Quality of Life Differences between Adults with and without Disabilities

Adults with and without disabilities were surveyed to investigate similarities and differences be tween these groups on dimensions of quality of life. Differences were found in marital status and opportuni ties to make choices, as well as in the extent of social networks and activities experienced by these two groups. The authors contend that quality of life is a socially constructed phenomenon that must be addressed by increasing opportunities for self-determination in terms of both skill development and environmental supports. The effectiveness of services for individuals interactions with others. In Goode's model, with developmental disabilities have come to quality of life is achieved by meeting basic be measured by the degree to which quality needs and fulfilling responsibilities when it of life has been enhanced (Bellamy, Newton, reflects the cultural heritage of individuals LeBaron& Horner, 1990). Increasingly, qualand their environments (Goode, 1990). The ity of life indicators are viewed as a more acculitmus test for quality of life occurs when indi rate yardstick by which to evaluate services viduals, their families, professionals, service than merely questioning consumers on the providers, advocates, and others evaluate the degree of their satisfaction with services reoutcomes of services rather than their deliv ceived, which has been the standard for esery. As Stark & Goldsbury (1990) note, the tablishing social validity (Hawkins, 1991). individual and environmental aspects are The extent to which the lives of individuals somewhat complicated by the interaction be with developmental disabilities match those tween the quantitative aspect (what can be ob of their typical peers is a measure of their jectively measured) and the perceived dimen quality of life and hence a measure of the sosion (what is perceived to exist by individuals cial validity of the services. Interventions, and their families). then, are socially valid when their outcomes One tact pursued by Sands, Kozleski and positively affect quality of life (Storey & Goodwin (1991), Kozleski and Sands (1992) Horner, 1991). The rub in this model is our and Sands, Kozleski, and Goodwin (1992) has inexact understanding of the dimensions of been to analyze indicators of quality of life quality of life and the inter-relationships both for individuals with and without disabili among these dimensions. As we gain in our ties. Kozleski and Sands (1992) found that so understanding of the complexities of quality cio-economic status and other indicators of of life, the process of selecting strategies for quality life such as accessibility to others who intervention must include choosing among are willing to form and maintain relation interventions that can most directly and apships, personal development and fulfillment, propriately address individual quality of life and participation in social, community, and concerns. civic activities are only loosely coupled for in According to Goode (1990), quality of life dividuals without disabilities. Although such is the same for persons with and without dissocial demographics as socio-economic status, abilities. He further constructs quality of life race, ethnicity, gender, marital status, age, as a social phenomenon that is a product of and education have all been shown to impact independence, the ability to form and main tain relationships and the accessibility to Correspondence concerning this manuscript others who are willing to involve themselves should be addressed to Deanna J. Sands, School of in relationships appear more crucial (Boone Education, University of Colorado at Denver, P.O. & Stevens, 1991). Box 173364, Denver, CO 80217-3364. Since the technology exists to (a) enhance 90 / Education and Training in Mental Retardation and Developmental Disabilities-June 1994 income through supported employment Indian decent. Of the 217 total respondents, (Wehman, Kregel, & Shafer, 1989), (b) se41% were male and 59 were female, cure community living options (Pierce, LuckThe individuals without disabilities were asson, & Smith, 1990), and (c) strengthen soselected using three procedures: (a) random cial networks (Kennedy, Horner & Newton, selection on a shopping street in downtown 1990), we have the capacity to choose among Denver, CO; (b) stratified random sampling socially valid outcomes. Individuals with disof community organization members through abilities, their families, and service providers out the Denver metropolitan area; and, (c) are left to ponder how and where resources random selection of students at either an ur should be concentrated. This necessitates ban campus in Denver, Colorado or a small asking, as Landesman (1986) suggests, what town campus in Greeley, CO. The group of sets of environmental variables are most individuals without disabilities were heavily likely to enhance the quality of life for differrepresented by females (67%) as opposed to ent types of individuals at different times of males (32%). In all instances individuals com their lives. pleted the survey voluntarily, receiving no There is some evidence that suggests faccompensation for their participation, tors which must be present to ensure basic The 86 persons with disabilities were a sub levels of satisfaction (inhibitors) can and sample of persons who had been interviewed should be differentiated from those factors for a consumer satisfaction study mandated (contributors) that can enhance quality of life by P.L. 110 (Sands, Kozleski, & Goodwin, (Kozleski & Sands, 1992). Interventions can 1991). Of the 240 persons interviewed in the be directed to inhibitors, if minimum levels original sample, there were 117 adults. Only have not been attained. For instance, an indithose adults 18 years of age and older and vidual who is not currently employed may who were living in community based residen need to be supported in order to obtain emtial settings were selected to be part of this ployment to meet basic subsistence needs. Alstudy. Thus, only those persons living in sin ternatively, where those inhibitors have been gle family homes, apartments or rooming addressed, services can be funneled towards houses were included in these analyses. Per enhancing contributors, or those quality of sons from congregate care facilities, nursing life features that enhance general life satisfachomes or institutions were excluded for the tion. Thus, supports can be channeled to inpurposes of this study. Our comparisons were creasing social opportunities, social relationtherefore based on persons with and without ships, and recreation/leisure activities. disabilities who, theoretically, had access to In this study, we examined the quantitative the routines, patterns, and activities of typi differences in quality of life factors between cal (non-disabled and non-institutionalized) adults with and without disabilities. Where adults. For a more thorough description of quality of life discrepancies were found the sampling and the demographic character among these two groups, we were able to istics of the entire sample, refer to Sands, identify socially valid targets for intervenKozleski, and Goodwin (1991). tion. Of the 86 persons with disabilities included in this study, 61 % identified their primary dis Methods ability as mental retardation, 13% as cerebral palsy, and 4% as head injury. Another 6% were evenly divided between disabilities of autism, deafness, and emotional disorders. Subjects One hundred and thirty-one persons without Two percent had disabilities in the areas of disabilities and 86 persons with disabilities visual impairments or speech/language. The completed a survey on quality of life indicaindividuals with disabilities were speech/lan tors. Subjects ranged in age from 18 to 70 guage. The individuals with disabilities were years, 32 years on the average. Eighty-eight fairly evenly represented by males (55%) and percent of the total sample were white, 2% females (45%). were black, 7% were Hispanic, 2.5% were There was a significant relationship (X2 Asian-American, and .5% were of American = 56, d.f. = 3, p = .00) between the presence Quality of Life Differences / 91 of a disability and marital status. Of the redeleted. For example, the item "What is your spondents who had disabilities, 95% had primary handicapping condition?" was elimi never been married, and 5% were married. nated. When a service listed in the original Of the respondents who did not have disabilisurvey was a disability specific service, a paral ties, 46% had never been married, 42% were lei non-disabled service was substituted in the currently married, 11 % were separated or dimodified version. For example, one question vorced, and one person was widowed. There asked survey participants to indicate if they was a wide discrepancy in the economic stabilwere members of any consumer/advocacy ity of persons with and without disabilities. group. This item then listed examples of such The income of individuals with disabilities organizations. In the original survey the ex ranged from $0 to over $50,000 per year amples were organizations such as the Associ with a mean income of $ 10,500 and a median ation for Retarded Citizens and People First, of $1,300. Persons without disabilities made Although the modified survey asked the between $5,000 to over $50,000 per year, same question, the examples listed included with a mean income of $17,500. While 65% Green Peace, the Audubon Society as well as of the persons without disabilities owned disability specific organizations, their own homes, only 6% of the persons with disabilities were homeowners (X2 = 72, d.f. Procedures 1 ,p .00). When signed consent was given, the individ uals with disabilities were scheduled for face Instrument to-face interviews with trained interviewers. „ „ . r . _ /-Ti Interviewers, selected because of their pre I he Consumer Satisfaction Survey (Temple . ... , r TT . . , . . . ,. vious experience with survey research, re University, 1988) instrument was originally . r , . . . ' , . , « , « r ceived a three hour training session con designed to evaluate both consumer satisfac, , , ° . . ° , ,. r,.r rj-j i • i i ducted by the investigators. Interviewers tion and quality of life of individuals with de• , , . • , , . , .... . were introduced to the instrument through velopmental disabilities. These constructs . . . . , , , , , , lecture and then were asked to role play ad were examined by responses to items . . . r . . _ , . , , . . , v • • j ministration of the tool. General guidelines grouped into six areas: (a) services received; r ... . , . . r i, . , . . for conducting interview research were re (b) satisfaction with those services; (c) inde. , _ . ° „ . . , . . .. , , ... . viewed. Prior to all interviews, each mter pendence/interdependence; (d) community ... . , ... . , i • ■ , ,r viewer signed a statement guaranteeing the activities; (e) productivity; and (f) needs for _ , ° ,. ,, , . , ' . _ . . confidentiality of all information collected, supports, services and assistance, for this . , . . r .„ , , ,. ■ • , , i,-, Interviews took a minimum of 40 minutes study both the original and a modified ver. r , c , , ... and a maximum of three hours, sion of the tool were utilized. The original „ ,. ., , , j . . , , , Survey instruments were distributed to tool was administered to the sample of indi' . , ..... . , . persons without disabilities by a research as viduals with disabilities. A modified version r. . . • , ■ , . . , , ,. , i , . . sistant. Participants were recruited through was used with the non-disabled sample. In . . r . ? , ., , . r • classes at university campuses, at community order to tailor the instrument tor use with '. r , ...../ . , .. .... . r . organization meetings, and to individuals individuals without disabilities some of the , , , , ° , , . , randomly selected on an urban shopping survey items required rewording. Some items ' . . . . , , . j T, • , r , street. Participants were asked to complete were deleted. 1 o determine the scope of the , r, . , . , . . , r j i i_ r the survey at their leisure and return it by changes, a group of adults who were not fa., . ,r , , , , , ... . , "i c , , r , , , ,. , mail in a self-addressed, stamped envelope miliar with the field of developmental disabili, » -, , , , , • , , r i that was provided. Instruments were distrib ues completed the survey and provided feed, , , , , • i , , r ,. , ' r x ■ uted and returned over a three month period back regarding the transparency of each item r . _ „ , . r „ . • , of time. Out of the 150 survey instruments as well as its applicability to persons without , ,. ., , ,. .... . ,, , . that were distributed, 133 were returned disabilities. On the basis of this feedback min , , , , • (89% return rate), imal alterations were made to the instrument. To the greatest extent possible, questions in each survey category were not changed. However, two categories of changes were All data were coded and entered into SPSS Data Analysis