It’s not unusual for a family member to take care of an aging or disabled relative without receiving any compensation. This is especially true if the relative still lives in their own house, as they might not have access to disability housing. Unfortunately, this can limit the quality of care the relative receives, as the family members are often not trained, medically certified caregivers.
In 2009, more than 65 million people, or 29 percent of the U.S. population, provided care to a chronically ill, disabled, or aged family member, spending an average of 20 hours each week performing caregiving duties. In total, the value of care provided by family caregivers was about $375 billion, compared to $158 billion actually spent on homecare and nursing home services.
Oftentimes family caregivers do not receive any compensation, despite putting many hours and personal financial resources into looking after dependents. A typical family caregiver in 2016 spent nearly $7,000 each year on expenses related to caregiving, or about 20 percent of their annual income.
For Hispanic/Latinos, the out of pocket cost is higher, at more than $9,000 per year, or around 44 percent of their income. African-Americans reported spending about the same as white family caregivers, but at a larger percentage of their yearly income: 34 percent vs. 14 percent.
The cost is not just measured in money, either. AARP found that about 22 percent of caregivers in 2015 cited some sort of memory loss, like Alzheimer’s or dementia, as part of the reason for needing a caregiver. These caregivers, according to the AARP study, found they have a harder time performing daily tasks for their charge, and suffered from more emotional stress and worsening health as a result of their caregiving.
This cost can also manifest as a negative impact on work performance, as more than 8.7 million caregivers of older adults in 2011 also worked while performing caregiving duties. While family caregiving roles can be a full-time job in and of itself, individuals in this role are often not formally recognized as a full-time caregiver, though in many cases they may be eligible to receive aid or compensation.
There are resources that can help a caregiver better attend to their family member, such as Medicaid, grants, or even help from the caregiver’s employer.
Generally, to qualify for Medicaid, an applicant must make less than 100 percent to 200 percent of the Federal Poverty Level and be pregnant, elderly, disabled, or a parent or caretaker of a child. For all states, except Alaska and Hawaii, the single-person household poverty guideline is $12,490. A two-person household is $16,910. Alaska and Hawaii have higher thresholds.
Once they have qualified, applicants may be eligible to use Medicaid for self-directed services. Requirements vary by funding authority, but common requirements include:
Programs vary by state. Below are a few major examples.
Cash and Counseling
Cash and Counseling allows the person needing care to give funds to a care provider of their choice. These types of programs allow for friends and family members, including adult children and sometimes spouses, to be hired as caregivers. However, there are two common stipulations. First, the caregiver cannot also be a surrogate decision-maker, also known as a healthcare proxy. This is typically a spouse, guardian, or someone designated with durable power of attorney. Additionally, a Financial Management Provider may be assigned to help handle payment processing and withholding taxes.
Home & Community-Based Services
About 53 percent of all Medicaid spending went to Home and Community Based Services in 2014 — amounting to about $80.6 billion. Much like Cash and Counseling, these services help pay for and help reduce the burden of providing care. This includes services such as household chores and meal prep, modifications to homes for accessibility, case management, and respite care.
Each state offers Medicaid waivers, though types of qualifying care are different in each state. Some explicitly allow for covering assistance outside of nursing homes, such as adult foster care, where multiple adults live with a caregiver, or live-in care, where the caregiver lives in the recipient’s home. Each state is different; you will need to check which waivers are available in your area as well as what they cover.
Structured Family Caregiving
Provided by Caregiver Homes, Structured Family Caregiving is typically run at the county level. To be eligible, the person receiving care must be eligible for Medicaid and unable to do one of the following daily living activities: eating, walking, grooming, dressing, bathing, using the toilet, or getting into and out of bed. They must need 24-hour live-in care as well.
In 2018, AARP found that only about 7.2 million Americans had long-term care (LTC) insurance. Typically, these policies pay out $160 each day for nursing home coverage, with a waiting period of three months and a maximum of three years of coverage. This is meant to help with day-to-day activities.
The average LTC insurance policy carries a $2,700 yearly premium, though there are discounts for couples of about 30 percent off, compared to two separate policies. If you are impoverished, Medicaid may cover these costs.
In general, because of the high cost, few people opt for long-term care insurance. Instead, many are now going for a hybrid policy that acts as whole life insurance, but from which you are allowed to draw for long-term care, combining the best aspects of an LTC policy and whole life insurance. The main difference is that, unlike LTC policies, these hybrid policies will return the money to your heirs should you end up not needing long-term care.
These hybrid policies are, however, much more expensive. AARP found the combined annual premium for a 55-year-old couple is about $8,100, compared to $2,100 with a traditional policy. At 65, that goes up to $13,800 and $3,700, respectively.
Veterans may be eligible for help from the Department of Veterans Affairs. There are additional medical resources from non-profits that may help with medical bills, as well as resources for disabled veterans.
According to the VA, Veteran-Directed Care is “for Veterans who need skilled services, case management, and assistance with activities of daily living (e.g., bathing and getting dressed) or instrumental activities of daily living (e.g., fixing meals and taking medicines); are isolated or their caregiver is experiencing burden.”
For veterans who have a pension, the Aid & Attendance (A&A) and Housebound programs provide additional funds for caregiver services. Veterans who require the aid and attendance of another person, or are housebound, and are eligible for the regular monthly pension, are also eligible for the A&A pension. The A&A pension is in addition to and does not replace the regular monthly pension. However, a veteran or surviving spouse may not receive both the A&A and Housebound additional pensions at the same time.
The VA often offers caregivers support, as well. This includes training, a support line, peer support monitoring, tips, tools, educational resources, and services connecting caregivers in order to support one another.
As part of VA healthcare benefits, the VA’s Home and Community Based Services program may provide long term care, including support for family members, as part of Geriatrics and Extended Care assistance.
To ease the burden of taking care of a veteran, the VA offers a number of programs to assist caregivers. Adult Day Health Care Centers, for example, offer a chance for the veteran to get out of the house and participate in activities in a safe environment with constant supervision, giving the caregiver a break. Other programs include telehealth, respite care, hospice care, and in-home care on a routine schedule.
Should the veteran die, caregivers and other family members are offered grief counseling services by the VA. This information can be found in the survivor benefits packet provided by the VA.
Medicare insurance may qualify you for “Part-time or intermittent home health aide services (personal hands-on care).” People with Medicare Part A or B must meet all the following conditions to be eligible:
Usually, a caregiver needs to be involved with a home health care agency, meaning they may want to get certified. It’s important to note that, unlike Medicaid, which is administered at the state level, Medicare will not cover live-in care or adult foster care. It is only for part-time or intermittent care, and will not cover family caregivers that live with the care recipient.
Generally, to become certified by a state, a caregiver must take training and pass a test. For example, in Washington state, long-term care workers must complete 75 hours of training through a Department of Social and Health Services-approved program, and then pass a home care aide certification test. These programs are typically offered at community colleges or vocational schools. Some employers, such as nursing homes, might also provide approved training.
Other requirements often include a background check and joining a state registry of caregivers. From there one can become an independent contractor or work for an agency.
Depending on the state and the individual business, some employers may provide paid leave for family caregivers. This is different from the Family and Medical Leave Act (FMLA), which is unpaid leave.
California, New Jersey, Rhode Island, New York, Washington, Massachusetts, and the District of Columbia allow for paid leave for family caregivers. While each state is slightly different, in general, each allows for care or bonding with a new child; care for a family member with a serious health condition; care for your own disability which prevents work; and some states allow for care of a family member on active duty.
Each state offers a different length of time. Typically, family care leave allows for between four and six weeks of time off, though Washington and Massachusetts both allow for up to 12 weeks.
The major stipulations are centered around generally having already worked a set number of hours, or receiving payment for a set amount for work done in the state. California, for example, requires the employee to have been paid $300 in wages in the base period, while Washington requires at least 820 hours worked in the past four out of 5 quarters prior to the filing leave application.
None of the programs offer full wages; typically, the pay is offered at half the employee’s normal rate.
An elderly family member may be able to find local, state, and national assistance to pay for a family caregiver. For example, there may be housing resources available to them, from affordable senior housing programs, to resources that help with modifying the accessibility of a home.
Some states have programs that provide funding or reimbursement to family caregivers through Area Agencies on Aging via the National Family Caregiver Support Program. The Administration on Aging provides an AAA locator that can help connect you with services including counseling and respite care, as well as caregiver training and classes.
Through the National Family Caregiver Support Program and private grantmakers, nonprofits can apply for and receive grants earmarked to help family caregivers. Then, caregivers can access grant money through programs across the nation. Some examples of available grants include:
Finding grants and other services that will pay a family member to be a caregiver can be tricky to find and may have complicated eligibility requirements, but it’s worth taking the time to find a program relevant to your family.
Family caregivers may find themselves unable to cope financially because their caregiving responsibilities and meager income are forcing them to live below the living wage in their state. The government only mandates that employers pay the minimum wage, and, in general, the average live-in caregiver salary is $24,064.
Additionally, families could be convinced to pay a family member through a contractor agreement instead of spending the money to pay an agency. This would essentially make the family member a freelance caregiver, rather than an agency employee.
If the caregiver does work for an agency, it might be worth asking for a raise. It might be worth getting a Home Health Aide certification, as home health aides earn slightly more than caregivers. Becoming a nurse that specializes in home health care can also dramatically increase your salary thanks to the increased skills required for the job.
Being a caregiver for a family member is a hard task, but it does not have to be a thankless one. There are options for getting paid to take care of your family member, and plenty of resources that can help with training or support.