Professor Robert L. Schalock, Ph.D. Institute of Health & Welfare Policy Yang Ming University

1. Family Quality of Life and Application AmongPeople with Intellectual Disabilities and Their Families Professor Robert L. Schalock, Ph.D. Institute of Health & Welfare Policy Yang Ming University October 17, 2008

2. Rationale for Family Quality of Life Focus • International focus on QOL for persons with intellectual disabilities (ID) • Increased responsibility expected of family members in supporting and caring for their relations with ID; in Taiwan, approximately 90% live with families) • Need for family support • More holistic approach to understanding the impact of disability on the family and family members • Historically, stress burden of care, effect on family functioning, and/or eco-cultural deprivation/changed routine • Applying a QOL framework to families brings together a wider range of aspects of family life to understand family experiences and needed supports

3. Steps in the Development of a QOL Conceptual and Measurement Framework • Observing and describing the phenomenon (focus groups) • Performing concept mapping (indicators to domains) • Validating the concept and measurement framework (factor analysis) • Cross-cultural studies to determine etic (universal) and etic (culture-bound) properties • Structural equation modeling to determine higher order construct

4. Individual-Referenced Quality of Life Conceptual and Measurement Framework

5. Family Quality of Life Definition • “Family quality of life is a dynamic sense of well-being of the family, collectively and subjectively defined and informed by its members, in which individual and family-level needs interact.” (Zuna et al., in press)

6. Family Quality of Life Domains • Aznar and Castanon (2005) • Emotional Well-Being Family Life • Personal Strength & Development Cohabitation Rules • Interpersonal & Community Relations Physical/Material Well-Being • Beach Center (Summers et al., 2005) • Family Interaction Physical & Material Well-Being • Parenting Emotional Well-Being • Disability-Related Supports • International Family QOL Project (Isaacs et al., 2007) • Health & the Family Financial Well-Being • Family Relationships Supports from Others • Supports from Disability-Related Services Influence of Values • Careers & Preparing for Careers Leisure & Recreation • Community Interaction

7. Family QOL Domains and Exemplary Indicators (Source: Summers et al., 2005, p. 780)

8. Implications for Practice • Policy Level • Identify impacts of current policies or policy changes on family QOL • Comparison before and after policy changes are implemented • Use domains and indicators to craft new policies designed specifically to address respective domain • Agency and Community Level • Basis for decision making (e.g. targeted supports; additional supports) • Basis for staff training • Basis for meeting accountability/reporting requirements • Individual Level • Identify priority areas • Assist in communication • Self evaluation (e.g. assess own opportunities, initiatives, attainment, and satisfaction with their overall family quality of life)

9. References • Aznar, A. S. & Castanon, D. G. (2005). Quality of life from the point of view of Latin American families: A participative research study. Journal of Intellectual Disability Research, 49 (10), 784-788. • Chou, Y.C. & Schalock, R. L. (2007). Trends in residential policies and services for people with intellectual disabilities in Taiwan. Journal of Intellectual Disability Research, 51 (2), 135-141. • Chou, Y.C., Schalock, R. L., Tzou, P. Y., Lin, L.C., Chang, A. L., Lee, W.P., & Chang, S. C. (2007). Quality of life of adults with intellectual disabilities who live with families in Taiwan. Journal of Intellectual Disability, 51 (11), 875-883. • Isaacs, B. J., Brown, I., Brown, R., Baum, N. et al. (2007). The International Family Quality of Life Project: Goals and description of a survey tool. Journal of Policy and Practice in Intellectual Disabilities, 4 (3), 177-185. • Schalock, R. L., Gardner, J.F., & Bradley, V. J. (2007). Quality of life for people with intellectual and other developmental disabilities: Applications across individuals, organizations, communities, and systems. Washington, DC: American Association on Intellectual and Developmental Disabilities. • Summers, J.A., Poston, D.J., Turnbull, A. P. et al. (2005). Conceptualizing and measuring family quality of life. Journal of Intellectual Disability Research, 49 (10), 777-783). • Zuna, N., Summers, J. A., Turnbull, A. P., Hu, X. et al. (in press). Theorizing about family quality of life. In R. Kober (Ed.), Quality of life for people with Intellectual disability. New York: Springer.