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- Call Montgomery County Early Intervention when your child
arrives home from the hospital at 610-277-7176. Early Intervention
will set up a time for your child to be evaluated in your
home by a team of therapists. They will then make recommendations
for the types of therapies your child needs based on their
assessment. Therapists will contact you to set up a time
to meet with you and your child regularly in your home.
Please be aware that this process can take a few weeks to
get established so be patient
. This and the therapies are no cost to you and are conducted
in your home or daycare!
- You may ask for a social worker as part of your Early
Intervention services. A social worker can give you information
about the opportunities and services which are available
to your child and can help you obtain those services. They
will act as an advocate for you and your child.
- If you feel that your child isn't getting the necessary
therapies, voice your concern. Many times Early Intervention
will give them to you. Most of our families get Occupation,
Speech, and Physical therapies. Some people get Feeding,
Behavioral and therapies as well as a teacher.
- You may want to make an appointment to see a genetic counselor.
They will evaluate your child and provide you with information
about Down Syndrome. They will also be able to tell you
what type of Trisomy 21 your child has by examining the
chromosome test that was used to confirm the diagnosis of
Down Syndrome. Knowing what type of Trisomy 21 your child
has may be helpful in planning future pregnancies. Your
child's doctor in the hospital may be able to set this appointment
up for you right away. The number for the genetic counselor
at CHOP is 215-590-2920.
- Apply for a Medical Access Card. This will help you
get government paid for health insurance, baby formula,
etc. It also helps your school district or county to pay
for your services. You can obtain an application from
Early Intervention, a hospital social worker, or a physician
at the hospital. At the present time, your child is eligible
for supplemental health insurance as well as WIC (Women,
Infants and Children), regardless of your income. The Medicaid
insurance covers copays and other additional expenses that
may not be covered by your primary insurance. WIC will allow
you access to formula for infants, and specific food for
older children. You will need to provide a letter stating
your child's diagnosis from your pediatrician. It is a good
idea to make copies of this letter for future reference.
- You may want to make an appointment with a developmental
pediatrician who specializes in Down Syndrome. At this appointment,
your child will be evaluated. Recommendations may be made
for further testing in some areas of development, for evaluations
by specialists you have not yet seen, or for additional
therapies or evaluations by therapists. It is informative
and helpful to get the perspective of someone who specializes
in children with Down Syndrome. It can be essential in coordinating
care between the important persons handling your child's
needs. The number for the Developmental Pediatrician at
the Trisomy 21 Clinic at CHOP, Dr. Pipan is 267-426-5283.
(Note, there is a lengthy waiting list for an appointment
with Dr. Pipan so it is advised to make this call when the
child is about three to six months of age).
- Each time your child sees a specialist, ask them to mail
a copy of their report about the visit to you at home and
to your child's pediatrician. You will receive a lot of
information at each visit and will often have follow-up
visits with the same specialists. It is recommended to have
this information in writing as a reference. You will also
want to make copies of each report for the developmental
pediatrician so you will be able to accurately relay details
about your child's care. This will aid you, your pediatrician,
your developmental pediatrician and your specialists to
coordinate care for your child.
- Contact the Montgomery County Down Syndrome Interest Group.
We can answer your questions or put you in contact with
someone who can answer your questions. We can also try
to put you in touch with a family who is similar to yours
(dealing with same medical issues, have children same age,
live close by). Call Rose Townsend at 610-754-1483.
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