interviews in those states is described in this appendix, along with other methods used in the study, including the literature review, committee meetings, and a public workshop.
The data used in this study had important limitations. Comprehensive, standardized analytic information on the Federal TBI Program is not available. The National Association of State Head Injury Administrators (NASHIA) Guide to State Government Brain Injury Policies, Funding and Services is the only source of comprehensive information on the characteristics and activities of state TBI programs (NASHIA, 2005). The guide, although informative, draws primarily from self-reported data from state TBI programs. The data are neither standardized nor audited. States do not use a standard diagnostic definition of TBI nor is there a standard terminology for describing TBI services. One state, for example, may define “personal care” as a single service, while another state uses the same term to describe a range of assisted living or residential supports. Eligibility for state TBI services also varies; for example, some programs target adults only, while other programs also serve children.
As described below, the study used information gathered in interviews with TBI stakeholders in seven states and representatives of selected national organizations. The state-based interview informants were not disinterested participants; they were either state officials of the respective state TBI programs or other individuals identified by the state agencies. These individuals could be motivated by an interest in perpetuating federal funding.
Staff searched the primary scientific literature via Medline and collected TBI program data and relevant materials from HRSA, other federal agencies, and state TBI programs; the TBI Technical Assistance Center (TBI TAC), NASHIA, Brain Injury Associations, federally mandated protection and advocacy (P&A) systems in the states, and others.
The committee met eight times by telephone conference and held two in-person meetings to formulate its approach to the study, review the data collected, and develop the report. The first in-person meeting included a 1-day public workshop to gain the perspectives and assessments of experts and key stakeholders. Box A-1 presents the workshop agenda, which in-