Children and Youth with Special Healthcare Needs

Children and youth with special health care needs (CYSHCN) are those at “increased risk for chronic physical, developmental, behavioral, or emotional conditions that require health and related services of a type or amount beyond that required of children generally.”  More than 12 million U.S. children meet this definition. Comprising 15 percent to 18 percent of the childhood population, CYSHCN use 80 percent of the health care dollars spent annually for all children.

New Evidence Supports the Pediatric Medical Home

A team of child health researchers developed a brief regarding evidence about the pediatric medical home entitled "Medical Home for Children with Special Healthcare Needs -A Review of the Evidence." This report shows how medical home implementation leads to improvements in important outcomes for children and youth with special healthcare needs (CYSHCN) and their families. This work was carried out for the Maternal and Child Health Bureau and represents a collaboration among the MGH Center for Child and Adolescent Health Policy, NICHQ, and the Child and Adolescent Health Measurement Initiative.

Applying the Wisdom of Quality Improvement to Title V Activities

Over the past five years, NICHQ has worked with the federal Maternal and Child Health Bureau (MCHB) and state programs for Children with Special Health Care Needs (known as “Title V” programs, after the section of the Social Security Act through which they receive federal funds) to bring the science of quality improvement to state systems of care for children and families.

The two most recent state collaboratives looked at QI opportunities in services for children with hearing loss and epilepsy, with a focus on quality within Title V programs themselves.  They posed the questions:  

·         How does a Title V program go about systematically improving its effectiveness;
·         What are the domains in which such programs operate; and
·         What are the benchmarks by which we can measure progress across those domains.

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