Raising a child with a disability presents unforeseen challenges. One of many is navigating the experience of his or her sibling(s). You may have heard the expression Glass Children which captures the sentiment of many siblings of children with disabilities. Specifically, the word glass refers to how invisible they may feel as parents funnel time, money, and emotions into the sibling who has demanding and expensive needs.
We recognize and honor this feeling. This article is intended to address the dynamic within families and the transfer of responsibility that will occur from parents to siblings as the primary caregivers of the sibling with a disability.
In what could be seen as a juxtaposition, the siblings who often feel like glass growing up can end up boomeranging back into the family in the central and critical role of primary caregiver of their sibling. As such, we propose the term Glass Boomerang to refer to these brothers and sisters.
In my line of work, I speak with many parents of children with disabilities. One of my associates, John (a Glass Child himself), recalls growing up with a sibling with a disability is both challenging and rewarding. He recalls life being fast-paced with long-term planning pushed to the back burner. It wasn’t until he went off to college that John began to think about his role as a Glass Boomerang. He realized that his parents would someday no longer be able to care for his sister and that he and his siblings would be called upon to support her physically, emotionally, and financially.
The transfer of responsibility will be perfectly imperfect. There will be bumps and bruises along the way. The question now becomes: What can parents do, proactively, to ensure a smooth(ish) transition of care to the Glass Boomerangs? This transfer is not a matter of if but when and how. Below are a few suggestions for families to consider as they begin this work.
- Plan, plan, plan: having legal documents is imperative. Even a properly drafted Supplemental Needs Trust and Will cannot address of the social, emotional, and financial aspects of the transition of care. In other words, much of the day-to-day details fall outside the scope of legal documents.
- Know the costs: the planning process should include the needed financial support and be adjusted for inflation over time.
- Understand funding sources: individuals with special needs can receive funding, waivers, and health care from a variety of government agencies. For example, with the Social Security Administration, we have SSI, SDI, DIB, DWB, and DAC. Siblings need to understand what these are and how to consider each one in financial planning.
- Start the discussion right now: waiting will only delay a family’s ability to adjust and consider the needs of all parties involved.
- Parents – memorialize your efforts: parents serve in many roles: advocates, nurses, physical therapists, etc. A daily journal can document these many roles and allow future caregivers to continue the standard of care the parents worked so diligently to establish and maintain.
To our Glass Boomerangs, long-term planning includes you, your feelings, and your boundaries. For example, supported living could be concerning to you if you are married with children in your home. We need to plan around and accommodate your life style.
We respect that planning for life’s unscripted moments is never easy. With that said, sustainability needs consistency. We encourage our families to have an open dialogue right now with all loved ones involved to plan for hopes and dreams.