Sickle Cell Disease Adolescent Transition Services

The New York State Department of Health seeks to improve health outcomes for adolescents and young adults, ages 12-21, with sickle cell disease, as they transition from pediatric to adult health care and strive to achieve self-care.

The New York State Department of Health, Bureau of Child Health, administers the Sickle Cell Disease Adolescent Transition Services Program (Program) through five (5) Hemoglobinopathy Specialty Care Centers (Centers) across New York State, including New York City. The Program strives to improve the quality of life and health outcomes for adolescents and young adults, age 12 to 21, with sickle cell disease, ultimately resulting in transition to self-care management and adult medical care providers. The Program provides comprehensive care coordination and navigation services. Further, the Centers work with local health department Children and Youth with Special Health Care Needs programs as well as Health Homes for Medicaid-eligible adolescents and young adults to provide ongoing engagement with the healthcare system. The Centers include the following organizations:

Centers develop and implement a transition and care management model that uses a health equity lens to promote a successful transition of adolescents and young adults with sickle cell disease to adult health care providers and self-care. Transition Navigators assist adolescents and young adults to schedule and keep medical appointments using reminders, text messaging or home visits; provide support and linkages for the range of health and social supports and services needed ; and provide and reinforce culturally competent educational messages to improve understanding of self-management and preventive health care including non-medical mechanisms for pain management. Centers involve adolescents, young adults, and families in the development of processes, policies and procedures as well as providing ongoing input and involvement in quality improvement initiatives. Centers also develop a system in which adolescents and young adults with sickle cell disease and their families provide peer information and support to other families experiencing sickle cell disease.

To achieve our goal, the Program staff collaborate with other New York State programs to address the needs of persons with sickle cell disease. Programs include the Newborn Screening Program, Medicaid, Health Home Programs, Children and Youth with Special Health Care Needs Program, and the Children and Youth with Special Health Care Needs Center of Excellence. Staff also collaborate with community-based organizations located statewide.

Resources:

CDC Links

Health Homes

Hemoglobinopathy Specialty Care Centers

Medicaid

Transition Services

Wadsworth Center Newborn Screening Program

What You Should Know About: Living with Sickle Cell Disease

To contact the Children and Youth with Special Health Care Needs (CYSHCN) Program