The Trisomy 21 Program

Organizing Your Child's Care: From Birth

Learning that your child has Down syndrome can be overwhelming. This checklist was developed to help guide you through the first steps.

Contact the Trisomy 21 Program

The Trisomy 21 Program assesses the growth and development of children with Down syndrome. Our team offers physical, occupational and speech therapy evaluations, and social work consultations. We will review your child’s medical history, therapies and medications as well as his mental health, social, educational and medical needs.

We will make recommendations based on our findings and make sure your child is up-to-date on all recommended testing. We do NOT replace your primary care provider or any specialist, but we are happy to work with them in order to provide your child with the best possible care.

Please call the Trisomy 21 Program Coordinator at 267-426-5283 (option 1) at any time to complete an initial intake.

Register for early intervention

Early intervention (EI) is a group of services provided to children who may have developmental delays. The services most common for babies with Down syndrome are physical therapy, occupational therapy and speech therapy.

Apply for Supplemental Security Income (SSI) and Medical Assistance

Supplemental Security Income (SSI) is money provided by the Federal Government to help people with disabilities. The amount of money provided is based on family income.

Medical Assistance (MA) is health insurance and it will help cover at least some of your child’s medical costs. If your child has private health insurance, MA can be back-up insurance to cover costs that are not covered by your primary insurance. MA may also cover therapy that is not provided through early intervention. In addition, MA provides Pennsylvania families with special needs coordinators who will help you understand the healthcare system.

Contact CHOP’s Department of Family Health Coverage at 1-800-974-2125. A coordinator who works with families from Pennsylvania, New Jersey and Delaware will walk you through the entire process.

Take a copy of the following to your child’s primary healthcare provider

What's next?

For infomation about organizing your child's care as they grow, see our checklist for 3 months+ and transitioning to adult care.


Date: October 2012

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