Finding a Primary Care Doctor for Your Child with a Disability
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:
- They will provide general health care to your child, such as immunizations, annual physicals, and care when your child has a general illness, such as the flu or strep throat.
- They are the first doctor that you can go to when your child is having a problem. Usually, it is easier to get an appointment or talk with your primary care doctor on the phone than it is to contact a specialist.
- They can help you when considering tests, treatments, or surgeries that are recommended by your child's other doctors.
- They can help you sort the differences in opinions among your child's specialists. A good primary care doctor will often step in and coordinate the care for your child when many doctors are involved.
- They may have experience with working with children with disabilities and may be able to handle care issues that are often taken care of by a specialist. For example, if a child has a g-tube with no complications, there may not be a need for a gastroenterologist. The primary doctor may choose to manage the g-tube issues and consult a gastroenterologist only when needed.
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.
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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:
- What are your child's most important needs?
- Does it matter if the doctor's office is close to where you live?
- Do you need an office that is wheelchair accessible?
- Do you need a doctor that you can get in touch with at any time of the day or night?
- Do you prefer an office that has several doctors, or do you want just one doctor to care for your child?
Once you have a list of your expectations, you can begin looking for a primary care doctor. Here are some ways to find one:
- Ask other families who have a child with a disability.
- Contact local disability organizations, such as parent-to-parent organizations and organizations for specific disabilities.
- Ask your local Children's Hospital or your child's specialist for a referral.
- Use the on-line search for pediatrician and pediatric specialists of the American Academy of Pediatrics - Parenting Corner Web site.
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.
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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:
- Give a brief history of your child and the type of disability that he or she has. Explain your child's unique needs and current issues.
- Ask if he or she has experience in working with children who have needs like your child's.
- Ask questions from your list of expectations.
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:
- Would you be comfortable working in a medical team situation with the other doctors who care for my child?
- Can you schedule extra time for appointments when you see my child?
- Who sees your patients when you are not available?
- Which hospital do you use for your patients?
- How does your office handle after-hours emergencies?
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.
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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.
- Organize your questions before the appointment or before you call the doctor's office. Be specific about what is happening with your child. Write down what the doctor or nurse tells you as they are telling it to you. If you do not understand an explanation, ask again until you fully understand.
- Work together as a team to solve your child's medical problems. You are the person that best knows your child's needs and your doctor is the person who best knows what is available to help your child.
- Make sure that respect is happening both ways. Just as you appreciate it when a doctor respects your time, do the same for him or her. For example, if you know that you need to schedule a longer visit than usual, be sure to tell the scheduler when you make the appointment.
- Keep your doctor notified of any changes that your child's other doctors have made to your child's treatment, or when your child is hospitalized. Although most specialists will send a report to the primary care doctor, the report may take weeks or months to be sent.
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.
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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.
- A Parent's Guide to Doctors, Disabilities, and the Family (National Dissemination Center for Children with Disabilities)
- Communicating with Your Doctor, Part I (Family Caregiver Alliance)
- Communicating with Your Doctor, Part II (Family Caregiver Alliance)
- "Finding a Physician for a Child with a Disability," brochure produced by The Arc of Lucas County and the Family Information Network. Printed February 1999. Contact information: One Stranahan Square, Suite 540, Toledo, Ohio, 43604-1900, telephone 419-242-9587.
- Working With Professionals: The Parent/Professional Relationship (ParentPals.com)
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