Trisomy 21 Program Resources

Insurance and Finances


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 resource offers 20 transition tips to help your adult child with intellectual disabilities plan a fulfilling life after graduation.

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.

This resource will teach you 21 ways to help your adult child make a successful transition to adult healthcare, including ensuring he has a basic understanding of his medical conditions and tools — such as a medical records binder — to help him keep track of important information.

This resource offers advice about how to help your child join the workforce as a way of boosting their confidence, providing structure and spending money, and enhancing support networks.

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.

Legal plans to protect the interests of a young adult with trisomy 21 can be confusing. This worksheet describes guardianships and power of attorney, and when each may be appropriate.

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.

Learn 21 tips to support your adult child with intellectual disabilities as he builds a more independent life, including deciding when it’s time to move, how to find the right place, and what support is available.

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.

This tool offers tips to help your child research and plan for a college experience, explore local vocational training programs, build self-advocacy and social skills, and match skills, goals and training.

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.


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


Websites

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 is a parent network created by parents of children with special needs to connect parents with other parents or local support groups.

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.


Books