A Parent's Guide To Doctors, Disabilities, And The Family

by Suzanne Ripley

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How do families choose a primary health care provider or pediatrician for their child? Specifically, how do families with a child who may have a disability and/or special health care need choose a doctor? How do families work with their pediatrician for the maximum benefit of their child, to locate appropriate specialists, correctly assess their child's needs, and work with the education system? These are questions many families ask. This paper will explore these questions and discuss some possible answers.

Q: How Do Families Choose a Doctor for their Child?

A: Choice of a doctor may vary depending on the size town you live in, whether you live in a rural area, whether you use a private doctor, health maintenance organization, group health organization, public health center, Indian Health Service, or clinic.

You may live in an area where there aren't many doctors to choose from. In such a situation, the primary care physician may be located in another town and serve as a specialist with whom you consult by phone and to whom reports can be mailed. This doctor can advise the family as well as the local pediatrician on evaluations, medications, and other specialists. Families may see their local pediatrician for all routine baby and child health needs but work in a team type situation with the primary care physician who may be a specialist with the University Affiliated Facility, at the state university medical school or at another major hospital either in the state or in another state. For children with rare syndromes or unique medical needs, a specialist may be located quite a distance from the family but still be actively involved in decision making.

The first step in obtaining medical assistance should be the identification and selection of a primary health care provider. This sounds simple enough; yet, an article in Pediatrics, "First Step in Obtaining Child Health Care: Selecting a Physician," (Hickson, Steward, Altemeier, & Perrin, 1988) indicates that parents included in the study did not spend much time or energy selecting a doctor. According to its authors, this study is the first to evaluate the process of physician selection for children. The parents were asked how they selected their child's doctor and what factors were important in their decisions. Fifty-three percent of the families surveyed considered only two or three physicians in their decision; 34% considered only one. They also indicated that an average of only 1.2 sources of information were used in identifying and evaluating potential doctors. The sources most commonly used were talking to a neighbor or friend (44%) and discussing choices with another doctor (21%). Decisions were based primarily on one of three characteristics: communication skills (willingness to share decision making, warmth, concern), accessibility (return calls quickly, quick appointments), and quality of practice as determined by recommendations from friends and family.

Q: Are Families Satisfied With the Doctor They've Chosen?

A: Parents surveyed in this study also were asked why their families changed pediatricians. The most frequently stated reason for changing doctors was the family's perception that the doctor was not managing a specific illness adequately. The second most frequently stated reason was that parents believed their child's doctor or office staff was rude or unconcerned. Third was that they objected to their physician's lack of interest in their child's behavior. The fact that more than 40% of parents who were dissatisfied with pediatricians expressed this complaint reinforces the notion that parents are concerned about psychosocial health, or that perhaps psychosocial health is not addressed adequately in our health system.

Q: What About the Child Who Has a Disability?

A: All families have unique needs. The above study was conducted with families whose children were not identified as having any type of disability. For the child who may have chronic health problems, developmental disabilities, behavioral difficulties or physical disabilities the choice of a primary care doctor must be made with care and thought. The number of parents who were dissatisfied with their pediatrician's lack of interest in their child's behavior, coupled with parents who believed their child's doctor or office staff was insensitive or unconcerned, substantiate the need for extra thought and planning.

Relating to a child whose needs are distinct or unaccommodating can be difficult. Yet, a child needs to be able to communicate with his doctor as well as develop trust and rapport with him. In addition, the child should be comfortable with his medical needs and care. Even young children need to be able to talk with their doctor. Older children and teenagers need to have more involvement in their medical decisions and concerns, and need to feel comfortable talking openly with a physician who understands them. Therefore, it is imperative that the doctor you select manage a two-way communication with the child, accept the child's unique behaviors and disability, look past such impediments, and treat the child with the same concern shown for other children.

Q: What Exactly Does a Primary Care Physician Do?

A: The primary care physician is the medical doctor who coordinates the child's health care needs. This physician treats the whole child, is concerned about the child's health and development, can refer families to specialists and clinics, obtains developmental and psychological evaluations, and helps interpret the results of these tests. This primary care physician can help coordinate the variety of other medical needs by helping to avoid duplicate testing, distinguishing the absolutely necessary from the less important to cut down on discomfort for the child, recommending specialists who are comfortable with your child, and keeping records of all evaluations and their results.

Frequently, the primary care physician is the first professional parents turn to when they are concerned about their child's development. This is the person who can discuss tests, their potential value, the results and then develop a possible prognosis. Unfortunately, no doctor can be expected to know the answers to all your questions, but a physician should be able to openly acknowledge areas he knows less about and be able to say "I don't know," when that's the only answer. This can only be accomplished if the parents are comfortable with the physician, feel he/she is understanding of their unique concerns, and accepting of their child. In the same way, the physician must feel comfortable with the family and know family members are understanding of his/her role in the care of their child.

Q: How Do You Find Such a Person?

A: Clearly, families with a special needs child will have a greater task before them in the doctor selection process than other families. While the survey we've referred to indicates that most families spend little energy choosing a physician, it is none the less an important matter which must be approached in a concerned and methodical manner.

As with all selection processes, the first step is to identify your needs. The following questions may help you pinpoint those needs. What is important to your family in dealing with medical needs? What do you expect? What do you think you need? In what ways are your childs needs different from other children's needs, that is, specifically how is your child unique? Do you need several doctors and therefore need each to be open to discussions with the others? Do you need a doctor more frequently than other families and therefore want someone close to home? Do you need a wheelchair accessible office? Does your child have more complex medical needs than other children or is the major difficulty in the area of development and behavior?

It is important to understand that if your child's needs are significantly different from your neighbor's children, the neighbor's pediatrician may not be the best choice for your child. When seeking personal recommendations for a doctor for your child with disabilities, you may be more successful talking to families whose children are more like your own. Such families can be found in oganizations such as the United Cerebral Palsy, the Epilepsy Foundation, the Spina Bifida Association, Parent-to-Parent, EPICS, or the Learning Disabilities Association of America (formerly ACLD). Perhaps your child is still very young and you don't know other families in your area with children like yours. Families can find a lot of information in the phone book by contacting doctors listed as Developmental Pediatricians. If there are no such listings, contact a Pediatric Neurologist or child psychiatrist or call the Department of Pediatrics at the closest hospital and ask for the name(s) of Developmental Pediatricians. Another resource may be the state university medical school's Department of Pediatrics. If you usually get medical care from a clinic, group, Public Health Department or Indian Health Services, you may want to ask the head nurse there for suggestions. It is important to remember that if your medical expenses are covered by a particular service provider, referral to specialists may need to come through formal channels unless you will be covering all costs yourself.

When asking for a referral to a local pediatrician, there are several important steps. Be sure to request a referral rather than ask for a recommendation; it is difficult if not impossible for someone on the phone to recommend a doctor to someone he/she has never met. In this instance your choice of words is important. A referral is less formal and will net better results. Ask for several referrals if possible to allow you some choices and to place less responsibility on the person making the suggestions. You can say, "I have a child (age) who does not seem to be developing like other children his age. Do you see such children in your practice? Is this an area of interest for you? If not, can you refer me to a pediatrician whose special interest is children with possible developmental difficulties?" (A list of suggested questions is at the end of this article.) Be specific about your child's needs; if this is a child whose behavior is very difficult, be honest about this. After all, you are looking for a doctor who is accepting and comfortable with such conditions.

Q: What Happens if You Use a Public Health Clinic?

A: Families using a clinic or public health facility also can arrange to see specialists. Speak either to the doctor who is seeing your child or to the nurse on duty. Discuss your child's needs and ask about the procedure for being referred for children's specialty services. You may be concerned that your child is not developing normally without knowing the specific needs. This too can be discussed with the doctor or nurse. The names of specialty children's services and the process of assessing them may vary state to state, but basically, a public health clinic can refer a baby or child to one or more speciality clinics. Generally these clinics cover orthopedic needs, seizure disorders, neurological conditions, hearing loss and other special needs. The doctors at these clinics are usually specialists working on an honorary basis and payment is generally on a sliding scale from no payment up to whatever the family can afford to pay. A child who is referred to a speciality clinic would still be followed by the original or well-baby clinic for routine needs, shots, well baby visits, and common childhood illnesses.

In cases where a child may be referred for surgery or treatment at a hospital, the public health clinic should be able to help make arrangements. If the hospital to which the child is referred is not local, plans for transportation, lodging for the parent, and payment can be made.

Many of these services are available through Medicaid, WICC (Women, Infants, and Children's Care), local health department, and state Department of Health. Public Law 102-119, Part H, the Early Intervention Program for Infants and Toddlers with Disabilities, may also cover some of these needs, especially in the areas of developmental screenings, hearing and vision tests, therapy, and family information services. (For more information on PL 102-119, contact NICHCY.)

Q: What are Indian Health Services?

A: Health services for Alaskan natives and Indians who are enrolled in or direct descendants of recognized tribes may be available through the Indian Health Service (IHS). There are basically three types of services, direct care, contract care and urban programs. IHS clinics are located throughout the country, although they are not in every state. Their staff can either provide the medical care a child needs or refer the child to a specialist outside the Indian Health Service. There is no charge to the family for IHS services; the payment is made by the familys health insurance company, if they have one, by medicaid, if the family has applied and been found eligible for medicaid, or by the IHS. The people at IHS can discuss these options with you.

If a child requires specialized medical care not available through the local IHS clinic, then the doctor at IHS can refer the child to the needed specialist. The process for this referral is called Contract Care. This may be based on medical priorities to determine whether the patient should be seen immediately or whether deferred services can be suggested. It may be useful for the family to confirm that the formal Contract Care referral has been made, to insure proper payment. The family should contact the Contract Health Service authorizing official in the service unit where your family is being seen. Contract Care referrals must come from IHS. Obviously a family can seek medical care at other facilities but then they must arrange payments for these services on their own; IHS will cover expenses only when they have authorized the referral.

In situations where the family must travel long distances to needed medical services, staff at the IHS clinic can help make travel arrangements. They may also be able to help with arrangements for overnight stays away from home.

Q: Who Can Use Indian Health Services?

A: There are several important points to keep in mind when using direct care Indian Health Service. First, the family must be eligible. Basically, the criteria are that the individuals are enrolled in a recognized tribe or can prove direct descendancy of a recognized tribe. The family must be in the IHS delivery area. There are situations in which a person may be living somewhere else, for instance a student attending a school away from home may require medical services, and be eligible for IHS.

Adopted and foster children of eligible Indian families, whether or not they are Indians themselves, can receive care through IHS until they reach the age of 19.

Contract Care services through IHS may have stricter eligibility requirements. Individuals using this service must meet residency requirements and have close social and economic ties to their tribe. There may be requirements for filing for medicaid too. Urban programs have distinct eligibility criteria too. If you are not sure if your family is eligible, check with your local IHS.

If you have questions or need help, you can call the closest IHS facility or phone Indian Health Services, Office of Communications in Rockville, Maryland. The number is (301) 443-3593.

Q: How Do Families Interview Doctors?

When you have your list of referrals, begin the process of "interviewing" the prospective doctors. Talking to doctors about their areas of interest is not uncommon; there is no reason to feel uncomfortable about such a process. Begin by phoning the physicians office. Ask to speak to the receptionist or nurse first and ask again if this doctor sees children like yours in his/her practice. If the answer is yes, or if the nurse seems positive about the doctor's interest in children like yours, ask for the doctor to give you a call. Doctors usually set aside some time each day to return calls; be sure to make it clear that this call will take a bit longer than most and that you would like him/her to phone when there is time to talk for about 5 or 10 minutes. Do this for each of the doctors on your referral list.

If your family receives medical care through a clinic, talk to the person in charge to learn how the public health department works with children who need in-depth medical attention. Find out what services are available, how to access them, who is the case manager or keeper of all the records, and the eligibility requirements for all of this. Ask what interagency relationships this clinic has with other health care providers in your state and with the education department, when applicable. If the person you are asking does not know the answers to your questions, ask who on staff is familiar with your needs. If the person you are asking is too busy to talk to you, ask when you could come back or when he/she could phone you so you will have time to discuss your concerns. There are policies for public health clinics to work with other medical facilities to meet the needs of children with unique or chronic health care difficulties. You will need to keep asking questions until you find the person who can make these connections for you. By asking lots of questions, you can learn how to work effectively with your state's and county's public health service to provide all the specialized medical services your child may need.

Q: What Do You Say to a Doctor You've Never Met?

A: When you speak to the doctor, again explain your child's unique needs and your family's expectations. Ask if children like yours are an area of interest to him/her. Ask the most important questions on your list of expectations for a pediatrician for your child. Does he/she have experience with children who have social or behavior difficulties? Does he/she feel comfortable working in a team type situation with other specialists, the family and schools? (A suggested list of questions is listed at the end of this article.) After you have asked these questions to all the doctors on your list, you may want to make an appointment to see the doctor whose responses were most positive and favorable. You will be the one who makes this judgement based on your wants and his/her responses to your questions, and general attitude to your needs. If you would like to first bring your child in for the doctor to examine, then ask if it is possible to arrange an appointment which possibly may last longer than usual. If your child has difficulty waiting and does not do well sitting in a doctor's office, schedule your appointment either first thing in the morning or as the first appointment after lunch. Appointments are made by the receptionist/secretary not the doctor, so be sure to let the receptionist know that your child will not be able to wait comfortably (or you will be uncomfortable controlling your child in a waiting room) and you will take the next available appointment which can guarantee little or no waiting, even if that means setting the appointment weeks in advance. Your stress level is important too, if you do not want to deal with an active child in a crowded doctor's office, then plan your visits in advance and avoid distressing situations.

In clinics there are also times which are less busy. If your child cannot comfortably sit in a clinic to wait for the doctor, talk to the nurse in charge and explain the problem. Ask what times of day are least busy. Frequently the very end of the day is the quietest, since many patients have already left and the staff is interested in finishing appointments for the day.

Q: What Should a Family Do Before the First Visit to the Doctor?

A: This "new" doctor will need information about your child and his/her medical history. Before the first appointment, be sure all medical records are either mailed or delivered to the doctor's office. It would be useful for these records to arrive at least a week before your visit so that the doctor has time to look them over.

If your child has already been seen by specialists, have these reports sent to the doctor too. If your child has educational assessments, send these along as well. The more the doctor knows about your child, the better able he/she is to discuss your concerns.

Requesting that medical records be sent to another doctor is routine. You should not feel uncomfortable requesting your child's records. If your child has already been seeing a doctor, it is always acceptable to request an additional opinion without insulting the first doctor.

You can phone or write to the first doctor's office and say, "I am interested in discussing my child's situation with another doctor to get additional opinions. Please send a copy of my child's records to Dr. (fill in the name) at (give the mailing address)."

You might also make a list of topics for discussion with the "new" doctor. Since many children are shy around a doctor, especially one they've never met before, you may need to bring up problems which the doctor cannot readily see. For instance, if you suspect your child may have a language delay, say so. Then the doctor can try to initiate more conversation from your child to better observe your concerns. If you are worried about possible developmental delays, make a list of things your child does or doesn't do to give the doctor concrete examples of behavior he/she may not be able to observe in the office. If you would like a referral for a hearing screening or vision tests, be sure to mention this. Doctors can conduct preliminary visual, hearing and speech screenings in their offices to help to determine if a specialist is needed.

Credits

May 1990
Volume 1, Number 2
This document was developed by Interstate Research Associates, Inc., pursuant to Cooperative Agreement #G0087C3051 with the Office of Special Education Programs of the U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.