The Down Syndrome Program at Boston Children’s Hospital offers comprehensive services for parents and children with Down syndrome from newborns to age 22. We individualize our services to meet the needs of each family.
New patient intake process
Our program sees people with Down syndrome from birth to age 22. Please note: New patients who are 17 to 22 years old will be seen for a one-time consultation only.
We ask all families to complete and submit the following information:
- intake form
- list of providers
- copy of child’s IFSP or IEP
- records from all non-Boston Children’s Hospital providers
Completed materials are reviewed by our triage team monthly. Our typical wait time for new visits is between six and nine months.
Please contact us to initiate the intake process by emailing email@example.com. You may also initiate the process by submitting an online request.
Comprehensive clinical visits
Children, adolescents, and young adults are seen over time for comprehensive visits addressing medical and developmental issues. The Down Syndrome Program uses an interdisciplinary approach to provide highly specialized medical services and individualized care of complex challenges for people with Down syndrome. The program offers specialized evaluation and treatment of neurodevelopmental, behavioral, and mental health conditions, such as autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), communication challenges, behavioral issues, and developmental regression, as well as complex medical care needs.
Comprehensive neurodevelopmental and behavioral assessments and carefully designed psychological testing are available to assess current levels of functioning, clarify neurodevelopmental diagnoses, and create an appropriate treatment plan of therapies and educational interventions for optimal development. Behavioral consultation and treatment is also available for families. When clinically indicated, a coordinated team visit can be arranged with a psychology assessment and a medical evaluation on the same day.
Intensive care coordination and specialty care
The Down Syndrome Program offers individualized and intensive care coordination to assist families in accessing services, appointments, and resources. Care is coordinated with many of Boston Children’s Hospital’s top specialty programs and providers, such as cardiology, neurology, gastroenterology, nutrition, sleep medicine, ophthalmology, dentistry, orthodontics, otolaryngology, audiology, and more. Lab visits can also be arranged at any of the Boston Children’s Hospital locations. Child Life support can be coordinated as needed at some sites.
New baby appointments
Families of newborns or young babies are welcome to come in for a "new baby visit," during which a clinician will review medical history, discuss development, provide education, and answer family questions. New baby visits are considered an introductory visit to the Healthy Beginnings team for children younger than age 3.
Healthy Beginnings Team
The Healthy Beginnings Team cares for children from 6 months to 3 years old and provides a comprehensive evaluation using a multidisciplinary team approach. In this clinic, young children have individual appointments with specialists in developmental pediatrics, physical therapy, and speech language pathology with expertise in feeding and swallowing, and a hearing screen with a pediatric hearing specialist (audiologist) for those who need it. Children are seen by this team every six months.
Down Syndrome and Autism Spectrum Disorder Team (DS-ASD Team)
Children with Down syndrome are at increased risk for having a co-occurring diagnosis of an autism spectrum disorder (ASD), with current estimates of up to 18 to 20 percent. The DS-ASD Team provides comprehensive, family centered diagnostic and care services for children with concern for ASD. Depending on needs, visits are coordinated with other subspecialists. Our team can refer children to receive occupational therapy, physical therapy, and speech and language therapy, as well as augmentative and alternative communication (AAC). Families are also provided with intensive care coordination and support accessing resources through our program coordinator and resource specialist.
Regression and Down syndrome disintegrative disorder (DSDD)
Individuals with Down syndrome, particularly adolescents, may experience an increasingly recognized phenomenon of developmental regression in which previously established skills are lost. Developmental regression can result in severe functional deterioration that severely impacts quality of life, participation in school and community, and family functioning. Individuals with regression may have a decrease or loss of language and adaptive skills, social withdrawal, motor decline, or onset of abnormal movements, personality, and behavioral changes, and sleep disturbance. Boston Children’s Hospital offers a multidisciplinary team of specialists that includes neurologists and neuro-immunologists, psychiatrists, developmental behavioral pediatricians, and psychologists who collaborate to provide state-of-the-art diagnostic techniques and individualized treatment for patients and support for their families. The Down Syndrome Program will help to coordinate your care needs and provide support from our Program Coordinator and Resource Specialist.
Group education opportunities
The Down Syndrome Program has added a new innovative group education model during some clinic days. Parents/caregivers have the opportunity to come together as a group and learn about a specific topic of interest or resource being highlighted that day. This learning opportunity is open to all and is set up around the clinic visit. Topics may include subjects like early literacy, promoting healthy lifestyles, transition, social skills, and more.