Down Syndrome Program | Your Visit

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.

Our program sees people with Down syndrome from birth to age 22. We accept new patients up to the age of 14 years, 11 months. (An intake must be completed and submitted before the child turns 15.) Please note that any former patient who has not been seen in three years is considered a new patient and will need to submit updated paperwork in order to reestablish care with us.

We ask all families to complete and submit the following information:

1. Intake form
2. Copy of child’s IFSP or IEP
3. Records from all non-Boston Children’s Hospital providers

Completed materials are reviewed by our triage team monthly. Our typical wait time for a new patient visit is one year to two years.

Please contact us to initiate the intake process by emailing downsyndromescheduling@childrens.harvard.edu. You may also initiate the process by submitting an online request.

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.

Multidisciplinary Team

The Multidisciplinary Team cares for children from 6 months to 2.5 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, 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.

Comprehensive clinical visits

Children, adolescents, and young adults are seen over time for comprehensive visits addressing medical and developmental concerns. 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 Down syndrome Regression Disorder (DSRD), as well as complex medical care needs.

Psychology supports

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.

Down syndrome and autism (DS-ASD)

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. Our program provides comprehensive, family-centered diagnostic and care services for children with concerns for ASD. Our team can refer children to occupational therapy, physical therapy, speech and language therapy, as well as augmentative and alternative communication (AAC). Families are also provided with intensive care coordination and support in accessing resources.

Down syndrome regression disorder (DSRD)

Individuals with Down syndrome, particularly adolescents, may go through a rare condition called Down syndrome regression disorder. This can result in an abrupt 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.

At Boston Children’s Hospital, we have a multidisciplinary team of specialists that includes neurologists and neuroimmunologists, psychiatrists, developmental behavioral pediatricians, and psychologists, who work closely together to understand what’s happening and create a plan to help each child. Our team collaborates to provide state-of-the-art diagnostic techniques and individualized treatment for patients and support for their families. The Down Syndrome Program can assist with appointments, services, and any questions you may have.

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 locations.