Qualitative research methods, in many forms, have been used to deepen understandings in the field of severe disabilities for decades. Using methods such as individual case studies, grounded theory, phenomenology, content analysis, life history, and ethnography, qualitative research has served to explain bounded systems, generate theory, study the lived experiences of individuals, investigate historical and contemporary texts and contexts, share first-person narratives, and investigate cultural and social systems that involve students with severe disabilities. Indicators of quality in qualitative methods and means of establishing credibility have been explicated and are widely applied in the field. To varying degrees, qualitative methods have allowed researchers to represent the voices of students with severe disabilities and engage them actively in the research process, which is important given that a mantra among persons with severe disabilities and their advocates is nothing about us without us. Regardless of the methods, accurately representing the voices of students with severe disabilities and including them as active participants in research is not always easy to accomplish given the nature of their cognitive and communication profiles. Many students with severe disabilities do not communicate symbolically through speech, sign language, or graphic symbols. Others have limited means of communication and are dependent on familiar communication partners to co-construct meaning with them. Some approaches to qualitative research, such as post-critical ethnography, provide a potential path toward representing the voice of a broader range of students with severe disabilities because these methods lead researchers to interrogate assumptions in the field while examining their own positions, perceptions, and beliefs relative to the subject of the investigation. While these methods offer opportunity with respect to their ability to fairly represent and involve students with severe disabilities, they challenge previously accepted indicators of quality and means of establishing credibility in qualitative research. As qualitative research methods are applied in understanding students with severe disabilities in the future, these challenges will have to be addressed.
Karen A. Erickson and David A. Koppenhaver
Vera Munde and Peter Zentel
Designing education for learners with profound intellectual and multiple disabilities (PIMD) is a special challenge for both professionals and researchers. Learners with PIMD experience a combination of significant intellectual and other disabilities, such as motor and sensory impairments. Heterogeneity in terms of combination and severity of disabilities is a common characteristic of this group. In the past, learners in this target group were described as not being able to learn due to the complexity of their disabilities. Recent studies do provide evidence that learners with PIMD are in fact able to learn, however, evidence-based practice for designing education for this group of learners is still scarce. One reason could be the difficulties associated with conducting intervention studies such as randomized controlled trials or controlled clinical trials with this target group. Most studies are designed as single-case studies. Hence, only a small number of studies have investigated topics such as communication, assessment, and teaching curricula to generate knowledge about the education of these learners. The most important conclusion of these studies is that all teaching activities need to be designed according to the strengths and needs of each individual learner with PIMD.
Shridevi Rao, Nadya Pancsofar, and Sarah Monaco
A rich literature on family-professional collaboration with families and caregivers of children and youth with disabilities has developed in the United States. This literature identifies key barriers that impede family-professional relationships including deficit-based perceptions of families and children with disabilities, narrow definitions of “family” that limit the participation of some members such as fathers or grandparents, and historical biases that constrain the participation of culturally and linguistically diverse (CLD) families. Principles for building collaborative relationships with families include honoring the strengths of the family, presuming competence in the child and the family, valuing broad definitions of “family,” and understanding the ecology of family routines and rituals. Practices that help facilitate family-professional relationships are building reciprocal partnerships with various caregivers in the family including fathers as well as extended family members, adopting a posture of cultural reciprocity, using a variety of modes of communication with families, and involving families in all aspects of the special education process such as assessment, planning, prioritizing of skills, and identification of interventions. Pivotal moments in the family’s journey through their child’s schooling, including early intervention and transition to post-school environments, provide opportunities to build and strengthen family-professional relationships. Each of these moments has the potential to involve families in a variety of processes including assessment, planning, and articulating the goals and vision for their child/youth. A focus on strengths, collaborative partnerships, and family agency and voice is at the core of strong family-professional relationships.