Caregiving for a family member can be time-consuming and emotionally draining. It can be financially draining, too.
About 48 million Americans provide care without pay to an adult family member or friend, and they do so for an average of nearly 24 hours per week, according to the "Caregiving in the U.S. 2020" report by AARP and the National Alliance for Caregiving (NAC).
Another AARP study issued in June 2021 found that 78 percent of family caregivers regularly incur out-of-pocket costs caring for a loved one, with the average annual expenditure topping $7,200.
That unpaid and often expensive commitment can make it hard for caregivers to make ends meet. Twenty-eight percent say they have stopped saving money, and 23 percent have taken on more debt, the AARP/NAC study found. Growing awareness of this financial burden has fueled a national conversation around issues like paid leave and even outright payment for family caregivers.
Your chances of getting paid to be a family caregiver are best if you are caring for a U.S. military veteran or for someone eligible for Medicaid, but other possibilities exist.
For Medicaid recipients
All 50 states and the District of Columbia offer self-directed Medicaid services for long-term care.
These programs let states grant waivers that allow qualified individuals to manage their own long-term home-care services, as an alternative to the traditional model where services are managed by an agency. In some states, that can include hiring a family member to provide care.
Benefits, coverage, eligibility and rules differ from state to state.
Some programs pay family caregivers but exclude spouses and legal guardians. Others will pay care providers only if they do not live in the same house as the care recipient.
Program names also vary. What is called Consumer Directed Care in one state might be called Participant-Directed Services, In-Home Supportive Services or Cash and Counseling in another. Contact your state Medicaid program to ask about its options or to start the sign-up process.
Enrolling in self-directed care involves the following steps:
• Assessment. Your loved one — with assistance if desired or needed — is assessed for capacities, need, preferences, risks and strength as the Centers for Medicare & Medicaid Services requires.
• Planning. Your family member and any chosen representatives create a written service plan detailing the daily living assistance required. Areas may include bathing, dressing, feeding, helping with light housekeeping and laundry, managing medications, moving from bed to wheelchair, preparing meals, shopping, supervising activities and transporting to appointments. Contingency plans should be available for coverage when the care provider is off and instructions for fill-in caregivers should address risks.
• Budgeting. If the assessment shows need, a budget for goods and services will be provided.
• Selection. When the care plan is set, the care recipient, or a surrogate if needed, chooses a caregiver.