March 01, 2016

“Of all the forces that make for a better world, none is so indispensable, none so powerful, as hope.  Without hope people are only half alive.  With hope they dream and think and work.” –Charles Sawyer

Does special needs planning diminish hope?  Does it create artificial boundaries or set a ceiling on what your special needs child can accomplish?  No, although some parents feel that way.  When I’m speaking with clients and prospective clients about planning and I experience resistance, sometimes it stems from the belief on the part of the parents that by planning for their child’s future, by creating special needs trusts and other legal documents, they are placing limits on their child’s future.  Actually, it’s just the opposite.

What are we doing when we create a special needs plan?  We’re really creating a safety net.  We want something in place so that if our child stumbles and falls, he won’t hit the ground.  We want him to have the resources to get up and try again.  Maybe he just needs a few more years to mature and catch up socially.  Perhaps she needs more assistance—at least for a while—in order to be able to live independently.  Perhaps it is more than that, and all we can do is provide the best possible life for her.  If a new medical treatment or cure is discovered and our child becomes self-sufficient, the safety net can be removed.  Trusts can be dissolved, wills changed, investments and insurance redirected.

Hope must be tempered by reality if we are to be effective advocates for our children and siblings.  My brother, Scott, has Down syndrome.  He will turn 55 this month and is seven years into Alzheimer’s.  Today it is a disease that eventually afflicts individuals with Down syndrome if they live long enough.  Ten years from now, a cure—or partial cure—may be available.  Medicine and technology are advancing at such a rapid pace, who is to say?  For Scott, however, that will be too late.  Like my clients, I have to deal with the reality of today in order to help Scott.  My hope and my efforts are directed at providing the best possible care and environment for as long as necessary.

Most parents with a special needs child have a longer road in front of them, one that continues beyond their own lives.  On that road lies hope in the form of technological and medical advancements that we can’t even imagine today.  When Scott was born, the doctors told my parents that he would not live to see his 40th birthday, failing to anticipate the impending changes.  Fortunately, my parent’s planning and efforts provided Scott with a safety net that extended beyond their years, allowing him to enjoy a truly wonderful life.

Tomorrow, telemedicine, robotic cars, assistive technology, and much more will allow people with special needs to live longer and far more independently.

Hope is there.  Plan accordingly.