BUSSW researchers awarded 5-year cooperative agreement to advance financing of care for children and youth with special health care needs

Tuesday, June 26, 2018

$500,000-per-year agreement will enable Center for Innovation in Social Work & Health to integrate health care financing expertise into collaborative network to improve state systems of care for children and youth with special health care needs (CYSHCN)


A national center dedicated to improving health insurance and financing of care for CYSHCN has a new five-year funding agreement to remain at the Center for Innovation in Social Work & Health (CISWH) at Boston University School of Social Work (BUSSW).

Since 2005 the Catalyst Center has focused on how health care coverage for children and youth with special health care needs (CYSHCN) is financed across the country and provided technical assistance and expertise to state agencies and other stakeholders. The Catalyst Center has an extensive record of researching, analyzing, and disseminating knowledge about health insurance and financing for CYSHCN and the impact of coverage on the health care needs and system of services for CYSHCN and their families.

The latest cooperative agreement is the fourth competitive round of funding awarded to the Catalyst Center project team by the Maternal and Child Health Bureau (MCHB) Division of Services for Children with Special Health Needs within the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA). The agreement is part of an initiative titled Advancing Systems of Services for Children and Youth with Special Health Care Needs. The initiative’s goal is to improve the health and well-being of CYSHCN and their families by establishing a network of centers that focus on three core health system components: access to the patient/family centered medical home, transition into adult health care systems, and the Catalyst Center’s focus: adoption of health care financing models that improve care and outcomes while achieving cost savings. The three centers within the network will collaborate to support state Title V programs, family leadership organizations, health care providers and other stakeholders.

From its inception, the Catalyst Center has focused on reducing uninsurance and inadequate insurance for children and youth with special health care needs. Although the Catalyst Center has seen an increase in the number of insured children over the past decade, with only 3.8 percent of CYSHCN uninsured in 2016 (the most recent year for which data is available), Meg Comeau, Catalyst Center co-principal investigator, explains that families of CYSHCN continue to experience financial hardship and difficulties paying for and receiving the services their children need. “Families raising children with special health care needs have higher out-of-pocket costs than families typically do—in 2016 almost 20 percent paid more than $1,000/year to meet their child’s health care needs,” she explained. “For some families, that’s a manageable amount; however, for many it’s a significant strain on an already strapped household budget. We have also learned much more about how the social determinants of health affect health care coverage and access to services for this population of children: Hispanic, non-white, older CYSHCN, those with greater functional limitations, those in rural areas, those who live in households below 199% of the FPL, or in households where the primary language is not English are all less likely to have adequate insurance to pay for the services they need. Also, CYSHCN receive services from a wide range of systems financed by disparate sources, each with its own funding stream. These systems are complex, siloed and poorly integrated. All of us—federal, state, and community stakeholders– need to work together to advance systems of services for CYSHCN, especially in the area of reducing disparities in health insurance coverage among underserved communities.”

As one of three national centers within the newly formed network, the Catalyst Center team will collaborate with a wide range of stakeholders to influence access to health insurance and advance the systems of services for CYSHCN. “We have engaged nationally recognized stakeholder representatives to partner with us through participation on our National Advisory Committee,” said Sara Bachman, Catalyst Center principal investigator. “Among the experts that represent the range of populations the Catalyst Center serves, our National Advisory Committee includes more than 25 percent of members who represent families of CYSHCN, CYSHCN/parent/family organizations, youth/young adults with special health care needs, and/or a member of the community. We view these interactions as bidirectional opportunities for learning; we exchange knowledge, skills, priorities and capacities. We also disseminate this knowledge to other states and stakeholders through our work.”

Bachman points out that closer integration of the Catalyst Center into a network with medical home and transition to adult care is timely, as increasing numbers of CYSHCN are living longer than ever before. “Advances in medical care mean children with chronic conditions are not only surviving but thriving into adulthood,” she explained. “These children and their families need access to a system of interdependent services, including adequate health care coverage and financing, that promotes healthy development across the life course and reduces health disparities.”

To learn more about the Catalyst Center’s work, please visit the website at

This project (U1TMC31757) is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $500,000, with no financing by nongovernmental sources. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS or the U.S. Government; Project Officer Sarah Beth McLellan.