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Chapter 2: Research Methodology

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In the development of a comprehensive overview of the current state of knowledge, attitudes, and practices toward parents with disabilities and their children, NCD undertook a variety of activities to collect and evaluate information for the report.

An extensive desk-based document review was undertaken to examine scholarly literature, journal articles, studies, commentaries, conference proceedings, popular newspapers and magazines, Web sites and blogs, and other materials related to parents with disabilities and their families. NCD consulted primary sources—including electronic databases, federal agency resources, and a variety of academic journals—and spoke with key informants who identified specific reports and related documents.

Semistructured key informant telephone or in-person interviews were conducted with 22 subject matter experts concerned with parents with disabilities and their children. Informants included social science researchers, advocates, and service providers. All the persons identified and interviewed had expertise in this field.

In addition to the key informant interviews, informal interviews were conducted with 13 people with disabilities, 12 who are parents and 1 who is trying to create a family through assisted reproductive technologies. These interviews were completed via telephone, email, or instant messaging, depending on the needs and preferences of the interviewees. Pseudonyms are used throughout the report to ensure anonymity. Vignettes were provided by TLG. Collectively, these stories exemplify the experiences of parents with diverse disabilities and their children.

NCD summarized the applicability, effectiveness, and impact of the Americans with Disabilities Act and the Rehabilitation Act on parents with disabilities and their children, and conducted a review of key cases under each law and their impact.

NCD reviewed the federal and state legislation concerning child welfare, family law, and adoption to determine the extent to which people with disabilities are included, to identify problems and gaps as they relate parents and prospective parents with disabilities, and to identify opportunities for increasing their participation.

NCD identified key federal agencies, departments, centers, and offices whose missions relate to parents with disabilities and their children. NCD then determined the extent to which issues related to these populations—including accessibility, enforcement of disability laws, and supports for parents with disabilities—had been identified and addressed.

Finally, NCD identified examples of effective models that serve and support parents with disabilities and their children. Programs are included that meet three general criteria: (1) they respond to specific needs that have been defined either by parents with disabilities or by others who are very familiar with the needs of parents with disabilities; (2) they are well established in terms of factors including longevity, funding, and institutional commitment; and (3) they have conducted customer satisfaction or other evaluations that were available for review to determine their effectiveness and to make improvements.