Managing Your Own Health Care

In managing your health care the best defense is a good offense. This means you must be prepared, have information about your disability or condition, and know how to work with your health care professionals. The better prepared you are, the better you will be able to direct your personal assistant (PA) in helping you. To help you maintain your health, this page covers several important areas.

• Preventive preparation and maintenance
• Basic information
• You and your physician
• Planning for your visit to the doctor
• At the doctor's office
• How to manage all those pills
• Preparing for Hospitalization
• Helpful Medical Documents
• Emergency Help, Resources and Safety Devices

Preventive Preparation and Maintenance

Preparation

Develop a lifestyle habit of "preventive preparation and maintenance" toward your health and essential supplies.

Do your physical limitations require that you rely upon medications, medical supplies, devices or equipment? If so, the supplies will run out, devices and equipment will breakdown and wear out as you use them. Prevent predictable down time because of sickness, a lack of supplies or broken equipment by planning ahead. If necessary, get your PA to help you. Develop the following habits.

• Regularly check your medications and supplies. Reorder or purchase before you run out of any item.
• Inspect and listen to mechanical equipment for signs of wear. Do this on a regularly scheduled basis. Repair or replace parts or entire items before they wear out or break down at inconvenient times.

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Basic Information

Become the best information source on your own medical history.

Learn at least the basics about your condition. Learn how your body functions. Learn what typically can happen to your health and functioning specifically for your disability or condition. Learn what preventive care you can take to keep healthy and keep your body functioning. Learn what you can do when a breakdown occurs.

Learn everything you reasonably can about:

• How your body functions.
• How your disability effects those functions.
• Which body functions are most prone to malfunction or sickness.
• What to do when common sicknesses occur.

Keep written records of dates and details on:

• What major illnesses you have had.
• What breakdowns in your health or condition have occurred.
• What repeatedly recurring minor illnesses you have had.
• What was done to remedy the problem.
• What medications or tests were taken.

These records will help your memory. They will help you to tell your health care provider your history. They will enable you to be alert and practice preventive maintenance yourself.

Take responsibility for coordinating your own health care. You cannot expect anyone else to care as much about your body as you do and you cannot expect anyone else to do this for you.

Emergency Medical Information

Remember, medical authorities are your employees. You should consult them whenever you have questions about your health care.

Most of today's health professionals welcome a patient who asks questions and participates in health care decisions. You may have questions about diagnoses, treatments, medications and self-care.

You have the ethical and legal right to ask questions and to get answers that you understand. You should feel free to ask how your body works, what has gone wrong with it in the past, what might go wrong in the future, and what you should do to maximize your good health. If your medical professional doesn't respect those rights, then you should change medical professionals.

Emergency Medical Information - Use this tool to collect all of your emergency medical information into one place. You should give this information sheet to your PA. Post it, along with your Emergency Contacts, next to each telephone in your house.

Emergency Contacts and Important Phone Numbers - Use this tool to help you make a handy list of important phone numbers to give to your personal assistant (PA)and to keep by the phone. You should include the Emergency Medical Information sheet with this contact list.

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You and your physician

It is important to have a good working relationship with your health care professionals.

Working with or selecting a physician

You probably already have a physician who is familiar with your condition or disability. Do you know whether or not your doctor knows the fine points of your disability? Does s/he know how your disability can effect other illnesses? If you do not have a doctor or you are not satisfied with your current health care provider here are some suggestions for making a selection.

General information

Ask the following questions:

• Does the physician or group practice take your health insurance?
• Does the doctor's office do the insurance billing for you? Do you have to pay for the visit first?
• How do you contact the doctor in an emergency or after hours?
• To what hospitals does the doctor admit patients? This is important if you want or need a certain hospital.
• If the doctor is unavailable who will be able to answer your questions or see you if needed?
• It is important to select a doctor and establish a relationship while you are well. Many doctors have a longer initial appointment with new patients. The longer appointment enables them to get to know you.

As a person with a disability or special condition, you have other considerations in selecting a physician. For example, your health insurance coverage may limit your choice of a physician. If your health insurer is

A Preferred Provider Organization (PPO)

• it may not have a specialist you need in the group
• you will have a higher co-pay or
• you will have to pay more to go outside the group.

A Health Maintenance Organization

• you will be limited to the physicians on its staff.
• you usually will have to see a primary care physician before you can see a specialist.
• you may need to convince your HMO to have a specialist for your primary care physician if your condition or disability complicates more usual illnesses.
• it may require the use of generic drugs or only those drugs on an approved list of medications. If a specific drug might be better for your condition, your physician can ask for an exception.

Things to consider in selecting a primary care physician

• What kind of physician do you want? A generalist, family practice, internist, or specialist?
• Is the physician board certified or board eligible (eligible to take the exams for certification) and in what field?
• What are his views about health and people with disabilities, chronic conditions, or older patients?
• Does he support health maintenance (wellness) and preventive measures?
• Will he support your bringing another person with you to your appointments if you want?
• Does he understand that you intend to be part of the medical decision making?

Planning your visit to the doctor

A well-planned visit uses both your time and the doctor's time effectively. If you are prepared you will be less likely to get flustered and forget something important.

What to take with you

• Your insurance cards.
• Names of other doctors you may be seeing.
• The medical history you prepared earlier.
• A list of medications, health food supplements, vitamins and over the counter medications you currently are taking with the dosages of each.
• A list of any allergies you may have to drugs or other substances.
• A list of questions, concerns and reasons for the visit. Be explicit. For example, instead of saying "My back hurts" say "I have a sharp pain that starts at my lower back and goes down my right leg. It started two days ago". If you have many concerns, put them on the list in order of importance.
• A tape recorder or pen and paper to take notes to be sure you have all the information you need and understand what the doctor says.
• A family member or close friend to help you take notes, remind you of what you want to know, or help with questions. Make sure the person you take understands that he or she is there to assist you, not to take over.

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At the doctor's office

• Be brief and to the point.
• Be prepared to tell the doctor any important information he may need to know about major changes in your life. These may include a death of a loved one, loss of a job, marriage, divorce, changes in your energy, sleep patterns, weight loss or gain.
• Be honest. If you haven't followed your diet, say so. It could effect your medications. Also give the doctor a copy of your list of medications, over-the-counter medications, vitamins and other supplements.
• Ask questions from the list you brought with you as well as others that arise in the visit. If you aren't sure you understand clearly, repeat back to the doctor what you think he said. If you still don't understand ask him to explain further.
• Let the doctor know what you are feeling. If you are fearful, uncomfortable, feeling a need for more information, say so. If all else fails, offer to come back another time to discuss your concerns.
• Take notes or have your friend take them, or tape-record the visit. If the instructions or advice seems complicated ask the doctor or the nurse to write them out.
• Ask for other sources of information about your condition: books, pamphlets, cassette tapes, videos.
• If the doctor tells you something unexpected that upsets you, ask for a few minutes to collect yourself. Then ask any questions you might have. If the doctor tells you that you have a serious condition that needs immediate attention, ask if you can have some time to think about it without negatively effecting the outcome.
• Consider a second opinion if you have concerns about the diagnosis or proposed treatment. Your health insurance company may require a second opinion.

Physicians are used to requests for a second opinions. Second opinions are important when a condition is life threatening. They also are important if the treatment could create a disability, or increase an existing one.

If the second opinion is different from the first, there are two things you can do.

1. You can get a third opinion.
2. Find another physician expert in the field to review the two previous opinions, and to make a recommendation.

Sometimes your doctor's referral will be to a physician who shares his view or approach to treating the condition. So you may wish to select the physician for a second opinion yourself. You can contact a respected medical school or organization that specializes in your condition for a referral. Try to find a doctor who understands your disability and the difference a treatment plan may have for you.

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How to manage all those pills

It is important to keep track of prescription medications, nutritional supplements, or over the counter medications you take. Develop a system for taking them. Unless your personal assistant (PA) is a licensed medical professional your state may not allow them to give you your medications. However, they may be permitted to get them out for you to take yourself.

• Explain your medications. Whether or not you need help in taking your pills it is a good idea for your PA to understand in general what the medications do for you. "The pills I take help my spasms," "This medication reduces my pain," or "I have a bladder problem that this medicine keeps under control."
• Make a list of your prescription medications and when they are to be taken. Post the list where your PAs can find it. This is critical if you need help taking them or if you ever need hospitalization, or need emergency care. The list also should include any supplements, vitamins and over-the-counter medications you take. Include the amount and how often you take them. Put prescription medications at the top of the list.
• Clearly label bottles. Keep medications in clearly labeled bottles. Don't re-use old bottles until the label is rubbed off. Don't place pills in unmarked pill organizers. If you must place pills in organizers, keep the original bottles nearby so emergency medical personnel can identify which pills are which.
• Keep medication in one or two areas. Don't scatter your medications throughout several rooms. Keep prescription medications within sight of PAs or paramedics to easily find if an emergency arises.
• Do you need help in taking medication? A missed pill could mean trouble for you. A dropped pill could mean death or illness to the child or pet that finds it.
• Make pill taking easier. Upon request prescriptions can be put in twist-open containers (not childproof). Many pills also are available in liquid form (ask your doctor). Pill crushers and pill splitters are available at pharmacies and health stores if this is a need.
• Never give others your medication. Although a large array of pills can be a tempting sight to PAs and friends, never give medication to others under any circumstances. The warning on pill bottles--"Federal law prohibits use by any other person"--means just that. It is a federal crime to let other people take your prescriptions.

Narcotic-containing painkillers, tranquilizers and antidepressants are drugs that PAs and others may try to get from you. Following are the names of a few drugs that fall into these categories.

Narcotic containing painkillers:

• Percocet
• Percodan
• Oxycontin
• Darvon
• Demerol
• Fiorinal
• Viocodin
• any medication containing codeine or morphine

Tranquilizers/antidepressants:

• Librium
• Valium
• Dalmane
• Serax
• Elavil

List is adapted from Avoiding Attendants from Hell: A Practical Guide to Finding, Hiring & Keeping Personal Care Attendants. June Price(1998), Science & Humanities Press, Chesterfield, MO.

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Preparing for Hospitalization

Don't think hospitalization can't happen to you. Prepare now for the inevitable.

• Don't wait too long to seek medical help if you are sick or injured. Waiting will only make the situation worse.
• Keep critical necessities handy. These include medications (prescription and over-the-counter), adaptive devices, special cushions, sponges, straws and so forth. Make a list of essential items you would need in a hospital so your PA can quickly gather them, if needed.
• Make a list of phone numbers and e-mail addresses you may need in the hospital. Include common numbers (close family, friends and personal phone number of your live-in PA that may be in their bedroom) as well as PAs, neighbors, landlord/manager, medical supply company, etc. Keep this with your medical documents.
• Call ambulance companies ahead of time to determine which would best meet your needs. Not all ambulances have electrical outlets in vehicles for plugging in personal ventilators. Post the number by the phone for your worker to access quickly.
• The Americans with Disabilities Act (ADA) requires hospitals to make essential services accessible. Just as they must provide an interpreter for someone who is deaf, they also must do such things as modify the nurse call button if you can't press it. They also must absorb all costs for these services.
• Ask which of your workers could assist you in the hospital. Most people with disabilities need to provide much of their own help in the hospital due to special needs and short staff.

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Helpful Medical Documents

• Emergency Medical Information. This list identifies your medical condition, history, medications and so on. We have provided tools to help you collect this information. Keep this list where others, especially PAs and paramedics, can easily find it. Update this regularly.
• Living Will. This document identifies your wishes regarding artificial life support if you are terminally ill. In some states it includes your wishes if you are in a persistent vegetative state. This document lets others know whether or not you want to refuse treatments that would "merely prolong the process of dying." A strict set of medical criteria must be met before your Living Will would take effect. Sources for obtaining this free form, which requires no legal assistance or filing fee, include legal aid departments and your state legislators. Send copies to your physicians and family. Keep the original
• Durable Power of Attorney for Health Care allows you to designate two people to make decisions on you behalf in the event that you are unable to do so. This is more flexible and comprehensive than the Living Will. It applies to all situations in which you are incapable of making decisions, not just when you are terminally ill. The people you name can access your medical records, speak to your doctor, and decide if certain procedures should be implemented or discontinued based on your interests. It is a powerful tool for getting your needs met even when you are unable to self-direct your care. These forms generally are free-of-charge and simple to complete without legal assistance. Contact you State Division of Health for information. Your health care provider also may have information on this. Give a copy of the completed form to your primary physician, to principle family members and to each of your attorneys-in-fact. Keep the original at home with your Emergency Medical Information packet.

Keep documents handy. Put copies of these documents including your Emergency Medical Information in a plastic bag. Place the bag in a readily accessible place such as taped inside a cupboard door. Label the bag "Emergency Medical Information Inside." This can be grabbed quickly in an emergency. Make sure all your PAs know where this is!

Keep the original documents in a file. If the plastic bag of documents are taken with you in an emergency you may not get them back and you do not want to have to do everything over again.

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Emergency Help, Resources and Safety Devices

You can stay safer while living alone with the following:

• An emergency response unit is a small alert system worn around your neck on a strap. When needed, press the button and a dispatch center is notified. With a call box in your home, the dispatcher can talk to you and determine the degree of assistance needed. Friends, neighbors or family members you have selected are called to assist unless emergency personnel are needed.
• Call local hospitals to see what is available in your area. If none offer the service, national programs exist, but usually at a higher cost. Most require a hook-up fee as well as monthly charges. Some funding sources underwrite the cost for participants. Check with local agencies or your caseworker, if you have one.
• A cordless or cell phone kept nearby (such as in your wheelchair) is a vital solution to on-call help for many. If possible, program in important contacts. Most cell phone services offer free "911" calls, although these cell phone 911 calls may not go to a local source but to a regional source that could increase the time that help reaches you.
• Spare keys to your home or apartment should be left with trusted family, friends, neighbors and /or PAs in the event of an emergency. You are not surrendering your privacy by doing this. You are increasing your independence and safety. There is nothing quite as helpless as someone being at the door unable to get in if you call for help.
• When hiding a spare key outside your house or apartment, don't put it under the doormat. One suggestion for apartment tenants is to discreetly tape the key above the doorframe of a neighbor's door. Be sure to get the neighbor's permission. Let a couple people know where it is. This also is helpful if your PA steps out of the apartment and inadvertently locks the door behind them.
• Home dwellers should leave their spare key under a heavy object at a neighbor's house--not yours! Again, make sure it is a trusted neighbor and that they give you permission to do this.

"Emergency Help" was adapted from Home Health Aides: How to Manage the People Who Help You, by A.H. DeGraff, 1988, Fort Collins, Colorado. Copyright 1988 by Saratoga Access Publications, http://www.saratoga-publications.com. Reprinted with permission.

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