Assessing the Attitudes Towards Community Placement of Family Members Whose Relatives with Developmental Disabilities Have Been Recently Deinstitutionalized

Dawn Hall Apgar
Director/Co-Principal Investigator
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)
hall@admin.njit.edu
 
Paul Lerman
Co-Principal Investigator
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
Purpose:
The resistance of family members can be a barrier to deinstitutionalization of their family members.  The philosophical debate between relatives and professionals as to whether care can best be provided in institutional versus community settings is a heated one.  The aim of this study was to determine whether these was a shift in attitudes towards community placement of family members whose relatives with developmental disabilities had been recently deinstitutionalized as a result of a developmental center closure.
 
Method: 
Data was collected from family members of a random sample of adults with developmental disabilities at three points in time – 3, 15, and 27 months after deinstitutionalization.  It was also obtained from and compared to a comparison group of persons who had relatives who were still institutionalized.  Data was collected via structured telephone interviews.
 
First, family members of persons who were deinstitutionalized were asked to recollect whether they wanted their loved ones to leave the DD Center at the time of its closing.  They were then asked whether they would want their relatives to return there if it were possible.
 
Secondly, all family members were questioned as to whether their relatives’ quality of life in 10 distinct areas could best be achieved in a developmental center setting, a community residence, or equally in both settings.  The responses of family members with relatives living in community residences were compared to those who have relatives residing in DD Centers.
 
Results:
Findings revealed that 59% of family members recalled being in favor of deinstitutionalization at the time of the facility closure, while 89% of this group reported now favoring community living 3 months after their relatives had been deinstitutionalized.  This shift was found to be statistically significant.
 
Additionally, in each quality of life area, family members with relatives in community residences viewed community living as significantly more favorable than their institutional counterparts.  These differences occurred 3 months after deinstitutionalization and persisted over time.

Implications for Practice:
These findings illustrate the importance of social context on attitudes.  Historically, the deinstitutionalization movement has attempted to change – with limited success – the attitudes of family members towards community placement BEFORE consumers move.  Such efforts have resulted in the expenditure of considerable financial and personnel resources.  The findings of this study suggest that the attitudes of family members may change – despite initial resistance – once their relatives have moved to the community.  Shifts towards viewing community living as advantageous may occur in all quality of life areas.
 
Additionally, as part of this study, an empirical measure to assess the attitudes towards community placement for persons with developmental disabilities was developed.  This measure may be useful to researchers interested in this topic, as well as practitioners as a means to assess familial readiness to accept such moves or acceptance once placements have occurred.