Help DeskCaregiversHow to navigate the healthcare maze?Navigating the Healthcare Maze

5.1. Navigating the Healthcare Maze

Navigating the Healthcare Maze from Family Caregiving 101, offered by the Family Caregiving Alliance.

Most people - whether as patients, family caregivers, or health professionals - do not have a good idea of what medical insurance (assuming the patient has some) will pay for until the need arises. Family members and patients are often shocked to find that insurance will not pay for many services and items needed at home that are routinely paid for in the hospital. Unless your relative has specific long-term care insurance (and very few people do at this point), many home care needs, especially home care aides or attendants, will not be covered at all or beyond an initial short-term period.

HELP: Communicating Effectively with Insurance Company Personnel
HELP: Communicating Effectively in the Hospital Setting

Know What Your Insurance or Managed Care Company Is Responsible for Covering

  • If your loved one has been hospitalized, insist on being consulted by the discharge planner about the care plan before decisions are made. Explore all the options, not just the one the discharge planner recommends.
  • Find out what your insurance company will approve for your loved one's care, why, and for how long.
  • Try to get one person from the insurance or managed care company (a case manager) assigned to your loved one's case and make sure that person fully understands the patient's condition so that the correct home care services and equipment are provided.
  • Look out for inconsistencies or vaguely described benefits. Do not let your insurance company deny coverage for something that has been covered in the past or that you believe should be covered.
  • Keep detailed records of phone conversations and personal contacts about the case. Write down whom you spoke to, what they said, and when they said it. Insurance coverage decisions are often flexible. You may need to document interpretations you have been given by different people.
  • If there is a home care nurse or aide assigned by an agency, make sure that person is experienced with your loved one's care and can handle the physical, behavioral, and technical aspects.
  • Make sure you have been assigned the correct level of home care assistance. Registered nurses, practical nurses, and home health aides or personal care workers have different skills and limitations. There are also different types of agencies, only some of which are Medicare - Medicaid certified.

Identify and Use All Available Resources

  • Get to know your local pharmacist, who is an excellent and readily available resource.
  • Familiarize yourself with print and Internet resources. Both books and Web sites provide excellent resources and can put you in touch with other people and community agencies that can help. There is a vast amount of information on the Internet, so be selective and use credible sources.
  • Discuss your options with people outside of your network who have experienced your situation.
  • Have friends and family help with some of your managerial chores - sorting out bills, reviewing insurance policies, etc. Do not let bills pile up.

Be Assertive About Your Rights

  • You can say no if hospital discharge planners want to send your loved one home and you feel you are not prepared to provide the necessary care at home. Be flexible but firm as you negotiate a feasible plan.
  • Request an aide or home care nurse to come to the hospital and help you bring your loved one home, including riding in the ambulance, setting up the bed and other medical equipment.
  • Make sure your loved one has the proper transportation to and from outpatient visits.
  • Ask for a re-evaluation of the situation at a specified time (a few weeks or months).

Recognize How the System Can Work Against You

  • Administering the best possible care (i.e., changing dressings daily, using the most appropriate medications and providing other necessities) may be very costly. Such care may not be covered by your insurance policy. You will almost certainly have out-of-pocket expenses for things that are not considered "medically necessary."
  • Instead of providing greater coverage, having two insurance policies could actually mean less coverage. Each plays against the other -- delaying or actually curtailing benefits. Make sure you have a clear agreement as to which payer is "primary."
  • A spouse is legally responsible for the partner's bills and his/her income is included in determining Medicaid eligibility. Unmarried couples are considered as single individuals, making it easier to get Medicaid benefits, which may include home care.

If someone tells you "Medicare (or another insurance) won't pay for it," don't stop there. Check it out yourself through your State Health Insurance Assistance Program, the Medicare Rights Center at (212) 869-3850 or online at, or through another independent source.

Contributed by Carol Levine, Director, Families & Health Care Project, United Hospital Fund

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