Abstract

Parents often provide the bulk of caregiving supports for their adult offspring with intellectual and developmental disabilities (IDD). Given the longer lives of people with IDD, however, such caregiving roles may transition to siblings. Thus, it is critical to conduct future planning among family members (e.g., parents, siblings) to prepare for the transition of caregiving roles. To this end, we interviewed 10 parent-sibling dyads (N = 20) of people with IDD about long-term planning. Both parents and siblings reported family-related and systemic barriers to developing future plans. Siblings (unlike parents) reported wanting more communication among family members about planning. Implications for future research and practice are discussed.

As people with intellectual and developmental disabilities (IDD) are living longer (National Center for Family Support, 2000), they may not only need disability-related supports but also services related to aging adults. However, because of the inadequacy of most adult service delivery systems (Prouty, Smith, & Lakin, 2003), families often provide such supports. Indeed, approximately 75% of adults with IDD live at home with family caregivers; 25% of these family caregivers are over 60 years of age (Braddock et al., 2013). Furthermore, 75% of individuals with IDD do not receive formal services as 41 states have waiting lists for adult services (Larson, Salmi, Smith, Anderson, & Hewitt, 2013) and waiting lists are often lengthy, lasting decades (Prouty et al., 2003). Considering the support needs of people with IDD and limited services, families may confront greater challenges in terms of caring for aging people with IDD.

Perhaps in response to the inadequate adult service delivery system, siblings are likely to fulfill caregiving roles for their brothers and sisters with IDD when their parents can no longer provide caregiving (Burke, Taylor, Urbano, & Hodapp, 2012; Heller & Kramer, 2009). Despite their willingness to provide caregiving, siblings often report feeling anxious about their impending roles including feeling uncertain about the future and struggling to navigate the adult service delivery system (Burke, Fish, & Lawton, 2015). It is therefore, critical to conduct planning to prepare for the transition of caregiving roles. Future planning refers to developing long-term plans for a family member with IDD with respect to financial, legal, residential, vocational, recreational, and general lifestyle choices (Heller & Caldwell, 2006). Although future planning should include every family member, it has a person-centered focus on the person with IDD. Despite its importance, less than half of families of adults with IDD have conducted future planning (Burke, Arnold, & Owen, 2018; Freedman, Krauss, & Seltzer, 1997; Heller & Factor, 1993). With little research about long-term planning among family members and the potential for siblings to assume caregiving roles, it seems crucial to understand future planning among parent-sibling dyads. To this end, the purpose of this study was to explore parent and sibling perceptions toward future planning.

Current State of Future Planning

Previous studies have identified limited family engagement in future planning (Burke et al., 2018; Freedman et al., 1997; Heller & Factor, 1993). For example, Burke et al. (2018) found that most families have conducted few long-term planning activities. Of the activities conducted, most were “aspirational” (e.g., discussing future planning with family members) rather than definitive activities (e.g., establishing a special needs trust). Although aspirational activities are helpful, definitive activities seem necessary to ensure a seamless transition of caregiving roles. Notably, Burke's study only focused on parents of adults with IDD. It is unclear whether there is agreement about future planning among family members. Given that parents are often the decision-makers for their family members with IDD and that siblings report not being involved in decision-making (Arnold, Heller, & Kramer, 2012), it may be that siblings are unaware of the planning activities of their parents. This may be especially true given that parents report not wanting to discuss the transition of caregiving responsibilities with their offspring without IDD (Griffiths & Unger, 1994; Holl & Morano, 2014).

Stressors of Future Planning

Families may feel uncomfortable discussing future planning due to its emotional nature (Heller & Factor, 1993; Prosser, 1997). For example, parents report being stressed when thinking about future residential arrangements for their offspring with IDD (Thorin & Irvin, 1992). Similarly, siblings report being stressed due to the uncertainty of the future (Burke et al., 2015). Although previous studies have indicated that parents and siblings report that future planning is emotionally-loaded, the particular stressors are unclear. By identifying these stressors, we may be able to develop interventions to ameliorate them.

Barriers to Future Planning

Researchers have reported two main barriers to future planning: financial barriers (Burke et al., 2018) and lack of available services (Burke et al., 2018; Heller & Factor, 1993; Prosser, 1997). Regarding the former, almost 50% of parents report struggling to pay for planning activities (e.g., to pay for an attorney to establish a special needs trust, Burke et al., 2018). Regarding the latter, given the long waiting lists for home and community-based services (Prouty et al., 2003), parents may not conduct long-term planning. Notably, siblings may have unique barriers to conducting future planning. To this end, although nearly half of siblings anticipate caregiving roles, 64% of siblings report being unclear about the future plans for their brothers and sisters with IDD (Griffiths & Unger, 1994). Further, siblings report that their parents do not discuss long-term planning with them (Degeneffe, 2015). It is important to determine whether parents also report a lack of sibling involvement as a barrier. More broadly, it is important to determine whether parents and siblings report similar or different barriers to determine what interventions need to be developed for whom.

Despite its importance, few families report engaging in future planning (Freedman et al., 1997; Heller & Factor, 1993). Without long-term planning, people with IDD are more vulnerable to institutional settings (Burke, Lee, Arnold, & Owen 2017) and parents and siblings report greater anxiety (Griffiths & Unger, 1994). By exploring the perceptions of parents and siblings toward future planning, the facilitators can be capitalized on and the challenges can be targeted for intervention. To this end, our study had three research questions: (1) What is the state of future planning for adults with IDD? (2) What areas of future planning are stressful to families? and (3) What are the barriers to future planning? For each of these questions, we identified similarities and differences among parents and siblings of people with IDD.

Method

We conducted dyadic interviews with 10 parent-sibling pairs (N = 20). Dyadic interviews allow for a shared narrative of the dyad (Arksey, 1996). Specifically, we conducted separate interviews with parents and siblings, respectively. Thus, in total, 20 interviews were conducted.

Participants

For parents, the inclusionary criteria required parents to: (1) have a child with IDD who was 18 years or older; (2) have a child without a disability who was willing to participate in this study; and (3) be willing to participate in an interview and complete a questionnaire. For siblings, the inclusionary criteria required siblings to: (1) have a brother or sister with IDD; (2) be 18 years or older; (3) have a parent who participates in this study; and (4) be willing to participate in an interview and complete a questionnaire. See Table 1.

Table 1

Participant Demographics

Participant Demographics
Participant Demographics

Parents and siblings represented different backgrounds. The ten parent-sibling pairs were from a variety of states including: Arizona, Illinois, Indiana, Michigan, North Carolina, Ohio, and Virginia. All participants were White and female with the exception of a male sibling. Parent participants were between the ages of 49 to 78 (M = 61.64, SD = 10.43); sibling participants were between the ages of 19 to 54 (M = 31.60, SD = 11.27). The people with IDD had various types of disabilities including: intellectual disability (ID), Down syndrome (DS), and autism spectrum disorder (ASD). The age range of people with IDD was from 20 to 44 (M = 27.70, SD = 8.66).

Recruitment

We recruited participants in multiple ways. For example, we distributed information about the study via e-mails and flyers to national organizations (e.g., Sibling Leadership Network) and local agencies. Recruitment materials were also distributed via social media and shared by word of mouth. Recruitment e-mails and flyers included information about the study, sample interview questions, and the participant stipend. Interested individuals contacted us to participate in the study. Each participant received a $20 gift card for participating in the study. After the 10th parent-sibling dyad interview (i.e., 20 interviews), data saturation had been reached (Whittemore, Chase, & Mandle, 2001); no additional data collection was needed. Notably, previous studies have demonstrated that six to twelve interviews are sufficient for data saturation (Coenen, Stamm, Stucki, & Cieza, 2011; Guest, Bunce, & Johnson, 2006).

Procedures

This study was approved by the University Institutional Review Board. Upon meeting the inclusionary criteria, participants were enrolled in the study. Each interview occurred at a location, date, and time that was preferred by the participant. Most participants preferred phone interviews. Only one interview was done in-person. Notably, phone and in-person interviews yield the same findings (Sturges & Hanrahan, 2004). Before the interview, participants signed the consent form and completed the demographic form. Then, the first author conducted and audio-recorded the interview. Parent interviews lasted from 50–80 min. Sibling interviews lasted from 45–75 min. Parents were interviewed first, followed by interviews with siblings. By interviewing parents first, we could use the information provided by the parents in the interviews with siblings. Such information included the planning activities or formal services that were conducted or received.

Instrument

Questionnaire

In the questionnaire, there were three sections: demographic information, the Future Planning Activities scale, and the Family Stress Assessment.

Demographic information

Both parent and sibling participants were asked to provide their demographic information (e.g., age, marital status, annual income, general state of health), as well as information about their family members with IDD (e.g., age, gender, type of disability, and if they received formal services).

Future Planning Activities scale

This scale (Heller & Kramer, 2009) consisted of 11 questions about future planning (e.g., “Have you or your family located an attorney knowledgeable about disability issues?”). Potential responses were: (0) no, (1) yes, or (2) don't know. In previous studies, this scale had strong reliability (e.g., Kuder-Richardson coefficient = .86, Burke & Heller, 2016).

Family Stress Assessment

We adapted the Family Assessment Questionnaire (Thorin & Irvin, 1992) to assess family stress in the participants. The Family Assessment Questionnaire has seven domains (i.e., (1) school, (2) work life, (3) residential services, (4) professionals and agencies, (5) young adult daily life, (6) family life, and (7) future). However, these domains are not specific stressors in relation to future planning. Heller & Caldwell (2006) conducted a study about future planning identifying five domains of stressors: (1) residential arrangements, (2) employment, (3) the daily activities of the individual with IDD, (4) the family, and (5) the future. As such, we used these five domains within the Family Stress Assessment. Participants identified one or two specific concerns within each domain and provided examples of their concerns. For example, with respect to employment, specific concerns included: getting a job; poor quality of work; and keeping a job.

Interview protocol

We developed a semi-structured interview protocol by reviewing the literature about future planning for people with IDD (e.g., Degeneffe, 2015; Heller & Kramer, 2009). To ensure content validity, we asked two researchers in the disability field to review the protocol. We reviewed their feedback and revised the protocol accordingly. We also piloted the protocol with one parent and one sibling. After the pilot, we revised the protocol to add questions about the daily routine and current independent living, employment, and recreational activities of the person with IDD. Each interview was conducted after the participant completed the questionnaire. Each of the questions in the semi-structured interview protocol was asked of all participants. At the end of each interview, we provided a synthesis of what was discussed to informally member check the information provided in the interview. All interviews were transcribed verbatim by the third author. The first author—who conducted the interviews—then reviewed each transcription for accuracy.

Researcher Reflexivity

We, the authors, are siblings of people with IDD; and, the second author is the parent of a child with a disability. At the beginning of each interview, the first author identified herself as a sibling of a person with ASD. Her “insider” status as a family member of a person with IDD may have helped her develop rapport with the participants (O'Toole, 2013). Throughout data analysis, we were cognizant of our own personal experiences and biases as family members of people with IDD. To address this, we conducted validity checks and peer debriefing (Brantlinger, Jimenez, Klingner, Pugach, & Richardson, 2005). Specifically, two peer debriefers were employed for this study. The first debriefer was a faculty member with expertise in qualitative research. The other peer debriefer was a graduate student in special education.

Data Analysis

Questionnaire

We conducted descriptive statistics (i.e., frequencies) for the Future Planning Activities scale and the Family Stress Assessment by using SPSS software.

Interviews

We (i.e., the first and third authors) analyzed the interview transcripts. Initially, we independently read the interview transcripts to become familiar with the data (Tesch, 1990). Then, we used constant comparative analysis (Glaser & Strauss, 1967) and emergent coding (Patton, 2002). Individually, we compared each piece of data to the previously coded data to determine whether the data represented a novel idea (Creswell, 2003). After all data were coded, we compared codes, and developed the codebook with definitions of each code. We returned to the interview transcripts to recode the data independently using the agreed-upon definitions. We met again to debrief about the codes. In total, we found 36 codes. We organized the codes into categories and grouped the categories into themes. For example, the previously mentioned codes (i.e., difficult systems navigation, financial cost, limited quality programs for adults with IDD) were categorized and then grouped into the theme: “Systemic Barriers.” We found three themes with regard to barriers to future planning.

Trustworthiness

For the credibility of our findings, we triangulated data sources (e.g., demographic forms, interview transcripts) and used negative case analysis (Brantlinger et al., 2005). No opposite themes were found. In addition, we debriefed with each other and conducted member checking (Lincoln & Guba, 1985). After the debriefing, we individually coded and reanalyzed the data to ensure triangulation. To determine if the findings reflected the experiences of the participants, we conducted member checking (Brantlinger et al., 2005). Specifically, we e-mailed a summary of each interview to each participant and asked them to validate, add, or change any of the themes. All participants completed the member checking; only minor changes were suggested.

Findings

Current State of Future Planning

Although most of the parent-sibling dyads had discussed future planning within their respective families, they also reported that their discussions lacked specificity. For example, participants reported that their family members with IDD will secure “enjoyable” jobs or “part-time” jobs. However, they never specified the type of job or how they will attain and sustain such employment. Across the parent-sibling dyads, we found agreements and disagreements with respect to planning in the following areas: independent living; employment; recreation; and future planning.

Independent living

Seven dyads agreed on future planning in relation to independent living. Of the seven dyads, three families established plans in which the siblings would be caregivers; specifically, the people with IDD would move in with the siblings. Two families expected people with IDD to continue living in their current homes with support. Two families planned that the person with IDD would move into a group home. However, three families reported different plans between the parents and siblings. Among these families, the siblings assumed that they would live with their brothers and sisters with IDD while their parents planned that the people with IDD would live in group homes. For example, a 67-year-old mother of a son with DS, reported, “Well, we were in this group of parents that were going to like buy a house and there was like six people with disabilities that were going to live in it.” In contrast, her 28-year-old son reported,

Roy [the brother with DS] [may live] in Joy's [a sister without a disability] house. She got a townhouse recently and there is a room for Roy when she got that. Mary [another sister without a disability] similarly has extra room in her house. So, I think there is a plan in their minds.

Employment

Most dyads agreed that their family members with IDD will either have part-time jobs (3–5 hours per day) or not have jobs in the future. However, three parent-sibling dyads reported different future plans about employment. For example, some parents perceived that their offspring with IDD would obtain a generic job (e.g., bagger) while siblings assumed their brothers or sisters with IDD would either find a job that fits their interests or have no job at all. For example, one sibling did not envision employment for her sister while the parent assumed the person with IDD would have a menial job in a safe environment. The 41-year-old sister reported, “She [the person with IDD] would not be an employable person. Like… a lot of it is her size. She's very tiny.” In contrast, her mother reported, “I do believe that she could work like a menial job.”

Recreation

Except for one dyad, parents and siblings agreed that their family members with IDD will maintain their current recreational activities (i.e., Special Olympics, social group outings) in the future. Only one sibling expressed her desire to expand social opportunities for her sister with ID. To this end, a 46-year-old sister of a person with ID, reported, “One of our goals this year is to come up with some ideas that would make that a little bigger…. it's tricky because she's so limited. But, we're exposing her to stuff and she knows what she likes.”

Future planning

Both parents and siblings reported the same future planning activities including: identifying a successor to the current family caregiver (n = 8 dyads) and discussing future plans with a family member with IDD (n = 6 dyads). The least commonly agreed upon activities included: creating a letter of intent (n = 2 dyads), establishing legal guardianship (n = 2 dyads), and creating a power of attorney (n = 1 dyad). In general, agreement about planning ranged from 36.36% to 100% (M = 59.09%). See Table 2. Notably, six siblings checked the “Don't know” response option for the definitive activities. The most disagreed upon activities included: discussing planning with the entire family (n = 6 dyads) and creating a power of attorney (n = 6 dyads).

Table 2

The Level of Future Planning Between Parents and Siblings

The Level of Future Planning Between Parents and Siblings
The Level of Future Planning Between Parents and Siblings

Stressful Areas of Future Planning

The most common stressors were: demands or strains on the family (n = 15); capabilities of the young adult (n = 13); quality of the residential services (n = 12); getting a job (n = 12); and financial concerns (n = 11). Although parents and siblings reported mostly similar stressors, siblings reported greater stress in relation to: family problems (n = 6 siblings, n = 1 parent); future planning (n = 6 siblings, n = 4 parents); social and interpersonal skills (n = 6 siblings, n = 3 parents); and communication/interaction with providers (n = 5 siblings, n = 2 parents). Further, parents reported greater stress in relation to: behaviors of the young adult (n = 4 parents, n = 2 siblings); support needs for adult living (n = 5 parents, n = 3 siblings); general uncertainty (n = 5 parents, n = 3 siblings); and getting residential services (n = 5 parents, n = 2 siblings). Regarding within-dyad agreement, overall, agreement was low (i.e., never exceeding 50%). Specifically, five dyads agreed on the following stressors: support needs of the young adult, demands or strains on the family, and quality of the residential services. Therefore, it seems that parents and sibling dyads had different stressors. See Table 3.

Table 3

Concern Areas of Future Planning

Concern Areas of Future Planning
Concern Areas of Future Planning

Barriers to Future Planning

We found three main barriers: family-related barriers; systemic barriers; and barriers for people with IDD. Parents and siblings reported some similar and some different barriers. Both parents and siblings reported the following barriers: uncertainty of the future, family communication, lack of systemic supports, and financial costs. Unlike siblings, parents also reported systems navigation and the vulnerability of the people with IDD as barriers. Unlike parents, siblings reported different perspectives among family members and struggling to balance their own lives as barriers. See Table 4.

Table 4

Barriers to Future Planning Among Parents and Siblings

Barriers to Future Planning Among Parents and Siblings
Barriers to Future Planning Among Parents and Siblings

Family-related barriers

Parents and siblings reported family-related barriers including: the uncertainty of the future; family communication; different perspectives among family members; and siblings struggling to balance their own lives.

Uncertainty of the future

Because of the uncertainty of the future, parents and siblings found it difficult to discuss future planning. A 54-year-old sister reported, “I was anticipating like ‘Ok, what if my mom… something happened to her.'…I should be thinking. ‘What are we…what are our options here?'.” Her mother also worried about the future: “And I'm concerned…what's going to happen if something like that [unexpected death] happens to me? I've got to get on the ball and do some more.”

Family communication

Both parents and siblings discussed a lack of family communication as a barrier. Parents reported that conversations about future planning were often superficial. Similarly, siblings reported that they were unaware of the planning activities of their parents. For example, a mother of a 23-year-old with DS reported,

We only ask them [siblings] what they think. We're not asking their opinions right now. Sometimes they [siblings] give us their opinions. We really haven't said much to them. I think they leave it up to us.”

Her son reported,

I'm not sure [about future planning] exactly to be honest. I think…I don't know. My parents and my sister probably know the answer better than I would.

While most parents made all of the decisions, a few siblings initiated discussions with their parents about future planning. For example, a 29-year-old sibling reported,

It would honestly just be easier if you [mother] would stop acting like you're guilty about it and talk to me… I think like that's the hardest part–really more than anything–having those open conversations of like figuring out how to make sure that I know everything I need to know about the benefits that she is getting so that I can manage and facilitate that down the road. It's really hard for me to plan the way that I am without knowing all the ins and outs I feel like I need to know.

Her mother reported, “Have I talked to them about it [future planning]? Well… yes and no. I mean, not in depth. I mean, you know, we've talked about it… but not to an extent to come up with a definite plan.”

Different perspectives among family members

Half of the siblings reported different perspectives among family members regarding future planning; none of the parents reported this as a barrier. A few siblings reported that their parents were overprotective and had low expectations for their family members with IDD. For example, a 26-year-old sibling of a person with ID reported,

She [the mother] comes very much from a mother perspective of wanting to protect her [the individual with IDD] and make the right choice; where I am definitely more of an inclusive mindset and want my sister to be fully included in the community as much as she is capable of.

On the other hand, a brother of a 22-year-old male with DS reported that his parents had unrealistically high expectations for supports for his brother. He reported,

I think my parents' requirements for what would have to be in a group home are so high that I can't imagine him [Roy] leaving our [family's] house. I'm sure if the opportunity arises and everything is met in my parents' checklist, he would move…. but I find it unlikely.

Siblings struggling to balance their own lives

Only siblings reported struggling to balance their own lives with their impending caregiving roles. For example, some siblings were currently enrolled in college or graduate school and lived away from their parents. As such, siblings struggled to meet their school obligations while also planning for the future. In addition, married siblings reported struggling to meet their own family's needs while also engaging in long-term planning. For example, a sibling of a 21-year-old with ID, reported, “Honestly, I have a lot of stress within my own family so I really don't [stress about future planning]. I have a special needs child of my own. So, I really don't stress a lot about what's going on with [sister] because I know she's well taken care of right now.”

Systemic barriers

Parents and siblings reported systemic barriers including: limited quality programs for adults with IDD, financial costs, and systems navigation. Notably, systemic barriers included limited programs for adults with IDD as well as limited supports for future planning.

Limited quality programs for adults with IDD

Parents and siblings reported: poor high school transition planning; limited options and poor-quality programs for adults with IDD; and unqualified professionals in the disability field. Both parents and siblings reported that, without appropriate services for people with IDD, there was no need to conduct long-term planning. For example, a sibling of an adult with DS, reported,

The resources available have not been the greatest. There might be some that are good but they just don't fit what Nate [brother with DS] might like… not to say that there are not good resources out there but they just don't fit Nate's interests.

Her mother reported, “The current offerings in the state are not satisfactory to me. Living in a congregated group setting with strangers… it's just not [what he wants].” In addition, finding reliable professionals was also a barrier to future planning. A mother of a 19-year-old with ASD reported,

In Arizona, we have habilitation providers but ever since he got older, it's very, very, difficult to find somebody and they're not paid a lot. So, when you get somebody, they're really not any help and they're not trained. They don't know what they're doing.

Similarly, her daughter reported the limited professional supports for employment. She said, “He can do certain stuff but he needs a little guidance. So, a lot of jobs right now don't have that [guidance].”

Financial costs

Many families reported that state budget cuts impeded their definitive planning activities and access to needed services for their family members with IDD. A mother of a 32-year-old with ASD, reported, “We had the money to pay for Brad [attorney] to write a will and a trust. And that's not cheap. You know? That's a $4,000 or $5,000-dollar effort.” Similarly, a 23-year-old sister of a person with DS reported, “There is no such program [e.g., for personal assistants] right now in our area that is financially affordable and also really gives [brother with DS] what he needs.”

System navigation

Only parents reported barriers with service delivery system navigation. Specifically, after people with IDD exited the school system, parents struggled to access services. A 62-year-old mother of a son with ID, reported

I think that there are programs out there where the government will like sponsor…. the government will pay part so the child can work there. I mean…I think I've heard in the past of those programs, but I don't know how to access them.

Barriers for individuals with IDD

Most parents were worried about victimization of their offspring with IDD; thus, the majority of parents encouraged their offspring with IDD to stay home. For example, a 42-year-old mother of a daughter with ASD, reported:

In terms of future planning? Stranger danger. It's like getting to be a bit of a problem. That's the thing that worries me most. We live in a small town and she's very well known around here, so she's relatively safe. But, were we to move to a more populated county or a larger city, she would require a lot more supervision out in public than she does right now.

Notably, siblings did not report any barriers related to their brothers and sisters with IDD.

Discussion

In this study, we explored the perspectives of parents and siblings with respect to future planning. We had four main findings.

First, family communication matters. Across the questionnaires and interviews, parents and siblings confirmed a lack of communication including: disagreements about future planning activities and different stressors. Aligned with previous research (Chambers et al., 2004; Coyle, Kramer, & Mutchler, 2014), many parents and siblings acknowledged that they never had formal discussions about future planning. Surprisingly, siblings most disagreed about definitive planning activities (i.e., discussing future planning with the family, creating a power of attorney). Without communication, families cannot work together to create long-term plans.

Second, consistent with previous studies (Bowey & McGlaughlin, 2007; Burke et al., 2018), many families reported conducting greater aspirational (versus definitive) planning activities. Furthermore, most activities lacked specificity. Without specificity and definitive future planning, the “status quo” may be the default plan. For example, families may maintain the current living situation and activities (i.e., living in the parent's house, participating in the current day program and social activities) as long as possible (Chambers et al., 2004). These findings suggest that families may need guidance to engage in specific, definitive future planning.

Third, we identified particular stressors in future planning. Consistent with prior studies (Burke et al., 2018; Heller & Factor, 1993; Prosser, 1997), parent-sibling dyads reported financial concerns and the absence of systemic supports as common stressors. However, there were also many within-dyad discrepancies regarding stressors. Parents (versus siblings) were more stressed about the support needs of their offspring with IDD and obtaining appropriate services. These stressors align with previous research regarding the absence of adult services (Burke et al., 2018). On the other hand, siblings (versus parents) reported more interpersonal and family stressors. Although revamping the service delivery system would take resources and systemic change, the sibling-reported stressors may be more easily overcome by increasing family communication and providing needed support.

Lastly, parents and siblings identified several barriers to future planning. As demonstrated by prior research, the inadequacy of the service delivery system and financial concerns were key barriers (Burke et al., 2018; Prosser, 1997). Thus, systemic changes to the service delivery system may be warranted. However, we also found unique barriers to future planning such as the vulnerability of people with IDD (as reported by parents) and the struggle to balance their own lives (as reported by siblings). Regarding the former, prior research has indicated that parents may be overprotective of their offspring with IDD resulting in less access to inclusive activities (Beck, Daley, Hastings, & Stevenson, 2004). Indeed, siblings have also reported that parents are overprotective of their family members with IDD (Burke et al., 2015).

The struggle with addressing future planning while juggling their own family lives has received some attention in the research. To this end, siblings are often called the “club sandwich generation” as they may not only care for their brothers and sisters with IDD but also for their aging parents and, potentially, their own offspring (Hodapp, Sanderson, Meskis, & Casal,2017). Therefore, siblings may need interventions that address their unique support needs as compound caregivers. Unfortunately, to date, few interventions have targeted the needs of siblings (Hodapp et al., 2017).

It is important to acknowledge the limitations of this study. First, the participants were primarily White, female, and highly educated. Thus, the findings may not be transferable to more diverse populations and/or to male siblings and fathers. Also, this study was limited to one point in time; longitudinal research may shed light on how the perspectives of parents and siblings change over time in relation to future planning. Additionally, this study did not include the perspectives of peoples with IDD. Without the perspective of the person with IDD, it is impossible to tell whether future planning reflects their desires, needs, and preferences.

Implications for Future Research

Research about future planning should include all family members—including adults with IDD. Given that long-term planning is a family dynamic, it is necessary to include and explore the perspectives of each family member. Some previous studies have shed light on how future planning could include people with IDD. For example, Morningstar and colleagues (1996) conducted an interview study about transition planning. Specifically, they interviewed young adults with IDD about their perspectives toward future planning. Future research may turn to this study as an exemplar of how to include people with IDD in research.

In addition, research should more closely examine stressors in relation to future planning. Although little research has been conducted about stress among siblings of people with IDD (Hodapp et al., 2017), there has been a wealth of research concluding that parents of people with (versus without) IDD experience significantly greater stress (e.g., Hayes & Watson, 2012; Singer, 2006). Further, research has identified unique contributors to parent stress such as child maladaptive behavior (Neece & Baker, 2008) and poor family-school partnerships (Burke & Hodapp, 2014). By identifying unique stressors, interventions can be developed to ameliorate them (e.g., applied behavior analysis to address child maladaptive behavior). From this study, it seems that there are unique future planning stressors that may impact parent and sibling well-being. Future research should identify the specific stressors to which family members are exposed, available resources (e.g., coping strategies) to address those stressors, and the ways stress is expressed.

Implications for Practice

Practitioners may be instrumental in facilitating communication among families with respect to future planning. Many siblings of people with IDD report that practitioners do not include them in service coordination (Arnold et al., 2012; Heller & Kramer, 2009). At the most basic level, practitioners should invite siblings to service plan meetings and other events. Beyond that, practitioners should work with parents and siblings to offer an open dialogue about current services and future planning. Although this can be done informally (e.g., a meeting with the parent and sibling), practitioners could also offer formal future planning interventions (e.g., Future is Now, Heller & Caldwell, 2006 and Transitioning Together, DaWalt, Greenberg, & Mailick, 2018).

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