Impact of person-centered later life planning training program for older adults with mental retardation.
Rappaport (1987) has defined empowerment as a "belief in the power of people to be both the masters of their own fate and involved in the life of their several communities." Empowerment strategies include both a focus on help-seeker's behaviors and skills, and help-givers' roles in helping relationships (Dunst, Trivette & Deal, 1988). To increase empowerment, the help-seeker or learner needs to develop: 1) access and control over needed resources; 2) decision-making and problem-solving abilities; and, 3) instrumental behaviors needed to interact effectively with others to procure resources. A broader ecological approach to empowerment also assumes that: 1) people are competent or have the capacity to become competent; 2) poor functioning is due to failure of the social system to create opportunities for competency to be displayed; and, 3) when new competencies need to be learned, the learner must attribute behavior change to his or her own actions if one is to acquire a sense of control and self-efficacy.
This empowerment model suggests that interventions be designed to mobilize resources on behalf of individuals and to empower individuals to deal more effectively with their environment. A major consequence is increased well-being and enhancement of problem solving abilities. Assuming responsibility for solutions to problems has consistently been related to positive affect and enhanced well being. Also, research has indicated that people who report a greater sense of self-efficacy in producing behavior change are more likely to maintain those behaviors and display positive responses (Brickman et al., 1982). Hence, the training intervention in later life planning aims to increase empowerment of older persons with mental retardation by: 1) enhancing their abilities to make decisions through provision of information, skill training, and opportunities to experience new options and make informed choices, and 2) training help-givers (professionals, families) to better assist individuals in identifying what is important to them, to provide opportunities for people to make choices, and to support people in the choices they make while helping them understand the meaning and potential outcomes of their choices.
In discussing expected outcomes of empowerment in the planning process for people with developmental disabilities, Mount and Zwernik (1988) note that the "focus is on opportunities for people with disabilities to develop relationships, have positive roles in community life, increase control of their own lives, and develop the skills and abilities to achieve these goals."
In American society today, there is a general consensus that people are entitled to new choices and experiences at the end of their working years. More recent trends suggest that part-time work, phase down, full-time retirement and second careers or new and different work and leisure experiences are all viable options (Dykwald, 1990). Individual as well as work-related factors influence the retirement decision (Atchley 1990; Stems, Matheson & Schwartz, 1990). Among these are health, income, a positive attitude, and pre-planning. Stems et al. 1990) found that the planning factor is highly significant, leading to higher satisfaction and better adjustment to the retirement process. Having a voice in the decision and plan also has been identified as significant, generally correlating with higher life satisfaction and better health (Kimmel, Price & Walker, 1978).
These factors identified for the general population also apply to older persons with mental retardation, with differences in context. However, a study by Sutton, Stems and Schwartz (1992) found little or no information about later life options available to persons over fifty-five in a four-state area. "Pre-retirement" education was virtually absent, and general practice consisted of staff making transition plans for the individual based on observation of decreased energy, health and interest in work. Activities available to "seniors" in day program settings were reportedly limited and not innovative. The study also found limited evidence of direct involvement in the decision-making process and choices affecting their later years.
Long-term plans for living arrangements, financial security, and guardianship are frequently not made by families of persons with mental retardation (Heller & Factor, 1993). Older adults with mental retardation are rarely provided the opportunity to discuss these future plans. The majority of the families report either that their relative with disabilities would not understand the issues or that the topic is too anxiety-provoking (Heller & Factor, 1993). In their study of residential transitions from nursing homes and from the natural home, Heller and Factor have noted that at least half of the residents would like to eventually move to another setting. Often they have insufficient information about possible options.
These findings highlight the importance of developing and assessing a training and education program addressing later life planning specifically for adults with developmental disabilities, their families, and their service providers. LePore and Janicki (1990) and Cotten (1990) emphasize the importance of conducting pre-retirement preparation training encompassing counseling, informational sessions, and opportunities to experience various options.
The training intervention studied consisted of two aspects: a) a planning content component that focused on later life planning issues and options, and b) a planning process component that focused on individual empowerment issues and skills. It incorporated an approach to planning that: 1) recognizes the importance of involving persons with developmental disabilities and their families in lifespan planning; 2) emphasizes that choices are to be made based upon reliable and comprehensive information; 3) utilizes generic aging network services when appropriate to provide community integration with peers and to avoid duplication of services; and 4) presents program options beyond the traditional developmental disabilities service system.
Its major goals are to: 1) increase the participants' knowledge of later-life options; 2) facilitate greater individual choice and participation in decisions affecting the participant's life; 3) facilitate setting of realistic goals by the participant; 4) maintain/increase individual's wellness behaviors; 5) increase individuals' participation in leisure and recreational activities, including participation in community-based activities; 6) increase individual life satisfaction; and 7) change staff behavior to facilitate greater encouragement of personal choice making among older adults with mental retardation.
The intervention program evaluation addresses the following research questions:
1) What is the impact of training in personal empowerment and later life planning on the life satisfaction, leisure and recreation activity, social support resources, and opportunities for daily choice-making of adults with mental retardation over a period of 6 months?
2) What is the impact of this training on knowledge regarding personal choice making and retirement options?
3) What is the impact of training in personal empowerment and later life planning on the planning process itself, including the congruence between the individual's stated goals and their individual service plans, and the individual's degree of participation in individual service planning meetings?
4) To what extent does the training program affect staff's behaviors at individual service planning meetings in terms of facilitating choice-making among older adults with mental retardation?
Sample and Setting
The sample included 70 adults with mental retardation who were either age 35 years and older with Down syndrome or were age 50 and over with mental retardation, but without Down syndrome. The participants were obtained from seven intervention sites (five in Illinois and two in Ohio) and four comparison sites (two in Illinois and two in Ohio). The intervention group who received the training (n=42) included 24 adults in Illinois and 18 in Ohio. A comparison sample of 37 people were assessed but did not receive training. These included 24 in Illinois and 13 in Ohio. There were no significant differences between the intervention and comparison groups and between the samples in the two states in age, sex, or level of mental retardation. There was however, a significant difference between the two state samples in race of participants, with all but one of the 22 African-Americans in the sample residing in Illinois. The age of the sample ranged from 35 to 87 years with a mean of 57 years. Level of mental retardation included 47% mild and 53% moderate retardation. About 35% of the sample lived with relatives, 8% in foster homes, 16% in independent or semi-independent settings, and 38% in residential programs. Vocational activities included sheltered workshop (66%), work activity (25%), day activity (5%), and supported job placement (1%).
The design included assessments of the individuals with mental retardation in both the intervention and comparison groups prior to the training (pre-tests) and 6 months after the pre-tests. Observations of individual service planning meetings occurred for both groups during the year following the training period.
Assessment procedures were standardized across the different sites. Joint training in the assessment process was conducted with Illinois and Ohio field staff. All the observers and interviewers were graduate students (in psychology, social work, or public health) or were project directors.
The pre-training assessment measures included: the 1) Later Life Planning Inventory (LLPI), 2) Inventory for Client and Agency Planning (ICAP) (Bruininks et al., 1986), and the 3) Later Life Curriculum Test.
LLPI. The LLPI, which is conducted through an interview with the individual, is an inventory which includes the Life Satisfaction Scale, which was adapted from the Life Satisfaction Scale for Aging Adults with Mental Retardation (Hawkins, Eklund, & Martz, 1992); the Leisure Inventory (Hawkins, Eklund, & Martz, 1992); the Social Support Network Index (Heller & Factor, 1992); and the Daily Choice Inventory (adapted from Kishi et al., 1988). A test-retest (using pearson correlations) was conducted on the measures newly developed for the projects with 13 of the subjects randomly selected. The same questions were administered twice, two months apart. The Life Satisfaction Scale includes 21 items in 5 domains: a) health, b) leisure/recreation, c) work, d) residence, and e) social support. Items are rated on a three point scale from "-1" (unhappy with current situation) to "+1" (happy with current situation). Alpha reliability on the current sample was .82. The alpha reliabilities on the domain subscales were moderate to high ranging from .50 to .82. The test-retest was .83 for the total score. With the exception of the health and work domains, which had low test-retest reliability, the domain coefficients ranged from .58 to .84. The Leisure Inventory consisted of 50 activities in which persons are asked whether they do the activity, if they would like to do the activity "more", "same", or "less", and if they are not currently doing it whether they would like to do it. Photographs are used to illustrate each activity. The alpha reliability on the measure of activities they are currently doing was .92. The Social Support Network Index asks the persons if they get help from parents, other relatives, friends, or staff in nine support functions. The alpha reliability was .48 and the test-retest was .95. The Daily Choice Inventory included 12 items in which persons are asked to what extent they get choices. Responses range from "never" to "whenever I want to". There was an additional item that checks for acquiescence and is not used in the analysis. The alpha reliability of the scale was .86.
ICAP. The ICAP, which was filled out by agency staff, includes demographic data and scales of adaptive behavior and maladaptive behavior. It was administered only at the baseline assessment. Only the demographic data were used in the current analyses.
Curriculum Test. The Later Life Planning Curriculum Test, developed for this project, included 52 items assessing knowledge attained in the training. All items are rated from "0" (not correct) to "2" (correct with major relevant points included). These items reflected each of the major topics covered in the training intervention.
Six months after the training both groups were assessed with the LLPI and the Curriculum Test. To assess the impact of training on the planning process, the following types of data were gathered: 1) preferences and choices prior to and after the training (both groups); 2) observations by project staff during the first service planning meeting following the training to assess individual participation and the degree to which staff facilitate choice and preferences of persons with mental retardation using the Service Planning Observational Tool developed for the project; and 3) written goals and action plans resulting from the service planning meeting, which were assessed for the extent to which they incorporated the individual's preferences.
The Service Planning Observational Tool. Consisted of 36 items of which 22 were used in the present study. The first 15 items consisted of ratings of five aspects of service planning meetings: 1) discussion of the individual's desires, 2) review of the individual's past goals, 3) discussion and implementation of goals and action plans, 4) discussion of weaknesses and barriers, and 5) discussion of strengths and resources. For each of these dimensions, the rater assessed the degree to which a) the adult with mental retardation participated in their service planning meeting either through their own initiations or b) after elicitation from others, and c) the degree to which staff encouraged the person's participation. The remaining 7 items pertained to the tone of the meeting ("tone was positive;" "members listened to each other;" "there was conflict in the meeting") and the degree that staff encouraged the individual's participation overall ("staff explained concepts;" "staff provided positive encouragement," "staff responded sensitively to non-verbal behavior of person," "staff emphasized the person's strengths over weaknesses"). From these 22 items three scales were derived: 1) participation of person with mental retardation (10 items including items a and b across the 5 aspects of service planning meetings), 2) staff encouragement of participation (9 items, including items c across the five aspects of the meeting and the 4 items regarding overall encouragement, and 3) positive tone (3 items listed above). To assess inter-rater reliability 6 raters observed a videotaped staffing and rated each of the above items on a scale of 1-4 (ranging from "never" to "a lot"). The unadjusted coefficient of reliability was .87.
For each goal established at the service planning meeting observers rated the degree to which it reflected the preferences of the person on a scale of 1 to 9 (ranging from "person with mental retardation was not present and his preferences were not mentioned" to "suggested by person with mental retardation"). Also, attendance was taken.
The "Person-centered planning for later life: A curriculum for adults with mental retardation" (Sutton, Heller, Sterns, Factor, & Miklos, 1993) was used. Training topics included: 1) making choices, 2) current and potential living arrangements; 3) work options including part-time, volunteer and new work roles; 4) health and wellness; 5) use of leisure time and recreation; 6) use of informal and formal supports; 7) making action plans; 8) participating in service planning meetings; and 9) self-advocacy strategies.
Training was conducted in work sites or day programs with a vocational emphasis, since the issue of retirement or later-life roles and activities is most germane to those who have been engaged in vocational activities, and since these persons are most likely to be facing decisions about potential major changes in daytime activities as a function of aging. These changes may include retirement, reduced work hours or days, or flexible participation in current day service activities or other activities of their own choosing (e.g., generic community-based activities, hobbies, new experiences). Other options may include programs used by younger persons with or without mental retardation or involvement in programs for older adults, in addition to programs designed specifically for older adults with mental retardation.
Training was conducted in small groups of 5-7 in weekly two hour classes and in off-site field experiences over 15 sessions by project staff and a co-trainer from the vocational center. The first two sessions, which focused on choice-making, were co-taught by a peer trainer. The combined impact of a comprehensive curriculum guide, student handbook, visual aids, and practical experiences both on-site and in the community is intended to present the positive opportunities of later life and the personal growth model of aging. The aim is to enable them to make choices from a larger range of options presented in such a way that they relate to their individual circumstances. The training modules encourage participants to express choices, learn about realities affecting their choices, learn how to advocate for their choices in planning meetings, and to promote realistic action plans. Joint action planning among individuals with mental retardation, staff, and family members is incorporated. The last training session brings all these individuals together. As a result of the training overall, the individual develops a written list of desired goals and potential actions which is kept in the student notebook and brought to the planning meeting.
The training events for staff and family members consisted of a full day (six-hour session) and an additional three-hour action planning session which included the person with mental retardation. The emphasis of the training was on teaching staff and family members about later life options for adults with mental retardation and ways that they could support them in making choices and in attaining their goals. This training also provided specific information about aging and mental retardation. Training participants included 48 staff members and 14 family members.
Degree of Choice-Making
As indicated on Table 1 at Time 1 at least 60 percent of the study participants had no choice about the type of work they do, while more than 25 percent of individuals reported that they have no voice in making choices about routine daily activities, for example, what to eat, when to use the phone, and whether or not to clean or decorate their rooms.
Comparison of Intervention and Comparison Groups Over Time
The major analyses compared the intervention and comparison groups on the outcome measures over two time periods (pre-test and 6 months later) using multivariate analyses of variance. A second independent factor, place of residence (in-home versus out-of home) also was included in the factorial design. The outcome measures included: knowledge of choice making and aging issues, life satisfaction, social support, participation in recreation-leisure activities, and daily choice making.
There was a significant time by group effect for the knowledge outcome, with the intervention group increasing significantly more than the comparison group [F(1, 75)=15.78, p=.001). The score of the intervention group increased, while the score of the comparison group decreased (See Table 2). Of the 52 items, 9 items showed a significant increase after the training for the intervention group. Five of these pertained to leisure/recreation information; three concerned retirement, work, and volunteering; and one concerned social support. There were no significant improvements in the knowledge items pertaining to making choices and action plans, health and wellness, and living arrangements. Although they acquired more knowledge regarding retirement options and leisure activities, the intervention group did not show a significantly greater change than the comparison group in percentage desiring retirement using a logistic regression with the group variable and the time 1 retirement preference as independent variables and Time 2 retirement preference as the outcome variable. The percentage wanting to retire went down from 32% to 24% in the intervention group and up from 27% to 34% in the comparison group.
Time 1 Daily Choices
Choices Percent having no choice
Work you do at work place 61 When to have guest in room 31 What decorations in room 26 What to eat 26 When to make phone calls 25 Whether to clean room 25 Whether to be in group activity 24 How to spend money 21 What TV shows to watch 15 Whether to stay up late 14 What to do on time off 12 What to wear 11
[TABULAR DATA FOR TABLE 2 OMITTED]
For life satisfaction there was a significant interaction between group and time [F (1, 66)=5.64, p=.02]. The intervention group decreased in total life satisfaction, while the comparison group increased. When examining each domain of the life satisfaction scale only the residential satisfaction subscale showed even a marginal effect [F (1, 65) =3.85, p=.05)]. There were no significant interaction effects of group by time for either social support or daily life choices.
For participation in leisure activities there was a significant three way interaction between group, residence, and time [F (1, 64)=4.29, p=.04)]. [ILLUSTRATION FOR FIGURE 1 OMITTED]. The participants who lived at home were the only ones who increased their participation in leisure activities at Time 2. The only significant increase over time for the specific leisure activities among the in-home intervention group (McNemar test, p=.02) was in volunteer activities after the training (from 28% to 74%) (p=.02).
The observational ratings were analyzed through t-tests comparing the intervention and comparison groups. (See Table 3). The intervention group staff were significantly more likely to encourage the participation of the individual with mental retardation in the meeting [t (64), p=.002)]. The tone of the meetings was more positive than that of the comparison group to a marginal degree [t (64)=1.70, p=.09]. There were no significant differences between the two groups in the individual's participation in his/her meeting.
Comparisons of the degree to which habilitation goals reflected the preference of the person indicated that for each of the first three goals the intervention group's goals were significantly more likely to reflect the person's preferences [t (49)=49.04, p=.001] [t (35)=3.79, p=.001] [t (20) =19.95, p=.001]. In the intervention group there was a three times greater likelihood (than in the comparison group) (36% versus 12%) that the service planning meeting would include family members.
Observer Ratings of Individual Service Plan Meetings Intervention Versus Comparison Groups
Intervention Comparison Mean (SD) Mean (SD)
Staff Encouragement of Person's Participation 24.67 (5.99) 18.85 (8.26)(**)
Positive Tone 2.82 (2.54) 1.85 (2.06)(a)
Person's Participation 16.27 (4.96) 15.27 (5.87)
Degree to which Habilitation Goals Reflected Preference of Person:
Goal 1 7.16 (1.57) 5.18 (2.95)(**)
Goal 2 7.40 (1.35) 5.08 (2.86)(**)
Goal 3 7.33 (1.47) 4.31 (2.96)(**)
a p [less than] .10
** p [less than] .01
This study delineated the benefits and limitations of a person-centered later life planning training program for adults with mental retardation. First the participants were able to learn basic concepts and skills covered in the curriculum, though some concepts, such as choice-making, and action planning were more difficult for them to grasp. The greatest improvement was in the area of leisure/recreation education. Other researchers (e.g., Datillo, 1991) have reported successes in teaching leisure skills and concepts and in incorporating choice in a leisure program. The trainees also were able to grasp the concepts of retirement and volunteer activities. They had more difficulty grasping the concepts of health promotion, residential options and of choice making rights and responsibilities. It is interesting to note that as we find in the general aging population that there were a number of individuals who wanted to continue working rather than retire. In our study at both times less than one third of the older adults expressed an interest in retiring.
One of the benefits of the training was the increased use of leisure/recreation activities for the trainees who lived at home. Although the number of participants increased for nearly every one of the 50 listed activities, the greatest change was in the number involved in volunteer activities. Several trainees became volunteers through the Retired Senior Volunteer Program, doing such activities as volunteering at the zoo or serving as a foster grandparent for young children in day care. For the trainees who lived in residential programs, the options were much more limited for getting involved in their preferred leisure/recreational activities. Unfortunately, there was insufficient staff involvement in the training and administrative support from the residential programs.
An unintended consequence of the training program was a decrease in ratings of life satisfaction. This was primarily attributed to lower satisfaction with their residential settings. After hearing about other potential options several adults who lived at home and several who lived in more restrictive settings such as nursing homes and larger intermediate care facilities wanted to move out. Increased awareness of options, comparison of their preferences with their current status and raised expectations may have resulted in feelings of dissatisfaction, but at the same time likely created the agenda for action. Future research needs to examine in a longer term follow-up the extent to which goals are attained. If indeed the training results in long-term improvement in living situations, then the short-term effect of residential dissatisfaction is a necessary first step in this transition.
One of the major successes of the training program was its influence on the individual service planning process. The observational data indicated greater participation of family members in the planning meetings, more encouragement by staff of the individual's participation, and greater incorporation of the individual's preference in the written service plan goals for those individuals in the training versus the comparison groups. This was attributed to the involvement of staff and family throughout the training through homework assignments given to participants (e.g., to practice skills) and by their joint participation in the last session on goal-setting. Although the trainees with mental retardation were able to discuss their preferences in the training settings, they did not exhibit these skills in the actual service planning meetings. It seems that they had difficulty generalizing the skills and concepts to the real-life situation. Our suggestion is that future training with the curriculum include more role plays of the planning meetings and more technical assistance to staff regarding the service planning process. As one peer trainer noted "When you see all these professionals sitting around talking about you, you freeze up and don't say anything".
Our data noted that older adults with mental retardation frequently have limited choices available to them. As other researchers who also study younger adults have found (e.g., Wehmeyer & Metzler, 1995) adults with mental retardation are likely to be allowed to participate in choices and decisions about their lives that are of relatively low importance, such as what they wear, but are not likely to be involved in more important decisions, such as the type of work they have. Within the short time frame of this study we did not see significant changes in daily choice-making. It is possible that the impact of training on choice-making needs to be measured over a longer time period. Another possibility is that the training needs to build in more ongoing support for making choices throughout the training.
This study developed and assessed tools for assessing quality of life outcomes and for observations of service planning meetings. Some of the tools and scales that had high reliability showed promise as assessment tools for this population. On the other hand limited reliability of some of the subscales (e.g., the work and health aspects of the life satisfaction scale) caution us against making strong conclusions based on these subscales.
There are several limitations of this study which need to be considered in interpreting the results. One is that the intervention and control sites were chosen to be comparable in each state. Subjects at the intervention sites were then assigned to training groups. We chose this approach so that control subjects would have no exposure to either trainees or staff receiving the intervention. However, given our design, there could be differences between the sites that could explain our results. For example, at some of the comparison sites, subjects and staff received some training on choice making as part of their regular group activities and in-service training. This may have reduced the impact of our training somewhat. Another limitation of the training was the short term follow-up of 6 months. Future research needs to examine goal attainment and well-being over a longer time frame.
After conducting the training we have suggestions for ways to improve the program. These include expanding the role plays to increase generalization, conducting more training with residential staff, and building in a support person from the beginning of training. An essential component that was not consistent across sites, is an administration that is supportive of the project. This includes a willingness to allow sufficient staff time, flexibility in programming, help with transportation, and belief in the rights of persons with mental retardation to make choices and decisions about there personal lives.
This project has been funded by the US Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research, Grant #H133B30069.
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Tamar Heller, Ph.D., Institute on Disability and Human Development, University of Illinois at Chicago, 1640 West Roosevelt Road, Chicago, Illinois 60608. (312) 413-1537
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|Publication:||The Journal of Rehabilitation|
|Date:||Jan 1, 1996|
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