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 (973) (973) (fax)

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

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

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

Quality of Life Domains

Measuring Quality of Life # of Items # of Items DomainsStaff Consumers Families Safety Emotional Well-Being Autonomy Community Participation Productivity 3 Not Asked 0

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. 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 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 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. Staff and consumer reports for safety were related for 27 months – not 3 and 15 months.

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, 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. Staff reports appear to be more reliable proxies for consumers than for family members/ guardians with regard to emotional well-being and safety.

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

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

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

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

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

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