Who looks after Children with Special Health Care Needs when they turn 18?
The Office of Children with Special Health Care Needs (CSCHN), MCHB, HRSA, has an excellent agenda for CSHCN that includes health care transition (the move from pediatric- to adult-focused health care and parent- to self/shared-health management). This office only has authority for children and adolescents.
Offices that address chronic conditions typically focus on adult- and elderly-onset chronic conditions, e.g., Medicare, ASH Multiple Chronic Condition Initiative. Health conditions that originate in childhood and young adulthood are fundamentally different; affect growth and development; and impact parents and siblings.
A disconnect exists between disability and health leaders. As long as chronic conditions continue to be included under disability policy, these leaders need to work together to analyze the unique needs, overlap and gaps in disability and health policy for young adults transitioning and living with chronic conditions and disabilities.
Some of the options include:
• Expand the authority of MCHB to oversee young adults, particularly since HSS has adopted the life span approach.
• Create a separate office for Youth-Onset Chronic Conditions and Disabilities in the Office of Assistant Secretary for Health to address the separate and overlapping needs of chronic health conditions and disabilities; all the domains of transition (health, education, work, independent living, community participation); quality patient- and family-centered health care through the life span; data collection and health surveillance; health economics; comprehensive inter-agency collaboration, and private and public insurance and welfare programs.