Connecting Latino caregivers to resources
A southern California program tried to overcome barriers between Latino caregivers and resources they need for support. Is it working?
Scott Norris, Natalia Rodrguez Medina and Maryann Batlle, Rochester Democrat and Chronicle
Can tax credits for family caregivers provide more financial stability in households where the caregiver has sacrificed other impact to support a loved one in need? Let's take a closer look at a key element of proposals considered as part of President Joe Biden's social spending proposal currently under debate in Congress.
Family caregivers make up the vast majority of care providers in the United States, and in many cases, they receive no compensation for the work.
In fact, many spend thousands of dollars each year to care for their loved ones. A recent AARP study found that 78% of family caregivers are paying for care-related expenses out-of-pocket, at an average of $7,240 per year.
That's on top of income or other benefits that family caregivers may be losing if they're taking time away from work to care for an aging parent or family member with a disability.
Theresa Robertson, of Elkridge, Maryland, works from home at a small company she started a job that, critically, gives her enough freedom to care for her husband, Emanuel.
At 63, Emanuel Robertson has suffered a series of strokes and kidney failure, has been hospitalized countless times, and is experiencing mild vascular dementia.
Theresa Robertson needs to be at home toadminister his medication, check his blood pressure, take him to doctor's appointments and make sure he gets to dialysis.
Emanuel Robertson's care also takes money. Theresa, 58, estimates that the family spends$4,000 per year on caregiving expenses.
The Robertsons have spent their retirement savings. Theresa, who manages a team of virtual assistants remotely from her home, is missing out on all the benefits that a more traditional job would bring, includinghealth insurance and a retirement plan.
Right now, she's debating whether to get a job at night so that she can access better insurance for Emanuel Robertson, who needs a kidney transplant, and for herself.
It is incredibly difficult, Theresa Robertson said of the financial burden. It is a sacrifice.
Abill being considered in Congress recognizes the intense financial pressures on family caregivers. Called the Credit for Caring Act, the bill would offer tax credits of up to $5,000 to people like Robertson.
It's an acknowledgment of the fact that family caregivers provide hundreds of billions of dollars in unpaid care each year, sometimes leaving their jobs like Robertson has and losing out on healthcare, retirement savings and other benefits, according to the AARP.
The burden falls disproportionately on women, who make up 61% of family caregivers, and people of color, especially Hispanic and Black family caregivers, who report higher levels of financial strain.
Some family caregivers receive compensationthrough a patchwork of state Medicaid programs. But most states, including Maryland, do not pay spouses to care for their husbands or wives.
"Part of me feels like why should someone compensate me to take care of my husband? I love my husband, so there's nothing I wouldn't do to make sure he's safe," Theresa Robertson said.
"On the other hand, it's crushing."
Caregiver advocates say the tax credit could make a major difference for struggling families. But the financial situation for family caregivers is so dire that $5,000 won't be enough to cover the immense need for help.
"In my mind, it's not a bad idea, but it doesn't move the needle," said CharlotteDodge, the senior advocacy manager for Caring Across Generations. "It's not the kind of investment or support for family caregivers that I think we at Caring Across Generations would like to really prioritize."
What might make a bigger difference, Dodge said, is the Biden administration's proposal to spend $400 billion to bolster in-home caregiving services (though that number may be whittled down as Congress haggles over a massive spending proposal).
That plan could make professional, in-home care much more accessible, removing the burden from family members who care for their loved ones out of necessity.Hundreds of thousands of Americans are on state waiting lists for home- and community-based service waivers through Medicaid.
"Any massive investment in home- and community-based services could relieve the care burden by allowing more family caregivers to stay in the workforce," Dodge said.
Robertson said family caregivers would welcome "any help at all."
"Families are making (financial decisions) every day, all day long," she said. "What they can and can't do, what they can and can't afford. It's a matter of life and death, and they have to do it all by themselves."
Some programs already exist to compensate family caregivers, but they vary widely by state.
A few states allow spouses to serve as at-home caregivers and be paid throughMedicaid. But most states don't, or have strict limitations on which family members can get paid to care for a loved one.
It can feel arbitrary to family caregivers trying to navigate the system, experts said.
"On the whole, it's not a great system, and there are a lot of barriers and challenges for family caregivers," Dodge said.
A few innovative programs have tried to fill the gap, including the Veterans Health Administration's Caregiver Support Program.
The two-tiered program offers basic resources to anyone caring for a veteranand a more comprehensive set of support services for veterans and caregivers who meet a set of eligibility requirements.
The higher level of services includes a monthly stipend for family caregivers, which can vary depending on the veteran's needs, medical services for the caregiver, counseling and mental health services, respite care and travel expenses.
It is considered "the gold standard" for family caregiver support services, Dodge said.
"The support services that that program offers Ithink is definitely more robust than any other family caregiver program that I'm aware of," she said.
The program launched in 2011 to support veterans who came home from Iraq and Afghanistan with serious injuries that would require long-term care, saidDr. Colleen Richardson, the executive director of the VHA Caregiver Support Program.
"Men and women were surviving injuries they wouldn't have otherwise survived in other wars," Richardson said. "Spouses are giving up entire careers to care for these veterans. How do we help them?"
That's how the caregiver program was born, though for years it was limited to veterans who were seriously injured on or after Sept. 11, 2001.
The program has been celebrated for its innovative approach to supporting family caregivers, but its extensive services have come with a rising price tag as more veterans and their caregivers become eligible for the program.
The VHA at first vastly underestimated the need for these caregiver support services.
A 2014 report from the U.S. Government Accountability Office found that about 15,600 caregivers had been approved for the support program more than three times the VHA's original estimate of 4,000 caregivers approved by Sept. 2014.
The costs of the program also grew with the number of caregivers. The GAO estimated the services would cost more than $263 million in the 2014 fiscal year, up from $225 million the previous year,and keep increasing.
Since then, the program has continued to expand. In 2020, the program began to include veterans who served prior to 1975. It is set to expand once again, to include veterans from all eras,in 2022.
The cost of the program is expected to balloon with the expansions.The Department of Veterans Affairs estimated the caregiver support program would cost nearly $1.2 billion in the 2021 fiscal year, according to the Congressional Research Service.
When lawmakers balked at the up-front costs of the proposed expansions in 2018, then-VA-Secretary David Shulkin argued that the program could ultimately save the government billions by reducing medical costs for veterans.
The program expansions have come with other obstacles, as well. The VA was two years behind when it implemented an IT system that would support the 2020 expansion.
The VA's Office of Inspector General estimated earlier this year thatabout 55,000 veterans would be eligible for family caregiver services by 2024.
Just tenmonths into the first expansion of the VA caregivers program, though, more than103,000 applications have come flooding in, Richardson said.
The VA is also planning listening sessions to assess how current caregivers feel about the program.
"I don't doubt we'll get some pretty honest feedback," Richardson said. "If we're not getting it right, ... I want to hear from them and see what we can do better."
Madeleine O'Neill has coveredthe Maryland State House and state issuesfor the USA TODAY Network. Email questions or story ideas to project editor Michael Kilian at mkilian@gannett.com
This and related stories on the Biden administration's caregiving plansare produced through the New York & Michigan Solutions Journalism Collaborative, a partnership of news organizations and universities dedicated to rigorous and compelling reporting about successful responses to social problems. The group, supported by the Solutions Journalism Network, has been producing stories on potential solutions to the challenges facing caregivers of older adults.
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