Although individuals with intellectual and developmental disabilities (IDD) are living longer lives, fewer than half of parents of individuals with IDD conduct future planning. The correlates and barriers to future planning must be identified to develop targeted interventions to facilitate future planning. In this study, 388 parents of individuals with IDD responded to a national, web-based survey. Participants who were older, more educated, attended more parent training and support activities, and had children with fewer functional abilities, were more likely to engage in future planning. Reported barriers to future planning included: (a) lack of available services, (b) financial challenges, (c) reluctance of family members, (d) lack of time, (e) the emotional nature of future planning, (f) inertia, and (g) a lack of family members to be caregivers. Implications for policy, practice, and future research are discussed.
As individuals with intellectual and developmental disabilities (IDD) live longer lives, they are increasingly outliving their parents (Fujiura, 2014). Thus, it is crucial that parents conduct future planning for their offspring with IDD. Although many families want to engage in future planning, families often treat future planning as more aspirational than definitive (Bowey & McGlaughlin, 2007). Parents often do not create actual plans; however, when parents create plans, their wishes for their offspring are more likely to be fulfilled (Freedman, Krauss, & Seltzer, 1997). For the purpose of this study, our definition of future planning is to conduct a set of activities to ensure supports are available for individuals with IDD in the future.
Unfortunately, less than half of parents of adults with IDD have engaged in future planning (Davys, Mitchell, & Haigh, 2010; Freedman et al., 1997; Heller & Factor, 1993). The lack of future planning has negative implications for individuals with IDD and their families. Without future planning, adults with IDD are more likely to face inappropriate placements (Thompson & Wright, 2001) and crisis situations (Hewitt, Agosta, Heller, Williams, & Reinke, 2013). For families, the lack of future planning can be anxiety-inducing (Smith, Tobin, & Fullmer, 1995). To develop effective supports for future planning, it is necessary to identify parents who are likely not to engage in future planning and to determine the barriers to future planning. The purpose of this study was to identify the correlates and barriers to future planning among parents of individuals with IDD.
Parent characteristics may correlate with future planning. Heller and Factor (1991) interviewed 100 parents of individuals with IDD to identify the correlates of financial and residential planning. Caregivers who had greater family incomes, were older, and were White, were more likely to conduct financial and residential planning. Other studies have also noted that older caregivers of individuals with IDD are more interested in future planning (e.g., Smith, Majeski, & McClenny, 1996). However, agencies encourage families to engage in future planning earlier rather than later (e.g., The Arc of the United States, 2017). The number of children a parent has may also relate to future planning. In a study of 340 mothers of adults with IDD, Freedman et al. (1997) found that mothers who made long-term plans for their offspring with IDD were less likely to have other children without disabilities. Thus, future planning may seem less necessary when parents have more children without disabilities.
A less examined correlate of future planning may be parent knowledge about services and access to peer support. Given that future planning involves navigating complex service systems (Heller & Caldwell, 2006), parents with higher levels of education may be more likely to conduct future planning. Additionally, some studies have identified that lack of access to information and support may occlude future planning. In a study with nineteen parents of adults with IDD, participants reported that information about future planning and support groups may facilitate future planning (Taggert, Truesdale-Kennedy, Ryan, & McConkey, 2012). Thus, when parents participate in training and support activities, they may be more likely to conduct future planning.
Characteristics of individuals with IDD may also relate to future planning. For example, families of individuals with greater maladaptive behaviors are more likely to seek outside placement for their children (Heller & Factor, 1991). Because residential placement takes time and service coordination, parents of individuals with maladaptive behaviors may be more likely to engage in future planning. Similarly, individuals with fewer functional abilities may have parents who are more likely to pursue future planning to ensure a seamless transition of care.
In addition to identifying the correlates of future planning, it is also necessary to identify the barriers. Previous research has suggested two main barriers to future planning: (1) the emotionally loaded nature of future planning (Gilbert, Lankshear, & Peterson, 2008; Heller & Factor, 1993; McConkey, 2005; Prosser, 1997; Taggert et al., 2012) and (2) the lack of extant services (Gilbert et al., 2008; Heller & Factor, 1993; Prosser, 1997; Taggert et al., 2012). Regarding the former, parents of individuals with IDD may feel obligated to continue providing care (in spite of their own declining health) as parents report that only they can provide high-quality care to their offspring (Bigby, 2004). Regarding services, especially in the United States, where 43 states have waiting lists for home- and community-based services (Research and Training Center on Community Living, 2013), parents may struggle with future planning due to the lack of services. Notably, prior future planning studies that have identified barriers have (for the most part) been based on small samples of parents of individuals with IDD. None of the studies have included national samples, making it difficult to make more global inferences.
Although some previous studies have explored the correlates and barriers of future planning, the results have been mixed. Furthermore, few studies have tried to identify malleable correlates (e.g., parent participation in training or support activities) of future planning. By identifying the correlates and barriers to future planning with a national sample, interventions can be developed to target parents who are likely to not engage in future planning as well as to remove barriers to future planning. To this end, our research questions were: (1) What are the correlates of future planning among parents of individuals with IDD? and (2) What barriers do families report in relation to future planning?
Participants in this study were part of a larger study to examine adult siblings of individuals with IDD. The larger study included a variety of stakeholders: parents of individuals with IDD, adult siblings of individuals with IDD, adults with IDD, and professionals who work with individuals with IDD. For this study, the sample was restricted to parents of individuals with IDD. Notably, the sample of this study reflects the larger sample.
To have a diverse and national sample of parents of individuals with IDD, participants were recruited in a variety of ways. E-mails and recruitment flyers were disseminated to local, state, and national disability agencies throughout the United States. Agencies included chapters of The Arc, the University Centers for Excellence in Developmental Disabilities, the Protection and Advocacy Agencies, the Centers for Independent Living, the Sibling Leadership Network and state sibling chapters. Additionally, social media (e.g., Facebook), hard copy mailings, and listservs were used to distribute information about the study. Multiple recruitment e-mails were sent. Given the recruitment method, this study relied on a convenience sample. There was no financial incentive to participate in the survey; however, participants could have elected to receive the results of the survey.
In this study, 388 parents of individuals with IDD completed a web-based survey. On average, participants were 53.50 years of age (SD = 10.47, ranging from 40 to 83). The majority of participants (90.98% or n = 353) were mothers of individuals with IDD. Most participants were highly educated, having completed college (70.10% or n = 272). The majority of participants were White and married (85.05% or n = 330 and 76.80% or n = 298, respectively). Participants represented 45 states as well as Washington, D.C. (excluded states were: Idaho, Mississippi, Wyoming, Montana, and New Mexico).
The individuals with IDD were, on average, 24.69 years of age (SD = 9.03, the range was from 3 to 68) with the majority of individuals (87.63% or n = 346) over 18 years of age. Notably, parents of offspring younger than 18 years of age (i.e., 12.37% of the sample) were included in this study as future planning should begin during childhood (Davis, 2003). Most (65.46% or n = 254) of the individuals with IDD were male. The majority (75.26% or n = 292) of individuals with IDD lived with their parents. Regarding the remainder, 17.01% (n = 66) lived independently with supports, 5.93% (n = 23) lived in a group home, and 1.8% (n = 7) lived in another family member's home. The most common types of disabilities included: intellectual disability (51.55% or n = 200) and autism spectrum disorder (37.37% or n = 145). See Table 1.
In collaboration with professionals and adults with IDD and their families, the survey was developed and revised. The survey was developed based on extant research about families of individuals with IDD (e.g., Fujiura, 2014) and future planning (e.g., Heller & Caldwell, 2006). Before launching the survey, we piloted the survey with five parents of individuals with different types of disabilities. After piloting, the survey was revised. Also, we received University Institutional Review Board approval. The survey was put onto a secure survey platform, Qualtrics. Responses were downloaded periodically to guard against computer malfunctions. The study was available from January 2015 to April 2015. All of the surveys were completed electronically; however, participants were given the option of completing a paper and pencil version of the survey. The survey took 25–30 minutes to complete.
Dependent variable: Future planning scale
The Future Planning Scale includes eleven items related to long-term planning for the individual with IDD (Heller & Caldwell, 2006). Participants were asked whether they completed each future planning activity. Each item had two potential responses: (0) no or (1) yes. In a previous study of parents of individuals with developmental disabilities, the Kuder-Richardson coefficient was .91 (Burke & Heller, 2016). Using the sum of the eleven items, the Kuder-Richardson coefficient was .82.
Independent variable: Maladaptive behavior of the individual with IDD
We used the Scales of Independent Behavior-Revised (SIB-R, Bruininks, Woodcock, Weatherman, & Hill, 1986) which provides a General Maladaptive Index (GMI, summed variable). The GMI includes internalizing, asocial, and externalizing behaviors as well as reflects the frequency and severity of the behavior. Previous studies indicated high reliability (Cronbach's alpha = .75, Burke & Hodapp, 2014). For this sample, Cronbach's alpha = .90.
Independent variable: Functional abilities of the individual with IDD
Using the Activities of Daily Living Index (ADL, Lawton, Moss, Fulcomer, & Kleban, 1982), participants were asked about fifteen different types of functional abilities of their offspring with IDD. For each item, there were three potential responses: (1) without help, (2) with some help, and (3) with total help. In a previous study of parents of adults with IDD, the ADL scale had high reliability (Cronbach's alpha = .94, Burke & Heller, 2016). In the present study, the ADL scale also had high reliability (Cronbach's alpha = .95).
Independent variable: Parent participation in training and support activities
We created an eight-item scale to gauge the reception of training and supports by the parent. The training and supports were based on previous research about the information and support needs of parents of adults with IDD (e.g., Balcazar, Keys, Bertram, & Rizzo, 1996; Heller & Caldwell, 2006). The items asked whether the parent participated in the following training and support activities: (a) in-person support group, (b) leadership skill training, (c) online support group, (d) caregiving training, (e) caregiving materials, (f) mentoring from another parent, (g) training about adult services, or (h) a workshop about person-centered planning. Potential responses were dichotomous: (1) = no and (2) = yes. In this study, the Kuder-Richardson coefficient was .79.
Independent variable: Family size
Participants were asked a one-item question: “How many children do you have?” Responses could range from one child to more than 13 adult children.
Independent variable: Parent age
Participants were asked: “In what year were you born?” Responses were then recorded into years of age.
Independent variable: Parent educational background
Participants were asked about the extent of their formal educational background. Responses included: (a) some high school, (b) high school graduate, (c) some college, (d) college graduate, (e) some graduate school, and (f) graduate school degree. Because of the few participants who only completed some high school, we combined the “some high school” and “high school graduate” categories for the analyses.
Independent variable: Barriers to future planning
Participants were asked “Which of the following barriers have you or your family experienced in relation to future planning?” The barriers included: “lack of information,” “financial barriers,” and “my family refused to engage in future planning.” Participants were also given an option to write in the barriers they or their families faced in regard to future planning.
Research question one
First, we conducted descriptive statistics for the independent and dependent variables. Specifically, we examined the frequencies, means and standard deviations, and distributions of the variables. Then, missing values—which accounted for less than 5% of items in a given scale—were imputed with mean scores substituted for missing values (Harrell, 2001). We then conducted univariate analyses (e.g., ANOVAs and Pearson correlations). For post hoc analyses for the ANOVA, least significant difference (LSD) analyses were conducted. To calculate effect sizes (ES), we used Cohen's d (Tabachnick & Fidell, 2007). For comparison purposes, we converted the correlation coefficients into Cohen's d for ES (Dunst, Hamby, & Trivette, 2004; Friedman, 1968). We calculated the Variable Inflation Factor and Pearson's correlations to identify multicollinearity among the independent variables. The Variable Inflation Factor for each independent variable was below 2.5; the Pearson correlations between the independent variables were below .34. Thus, we found no multicollinearity. As such, all independent variables were included in the linear regression.
Research question two
We conducted a frequency count for the close-ended and open-ended responses about barriers to future planning. Regarding the open-ended responses, we used content analysis. Specifically, the first author and a research assistant independently coded all responses (Creswell, 2013). Each open-ended response only had one code (i.e., most participants did not write multiple ideas within an open-ended response). The first author and research assistant compared codes; they agreed on the codes by consensus. They organized the codes into categories and grouped the categories into themes. For example, for the theme “lack of available services,” initial codes included, “unavailable services,” “lack of services,” “no appropriate services,” and “no available residential services.” The categories included “no services” and “lack of appropriate services.”
Prevalence of Conducting Future Planning
On average, participants reported engaging in 5.49 future planning activities (SD = 3.11, the range was from 0-11). Many participants (31.8% or n = 123) reported engaging in 5-7 future planning activities. Only 12.4% (n = 48) of participants reported engaging in no future planning activities; conversely, 3.6% (n = 14) of participants reported engaging in all 11 future planning activities. The most commonly reported future planning activities included: (a) located an attorney knowledgeable about disability issues (57.7% or n = 224), (b) discussed future plans for your child with a disability with the entire family (53.6% or n = 208), and (c) discussed future plans with your child with a disability (53.1% or n = 206). The least frequent future planning activities included: (a) made residential plans for your child with a disability (26.8% or n = 104), created a letter of intent (26.3% or n = 102), and (b) taken proactive steps toward securing a residential placement for your child with a disability (23.5% or n = 91). See Table 2 for the frequencies of each future planning activity.
Correlates of Future Planning
As shown in Table 3, when older parents participated in training and support activities, and their offspring had fewer functional abilities, parents were more likely to report engaging in future planning activities (ps < .001, ESs ranged from .35 to .72, respectively). Further, parent educational background related to future planning activities. Specifically, parents who attended graduate school (versus parents who were college graduates, attended some college, were high school graduates, or attended some high school) were more likely to report engaging in future planning activities.
Explaining 26.8% of the variance, the regression model was significant (F = 18.83, p < .001). Compared to the univariate analyses, the same correlates were significant in the linear regression. Specifically, fewer functional abilities of the individual with IDD, greater parent participation in training and support activities, more educated parents, and older parents, were more likely to engage in future planning activities. Maladaptive behavior and family size were not significant. See Table 4.
Barriers to Future Planning
Participants reported many barriers to future planning. Nearly half (46.6% or n = 181) of the participants reported financial barriers; while 39.4% (n = 153) of the participants reported lack of information as a barrier to future planning. Few (3.9% or n = 15) of the participants reported that their families refused to engage in future planning. Regarding open-ended responses, 104 participants provided write-in responses regarding barriers to future planning. The majority (61.54% or n = 64) of participants reported that lack of services was a barrier to future planning. Specifically, participants reported a lack of appropriate residential, employment, and recreational supports for individuals with IDD. Put simply, one participant wrote “little is available that is appropriate.”
To a lesser extent, there were other reported barriers to future planning. Of the participants, 12.5% (n = 13) reported that certain family members were barriers to future planning. For example, six participants reported that the individual with IDD refused to engage in future planning. An additional five participants reported that siblings were barriers, as the siblings refused to engage in future planning. Finally, two participants reported that they and their spouses (e.g., the mother and father of the individual with IDD) could not agree about future planning supports; as a result, these participants could not engage in future planning.
Additionally, 9.62% (n = 10) of participants reported that “time” was a barrier. For some participants, the lack of time to engage in future planning was a barrier; other participants reported that it was not the right “time” to engage in future planning due to the age of the child. Also, 7.69% (n = 8) reported that they did not engage in future planning because the process was too “emotionally loaded.” Specifically, these participants reported not engaging in future planning because it was “anxiety inducing,” “difficult,” “stressful,” and “hard to talk about.” An additional 4.81% (n = 5) of participants reported that “inertia” was a barrier to future planning. Specifically, one participant reported “my own lack of initiative to write a letter of intent and to find appropriate situations in the event that I die” as a barrier to future planning. Finally, 3.85% (n = 4) participants reported that they did not engage in future planning because there were no family members to succeed as the future caregiver for their offspring with IDD.
In this study, we identified the correlates and barriers of future planning. We had five main findings. First, consistent with previous research (Davys et al., 2010; Freedman et al., 1997; Heller & Factor, 1993), many parents did not engage in future planning. More than half of the participants reported engaging in only three future planning activities. Notably, each of these activities (i.e., locating an attorney, discussing future plans with your child and your family) were aspirational future planning activities. Indeed, the activities that required decision-making actions (e.g., establishing guardianship, writing a letter of intent) were much less prevalent. To this end, it seems that families are comfortable with aspirational future planning, but perhaps uncomfortable, with making tangible future planning decisions.
Second, parents who were more formally educated and more aware of and connected with disability training and support, were more likely to engage in future planning. As noted in previous studies, lack of awareness about future planning was often reported as a barrier (Taggert et al., 2012). Similar to studies about siblings of individuals with IDD (Heller & Kramer, 2009), this study extends the literature by confirming that education (both formal and informal via training and support activities) relates to increased future planning. This finding is especially relevant in thinking about developing interventions to increase future planning. Specifically, interventions which focus on increasing knowledge about future planning and peer support may be especially valuable to families.
Notably, such trainings should consider targeting families with less formal education and/or lower household incomes, as these families are less likely to conduct future planning. Trainings must be accessible to families with diverse educational backgrounds. Additionally, in this study, many families reported financial barriers to future planning. For example, with respect to income, many families of individuals with IDD are from low-income backgrounds (Emerson, 2007). As such, future planning trainings could be offered via videoconferencing so parents with financial hardships can avoid the cost of transportation to attend trainings. Further, such interventions should include information about low-cost ways to conduct future planning.
Third, consistent with previous studies (e.g., Heller & Factor, 1991; Smith et al., 1996), when parents were older, they were more likely to engage in future planning. However, it is crucial to begin future planning as early as possible to avoid crisis situations and inappropriate placements (Hewitt et al., 2013 and Thompson & Wright, 2001, respectively) and to reduce the anxiety of parents and siblings (Smith et al., 1995). Indeed, the Center for Future Planning of The Arc notes that future planning should occur throughout all stages of life, especially before a parent is no longer able to provide support. Thus, it seems that interventions are necessary to facilitate future planning among younger parents.
Fourth, parents of children with fewer functional abilities were more likely to engage in future planning. Notably, previous research was mixed about the effect of the nature of an individual's disability on future planning (e.g., Heller & Factor, 1991; Prosser, 1997). Given that individuals with fewer abilities may require more services and, relatedly, service coordination, it is necessary that these families engage in future planning.
Finally, this study highlighted several barriers to future planning. The most prevalent barrier was the lack of available services for individuals with IDD. Although previous research has highlighted the lack of services as a barrier to future planning (Gilbert et al., 2008; Heller & Factor, 1993; Prosser, 1997; Taggert et al., 2012), this finding is especially pertinent when thinking about future planning interventions. To date, some future planning interventions have relied on peer support models and focused on parents as the recipients of the intervention (e.g., Heller & Caldwell, 2006). Other future planning interventions have relied on person-centered planning and focused on adults with IDD as the recipients (e.g., Sutton, Heller, Sterns, Factor, & Miklos, 1993). However, the fragmented service delivery system has consistently been named as a barrier to future planning, and yet, no future planning interventions have addressed the need to fix such systemic barriers. Existing interventions seem to be ignoring a critical barrier to future planning: the lack of services.
The results of this study seem to suggest that parents question why they should conduct future planning when there are no services for which to plan. To this end, future planning interventions may need to include ways to forge systemic change in service delivery systems. Such interventions could be related to civic engagement or advocacy (Burke & Heller, 2016). Existing interventions (e.g., Future is Now, Heller & Caldwell, 2006) should remain available but may benefit from a component about legislative or systemic advocacy to change the service delivery system. Notably, regardless of whether services are available, parents need to make some kind of plan for their offspring. Such plans may emphasize informal supports (e.g., relationships, community resources; Community of Practice, 2016).
Implications for Practice and Policy
Although future planning is important for individual, parent, and sibling outcomes, few policies offer supports for parents to access future planning services. For example, The Older Americans Act legislated Aging and Disability Resource Centers (ADRCs). The purpose of ADRCs is to help families navigate service delivery systems. However, the ADRCs do not provide future planning services. Policymakers should consider increasing the scope of ADRCs to provide information, guidance, and support about future planning for families of individuals with disabilities. Specifically, future planning supports need to be targeted to younger, low-income, and less educated families.
Practitioners should consider ensuring access to parent peer support programs especially among families of adults with IDD. Parent peer support programs have been demonstrated to have positive effects on parents' well-being (e.g., Solomon, Pistrang, & Barker, 2001). However, in adulthood, peer support for parents of individuals with disabilities seems to drop off, leaving parents feeling isolated (Taylor, Hodapp, Burke, Waitz-Kudla, & Rabideau, 2017). By having practitioners connect families with other families, there may be an increased opportunity for discussions about future planning. Further, when parents engage in future planning, providers are able to provide more cost-efficient services and be aware of families who may need services (Janicki et al., 1998). Thus, it is in the best interest of both families and practitioners that future planning is facilitated.
Directions for Future Research
Because this is a cross-sectional study (i.e., data were collected from a sample at only one time point, Bynner, 2006), direction of causality cannot be determined; it would be helpful to conduct a longitudinal study about future planning. By conducting a longitudinal study, we could better identify the predictors of future planning but also determine when parents start thinking about future planning and begin to engage in future planning activities. Future planning is a complex and dynamic process (Heller & Caldwell, 2006). Because of its nature, future planning cannot occur in just one sitting. Instead, it must take place and change over time. As such, a longitudinal study is necessary to better understand the phenomenon of future planning.
In addition to longitudinal research, it is also necessary to conduct intervention research about future planning. Indeed, this study confirms that half of families do not engage in action-based future planning (Davys et al., 2010; Freedman, Krauss, & Seltzer, 1997; Heller & Factor, 1993). There have been few future planning interventions specifically for parents of individuals with IDD (e.g., Heller & Caldwell, 2006). However, such intervention studies have largely relied on convenience samples of parents who are connected to service delivery programs. From this study, it seems that it is necessary to target future planning programs for parents who are less educated as well as less likely to be connected to parent training activities and support. Thus, instead of relying on service providers to recruit parents to participate in future planning programs, intervention research should target families of adults with IDD in other ways (e.g., community programs or events).
This study has some limitations. First, perhaps because this was a web-based study, the sample was primarily White and highly educated. Future research should attempt to recruit more diverse samples. For example, more personalized recruitment efforts may have led to a more diverse sample (Magaña, 2000). Additionally, the response rate to this study is unknown. The primarily web-based recruitment methods may have led to a sample that overrepresented parents with access to the internet and underrepresented participants with limited resources, including lack of internet access. Further, given that this study was geared to examine adult siblings, there may have been some impact on the type of survey respondents. Second, this study was cross-sectional so causality cannot be assumed. Also, the variables in this study explained almost 30% of the variance in future planning; future research needs to identify the remaining factors explaining the likelihood of future planning.
Despite these limitations, this study offers important findings confirming previous research about future planning as well as identifying malleable factors (e.g., functional abilities and parent participation in trainings) which relate to future planning. Specifically, parent participation in training and support activities is one way to intervene to increase future planning. By identifying correlates of future planning, more targeted interventions can be developed to ensure that individuals with IDD have seamless transitions in the future, family members can feel less anxious about the future, and service providers can be aware and able to meet the needs of individuals with IDD.
Funding for this study was provided by the Pennsylvania Developmental Disabilities Council and the North Carolina Developmental Disabilities Council. However, the manuscript solely reflects the opinions of the authors and not the funding agencies.
The authors would like to thank Dr. Marisa Fisher for her friendly review of this manuscript.