Supporting Youth with Special Healthcare Needs

Why this needs our attention

About 1 in 6 children and adolescents living in the United States have special healthcare needs, and the number is increasing. A special healthcare need may result from premature birth, illness, injury or congenital conditions. Many of those children require life sustaining technology, extensive treatments and medications throughout their lives.

Lurie Children's is providing leadership to launch and support the life trajectories of youth with special healthcare needs to help them reach their fullest potential and become integrated members of society.

What Lurie Children's is doing to address it

Chronic Illness Transition Team
This initiative includes broad medical collaboration among primary and sub-specialty care providers within the medical center to prepare adolescents with medical complexities (and their families) to transition from pediatrics to adult care. It focuses on the gradual transfer of care management from the parent to the adolescent as part of this process.

Supporting Adolescents with Independent Life Skills (SAILS) Program
Our SAILS program addresses life skills development to support independence among youth with medical complexities. Areas addressed include self-advocacy, healthcare skills such as making physician appointments and filling medication prescriptions, adult health insurance, educational and vocational planning, employment and socialization. A separate track for parents provides complementary instruction and skills development on how to support their adolescents' transitioning process. 

Consortium of Home Healthcare Agencies
The consortium has organized home healthcare agencies from throughout the state of Illinois to facilitate timelier discharge of medically complex children from hospital to home care in collaboration with La Rabida Hospital, the state Title V Program, Illinois Home Health Care Council and other advocacy groups.

School Nurse Education
We provide school nurse education and training on integration of management of technology-dependent children in Chicago Public Schools (system-wide) and suburban schools.

School-Based Management of ADHD
We provide school-based education on management of children with attention deficit hyperactivity disorder (ADHD). Learn about the hospital's Child and Adolescent Psychiatry program.

"Oral Classroom" Instruction
We work with Chicago Public Schools to strengthen "oral classroom" instruction for children with cochlear implants and support for the Lurie Children's Auditory-Verbal Summer Programs. Learn more about the Lurie Children’s cochlear implant program.

Epilepsy Management in School
Our Epilepsy Center provides free educational services to all families within the division. The
educational services consist of working with the education liaison for support with navigating school questions and/or concerns. Learn more about the Epilepsy Center’s services.

Fitness Program
We provide hospital-based fitness program for children with spina bifidacerebral palsy and other musculoskeletal disorders.

State & National Initiatives
We support leadership in state and national initiatives and research collaborations to develop best practices, care guidelines and financing recommendations to support youth with medical complexities from childhood to adulthood.

Legislative Policy
As Illinois' largest provider of pediatric Medicaid services and the only hospital that cares for children from every county and legislative district in Illinois, we pledge to remain good stewards of their trust in our care. Learn more about Lurie Children’s health policy and advocacy efforts.