As any family caregiver will tell you, caregiving is hard. In addition to the stress involved, family caregivers often take a financial hit. But there are ways to get a hand paying for the care you provide, including some new ones created because of the pandemic.
In the recent Caregiving in the United States 2020 study from AARP and the National Alliance for Caregiving, almost one in five survey respondents said they experienced “high financial strain due to family caregiving.” Family caregivers spent an average of $7,000 a year out of their own pockets, according to a previous AARP study.
These studies were completed before the pandemic, though, and the financial impact of family caregiving has gotten worse since the outbreak of COVID-19.
The new family caregiving costs due to the pandemic
“We’ve seen instances where people had been receiving home care services prior to the outbreak and providers who weren’t willing or able to offer care during the pandemic,” says Alexis Travis, senior deputy director of the Aging and Adult Services Agency within the Michigan Department of Health and Human Services.
In addition, Travis added, “adult day programs have been closed during the quarantine and participants now have to spend more time at home and need care.”
My friend Linda can attest to this. In early March, Linda, who lives in North Carolina, had to fly to Massachusetts and spend two months taking care of her mom who has dementia. Her mother’s adult day program had shut down and a home health aide who’d spent 20 hours a week caring for her was no longer willing to provide care in the house.
Both of those expenses had been covered by MassHealth, Massachusetts’ Medicaid program.
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Besides dealing with her mom’s dementia, Linda lost income from being unable to work for the two months. Plus, she incurred additional grocery expenses, since the lunches previously provided four days a week in her mother’s adult day program were no longer available.
A common question: Can I get paid?
Sima Schoen, national caregiver resource specialist at the National Center on Caregiving’s Family Caregiver Alliance, says “the majority of the calls I receive are family members asking if they can get paid as caregivers.”
It turns out, sometimes they can – through a Medicaid-funded offering that can let some family members become paid caregivers.
While Medicaid provides long-term care coverage for people with a very low income, the Older Americans Act of 1965 was established to help Americans 60 and older with health issues who don’t qualify for Medicaid but still need financial help.
The Medicaid program that compensates family caregivers is known as Medicaid Self-Directed Services. It’s for someone over 60 who needs help at home and is capable of directing the caregiving process.
Every state and Washington, D.C. provide the self-directed option; some states allow the person needing care to hire family members to provide it.
The Family Caregiver Alliance provides a state-by-state list of these programs. You choose the state and click on “Caregiver Compensation.”
Many of the programs don’t allow spouses or legal guardians to be paid caregivers, however. And reimbursement rates, coverage and eligibility vary from state to state.
State Medicaid programs to help family caregivers
To add to the complexity, the names of these programs differ in each state – Cash and Counseling, Consumer Directed Care and more.
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Michigan’s self-directed care option, for example, is the MI Choice Waiver Program. In Michigan, according to Audrey Tezak, quality and education coordinator of the Area Agency on Aging of Northwest Michigan, those needing care can choose a family member as a paid caregiver.
Fees are set by the person needing care and generally range from $11 to $15 an hour, similar to what a caregiver from a home health care agency would get paid. Most family member caregivers in this program spend 10 to 20 hours a week on caregiving duties.
California has In-Home Supportive Services ( IHSS). It is a Medi-Cal-funded program (Medi-Cal is California’s Medicaid program) that provides self-directed, in-home personal care services to eligible people who are 65 or older, blind or disabled. The maximum number of monthly hours reimbursed is capped at 195 or 283 a month. IHSS-provider rates are negotiated and set by individual counties; they range from $13 an hour to $16.50 an hour.
Massachusetts has the Personal Care Attendant ( PCA) program. Participants must be able to live alone and hire and manage their care providers, who can be family members. The rate for PCA caregivers is $15.75 an hour.
Assistance for live-in support by family members
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If the person needing care needs more support, including a live-in caregiver, some states offer additional options for those who are Medicaid-eligible.
For instance, the Adult Foster Care program from Medicaid in Massachusetts provides payment for live-in caregivers who might be family members. To qualify, the person receiving care must have MassHealth insurance (Medicaid) and a medical condition preventing completion of daily tasks. The caregiver must be living in the same home as the person receiving care and can’t be married to, or the legal guardian of, the person receiving care.
“Rates vary depending on the level of care,” says Lisa Prince, executive director and CEO of Tri-Valley, the Area Agency for Aging in Dudley, Mass.
“For Level One care, the patient would require daily physical assistance for two or less activities of daily living, such as bathing, dressing and eating. Level Two care is when the person requires physical assistance with at least three activities of daily living. Level One care offers caregivers $26 per day, and Level Two care provides compensation of $50.25 per day.”
There is no limit to the duration of the placement, and many of these situations are long-term. “We’ve even had placements for 20 years,” says Barbara Bodzin, executive director of LifePath, an Area Agency on Aging/Aging Service Access Point based in Greenfield, Mass.
New COVID-19 help for family caregivers
To help families during the pandemic, since early March 2020, states have been able to apply for what are known as Medicaid Emergency Preparedness and Response for Home and Community Based Appendix K Waivers.
According to a National Academy for State Health Policy Support article, 17 states and Washington, D.C. are using the flexibility provided by Appendix K to compensate family caregivers, sometimes including spouses.
The National Family Caregiver Support Program, part of the Older Americans Act, doesn’t provide compensation to family members who are caregivers, but does pay outside caregivers to provide respite care, or occasional care, when family caregivers need a break.
In 2014, the last year figures are available, more than 600,000 family caregivers received about six million hours of respite care services. Those services range from caregiving responsibilities at home or in an adult day care or other facility. The funds are disbursed through local Agencies on Aging and other organizations helping people over 60.
And on March 27, 2020, The Coronavirus Aid, Relief, and Economic Security (CARES) Act was signed into law, providing almost a billion dollars in grants to help older Americans and their family caregivers during the COVID-19 crisis.
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For example, Bodzin, of LifePath (the Area Agency on Aging/Aging Service Access Point based in Greenfield, Mass.) says her agency has provided supplemental support funding typically ranging between $50 and $600 for family members in need who are caring for someone over 60.
The ‘last resort’ – a GoFundMe campaign
Then there’s the “last resort” method my friend Sharon used to find much-needed funds to care for Rose, her 95-year-old mother: GoFundMe.
Rose’s health had been deteriorating, and early this year, Sharon began taking care of her mom full time instead of working. Sharon tried helping Rose apply for Medicaid, but her mother didn’t qualify.
Desperate for financial assistance, Sharon decided to put up a GoFundMe crowdsourcing page. It included a photo of Rose with her beloved dog Sheba and explained Rose’s situation. To date, the effort has raised $2,534, which has let Sharon hire a respite caregiver for several hours a week.
A recent search on the GoFundMe site revealed several other similar COVID-related caregiving funding requests.
If you’d like to find out whether you can get paid to be a family caregiver, Lisa Gurgone, executive director of Mass Home Care (supporting older Massachusetts residence aging in place) recommends contacting your local Area Agency on Aging/Aging Service Access Point. You can find your agency by entering your ZIP Code into the federal government’s online Eldercare Locator.
Once you find your local agency, Gurgone says, ask to speak with the Information and Referral Department about Medicaid and non-Medicaid programs letting family caregivers receive compensation or respite services.
“Your local aging agency has so many programs that support caregivers in dealing with daily activities, coping with burnout, and more,” said Gurgone. “Plus, new funding resources can show up at any time, so keeping in touch with your local agency is always a good idea.”
If a family member needing care is a veteran or the spouse of one, contact your state Veteran Affairs Office and ask to speak with a Veteran Service Officer who can help you identify resources.