“Moving the Needle” on Systems of Services for CYSHCN

By Bonnie Strickland, PhD
Director, Division of Services for Children with Special Health Needs, MCHB

The Block Grant Review is behind us for another year and, as always, I am struck by the widespread reach and leverage of the state/federal partnership. Over the years, I also have been struck by the observation that the Block Grant Review process provides an excellent opportunity to illustrate how Title V, including CYSHCN programs, addresses the broad CYSHCN population defined in 1998 as, "those who have, or are at increased risk for, a chronic physical, developmental, behavioral, or emotional condition, and who also require health and related services of a type or amount beyond that required by children generally."

The definition of CYSHCN is purposefully broad because it is intended to provide an inclusive, public health perspective on CYSHCN, rather than a treatment-oriented, condition-specific perspective. In fact, most CYSHCN may not receive direct services from the state Title V CYSHCN program at all. A significant proportion of CYSHCN are more likely to be benefiting from the broader MCH program and other service sectors than receiving direct/enabling services from the Title V CYSHCN program. Through the multiple programs and core public health functions of Title V, it is likely that MCH, in some way, touches most, if not all, children and youth included in the definition. With the provisions and imminent implementation of the ACA, the need to clearly articulate the role of Title V in the context of this legislation, and the emergence of the life course perspective as a driver in MCH programs, now seems like a good time to consider, and articulate, exactly how MCH programs work together purposefully, and with partners, to "move the needle" on facilitating the comprehensive system of services for CYSHCN required by the Omnibus Budget Reconciliation Act of 1989 (OBRA 89).

During the past decade, we have conducted the National Survey of Children with Special Health Care Needs (NS-CSHCN) three times. The survey was the first, and remains the only, survey of its kind designed to utilize the common definition of CYSHCN (minus the "at-risk" component) to provide national and state prevalence estimates, as well as a barometer on how CYSHCN and their families fare in the health care system. The survey has informed thousands of studies, Healthy People 2010 and 2020 Objectives, and the national performance measures for the Title V Annual Report. Yet, progress toward the "comprehensive system of services" envisioned by OBRA 89 remains slow. The 2009-10 NS-CSHCN indicates that, while many CYSCHN have access to components of a well-functioning system, only a small percentage have access to all six components including: family/professional partnership; access to care through the medical home; adequate financing for needed services; early and continuous screening; organization of services for easy use; and services necessary to transition to adult health care.

"Moving the needle" is certainly not easy. The bar is set intentionally high, and the inclusive definition of CYSHCN, by design, cannot be addressed by a single program. But it can be accomplished with the concerted and coordinated effort across all Title V programs, and deliberate, focused collaboration with partners, including education, child care, health plans, Medicaid, professional organizations, and CYSHCN and families, to name a few. While extensive partnerships are a hallmark of Title V programs, it is not always apparent how these partnerships work together to specifically create the seamless system of services and supports required by the broad population of CYSHCN, as well as those served through the state CYSHCN program. For 2013, I would like to challenge each Title V MCH and CYSHCN program to take another look at the broad definition of CYSHCN and consider the extent to which a clearly articulated system is in place for the broad population of CYSHCN and their families; the extent to which the five-year needs assessment process facilitates assessing the gaps for the broad population; and the extent to which the Block Grant application reflects the extent to which Title V programs work together and across programs to ensure an inclusive approach to addressing the needs of the broad population of CYSHCN.

Despite tough economic times, we have seldom had a better opportunity to "move the needle" on access to a well-functioning system of services for CYSHCN and their families. The ACA includes unprecedented opportunities to improve coverage and quality of care; new home visiting programs in almost every state extend the capacity of Title V and partners to directly impact at-risk and vulnerable children and families; significant grant programs provide opportunities to demonstrate and spread models that work; and the science of quality improvement has evolved to a point that we can carefully monitor the impact of our programs. As we move toward realizing the vision established by OBRA 89 of an inclusive and comprehensive system of services for CYSHCN and their families, we have a great opportunity to demonstrate the broad reach of Title V, and the rich legacy of partnership, infrastructure building, and resource leveraging, to advance the system of services for ALL CYSHCN and their families.