EXAMINING QUALITY OF LIFE FROM THREE PERSPECTIVES: A Study of Deinstitutionalization of Persons with Disabilities

1. EXAMINING QUALITY OF LIFE FROM THREE PERSPECTIVES: A Study of Deinstitutionalization of Persons with Disabilities Dawn Hall Apgar, PhD Paul Lerman, DSW Tameeka Jordan, MA Developmental Disabilities Planning Institute Center for Architecture and Building Science Research New Jersey Institute of Technology 323 Martin Luther King Boulevard Newark, New Jersey 07102 (973) 642-7616 (973) 596-8443 (fax) http://www.ddpi.njit.edu dawn.apgar@.njit.edu

2. Presentation • Background • Evaluation of Institutional Closure • Overview of Research Design • Respondent Groups • Quality of Life Domains • Findings • Reliability of Proxy Responses • Impact of Deinstitutionalization on QoL • Implications and Limitations

3. Background • Part of a deinstitutionalization effort in New Jersey • 523 consumers living at North Princeton Developmental Center (489 persons in original sampling frame) • Closure announced in 1995 and consumers moved between January 1997 and June 2000 • Data was collected between 1994 and 2000

4. Respondent Groups • Examined impact of deinstitutionalization on consumer abilities, challenging behaviors, living environments, and quality of life • Interviewed 3 respondent groups using comparable measures • Staff (face to face) • Family members/guardians (phone) • Consumers (face to face) • Reliability Testing

5. Quality of Life Domains

6. Measuring Quality of Life # of Items Domains Staff Consumers Families Safety 3 3 3 Emotional Well-Being 4 4 4 Autonomy 10 9 5 Community Participation 7 5 3 Productivity 3 Not Asked 0

7. Agreement on Quality of Life Ratings • Significant correlations between staff, family member/guardian, and consumer QoL ratings were found at 3, 15, and 27 months for autonomy and community participation. • Staff and family member/guardian reports for emotional well-being and safety were not related at 3, 15, and 27 months. • Staff and consumer reports for emotional well-being were related for 3 and 15 months – not 27 months. • Staff and consumer reports for safety were related for 27 months – not 3 and 15 months.

8. Agreement on Quality of Life Ratings • Staff, family members/guardians, and consumers have moderate to strong agreement in the areas of autonomy and community participation. • Staff reports appear to be more reliable proxies for consumers than for family members/ guardians with regard to emotional well-being and safety.

9. Quality of Life Associated with Community Living • Community Participation (all 3 groups) • Self-Care/Independence (staff) • Family Phone Contacts (all 3 groups) • Freedom - Low Social Controls (staff) • Psychiatric Visits (staff) • Productivity (staff) Supportedby Strong Empirical Evidence

10. Quality of Life Associated with Community Living • Autonomy (all 3 groups) • Family Visits (all 3 groups) • Personal Safety (all 3 groups) • Possession Safety (staff) Supported by Moderately Strong Empirical Evidence

11. Quality of Life Associated with Community Living • Physical Health (staff) • Emotional Well-Being (all 3 groups) Supported by Weak Empirical Evidence

12. Quality of Life Not Associated with Community Living • Friendships (staff) • Reduction in Inappropriate Behaviors (staff) • Material Well-Being (staff)

13. Implications • Staff, Family Members/Guardians, and Consumers View QoL as a Multi-Dimensional Construct Which Can Be Assessed Using the Same Measures. • Research Supports Using Staff as Proxies for Consumers and Family Members/Guardians When Assessing Quality of Life in Domains of Autonomy and Community Participation.

14. Limitations • Generalizability • Findings were based on proxy comparisons for consumers who were verbal and identified as reliable respondents. • More Work to Be Done • Study did not test reliability of proxy reports in all QoL domains (i.e., friendships, health, productivity, etc.)