The Impact of having a Sibling with a Disability

“We know that parents of special needs children sometimes need extra support and encouragement, but we often forget that special needs siblings also daily give of themselves, their time, attention, and love. They need support and encouragement too.”

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).

Making future plans for an adult brother or sister with developmental disability 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 developmental disability. 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 developmental disability 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 I developmental disability, 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.

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-Disability Support Pension, Support from the National Disability Insurance Scheme, Medicare, etc.

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 Developmental disability 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 developmental disability 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?

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.

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 developmental disability (Burke et al., 2019).

In situations in which the individual with developmental disability 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 developmental disability 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 developmental disability, 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).

Caregiving becomes an increasing issue, especially as parents can no longer provide care. Despite the life-long issues around siblings of adults aging with developmental disability, 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 developmental disability, 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 developmental disability while also caring for an aging parent (Heller et al., 2008).

Siblings with and without Developmental disability 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 Developmental disability 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.