Trisomy 21 Program Resources

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

Learn about special needs trusts and why you might consider creating one for your family member or friend with special needs.

Vision refers to more than an ability to see things close or far away. The eyes’ ability to move and work together as a team are important aspects of vision.

Vision is more than a person’s ability to see things clearly; it also refers to how effectively they process that information and use it effectively. Learn why this can be challenging in Down syndrome – and how parents can help.

https://media.chop.edu/data/files/pdfs/t21-about-me-template.pdf

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

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

http://www.amazon.com/Early-Communication-Skills-Children-Syndrome/dp/1890627275

This book describes the communication delays that are common in children with Down syndrome.

Find information on how to apply for supplemental security income (SSI) for children with disability.

While all children can benefit from learning early swim skills, children with Down syndrome learn best with repetition and by mastering one skill at a time.

While every family should have a home fire safety plan, it's critical if you have a family member with cognitive or physical disabilities.

Letting your child get the benefit of technology — while keeping them safe online — can be challenging. Find internet safety tips.

People with intellectual or developmental disabilities are more likely to be abused by someone they know than a stranger. Education is key to preventing abuse.

Children with Down syndrome may face significant risk of bullying, but you can help them build confidence and learn tactics for handling aggressive behavior.

Individuals with Down syndrome can be trusting, putting them at risk of harm. Alyssa Siegel, MD, offers stranger safety tips for parents and caregivers.

Children with disabilities are two to five times more likely to be killed in pedestrian accidents than their typically developing peers. Find safety tips.

Drowning is the second leading cause of injury-related death in children, and those with cognitive issues like Down syndrome and autism are at greater risk.

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.

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.

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.

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.

Individuals with Down syndrome can use this worksheet to think about and write down resources they may need for a successful transition to adulthood.

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.

This timeline outlines steps that individuals with Down syndrome ages 12 to 20 should take in preparation for the transition to adulthood in New Jersey.

This timeline outlines steps that individuals with Down syndrome ages 12 to 18 should take in preparation for the transition to adulthood in Pennsylvania.

https://apps.chop.edu/about/chop-in-the-community/community-resources/crdb.cfm

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.

http://downsyndromepregnancy.org

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.

http://www.dsrf.org/

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.

http://www.ds-health.com

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

Early intervention (EI) is a group of services provided to children who may have developmental delays.

Early intervention (EI) is a group of services provided to children who may have developmental delays.

Early intervention (EI) is a group of services provided to children who may have developmental delays.

http://www.nads.org/

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

http://www.ndsccenter.org/

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.

http://www.ndss.org/

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

http://www.parenttoparent.org

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.

https://www.health.pa.gov/topics/programs/special%20kids%20network/pages/special%20kids%20network.aspx

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

https://www.woodbinehouse.com/home/

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