By Edward L. Schor, MD
All of us working with special needs children and their families know how important it is to have a high-quality, coordinated system of care designed to meet their needs. Until now, we have found it easy to identify what is lacking, but much more difficult to describe what a comprehensive health care system would look like. Now, an important new report describes in detail the capacities and capabilities necessary for such a system.
The report, Developing Structure and Process Standards for Systems of Care Serving Children and Youth with Special Health Care Needs, was developed by the Association of Maternal & Child Health Programs (AMCHP) with support from the Lucile Packard Foundation for Children’s Health.
This report represents the consensus of a national consortium of public and private organizations committed to assuring the provision of high-quality care for children and youth. The standards proposed represent the first national, collective effort to detail the components of a high-quality system.
The standards are based on:
- input from more than 30 key experts on child health and child health policy
- case studies of standards currently in use by selected states
- extensive review and commentary from a national work group
The work group members included leaders from the Health Resources and Services Administration, Centers for Medicare & Medicaid Services, other state and federal health agencies, health plans, child health care provider organizations, children’s hospitals, and insurance plans, as well as families and health services researchers.
We anticipate that these standards will help guide wise decisions by policymakers and payers to improve systems of care for children with special needs and their families. As states continue to transform how they pay for care for this population, evidence-based guidelines for optimal care and support for CSHCN will be essential to ensure that their care isn’t compromised.
Dr. Edward Schor, senior vice president at the Lucile Packard Foundation for Children’s Health, is a pediatrician who has held a number of positions in pediatric practice, academic pediatrics, health services research, and public health. He led Child Development and Preventive Care program at the Commonwealth Fund, and served as medical director for the Iowa Department of Public Health, Division of Family and Community Health.