Abstract

In this study, the authors used a national, Web-based survey to examine female and male siblings of individuals with disabilities. More than 1,160 adult siblings completed a 163-question survey about themselves, their siblings, and their sibling relationships. Most respondents reported fairly close contact with their siblings and positive sibling relationships, good health, and benefits from being a sibling to a brother–sister with disabilities. Compared with men, women reported benefiting more from the sibling relationship. Relative to the U.S. population, female (though not male) siblings married later and divorced less often, and these women had their first child at later ages. Implications are discussed regarding future research and service needs.

Consistent with the general aging of the U.S. population, rising numbers of individuals with disabilities are living longer. Now thought to encompass over 700,000 individuals, the population of persons with intellectual disabilities aged 60 years and older is expected to reach 1.5 million by 2030 (National Center for Family Support, 2000). With an estimated 60% of such adults living with their parents in the family's home, it remains unclear who will care for these aging persons with disabilities when their parents can no longer do so. Given that adult service systems in most states are already overburdened, it becomes important, for societal and policy-related reasons, to learn more about siblings of adults with disabilities, because they will likely become the caregivers for their brothers–sisters with disabilities.

It is also important to consider the gender of these siblings. As Orsmond and Seltzer (2000) noted, the most involved siblings are usually female, with females (as opposed to males) more likely to report that they provide to their brother–sister with disabilities greater amounts of caregiving, companionship, and positive affect (see also Krauss, Seltzer, Gordon, & Friedman, 1996; Zetlin, 1986). The emotional involvement of these sisters is also not affected by the gender of the individual with disabilities, whereas brothers judge themselves to have more positive emotion, less negative emotion, and less worry in relation to their brother (as opposed to their sister) with disabilities (see also Seltzer, Begun, Seltzer, & Krauss, 1991).

Although many questions remain concerning female and male siblings of adults with disabilities, three seem particularly important to future policy discussions. The first concerns the nature of relationships that siblings have with their brother–sister with disabilities. As shown in several studies, most siblings of adults with disabilities spend a fair amount of time with their brother–sister with disabilities and experience fairly close sibling relationships (Orsmond & Seltzer, 2000).

A second question relates to the nature of these siblings' emotional and physical well-being. Although researchers used to think that they would be prone to depression or other psychological problems, these siblings now seem to be doing reasonably well in life. Indeed, it appears that any negative effects of being a sibling to an adult with disabilities are fairly minor (see Seltzer, Greenberg, Orsmond, & Lounds, 2005, for a review).

The third major question relates to these siblings' major life choices. At what ages do these siblings marry, how successful are they in their marriages, and when do they have children? To date, the only study of this issue used the Wisconsin Longitudinal Study's (WLS, as cited in Taylor, Greenberg, Seltzer, & Floyd, 2008) cohort of families of individuals who graduated from Wisconsin high schools in 1957, comparing siblings of persons with intellectual disabilities, with mental illness, and without disabilities. Among these three groups, who now average 63–64 years of age, Taylor, Greenberg, Seltzer, and Floyd found few differences in terms of the proportion of siblings who were currently married, who had been married more than once by their mid-60s, or in the numbers of children they had raised.

Although helpful, studies using the WLS data set cannot reflect the recent changes that have occurred in American families over the past several decades. Across that time period, the ages at which women have been marrying and having their first child have gradually increased, such that the median age of first marriage for women is 25.3 years compared with 20.8 years in 1970; men also increased in first-marriage age from 23.2 years in 1970 to 27.1 years in 2003 (U.S. Census Bureau, 2004). Divorce rates within the first 10 years of marriage have declined slightly, from their peaks among those who married in the late 1970s compared with those marrying from 1990 to 1994 (Martin, 2006). In addition, compared with less well-educated women, highly educated women have increasingly married and had their children at later ages and divorced or became single mothers less often (Martin, 2004; McLanahan, 2004). It remains unknown the degree to which these trends in marriage, divorce, and fertility relate to adult siblings of persons with disabilities.

To address these issues, in this study we used a Web-based survey to assess a large-scale, national sample of adult siblings. We had three goals for this study. First, beyond confirming that adult siblings are doing well, we compared female versus male siblings on their amount of joint contact and closeness. Second, we compared female versus male siblings on their well-being and health. Third, we described the life choices of siblings of individuals with disabilities, especially those related to marriage, divorce, and fertility. Considered together, this study provides important information about the personal and family functioning of female and male adult siblings of individuals with disabilities.

Method

Participants

Participants included 1,166 adult siblings of individuals with disabilities. As shown in Table 1, respondents were over 75% female and over 90% White. Compared with the overall U.S. population, respondents were also very well educated, with over a quarter of the sample having received one or more degrees beyond their bachelor's degree. In addition, the ages in the sample ranged from 18 to 85 years; there were over 100 respondents in each 5-year category between 20 and 49 years old. The sample resided in all 50 states plus the District of Columbia, with 29 states featuring 10 or more respondents. Examining this geographic distribution more closely, 7 among the 10 most populous U.S. states were also among the 10 states with the highest numbers of study participants (California, 8.6%; Florida 7.4%; Illinois, 6.7%; New York, 6.7%; Ohio, 5.9%; Texas, 4.6%; Pennsylvania, 4.0%; also in this survey's “top 10” were Virginia, 4.4%; Maryland, 3.3%; and Tennessee, 3.0%).

Table 1.

Demographics of Survey Respondents

Demographics of Survey Respondents
Demographics of Survey Respondents

In contrast to the gender distribution of siblings, more brothers than sisters with disability were present in our survey. The age range of these individuals varied widely, from childhood to beyond 80 years old (range  =  1 to 81 years). Disabilities included “mental retardation–developmental disability” (n  =  549); Down syndrome (n  =  284); autism (n  =  176); cerebral palsy (n  =  147); emotional disturbance or condition (n  =  87); health condition (n  =  81); sensory impairment (n  =  63); unspecified developmental disability (n  =  56); William syndrome (n  =  13); fragile X syndrome (n  =  9); and Prader-Willi syndrome (n  =  6); individuals could belong to more than one category. As shown in Table 1, almost half of persons with disabilities lived in their family homes and over 60% worked 20 or more hours per week; functional abilities also ranged widely. Over half of individuals with disabilities had some degree of significant emotional–behavioral problems, and 51.5% had significant health problems.

Procedures

In collaboration with the National Sibling Consortium, the Adult Sibling Survey was developed and revised. The questionnaire and the study itself were then approved by the Vanderbilt University institutional review board and presented to the Board of Directors of The Arc of the United States (Silver Spring, MD), after which the questionnaire was put onto a secure Web site of the Vanderbilt Kennedy Center. Recruitment of potential subjects was timed to coincide with the finalization of the Web-based survey. Beginning in late February 2006, news of the survey was disseminated through The Arc's list-servs and other computer-based information dissemination networks; in addition, a short article about the survey appeared in InSight, the national newsletter of The Arc (2007). News of the survey was also disseminated through the Web site of the Association of University Centers on Disability (AUCD), Don Meyer's Sibnet network, and several state developmental disability networks and newsletters. As survey responses accumulated, the Survey Gold program (Golden Hills Survey, Inc., 2006) was used to store survey responses, which were downloaded periodically to guard against computer malfunctions.

Although we received the majority of responses via computer, respondents could also fill out and return to us paper versions of the survey. Responding to both phone and e-mail requests, we mailed—in self-addressed, stamped envelopes—over 100 paper surveys to individual siblings and 250 to several professionals who ran sibling workshops or had access to families without high-speed Internet access. From these mailings, we received approximately 80 paper-based responses, which a research assistant then entered into the Web site.

The Adult Sibling Survey took 20 to 25 minutes to fill out. After going to the Web site's address, respondents saw a screen describing the study. After agreeing to participate, the respondent was then directed to the second screen, which contained a brief description of the survey and the survey itself. On completion of the survey, the respondent was thanked and answered that they had completed the survey. By pushing the completion button, the survey was submitted to the Web site. At this point, a third screen appeared, and respondents were asked whether they wanted to participate in future family research studies or to receive a summary of the questionnaire results. If they answered yes, respondents were then asked to fill out their name, address, phone number, and e-mail address. Throughout this process, all responses remained anonymous. Even those individuals who registered their names and contact information were not linked to their earlier responses.

Adult Sibling Questionnaire

Specifically designed for this study, the Adult Sibling Questionnaire comprised 163 questions divided into eight sections. Except for a final, open-ended section, responses generally involved clicking on one of the question's options, which involved responses that were either categorical (e.g., gender) or ranked on a Likert-type scale (1  =  never or not at all true to 4  =  always or totally true). Certain questions were borrowed from existing short-form measures; these are indicated in the appropriate sections.

Respondent information

Respondents were asked basic information about themselves (gender, age, ethnicity, educational level, marital status, number of children). Respondents also rated the importance of their roles as a parent, spouse, sibling of a brother–sister with disability, and son or daughter.

Brother–sister with disabilities

In addition to answering about their brother–sister's age, gender, type of disability, living arrangements, and amount and place of work, respondents rated the degree to which their brother–sister had significant health and emotional–behavioral problems. Respondents also rated the degree to which their brother–sister with disabilities was able to perform a variety of everyday functional tasks.

Parents and family of origin

In addition to asking about whether each parent was alive or deceased, this section asked about the ability of parents to care for the offspring with disabilities. Respondents also reported on the size of their family of origin, as well as where within the birth order both the respondent and the brother–sister with disabilities resided.

Joint activities and involvement

This section asked how often and for what number of hours per month the respondent was in contact with the brother–sister with disabilities. Respondents answered about how they were in contact; whether this amount of contact was too much, about right, or not enough; and if there were any reasons why the contact was not enough.

Transitions

Respondents reported whether, over the past 12 months, any of 10 major life changes had occurred to themselves, their brother–sister with disabilities, and/or their parents.

Sibling relationship and positive effects of relationship

Derived from the Positive Affect Index of relationship quality (Bengston & Black, 1973), respondents rated the degree to which they understood, trusted, respected, loved, felt close to and positive toward their brother–sister with disabilities (Cronbach's α  =  .91). Respondents also rated their closeness to their brother–sister with disabilities in terms of whether they were the closest of all siblings in the family to their brother–sister with disabilities, not the closest but close, or not close. Last, respondents rated the positive effects of their relationship and the degree to which being a sibling to a brother–sister with disabilities had changed whether they were empathetic, understanding of differences, compassionate, and aware of family dynamics. Respondents could rate that being a sibling made them less (1 or 2), the same (3), or more (4 or 5) likely to have any of these positive reactions. Cronbach's alpha for these questions equaled .86.

Respondent health and depression

Respondents were also asked to rate the general quality of their health (1  =  poor to 5  =  excellent) and whether they had felt depressed in the last week (five questions from the Center for Epidemiological Studies Depression Scale [CES-D]; Radloff, 1977). These measures of perceived health and depression have previously been used in studies of families of children with disabilities (Greenberg, Seltzer, Orsmond, & Krauss, 1999). For the respondents of this study, Cronbach's alpha for the CES-D equaled .79.

Results

Preliminary Findings

Sibling contact

Nearly half of respondents (48.4%) reported that their primary form of contact with their siblings was through visits to their brothers or sisters with disabilities, with another substantial proportion (36.4%) mainly in contact through phone calls. Less than 12% reported that their primary form of contact was through outings to the community (3.6%), e-mails (1.7%), or “other” (6.5%). Overall, 52.4% spent at least 5 hr per month with their brother–sister with disabilities, and 71.8% had at least weekly contacts.

Positive reactions to being a sibling to a person with disabilities

The majority of siblings reported that, as a result of growing up with their brother–sister with disabilities, they had somewhat or much more of the following: empathy (90%), understanding differences (94.4%), opportunities to learn (86.7%), compassion (87.2%), aware of family dynamics (84.7%), responsible person (83.2%), and aware of injustices (87.8%).

Sibling relationships of siblings of persons with disabilities

Siblings reported close personal relationships with their brother–sister with disabilities. On a 6-point scale, 95.5% of siblings felt that they either very much (5) or extremely (6) understood their siblings with disabilities, with 88%, 95.9%, 96.2%, and 93.9% feeling that they could trust, were fair toward, respected, and felt affection for their brother–sister with disabilities, respectively.

Health and mental health

Most respondents reported few negative effects regarding their well-being and health. Self-reported overall health was considered to be very good (39.5%) or excellent (28.6%), and across all but one of the five depression questions, the majority of respondents (60.5%–83.5%) reported that they experienced these feelings only rarely. For one question, “My sleep was restless,” the majority of respondents were split among the rarely (43.4%) and some or little of the time (31.3%) responses.

“Lone” Siblings Versus Siblings With One or More Nondisabled Siblings

Because 23% of our respondents came from families in which the adult sibling and the person with disabilities were the only two children, we compared these “lone” siblings with siblings from families in which there were two or more nondisabled siblings. The only area of difference involved the closeness of the relationship: On six of seven items, siblings who had another nondisabled sibling reported a more positive sibling relationship. They reported a more fair, respectful, close, affectionate, and trusting relationship with their brother–sister with disabilities. Summed across items, the overall relationship score was 34.00 (SD  =  6.52) for those siblings from larger families, and 32.26 (SD  =  7.52) for those who were the only nondisabled child, t(132)  =  3.85, p < .001, a significant (albeit small) difference favoring siblings from larger families. No differences were noted concerning the perceived benefits of being a sibling to a brother–sister with disabilities, nor did lone versus multiple siblings differ on either the number of contacts or hours spent with the brother–sister each month. There also were no differences in marriage, fertility, or divorce.

Female Versus Male Siblings of Persons With Disabilities

Female siblings spent more hours per month and had more frequent contacts with their siblings with disabilities. Whereas 54.6% of female siblings spent 5 or more hours per month, only 44.6% of male siblings spent 5 or more hours with their brother–sister with disabilities, χ2(1, N  =  1,161)  =  7.88, p  =  .005.

Within their families of origin, female siblings considered themselves closer to their brother–sister with disabilities. Compared with other siblings in the family, 53.1% of female respondents judged themselves to have the closest relationship with their brother or sister with disabilities, whereas only 37.1% of men considered themselves to have the closest relationship, χ2(1, N  =  806)  =  14.23, p  =  .003. Such differences in relationship quality did not emerge, however, when women and men rated the degree to which they understood, trusted, respected, loved, and felt close to their brother–sister with disabilities (all ps > .20).

The positive effects of having a sibling with a disability also showed differences favoring female siblings. As a result of having grown up with a brother or sister with disabilities, female (compared to male) siblings felt that they had grown more in terms of increased empathy, understanding of differences, opportunities to learn, compassion, awareness of family dynamics, as well as increased propensities to become a responsible person and to become aware of injustices (all ps < .0001). As shown in Table 2, all gender differences, while significant, involved small effect sizes.

Table 2.

Positive Reactions of Sibling Relationship According to Gender of the Sibling Without Disabilities

Positive Reactions of Sibling Relationship According to Gender of the Sibling Without Disabilities
Positive Reactions of Sibling Relationship According to Gender of the Sibling Without Disabilities

Although both men and women reported good physical and mental health in general, male siblings showed slight advantages in both areas. In rating their overall health on a 5-point scale, men rated themselves slightly healthier than did women (3.93 vs. 3.83), t(155)  =  2.42, p < .011. In addition, whereas the two genders showed no differences when all five CES-D (Radloff, 1977) depression questions were summed, women reported that, over the past week, they had more often experienced crying spells (women  =  1.26, men  =  1.09), t(155)  =  4.13, p < .001, and restless sleep (women  =  1.94, men  =  1.75), t(155)  =  2.63, p < .01.

Marriage, Fertility, and Divorce: Comparisons With U.S. Census Data

Age of marriage

As noted in Table 1, slightly less than half (49.7%) of participants in this study were married, with 40.8% never married. Given that the median age of the sample was 36 years and that, in the United States overall, median age of the first marriage is 25 for women and 27 for men (U.S. Census Bureau, 2004), siblings of persons with disabilities may be delaying their first marriage.

Comparing our percentages of never-married individuals in each of the U.S. Census's age groupings, women, but not men, appeared to be delaying their first marriages. Although from ages 20 through 40 years the percentages of never-married women declined in successive 5-year periods, higher percentages of female siblings of brothers–sisters with disabilities (vs. U.S. women overall) had never been married in the 20- to 24-year age span, χ2(1, N  =  10,027,145)  =  8.70, p < .003; in the 25- to 29-year age span, χ2(1, N  =  9,484,156)  =  7.91, p < .005; and in the 30- to 34-year old age span, χ2(1, N  =  10,097,082)  =  13.16, p < .0001. Such differences did not appear, however, in the 35- to 39-year-old group (p  =  .385) or from 40 to 49 years (p  =  .10; see Figure 1). Among male siblings, the never-married rates did not differ from overall U.S. male rates during any 5-year period from 20 through 40 years of age (ps > .30).

Figure 1.

Percentage of all women who had never married in each group, by 5-year age ranges.

Figure 1.

Percentage of all women who had never married in each group, by 5-year age ranges.

Because our sample of female siblings was predominantly White and well-educated, we reran these analyses for each characteristic separately. Compared with U.S. White females, the White, female siblings of individuals with disabilities remained significantly more likely to never have been married from 20 to 24, 25 to 29, and 30 to 34 years and showed no differences from 35 to 39 years (although differences again emerged in the 40–49-year-old group). The U.S. Census's age breakdowns differed when considering education levels, but the basic pattern was again found when comparing females siblings with high levels of education (i.e., BA or above) versus highly educated U.S. females in the general population. The two groups did not differ in their percentages of never-married women during the 18–24-year age range, differed significantly at both the 25–34-year and 35–39-year periods, and did not differ from 40 to 49 years. Compared with White and highly educated U.S. women in general, then, greater percentages of never-married female siblings occurred mostly at the younger ages, with similarly low percentages of never-married female siblings occurring at ages near or above 40 years (see Table 3).

Table 3.

Numbers of Women Never Married at Different Ages for White and Well-Educated Women, U.S. Women Versus Female Siblings of Persons With Disabilities

Numbers of Women Never Married at Different Ages for White and Well-Educated Women, U.S. Women Versus Female Siblings of Persons With Disabilities
Numbers of Women Never Married at Different Ages for White and Well-Educated Women, U.S. Women Versus Female Siblings of Persons With Disabilities

Fertility

In this sample, 54.9% of female respondents reported that they had no children. As Table 4 shows, higher percentages of female siblings (compared with U.S. females) reported having had no children at all age-groupings from 20–24 through 40–44 years (the last age group reported). When analyses in U.S. and sibling groups were restricted to only those participants who were married, significant differences were noted from 20 through 39, but not during the 40–44-year-old age group (which showed virtually identical percentages of women who had no children).

Table 4.

Number of Women Who Have and Have Not Had Children at Different Ages, U.S. Women Versus Female Siblings of Persons With Disabilities

Number of Women Who Have and Have Not Had Children at Different Ages, U.S. Women Versus Female Siblings of Persons With Disabilities
Number of Women Who Have and Have Not Had Children at Different Ages, U.S. Women Versus Female Siblings of Persons With Disabilities

Divorce

Although as a group these female siblings entered into marriage and had children at later ages than their peers across the country, such women were also slightly less likely to divorce. Comparing female siblings aged 20 through 49 years to similarly aged women in the U.S. population, divorce rates were slightly lower (7.21%) in the sibling sample versus in the U.S. overall sample (10.24%), χ2(1, N  =  62,745,499)  =  4.98, p < .05. Such differences were also noted when comparisons were limited only to White women in the sibling (7.45%) versus U.S. Census (10.52%) group, χ2(1, N  =  49,378,443)  =  4.45, p < .05, and were marginally significant when analyses were limited to only highly educated women (sibling group  =  7.28%; U.S. group  =  9.73%), χ2(1, N  =  19,084,467)  =  3.18, p  =  .075.

Discussion

In modern American society, siblings of individuals with disabilities are increasingly fulfilling important caretaking roles for their brothers and sisters with disabilities. As one of only a few studies to examine functioning of these individuals, this study provides information about the relationships, health, marriage, and fertility of these siblings.

This study had three main findings. First, like other studies, we found that the siblings included in our sample, at least as judged by their own self-report, were doing relatively well. In this survey, most respondents reported that they enjoyed close relationships with their brother or sister with disabilities, visited or called often and spent time in this relationship, and benefited psychologically from being a sibling to a person with disabilities. In addition, most respondents reported themselves to be in good or excellent health and experienced few depressive symptoms. Like most studies performed within the past decade, this study confirmed that adult siblings of individuals with disabilities seem to be doing fairly well in life (see Seltzer et al., 2005; Stoneman, 2005 for reviews).

Second, we found both more sibling contact and closer sibling relationships when the adult sibling was female. Within families with more than one sibling without disabilities, women more often than men considered themselves to be closest to the offspring with disabilities. In addition, although men and women did not differ on Bengston and Black's (1973) Positive Affect Index of relationship quality, women felt that they had more strongly benefited from being the sibling to a brother–sister with disabilities. This finding of increased benefits for female siblings might, however, need to be tempered somewhat, as we also noted that men reported slightly better physical health and fewer instances of depression indicators (crying spells, restless sleep). Although our depression findings may relate to the general finding of greater depressive symptoms among women (Wolk & Weissman, 1995), the entire issue of the health and well-being of female versus male siblings requires more extensive study.

Third, compared with American women in general, we found significant differences in marriage, childbearing, and divorce among female siblings. Compared with U.S. Census figures, female siblings of persons with disabilities showed higher percentages of not marrying, at all periods from their 20s until the mid-30s, a difference not found for male siblings. Such differences remained when analyses were limited to only those women who were White or were highly educated.

This study presents a more nuanced picture of adult siblings of individuals with disabilities. Until now, most research has concerned the potentially negative effects of having a brother–sister with disabilities (Rossiter & Sharpe, 2001). Recently, however, studies have focused on increased empathy, tolerance for differences, and other, more positive effects that might occur (Taunt & Hastings, 2002). Consistent with this second line of work, we too found that most siblings were healthy and not depressed, in close relationships with their brother–sister with disabilities, and benefiting from their role as a sibling to an individual with disabilities. Male versus female siblings also differed on some of these outcomes, with the two genders reporting equally close sibling relationships, even as women spent more time with and reported more benefits from being the sister to a person with disabilities.

At the same time, female siblings differed markedly from their U.S. age peers on several important life choices. Most compelling were the differences related to marriage and having children. Even when equating on ethnicity–race and education levels, female siblings, especially at the youngest age levels, were more often unmarried and had not had children. Although these differences could represent either a delay in or a permanent forgoing of marriage and children, other recent studies have reported no differences in sibling marriage rates by the time respondents reach late-middle age (Taylor et al., 2008). Female siblings in our study also had children later during their childbearing years and women (but not men) showed slightly lower rates of divorce. Compared with other American females, female siblings of brothers–sisters with disabilities seemed to be delaying marriage and children and divorcing less often.

Although it remains unclear why such differences existed, one explanation may relate to a cautious stance toward major life decisions. Throughout the literature, it has been shown that female siblings most often fulfill future guardianship and caretaking roles for the brother–sister with a disability (Krauss, Seltzer, Gordon, & Friedman, 1996; Zetlin, 1986). Anticipating such future caretaking responsibilities, female siblings may need to be more careful when entering into marriage or having children. Unlike their nondisabled brothers, who will usually not be responsible for the care of the brother–sister with disabilities, these women have more to think about than just themselves. They may also feel that the costs of making an “incorrect” marital choice may be higher, given that they and their brother–sister with disabilities will both be affected.

Conversely, these marriage and childbearing findings may reflect an already-existing cost of being the eventual caregiver for a brother–sister with disabilities. In an analogous study, Mauldon (1992) examined whether mothers of children with disabilities and chronic health problems (grouped together) experienced higher rates of divorce and longer postdivorce intervals until remarriage. Particularly after the child's preschool years, parents of children with disabilities and chronic health conditions were more likely to divorce, although Mauldon (1992) noted that the length of time until remarriage did not relate to the presence or absence of the child with disability–chronic illness. Although we need to know more about the reasons for our female siblings' life choices, delayed marriage and childbearing may relate to both internal and external factors.

Such findings also fit within the current movement to increase research attention to the basic characteristics, life choices, and needs of adult siblings of persons with disabilities. Over the past few years, a national sibling leadership network has developed “to provide siblings of individuals with disabilities the information, support, and tools to advocate for their brothers and sisters and to promote the issues important to them and their entire families” (Heller et al., 2008, p. 5). As a part of that movement, Heller and Kaiser (2008) surveyed the state of the art in research on adult siblings. They concluded that the field knows little about the adult-life transitions of these siblings. Beyond the basic information presented here, we also need to know the reasons for such life choices and how such choices interact with overseeing the care of the brother–sister with disabilities. Most important, we need to consider how current or proposed practices or policies might help these siblings to attain a more balanced life, one that allows adult siblings simultaneously to care for their brother–sister with disabilities and to enjoy full family and work lives. With its focus on the present life functioning and major life choices of adult siblings of individuals with disabilities, our study provides a starting point for such future policy discussions.

It is also important to acknowledge this study's limitations. Most notable, even as the American population is changing rapidly in its ethnic–racial composition, this study's respondents were overwhelmingly White. Similarly, the Web-based format of this study likely precluded full participation from siblings who were poorer or less educated. In addition, this study was cross-sectional in design, which may have led to important cohort effects. For example, persons with disabilities who were in their 30s or older—that is, those born prior to passage of P.L. 94–142 (the Education for All Handicapped Children Act) in 1975—may well have received fewer services, more segregated educations and lower parental (and sibling) expectations than persons who were younger than 30 (and born after P.L. 94–142). Although we speak of “delays” in marrying and in having children, this study provides only a cross-sectional snapshot of individuals of different ages; depending on when they were born, individuals with disabilities experienced different histories of inclusion and both they and their siblings likely experienced different amounts and types of interactions with peers, teachers, and social service and medical professionals.

Despite these limitations, this study adds to our understandings of adult siblings of persons with disabilities. Like prior studies, we too found that siblings of persons with disabilities reported themselves as doing fairly well, with mostly positive sibling relationships and good physical and mental health. Female (as opposed to male) siblings were most often the closest in the family to their brother–sister with disabilities and benefited more from that relationship. Compared with other American women, female siblings in our cohort married and had children later but also divorced less often. As Americans with disabilities live longer lives and increasingly rely on their nondisabled siblings for care and support, we need to better understand the overall functioning, sibling relationships, and life choices of female and male siblings of persons with disabilities.

Acknowledgments

We thank Mike Coburn, Sue Swenson, Elise McMillan, and the Board of Directors of The Arc of the United States for promoting this study. The members of the National Sibling Research Consortium were particularly helpful in designing this questionnaire; special thanks go to Marsha Seltzer, Gael Orsmond, Laraine Glidden, Carolyn Graff, Ann Kaiser, Ruth Roberts, and Elisabeth Dykens. We also thank Julie Lounds Taylor and Elisabeth Dykens for comments on earlier drafts of this manuscript. This study was supported by a grant from The Arc of the United States, as well as the National Institute of Child Health and Human Development (Grant P30HD 15052). The views expressed are solely the responsibility of the authors and do not necessarily represent the official views of any of the funding agencies. Reprint requests should be addressed to Robert M. Hodapp, Vanderbilt Kennedy Center and Department of Special Education, Peabody Box 228, 40 Appleton Place, Nashville, TN 37203 (robert.hodapp@vanderbilt.edu).

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Editor-in-Charge: Marji Erickson Warfield

Robert M. Hodapp, PhD, Vanderbilt Kennedy Center for Research on Human Development; and Department of Special Education, Peabody College, Vanderbilt University. Richard C. Urbano, PhD (richard.urbano@vanderbilt.edu), Vanderbilt Kennedy Center for Research on Human Development; and Department of Pediatrics, Vanderbilt University Medical Center, 230 Appleton Place, Box 40, Nashville, TN 37203. Meghan M. Burke, MS, Vanderbilt Kennedy Center for Research on Human Development; and Department of Special Education, Peabody College, Vanderbilt University.