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Designing Systems of Care that Work for Children with Special Health Care Needs

National Context, New Initiative

Children with Special Health Care Needs (CSHCN) are defined as children who have or are at risk for chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that generally required by children (McPherson et al., 1998).

While always important, the emphasis on improving the delivery and quality of care for these children has become more urgent since the President's New Freedom Initiative, a national agenda for removing barriers to community living for people with disabilities, was released in 2001.

The New Freedom Initiative highlighted six performance outcomes to assess systems of care for CSHCN:

  1. Family Participation and Satisfaction.
  2. Access to Medical Home.
  3. Access to Affordable Insurance.
  4. Early and Continuous Screening.
  5. Easy-to-Access Community-based Service Systems.
  6. Services Necessary to Transition to Adulthood.

Progress toward these objectives may be monitored on both the national and State levels. State agencies may assess their progress in two ways:

  1. National survey data.
  2. State-level administrative data.

The National Survey on CSHCN, conducted in 2001 and co-sponsored by the National Center for Health Statistics and the Maternal and Child Health Bureau, may serve as a tool to help assess national and State-based estimates on the prevalence of CSHCN and the impact of their conditions on children and their families. New work is now being done to develop indicators based on survey findings with which to monitor the performance of systems of care for CSHCN.

Another method uses administrative data available from State agencies. South Carolina has developed one model of this approach, using a database and indicators to evaluate the system of care for CSHCN in their State using multiple agency databases. This system not only allows the State to track the six national performance measures but also provides information in other critical areas.


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