AUCD 2014 preconference workshop Lived experience of people aging with intellectual November 9 th 2014 and developmental disabilities (IDD): the use of inclusive research methods Lieke van Heumen, MS PhD candidate Disability Studies Paul D. Doolen Graduate Scholar for the Study of Aging Department of Disability and Human Development Lived experience of people aging with University of Illinois at Chicago intellectual and developmental disabilities Lieke van Heumen
AUCD 2014 preconference Aging of persons with IDD workshop November 9 th 2014 Aging with lifelong disability • recent phenomenon (Mosqueda, 2004) 641.000 people with • developmental disability over age 60 in US. Numbers to double by 2030 (Heller, 2013) Priority population (Bigby, 2000, 2004; • Bigby & Balandin, 2004; Janicki & Ansello, 2000) Little is know about disabled • people’s lives over time (Heller & van Heumen, 2013) Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen
AUCD 2014 preconference Integration of scholarship workshop November 9 th 2014 Scholars in gerontology and disability studies have yet • to fully engage with one another’s work (Chivers, 2011) Scholarship between both fields needs to integrate (Putnam, • 2007) Develop a dialectical and inclusive vision on aging (Kennedy • & Minkler, 1999) Recognize disability as identity variable in aging • discourse Incorporate aging theory and experiences of older people • in disability studies Disability studies scholars should show their ideas apply • to persons of all ages (Chivers, 2011; Kennedy, 2000) Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen
AUCD 2014 preconference workshop Including the voice of older people with IDD November 9 th 2014 Individual stories hold potential for: • changing attitudes and • improving membership in the • community Few studies focus on the • experiences of older people with IDD themselves Their ability to participate in research • has been questioned The challenge is one of METHOD • Adaptations need to be made to • effectively include this population in research Bridge gerontology and disability • studies to increase accessibility of Lived experience of people aging with methods intellectual and developmental disabilities Lieke van Heumen
AUCD 2014 preconference Principles of inclusive research workshop November 9 th 2014 Addresses issues of importance to people with IDD • Serves as a tool to improve lives of people with IDD • Accesses and represents experiences of people with IDD • Treats people with IDD with respect (Walmsley & Johnson, 2003) • Supports people with IDD to participate (Walmsley, 2004) • Creates ‘heterotopia’ (Meininger, 2013) • Learning process for all those involved • Grow together and co-create • Accessibility of research process and content (Kramer, 2014) • Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen
AUCD 2014 preconference Study on social relationships of older adults with workshop ID from a life course perspective November 9 th 2014 Social relationships important element in quality of life • (Antonucci et al., 2007). Social networks are shaped by the life lived (Knipscheer & • Antonucci, 1990). Older persons with ID tend to have less robust networks • (Bigby, 2000). Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen
AUCD 2014 preconference Gaps in research workshop November 9 th 2014 Body of knowledge incomplete and dated • Secondary informants exclusively used • Functional measures only limitedly considered • Glaring lack of a life course perspective • Ethical and methodological concerns in life story • research with older people with ID Lack of application of gerontological theory to disability • issues Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen
AUCD 2014 preconference Design workshop November 9 th 2014 Phenomenological approach • Qualitative research methods • 1) Pleasant 2) meaningful 3) • accessible Make your methods fit the person, not • the other way around Key support person • Combination of data collection • strategies In depth interviews with key • support person and social network maps (Tracy & Whittaker, 1990) In depth interviews with persons • with ID Lived experience of Creation of lifelines • people aging with intellectual and developmental disabilities Lieke van Heumen
AUCD 2014 Accessible preconference workshop materials November 9 th 2014 Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen
AUCD 2014 preconference workshop November 9 th 2014 Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen
AUCD 2014 preconference Participants workshop November 9 th 2014 Purposeful sampling through • agencies in Chicagoland area 12 persons with ID • Between 50 and 70 years of age • Mild to moderate disability • Different residential histories • 8 Caucasian, 4 African-American • 6 male, 6 female • 13 key support persons • Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen
AUCD 2014 preconference Lifelines workshop November 9 th 2014 Big unexpected impact of method • Effective and powerful tool to engage older adults with ID • in research process Icebreaker • Pleasant experience • Way to access own memories • Ownership • Pride • Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen
AUCD 2014 preconference Lessons learned workshop November 9 th 2014 Creativity • Flexibility • Time • Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen
AUCD 2014 preconference Discussion questions workshop November 9 th 2014 To what extent have you included the voice of older • people with IDD in research? What strategies have you used to make your research • more inclusive? What were some of the challenges you encountered? • What surprised you? • What would you do differently in future research? • Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen
AUCD 2014 preconference Contact information workshop November 9 th 2014 Lieke van Heumen, MS PhD Candidate, Disability Studies Department of Disability and Human Development University of Illinois at Chicago 1640 W. Roosevelt Rd, #538B, Chicago, IL, 60608 (312) 996-7988 lvheumen@uic.edu Lived experience of people aging with intellectual and developmental disabilities Lieke van Heumen
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