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CISWH’s Meg Comeau Co-authors Research Recommendations to Improve Health Care Financing for Children and Youth with Special Health Needs

Friday, May 20, 2022

By definition, children and youth with special health care needs (CYSHCN) require more health care services than children typically do to ensure their optimal health, quality of life and well-being.  About 20% of children in the US have special health care needs, and their care comprises about half of all pediatric health care spending. 

Health care spending in the US has historically been based on payment for acute, time-limited health care needs, and payment has not typically been attached to improved outcomes.  However, CYSHCN require a different approach, since their health care needs are ongoing and effective spending on improved health care in childhood pays dividends throughout the life course.

With health care costs spiraling for all populations, increasing attention is being paid to improving the cost-effectiveness of spending through payment reform. To date, the development and testing of payment reform has primarily focused on adults rather than children, who have different health and social needs.  This leaves gaps in knowledge around what kinds of benefits best serve CYSHCN, which payment models are the most cost-effective and how to identify and test new quality measures that ensure what’s being paid for matters to children, families, providers, and payers.

In a new paper from Academic Pediatrics co-authored by Meg Comeau, CISWH senior project director and principal investigator for the Catalyst Center, a team of experts recommend a financing research agenda focused on filling the knowledge gaps around benefits, payment models and quality measures in the care of CYSHCN.

The State of Research on Healthcare Financing for CYSHCN

To inform their research recommendations, the authors highlight three existing observations on current health care financing for CYSHCN, including:

  • Underinsurance is a common problem for privately-insured families raising CYSHCN, and results in financial hardship for many.
  • Almost half of all CYSHCN are enrolled in Medicaid coverage, along with most children with medically complex conditions.  Medicaid managed care may include capitation (a set amount of money per enrollee) and an emphasis on care coordination as a way of increasing value.
  • Most of the existing research on increasing value in health care financing for CYSHCN focuses on models tested in specific environments (hospital-based outpatient clinics, for example) with limited numbers of participants, making it difficult to generalize findings to different settings and larger populations.

Recommendations for Future Research

Based on the current landscape of healthcare financing for CYSHCN, the authors identified three topic areas for research that addresses the specific needs of CYSHCN, their families, and their healthcare providers:

  1. Assess value by evaluating the fit between benefit packages and the needs of CYSHCN through comparison of different payment models with typical patterns of need.
  2. Develop models to measure return-on-investment for care coordination activities.
  3. Use a multistakeholder process to identify and rank health care value outcomes for CYSHCN, as a precursor to developing and testing new quality measures.  Included in this process should be families raising CYSHCN, pediatric health care providers, and both public and private payers.

Using this agenda, researchers can begin to build a robust body of evidence that can lead to innovative financing that addresses the unique needs of CYSHCN and moves the focus from spending on health care to investment in children’s overall health and well-being.


Read the full article here.