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Supporting Youth with Special Healthcare Needs

Why this needs our attention

Approximately 13-18% of all children (9-12.5 million) have special healthcare needs. A special healthcare need may result from premature birth, illness, injury or congenital conditions. Approximately 90% of children and youth with special healthcare needs now survive into adulthood with conditions that were once fatal as result of medical advances. Many children will require life sustaining technology, extensive treatments and medications throughout their lives.

Accordingly, Lurie Children's is providing leadership to launch and support life trajectories that will strengthen their capacity to reach their fullest potential and become integrated members of society. Areas of collaboration in support of children and youth with special healthcare needs include the areas detailed below.

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. Learn more about transitioning to adult care.

Supporting Adolescents with Independent Life Skills (SAILS) Program

The 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. Learn more about SAILS.

Consortium of Home Healthcare Agencies

This initiative 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.

Education & Training

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

School-Based Education

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

Chicago Public Schools Collaboration

We collaborate 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 hospital's cochlear implant program.

Epilepsy Management in School

Epilepsy program for teaching children with epilepsy and other seizure disorders in Chicago Public Schools (system wide) and suburban schools. Learn more about the Epilepsy Center's education program.

Fitness Program

We provide hospital-based fitness program for children with spina bifida, cerebral 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

Legislative policy on behalf of this special population of youth. Learn more about the hospital's policy.