PARENT'S GUIDE TO
DOCTORS, DISABILITIES, AND THE FAMILY
By Suzanne Ripley
What Exactly Does a Primary Care Physician Do?
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
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.
How Do You Find Such a Person?
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
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 child s 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
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 organizations 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.
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.
What Happens if You Use a Public Health Clinic?
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
specialty 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 specialty clinic would still be followed
by the original or well-baby clinic for routine needs, shots, well
baby visits, and common childhood illnesses.
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.
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.)