Exploring the maze of public and private options for support

by Carol Levine, AARP, June 19, 2012

Most caregiving starts out as a labor of love, but it can quickly grow into an expensive obligation. In these economically insecure times, caregivers are struggling with heavy financial responsibilities, especially if they've had to quit their jobs to provide care.

I'm often asked by caregivers whether they can be paid for the work they do. Unfortunately, I'm not able to give a simple answer. A qualified "maybe" comes closest to reality. There are, however, several options to explore.

State programs:

Some states have programs that help people pay for the caregiver of their choice, and in certain circumstances that can be a family member. These programs — called, variously, "consumer-directed," "participant-directed," "cash and counseling" or other titles — differ enormously depending on where you live. Most have income and other eligibility requirements that the care recipient must meet, and strict rules often apply as to who can be paid for the caregiving. For information about what's available in your state, contact your local Medicaid or aging services department or go to the National Resource Center for Participant-Directed Services.

But be aware that there are waiting lists for these programs and that states have been cutting back on them because of budgetary pressures.

Veterans' benefits:

A law passed in 2010 provides a monthly stipend to primary caregivers of veterans injured in military conflict after 9/11. Other benefits to caregivers include travel expenses, access to health care insurance, mental health services and respite care of 30 days a year. For more information, call 1-877-222-VETS (8387). Caregivers of veterans of other wars may be eligible for the VA's Aid and Attendance Pension Benefit. In addition, some state programs are specially designated for veterans.

Long-term care insurance:

If your family member has long-term care insurance, it may cover some home care. Some policies permit family members to be paid, although they may exclude people who live in the same household. Ask your family member's insurance agent to explain this benefit and its conditions.

Caregiver contracts:

If none of these options apply to you, all is not lost, especially if the person you are caring for has some savings or other assets. For example, a parent may be willing to work out a caregiver contract and pay a son or daughter for the care he or she provides. Consult an elder care lawyer to make sure that the contract meets tax requirements, deals with inheritances and is approved by all other interested parties (siblings, for example). Be mindful of the emotional pitfalls in this arrangement.

Other options:

If you are facing financial hardship because of a caregiving situation, here are some other options to consider:

• See whether your family member is eligible for programs that send an outside caregiver into the home so the responsibility doesn't fall only to you. Start with Eldercare Locator or BenefitsCheckUp.org.
• Look into finding work you can do at home, or find a job that allows you the flexibility you need to be a caregiver.
• Hold a family meeting with siblings and others to discuss ways you can all share the financial burden.

Remember, your financial and emotional health should remain a top priority so you can continue to provide the kind of care your loved one needs.

An estimated 42 percent of working Americans say they've provided care for an older family member within the past five years. Some of the lucky ones can benefit from the federal Leave Act, but for many it's a balancing act between work and home.