Long-Term Care Provided by Family or Friends

Copyright © 2014 AARP. All rights reserved.

After trying to navigate the maze of home care services and insurance requirements, some people say, “Why can't I just get paid for taking care of my parent?” And in fact some options to do just that exist, but they are very limited.

People generally do not know their options for getting services in their own homes, and unfortunately, there is no national clearinghouse to guide you through the maze of publicly funded programs. Particularly when people are quickly discharged from a hospital (and it is usually very quickly!), there is little time to do the legwork needed to know about various options and how much they cost.

It is prudent to find out about all the options in your community — ranging from care in the home to residential care — and then take the next best step.

As you look into having a friend or family member provide care versus hiring a professional, here are a few general points to remember if you consider taking on the job yourself:

  • Wages will be low. Think rates for home care aides, not nurses.

  • There are no benefits in the sense of paid vacations, health insurance, or pension.

  • Where you live matters. State programs differ significantly.

The following paragraphs provide some more information on who may pay for a friend or family member to provide routine, ongoing care.

State programs for family care

Most states have programs that help pay for in-home care called variously consumer-directed, participant-directed, cash and counseling, or other titles. These programs differ by state in terms of funding, eligibility, option of paying family members, exclusion of certain categories like spouses or legal guardians, limits on the number of hours, wage scales, and more.

Even within the same state, different programs may have different rules about whether family members can be paid. Waiting lists are common. As states cut their budgets, these programs may be further limited.

Most, but not all, programs require the person receiving care to be eligible for Medicaid. He or she also has to meet the requirements for the consumer-directed option. If you or your parent meets these requirements, a counselor will work out a monthly budget. Some states limit the budget to an amount that is not greater than the state would pay for home care agency services.

With final approval, you or your parent can now hire and fire whomever you choose. Or you can use the money for other approved uses. States generally offer the services of a fiscal agent to manage the budget and file necessary reports.

For more background, go to the National Resource Center for Participant-Directed Services for specific information, follow up with your state's Medicaid or aging services department. It may take time to find the right person to help you.

Long-term care insurance

Some long-term care policies make payments to family members who are providing home care. However, they may exclude people who live in the same household. Ask the insurance agent to explain this benefit and its conditions.

Caregiver contracts

You or your parent may be willing to pay a family member directly through a caregiver contract. 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 (your siblings, for example). Be mindful of the emotional pitfalls in this arrangement. The pay should be reasonable and in line with what you would pay if you hired an aide.

Courts have not looked favorably on caregiver contracts that seemed to be ways to transfer assets — for example, by paying very high salaries — to become eligible for Medicaid or avoid estate taxes rather than pay for care. Avoid these situations be getting good legal advice.

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