Abstract

This qualitative study examines the support needs of adult siblings of people with developmental disabilities. A survey completed by 139 siblings of people with developmental disabilities captured the needs of adult siblings through 2 open-ended questions. A grounded theory approach was used, and the sibling responses anchored the analysis, interpretation of findings, and discussion using the constant comparison method. Eleven core variables and 3 overarching themes emerged. Three overarching themes for sibling support needs include: (a) getting disability-related information, (b) getting support for their caregiving role, and (c) enhancing the formal support system to address sibling needs.

Siblings of people with disabilities have been traditionally overlooked by parents, professionals, and researchers as a group with support needs and as potential advocates for their siblings with disabilities. Although the needs of people with developmental disabilities and their parents have been the focus of extensive research within the disability field, research on the needs of siblings is lacking (Hodapp, Glidden, & Kaiser, 2005). Much of the early research pathologized the experience of growing up with a brother or sister with a disability (Stoneman, 2005). More recent research on the sibling experience finds a mix of both positive and negative outcomes (Gallagher, Powell, & Rhodes, 2006). The support needs of adult siblings of people with developmental disabilities have received little attention by researchers up to this point. This study aimed to help fill this gap and give voice to the perspective of siblings so that their needs could be addressed by professionals and policymakers.

Siblings often become the next generation of caregivers when parents are no longer able to fill this role (Heller & Kramer, 2009). Sixty percent of people with developmental disabilities live with their families, and in 25% of these homes the primary caregiver is over the age of 60 (Braddock et al., 2011). As parents age and are less able to support their child with a disability, the involvement of siblings in the lives of their brothers and sisters with disabilities becomes more necessary. A review of the adult sibling literature found that most siblings anticipated taking on a greater supportive role in the future (Heller & Arnold, 2010).

The perspective of siblings of people with disabilities has not been looked at extensively in the research on families and disabilities, and the parent perspective is often incorporated, which is not always the same as siblings' self-reporting. However, a national survey of adult siblings by Hodapp, Urbano, and Burke (2010) showed siblings have service needs related to their struggle to balance care for their sibling with disabilities, their aging parents, and their own families. A study by Rawson (2009) interviewed siblings aged 17–23 years whose brothers and sisters with disabilities lived in a residential school for people with complex needs and found that siblings needed transition information, specifically on legal and financial planning, housing, and education. Siblings requested greater communication and wanted to be engaged in the decisions related to their brothers and sisters with disabilities. Also, Heller and Kramer (2009) surveyed adult siblings and found that the major support needs of siblings include the need for information, especially on planning for the future, as well as support groups both in person and online. The present study builds on the research done with siblings of people with disabilities and goes into greater depth with the perspective of siblings through a qualitative analysis.

Although support programs and services have been developed for individuals with developmental disabilities and their parents, supports for their siblings have been limited and mostly focused on children. There has been some intervention research that looks at the supports for siblings when they are children. Targeting nondisabled siblings for interventions to teach interaction skills and strategies was found to increase sibling play, communication, and successful interaction (Celiberti & Harris, 1993; Clark, Cunningham, & Cunningham, 1989; James & Egel, 1986). Sibling support groups for children were found to improve self-esteem, increase knowledge of their sibling's disability, and enhance interactions between siblings (Evans, Jones, & Mansell, 2001). Groups such as Sibshops provide “opportunities for brothers and sisters of children with special health and developmental needs to obtain peer support and education within a recreational context” (Meyer & Vadasy, 1994, p. 1). An evaluation of Sibshops by Johnson and Sandall (2005) suggests that providing support to siblings during childhood can have an enduring positive effect throughout their lives.

As siblings become more involved in the care of their brother or sister with a disability, their own support needs may increase. By understanding the needs of nondisabled siblings, parents and professionals can better empower and encourage siblings in supporting their brothers and sisters with disabilities. This study investigates the support needs of siblings of people with a developmental disability so they can be addressed by parents, professionals, and policymakers.

Method

The present study was part of a larger survey study of adult siblings of people with developmental disabilities (Heller & Kramer, 2009) that focused on the factors influencing involvement of siblings of individuals with disabilities in future planning. For the present study, selected items from the main survey were analyzed using two of the open-ended questions from the original survey, which allowed respondents to share their concerns and support needs.

Sample

The sample included 139 adult siblings of people with developmental disabilities. Adult siblings of people with developmental disabilities aged 18 and older were recruited through two strategies: an online Yahoo! Group listserv called SibNet and a statewide sibling conference. First, information about the research study was posted on SibNet, a listserv for adult siblings of people with disabilities. At the time of dissemination, SibNet had 485 members with unique e-mail addresses, yet only 426 of those e-mail addresses were valid. One hundred sixteen SibNet members responded, and eight respondents were excluded who were under 18 years old and therefore below the age of consent. The total number of respondents from SibNet in this study is 108 siblings. Second, surveys were handed out at a statewide sibling conference to 57 people. The survey was completed by 31 siblings who attended the conference. Combining the respondents from SibNet and the sibling conference, the overall corrected sample consisted of 139 respondents out of 483 for a response rate of 31%.

Demographics of respondents and their sibling with disabilities are shown in Table 1. The average age of all respondents is 37 years old with ages ranging from 18 to 62 years. The vast majority of respondents (92%) were female with no minority status (87%). Most respondents had an education level of some college or more (93%). Over half the sample was married, and 37% had between one and eight children. Sixty-nine percent of the respondents had family incomes over $40,000. For individuals with developmental disabilities, the average age was 34 years (range  =  10–72 years). Sixty percent of siblings with disabilities were brothers. About 75% of siblings had an intellectual disability with the remainder having other developmental disabilities. The living situation of siblings varied, with 41% living at home with parents, 8% living with their nondisabled siblings, 24% living in a residential facility, 7% living with other family members, and 11% living with a spouse or independently.

Table 1

Demographics

Demographics
Demographics

Survey

The Supporting Siblings Survey included 59 questions that focused on respondents' sibling with a disability, their parents, their relationship to their siblings, and their family's future plans. Feedback on the survey was gathered from people with developmental disabilities, parents, and siblings. Pilot testing was done to help strengthen and finalize the survey. Most of the questions were close-ended with only the last four questions being open-ended. The open-ended questions captured descriptive information about the concerns and the support needs of siblings. For the focus of the research in this study, the two specific questions used to explore the support needs of siblings included: “What programs would you like to see targeted towards families of people with disabilities?” and “What programs would you like to see targeted towards siblings of people with disabilities?” These two questions provided space for siblings to write any thoughts and ideas that were relevant to their support needs.

Analysis

A grounded theory approach was used, and the meaning and relationships of the data grew out of the qualitative content analysis that was used to systematically categorize and classify responses (Weber, 1990) to the two open-ended questions. The use of primary source data ensured the perspective of siblings remained central to the understanding of their support needs. Emergent coding was used to establish categories after preliminary examination of the data (Patton, 2002). Responses ranged from a few words to a paragraph. The responses to the open-ended questions were transferred from SPSS to a Word document with no identifiers. Two coders, both family members of people with developmental disabilities in the disability field, independently read through all the responses to begin the inductive process of identifying overarching patterns and themes. The intercoders compared and discussed the list of core variables they had each created and came to consensus on a coding frame as well as clarified definitions. Using the coding frame, the intercoders independently coded the responses to each open-ended question. Through comparison of the coded responses, the intercoders refined the coding frame slightly and further defined the codes. The finalized coding frame (see Table 2) consisted of 11 core variables for sibling support needs. All coded responses were compared and showed 80% agreement. Any discrepancies were addressed until 100% agreement was reached for the coding of core variables to each response. This multistage process was used to verify the interrater reliability of the data (Sarantakos, 1993). Member checking ensured rigor in the analysis. Two sibling respondents reviewed the coding frame and provided feedback to further refine the definitions of the codes. The two respondents also helped develop the themes associated with the codes through discussion with the lead researcher. They came up with catchy headings that captured the themes, and they identified the specific codes that fit underneath each theme. The constant comparison method was used to ensure that the results were grounded in the data (Patton, 2002). The raw data was continuously referenced throughout the analysis, interpretation of results, and discussion. A description of the support needs of siblings is highlighted in the results using quotes from siblings.

Table 2

Support Needs of Siblings

Support Needs of Siblings
Support Needs of Siblings

Results

The results of the present research captured the perspective of siblings and described the support needs of siblings. Of the 139 survey respondents, 120 shared their ideas for support needs. Quotations from the participants' open-ended responses highlighted the experience of siblings. The overarching themes that emerged from the data provided the framework for the support needs of siblings. Three overarching themes emerged that included 11 core variables. Table 2 shows the support needs of siblings. “Include me” emerged as a theme that encompassed two variables: sibling support, indicating the need for more sibling support services to connect siblings, share information, and provide support; and inclusive family, regarding the need for a more inclusive definition of family that includes siblings and not just parents. “Start spreading the news” was another primary theme related to siblings' need for information. Four core variables were captured within this theme: (a) education, indicating the need for education and training opportunities such as conferences, workshops and seminars; (b) future planning, indicating the need for information and support on planning for the future, such as financial and legal planning, guardianship transition, and estate planning; (c) system navigation, regarding information on how to navigate the system; and (d) disability awareness, for more education of the public about people with disabilities. “Fix the mess” was another major theme that included three variables: (a) system improvement, regarding the need for improvement in the support system, such as shorter waiting lists, better service coordination, transportation, supported living services, better pay and career advancement for direct support professionals, and more; (b) funding, for more funding sources or financial support; and (c) respite, for in-home and out-of-home respite services. Table 3 shows the frequency of sibling support needs. The top five support needs included sibling support (53%), education (35%), inclusive family (34%), future planning (31%), and system improvement (23%).

Table 3

Frequency of Sibling Support Needs

Frequency of Sibling Support Needs
Frequency of Sibling Support Needs

Include Me

The overarching theme of “include me” highlighted siblings' yearning to be included in supports and services. Two core variables included sibling support and inclusive family.

Sibling support

Respondents were emphatic that they wanted more sibling support, making comments such as, “Group support with other siblings to enable open conversation about the many issues involved.” They clearly wanted support “just like their parents!” as one respondent exclaimed. Numerous respondents shared the importance of targeting siblings as a group with support needs because they have felt neglected and desperately wanted to be included. One sibling wrote:

More support for siblings. It felt like a guilty secret when I was a child and knew nobody in the same situation as myself. Also the professional people who spoke to my brother over the years never thought to ask me how I was.

Another sibling shared, “I think that a sibling support group would be appropriate. Sometimes, we as siblings tend to feel alone and isolated from others when we spend a lot of time caring for our sibling.” And, another sibling said, “I think there need to be more groups for adult siblings. People tend to forget about the siblings anyway especially after they are adults.” The need for sibling support was distinguished as an important way for siblings to “talk about their concerns” and get “advice/support with other adult sibs in my same situation.” Sibling support can provide a space where siblings “can become empowered before crisis occurs.” One sibling shared how an Internet sibling group “was my first introduction to feeling ‘normal’.” Another sibling wrote how she had begun advocating for the creation of an adult sibling group with her local Arc.

Inclusive family

Another area of need is the notion of a more inclusive definition of family that includes siblings and not just parents. Siblings expressed their desire to be part of the services that are offered to families in general. Respondents wanted supports that included “the whole family not just parents.” They wanted to have their voice heard and be treated as people with a valuable role and perspective. One sibling shared, “I want to see more adult siblings being included in the ‘Family’ theory. I want us to be invited to meetings, and our thoughts and ideas respected.” Another sibling wrote:

I think there needs to be a focus on the family as a whole and creating programs that provide the opportunity for all family members to participate. There is not any consideration or emphasis on siblings being a valued part of the family and being included.

Start Spreading the News

The overarching theme of “start spreading the news” represented the respondents' need for information and education. The four core variables that made up this theme consisted of the following types of information gathering: (a) education and training opportunities, (b) future planning, (c) how to navigate the system, and (d) disability awareness education of the general public.

Education and training opportunities

Education was the second highest support need, with 42 siblings indicating the need for education and training opportunities such as conferences, workshops, and seminars. “I think siblings need information around many of the same issues as parents,” stated one respondent. The siblings felt it was important to make “access to information more open” since much of their current experience is that “[w]e have to seek everything out for ourselves.” Specific information topics were on “how to advocate for the rights of their siblings” and information “for sibling caregivers as their family member [with disabilities] and parents age.”

Future planning

Siblings wanted “[f]amily programs so parents and siblings go through future family plans together.” The primary aspect of future planning noted was to “[e]ncourag[e] families to talk about and plan for the future.” Getting the dialogue started was a key aspect of future planning that helped to get families talking about their concerns and taking concrete steps to address those concerns and prepare for the future. The worry about what will happen when parents die could then be discussed, and families could begin the process of “making the transition of guardianship from parents to siblings.”

System navigation

Siblings indicated a need for information on how to “maneuver within the system.” Suggested information from respondents for navigating the system included the “rules/lingo/services to ask for,” “how long waiting lists are,” and “explanations of Medicaid programs.” Another suggestion was “info on programs and how to apply” since this family “could have saved several thousands a year” if it had been aware of how to access certain services. “Easier ways to cut through the red tape of finding services appropriate to the sibling” was highlighted by one respondent. A suggested method for presenting information was “how-to guides on how to get/maintain services” and to give information so siblings felt “that they do not have to do everything on their own.” There is a need for “programs that explain how to get services and what services are provided.”

Disability awareness education

Disability awareness was a support need suggested by siblings as a means to educate the public about people with disabilities. Through increased awareness, one sibling hoped she would “see our society more inform[ed].” Suggested methods of educating the public included providing “information about disability issues in schools” and including “more positive things in the media with siblings of disabled people.”

Fix the Mess

The overarching theme of “fix the mess” covered three core variables that focus on needs of siblings regarding the formal disability service system including (a) system improvement, (b) funding, and (c) respite.

System improvement

Siblings shared their frustration with the system and the need for great improvement in the system to better support their entire family. Different aspects of the system were mentioned, such as a “better system of checks and balance over group homes,” “alternatives to supervised group housing,” “better and consistent service coordination for people with disabilities,” and “better pay and career advancement for direct care workers.” One sibling articulated her needs by writing the following:

I need support and choices for residential living. As it appears now, I will have to have her live with me, which I don't believe will be the BEST thing for either of us. I would like to live close to her though and see her in a healthy residential group.

Another sibling shared that she felt the service system “doors are not sibling friendly. Service providers discourage, not encourage, involvement.”

Funding

The need for funding sources and financial support was indicated by siblings. The current funding is not adequate for all families, and one sibling stated, “SS [Social Security] doesn't go far enough.” One sibling articulated the need for the following:

A LOT more money for individuals on Social Security—at LEAST to the level of poverty; FULL medical care, meaning parity with services for the mentally ill. Caretaker siblings receiving financial compensation when they are caring for a sibling.

Funding is an important source of support for families of people with disabilities so that families “have more options about the care of their child.”

Respite

Respite services were needed to give families “a break” and have time apart from the person with a disability to do other tasks and rest. One sibling described respite: “[S]omeone to watch the disabled individual while they go on vacation and small breaks throughout the week for an hour or two to get things done.” Respite can be an important service that can help “families to stay together” instead of turning to residential facilities. It can alleviate some of the caregiving of families.

Discussion

The support needs found in this research study highlight the gap in meeting siblings' needs. Three overarching themes for sibling support needs include: (a) getting disability-related information, (b) getting support for their caregiving role, and (c) enhancing the formal support system to address sibling needs.

Information Needs

Siblings need information, just like parents and people with disabilities. Respondents articulated strong needs for education and training opportunities such as conferences, workshops, and seminars. Research that looks at families of people with disabilities shows that the needs of families include information on housing options, financial planning, and guardianship as well as the need for case management, advocacy, and support groups (Heller & Factor, 1994). A model of a future-planning curriculum that includes siblings and has tested outcomes is The Future is Now (Factor et al., 2010; Heller & Caldwell, 2006). Families that participated in a future-planning training intervention took steps to plan for the future such as to develop a special needs trust, complete a letter of intent, and to take action on residential plans for their adult family member with developmental disabilities. Also, the intervention reduced feelings of caregiving burden and increased choice-making opportunities of people with disabilities (Heller & Caldwell, 2006). More future-planning programs should include both the siblings with and without disabilities in the entire process. And, more research needs to be done on the outcomes of future planning and the effectiveness of different training models.

One challenge is getting information to siblings. Although an extensive network of people with disabilities and parents exists through the formal disability support system, information is often not transferred from these established networks to siblings.

Inclusion of Siblings

A concept that resonated throughout the results was that siblings felt that their voices were not being heard and their needs were not being adequately met. The literature on siblings clearly shows how siblings provide critical support to people with developmental disabilities throughout their lifespan. Siblings have the inside story about their siblings' with disabilities habits and preferences, health care history, important relationships, and much more. As the people with the longest lasting relationships, siblings have a wealth of knowledge about their brothers and sisters with disabilities that could be invaluable to professionals and service providers. Therefore, parents and professionals should engage siblings as partners in planning to enhance the support of people with disabilities.

Along with being left out of research and services, siblings are also often left out of the disability advocacy movement. Siblings are an untapped constituency for policy advocacy that can increase the power in the disability advocacy movement. If there are over 3.7 million people with developmental disabilities in the United States (Fujiura, 1998; Larson et al., 2001; U.S. Census Bureau, 2010), and most of these people have at least one sibling, the number of potential advocates grows exponentially. Siblings with and without disabilities can support each other to get involved in advocacy together and learn how to help push the policy system. Also, sibling voices at the policy table may help to ensure more supports are allocated for their unique concerns and needs.

Formal Supports

The highest ranking need in this study, sibling support services, indicated that siblings want ways to connect with each other, share information, and provide support. The present study reinforced the results of the previous study that noted that siblings want support groups, workshops, and trainings for siblings and families (Heller & Kramer, 2009). An important source of information and networking for siblings is the online listserv called SibNet where adults who have a brother or sister with a disability can connect (www.siblingsupport.org/connect/the-sibnet-listserv).

The Sibling Leadership Network (SLN) is a national nonprofit with state chapters created to support siblings of people with disabilities and provide a stronger voice for siblings. The SLN's mission is “to provide siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families” (Heller et al., 2008, p. 4). Siblings want a stronger voice at the policy table to balance the perspective of parents and to walk with their brothers and sisters with disabilities to effect change.

Siblings want to be included in supports that are provided to families. Although many programs and services publicize that they are open to “families,” this typically means parents, and they are not always welcoming to siblings. Family support programs often do not consider the perspective of siblings or target siblings in their marketing. Currently, family support policy does not specifically include siblings. The SLN “believe[s] it is time to strengthen family support policy by explicitly including brothers and sisters of people with disabilities in federal family support program guidelines” (Heller et al., 2008, p. 13).

The SLN developed a policy white paper entitled “The Sibling Leadership Network: Recommendations for Research, Advocacy, and Supports Relating to Siblings of People with Developmental Disabilities” (Heller et al., 2008) that had key recommendations that can help address the support needs of siblings in the present research study. These included creating a national clearinghouse for sibling resources and providing information and education to siblings, parents, and professionals. The SLN white paper provides a road map for addressing the support needs of siblings.

Policy Implications

There is a lack of policies that support siblings of people with disabilities in the United States. Kramer's (2008) study of siblings pairs, including siblings with and without disabilities, showed that siblings “believed their efforts to change policy could enhance their support and lead to increased participation with their sibling with [intellectual and developmental disabilities]” (p. 107). As respondents highlighted, the formal disability service system is often difficult for siblings and their families to navigate. Policy advocacy is a key aspect of the SLN and is committed to creating an organization that works with people with disabilities. The SLN has partnered with the national Self Advocates Becoming Empowered (SABE) to ensure the sibling organization is truly advocating with people with disabilities since they are the true experts. This approach models how siblings can learn from each other and work together to improve the system for their entire family.

The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act) is the legislation that created important programs for people with developmental disabilities and their families. The SLN is advocating for the specific inclusion of siblings in the definition of family on the reauthorization of the DD Act. Also, increased involvement of siblings in the developmental disabilities network programs is recommended such as sibling participation on the sister agencies' advisory councils. Involvement of siblings should be evaluated with specific outcome measures that include siblings in the participation of families (Heller et al., 2008).

With the impending long-term care crisis, policies must take into account the needs of caregivers without forgetting siblings of people with disabilities. Policy for family caregivers is severely lacking and significantly underfunded. There are only two federal programs designed specifically to support family caregivers. The National Family Caregiver Support Program was established in 2000 as the very first national initiative to address family caregivers directly. It was enacted under Title III-E of the Older Americans Act Amendments of 2000. It provides funds to states specifically to serve caregivers of adults age 60 or over and to grandparents providing care to children (Heller, Caldwell, & Factor, 2007; Levine Halper, Peist, & Gould, 2010). The Lifespan Respite Care Act was enacted in 2006 to provide in-home and out-of-home respite for caregivers to get relief to provide quality care to their loved ones. However, it was not funded until 2009, and then it received a minimal appropriation allocating only $2.5 million (Levine et al., 2010) of the total $53.3 million needed to fully fund the program (Heller et al., 2007). This allocation is very small in light of the $375 billion the government is saving because of the work of unpaid family caregivers (Family Caregiver Alliance, 2009). Recommendations for policies include fully funding the Lifespan Respite Care Act and the Family Caregiver Support Program. Along with funding these programs, the government also needs to target the unique needs of siblings. Additional recommendations include providing financial assistance to family caregivers and expanding the Family and Medical Leave Act to provide paid leave time to siblings. Since family caregivers are the bedrock of the long-term care system, with siblings being an especially underserved group, they need to be supported to continue to play an important role and become recognized partners in the solution to the long-term care crisis in the United States.

Limitations

Some limitations exist in this research. The study used a cross-sectional data set from only one point of time. Also, a convenience sample was used, capturing responses from siblings who were already connected to some sibling support, and the results may not be generalizable to siblings who are not connected to SibNet or sibling conferences. This may be a more involved group than is typical and may not represent siblings who are less involved in the lives of their siblings with disabilities and therefore not connected to any sibling support. The majority of the sample included women, yet this reflects the gendered nature of caregiving in the literature (Levine et al., 2010). Also, the sample of respondents was fairly educated, with few minorities. Additionally, the research was limited because it did not include the voice of people with disabilities and relied on self-reported information of siblings. However, this study is one of the first that really looked at the voice of siblings of people with developmental disabilities.

Future Research

Although this research study helps fill a gap in the disability sibling literature, additional research is recommended that includes the siblings with and without disabilities and examines family dynamics beyond just the sibling dyad to see how whole families interact to support each other throughout their lifespans. The sibling experience of people with disabilities is especially important to capture to gain insight into the benefits of supporting people with disabilities. Also, intervention research should examine successful ways to negotiate the transition of caregiving roles from parents to nondisabled siblings to foster positive outcomes for the entire family. Additionally, further research should be done to capture the experiences of siblings who are not already connected to sibling support programs, such as reaching siblings through provider and parent networks, as well as getting the sibling experience in other countries.

Conclusion

The results of this research provided descriptive information about the support needs of adult siblings of people with developmental disabilities. The study helped give voice to the sibling perspective. The hope is that this information will be used by parents, professionals, and policymakers to address these concerns and support needs. These findings have implications for future policy and research. More opportunities are needed for siblings of people with developmental disabilities to connect, network, and share information and resources. Family support services must include siblings so that they are supported to be involved in the care of their brother or sister with disabilities in whatever way they choose. Siblings are an important resource for the disability field as future caregivers and untapped constituents in the disability policy movement. Additional research on siblings is important to increase the understanding of the supports that benefit siblings and their entire families.

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Author notes

Editor-in-Charge: Susan Havercamp

This research was supported by a grant from the National Institute on Disability and Rehabilitation Research, U.S. Department of Education (Grant H133B080009) to the Rehabilitation Research and Training Center on Aging and Developmental Disabilities: Lifespan Health and Function, University of Illinois at Chicago. The content does not necessarily represent the policy of the U.S. Department of Education, and endorsement by the federal government should not be assumed.

Catherine K. Arnold (e-mail: kkeiling@uic.edu), University of Illinois at Chicago, Department of Disability and Human Development, 1640 W. Roosevelt Road, Chicago, IL 60608-1336, USA; Tamar Heller, University of Illinois at Chicago; and John Kramer, University of Massachusetts, Boston.