Self-determination and lifestyle satisfaction of 80 adults with mild or medium mental retardation living in group homes or their parents' homes were examined. They were assessed in regard to self-determination, as indicated by choices made in the domestic, financial, health, social, and work domains. Lifestyle satisfaction with residence, the community, associated services, and employment was also assessed. Results show that those from group homes were lower on self-determination but higher on lifestyle satisfaction, providing support for the commitment to normalization and community inclusion to enhance lifestyle satisfaction. However, questions about the extent to which people with mental retardation are afforded decision-making opportunities and self-determined behavior remain. We suggest that service providers and caregivers should encourage and create such opportunities.
Editor in charge: Steven J. Taylor
Self-determination has been defined as the capacity to choose and to have those choices be determinants of one's own actions (Deci & Ryan, 1985). It consists of two critical components: an attitude that leads people to define goals for themselves and the ability to take the initiative to achieve those goals (Mahon, 1994). Hughes and Agran (1998) delineated four facets of self-determination: (a) skills used to manipulate the environment shaped by the individual's experiences, (b) internal drive and ability to choose and act in accordance with one's needs, (c) shared communication within social relationships, and (d) political action.
Professionals in the field believe that almost all individuals, including those with disabilities, have the ability to express and communicate their preferences and to participate in making decisions that shape their daily lives (Faw, Davis, & Peck, 1996; Stancliffe, Abery, Springborg, & Elkin, 2000). Despite this prevailing belief, however, the notion still exists that those considered to have significant intellectual disabilities cannot be self-determined (Wehmeyer & Bolding, 1999). The underlying assumption of self-determination is that all adults can and should have control over their lives, given the appropriate support (Bambera, Cole, & Kroger, 1998; Olney, 2001).
Indeed, the ability to make decisions has been identified as one of the main characteristics of self-determination. Current theories of decision-making derive originally from economic theory and have been applied in many domains, such as consumer behavior. They involve highly rational processes for reaching decisions, requiring careful consideration of all available information about the alternatives and their attributes or consequences (Conroy, 2001; Stancliffe, 1995; Stancliffe, Abery, Springborg, & Elkin, 2000). Despite the emerging realization of the importance of self-determination among people with mental retardation, relatively few studies have documented the extent to which these individuals exhibit this quality in their lives (Houghton, Bronicki, & Guess, 1987; Jaskulski, Metzler, & Zimmerman, 1990; Kishi, Teelucksingh, Zallers, Park-Lee, & Meyer, 1988; Levin & Langness, 1985; Murtaugh & Zetlin, 1990). In addition, researchers examining the self-determination of individuals with mental retardation have focused on relatively minor decisions, such as food preference and leisure activities (Dattilo & Rusch, 1985; Newton, Horner, & Lund, 1991; Parsons & Reid, 1990; Williams & Dattilo, 1997). Moreover, the few attempts made to study the decision-making processes of this population have not been fruitful because people with such disabilities cannot describe their thinking patterns as they are reaching a decision.
In addition, opportunities to make decisions or to exercise choice in matters that directly affect daily life are often conspicuously absent for persons with mental retardation (Faw et al., 1996; Kishi et al., 1988). The environments in which individuals live, work, and learn influence the exercise of personal control, with some environments being more supportive of self-determination than others (Abrey & Stancliffe, 1996; Wehmeyer & Bolding, 1999). For persons with mental retardation, it is often the case that daily routines, including work and leisure activities, are determined by service providers (Baggerman, Sheldon, Sherman, & Harchick, 1990).
A national consumer survey of the self-determination of people with mental retardation (Wehmeyer & Metzler, 1995) revealed that the opportunity to participate in decisions affecting their lives is related to the importance of the decision. Although choosing one's residence is one of the major decisions that adults must make, the residential placement of individuals with mental retardation is primarily decided by those legally responsible for them. Thus, in the present study we focused on the differences in self-determination and lifestyle satisfaction between people with mental retardation who live in a community residence and those who live in their parents' home.
In order to improve the quality of life of people with mental retardation, professionals in the field believe that efforts should be made to increase such individuals' experience of control over major life events and the extent to which they perceive themselves as being self-determined (Henderson, 1994; Stancliffe et al., 2000). Indeed, the independent living and the leisure literature suggest that one of the ways to empower individuals with mental retardation is to enable them to make decisions for themselves (Schalock & Keith, 1993; Stancliffe et al., 2000). Most importantly, there is evidence that people with cognitive impairments can learn to exercise choice and to make personal, independent decisions (Mahon, 1994; Mahon & Bullock, 1992; Williams & Dattilo, 1997).
Not only can individuals with mental retardation learn to express preferences in a variety of situations, they can also facilitate positive behavioral outcomes when given the opportunity to choose based on those identified preferences (Conroy, 2001; Mithaug & Mar, 1980; Parsons, Reid, Reynolds, & Bumgarner, 1990; Wehmeyer & Metzler, 1995). In their study on substitute decision-making and personal control, Stancliffe and his colleagues (2000) found that individuals with mental retardation with no court-appointed substitute decision-maker exercised significantly more personal control than did those with a conservator. Therefore, the means and opportunities to enable people with mental retardation to make decisions for themselves should be further developed, and significant efforts should be made both to involve them in all decisions and to minimize the number of matters over which others exercise control.
Researchers have claimed that one major facet of the normalization principle is to create conditions through which the choices, wishes, and desires of persons with disabilities are taken into account as much as possible in the actions affecting their lives (Nirje, 1972). Indeed, the development of community-living programs in the 1960s in the United States was an outcome of the normalization principle and the emergence of attitudes favoring full societal inclusion and self-determination. The concept of community integration, which involves the physical integration of persons with mental retardation into community life, gained increasing momentum. Moreover, with the growth of the self-advocacy movement, a new dimension of empowerment was added to the contemporary philosophies of community living (Goldberg, Mclean, LaVigne, Fratolillo, & Sullivan, 1990; Henry, Keys, Jopp, & Balcazar, 1996).
Sparked primarily by the self-advocacy efforts within the population with disabilities (Heller, Miller, Hsieh, & Sterns, 2000; Kennedy, 1993; Williams, 1989), increasing attention is being paid by educators and service providers to promoting the self-determination of people with mental retardation through changes in policy and program development. Such programs have led to increased initiation of leisure activities, enhanced feelings of control, and greater independence among members of this population (Gaudet & Dattilo, 1994; Searle, Mahon, Iso-Ahola, Sdrolias, & Van Dyck, 1995; Williams & Dattilo, 1997).
In Israel, where the present study was conducted, the deinstitutionalization movement has taken a different, and less progressive, course than in the United States. The emergence of community-living programs has not affected the existing institutions, which remain as the major alternative for out-of-home placement (Shnit, 1997). Government policy once dictated only two patterns of out-of-home placement, either foster care or institutionalization (Hovav & Ramot, 1998). In the late 1970s, a community-oriented approach was adopted to foster the development of community services. In 1993, the Ministry of Labor and Social Affairs issued a clear policy concerning the waiting list for out-of-home placement, allowing families to choose the best option for placement. Community services would be improved, and parents would be encouraged to opt for long-term treatment in the community. In 1994, the Ministry redefined the criterion for placement in community housing to include any person who may benefit from living in the community.
The first community home was founded in 1969, and since then many new arrangements in the community have been created. The community-living setting is currently undergoing significant changes, from physical integration in the community to full integration. In 1993, 598 persons with mental retardation were living in community arrangements, and by 1999, 1,150 individuals were benefiting from community living, with about 160 persons from residential care having moved to community housing (Shnit, 1997). The initiative for and organization of community housing was assumed mainly by local public and nonprofit parents' organizations but was lacking in global policy and structure (Shwartz, 1993b).
Public organizations now provide 75% of the services, with the other 25% belonging to the private sector. The trend is to develop small programs with maximum abilities for inclusion, enabling full independence and high quality of life (Hovav & Ramot, 1996). These changes have brought the country's policy makers to recognize the importance of self-determination and freedom of choice for people with mental retardation. Therefore, policy makers that service providers in the community-living setting will offer members of this population the conditions needed to express their preferences and make choices.
In sum, despite the progress made, the question remains as to which living arrangement provides people who have mental retardation with the most opportunities to express their preferences and make decisions based on those preferences. Furthermore, investigators must determine whether such conditions are related to a high level of lifestyle satisfaction. A claim often made by advocates of the deinstitutionalization movement is that residential and day services for persons with mental retardation in the community will assure their lifestyle satisfaction. This claim, however, is not necessarily tenable and must be empirically investigated. Lifestyle satisfaction needs to be assessed according to the personal viewpoint of the individual clients themselves (Heal & Chadsey-Rusch, 1985). Indeed, in several studies examining quality of life issues of individuals with mental retardation, friends and leisure time activities were reported as the main ingredients of happiness or satisfaction (Birenbaum & Rie, 1979; Birenbaum & Seiffer, 1976; Hull & Thompson, 1980; Schalock, Harper, & Carver, 1981; Seltzer, 1981).
In the present study our aim was to examine whether self-determination is higher and associated with higher lifestyle satisfaction among persons with mental retardation living in community-based residential facilities than among those living in their parents' homes. The following hypotheses were formulated accordingly: (a) Persons with mental retardation who live in group homes will show higher self-determination than will those who live in their parents' homes. (b) Persons with mental retardation who live in group homes will be more satisfied with their lifestyle than will those who live in their parents' homes. (c) Persons who have mental retardation with higher self-determination will be more satisfied with their lifestyle than will those who have lower self-determination.
Eighty adults (47 females, 33 males) with developmental disabilities, as defined by mild, mild to medium, or medium levels of functioning in accordance with the diagnostic services of the Israeli Work and Welfare Ministry, Office of Mental Retardation participated. The Ministry uses the following definitions:
Mild: Independence in most of the 10 factors of the activities of daily living (communication, self-help, health, security, leisure, employment, self-direction, social skills, ability to use environmental resources, and cognitive functioning) and limited support needed in crises or transitions.
Mild to Medium: Independence in only some of the activities of daily living factors. Although support is needed in other factors on a regular basis, it is limited to short periods of time, primarily for accruing the most essential skills.
Medium: Limited support is needed in all factors of activities of daily living. The support is on a regular basis for a short time, mostly for direction and training in activities of daily living skills and abilities.
The average age of participants was 33 years (standard deviation [SD] = 10.3, range = 19 to 56). All were employed in vocational rehabilitation settings, and all volunteered to participate in the study.
In accordance with study aims, half of the participants, who constituted the parental home group, were still living with their natural families at the time of the study. The other half had been living in a community residence (i.e., hostels) for an average of 52 months (SD = 60, range = 3 to 240), and they constituted the group home participants. The demographic characteristics of the two groups are presented in Table 1.
As can be seen in Table 1, the gender proportions were equal in the two groups, χ2(1, N = 80) < 1, and the functional levels did not differ significantly between the groups. However, the two groups differed on mean age, with the group home participants being significantly older than the parental home participants, t(78) = 5.51, p < .0001. In addition, analysis of parents' marital status showed that most parents of parental home participants were married, whereas most group home participants had either single parents (divorced or widowed) or both parents were deceased, χ2(1, N = 80) = 31.3, p < .001.
The following questionnaires were used in the study:
Choices Questionnaire (Stancliffe, 1995). This instrument, designed to measure the self-determination of adults with mental retardation, consists of 26 choices in five life domains: Domestic (domestic activities with staff and the other people with whom the person lives), Money (money and spending), Health, Social (social activities, community access, and personal relationships), and Work (work/day activities); as well as one overall choice item. Each item is rated on a 3-point scale, with a high score representing a high level of self-choice (3 referring to free choice or making one's own decisions and 1 indicating that others make the choice for the individual). The internal reliability of the English version of the questionnaire is satisfactory, Cronbach alpha = .81.
The questionnaire was translated into Hebrew by the third author, and the reliability of the translation was checked by the first and second authors. The authors met to discuss the details of the translation and to reach agreement as to the final version of the questionnaire. Item 6 was deleted because of its irrelevance to living in the parents' home (“Who picks the staff to work in your house?”). The psychometric data on the subscales of the self-determination measure are presented in Table 2. As can be seen in the table, the total scale reliability is satisfactory (.75), whereas the subscales show lower reliabilities that are possibly attributable to the small number of items in each scale.
Life Satisfaction Scale (Heal & Chadsey-Rusch, 1985). This instrument measures the satisfaction of people who have mental retardation with their living conditions (i.e., their residence, the community, associated services, and employment). It consists of 28 items divided into five subscales according to the following domains: COMSAT (community satisfaction), PALSAT (friends and leisure time satisfaction), SVCSAT (satisfaction with rehabilitation services), JOBSAT (one item of job satisfaction), and GENSAT (general satisfaction). Each subscale is scored after reversing the appropriate items so that a high score represents high satisfaction (see Heal & Chadsey-Rusch, 1985). A total satisfaction score (TOTSAT) is composed of the mean of the first four scales. Each item is rated on a 5-point scale (+2 = highly positive; +1 = positive; 0 = neutral;−1 = negative; −2 = highly negative). The subscales are given equal weights, with a possible score range of −20 to +20. The internal reliability of the English version is relatively high, Cronbach alpha = .85.
The questionnaire was translated into Hebrew and adapted to the Israeli culture (Ben-Menachem, 1997). In addition, two questions that are irrelevant to living in the parents' home were deleted from the present analysis (i.e., Item 3: “Where did you live before you lived here? Did you like it better there or here?” and Item 29: “Would you like to go back to ___ (use response from Question 3). Table 2 also presents the psychometric data of the Life Satisfaction Scale subscales. As can be seen in the table, the total scale reliability is satisfactory (.78), whereas the subscales show medium to low reliabilities, presumably due to the small number of items in each scale.
The 80 adults with mental retardation participating in the study were each interviewed individually in a quiet room by the third author. The interviews were conducted after we obtained agreement for participation and provided a detailed explanation of the study. The interviewer read each question and response options and marked the participant's replies. The participants were assured of the confidentiality of the information, and the data were coded and analyzed without personal identification.
All analyses were performed with an SAS program, version 6.09. According to the first hypothesis, we expected to find a higher level of self-determination among the group home participants than among the parental home participants. Table 3 presents the means of the self-determination subscales and total scales for the two groups. A multivariate analysis of variance (MANOVA) applied to the self-determination subscales revealed significant effects for living arrangement, F(5, 74) = 13.04; p < .0001. The one-way ANOVA tests conducted for each subscale separately showed significant effects for the subscales of Domestic activities and work activities, Fs(1, 74) = 39.96 and 12.76, respectively; ps < .001. As can be seen in Table 3, the results were contrary to the hypothesis: For both subscales, the means were lower in the group home than in the parental home group. The effect for the total self-determination score was also significant, F(1, 78) = 10.72; p < .001. Thus, self-determination is found to be lower among group home participants than among parental home participants.
Due to the fact that the two groups of participants differed in terms of age and parents' marital status, the contribution of living arrangement to self-determination was assessed while controlling for these variables as well as gender and functional level. To control for these background variables, we treated total self-determination as the dependent variable and living arrangement (parental home = 1; group home = 2), parents' marital status (married = 1; single or deceased = 2), age, gender (men = 1; women = 2), and functional level (1 = mild; 2 = mild to medium; 3 = medium) were included as the independent variables, with a resulting multiple R2 of .29, F(5, 74) = 5.99, p < .001.
The results showed that living arrangement, age, gender, and functional status significantly contributed to the self-determination scores, as depicted in Figure 1. Thus, self-determination, apart from being much higher among parental home than among group home participants, was also higher among older than among younger people, among men than among women, and among people with a lower level of mental retardation.
Our second hypothesis was that a higher level of lifestyle satisfaction would be found among the group home participants than among the parental home participants. Table 3 also presents the means of the Lifestyle Satisfaction Scale subscales for each of the four domains as well as the general and total scales for the two groups. The results of a MANOVA test applied to community (COMSAT), friends and leisure (PALSAT), services (SVCSAT), and job satisfaction (JOBSAT) subscales showed significant effects for living arrangement, F(4, 75) = 13.05, p < .0001.
Thus, the second hypothesis was confirmed, and as can be seen in Table 3, the group home participants reported higher lifestyle satisfaction than did the parental home participants on each of the subscales. Indeed, the one-way ANOVA tests conducted for each subscale separately showed a highly significant effect for the PALSAT (Friends and Leisure Satisfaction) subscale, F(1, 78) = 43.32, p < .0001. The Services (SVCSAT), General (GENSAT), and Community Satisfaction (COMSAT) subscales also showed significant, albeit smaller, effects, F(1, 78) = 4.17, 4.79, and 4.02, respectively; ps < .05, whereas the living arrangement effect for the work satisfaction subscale was not significant. The effect for total satisfaction was found to be highly significant, F(1, 78) = 25.66, p < .0001.
In order to control for background variables, we conducted a multiple regression analysis, using total life satisfaction score as the dependent variable and living arrangement, parents' marital status, age, gender, and functional level as the independent variables, with a resulting multiple R2 of .32, F(5, 74) = 7.12; p < .001. Living arrangement, as well as age, were found to make significant contributions to life satisfaction scores (see Figure 1). The rest of the variables did not contribute to total life satisfaction. Thus, the higher satisfaction of individuals with mental retardation in the group home setting was retained even after controlling for confounding factors. The analysis also shows that older people with mental retardation exhibited more life satisfaction than did their younger counterparts.
Finally, we hypothesized that self-determination and lifestyle satisfaction would be positively correlated. We found, however, that the associations between the measures of lifestyle satisfaction and the self-determination scales were nonsignificant overall. Yet, when the correlations were examined separately for the two living arrangements, the individual subscales revealed significant correlations for self-determination in relation to Domestic Activities and the Satisfaction subscales, as well as the Total Life Satisfaction Scale. These correlations were found only for the parental home participants; (see Table 4). Thus, people who live with their parents and demonstrate higher domestic self-determination show higher levels of lifestyle satisfaction.
In light of the fact that participants differed in the length of time spent living in the group home (range of 3 to 240 months), we tested the associations between time duration and the main study variables. Length of time spent living in the group home was found to be only marginally related to total lifestyle satisfaction, r = .28, p = .08. None of the Lifestyle Satisfaction subscales or the Self-Determination subscales were related to this variable. In addition, gender, parents' marital status, or functional level did not correlate with length of time spent living in the group home.
Community programs have been treated in the literature as one of the essential conditions by which the choices and desires of persons with disabilities are taken into consideration as much as possible in the actions affecting their lives (Nirje, 1972). More recently, there has been a movement among educators and service providers away from controlling individuals with disabilities and toward supporting self-determination (Olney, 2001). Therefore, in the present study we tested the association between living arrangement and self-determination, expecting people with mental retardation who live in group homes to be higher in self-determination than are those living in their parents' homes. Contrary to this first hypothesis, the group home residents were found to be lower in self-determination than those people living with their parents.
These results support Wehmeyer and Metzler's (1995) finding in their National Consumer Survey that individuals with mental retardation had no say in selecting a roommate or in choosing their particular placement in a group home. Similarly, Lord and Pedlor's (1991) study on choices available to residents of group homes showed that residents are seldom afforded the opportunity to exercise freedom of choice or to make decisions (such as menu planning, leisure time activities, or purchasing clothes). Stancliffe (1995) compared staff and residents' perceptions of the opportunity for choice available in group home settings and found that staff attitudes were a major factor in enabling the residents to choose. Stancliffe found that a semi-independent living arrangement was the most conducive setting for exercising choice and making decisions.
Self-determination has been characterized as a set of learned behaviors and skills, derived mainly from educational and home environments, which enable an individual to make decisions and solve problems. The actions of self-determined people allow them to fulfill roles typically associated with adulthood (Conroy, 2001; Palmer & Wehmeyer, 1998). However, communicative initiative leads to self-determination only when others in the environment understand and respond appropriately (Olney, 2001). Therefore, education plays a critical role in achieving self-determination.
The present study results suggest that educational and community-based environments are overly structured or overprotective and do not place sufficient emphasis on opportunities for people with mental retardation to make meaningful choices and decisions. Thus, people with mental retardation may not be perceived as capable of assuming adult roles. In addition, service providers face difficulties arising from the conflict between issues of protection and safety versus autonomy and risk. Hence, attention should be focused on more than just teaching specific skills. We should also alter the environments within which people with mental retardation live in order to allow them greater choice and control as well as examine and modulate the attitudes of service providers, educators, families, and others who interact with them.
In this study, we assessed the association between living arrangement and self-determination while controlling for the background variables of age, gender, functional level, and parents' marital status. Self-determination was found to be higher among older persons, men, and individuals with a higher level of functioning. As self-determination is a learned skill, older people or those at a higher level of functioning may acquire it with greater ease than younger people or those at a lower level of functioning. It may be also be the result of parents' attitudes in terms of a differential emphasis for males and females. Thus, results of the study also suggest that other factors apart from living arrangement may be related to self-determination.
The second hypothesis for which we tested the association between living arrangement and lifestyle satisfaction was confirmed. Persons with mental retardation who live in group homes were found to be more satisfied with their lifestyle than were those who live at home. It seems that the most meaningful domains of lifestyle satisfaction related to living arrangement are the availability of social life and leisure activities as well as the accessibility to community services and work opportunities. Likewise, in their study on quality of life among persons with learning disabilities, Bendov and Rieter (1997) found that opportunities for employment and working conditions were the major factors contributing to their perception of quality of life.
In addition to the association between living arrangement and lifestyle satisfaction, older people were found to exhibit more life satisfaction than did their younger counterparts. As people with mental retardation age, they may undergo an adaptation process that leads to greater satisfaction with their lives.
The third hypothesis was that self-determination and lifestyle satisfaction would be positively associated. However, we found that the associations between the measures of lifestyle satisfaction and the self-determination scales were not significant overall. Lifestyle satisfaction is, therefore, not related to self-determination and may be largely influenced by external factors, such as social life, leisure activities, employment opportunities, and community services. Yet, we note that within the parents' homes, the Domestic subscale of the Self-Determination Scale was related to almost all facets of lifestyle satisfaction. Thus, under the appropriate conditions, where people with mental retardation can find real opportunities to exercise choice based on self-made preferences, self-determination may be related to life satisfaction.
This possibility was also explored by Conroy (2001) in the Monadnock Self-Determination Project, in which he tested the theory that moving decision-making away from professionals and bureaucrats and toward people with developmental disabilities would enhance their quality of life. After 18 months, the enhancements in the participants' quality of life were found to be dramatic.
In the present study we found no associations between the length of time spent living in a group home setting and either self-determination or lifestyle satisfaction. However, we did not assess behavioral problems or aspects of deviant behavior and their associations with self-determination, which is recommended as an area for future research.
The results of this study provide support for the commitment to normalization and inclusion of people with disabilities in the community as a means to enhance lifestyle satisfaction. Likewise, in their study of residential alternatives for persons with developmental disabilities, Stancliffe and Lakin (1998) concluded that community settings produce better outcomes in every area of life evaluated. The deinstitutionalization movement is evidently beneficial to people, regardless of the severity of their disability. However, if people with disabilities are to become more self-sufficient citizens, better able to manage their own lives, and succeed in their role as adults, promoting self-determination skills needs to become a critical part of the educational services provided (Conroy, 2001; Wehmeyer, 1997).
In sum, policy makers and service providers should adopt client-centered approaches to service planning, which will assist individuals in achieving satisfying and diverse lifestyles. Service providers and caregivers also need to encourage and create opportunities for decision-making and self-determination among persons with mental retardation. Such opportunities should be preceded by experiences leading to a realistic self-awareness, self-confidence, and positive efficacy and outcome expectations. Thus, environments should be structured to allow individuals with mental retardation maximal control over their options, to ensure that the options are clearly defined, and to help them become aware of their preferences without being under pressure from caregivers or service providers.
Like self-determination, quality of life is related not just to the environment and to the external circumstances of an individual's life, but to his or her sense of well-being, achievement, and freedom. A person's relative self-determination is found to be a strong predictor of quality of life; people who are highly self-determined experience a higher quality of life (Conroy, 2001; Wehmeyer & Schwartz, 1996).
In Israel, we have achieved the first step to a high quality of life by moving people with mental retardation into community-living arrangements. However, in order to achieve complete satisfaction through lifestyle and personal well-being, we should focus more on the educational process that will adequately prepare people with special learning needs to become self-determined individuals.
Note: This work was supported by the Center for Rehabilitation and Human Development in the School of Social Work, University of Haifa.
Authors:I. Duvdevany, PhD, Senior Lecturer ( email@example.com), H. Ben-Zur, PhD, Assistant Professor, and A. Ambar, MSW, former graduate student, School of Social Work, 18 Mount Carmel, University of Haifa, Haifa, Israel 31905