If you have siblings, or if you are a parent to more than one child, you know that pretty much all siblings have a love-hate relationship. Longtime fictional siblings from different stories include Beezus and Ramona; Peter and Fudge; Jason, Paige and Peter; Charlie Brown and Sally as well as Lucy and Linus. They were all in love-hate relationships. For the most part, actual siblings grow up in a similar context. They have to deal with some of the same stressors, whether it is the teacher that gives too much homework, the little league coach that makes you run all the time, or the big kids down the street that make you nervous. These siblings took the same cool vacation to the Grand Canyon, or the not so cool one to the family cabin that still needs to be hyped up to peers. Siblings provide both built-in competition and built-in companionship. As you grow up, siblings often go in different directions but may share some of the common challenges of aging. For many siblings, that will include caring for one or both of their elderly parents. For some siblings, it will mean caring for each other. This is particularly likely when one sibling has a disability.
While most parents who have a child with a disability plan to live forever, not one of them has figured out how. Most parents of children, even adult children, with disabilities help to manage some aspects of their child’s support, whether that is providing physical person care, emotional and behavioral support, or medical and financial management. And no matter how good the child’s support workers and case workers are, it is hard for a parent to imagine that paid staff alone will ever provide the care that their child-turned-adult with a disability will need. One or more siblings are the obvious alternative. A sibling is a real peer and is likely to be around long enough to see the job through to completion. And while a sibling without a disability will not totally understand the needs of sibling with one, there is, at least, history and context to work with beyond what the paid staff will ever be able to access. But parents can feel ambiguous about tapping a sibling to be the “future them”. A sibling will have his/her own life and perhaps a partner and/or a new family to care for; and all of these come with the siblings’ own professional, financial and logistical commitments. While the parents would be overjoyed if one or more siblings without a disability stepped up willingly to the plate for the sibling with a disability, they don’t want to guilt them into doing so or make the responsibility of helping out the sib with a disability a requirement.
As a financial planner, who works with people with disabilities and their families, and as the former executive director of a agency that provided support services to adults with intellectual and developmental disabilities, I have seen siblings play a key role. I see siblings playing a key role, not only in advocating for and providing input to develop effective services and supports for the one with special needs, but also in easing the transition from life-with-Mom-and-Dad to life-after-Mom-and-Dad. Thus, I’d like to share a few thoughts on how to bring siblings deeper into the circle of support without overwhelming them.
Start early and gradually. By the time your child with a disability ages out of school, you parents may have spent an entire 21 years learning school supports as well as some aspects of Social Security and Medicaid. You may have attended conferences and workshops, you certainly attended a myriad of Individual Education Plans (IEPs), and you probably did a boatload of research and may have attended a support group. For the same duration, the sibling had the day-to-day experience of helping his/her sib, but not the full responsibility of understanding “the system(s)”. If your child with a disability has a micro-board, encourage the sibling to be a member. Ask the sibling with the disability to invite the sibling without a disability to her/his IEP or Individual Support Plan (ISP) meetings. If your child is already receiving adult services via an agency, encourage the sibling either to volunteer at agency events or to join the junior board, if the agency has one. In these ways, the sibling has more exposure to his/her sibling’s daily challenges. Also, consider involving the sibling in a Planning Alternative Tomorrows with Hope (PATH) or Making Action Plans (MAPS) process.
Show and tell important documents. When the sibling is of an appropriate age, begin to introduce him/her to the documents you have created to support and guide the future life for the child with a disability. If you have created a Letter of Intent for your child with a disability, give the sibling a chance to read it and to get to know the things about the sibling with disability that he/she may not already, such as the contact information for doctors, therapists and case managers as well as details of the programs that the person currently attends and programs that the parents have researched and are considering for the future. If you have not already created a letter of intent, it is a good idea to do so and to involve the sibling without a disability. It is a good idea for the sibling to know details of the special needs trust and the parts of parental wills and/or parental or family trusts that will fund the special needs trust. If the sibling without a disability is not a successor trustee, s/he may still be called up on to advise the trustee, and it will certainly give the sibling a peace of mind to know that s/he will not need to worry about the financial welfare of the sibling with a disability. If the child with a disability has an ABLE account and needs help managing the funds, it might be good for the sibling to at least know the login information.
Connect the sibling with support. It is often hard and can be intimidating to be the sibling of a person with disabilities, who has complex care needs to coordinate. Even if the sibling has become involved in managing some aspect of the disability support services, and even if s/he is familiar with the key documents, the sibling may feel unready to take over any portion of informing or managing care. Other siblings are one of the best resources for siblings to understand how to support their brother or sister with a disability, while still maintaining their own families and lives . Two excellent groups for this purpose are the Sibling Leadership Network and, in my home state of Illinois, Supporting Illinois Brothers and Sisters (SIBS). Check what your home state has to offer.
No matter how much of a love-hate relationship your child with a disability may have had with her/his sibling without a disability, they each still care about and need each other. Even if the sibling without a disability has a very busy life, there are always ways s/he can become involved and resources that s/he can rely on to learn more. Ultimately, the person with a disability will fell relieved that her/his sibling is involved and the sibling will appreciate the resources to support her/his involvement.