Participation Values and Barriers as Experienced by Adults With Intellectual and Developmental Disabilities

This study addressed two research questions: (1) How do adults with intellectual and developmental disabilities (I/DD) define participation and (2) what factors do adults with I/DD, important others, and access specialists identify as barriers to participation within and across environments?

Twenty-five years after the passage of the Americans With Disabilities Act, people with I/DD continue to experience barriers to full participation in the community (Amado, Stancliffe, McCarron, & McCallion, 2013; Anderson et al., 2013). Community participation has become a priority in health care arenas and has been linked to outcomes such as quality of life and health (Brown, Hatton, & Emerson, 2013). How we define, measure, and support community participation affects the lives of people with I/DD; however, these efforts often exclude the voices of people with I/DD (Chang, Coster, & Helfrich, 2013). Participatory action research (PAR) and participant-driven data can help ensure that our efforts address the self-defined needs of this population (Patton, 2002).

This study used a qualitative, PAR design to explore participation as defined and experienced by people with I/DD. Participants were recruited through three community sites via purposeful, heterogeneity sampling.

Participants were included who met the eligibility criteria of being age 30 yr or older, having mild to moderate I/DD, and residing in the community.

Observations and interviews were conducted in home, work, and community settings. Participants engaged in person-driven goal setting to describe what they want to do that they are not currently doing and why they think they are not currently doing these activities. Field notes, interview transcripts, and worksite checklists were analyzed across 87 participants.

Qualitative data were analyzed using a constant comparative, grounded theory approach (Patton, 2002). Five participation values themes emerged—(1) participation access and opportunity, (2) engaging/doing, (3) choice and control, (4) social connection and helping others, and (5) meaningful engagement (an overarching meta-theme)—and five participation barriers themes emerged—(1) barriers to participation access and opportunity, (2) social and societal attitudes and treatment, (3) lack of choice and control, (4) barriers to dignity of risk, and (5) financial barriers.

Findings indicate that participants want to do more than they are doing and that meaningful participation is highly individualized. Findings also indicate that participants experience various social (physical, attitudinal, and systemic) barriers to participating in the way they wish. By understanding how adults with I/DD conceptualize and experience participation, occupational therapists can better support their meaningful participation in the community.

References

Amado, A. N., Stancliffe, R. J., McCarron, M., & McCallion, P. (2013). Social inclusion and community participation of individuals with intellectual/developmental disabilities. Intellectual and Developmental Disabilities, 51, 360–375. http://dx.doi.org/10.1352/1934-9556-51.5.360

Anderson, L. L., Humphries, K., McDermott, S., Marks, B., Sisirak, J., & Larson, S. (2013). The state of the science of health and wellness for adults with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 51, 385–398. http://dx.doi.org/10.1352/1934-9556-51.5.385

Brown, I., Hatton, C., & Emerson, E. (2013). Quality of life indicators for individuals with intellectual disabilities: Extending current practice. Intellectual and Developmental Disabilities, 51, 316–332. http://dx.doi.org/10.1352/1934-9556-51.5.316

Chang, F., Coster, W. J., & Helfrich, C. A. (2013). Community participation measures for people with disabilities: A systematic review of content from an International Classification of Functioning, Disability and Health perspective. Archives of Physical Medicine and Rehabilitation, 94, 771–781. http://dx.doi.org/10.1016/j.apmr.2012.10.031

Patton, M. Q. (2002). Qualitative research and evaluation methods (3rd ed.). Thousand Oaks, CA: Sage.