Trisomy 21 (Down Syndrome) Resources

For Parents and Caregivers

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

The “About Me” flyers for trisomy 21 patients are fully customizable and helpful when interacting with the medical team.

Mom holding child

The Trisomy 21 Parent Peer Program provides support and resources to families of individuals with Down syndrome by matching them with fellow caregivers.


Insurance and Finances

Safety for Your Special Needs Child

Children with Down syndrome and autism have a much greater chance of wandering, increasing their risk of a variety of injuries. Find tips to limit wandering.

Transition Tips for Young Adults

Individuals with Down syndrome can use this worksheet to gather information about their different medical issues, celebrate their strengths, and identify skills they need help with.

This quick reference card for children with special healthcare needs lists your child’s primary care provider, pharmacy, case worker, medications and allergies, and more.

Young adults with special healthcare needs should always carry a contact card with emergency contact information, doctor’s name and number, and a list of medical conditions.

Help your child with Down syndrome learn about the value of money, set guidelines for spending and goals for saving, and how to keep track of their financials.

Organize your records and current healthcare providers — including why you see each person — and plan for who will take over that element of your care in adulthood.

After your visit, create a report card to evaluate the interaction between yourself and your doctor, describe what went well, and what to do differently next time.

Young adults with Down syndrome can use this letter template to communicate with their doctor and get involved in making decisions about their own healthcare.

Identify short- and long-terms goals related to healthcare, education, employment, transportation, social/recreation, daily living and adult living arrangements.

This chart helps teens and young adults with trisomy 21 take charge of their health by keeping track of their specific diagnoses, doctors, medicines and treatments.

Young adults with trisomy 21 can use this preparation sheet to write down any questions or concerns they want to discuss with their doctor at their next visit.

Evaluate your comfort level performing skills needed in adulthood, such as personal care, social and organizational skills. The checklist can help individuals with disabilities practice skills and prepare to become more independent.

Young adults with intellectual or developmental disabilities can review this checklist the night before a doctor’s appointment to encourage planning and organization.


The CHOP Community Resources database offers families and professionals the opportunity to see what resources for children with disabilities and illnesses are available in the region and, in some instances, across the country.

Down Syndrome Pregnancy, Inc. is a nonprofit New Jersey corporation that provides information and support to expectant parents preparing for the birth of a baby with Down syndrome.

DSRF investigates best practices and initiates and participates in research studies to gain a better understanding of the learning styles of individuals with Down syndrome.

The website offers news and information for patents and professionals from a pediatrician who is the father of a child with Down syndrome.

NADS provides information about Down syndrome, including publications, videos, online discussion forums, conferences and seminars for families and healthcare professional.

The National Down Syndrome Congress (NDSC) is a national advocacy organization that provides information and support concerning all aspects of life for individuals with Down syndrome.

The National Down Syndrome Society is a leading human rights organization for all individuals with Down syndrome, involved in research, advocacy and education.

This network empowers and supports parents across Pennsylvania by connecting them with families of children & adults with special needs or disabilities who’ve had similar journeys.

It provides information to families in PA regarding special health issues and community resources. It also links families facing similar experiences together.

Woodbine House is a publisher of books on special needs topics that you can order directly from the publisher.