Ever think about how you will provide for your child with special needs once you are no longer around? Over the Thanksgiving weekend, my wife and I established a special needs trust with our son Andrew, now age 18. I strongly encourage any family with a child who has significant special needs to consider establishing such a trust.
To effectively design and implement such a trust, you need an experienced attorney who specializes in such work. We located such a firm and attorney by word of mouth. We have information on possible legal resources to assist with such trusts on CHADD’s National Resource Center on AD/HD Web site; see Finding an Attorney and also the Other Web Sites section on the main Living with AD/HD page. And there is a national organization that is devoted to this subject, the Special Needs Alliance.
Our resources will go into a special trust, the sole purpose of which is to promote Andrew’s welfare. The trust needs flexibility as circumstances and eligibility and rules governing public assistance programs change. We don't know the circumstances Andrew will face. We don't know if public programs will be helpful or not. The only real concern we have is the need to have a dependable and knowledgeable trustee. Currently we have one—my wife's youngest sister. This is great for now, but Andrew has no brothers or sisters. At some point, health and aging may mean that we will have to find another trustee—younger, healthier, dependable, willing to make all decisions to promote Andrew's welfare, knowledgeable enough to be able to figure out (with legal or advocate assistance) the impact of public program rules and their interplay with the trust resources. This may be difficult.
While with our specialist attorney, Andrew decided that it would be reassuring to him to grant his parents limited power of attorney regarding health decisions and money decisions. Andrew may never need this assistance. But if a crisis occurs and Andrew needs our assistance, we are legally authorized to help. This requires a trusting relationship and careful, deliberate communication between the family members. Andrew and we feel more assured with this authority in place.
Good wishes as you plan your future.