This month, our Paralegal, Heather Geils, shares her experience as a Sibling.
Siblings of individuals with disabilities are frequently involved in their brother’s or sister’s life longer than anyone else in their family. This involvement evolves in myriad ways over time. Most parents are hopeful that a sibling will become a reliable and active part of their disabled child’s future.
As siblings become teenagers, their role in the lives of their brother or sister with disabilities changes. In some instances, siblings provide some respite for their parents by taking on different or more responsibilities.
By the time I was a teen, my parents were able to leave the house to do simple errands or not worry about childcare when school was out and we were home alone. I felt both proud and overwhelmed that my parents trusted me in this new way.
When adult siblings are involved in the later years of their disabled brother or sister, there is a shift from being a “peer” to “parent”. Parents may ask adult siblings to take on more parental roles in the lives of their brother or sister with disabilities, especially as their parents age. Siblings are now advocates, caregivers, legal representatives, guardians, trustees, planners, and service coordinators.
In my mid-twenties and into my thirties, I started transitioning into these new roles. During this time, my grandparents and father passed away. My mom began to rely on me as a sounding board when she made decisions for my sister. I feel an urgency to capture my mother’s knowledge in writing for fear the little nuances of my sister’s care will be lost forever. I try to not think too far into the future because it can feel overwhelming at times. I am grateful for my mother’s openness which allows me to learn my new role in my sister’s care.
Adult siblings may be caring for their disabled brother or sister, but also for aging parents and their own children all at the same time, as I am. Siblings may find it overwhelming to manage so many multiple responsibilities. Siblings may struggle with feelings of isolation if they did not establish strong connections to the special needs world earlier in life.
Parents who have a solid estate plan in place and provide written detailed care information can ease the burdens siblings face. Parents who properly (and comprehensively) plan can ensure that resources are available for respite or basic caregiving needs, which will grow when mom and dad are gone.
Open conversations, even though difficult, can make a world of difference for all involved. My mother has been very courageous in her openness, fear, and love. By having my mother’s guidance, I feel much more confident about managing my sister’s care and continuing to enjoy just being sisters too!
Takeaways for Parents to Proactively Plan Support for Siblings of Individuals with Disabilities
- Prepare a detailed Special Needs Trust. Parents can create a “dream team” to help siblings manage lifelong care with support.
- Write a Letter of Intent (“LOI”). A Letter of Intent includes directions, care plans, and an informative guide to your disabled child. Join Clancy & Associates’ complimentary Annual Letter of Intent Clinic on January 15, 2025 on Zoom.
- Establish Guardianship. Even if you, as the parent, have not had difficulty managing your child’s matters, your other child as a “sibling” probably will. Evaluate whether Guardianship is appropriate. If it is, set it up now for an easier transition for the sibling.
- Complete Your Estate Plan. This is advice for all! Do not wait. It will not get easier as time goes on.
- Involve Siblings Early and Often. Exposing siblings to caregiving and decision making early can help them feel a part of everyday life. Consider age-appropriateness with a good blend of ordinary family activities.
- Be sure Siblings have Support. There are many non-profits that arrange support, activities, and resources just for siblings of those with disabilities.
- Encourage Siblings to build their own lives. Champion your typical child’s hopes and dreams; encourage them to fledge and build their own lives and families.
- Spend Time As A Family!
