We know from a decade or more of research that family members play significant roles in the education of children and youth (Henderson, & Mapp, 2002). We have also long known that family members of children, youth, and adults with disabilities have critical roles in the education and lives of their sons and daughters that is codified in many national education laws. Certainly there are such laws in the US, but families also have specific rights and roles in the UK, and a range of other countries (Bjarnason, 2004; 2010), though these certainly vary in implementation.
As parents of a son, now 42, with multiple disabilities, including intellectual disabilities, we came to these issues early (Ferguson & Ferguson, 1987; Ferguson, P., 2002) and engaged in research to understand professional perspectives about parents. This led, as we approached our own landmarks with our son, to further research with family members to understand what they had experienced in order to prepare ourselves.
The first study (Ferguson, Ferguson, & Jones, 1988) focused on how families of two different generations – those completing school prior to US federal legislation requiring schooling for disabled children and the generation that was facing school ending after that legislation. Using a framework of topical life histories to explore families’ experience of this event, we sought to provide a “thick understanding” (Ferguson, D., 2009) of families’ experiences with the transition event.
The second study (Ferguson, Ferguson, Jeanchild, Olson, & Lucyshyn, 1993) further explored the status of adulthood for young adults with disabilities. If it is the responsibility of professional and family members to launch individuals with significant disabilities into adult roles, we must understand the range with which success in adulthood is defined and the struggle to control whose definition becomes the operative one.
The third study built upon thee studies to present a theoretical framework for understanding the “promise of adulthood” for adults with significant intellectual and multiple disabilities which was first published in 1993 and has been republished 4 times (Ferguson & Ferguson, 1993; Ferguson & Ferguson, 2011). With each revision, we added more analysis and in the latest version we added additional data from long personal and professional experiences with one other family.
The final study enlarged our focus on professionals and families with disabled children to explore the relationships between schools and all families (Ferguson & Galindo, 2008). While family involvement in the education of their children is important, schools struggle to get a representative number of families to come to meetings and events or engage school-initiated activities. Research identifies a variety of things that explain this struggle including culture (e.g., Gutman & McLoyd, 2000; Lewis and Forman, 2002; Rao, 2000); socioeconomic levels, differences in social capital and family structure (e.g., Banks & McGee, 2001; , 1999; & Harris, 2000). Of course, many of these same dimensions also apply to families with a disabled child (e.g., Harry, Kalyanpur & Day; Turnbull & Summers, 1987).