An Open Letter to My Fellow Families of Children and Adults with Special Needs

This guest post is from Benjamin Rubin.

While all parents need to make legal and financial plans for the future, parents of children with special needs must plan for a much longer time period and must take into consideration many more details, laws and government regulations. My brother, Mitch, now 35, has Autism, and resides in a Clearbrook Group Home or CILA (Community Integrated Living Arrangement).

My father, my law partner and founder of Rubin Law, has always talked about what he calls the “parent’s prayer” and I want to begin by quoting this prayer:

“We all wish, no pray, that our child with special needs will have a long, happy and enjoyable life, BUT we wish, we pray that we live at least one day longer than our child does, and that we will not have to place the “obligation” or “responsibility” upon others. We hope, we pray, that we will always “be there” for our child. However, as difficult as it is to think about our dying before our child with special needs, we must! We have that obligation to our child with special needs, to our other children, to our chosen guardians, and to ourselves.”

As a sibling, and president of the Illinois Chapter of the national Sibling Leadership Network, I share a common sense of future responsibility with my fellow siblings and while we may not talk about it, it is in the back of all of our minds. We ask ourselves, what will happen when my parents aren’t here anymore? Who will care for my sibling? The importance of our parents planning for our brother or sister with special needs is even more essential to us and our future reality than to our parents.

NSPT offers services in Bucktown, Evanston, Highland Park, Lincolnwood, Glenview, Lake Bluff, Des Plaines, Hinsdale and Milwaukee. If you have questions or concerns about your child, we would love to help! Give us a call at (877) 486-4140 and speak to one of our Family Child Advocates!

Benjamin Rubin limits his law practice, as does the firm of Rubin Law, to Special Needs Legal and Future Planning for his fellow families of individuals with special needs. Benji serves as Vice-Chair of the American Bar Association’s Special Needs Planning Committee, is a member of both the Academy of Special Needs Planners and, by invitation, the Special Needs Alliance, the national not-for-profit association of special needs planning attorneys, is President of SIBS (Supporting Illinois Brothers and Sisters), the Illinois chapter of the national Sibling Leadership Network, which is an organization of adult siblings of individuals with intellectual disabilities, developmental Disabilities, mental illness, among other special needs, is a member of the Board of Directors of The Arc of Illinois, is a member of the Clearbrook Associate Board (Clearbrook is an agency serving over 7,000 children and adults with intellectual and developmental disabilities, one of whom is Benji’s brother Mitchell), is a member of the SEDOL (Special Education District of Lake County) Foundation Board of Directors, and serves on the Advisory Council of Encompass a joint venture that in partnership with Jewish Child & Family Services, Jewish United Fund, JVS Chicago, JCC Chicago, Keshet, and The Center for Enriched Living and Center for Independent Futures, seeks to provide adults with I/DD a full array of financially sustainable, community-based services and supports.

Having Mitchell as a brother profoundly shaped who Benji is today, and thus the type of law he chose to practice. His personal experiences as a sibling offer a unique perspective into the responsibilities that come with caring for a sibling with special needs. Now, as an adult, those sometimes present and future responsibilities he will share with his older sister regarding his brother’s care, are a concern that he shares with all brothers and sisters of individuals with special needs.