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12 Things Caregivers Need to Know About Medicare

Learn how to navigate the system to get the best coverage for your loved one


spinner image medicare card with a compass overlayed on a map
Photo Collage: AARP (Source: Alamy (3))

Medicare can be complicated when you’re making your own health care decisions, but it has an extra layer of complexity when you’re trying to help a sick or aging relative navigate the system.

Genesis Brown, a certified adult gerontology nurse practitioner in Falls Church, Virginia, often sees family members who suddenly become unpaid caregivers after their loved one is discharged from the hospital or diagnosed with a chronic condition.

“They will need follow-up care, medication management and care navigation,” she says. “Caregivers are being thrust into this new environment. It’s overwhelming for families.”

‘As a caregiver, you’re always on the defense’

If you find yourself in this club of about 38 million people, you’ll quickly need to learn how to provide care, navigate Medicare and become your loved one’s advocate — even if you’re not of Medicare age yourself.

“As a caregiver, you’re always on the defense, making sure [your] mother is being served well,” says Jessica Guthrie of Fredericksburg, Virginia. Guthrie, who has been caring for her mother, Constance, for 10 years, moved from Texas to Virginia as her mother’s caregiving needs increased because of Alzheimer’s disease. “Twenty-four hours a day my brain is thinking about navigating the system for my mom,” she says.

Guthrie was only 26 when she started providing care for her mother. “I have put my life on hold in many ways, but you only get one mom, and I’m grateful to pour into her what she did for me,” she says.

Beyond determining what Medicare covers and doesn’t cover, as a new caregiver, you need to know how to:

  • Pick the best Part D or Medicare Advantage plan each year.
  • Appeal a denied claim.
  • Qualify for financial assistance.
  • Take advantage of extra coverage for chronic conditions or support for caregivers.

But your knowledge about Medicare shouldn’t end there. Here are a dozen tips for getting the best coverage for your loved one’s growing health care needs.

1. Make sure Medicare has permission to talk with you

Medicare can’t share claim or billing information with caregivers unless they have authorization from the Medicare beneficiary. Make sure your loved one fills out Medicare’s Authorization to Disclose Personal Health Information form.

If a Medicare recipient is unable to sign the form, a personal representative can sign if authorized legal documents, such as a power of attorney, are attached.

Keep in mind that Medicare authorization is different from the paperwork needed to make medical decisions on someone’s behalf. For that, you need a health care power of attorney, also called a health care proxy.

2. Get access to your loved one’s online Medicare account

An online Medicare account is a great resource for personalized information about Medicare coverage, claims and costs. You can review claims as soon as they’re processed rather than waiting for the quarterly Medicare Summary Notice (MSN).

That can help you identify claims problems or potential Medicare fraud. Account information may include eligibility for preventive benefits and a list of drugs taken regularly, which can give you a head start when comparing Part D prescription drug plans during open enrollment.

3. Review the Medicare & You handbook

Updated annually, the Medicare & You handbook is a great snapshot of Medicare’s rules, coverage, costs and changes. The booklet also spells out Medicare rights, steps for appealing denied claims, and where to get help with Medicare questions.

4. Find out about free preventive care

Medicare Part B covers more than a dozen preventive services without deductibles or copayments, with eligibility based on age and risk factors. It also covers an annual wellness visit, when a primary care physician creates a personalized prevention plan for the year.

And thanks to the Inflation Reduction Act, your loved one can now get all vaccines recommended for adults covered by Part B or Part D without any cost sharing, including vaccines for the respiratory syncytial virus, better known as RSV, and shingles.

5. Review Part D, Medicare Advantage during open enrollment

If your loved one has a Part D prescription drug policy or Medicare Advantage plan, you should to review the options annually during Medicare open enrollment, which runs from Oct. 15 to Dec. 7. New coverage starts Jan. 1. Coverage and costs can change significantly from year to year.

Compare what’s covered for all medications and health care needs, not just premiums. Use the Medicare Plan Finder to review costs for Part D and Medicare Advantage plans in the area.

6. Learn about programs to help with chronic conditions

Medicare has several programs to support people with chronic conditions, including a yearlong diabetes prevention program for those diagnosed with prediabetes, as well as a nutrition therapy program and a new $35 monthly cap on insulin costs.

Medicare’s chronic care management services can help navigate care for people with two or more chronic conditions. Check out Your Medicare Coverage at Medicare.gov and use its handy search tool for information related to the condition.

If your loved one has Medicare Advantage, consider a special needs plan that provides coverage and coordinated care for chronic conditions, such as diabetes, cardiovascular disease or end-stage renal disease.

Video: How Medicare is Paying to Support Family Caregivers

7. Take advantage of Medicare’s caregiver resources

Medicare’s increased focus on helping family caregivers includes paying doctors and other providers for time spent training family caregivers to help with medical tasks, such as giving injections and managing medications. For Chiquita Brooks-LaSure, administrator of the Centers for Medicare & Medicaid Services, that meant learning how to give a relative an injection.

“That’s not something you necessarily know if you have never done that,” she says. “It’s so important that we value making sure caregivers have knowledge about how to care for their loved ones, and if you pay doctors and nurses for their time, it sends the signal that it’s important.”

Another new program, Medicare’s Principal Illness Navigation Services, helps patients with high-risk illnesses and their caregivers understand diagnoses and guide them through the health care system. This helps people with AIDS, cancer, chronic obstructive pulmonary disease, congestive heart failure and heart disease, dementia or severe mental illness — and their caregivers — make decisions.

8. Find out about financial assistance

While Medicare covers the bulk of medical expenses after age 65, there are still out-of-pocket costs, including premiums, deductibles and copayments. Your loved one may qualify for federal or state programs that help pay some of these costs.

Medicare Savings Programs help pay Medicare premiums and copayments, and the Extra Help program assists with Part D drug costs. The good news: Medicare recently increased income eligibility for the full level of help.

9. Understand what care is and isn’t covered

Medicare doesn’t cover long-term care in a nursing home or assisted living facility, which is one of its biggest gaps. It covers some short-term skilled nursing care in a Medicare-certified skilled nursing or rehab center after a three-day stay in a hospital as an inpatient. But other resources can help with these expenses.

If you need help with caregiving at home, you may be able to get coverage for home health care in limited circumstances. Medicare covers only part-time or intermittent skilled nursing care, as well as medically necessary occupational, physical and speech-language therapy your doctor orders. 

To qualify for Medicare’s home health benefits, the Medicare beneficiary must be homebound and under a doctor’s care, and the services must be provided through a Medicare-approved home health agency.

10. Learn how to appeal a prior authorization or claim denial

Some health care plans require approval of a service or medication before paying for it. While Medicare has few prior authorization requirements, a growing number of Medicare Advantage and Part D plans require it before approving certain types of care or drugs.

If denied, an appeal can be worthwhile, especially for Medicare Advantage plans. A 2023 KFF study found that in 2021, only 11 percent of Medicare Advantage prior authorization denials were appealed, but 82 percent of the appeals were overturned in part or full. The Medicare Advantage claim denial notice will outline steps for filing an appeal.

If original Medicare denies a claim after a service is performed, the quarterly summary notice will report the amount of noncovered charges and the maximum you may be billed. It, too, will explain steps to appeal the denial.

Consider contacting the provider’s billing office before you appeal. The problem may be a coding error or other fixable mistake. Otherwise, you have up to 120 days to appeal a denied claim.

11. Be prepared for hospice when the time comes

When end of life is evident, the valuable benefits of hospice care, particularly its medical, emotional, spiritual and social services, can bring you peace. Medicare Part A covers certified hospice care in the home, inpatient hospice center, nursing home or other facility.

To qualify, the doctor must certify that the patient is terminally ill and has a life expectancy of six months or less. Medicare covers most expenses related to terminal illness, with few out-of-pocket costs, including respite care to provide a break for you.

12. Know how to get help

Medicare can be complicated, but great resources are available to help with your questions about Medicare enrollment, coverage, costs and claims.

Each state has a State Health Insurance Assistance Program, which provides free one-on-one assistance with Medicare questions. Medicare’s 800-MEDICARE and the Medicare Rights Center’s helpline at 800-333-4114 are also good resources.

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