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

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

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

Individual-Referenced Quality of Life Conceptual and Measurement Framework Factor Domain and Exemplary Indicators Independence Personal Development: personal skills, adaptive behaviors Self-Determination: choices, decisions, autonomy Social Participation Interpersonal Relations: Friendships, social networks Social Inclusion: Community involvement, roles Rights: Access, dignity, respect Well-Being Emotional: safety and security, positive experiences, success Physical: Health and nutrition status, recreation Material: Income, possessions

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)

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

Family QOL Domains and Exemplary Indicators Domain Exemplary Indicators Disability-Related Supports Spending time together, talk openly to one another, solves problems together, supports one another Parenting Help the children to be independent, help with school work, help the children to get along together and with others Emotional Well-Being Has the support needed to relieve stress, have friends who provide supports, have time to pursue their own interests Physical/Material W-B Gets medical care when needed, have needed transportation, has a way to take care of expenses, feels safe in community Family Interactions Has support to make progress, school and/or work, and at home, has support to make friends, has a good relationship with service provider (Source: Summers et al., 2005, p. 780)

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)

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 American families: A participative research study. Journal of Intellectual Disability Research, 49 (10), Disability Research, 49 (10),  Chou, Y.C. & Schalock, R. L. (2007). Trends in residential policies and services for people with intellectual disabilities in Taiwan. Journal of Intellectual Disability people with intellectual disabilities in Taiwan. Journal of Intellectual Disability Research, 51 (2), Research, 51 (2),  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 S. C. (2007). Quality of life of adults with intellectual disabilities who live with families in Taiwan. Journal of Intellectual Disability, 51 (11), families in Taiwan. Journal of Intellectual Disability, 51 (11),  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 Quality of Life Project: Goals and description of a survey tool. Journal of Policy and Practice in Intellectual Disabilities, 4 (3), and Practice in Intellectual Disabilities, 4 (3),  Schalock, R. L., Gardner, J.F., & Bradley, V. J. (2007). Quality of life for people with intellectual and other developmental disabilities: Applications across individuals, intellectual and other developmental disabilities: Applications across individuals, organizations, communities, and systems. Washington, DC: American organizations, communities, and systems. Washington, DC: American Association on Intellectual and Developmental Disabilities. 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 measuring family quality of life. Journal of Intellectual Disability Research, 49 (10), ). (10), ).  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 family quality of life. In R. Kober (Ed.), Quality of life for people with Intellectual disability. New York: Springer. Intellectual disability. New York: Springer.