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Q: What is a
developmental disability?
A: The term “developmental” speaks to how a child develops or learns;
the term “disability” describes how a child is able to function in
day-to-day life in moving about, in learning and in communicating. So, the
term “developmental disability” describes the situation when a child has
difficulty in doing things that other children find easy. It is not the
child’s fault, but just that the child does things differently and at a
different rate than his peers.
Q: At what point should a parent consider going to a specialist for an
evaluation?
A: Parents should consider having their child evaluated when they are
worried that their child is not developing at the same rate or in the same
way as other children of the same age. The parents should speak to their
pediatrician, who can help them find the right specialist. Sometimes other
parents who have had the same experience can also help. If there is nothing
to worry about, the specialist will tell them. If there is something wrong
or different, then it is best to determine the issue and start with
treatment or therapy early so that the child has a better chance of
developing to his or her fullest potential.
Q: What types of ongoing follow-up might be recommended?
A: There is no set schedule for follow-up – it depends on the
specialist, the diagnosis, the course of evaluation and therapy that is
selected, and your child’s response to treatment. When specialists see a
child, they will offer an understanding of the problem, what to do about it
and what to expect. Sometimes they will be able to identify a cause and
discuss the implications. After the initial evaluation, the specialist may
refer your child for more tests or for further evaluation by other
specialists. The original specialist may then want to see your child and
family again to get a better understanding of your child and his problems.
When the specialist suggests therapy, then the specialist will want to see
how your child is responding and how the development is proceeding.
Q: When searching for a primary care physician, how can families ensure
that this professional has the knowledge and sensitivity about their child’s
developmental issues?
A: When looking for a pediatrician it is helpful to speak to other
parents who have children with similar problems. It is important that you
have a good relationship with your pediatrician, as strong communication is
an integral part of your child’s care, and this comes with time and
experience. If things do not seem to be right, parents should trust their
feelings and look for another pediatrician who might suit them better.
Q: Who should be involved in the child’s developmental health care team?
A: This depends on your child’s specific problems. If he has
developmental problems that relate to learning and communication, he will
need teachers and speech therapists. If the problems relate to behaviors, he
may need psychologists or behavior specialists. If your child has problems
with movement or posture and coordination, there is a need for a physical
and/or an occupational therapist. If your child has medical problems, other
medical specialists may be involved. When a child has multiple and complex
medical and developmental problems, there will usually be a need for several
therapists, teachers and medical specialists to be involved in the child’s
care. In order for your child to perform to his full potential, ongoing
monitoring with periodic assessments or evaluations may be necessary.
Q: When a child has multiple experts involved in assessment and
treatment, who should coordinate all of the care – the specialist, the
pediatrician or the developmental pediatrician?
A: The care of a child with complex medical issues should be followed
carefully. The most logical professional to follow the care is his/her
developmental pediatrician. If you don’t have a developmental pediatrician,
identify the specialist that is most involved in your child’s care to
perform this coordinating task, and/or appoint your primary care
pediatrician.
Each state has a Title V program – in Georgia it is called “Children’s
Medical Services” – and this program has official coordinators who provide
this service.
Also, some hospitals or multidisciplinary clinical programs have designated
coordinators who fill this role. If there is not anyone officially
performing as a coordinator, you should try to identify one of the providers
of services mentioned above, including a specialty service provider with
whom they may have regular contact to help in this role.
Dr. Rubin is the Director, Division of Developmental Pediatrics &
Associate Professor of Pediatrics, Emory University School of Medicine;
Medical Director, May South; Co-Director of the Southeast Pediatric
Environmental Health Specialty Unit at Emory University; Co-Investigator on
research projects involving ADHD and aging adults with Down syndrome;
Director of Training, Marcus Institute.
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Parents should
consider having their child evaluated when they are worried that their child
is not developing at the same rate or in the same way as other children of
the same age.
Read more of Dr. Leslie Rubin's advice. |
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