DYING BROKE: THE HIGH COST OF HELP

By Reed Abelson

Dec. 2, 2023

Most older Americans want to live at home as long as they can, but finding and affording the help they need often isn’t easy. There are severe shortages of home health aides in many parts of the country. Hiring them is costly. And most middle-class people will have to pay for home care themselves if they will need it for the long haul. Here’s a guide to locating home care for an older person.

What kind of home care do you need?

After a fall or surgery, some older people will need short-term care at home from a nurse or therapist to help them recover. Medicare, the federal insurance program for those 65 and over, typically pays for this kind of home health care. A nurse can make sure a wound is healing properly, for example, while a physical therapist can help a person get back on their feet after a knee replacement.

But millions of older Americans need assistance over months or years to stay in their homes safely instead of moving to an assisted-living facility or nursing home. They may require help getting out of bed, taking a shower or going to the bathroom; getting to the doctor; shopping for groceries or making meals. They need a home health aide or personal care assistant, who may not have much, if any, medical training.

How do I find help?

A wide range of services are available, whether it’s light housekeeping or hiring a private-duty nurse. Monica Moreno, senior director of care and support at the Alzheimer’s Association, suggests that you start by making a simple list of the kind of help you or your loved one needs and the number of hours each day or week required. To identify agencies and services available in your area, Ms. Moreno recommends looking through a database of community resources provided jointly by the association and AARP, the nonprofit group representing older Americans, that is searchable by location. A list of agencies and a brief description of what they provide can be found under the category of home care. AARP also has a guide to finding a home health aide.

Should I use an agency?

While Medicare certifies and gives star ratings to home health agencies, the businesses that provide home care services are not subject to federal oversight or required to be licensed in every state. But a good agency will run background checks on its workers and give them training and support. If an aide calls in sick or quits, the agency can find a replacement. Some businesses also bond and insure their caregivers. To choose an agency, Jennifer Battista, the chief operating officer for the Home Care Association of America, suggests inviting several of them to your home to conduct an assessment. Ask them how they vet their employees, whether they run criminal background checks, and whether their employees are required to know how to perform CPR or provide first aid. Be sure to ask for references for individual aides and talk to families who have employed them before.

Once you pick an agency, you may want to try a few caregivers before finding the right one. The more information you share about your loved ones’ needs, the better the agency will be able to find an aide who’s a good fit. “It’s a lot like matchmaking,” Ms. Battista said.

What about finding someone through word of mouth?

Many families have success finding a caregiver by asking people they trust for recommendations, said Nicole Jorwic, a lawyer who is the chief of advocacy and campaigns for Caring Across Generations, an advocacy organization. “Cast a wide net, post on private social media and ask family and friends,” she said, noting that she found caregivers for her grandparents by asking people in her community.

Churches and other religious institutions, local charities and community organizations may also have suggestions. A primary care doctor or local medical practice may have experience with specific home care agencies or know of individual caregivers. If you decide to hire someone privately, you should be sure to do a thorough background check and talk to families who have employed that person before. Family Caregiver Alliance, a California nonprofit group, provides a guide.

Will Medicare cover the cost of an aide?

Many home agencies erroneously say they can’t send a home aide and will tell a doctor’s office or patient that Medicare won’t pay for one. “This is a longstanding problem,” said Judith A. Stein, the executive director for the Center for Medicare Advocacy, a nonprofit legal group.

While it’s true that Medicare doesn’t pay for long-term care, it may pay for an aide as part of a patient’s care plan if that person also qualifies for a home nurse or therapist for a time. Agencies often refuse to provide someone because Medicare pays a lump sum per patient, meaning the agency isn’t paid more for sending an aide in addition to the nurse or therapist. Talk to the doctor about whether an aide is necessary so one can be specified in the care plan presented to the agency. Medicare patients are getting fewer visits from an aide now than they did some 25 years ago, and the center is now appealing a judge’s dismissal of a lawsuit claiming that Medicare, under the U.S. Department of Health & Human Services, discouraged the use of aides for thousands of people. The judge did acknowledge that many people were not getting care.

Will other insurance pay for an aide?

Under Medicaid, the state-federal program for the poor that provides long-term care, the cost of an aide is often covered as an alternative to a nursing home. But the shortage of workers can make it difficult to find one even if you qualify. Families complain of frequent no-shows, and the low wages paid under the program mean that agencies often have high turnover among workers.

Some private Medicare Advantage plans offer home care as a supplemental benefit, and it’s possible that some help will be covered under a long-term care insurance policy. If you or your loved one is a veteran, it’s worth checking with Veterans Affairs to see if it will pay for home care.

How much will an aide cost?

If you decide to pay privately, the hourly rates charged by agencies vary widely, and some agencies may not be able to fill a position for just a few hours a week. In San Jose, Calif., half of the agencies charged more than $37 an hour for a home health aide in 2021, according to Genworth, the long-term care insurer. Across the country, agencies are charging roughly $27 an hour with a little more than half of that going to pay their workers. There are no good estimates for how much people working for themselves may charge. You could save some money because there is no middleman taking a cut, but some independent caregivers charge roughly the same as an agency.

How do I report a problem?

If the agency you’re using is licensed by your state, you can check with the government office overseeing it if you run into a problem. You can also file a complaint with various state agencies, including the state health department.

Where else can I get help?

State or local government agencies that focus on aging or nonprofit groups can provide information. You can also try the eldercare locator. The Alzheimer’s Association also has some advice for finding caregivers, and it offers a 24-hour help line, 1-800-272-3900.

What about respite care?

Family caregivers should also think about taking advantage of respite care to give themselves a break from time to time. Depending on the circumstances, insurance may cover the cost, and there are local government and community groups that will also pay for an aide for a brief period. Churches and other organizations may also provide respite care.