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A primary care doctor is a doctor who helps people with general health care, and is most often the first doctor a person sees. The primary care doctor for children is usually a pediatrician. For families who have children with disabilities, it is sometimes hard to find a primary care doctor who has experience with their child's unique needs and health problems. This section provides information on how to select a primary care doctor for your child with a disability.
This article contains links to other resources and organizations that may be of assistance to people with disabilities. The Ohio Legal Rights Service (OLRS) attempts to verify that the links referenced are helpful for people with disabilities. However, OLRS does not guarantee that the information provided within the destination link is accurate or right for the particular needs of the person. Once you follow a link away from the OLRS Web site, refer to that site's privacy policy and disclaimer statements.
Children with disabilities often require a team of physicians. For example, a child with multiple physical and mental disabilities may have a neurologist for seizures, an orthopedist for bone and muscle growth issues, a physiatrist for rehabilitation (physical medicine) issues, a pulmonologist for respiratory problems, an otolaryngologist for ears/nose/throat issues, a gastroenterologist for g-tube and digestive disorders, and more. With all of these specialists already taking care of a child, families often wonder why a primary care doctor is needed.
Primary care doctors who care for children with disabilities are important because:
Overall, the importance of having a primary care doctor is because it creates a central place for families to come to when their child needs medical help. This is also called a "medical home." A medical home is established when one professional, usually a pediatrician (the primary care doctor), serves as the central coordinator of care for a child's medical and emotional service and support needs. To learn more about the Medical Home, visit the National Center of Medical Home Initiatives for Children with Special NeedsLearn more about the Medical Home Web site.
The first step to finding a primary care doctor is to list the things you expect from a doctor. Here are some things to consider:
Once you have a list of your expectations, you can begin looking for a primary care doctor. Here are some ways to find one:
Although most pediatricians are able to provide care for children with disabilities, there are also doctors called "developmental pediatricians" who have received specialized training in caring for children with disabilities. You can check your telephone book for doctors listed as developmental pediatricians or contact a pediatric neurologist, child psychiatrist, or the department of pediatrics of your local hospital for names of developmental pediatricians in the area where you live.
Once you have a list of referrals, begin contacting each doctor's office. Instead of making an appointment, talk with one of the office's nurses to see if the doctor provides care for children who have needs like your child. If the answer is "yes," ask if you can set up a time to speak with the doctor by phone. When you speak with the doctor, talk about the following:
If you are comfortable with the answers the doctor has given you, make an appointment for the doctor to meet you and your child. It's important to meet with the doctor as soon as possible, rather than waiting for when a medical emergency happens. When you meet the doctor, here are some questions to ask:
In addition to asking questions, also observe how the doctor interacts with your child. Does the doctor feel comfortable communicating with your child? Is he or she accepting of your child's unique behaviors and disability? Do you feel comfortable talking with the doctor? Does the doctor take time to answer all of your questions, or do you feel like the doctor is in a hurry? How comfortable you and your child feels is very important.
The relationship between you and your child's doctor is very important. Creating a positive relationship helps you and the doctor work toward the best care possible for your child. The following are some suggestions for a successful parent/doctor relationship.
Even after choosing a primary care doctor for your child, it may take several months to find out if the doctor is right for your child's needs. Over time, you will find how well the doctor responds to your child's medical issues, and how comfortable he or she is with caring for your child. You will also find how well the office staff respond by the way your questions and phone calls are answered and how you and your child are treated when you come to appointments. If you do not feel comfortable with the care your child is receiving after several months, it may be best to choose another primary care doctor.
The following links go to other Web sites and resources that provide information about finding a primary care doctor for your child with a disability.