Responding to the needs of children with chronic illness. The Title V approach

We have established an approach through Title V which involves 1) the Title V state system; 2) the tertiary level in universities, children's hospitals, and other major institutions; and 3) the community level, with local physicians, school staff, and community health, mental health, and social service providers for building a system of care for specific groups of chronically ill and disabled children using all available resources--public, private, and voluntary. The challenge in the 1990s as we move to the twenty-first century is to use that experience to support a generic system of care; each disease may have medically different consequences but all chronic illnesses share important characteristics for the child and family. The nation will be better served by programs that address children with special health needs as a class than by programs that are duplicated 200 times or more. The system developed cannot be a rigidly controlled or structured system. We live in a free pluralistic society where services to children are provided by public, private, and voluntary resources and by many different agencies and professionals. But it can be a more rational and better developed approach to long-term care based on the experience and knowledge we have gained in the past 50 years.