Data Collection Methods & Limitations

Data Collection Methods

To identify the strategies discussed in the four sections of the website, we conducted telephone interviews with as many Title V and Medicaid programs as possible, usually interviewing the Directors of CSHCN programs at Title V agencies, and at Medicaid, senior staff or individuals identified as having the most knowledge of programs for CSHCN. We also collected written surveys from representatives of family leadership organizations in the states, usually Family Voices.

For some of the programs discussed in this section, we obtained more detailed information from state agency or program websites, the Centers for Medicare and Medicaid Services (CMS Web site) or publications or surveys produced by:

• The National Academy for State Health Policy (http://www.nashp.org)
• The Kaiser Family Foundation (http://www.kff.org)
• The Maternal and Child Health Policy Research Center (http://www.mchpolicy.org)

Limitations

Our website does not purport to represent an exhaustive review of all health care coverage and financing strategies that are available for CYSHCN across all states. As we collected data primarily from Medicaid, Title V and Family Leaders, we only discuss the programs that they identified and that we determined were innovative or otherwise relevant. Discussion of innovations developed in the private sector is more limited. We update this data every two years so some of the programs we describe might have been expanded, altered, or are no longer in existence.