Down Syndrome Resources for Patients and Families

We provide up-to-date information that supports families who have received a Down syndrome diagnosis. The Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado collaborates with many other associations and advocacy groups to gather that information and promote understanding of Down syndrome.

Below, you’ll find details on our partner organizations, support groups and other informational resources for families of children with Down syndrome.

Global Down Syndrome Foundation

The Global Down Syndrome Foundation is part of a network of affiliate organizations that includes the Sie Center, Linda Crnic Institute for Down Syndrome at Anschutz Medical Campus and the Global Adult Down Syndrome Clinic at Denver Health. The Foundation’s goal is to significantly improve the lives of people with Down syndrome through research, medical care, education and advocacy. They offer informational resources, events, advocacy opportunities, news and more.

Down syndrome patient support groups

Below you’ll find local, regional and national Down syndrome support groups.

• National Down Syndrome Congress
• National Down Syndrome Society
• Rocky Mountain Down Syndrome Association
• Colorado Springs Down Syndrome Association
• Northern Colorado Down Syndrome Association
• The ARC of Colorado
• Wyoming Down Syndrome Association
• Black Down Syndrome Association

Recreation and fitness resources

• Adams Camp: These therapy and adventure programs are designed and delivered by dedicated therapists and counselors who help children, youth and adults with special needs reach for the stars. They also have sibling and parent offerings that address the needs of the entire family.
• Kids Mobility Network: This nonprofit organization provides Colorado children who have disabilities with complex rehab technology and therapeutic recreation equipment such as wheelchairs, standers, adaptive bikes, activity chairs and other medical equipment.
• Special Olympics Colorado: The mission of Special Olympics is to provide year-round sports training and athletic competition in a variety of sports for children and adults with intellectual disabilities. These activities give them opportunities to develop physical fitness, demonstrate courage, experience joy and share gifts, skills and friendship.
• National Sports Center for the Disabled: This is Colorado’s most comprehensive provider of adaptive outdoor experiences offering a wide variety of programs across the state.
• iCan Shine: iCan Shine is an international charitable nonprofit organization. They collaborate with local organizations and individuals to conduct approximately 100 five-day ‘iCan’ programs in 35 U.S. states and Canada, serving nearly 3,000 people with disabilities each year. This includes biking, swimming and dancing.
• TOPSoccer: TOPSoccer, the outreach program for US Youth Soccer, is a recreational sports program for children and adults with intellectual, emotional or physical disabilities. TOPSoccer provides people with diverse abilities an opportunity to play soccer in a structured environment that is safe, fun, supportive and inclusive.
• Easterseals Colorado: Children and adults with disabilities and special needs find exceptional services designed to meet their individual needs when they go to Easterseals Colorado. Teams of therapists, teachers and other health professionals help participants overcome obstacles to independence and reach their goals.

Down syndrome medical and insurance resources

Insurance resources

• Health First Colorado Buy in Program for Children with Disabilities
• Supplemental Security Income (SSI)

Medical Resources

• American Academy of Pediatrics Health Checklist for Families
• Global Down Syndrome Foundation Medical Care Guidelines for Adults with Down syndrome
• GLOBAL Pilot Adult Down Syndrome Medical Clinic at Denver Health

Down syndrome education and professional resources

Down syndrome education and engagement resources for young adults

• Higher Visions for Education (Colorado): Higher Visions for Education (HVE) is continuing education for adults with Down syndrome designed to enrich their independent living and social skills. HVE explores a variety of topics to learn and practice important life skills and concepts in a fun and meaningful way.
• IN! Pathways to Inclusive Higher Education (Colorado): This expanding network of colleges and universities across the state of Colorado strives to create inclusive college opportunities for students with intellectual disabilities to foster academic growth, social development and career advancement.
• Think College: Think College provides assistance, training and resources related to higher education options for students with intellectual disabilities.
• Division of Vocational Rehabilitation: This division provides many services to help people with disabilities find a job and thrive in their workplace.
• Colorado Office of Employment First: This office provides training and career resources to boost equitable employment in Colorado for all people with disabilities.

Speech and language

• PrAACtical AAC: This organization supports a community of professionals and families who are determined to improve the communication and literacy abilities of people with significant communication difficulties.

Down syndrome patient and family journey

• Parent to Parent: Parent to Parent helps provide quality emotional support for families of individuals with disabilities or special healthcare needs.
• Down Syndrome Pregnancy: Down Syndrome Pregnancy provides honest, compassionate, medically reviewed and informative support for those preparing for the birth of a baby with Down syndrome.
• Down Syndrome Diagnosis Network: The Down Syndrome Diagnosis Network supports new and expectant parents with a Down syndrome diagnosis and their medical caregivers with accurate information and helpful connections.
• Prenatal testing and information about Down syndrome: Get accurate information from some of the leading Down syndrome organizations in the country.
• Guardianship Alliance of Colorado: Guardianship Alliance of Colorado provides comprehensive guardianship services to protect the rights and dignity of vulnerable adults.
• HCP Care Coordination Program for Children and Youth with Special Health Care Needs: These nurse-led teams provide care coordination for Colorado children and youth with special healthcare needs from birth to 21 years.
• Family Voices: Family Voices gives parents the information and knowledge they need to navigate complex healthcare systems and access things like wheelchairs, oxygen or surgery for their children.

Handouts

• Constipation in Children with Down Syndrome / El estreñimiento de los niños con síndrome de Down
• Feeding and Swallowing Needs at School / Necesidades de alimentación y deglución en la escuela
• Transition Booklet  / Transiciones

En Español

Grupos de apoyo de habla hispana:

• El Grupo Vida: El Grupo Vida es una organización sin fines de lucro dedicada a ofrecer apoyo, educación y recursos a familias hispanas y latinas en temas relacionados con la discapacidad, la educación especial, el liderazgo comunitario y la transición a la vida adulta.
• La Fundación John Langdon Down: La Fundación John Langdon Down es una institución de vanguardia en México y el mundo, dedicada a ofrecer atención educativa, médica y psicológica a niños, adolescentes y adultos con síndrome de Down, así como a sus familias. Fundada el 3 de abril de 1972 en la Ciudad de México por la maestra Sylvia G. Escamilla, la fundación es sede de la Escuela Mexicana de Arte Down y creadora de la cadena de cafeterías "Tres 21 Arte Café".

• National Down Syndrome Congress: El Congreso Nacional del Síndrome de Down (National Down Syndrome Congress, NDSC por sus siglas en inglés) es una organización sin fines de lucro fundada en 1973. Está gobernada por una mesa directiva compuesta por veintidós padres, familiares, personas con síndrome de Down y profesionales comprometidos con el bienestar de quienes tienen esta condición. El NDSC trabaja para promover los mejores intereses de las personas con síndrome de Down y sus familias, a través de la difusión de sus derechos, la sensibilización social y el suministro de información sobre todos los aspectos relacionados con el síndrome de Down.

Additional Down syndrome patient resources

• A multidisciplinary team helped Maddox's family develop an in-home care routine to help end midnight runs to the hospital.
• The Linda Crnic Institute is enabling precision medicine approaches to improve health outcomes in Down syndrome.