By Paige Bussanich
Senior Program Manager, CYSHCN; AMCHP
In April, AMCHP released the National Title V Children and Youth with Special Health Care Needs Program Profile, following a survey conducted in 2015-16 to gain insight into Title V children and youth with special health care needs (CYSHCN) programs. Respondents included representatives from 48 state and territorial CYSHCN programs, who were asked to rate their programs' leadership in a range of areas.
Structure of Title V CYSHCN Programs
It is important to understand the differences in where CYSHCN programs are located within state government. A majority of responding states and territories (28) indicated that their CYSHCN program is located within the Title V MCH program. In another eight programs, CYSHCN is in a separate division but in the same agency that houses the Title V MCH program. Seven states house the CYSHCN program in a separate agency from the MCH program, and five states noted another location for their CYSHCN program. The profile found that in most cases, CYSHCN is in the same agency as MCH, but in a different division – such as in California, where the state Medicaid agency houses CYSHCN.
CYSHCN Program Strengths
Respondents were asked to rate their programs' leadership in a range of areas, including programmatic roles, financing, advocacy, partnership development, and capacity development, on a scale of one (highly disagree that the CYSHCN agency is a leader) to five (highly agree). The mean rating across responding states was calculated; a mean higher than 3.0 indicates general agreement that the state is a leader, and a higher mean indicates stronger agreement.
States reported high confidence in their leadership in the area of developing CYSHCN workforce capacity within the state Title V agency, with a mean score of 3.72. The table below shows the ratings on program strengths.
Many state CYSHCN directors are relatively new to their positions. Six states reported that their CYSHCN directors have been in their jobs for less than one year, and 14 have been there for one to three years. An additional 13 directors have been in place for four to seven years, while a total of 15 have been in their positions for eight or more years.
As for state Title V directors, respondents reported that 29 directors have been in their positions for three years or less, while eight have been there for four to seven years, and 10 have been in their jobs for eight years or more.
While the CYSHCN profile report provides only a snapshot of CYSHCN programs and not trends over time, the results allow state and territory directors to foster cross-state connections to increase the spread of promising practices and strategies to continue to develop the capacity of CYSHCN programs. As the survey results demonstrate, the need for state Title V CYSHCN directors to network and consult with fellow state directors and reach out to CYSHCN experts has never been greater, because of the increasing number of new directors as well as the restructuring of programs.