Learning to work together with your child's health care providers will help you become an active partner in care decisions and will benefit your child's health care. Good communication is much more than listening to what the doctor has to say; it also means learning as much as you can about your child's condition, asking the doctor to explain anything you don't understand, and speaking up for your child. Your child's doctor is an expert in his field, but you are the expert on your child. You can help the doctor get to know your child and develop the best treatment plan for him.

Families want a health care provider who will be a partner in caring for their child. While sometimes a health care provider enters a family’s life suddenly in an emergency, most of the time parents are able to choose their child’s primary care doctor. The primary care doctor can help oversee all of the child’s care, including well care, referrals to specialists, and coordination of care and services, including community-based services. This central caregiver/provider approach to care is referred to as a “medical home” (see our About Medical Home page). To find a primary care doctor that meets the needs of your child and family:

• Ask other families who they recommend.
• Contact a support group or disability organization for recommendations.
• Ask the clinic about the provider’s experience with your child’s specific needs.
• Ask potential providers about their views on parents being present for treatments and taking a shared role in decision making.
• Seek providers you and your child feel comfortable with and who you feel will understand your family.

Research shows that when patients work together with health care providers to make decisions about their own care, health is significantly improved. This is also true with a parent’s participation in their child's health care. After all, parents live with their child and care for them every single day. A parent knows all the ins and outs of a child’s daily care and special needs. For example, a health care provider can't know that the medication prescribed to be taken three times a day requires 20 minutes to give each time, unless a parent or caregiver tells her. It's up to the parent to ask if there's another type of medication that can be given more easily. The tips below will help you work more effectively with your child's doctor.

Before the Visit

• Read up on your child's condition. In spite of what many people believe, health care providers are becoming used to more health-savvy patients and families. Many of them are even relieved when they don't have to spend too much time explaining basic facts about a health condition.
• Use the library or the Internet to learn everything you can about your child's disability or medical condition, including common treatments. Remember, though, that not all websites will give you accurate information. Look for government sites or those affiliated with an educational or well-known medical institution.
• Write down questions so you can ask your health care provider for clarification. It can be very difficult to remember your questions later, especially when you have a lot going on.
• Keep a journal or notebook of your child’s responses to treatment, new signs and symptoms, and other concerns.
• Keep organized medical records, including dates/places of visits to specialists, emergency room visits, hospitalizations and surgeries.
• Keep the contact information of all health and community providers organized and easy to find (names, addresses, phone and fax numbers).
• Choose your appointment time carefully. If your child's appointment is a first-time visit to a health care provider, or if you believe you need a longer visit to discuss a problem in greater depth, ask the scheduler to schedule extra time for the appointment. Think over what time of the day works best for your child. Most kids have more trouble waiting in an exam room when they're tired or hungry, and you can avoid this by scheduling the appointment right after lunch, or midmorning if possible.
• Prepare materials to show the provider. Be ready to discuss your child’s condition, drawing on your expert knowledge and from the experiences of others who are around your child often. Your health care provider has a set amount of time for each visit, and most likely has many other patients besides your child. You may only have a short time for the visit, so it’s very helpful if you have everything ready to show the doctor. For a first-time visit, this may include a history of previous medical care, a list of immunizations given and the medications or treatments your child takes, a list of current symptoms or problems, and any questions you may have.
• For later visits, such as medication monitoring, Peggy Morgan of LaPine, Oregon, mother of a child with developmental disabilities and author of "Parenting Your Complex Child," suggests using a chart or spreadsheet compiled from a daily journal. "When you have a complicated child, it can be difficult to show the health care provider what you're seeing, such as out-of-control behavior, appetite changes, or reaction to medications. They are much more impressed with data."
• Prepare your child for the visit by telling her what to expect. Take comfort items along to the appointment and discuss ways a child can express his feelings.
• Ask for help. If an unfamiliar medical office creates anxiety for your child and can trigger a meltdown, ask another adult to accompany you to the visit. You may need this person to entertain your child in the waiting area for part of the appointment, while you speak to the health care provider alone.

During the Visit

• Keep an open mind. Even if you believe that your child is not reacting well to a new medication or treatment, avoid coming to any conclusions or telling the health care provider what you want to happen—at least at the start. Start by telling them what you are seeing happen with your child. Remember that you're a team, and both sides should look at all information before a plan is made together.
• Share information with the provider about the changes/effects you see with your child.
• Listen carefully. After giving the information about your child, listen to what the health care provider says. Take notes if necessary, so that you can read them later.
• Ask questions. Don't be afraid to ask questions if you don't understand something, no matter how "dumb" you might feel it is. For example, if a test is suggested, ask what the test involves, why it is needed, and when you will be able to see the results. If the health care provider uses words you don't understand, ask him to explain it to you in “family friendly” terms.
• This is your chance to ask the questions you prepared before the visit, too. Be sure to ask them in order of importance, in case time runs out. Ask about resources that may help your child and family. If you have found resources that may help other families, share those resources. Ask about how to contact the doctor after hours if needed.
• Make a plan. Work with your child's health care provider to make a plan. Don't be afraid to ask for another visit to discuss things more if you need to do so. If you need more information about a plan of treatment or a test, ask the provider to give you resources to learn more about it. Finally, always ask when the health care provider would like to see your child for follow-up.
• Ask to meet the office staff who will be working with you and your child (nurses, referral coordinator, billing person, etc.).

After the Visit

• Contact your child's health care provider if you find, once home, that you don't understand her instructions. Many times, the office staff can have the provider return your call, or will take a message and then let you know what the doctor advises. If your child is having any problem with a new medication or treatment, call right away.
• Remember - A parent knows their child better than anyone and should be empowered to be part of the decisions for their child. The child's doctors and health care team need the parent’s knowledge to help them give the best care. Building a partnership means having the health care team listen to the parents about concerns and answer questions.
• The primary care doctor provides the child with comprehensive medical care and non-medical family support such as:
  • Answering questions
  • Sharing decision-making
  • Communicating with other professionals
  • Coordinating care for your child
  • Providing resources and finding out how well they worked
  • Building bridges among families and health, education, and social services
  • Developing comprehensive plans of care that address your individual child’s needs
  • Developing plans for emergencies
  • Monitoring, updating, and following-up on care
  • Respecting your values and culture
  • Promoting health and quality of life for your child and family
  • By working together, you and your child's provider can help your child stay as healthy, safe, and happy as possible.

• Change providers if you cannot work out a way to feel satisfied. Many times, differences between families and providers can be worked out over time. However, if you have not been able to build a helpful partnership with a provider, seek out a provider who better fits your needs. Tell the provider who you are leaving why you want to change. Your input may help them work with other families in the future.
• Practice speaking up on behalf of your child. Many parents feel uncomfortable talking with doctors, afraid of asking stupid questions, or of seeming rude by questioning something the doctor has suggested. Most parents find that speaking up gets easier with practice. Here are some examples of good ways to voice your concerns:
  • Your child's doctor writes a prescription for chewable antibiotics, but your child has a hard time with chewables. Tell the doctor that your child has had problems with chewables in the past, and ask if there are any alternatives. You may also ask the doctor to make a note in his file that chewables are not a good option. That way, anyone looking at his record in the future will also know.
  • You have received a letter from your health insurance denying payment for services you know should be covered. Take a deep breath and call the insurance company. Explain to them, "I have a bill and a denial in front of me. Can you help me figure out exactly where the problem is?" By appealing to the person on the other end of the phone, rather than getting angry, you have a better chance of getting to the root of the problem. Ask your doctor's office staff for help, too—they may even call the insurance company for you. Sometimes the problem is the doctor's use of an incorrect procedure code or a diagnosis code that is not recognized by the insurance company.
  • Your child has just been scheduled to have blood drawn for the second time in one week. The doctor may not know or remember all of the details at first, but you can help to remind her. "Did you know he already had some tests done this week? Can we get any of the information you need from previous tests?" Talk with your doctor's office about scheduling appointments and tests together to save time. Often the nurse or the administrative staff can be very helpful. Ask your doctor to try to work with other involved doctors to see if it may be possible to coordinate lab tests to save on time and stress.
  • The doctor has quickly written a prescription for a medicine you know is very costly. Let the doctor know that it is really expensive and ask if there is a generic brand that could be prescribed instead, or ask if they have any samples you can take home. You can also call your pharmacist for help--sometimes there isn't a less expensive option, but often there are alternatives. There are also financial assistance plans for certain situations. Don't be afraid to ask for help.