Overview

Impact Feature Issue on Siblings of People with Intellectual, Developmental, and Other Disabilities

Siblings of People with IDD: The Adult Years

Author(s)

Zach Rossetti is Co-President of the Massachusetts Sibling Support Network, and Associate Professor, Wheelock College of Education & Human Development at Boston University, Boston, Massachusetts. He may be reached at zsr@bu.edu.

Hillary Dunn Stanisz is Co-President of the Massachusetts Sibling Support Network, and a disability rights attorney, in Boston, Massachusetts. She may be reached at hillarydunn24@gmail.com.

John Kramer is Clinical Assistant Professor in the Department of Occupational Therapy, University of Florida, Gainesville. He may be reached at john.kramer@phhp.ufl.edu.

Sibling relationships through adulthood prove to be unique and important. Adult siblings tend to follow a life course pattern of decreasing proximity and support in early adulthood, but with consistent—though less frequent—contact, resulting in long-term stability and increasing contact and support (for those in close proximity) in late adulthood (White, 2001). Sibling relationships in late adulthood frequently involve high levels of warmth, low levels of conflict, and a reciprocal significance in each other’s lives despite the earlier disengagement (Stocker et al., 2019). In short, sibling relationships may prove to be the longest of our lives, the most durable, and important sources of support as we age.

Siblings with and without intellectual and developmental disabilities (IDD) often engage in such relationship patterns. There are also additional experiences and considerations when IDD is present. Siblings without IDD frequently think about their brother or sister with a range of accompanying emotions including concern, guilt, and joy (Rossetti & Hall, 2015). They may wonder how their sibling is doing and feel guilty for not seeing him or her enough, worry about how they would care for their sibling when their parents no longer could, and smile thinking of their inside jokes. Additionally, relationships between siblings with and without IDD may take on a hierarchical nature with the sibling without IDD providing more support to their brother or sister (Avieli et al., 2019). It is also important to understand that adult sibling relationships are nuanced and cannot just be characterized as positive or negative; sibling involvement can be formal and informal, needs-focused and social, stressful and enjoyable (Avieli et al., 2019; Rossetti et al., 2018). Further, perspectives of adult siblings change over the lifespan depending on family dynamics and life situations (Hall & Rossetti, 2017).

Early Adulthood: Disengaging for the First Time

It can be difficult when adult siblings with and without IDD begin to disengage and see each other less frequently than they did during childhood for the first time in early adulthood. This usually happens when the sibling without IDD goes away to college or moves out of the family home for their first job. For example, a woman in her early 20s said of her younger brother with autism, “I miss him like crazy when I go back to college” (Rossetti & Hall, 2015, p. 12). Notably, there are now more post-secondary education programs available to individuals with IDD as well. Some siblings without IDD will want to stay close to their sibling with IDD (e.g., within 1-2 hours, in the same state), and others may want to move as far away as possible. Regardless, this life change typically results in feelings of guilt for the sibling without IDD (Rossetti & Hall, 2015; Shivers, 2019).

Transitioning from one’s original family to starting a new family of one’s own represents another life stage during which sibling distance grows. For example, a 52-year-old woman with a younger sister with cerebral palsy and intellectual disability shared, “I wish I could spend more time with her, but the demands of my husband, children, and job make it difficult” (Rossetti & Hall, 2015, p. 12). There may be additional considerations as well. Siblings without IDD may delay romantic relationships and marriage if they are involved in supporting their sibling. Many siblings choose their partners using criteria related to their brother or sister with IDD. For example, one sibling stated, “I know I can't marry anyone who won't be supportive and accepting of the fact that one day I/we will be responsible for my sister” (Seltzer & Krauss, nd, p. 8). Adult siblings will likely pay particular attention to the relationship between their brother or sister with IDD and their children. For example, one sibling’s daughter called her uncle with IDD “Unc,” which was short for Uncle Todd, and always gave him a fist bump when together. Some siblings with and without IDD regularly spend holidays and vacations together, which requires additional planning and family or marital negotiations.

Middle Adulthood: Future Planning and Caregiving

Regardless of disability, sibling contact in middle adulthood may increase due to divorce and decrease with additional children, new marriages, parent involvement, and physical distance (White, 2001). For siblings of individuals with IDD, the most critical need at this time is future planning for the transfer of caregiving roles from aging parents to siblings; yet, few families make such plans or involve siblings (Arnold et al., 2012; Burke et al., 2015; Heller & Kramer, 2009; Holl & Morano, 2014).

Future Planning

Making future plans for an adult brother or sister with IDD can be challenging to talk about. Sometimes siblings and parents do not know how to approach the topic with each other. Sometimes parents and siblings have conflicting ideas about what will be best for the individual with IDD. Parents may focus on safety needs and consistency of support while siblings may focus on quality of life and be more willing to take risks. And the individual with IDD has their own ideas that may not be in accordance with the siblings or parents.

Despite the difficulty of this topic, it is best to address future planning in a proactive manner, rather than reacting to a crisis. An important planning step for parents that could serve as a starting point for future planning discussions is completion of the Letter of Intent. There is no required format, but it should include parents’ desires and concerns about the life of their son or daughter with IDD, as well as guidance to future caregivers, including siblings, about what works for their child. It should also include medical information, a “who’s who” in the individual’s life, and the locations of all pertinent documents and important records.

Financial Planning

Many siblings fear that they will have the financial obligation to care for their brother or sister, in addition to caregiving (directly or indirectly) and legal responsibilities. Although often difficult for families, discussing available resources and the financial plan is a vital aspect of proactive future planning. Siblings need to know the government benefits their brother or sister is receiving and may be eligible to receive in the future for income (Supplemental Security Income-SSI, and Social Security Disability Insurance-SSDI) and health care (Medicaid and Medicare). Siblings need education about the complex rules governing these programs.

Families should also address whether there is a special needs trust. Often an important financial and legal planning tool, many parents create a special needs trust to allow the individual with IDD to receive an inheritance or other resources without jeopardizing eligibility for government benefits. Siblings often want their parents to create such a trust. Parents and siblings need to understand that if a special needs trust does not exist, and the individual with IDD receives any inheritance or other resources directly, the loss of some, if not all, government benefits is quite possible. Furthermore, if parents plan to leave everything to the siblings to care for their brother or sister in lieu of creating a special needs trust, they should discuss obstacles that may arise. For example, if a sibling inherits financial resources to care for her brother or sister and subsequently gets divorced, would the ex-spouse have access to these resources?

Caregiving and Other Sibling Roles

Adult siblings may engage in a variety of formal and informal roles including caregiver, friend, advocate, legal representative, mentor/role model, leisure planner, and informal service coordinator (Hall & Rossetti, 2017). Some informal roles include shopping for clothes or gifts and ensuring their brother or sister is included in family events and social activities when the parents are gone. Other roles are formal, and some require a lawyer to assist with wills, trust documents, health care proxies, or other legal matters. Depending upon the support needs of the individual with IDD, siblings may engage in formal roles such as those listed in Table 1.

Table 1. Examples of Formal Roles

Role

Definition

Guardian or Conservator

Court-appointed and makes decisions about the personal affairs of an individual who is not able to make such decisions and/or handles financial affairs for an individual who is not able to make informed financial decisions and has resources other than government benefits (e.g., SSI). Terminology and laws vary by state.

Representative Payee

Appointed through the Social Security Administration (SSA) when a person receiving SSI or SSDI is unable to manage these funds. The “rep payee” manages only the SSA benefits, not all finances.

Health Care Agent

Designated through a Health Care Proxy, a legal document executed by a competent individual, to make health care decisions if the individual becomes unable to make or communicate such decisions.

Trustee

Responsible for managing a trust set up for the benefit of the individual with IDD.

Advocate

Can be informal or formal, but, when formal, appointed by the individual with IDD to act as their advocate in educational, adult services, or some health related matters.

Supporter for Supported Decision-Making

Assist the individual with IDD so they can make their own decision. A supporter is designated by the individual with IDD through a supported decision-making arrangement that is an alternative to guardianship.

This is not an exhaustive list of formal/legal roles.

Siblings most commonly become involved in caregiving (directly or indirectly) as their parents age or pass away, yet they are frequently unprepared for this immense role because family supports typically do not include siblings (Arnold et al., 2012; Holl & Morano, 2014). Siblings need to acquire the technical knowledge parents have for navigating disability benefits and systems, as well as conducting daily care (e.g., health issues, positive behavior supports, routines). Even when siblings take on advocacy roles, they report a need to increase the self-determination capacities of their brother or sister with IDD (Burke et al., 2019). In situations in which the individual with IDD requires a guardian, siblings may need education about the role of the guardian, the steps required to execute that through the probate court, and options other than the sibling serving as guardian. In other situations in which the individual with IDD needs some decision-making and other support but guardianship may not be necessary, siblings may need education about alternatives to guardianship. These alternatives include supported decision-making as well as utilizing tools such as a health care proxy, durable power of attorney, or joint bank accounts.

Because of the unique challenges they face caring for aging parents, their own children, and also their siblings with IDD, sibling caregivers have been identified as the “Club Sandwich Generation.” As a result, sibling caregivers in middle adulthood tend to put others’ needs ahead of their own (Holl & Morano, 2014). Thus, adult siblings have consistently expressed the need for information and training on how to assume caregiving responsibilities, as well as support groups to network with other siblings (Heller & Kramer, 2009). See Table 2 for some examples of resources for adult siblings.

Table 2. Adult Sibling Resources

Late Adulthood: Reconnecting and Aging

Caregiving becomes an increasing issue, especially as parents can no longer provide care. Despite the life-long issues around siblings of adults aging with IDD, scholarly research on the transition in care from parent to adult sibling is limited. There is little information about how sibling caregivers adapt to their new roles when parents are no longer able to care for an adult child with IDD, and a sibling becomes the primary caregiver. For sibling caregivers, life-course transitions associated with their own aging may be complicated by the added obligations associated with securing support for the sibling with IDD while also caring for an aging parent (Heller et al., 2008).

Siblings of people with IDD, however, have roles that are not limited to caregiving. For example, siblings build reciprocity and social capital through sibling relationships and enacting different family roles (Kramer et al, 2013). Family capital and reciprocity are created through shared experiences and co-participation in activities and leisure experiences. As brothers and sisters age, the importance of their relationship with each other increases as parents pass away and can no longer provide care. Sibling relationships, at the end of life, serve as a primary way people remember and reminisce about their lives. They engage in leisure activities together (Kramer et al., 2013), and they also serve in a similar function, though perhaps more egalitarian, than their parents did around daily support and ongoing needs as siblings with IDD age.

Conclusion

Siblings with and without IDD engage to some degree in the same life course patterns and stages of all siblings. In addition, they experience unique opportunities, benefits, and challenges across the life course. Notably, there is a clear need for siblings without IDD to engage in timely future planning and adequate preparation for future caregiving roles. Siblings with and without disabilities are siblings first, however. The ultimate importance of the sibling relationship lies in that reciprocal connection siblings develop over time within their shared familial contexts.

References

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