You’ve probably heard the age-old African proverb that states, “it takes a village to raise a child.” When it comes to raising a special needs child, nothing could be farther from the truth.
As someone who spends a great deal of time assisting the families of special needs children and dependents, there is a lot I can do to help those families prepare for the uncertainties that come with raising and caring for special needs children. But there is more to estate planning for special needs families than what can be addressed in guardianships, special needs trusts, and social security planning. No doubt those represent critical aspects of your loved one’s short and long-term well being, but they do not always address the numerous logistical complexities and specific people who will need to be involved in your child’s life on a day-to-day basis.
Speaking with special needs families day in and day out, it never ceases to amaze me just how many people are involved in the life of a special needs child specifically for the purposes of supporting that child in their special needs. From physicians, teachers and therapists, to parents, siblings, social workers and friends, it seems like you could dedicate an entire roll-a-dex to the task of keeping track of all the important people in a special needs child’s life.
So why does it take a village? You need only to think back to the time when you first found out that your child had special needs. For me, I remember feeling like the doctor’s office increased in size by about 4-fold, and I was standing in the middle of it completely naked. I’m not over exaggerating when I tell you that my heart rate went up for several days straight with the fear and anxiety of not knowing what was going to happen to my child, of not knowing what my life was going be like. All of the hopes, dreams and aspirations I had for my child all of a sudden were no longer possible, and all I was left with was questions, fear and loneliness. Those first few days represented just the start of a very long period of time where I felt like I was alone and that nobody understood how I felt or what I was going through. Over time though, things changed. We began moving forward, and I began to see the blessings that come from the way my son is. Instead of his weaknesses, I began to focus on his strengths. And through my wife’s hard work, we began assembling an ever-increasing group of people who were dedicated to helping my son reach his full potential.
As I look back on my son’s successes, the things that come to my mind include the many people who have helped my son along his path. Applying their unique skills and ways of caring, each one of these people have made a profound difference in my son’s life thus far. From bus driver that takes my son to school and and brings him home, to his occupational therapist he still gets excited to see on Monday mornings even though she moved on in her career months ago, to my friends who not only ask me how my son is doing every time I see them; I have come trust in the sustaining power of the love and support all these beautiful people have given and continue to give to my son. I have come to know that my son is not alone and neither am I. I have come to learn that it takes a village to not only raise a special needs child, but to raise the parent of a special needs child.
As an special needs planner, let me offer this as one of the most valuable things you can do to plan for your special needs child’s future: Always be cognizant of the village you are creating around your child. Your estate plan will handle and administer your assets, organize your affairs and appoint the necessary fiduciaries; but it’s the village you will have created by the time you’re gone that, when you are gone, will be there to love, support, and carry on for your special child.