A peer support intervention was developed to support aging caregivers and adults with developmental disabilities in planning for the future. The intervention consisted of a legal/financial training session followed by five additional small-group workshops. Pretest and 1-year follow-up surveys were conducted with 29 families participating in the intervention and 19 control families. Outcome measures included future planning activities, caregiving appraisals, discussion of plans with individuals who have developmental disabilities, and choice-making of individuals with developmental disabilities. The intervention significantly contributed to families completing a letter of intent, taking action on residential planning, and developing a special needs trust. Caregiving burden significantly decreased for families in the intervention and daily choice-making of individuals with disabilities increased.
Planning for the future is a task faced by all individuals as they age. However, due to lifelong support needs and the structure of government supports, planning is particularly important for individuals with developmental disabilities and their families (Freedman, Krauss, & Seltzer, 1997; Heller & Factor, 1993). Key aspects of planning that typically need to be addressed include future living arrangements, guardianship, less restrictive alternatives, financial planning, future vocational and recreational desires, and general lifestyle choices. Without adequate plans and supports in place, individuals with developmental disabilities can face unfortunate situations of emergency placements in inappropriate settings and inadequate financial and legal safeguards when primary caregivers can no longer provide care.
Approximately 75% of adults with developmental disabilities live at home with family caregivers, and 25% of these caregivers are over 60 years of age (Braddock, 1999; Fujiura, 1998; Fujiura & Park, 2003). The extent of aging caregivers providing care to relatives with developmental disabilities is increasing due to three notable trends. First, the life expectancy of individuals with developmental disabilities has dramatically increased, making it common for these individuals to outlive their parents. Second, the aging of the “baby boom” generation has contributed to increased numbers of older families, many unknown to the formal service delivery system. Third, long waiting lists for residential services exist (Prouty, Smith, & Lakin, 2003).
Despite concerns about the future, research indicates that many families have not made concrete plans. Some researchers have reported that fewer than half of families have made plans for future living arrangements (Freedman et al., 1997; Heller & Factor, 1993). Although families are more likely to make legal and financial plans, some make plans that could jeopardize their relatives' government benefits or needlessly deprive them of their rights (Heller & Factor, 1994). The degree to which families plan depends on socioeconomic resources, personal coping styles, and available community supports (Freedman et al., 1997; Heller & Factor, 1991). Often, families from minority racial/ethnic backgrounds are less tied to the service system and less likely to have made formal plans for their relative with developmental disabilities (Heller & Factor, 1991). In general, frequently identified obstacles to planning include lack of information, availability of appropriate services, difficulty affording financial costs of attorneys, benefits derived from the caregiving role, reciprocity of caregiving, and emotional issues concerning one's own mortality (Heller & Factor, 1991).
Several approaches have been taken to support families in planning for the future. Numerous assessments of families' service needs have noted high unmet needs for information regarding legal and financial issues, case management, advocacy, and support groups (Heller & Factor, 1994; Kelly & Kropf, 1995). Providing accurate legal and financial planning information concerning such topics as government benefits, guardianship and alternatives, and special needs trusts is critical. However, the complexity of legal and financial information can be daunting, and information alone may not lead families to make plans. Follow-up with families who attended seminars on legal/financial planning indicated that despite rating such trainings positively, few families had made plans (Preston & Heller, 1996).
Another approach is to use a peer support model to facilitate planning. Smith, Majeski, and McClenny (1996) conducted psychoeducational groups with caregivers of individuals with developmental disabilities. They reported that older families most valued information on future planning and service options as well as the opportunity to interact with other caregivers with similar concerns. Peer support models have the potential to address some of the psychological and emotional complexities involved in planning for the future. Several model future planning projects have to some degree adopted the strategy of families supporting one another in planning (Heller, 2000): The Family Futures Planning Project in Rhode Island (Susa & Clark, 1996), Planned Lifetime Advocacy Network in British Columbia, Canada (Etmanski, 1997), and the Family-to-Family Project in Massachusetts (Community Services Reporter, 1999; Griffiths, 1997). However, little empirical evidence exists documenting the effectiveness of such interventions.
Furthermore, in the majority of previous interventions, staff have not actively engaged individuals with developmental disabilities in future planning. Many families do not discuss future plans with their relatives who have developmental disabilities or other family members, including siblings—who are often likely to assume future caregiving roles (Bigby, 1997, 2000; Heller & Factor, 1994; Smith & Tobin, 1989). Although there is growing recognition that individuals with developmental disabilities should be active participants in planning processes, supports are often needed. Many adults with developmental disabilities have had few opportunities to make even simple daily choices in their lives, let alone supports to make major life decisions about the future (Heller, Factor, Sterns, & Sutton, 1996; Lakin, Burwell, Hayden, & Jackson, 1992).
Several later-life planning programs have been developed to provide individuals with developmental disabilities knowledge and opportunities to make choices as they age (Heller, 2000). Laughlin and Cotton (1994) developed a preretirement program that was effective in teaching individuals with disabilities about available retirement options. Isfeld and Mahon (1997) developed a person-centered planning program focused on leisure activities (Mahon & Martens, 1996). This program resulted in higher leisure and life satisfaction as well as lifestyle changes that included full or partial retirement for some older individuals with developmental disabilities (Mahon & Goatcher, 1999).
Sutton, Heller, Sterns, Factor, and Miklos (1993) developed a comprehensive person-centered, later-life planning program for individuals with developmental disabilities that included modules on residential, vocational, retirement, health promotion, and leisure options. Sutton et al. adopted person-centered planning tools and fostered peer support, including the use of self-advocates as peer facilitators of groups. The program has been empirically evaluated in the United States, the Netherlands, and Germany. Outcomes include increased knowledge of later-life options, leisure activities for individuals living with families, and choice-making by individuals with developmental disabilities (Haveman, 1998; Heller et al., 1996; Heller, Miller, Hsieh, & Sterns, 2000). Outcomes of these later-life planning programs suggest that appropriate supports and opportunities can increase the inclusion of individuals with developmental disabilities in plans concerning the future.
In the current study we synthesized existing knowledge from previous future planning and later-life planning interventions. We adopted a peer support model to develop and empirically evaluate a family future-planning intervention that includes individuals with developmental disabilities. Based on this model, our goals for the intervention were to (a) increase concrete future-planning activities taken by families, (b) impact subjective appraisals of caregivers (decrease feelings of burden and increase feelings of satisfaction and self-efficacy), and (c) increase choice-making opportunities and inclusion of individuals with developmental disabilities in the future planning.
Families were recruited from eight community service provider agencies in Illinois that served adults with developmental disabilities. One-day legal/financial training sessions were hosted. Attorneys covered the topics of government benefits, guardianship and less restrictive alternatives, and special needs trusts. Families were asked whether they would like to participate in the intervention that included five additional small-group workshops over the following 4 to 6 months. Criteria for inclusion in the study were (a) families had relatives over 18 years of age and (b) families had not completed a letter of intent (the primary focus of the intervention). At four of the sites, 8 or more families expressed interest in participating; families were randomly assigned to either the intervention or control group. At four other sites, there were insufficient numbers of volunteers, so two of the sites were randomly selected for the intervention and the other two sites served as controls. All families in both the control and intervention groups were provided with a 1-day legal/financial session. Only the intervention families received the five additional workshops.
The sample consisted of 48 families who completed both pretest and follow-up surveys, 29 families who participated in the intervention, and 19 families in the control group. Nineteen families in the intervention completed pretest surveys but declined to complete follow-up surveys. Similarly, 18 control group families completed pretest surveys but declined to complete follow-up surveys. This represents a 60.42% return rate for the intervention and a 51.35% return rate for the control group. There were no significant differences between the families who returned follow-up surveys and those who did not on any of the demographic variables listed in Table 1. Chi-square and t tests were performed to explore potential differences between the groups on demographic variables. There were no significant differences between the groups on any variables in Table 1.
Overall, for the entire sample (N = 48), the average age of primary caregivers was 63 years, with ages ranging from 44 to 85. The average age of individuals with developmental disabilities was 37, with ages ranging from 18 to 58. The majority of primary caregivers were mothers (79.2%). Fathers were identified as primary caregivers in 12.5% of families and siblings (all sisters) in 8.3%. A little over half of caregivers were married (58.3%). A little over half of the families had incomes under $40,000, and 27.9% of families had incomes under $20,000. The sample was ethnically diverse: 27.1% of families were African American and 18.8% of families were Hispanic or Asian.
Approximately 75% of the relatives with disabilities had intellectual disabilities. Level of functioning was assessed with scores on seven activities of daily living and 8 instrumental activities of daily living (Lawton, Moss, Fulcomer, & Kleban, 1982). Each activity was rated on needs for assistance: 1 (total assistance), 2 (some assistance), and 3 (no assistance). Therefore, lower scores indicate a lower level of functioning. The average score on activities of daily living was 18.65 (scale from a low of 7 to a high of 21). The average score on instrumental activities of daily living was 12.67 (scale from a low of 8 to a high of 24). This indicates a high level of assistance needed with instrumental activities of daily living, such as preparing meals, laundry, shopping, and money management. The majority of individuals with developmental disabilities (70.8%) lived at home.
A future-planning intervention based on a model of peer support was developed: The Future is Now: A Future Planning Training Curriculum for Families and Their Adult Relatives With Developmental Disabilities (DeBrine, Caldwell, Factor, & Heller, 2003). The intervention consisted of five additional workshops, following a 1-day legal/financial training session conducted by an attorney. Families and individuals with developmental disabilities helped to co-facilitate the workshops and supported each other in discussions about the future and in sharing information. Each workshop lasted approximately 2.5 hours; workshops were spaced 2 to 4 weeks apart. The first workshop served as an introduction to future planning. Families shared their stories, identified barriers to planning, discussed their dreams and nightmares about the future, and learned about the components of a letter of intent. Development of a letter of intent was the primary tangible outcome of the intervention. A letter of intent is a nonlegal document that captures critical family information and preferences for the future (Russell, Grant, Joseph, & Fee, 1993). The letter of intent was used to promote discussion about the future, help to create a vision, and develop planning goals.
The successive workshops covered various topics designed to add key pieces of information to the letter of intent. The second workshop focused on current relationships and supports of relatives with developmental disabilities. Families discussed ways to build friendships and increase community involvement. One key activity was outlining circles of support, a common person-centered planning tool (Falvey, Forest, Pearpoint, & Rosenberg, 1997). The third workshop was focused on residential and housing issues. Families learned about local residential supports and family-financed housing options. Families identified desired residential placements for their relatives with developmental disabilities. If families desired their relatives to live with other family members, they identified who this person would be. The fourth workshop was concentrated on issues of work, retirement, and leisure. Families gained awareness of employment and leisure options and identified preferences for the future. At the final session, families identified who would be the future caregiver or key succession person. Families then identified at least one future-planning goal to work on within the next 6 months.
Families were encouraged to bring their relatives with developmental disabilities to the workshops. Of the 29 families participating in the intervention, 23 brought their relatives. Six of the families felt that their relatives would not benefit from the workshops due to their level of impairment. Individuals with developmental disabilities were included in the workshops through break-out groups that accommodated their level of understanding. Caregivers and individuals with developmental disabilities met together at the beginning of each workshop to introduce the topic, split into separate groups for the bulk of the workshop content, and then reunited at the end for discussion.
The curriculum, person-centered planning for later life (Sutton et al., 1993), was modified to closely parallel topics covered by family caregivers. Pictures, videos, role-playing, and other activities were used to help communicate topics and enhance understanding. Groups for individuals with developmental disabilities also focused on choice-making and peer support to encourage self-determination. At the end of each workshop and between workshops individuals with developmental disabilities had homework assignments that were designed to foster discussion with family about their desires for the future.
Peer family and self-advocate facilitators were recruited for the project. These were families identified by participating agencies who had done some level of future planning; most often, they had completed a special needs trust. Peer family facilitators and professionals from participating agencies attended a 1-day training workshop that provided an overview of the sessions that led to the development of the curriculum. The groups for families were primarily coordinated and led by project staff who had experience in conducting training workshops. Peer families assisted through sharing their personal experiences on certain issues, such as applying for residential services or meeting with attorneys. Workshops encouraged a lot of discussion and opportunities for other families to share their experiences.
In addition to family co-facilitators, self-advocates from People First co-facilitated the groups for individuals with disabilities. Self-advocates were recruited who had some prior experience in facilitating and leading groups. Project staff met with self-advocate co-facilitators prior to the sessions to review the main goals of the session. Sections from the curriculum person-centered planning for later life were selected and modified with ideas and suggestions from self-advocates, who shared the facilitation roles with project staff during the groups. They also shared their personal experiences and encouraged others to speak up in the group about their desires for the future.
Six intervention groups were conducted between March 2000 and August 2002. Four of the interventions were conducted within the city of Chicago and 2 in the suburban areas of greater Chicago. Half of the interventions were conducted during the day and half, in the evenings. One intervention was conducted entirely in Spanish. Materials were translated into Spanish by a bilingual and bicultural student with disabilities.
In order to evaluate the intervention pretest and 1-year follow-up, we conducted surveys with primary caregivers in both the intervention and control groups. In addition to demographic information, the surveys contained the following measures.
Families were asked to indicate whether they had established a special needs trust, developed a letter of intent, and/or established legal guardianship for their relative with developmental disabilities. Special needs trusts have been identified as the primary way for families to leave money to relatives with disabilities without jeopardizing their entitlement to government disability benefits and services. On the survey, special needs trusts were differentiated from other types of trusts and leaving money directly to relatives with disabilities or other family members through a will. Families were also asked about action taken on residential planning. Action was considered taken if the family had looked into a specific residential program, placed their relative on a waiting list for a specific residential program, secured placement in a residential program, or made specific arrangements for their relative with developmental disabilities to live with other relatives.
The Caregiving Burden Scale consisted of nine statements about the effects of caring for a relative with a developmental disabilities on job opportunities, finances, future worry, personal time, social opportunities for leisure, and caregiver's marriage (Heller, Markwardt, Rowitz, & Farber, 1994). Each statement was rated from 1 (strongly disagree) to 4 (strongly agree). Alpha reliability of the scale was .83 at pretest and .86 at follow-up.
The Caregiving Satisfaction Scale consisted of five statements about satisfaction in the role of caregiver (Lawton et al., 1982). Examples of statements include “My relative shows real appreciation for what I do for him/her” and “My relative's pleasure over some little thing gives me pleasure.” Each statement was rated from 1 (strongly disagree) to 4 (strongly agree). Alpha reliability of the scale was .67 at pretest and .83 at follow-up.
The Caregiving Self-Efficacy Scale was based on Bandura's (1986) concept of self-efficacy, modified by Heller, Miller, and Hsieh (1999) to apply to families of individuals with developmental disabilities. The scale consisted of six statements; examples include “I honestly believe I have the skills necessary to be a good caregiver to my relative” and “If anyone can find the answer to what is troubling my relative, I can.” Each statement was rated from 1 (strongly disagree) to 4 (strongly agree). Alpha reliability of the scale was .82 at pretest and .73 at follow-up.
Discussion with individuals who have developmental disabilities
Caregivers were asked the extent to which they had discussed plans for the future with their relatives with developmental disabilities. This one-item measure was scored 1 (not discussed at all), 2 (discussed somewhat), and 3 (discussed a great deal).
Choice-making of individuals with developmental disabilities
The Daily Choice Inventory (Heller et al., 2000) was used to measure the degree of daily choice-making of individuals with developmental disabilities, as rated by caregivers. This scale has 12 items, on a 3-point scale rated 1 (never chooses), 2 (sometimes chooses), and 3 (chooses whenever he or she wants to). Example of daily choice-making items covered include degree to which individuals with developmental disabilities decide what to eat, how to spend money, and what to do in leisure time. Alpha reliability of the scale was .89 at pretest and .88 at follow-up.
Barriers to future planning
A list of 12 barriers to future planning was compiled from previous literature and comments from families in the project. As part of the follow-up survey, families were asked to identify which barriers applied to them.
Table 2 contains pretest and 1-year follow-up information on future-planning activities completed by families in the intervention and control groups. Chi-square tests comparing groups at pretest indicated no significant differences between groups on future-planning activities. McNemar tests were conducted to compare the numbers of families who had completed future-planning activities over time. McNemar tests indicated no significant differences over time for the control group. However, there were significant differences over time for the intervention group, with significantly more families establishing a special needs trust, p < .05, taking action on residential planning, p < .01, and developing a letter of intent, p < .01. Specifically, 6 families, or 24.0% of families who had previously not done so, established a special needs trust. Nine families, or 64.0% of families who had previously not done so, took action on residential planning. Twenty-two families, or 75.86% of families who had not done so prior to the intervention, developed a letter of intent. There were no significant differences on guardianship over time.
The t tests we used to compare groups at pretest indicated no significant differences between groups on the following outcome measures: caregiving appraisals (burden, satisfaction, and self-efficacy), discussion of plans with individuals who have developmental disabilities, and daily choice-making of individuals with developmental disabilities. Repeated measures analyses of variance were employed to compare groups over time on these measures (Table 3). There was a significant Group × Time interaction effect for caregiving burden, F(1, 46) = 8.83, p < .01. Caregiving burden decreased significantly more for the intervention group over time. There were no significant Group × Time interaction effects for caregiving satisfaction or self-efficacy nor for discussion of plans with individuals with developmental disabilities. However, discussion of plans significantly increased over time for both the intervention and control groups, p < .05. Finally, there was a significant Group × Time interaction effect for choice-making of individuals with developmental disabilities, F(1, 44) = 6.78, p < .05. Over time, the amount of choice-making for the intervention group increased significantly more than for the control group.
Two post-hoc analyses were conducted to further explore associations between demographic variables and future-planning activities and barriers identified by families. Table 4 contains a correlation matrix between demographic variables and outcomes explored in the study at Time 2. Development of a special needs trust was significantly associated with White families, families who had established guardianship, and families with relatives living outside the family home. Establishment of guardianship was significantly associated with development of a special needs trust, relatives living outside the family home, and lower caregiving burden. Taking action on residential planning was significantly associated with families with relatives outside the family home and higher caregiving burden. Having a letter of intent was significantly associated with family with higher income.
Table 5 lists the most frequent barriers to future planning identified by families at Time 2. Chi square tests comparing the frequency of barriers between groups indicated no significant differences between the intervention and control group.
The current study demonstrates the effectiveness of a family future-planning intervention based on a model of peer support. The intervention contributed to families performing important future-planning activities. These included completing a letter of intent, taking action on residential planning, and developing a special needs trust. The intervention also significantly reduced feelings of burden among caregivers and increased the daily choice-making opportunities of individuals with developmental disabilities.
Planning for the future is a complex, dynamic, and emotional process for families with relatives who have developmental disabilities. Although the need to support families with future planning is well-documented, the most effective ways to do so are unclear (Heller, 2000). The current study is one of the first to document the effectiveness of a peer support model. Families face a number of barriers to planning for the future. The most frequently reported barriers in the present study included such issues as trusting professionals, emotional struggles with the service system, and contemplating one's own mortality. Trust of professionals and the service system may be even more of an issue for the current cohort of aging caregivers who have historically not received appropriate supports (Fullmer, Smith, & Tobin, 1997). Furthermore, many professionals continue to blame older caregivers for not fostering independence of individuals with disabilities and for not making plans for the future (McCallion & Tobin, 1995). Therefore, a peer support intervention, allowing family caregivers and individuals with developmental disabilities to share information and support one another, could be particularly helpful in fostering planning.
Planning for the future is not a simple act occurring at one point in time but is, rather, an ongoing process (Bigby, 2000; Smith, Fullmer, & Tobin, 1994). A central feature of the current intervention was the development of a letter of intent. Each of the five workshops in the current intervention incrementally led families to develop a letter of intent. The logic was that taking the first step and developing a vision for the future would lead families to develop goals and take further action on planning. Perhaps not surprisingly, the intervention did significantly contribute to families completing a letter of intent. Moreover, the intervention also significantly contributed to families taking action on residential planning and developing a special needs trust.
Residential planning is one of the most emotional aspects of preparing for the future. Residential planning forces caregivers to think about their own mortality as well as the lack of appropriate options for formal residential services. Of families in the intervention that took action on residential planning at follow-up, 47.8% talked with or made specific arrangements for their relative with disabilities to live with other relatives. The remaining 52.2% looked into specific residential programs, placed their relative on a waiting list, or secured residential placement. The almost even split between desires for formal and informal future residential situations found in the current study is consistent with previous findings (Heller & Factor, 1991).
In addition to taking action on residential planning, the intervention significantly contributed to families developing a special needs trust. Although the development of a special needs trust may not be as pressing for lower income families, many attorneys stress that even limited inheritance or money from life insurance can be better secured through special needs trusts.
In the present study, development of such a trust was not significantly associated with family household income. Legal and financial planning can be one of the most complex and intimidating aspects of future planning. While both the intervention and control group were provided with legal and financial training sessions, families in the intervention were provided with opportunities to interact with other families who had previously gone through the process. They shared their questions, advice, and real-life experiences with each other, perhaps making the process a little less overwhelming. Families also shared information with one another concerning guardianship, asking many questions concerning the need for guardianship, different types of guardianship, less restrictive alternatives, and successor guardianship. The intervention did not significantly contribute to families establishing guardianship or powers of attorney; however, this is not that surprising given that needs for guardianship and alternatives vary considerably from family to family.
Compared with the control group, the intervention significantly contributed to reduced feelings of caregiver burden. Other appraisals, caregiving satisfaction, and caregiving self-efficacy were not significantly affected by the intervention. One explanation for this is that caregivers often simultaneously express both positive and negative appraisals of their caregiving role (Lawton, Moss, Kleban, Glicksman, & Rovine, 1991).
Although there are conflicting theories concerning whether burden increases or decreases across the life cycle (Heller, 1998), the need to plan for the future care of relatives with developmental disabilities is a source of great anxiety for older caregivers—a sense of “unfinished business” (Smith & Tobin, 1989; Smith, Tobin, & Fullmer, 1995). The need for information on future planning is among the highest unmet needs reported by older caregivers, and decreasing unmet needs is associated with decreased caregiving burden (Heller & Factor, 1991). Therefore, assisting families to achieve concrete future planning outcomes—completion of a letter of intent, action on residential planning, and development of a special needs trust—likely contributed to reduced burden.
An additional factor likely responsible for reduced feelings of burden was interaction with other families facing similar worries and concerns about the future. Participation in psychoeducational support groups has been associated with lower feelings of caregiving burden among caregivers of relatives with mental illness (Cook, Heller, & Pickett-Schenk, 1999; Greenberg, Seltzer, Krauss, & Kim, 1997). Families with relatives with developmental disabilities report desires to participate in support groups (Heller & Factor, 1991), but seem to have fewer opportunities to engage in such groups (Greenberg et al., 1997). Furthermore, older families are less likely to be connected to the formal service system (Smith, 1997), perhaps contributing to even fewer opportunities to interact with other aging caregivers. The intervention created a supportive environment to share stories, dreams and nightmares for the future, emotions, and planning strategies. Families realized they were not alone. Illustrating a sense of community, one group of families was empowered to lead additional future-planning workshops with other families within their agency.
A unique aspect of the intervention was the inclusion of individuals with developmental disabilities in the planning process. Although these individuals rarely attended the legal/financial planning sessions, the training contributed to caregivers in both the intervention and control group by increasing their discussion of plans with their relatives with disabilities. It is possible that the one-item measure of discussion of plans was not sensitive enough to pick up differences between groups. The majority of families who participated in the intervention brought their relatives to the additional future-planning workshops. Individuals with disabilities participated in simultaneous workshops, which were co-facilitated by self-advocates and adapted to their level of understanding. These sessions provided opportunities for individuals with developmental disabilities to make choices and voice their desires for the future. Individuals were encouraged to share desires for the future with caregivers at the end and in between workshops. Compared with the control group, daily choice-making of individuals with developmental disabilities in the intervention significantly increased over time.
The opportunity to make choices in life is an essential component of self-determination of individuals with developmental disabilities (Wehmeyer, 1996). Self-determination has been associated with higher quality of life (Wehmeyer & Schwartz, 1998) as well as successful transitions from school to adult life (Wehmeyer & Schwartz, 1997). Individuals with developmental disabilities face major life transitions following primary caregivers passing away or becoming unable to continue providing care. However, often overlooked in the future-planning literature, individuals with developmental disabilities enter another phase of their lives, likely surviving their parents by upwards of 30 to 40 years (Bigby, 2000). Similar to all of us as we age, this phase of later life can be full of new and rewarding opportunities for personal growth. Throughout the lifespan, individuals with developmental disabilities need opportunities to build skills and appropriate supports to enhance their self-determination. An exciting and unexpected outcome of the intervention was that one group of individuals with disabilities decided to continue meeting following the completion of the five workshops. With the assistance from People First of Illinois, this group organized itself into a new state self-advocacy chapter.
One limitation of the current study, however, was that perspectives of individuals with developmental disabilities were not directly studied. Caregivers instead of individuals with disabilities rated the degree of choice-making. Attempts were made to gather the input of individuals with developmental disabilities through pretest and follow-up interviews, but reliable information was gathered on too few individuals to allow for statistical comparisons. Future researchers could use a combination of qualitative and quantitative methods to better gain the perspectives of individuals with developmental disabilities about the topic of future planning and the impact of future-planning interventions.
Another limitation of the current study is potential sampling bias, particularly with regard to the recruitment of the control group. Initially, individuals were randomly assigned to the intervention and control groups. However, due to difficulty recruiting a large enough number of families from within the same agency, different agencies were randomly selected for either participation in the intervention or control. Although no significant demographic differences between groups were found, there may be other confounding factors associated with different local areas served by agencies. Motivation may also be a confounding factor. Individuals who signed up to participate in the intervention (whether they ended up as intervention or control families) may differ from other families. Unfortunately, no data were available on families who attended the legal/financial workshops but did not want to participate in the intervention.
In addition, we found that some families in the control group were more likely to have initially completed some level of future planning than those in the intervention group. Hence, we excluded 8 families from the control group who had already completed a letter of intent because this was the primary purpose of the intervention, and none of the intervention group had completed a letter of intent at baseline. In future research, investigators could employ a time-lag design to reduce biases while ensuring that all families eventually receive potential benefits of training. Although this intervention seemed to result in decreased caregiver burden and increased choice-making of individuals with disabilities, the magnitude of these changes were relative small. Furthermore, a number of tests were run on the same data, and no correction was made to account for family-wise alpha. Due to the small sample size, replication of this pilot study is needed with additional families as well as comparison of this intervention with other strategies and interventions.
Families with relatives living at home may be the most important target of future interventions. These families are less likely to have developed special needs trusts, guardianship, or residential plans. Although future planning may be a more pressing need for older caregivers, age was not significantly associated with any future-planning activities. Such interventions would likely benefit both younger and older families. In future intervention research, investigators should also make greater efforts to include other family members in the planning process, particularly siblings. Many parents do not explicitly discuss future plans with siblings of individuals with developmental disabilities. Yet, siblings are most likely to assume caregiving responsibilities when parents are no longer able to do so (Bigby, 1997, 2000; Orsmond & Seltzer, 2000). Siblings are an important source of affective support for individuals with developmental disabilities across the lifespan; many siblings expect to assume primary caregiving responsibilities, oversight, and advocacy roles in later life (Griffiths & Unger, 1994; Krauss, Seltzer, Gordon, & Friedman, 1996; Pruchno, Patrick, & Burant, 1996; Seltzer, Begun, Seltzer, & Krauss, 1991). Furthermore, although many aging caregivers do not wish to prematurely transfer care to siblings, increased involvement of siblings has been associated with decreased feelings of burden and increased psychological well-being of caregivers (Pruchno et al., 1996; Seltzer et al., 1991).
Finally, future researchers should continue to highlight the social, political, and economic aspects of disability that cause barriers to family future planning. Many aging families are unknown to the formal developmental disability and aging service systems. Funding allocated for family support accounts for less than 4% of all funding within the developmental disabilities service system (Parish, Pomeranz-Essley, & Braddock, 2003). Thousands of families and individuals with developmental disabilities continue to wait for residential services that are seldom provided while the family is available to provide care (Prouty et al., 2003). Without special needs trusts established by knowledgeable attorneys, at the expense of families, it is difficult for families to financially secure the future of their relatives with disabilities while maintaining eligibility for disability benefits and programs. These are all systemic issues, layered with ideological values regarding disability, ripe for further exploration.
In summary, results of the current study suggest that a future-planning intervention based on peer support can be one effective way to assist aging caregivers and individuals with developmental disabilities in planning for the future. It can contribute to families taking concrete planning actions, reduce feelings of caregiving burden, and increase choice-making opportunities of individuals with developmental disabilities. In recent years, community service provider agencies have witnessed changing demographics, the growth of aging caregivers providing care to relatives with disabilities that will continue to rise in coming decades. The current study provides guidance through an effective model to support aging caregivers and adults with developmental disabilities in planning for the future.
Support for this project was provided by the Rehabilitation Research and Training Center, funded through the National Institute on Disability and Rehabilitation Research (Grants H133B980046 and H133B031134). Additional support was provided through the Illinois Planning Council (Grant 9838/2005) and the Illinois Department on Aging and the Administration on Aging (Grants CSP031223 and 90CG2535, respectively). We thank the following organizations for their collaboration on this project: Chicago Arc, Clearbrook, El Valor, Ray Graham Association, Habilitative Systems, SRCA, Arc of Illinois, People First of Illinois, and the Illinois Department on Aging. We also thank the following individuals who made this project possible: Theresa Varnet, Brian Rubin, Mary Anne Ehlhert, Susan MacMahon, Donna Ennis, Lisa Eden, Elizabeth DeBrine, Alan Factor, Erick Lopez, Tia Nelis, David Wricks, and Lita Spak.
Authors: Tamar Heller, PhD (email@example.com), Director, Rehabilitation Research and Training Center on Aging With Developmental Disabilities, and Professor and Head, Department of Disability and Human Development, Joe Caldwell, PhD, Visiting Senior Research Specialist, Rehabilitation Research and Training, Center on Aging with Developmental Disabilities, Department of Disability and Human Development, University of Illinois at Chicago, 1640 W. Roosevelt Rd.. Chicago, IL 60608-6904