Nearly 40 million Americans are unpaid caregivers for older or disabled family members or friends. If you’re part of this group, a Medicaid-based Home and Community-Based Services (HCBS) program may pay you to care for a loved one at home.
Of course, eligibility, benefits and rules governing HCBS programs vary from state to state, and even program names change depending on where you live. What may be called “Structured Family Caregiving” in one state is “In-Home Supportive Services” in another.
The bottom line is this: HCBS programs allow a Medicaid beneficiary to receive long-term care at home or in the community.
Medicaid’s home and community-based services
For states seeking ways to meet the needs of their aging population, home-based care provides a cost-effective solution that’s beneficial to families. It allows people needing help with the activities of daily living or basic medical care due to chronic illnesses, disabilities or memory loss to stay where they’re comfortable rather than going to a nursing home. And for eligible family caregivers, HCBS programs compensate them for the care they provide.
The cost to caregivers
In 2017, unpaid caregivers provided 34 billion hours of care to loved ones—many at great personal cost. More than 60% of people juggled caregiving and work; 5% of respondents quit their jobs or retired early to provide care.
More than three-quarters of family caregivers in a 2021 AARP survey said they routinely had out-of-pocket costs related to caring for a loved one. The average annual expense in this survey topped $7,000. While most people surveyed found caregiving to be a rewarding experience, they faced financial hardships doing so.
Tapping into HCBS programs
HCBS programs can ease a family caregiver’s financial burden, but to be paid, your loved one needs to be eligible for Medicaid based on low income, low assets and/or disability. Beneficiaries must also demonstrate a functional need for help. Both financial and functional criteria are set by state.
In addition, all HCBS programs require an application. Rules, like financial and functional eligibility, vary by state:
- Spouses and guardians are ineligible in some states.
- Some states stipulate the housing arrangement (living in the beneficiary’s home vs. living in the caregiver’s home vs. living in adjacent homes).
- Some states require family caregivers to receive training before they can be paid.
- Many states require caregiver background checks.
- Some states allow family caregivers to work outside the home.
- Some states do not allow a caregiver to work at all, even from home.
What HCBS programs cover
Medicaid in all 50 states and the District of Columbia covers long-term home health care for eligible Medicaid beneficiaries. Home health care includes nursing services, home health aides (including family members when eligible), medical supplies and equipment.
Services covered under HCBS programs vary by state, too. States may choose to cover:
- Assistance with activities of daily living: bathing, dressing, cooking, transportation, etc.
- Private-duty nursing
- Rehabilitation services
- Adult day care
- Respite for caregivers
- A case manager who oversees care
The state agency or contracted health care organization administering the HCBS program may train and supervise the family caregiver, assist with the care plan, be available for emergencies, and provide a backup caregiver if needed.
Steps to take
To learn more about your options, first determine your loved one’s Medicaid eligibility by visiting your local Medicaid office or Medicaid’s website.
If your loved one already has Medicaid coverage, contact your state’s Medicaid office or Area Agency on Aging about HCBS programs. And be sure to ask about a functional assessment to determine the level of care your loved one qualifies for.