Services and supports for young children with Down syndrome: parent and provider perspectives

Background As individuals with Down syndrome are living longer and more socially connected lives, early access to supports and services for their parents will ensure an optimal start and improved outcomes. The family's journey begins at the child's diagnosis, and cumulative experiences throughout infancy and childhood set the tone for a lifetime of decisions made by the family regarding services, supports and activities. Methods This study utilized focus groups and interviews with seven nurses, five therapists, 25 service co‐ordinators, and 10 English‐ and three Spanish‐speaking parents to better understand family experiences and perceptions on accessing Down syndrome‐related perinatal, infant and childhood services and supports. Results Parents and providers reflected on key early life issues for children with Down syndrome and their families in five areas: prenatal diagnosis; perinatal care; medical and developmental services; care co‐ordination and services; and social and community support. Conclusions Systems of care are not consistently prepared to provide appropriate family‐centred services to individuals with Down syndrome and their families. Individuals with disabilities require formal and informal supports from birth to achieve and maintain a high quality of life.