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How to Navigate Health Programs

Read a transcript of an online chat with Judy Peres, a long-term and palliative care expert

In a live online chat, Judy Peres, a member of the AARP Caregiving Advisory Panel, answered visitor questions about paying for care, collecting Medicare and Medicaid benefits, and more. If you missed the chat, check out the below transcript of the conversation.

Comment From Kathy: Hi Judy, my dad has stage 4 pancreatic cancer and was finally hospitalized, released to hospice care, and now we are looking for long-term care because he is not in distress or in extreme pain. I am confused and not sure that my 73-year-old father is getting a fair shake. We were told that he can not stay in hospice care for longer then 21 days because that is the limit Medicare will pay. His long-term policy won't kick in until 90 days has passed. We were told by a social worker that the waiting period is often waived on terminal patients. I don't know what the truth is; does Medicare "kick out" terminal patients from hospice care? Can long-term care insurance companies waive the wait fee? Why would anyone ever get long-term care insurance if it doesn't pay out when needed? Lots of questions ... thanks for your help.

Judy Peres: Thanks for writing, Kathy. I am sorry to hear about your father's illness and challenges with the system. It sounds like some of the information you are being given is not totally accurate.

There is no day limit to Medicare hospice coverage. Currently, for Medicare beneficiaries electing the hospice benefit, palliative care services related to the terminal illness are covered. A primary care physician and the hospice medical director must certify that the patient has an expected prognosis of 6 months or less if the patient's disease trajectory follows its normal course. For subsequent periods the hospice physician recertifies the beneficiary. After having been certified by a hospice physician, the beneficiary may elect the hospice benefit for two 90-day periods and an unlimited number of subsequent 60-day periods.

Before the start of each 60-day period, the beneficiary must have a "face-to-face" encounter with a hospice physician or nurse practitioner to determine continued eligibility. Although hospice patients are frequently discharged earlier, they have a right to appeal. Under Medicare, hospice patients have the right to appeal when their provider decides to discontinue hospice care entirely (42 C.F.R. 1/2405.1200(b)). Since each long-term care insurance company sets its own rules, I would suggest you contact your father's plan while you pursue his hospice appeal rights.

Comment From Patricia: Does Medicare or Medicaid pay for any home health care?

Judy Peres: Both Medicare and Medicaid pay for certain home health care services. Home health services include skilled nursing; physical, speech and occupational therapy; social work services; and aide services for assistance with functional needs. These services enable the provision of good care at home, but Medicare limits coverage to beneficiaries who meet the definition of "homebound" (unable to leave their homes without considerable effort) and who have a part-time (fewer than 8 hours per day) or intermittent skilled need. No deductible or coinsurance is required.

Home health care coverage and services are not the same as general home and community-based services (HCBS). Medicare does not cover many needed services under the home health benefit, including 24-hour daily home care; home meal delivery; housekeeping services such as cleaning, laundry and shopping; and personal care from home, i.e. a home health aide when aide care is the only type of care you require. Medicare does not pay for full-time home care, meal delivery, maid-type services or ADL assistance care (personal care assistance) if this is the only care required.

Administered by individual states, Medicaid is a joint federal-state medical assistance program for low-income individuals. Each state has its own set of eligibility requirements; however, states are only mandated to provide home health services to individuals who receive federally assisted income maintenance payments, such as Social Security and individuals who are "categorically needy." Categorically needy recipients include certain aged, blind and disabled individuals who have incomes that are too high to qualify for mandatory coverage but are still below federal poverty levels.

Under federal Medicaid rules, coverage of home health services must include part-time nursing, and medical supplies and equipment. At the state's option, Medicaid also may cover audiology; physical, occupational and speech therapies; and medical social services. Home and community-based services (HCBS) provide opportunities for Medicaid recipients to receive services in their own home or community. These programs serve a variety of targeted population groups.

The Clearinghouse for Home and Community Based Services will help you understand what is available in your state.

Comment From Bob Blair: I need a weekly caregiver to assist with bathing and showering. Is there a provision for this?

Judy Peres: Hi, Bob. I can understand your need for help bathing your mom. Unfortunately, as I mentioned to Patricia — Medicare does not cover supportive services. There are additional senior services that you can find in your community by checking with your state unit on aging:

Comment From dibo: I have the impression that you are not qualified for Medicare and Medicaid if you have retirement money. You need to spend your money first to get them. How much money may you have but still qualify for them? It sounds like a penalty to those saving for retirement. Hope I am wrong.

Judy Peres: There is no financial qualification for Medicare. Medicaid is for people with limited incomes and assets. The amount to qualify can vary by state. Generally, it is about $2,000 (excluding your home and car) in assets, but there are protections for spouses and dependents.

Comment From Germaine Walker: I lost my job Oct. 29, 2009. I drew unemployment for two years. I was caring for my mother who was diagnosed with Alzheimer's in 2007 and my brother who has Down syndrome. I have been caring for them since 2005, making sure my mother was taking her meds and my brother was taken care of as well, since my mother was his caregiver after my father passed away at the age of 57 in 1986. I am the oldest (58 years), my sister who lives in Miami (54), and my brother who is 43. I've worked in skilled nursing facilities all my life so I won't be putting her in one. My question is how do I go about getting paid for being a caregiver for my mother and brother?

Judy Peres: Unfortunately, Medicare does not have any program to pay a family caregiver. In many states Medicaid has a program to directly pay a person needing home care and that person can use the money to pay a family member (or another of their choosing) to provide that care. These programs, known as Cash and Counseling, give people with disabilities, including older adults, the option to manage a flexible budget and decide what mix of goods and services best meet their personal care needs. Participants may use their budget to hire personal care workers, purchase items and make home modifications that help them live independently. Those recipients who don't feel confident making decisions on their own may appoint a representative to make decisions with or for them. To find out whether your state has a Cash and Counseling or similar program, contact your local Medicaid, human services or social services office. Also, you can visit the National Resource Center for Participant Directed Services. The project overview section has a program map for you to see what is available in your state.

Comment From Joe: In general what are the age limits for acceptance to long-term care insurance?

Judy Peres: Age limits can vary depending on the private insurance. Generally, it is around age 80.

Comment From Liz: When a parent is in a nursing home, should you visit every day or encourage them to get more involved with activities offered? What is a healthy visitation amount of time?

Judy Peres: Hi, Liz, there is no one "right" answer to your question. Each family is different and each of us has our own intimacy needs. Once a family member has moved to a nursing home, it is important to visit as often as time allows. Residents of nursing facilities need to be reassured on a regular basis that they are still an important member of the family. When you visit, be supportive and affectionate.

Ask permission to visit and then plan your visits in advance. First, it is important to enable your parent to retain as much control in his or her life as possible. By asking their permission to visit, you are enabling your loved one to have control over at least one aspect of their schedule.

Listen attentively to your parent. Treating older adults like children, even if they are frail or cognitively impaired, only contributes to low self-esteem and increased dependence.

Become acquainted with nursing home staff. Your active involvement and consistent visits illustrate your interest in your loved one as well as an appreciation of the care they provide. Do not hesitate to thank the staff or compliment something they have done well.

If you are unable to visit your loved one in person, because of distance or your own health limitations, be sure to keep in touch by telephone or by sending notes and cards. Receiving pictures of you, your garden or your pet could brighten your family member's day and provide something to enjoy for days afterward.

Comment From schase: Thank you for this. My question, I guess, is how do you really know when it's time to put Mom in a home and you're not giving enough. I have had Mom at home for 5 years now and she is steadily getting worse, lately very quickly, but I know when she goes into a home it will be worse. The guilt takes over and I just don't know. I do know I'm heading for burnout with little support and don't feel like I'm giving her the care she needs. I'm also taking care of a 20-month-old. Support groups? Who has the time?

Judy Peres: It is certainly difficult caring for a parent and a young child. You should seek support for yourself as a caregiver. Call 800-677-1116 or log on to to find out about services for caregivers in your area. You can also learn about services to help your parent. Thank you for the care you give.

Comment From Kathy G: Does a person have to be 65 to qualify for Medicare?

Comment From dibo: Is Medicare for old people and Medicaid all ages?

Judy Peres: I'm going to answer two questions at once. Generally, Medicare is available to people who are 65 or older, people younger than 65 with certain disabilities and people with end-stage renal disease (permanent kidney failure). The Medicaid program covers people with low income, is jointly funded through federal and state funds and is state administered, so different rules apply in each state.

Medicaid does not cover all categories of all persons who have low incomes, but it does cover people age 65 and older and younger persons who have disabilities severe enough to qualify them for disability payments through the Supplemental Security Income program.

Medicaid eligibility rules are very complex and vary by state. In general, however, older people living in the community, like your mom, are eligible for Supplemental Security Income — or, in some states, those who have income less than the federal poverty level and who have financial assets of less than $2,000 for individuals and $3,000 for married couples are eligible for Medicaid. Supplemental Security Income provides cash benefits of up to about three-quarters of the federal poverty level to low-income people. Individuals are not eligible for Medicaid if they have home equity exceeding $500,000 ($750,000 at state option). Thirty-four states and the District of Columbia also have "medically needy" Medicaid eligibility rules, which allow people with higher incomes who have substantial medical expenses to "spend down" to Medicaid income requirements.

Comment From Jeff: I've heard conflicting things about respite care. I currently take care of my mother on a full-time basis. I was told she is eligible for 2 weeks respite care through Medicare. She is also a WWII veteran. Thanks for your response.

Judy Peres: Jeff, I am glad you are asking about respite care. Caregivers need time off from their caregiving responsibilities to relieve stress and prevent burnout. Brief reprieves from a caregiving situation are healthy not just for you but also your loved one. You have correctly identified the challenge in receiving respite care that is reimbursed. Medicare does not pay for respite care for the caregiver unless the patient is in hospice. Medicare respite care is inpatient care given to a hospice patient so that the usual caregiver can rest. You can stay in a Medicare-approved facility, such as a hospice facility, hospital or nursing home, up to 5 days each time you get respite care.

However, other help may be available. I suggest that you contact your local Area Agency on Aging for possible respite care sources in your area. You can also contact Senior Services and Social Services. Senior volunteer services and private nonprofit agencies are the common providers of home-based respite care programs. The U.S. Department of Health and Human Services Eldercare Locator Services helps place caregivers with agencies and services in their area. Their telephone number is 800-677-1116.

Comment From Susan Keller: Does the Affordable Care Act include coverage for palliative care for people dealing with life-limiting serious illness?

Judy Peres: Medicare is the dominant payer for care in the last phases of life. Medicare payment policies, however, are focused on acute care treatment in hospitals and skilled nursing services, which are not always aligned with patient goals of advanced illness management. Except under the Medicare Hospice Benefit and PACE program, original Medicare's financial incentives promote hospitalization and the use of skilled nursing facility settings. Because of the acute care focus, many components of quality palliative end-of-life care for advanced illness are not reimbursed. For example, interdisciplinary care, on-call services, home health aides for personal care, patient/family education for self-care, support and training of family caregivers, spiritual care, bereavement counseling and continuity of care across time, place and providers. The good news is that all of the above are covered by the Medicare Hospice Benefit.

Comment From Anne: My mother lives alone and is resistant to moving into independent care even thought she can barely take care of herself. She's in the early stages of dementia and is in denial. How can I make it easier for her to move to an independent care facility?

Judy Peres: Anne, it is difficult when we see a reality different from our parents'. The first step to developing a plan is to validate your mother's feelings. Understand and accept that everyone copes with change differently. Change can make an anxious person more anxious … it can send chronic deniers into denial. Hearing your mother's concerns will help her understand you are on her side. If your mother won't listen to you, you might try enlisting the aid of someone else whom she trusts. You might try her physician, an old friend or clergy. As long as your mother can make her own decisions, they are hers to make.

If your mother is not willing to consider alternative housing, even though you and other family feel she can't stay where she is, consider gathering for a group intervention. In an intervention, everyone is gentle and respectful but firmly conveys the message that you are concerned about her and want to help her make decisions about her care and safety.

Comment From Jacki Forkel: Are there any ways to get financial help when both parents need 24-hour care and they and the family are unable to give much financial assistance?

Judy Peres: Jacki, it sounds like you and your parents have fallen into the sad reality that there is no consistent funding of long-term services and supports. A variety of long-term care services, ranging from adult day care to meals on wheels, transportation and respite care, are present in many urban and suburban communities around the country, but the supply, availability and funding vary dramatically by state. There are some services that will help you discover what is available in your state:

State Health Insurance Assistance Programs (SHIPs) offer free health insurance counseling in your community.

State Units on Aging are agencies that administer, manage and design benefits, programs and services for elders and their families.

Also try your AARP state office.

I hope the above helps point you in the right direction.

AARP: OK, that's about it for us. Thank you for the great questions. Visit the AARP Caregiving Resource Center for more resources, checklists and videos.

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