The Trisomy 21 Program

Organizing Your Child's Care

In caring for your child with Down syndrome, you may get information and paperwork from many sources. The Children's Hospital of Philadelphia and the Trisomy 21 Program offer a number of resources to help you better organize your child's care.

As your child grows

Use these links to get age-specific information. These checklists and resources can help you better organize your child's care, know what questions to ask, what tests to request and how you can work with your child's healthcare team to provide the best quality of life for your child.

From birth

When your child is born and diagnosed with Down Syndrome, it can be overwhelming. The Trisomy 21 Program has put together a checklist to ensure your child receives all of the help and support he or she needs. For information about early intervention, applying for supplemental security income and medical assistance, see organizing your childs' care: from birth.

From 3 months+

We've put together a checklist of pediatric specialists and medical tests you should consider as your child grows. Children with Down syndrome are more likely to have cardiac, hearing, sight and other issues. By evaluating your child early, you can get your child whatever help is needed. See organizing your child's care: from 3 months+.

Transitioning to adult care

The Trisomy 21 Program has put together tips to help young adults with Down syndrome transition to adult care. See transitioning to adult care.

Financial planning

To help you plan for the financial future of a family member or friend with special needs, read create a special needs trust.

Care Binders

A Care Binder can help your organize the most important information in a central place and share key information with members of your child’s care team.

See care binders for downloadable Care Page templates including healthcare provider letters, things I don't want to forget, medical emergency information forms, appointment and medication logs, family health history, service providers and more. These resources can be downloaded and printed out in English and Spanish.  

For more information

We are here to help. Please contact the Trisomy 21 Program at 267-426-5283 or trisomy21@email.chop.edu.

 

Date: October 2012

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