Down Syndrome Resources for Families: Health, Support and Community

Whether you received a Down syndrome diagnosis before your baby was born, at birth, or you are a grandparent, sibling or caregiver looking to learn more, you are joining a large and welcoming community. This guide brings together trusted Down syndrome resources for families, from health care to school to finding other parents who understand.

Trusted National Starting Points

NIH Down Syndrome Consortium: Resources for Families

The Down Syndrome Consortium, coordinated by the National Institutes of Health's Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), gathers resources for people with Down syndrome, their families and caregivers. You will find health care guidance across the lifespan, including prenatal and newborn care, pediatric health supervision, growth charts, oral health, aging and Alzheimer's disease, plus glossaries in English and Spanish and links to member support organizations.

Best for: reliable, research-based health information.

National Down Syndrome Society (NDSS): Caring for Your Family

The National Down Syndrome Society is a national advocacy organization. Its Caring for Your Family resources help parents and caregivers with everyday questions across the lifespan.

Best for: family guidance and national advocacy updates.

National Down Syndrome Congress (NDSC): Local and National Support Networks

The National Down Syndrome Congress helps families find local parent groups and national support networks, and shares news and resources for families.

Best for: finding a local Down syndrome parent group.

Health Care at Every Age

People with Down syndrome are more likely to have certain health conditions, so regular screening matters. Your child's pediatrician can follow the American Academy of Pediatrics' health supervision guidelines for children with Down syndrome. Regular checks commonly include the heart, hearing, vision and thyroid.

Health needs change with age. Adults with Down syndrome have a higher risk of developing Alzheimer's disease at a younger age than the general population, so it helps to have a primary care provider who knows that and tracks changes over time. The NIH resources above include guides for aging adults and their caregivers.

Tip: Keep a one-page health summary listing diagnoses, medications, specialists and recent test results. Bring it to every appointment, especially with a new provider.

Early Intervention and School

Under the Individuals with Disabilities Education Act (IDEA):

• Birth to age 3: Early intervention programs (IDEA Part C) can provide services such as physical, occupational and speech therapy, often at home. Ask your pediatrician for a referral or contact your state's early intervention program directly.
• Ages 3 to 21: Your school district provides special education and related services through an Individualized Education Program (IEP).

New to IEPs? Read our family guide to navigating the IEP process, and find free help from your state Parent Center in our special education resources guide.

Find Your People

Many parents say the most helpful resource was other parents. Local Down syndrome parent groups (find one through the NDSC network) often offer:

• New and expectant parent support, sometimes with a parent mentor
• Playgroups, family events and social activities
• Sibling and grandparent programs
• Community events such as NDSS Buddy Walks
• Self-advocacy opportunities for teens and adults with Down syndrome

Planning Ahead

You don't have to plan everything at once, but a few topics are worth learning about early:

• Transition to adulthood: Transition planning in the IEP must begin no later than age 16. See our guide to transition planning for adult life.
• Decision-making: Explore options beyond guardianship, such as supported decision-making.
• Financial planning: ABLE accounts and special needs trusts can help families save without affecting eligibility for certain benefits. Talk with a qualified financial or legal professional.
• Caregiver support: Everyone needs a break sometimes. Learn about respite care.

Quick Reference

Keep Health and School Records Together

Between specialists, therapists and IEP meetings, families of children with Down syndrome collect a lot of paperwork. Our guide to organizing IEP and medical records in a digital binder shows a simple system. New Hope Advocacy members can store documents securely and share them with doctors, schools and family members when needed. Explore member features.

We're Here to Help

New Hope Advocacy connects families with agencies, events and tools at every stage of life. Create your account → or contact our team.