will need some type of long-term care support in their remaining years, as declining cognitive and physical health impairs their ability to function independently.
In Santa Clara, the county delivers home-based services to older low-income residents through MediCal (California’s Medicaid entity). But the county faces a workforce shortage that makes aging in place challenging, especially for Americans who live longer with chronic conditions, fewer family caregivers, and shrinking savings.
In California alone, the Public Policy Institute of California predicts that over one million older adults in the state will face difficulties with self-care by 2030.
If that estimate proves true, the study concludes that Santa Clara County may have as many as 52,000 older adult residents who will require some form of long-term care. But the county lacks the infrastructure, manpower, and funding allocated to fully support its rapidly increasing senior population. Santa Clara County’s quandary is a microcosm of what’s happening across the nation.
Intergenerational Care, Duty & Honor
In immigrant families caring for aging parents is an ingrained cultural value of duty and honor. In the Khalil household, strong emotional and cultural ties to India also shape religion, food, and family relationships. Nishrin shares a close bond with her mother, “her rock and best friend!”
In addition to Tahera, Nishrin, her husband Khaled Hasnat, and her brother Nazir, form an extended family circle that cares for her parents. They mirror a trend across the nation reported by AARP, where 1 in 5 Americans provide intergenerational caregiving for aging parents.
The NIH defines ‘intergenerational caregiving’ as the hands-on caregiving undertaken by adult caregivers for their aging parents. In the U.S., that adult caregiver pool now stands at 41.8 million.
This family dynamic is the norm in many immigrant households in the U.S. A Pew study from 2021 reported a growing trend – a higher share of foreign-born Americans (for example, 24% of Indians and 26% of Hispanic immigrants), were more likely to live in a home that includes grandparents. Nearly 59.7 million U.S. residents were living with multiple generations under the same roof, the study reported.
This intergenerational setting works as long as seniors in the household are fit and able. But as older family members fall ill or require assistance, very rarely do immigrant families place them in care homes or assisted living facilities. Instead of institutional care, adult children prefer to help parents age in place with the support of community-based services and the extended family network.
Looming Gaps In Care
To age in place in Santa Clara County, the Khalils need assistance with activities of daily living. The AARP defines this as bathing and dressing, instrumental activities such as managing finances or providing transportation, or medical and nursing tasks such as medication management or preparing special diets.
But recent studies show that the county faces looming gaps in providing home-based services for its rapidly aging and ethnically diverse population. Almost 40% of its residents are foreign-born.
In Santa Clara County where the Khalils live, eligibility limitations, high costs, and a trained caregiver shortage woefully undermine the home-based services it can deliver to older residents. So ethnic minority families like the Kahlils, face a caregiver crunch that curbs independent living.
Aging expert Bob Brownstein of Working Partnerships, which assessed the County’s health services program, says, “In Santa Clara County there’s going to be very few people who are going to be receiving long-term care through Medicare. Some very affluent people are able to pay for it. But really what happens for people who are middle income is they spend on their assets to become eligible for Medicare.”
The challenge with long-term care, says Brownstein, is that life expectancy is going up, but the number of people who cannot care for themselves and older people with chronic diseases is also rising. This population can live comfortable lives if they get decent, long-term care, “But the political system hasn’t gotten there to be able to treat that with the urgency that it needs.”
Families Step in to Provide Care
In the Khalil household, Tahera drives Sabbar to Nishrin’s home every day to enjoy family mealtime. The family unit is integral to their well-being.
“We’ve made it a point to have at least have one meal a day together,” says Nishrin.
But this cherished routine is under siege, as Sabbar’s aging and illness undermine their independence.
“In the last one or two years, he’s got macular degeneration, so he’s not able to see well.” Tahera’s voice softens with worry. “That causes much more anxiety. But we have to manage these sorts of things.”
Nishrin says her father’s mounting anxiety makes it difficult for her mother to leave his side.
“She fully takes care of daddy. I am around of course, but she is definitely the caretaker. So, it’s a lot on her.”
Tahera recently had a pacemaker fitted. With Nishrin’s help, she continues to manage the cooking and housework. She is resolute. “I can take care of myself and my husband. We do have in-home supportive services to help us out a little bit with cleaning.”
Their home-care aide provides 50 hours of cleaning a month, but it’s not nearly enough for the care Sabbar requires.
Nishrin comes in daily to help her parents out. A few months ago, her widowed father-in-law Abul Hasnat, moved into her house. Yet, Nishrin’s culturally ingrained duty of care keeps her committed to helping her parents and in-law age in place.
The squeeze of sandwich generation caregiving is tightening for Nishrin just like it is families across an aging nation.
America is Graying
The reality is America is graying. Nearly one in four Americans will be 65 years and older by 2060, reports the Census, an age group that will reach 40 million by 2040. Seniors 85 and older – the group most often needing help with basic personal care – will nearly quadruple between 2000 and 2040, according to an Urban Institute study.
In California, Working Partnerships identified Santa Clara County as one of six counties expected to have the highest growth in its older adult population. Eighteen percent of its 1.9 million residents are older than 60. This age group, currently at 339,000 residents, is predicted to triple to one million by 2030. More than 58% (1,16,5802) of the county’s residents are non-white, speaking languages other than English.
As Santa Clara County’s aging population expands, so will the demand for services that will keep older adults healthy and independent. In addition, the county’s growing, ethnically diverse population of seniors will present added challenges in terms of culturally congruent care. Among the county’s 1.9 million residents, two of the largest ethnic groups are Asians at 37.4% and Hispanics at 25.1%.
Brownstein explained that the assessment of the county’s senior needs found that more seniors will rely on paid caregivers provided by home care agencies.
Unpaid Caregiving Squeezes the Sandwich Generation
So who pays for care and who delivers it?
That burden of care falls increasingly on the shoulders of unpaid, informal family caregivers like Nishrin and her mother. They represent the 41 million family caregivers nationwide who, according to a 2017 AARP study, provide an estimated 34 billion hours of care to an adult with limitations in daily activities. This unpaid economic contribution was valued at approximately $470 billion.
Another worrying trend reported by AARP is that 63% (two in three) of family caregivers aged 50+, care for an adult 65 or older. That’s the Kahlil household.
Nishrin acknowledges the strain on her is growing. “Yeah, the person being physically there definitely has more stress, but it’s still doable. Knock on wood.”
Barriers to Care
Finding home-care assistance in Santa Clara County isn’t easy. Families like the Kahlils face barriers created by eligibility limitations, high costs of private home care, and workforce shortages.
It leaves families with few options.
California’s Medi-Cal system does provide a range of free or low-cost health services to low-income residents, but not everyone qualifies for Santa Clara County’s In-Home Healthcare Services (IHSS) program.
Terri Possley, IHSS Manager at Santa Clara County’s Department of Aging & Adult Services, confirmed that Medi-Cal is “generally limited to individuals with no more than $2,000 in assets and couples with no more than $3,000 in assets with certain exclusions for such assets as homes and vehicles.”
That means families with incomes above Santa Clara county’s low-income threshold, for example, a 4-person household at $117,750 or a 5-person household at $127,200, will struggle to cover health aide costs.
“From my personal point of view,” says Rob Brownstein, “it’s crazy to tell people they have to impoverish themselves before society will help them deal with long-term care, which is increasingly a problem that impacts very, very large numbers of people.”
Medicare and commercial insurance plans do not cover long-term care. The exorbitant costs of long-term care insurance mean that almost 90% of Americans don’t have any, reports the Pew Trust, because people worry that changing premiums could wipe out their savings.
High Costs of Care
Hired help doesn’t come cheap, says journalist Jaya Padmanabhan, a Santa Clara county resident who needed assistance for her 88-year-old mother who was diagnosed with early onset dementia.
In the San Jose metropolitan area, costs for out-of-pocket services range from $64,000 to over $67,000 per year for a personal care or health aide providing 40 hours of care per week, reports Working Partnerships, making it unaffordable for seniors on fixed incomes.
At over $20 an hour to hire a home health aide, in California, families will need to fork out between $2300 to $6600 a month to hire a qualified home care aide from a licensed agency.
Padmanabhan paid a private agency $2500 to $3000 a month for an aide to provide 3 to 4 hours of care a day. The aide bathed, dressed, and cooked for her mother. But Padmanabhan served as primary caregiver the rest of the time.
“It became untenable,” said Padmanabhan, to pay for more hours even as her mother’s health deteriorated, and the level of need rose. “Each time you press a button to ask for additional help, it comes with a price tag.”
When she couldn’t manage anymore, Padmanabhan made a heartbreaking decision to place her mother 3000 miles away in Chennai, India, where she would get the culturally sensitive care she wanted.
For older adults with moderate, fixed incomes who have to pay out-of-pocket for care services, the outlay is not sustainable, especially in Santa Clara County where the cost of living outpaces retirement incomes.
Trends indicate that ‘Santa Clara County must be prepared for an increasing number of older adults who will have no savings to tap into in order to pay for the cost of home-based care,’ reports Working Partnerships.
A Staffing Shortage
IHSS manager Terri Possley admits the program is overstretched and unable to meet demand. She gets about 700 phone calls a month for intake applications.
“Of those 700 we see anywhere between 350 and 400 new people every month,” says Possley. “Each social worker has almost about 350 cases right now. They’re overburdened with cases so we don’t have enough social workers.”
IHSS has notified the Santa Clara Board of Supervisors that hiring enough social worker staff is a priority, but funding is an issue, says Possley.
“I feel like we can’t do anything else to make it clear to the board of supervisors. Their hands are tied because they don’t have enough funding coming from the feds and the state. Unless changes happen at a federal or state level where we get a bigger cut, I don’t know if anything can be changed.”
Home care aides don’t stick around, says Bob Brownstein, because they are poorly paid. In Santa Clara County, IHSS workers have an annual turnover rate of 33 percent. According to Working Partnerships, county home health aides earn an average of $17.63 per hour or $36,670 per year while personal care aides make less at $13.46 per hour or $28,000 per year. Santa Clara County, like the rest of the U.S., is experiencing high turnover among caregivers because of historically low wages and few benefits that do little to attract new applicants.
High costs, staffing shortages, and strict Medi-Cal restrictions create insurmountable barriers to seniors who need assistance. While MediCal covers low-income households and affluent families can afford expensive private services, without a safety net, the majority of older adults in Santa Clara County lack coverage for home-based care.
So families like the Khalils rely instead on their family for intergenerational caregiving support.
A Caregiver Shortage
For now, however, the biggest limitation in the county’s homecare service delivery is a shortage of trained caregivers. The Bureau of Labor Statistics recorded about 24,000 personal care aides and only 710 home health aides in the San Jose metropolitan area employed in both the public and private sectors. Eighty percent are female, 70% are people of color, and almost half are foreign-born. But Working Partnerships reports that to fully meet demand, California will need as many as 3.2 million additional care workers by 2030.
Santa Clara County’s website states it served 26,592 IHSS recipients with 30,751 IHSS providers, but only individuals who “receive Supplemental Security Income (SSI) or meet all Medi-Cal income requirements” are eligible for IHSS provisions.
So, what happens to families who don’t meet these criteria?
Jaya Padmanabhan says she gave up on the IHSS application process because it was complicated. The Khalils only received moderate support because a physician referred Sabbar for assistance from Santa Clara County’s IHSS program after he was released from the hospital following a bout of pneumonia.
But before the county would assign them a cleaning aide, the Khalils had to pass a stringent two-step evaluation of their income and service needs. Once vetted, a social worker authorized an aide to provide 50 hours of cleaning. The county pays the aide with a combination of state, federal, and county funds. But the majority of caregiving still rests on members of the Khalil household.
Sabbar needs more assistance as his health deteriorates. But before the county will authorize more home care, the Khalils need another re-evaluation. In the last year the county has not responded to her request for a new social worker assessment, says Tahera
“I have not been able to connect with my social worker for quite some time. The social worker used to come every year. We spoke to the person in charge, and she said that they have too big a load.”
Culturally Competent Care
Nishrin is adamant that if her parents lose their independent lifestyle, she would take them into her home, rather than move them into institutionalized care. Nishrin will not put her parents into a long-term or skilled nursing facility because those settings do not offer culturally congruent care. The Khalils are Bohra Muslims. Halal meat is a cornerstone of their diet.
“Daddy would be totally confused,” she says. “He’s definitely lost if he’s not in familiar surroundings. But if I cannot take care of them myself, I would prefer somebody coming to their house, to take care of them in their own home, and cook for them, with my supervision.”
While the state and county grapple with answers to this question, the South Asian community really needs to advocate for its seniors, adds Brownstein. They could take the initiative to develop a training module for culturally competent care.
“If a community wants to move in this direction, they should be talking to county leaders about making sure that the training covers these kinds of things.”
Changing the Caregiver Dynamic
What could change, says Congresswoman Anna Eshoo (CA14), is how we rethink the system. Eshoo understands the challenges of aging because she moved her own parents from Fresno into her home.
“Today, both parents work. How can they possibly juggle taking care of an elderly parent, and all the needs that they have day in and day out?”
One answer to the social worker shortage is to train someone else to do basic assessments, says Eshoo.
“There could be a cadre of public health people that are trained to answer the most common questions that a caretaker at home would call and ask. So, you don’t need 500 social workers to be answering some of the most basic questions.”
Brownstein agrees that Santa Clara County needs better solutions and supports to allow its aging population and multigenerational households to successfully manage their long-term care and conditions.
Who’s Going To Train the Trainers?
California just launched a three-and-a-half billion-dollar master plan that includes senior care services, and an initiative that will train people to deliver home support services with cultural competency.
Brownstein has doubts about its execution.
“Who’s gonna do the training, even for things that are broadly needed, like dealing with people with dementia, much less the culturally competent needs of people from South Asia? The question is, who are the trainers?”
Even Santa Clara Assembly Member Ash Kalra (CA Dist.27) voiced concern. ”It’s far better, both in terms of resources, as well as in terms of public health, to allow seniors to be able to stay at home and give them the support they need. That’s an area where the state is investing more resources. But I think that we have a long way to go in order to ensure that everyone has access to care that allows him to stay at home, rather than go into a facility.”
Caring for the Hidden Poor
At Jewish Family Services of Silicon Valley, Director Susan Frazer is piloting a senior care plan that offers a promising blueprint for community-funded, volunteer-driven, eldercare programs. Services range from care management to scheduling medical appointments, food prep, and transportation. Individuals who have the means to pay, support those who can’t afford services or need a subsidy, based on a sliding scale that accommodates their needs.
“The only way we can do this,” says Frazer, “is because the Jewish community gives to the Jewish community.”
This social enterprise model, adds Frazer, gives the community an opportunity to play a role in giving the ‘hidden poor’ the services they need but cannot afford.
“Our community should have an honest conversation on these issues,” says Assembly Member Kalra, who is from San Jose. “Not everybody in our community is wealthy, but everyone has the resources. And yet, when the issue of care comes up, we are very insular. We don’t talk about the problems that we have. I think that we have enough resources and enough ingenuity to put together some kind of plan that has some kind of safety net for those in our community that goes beyond what the government safety nets are. And we should be lifting each other up and taking away the burdens of those in our community.”
Band Aid Solutions
If the Khalils and seniors like them need to live out their lives with dignity and independence, they cannot make do with the band-aid solutions the county currently has in place.
The county has to build capacity, improve access, and reduce the burden on family caregivers, while the desi community needs to mobilize and lobby lawmakers to make caregiving more affordable and culturally competent for older adults.
Tahera says she often cannot find a reliable provider.
“They usually give us a list of people who can help out. They don’t last for too long. People – they just don’t stick around.”
“Then I just manage on my own. It’s tough.”
As complex, long-term care needs for seniors grow in scope, and intensify demands on family caregivers, the expectation that families alone will provide care for older relatives with chronic, disabling, or serious health conditions is unsustainable.
Without support, the Khalils, like similarly burdened families across the country, are in danger of slipping off the caregiver cliff.
This report was made possible with the support of palabra. / NAHJ, and Altavoz Lab created to support community journalists in investigations on accountability in the service of immigrant communities, Latinos, or other populations that are not sufficiently represented in the media.
This report was written for the Desi Dost – Our Kutumba Project by desicollective.media, which examines aging issues in the South Asian community.
All photos of the Khalil Family: by Sree Sripathy for India Currents/CatchLight Local.
This story was produced in partnership with CatchLight as part of the CatchLight Local Visual Storytelling Initiative. To learn more about this collaborative model for local visual journalism, sign up for CatchLight’s newsletter.