Children with certain conditions such as autism or autism spectrum disorder (ASD) require special planning in order to provide for their needs. From a legal standpoint, there are two steps that parents should take in order to protect and to provide assistance to their child who has developmental disabilities.
One step is to seek appointment as the Guardian Advocate for the child—particularly if the child is an adult. Being appointed as Guardian Advocate allows the appointed person, usually a parent or sibling, to make medical decisions, assist with finances, etc. An earlier blog published on May 6, 2020 discussed how the Guardian Advocate is appointed and how using this approach is less humiliating, degrading and stigmatizing to the adult child. We encourage you to go back and read that blog entitled “Guardian Advocate for Adult Children with Developmental Disabilities.”
Perhaps one of the more challenging aspects faced by parents with a child having developmental disabilities is making sure that resources are available to provide medical and other necessary benefits over the course of the child’s lifetime. These children, as adults, will likely not be able to provide for themselves. Often these families can only turn to governmental programs such as Supplemental Security Income (“SSI”) and Medicaid to meet the overwhelming demands. Over the course of the child’s lifetime, these benefits can be significant and the parents should do everything reasonably possible to avoid them being lost.
One way that the benefits can be jeopardized is when the parents die and leave an inheritance, whether monies or other assets, to the developmentally disabled child. That inheritance could jeopardize the child continuing to qualify for benefits. Over the course of the child’s lifetime, those governmental benefits, if lost, would have an enormous impact on the child’s quality of life.
Instead, families with children on these governmental programs should set up a type of irrevocable trust called a “Special Needs Trust” or “SNT”). If this is done correctly, the inheritance monies or assets can go into the SNT upon the death of the parents and can be available to provide for the child over his or her lifetime. So long as the SNT does not duplicate governmental benefits and otherwise complies with the limitations set forth by the applicable governmental program, then the benefits will continue uninterrupted.
An example may help. John and Suzie have a 21-year old daughter, Nancy, who is on the ASD spectrum. Their daughter is not self-supporting and will likely need SSI and Medicaid to provide for her needs throughout her life. If John and Suzie die and leave an inheritance to Nancy, that inheritance could disqualify Nancy from receiving her benefits. However, if John and Suzie establish a SNT and set it up to receive the assets intended for Nancy, then those assets can provide for Nancy and not jeopardize her disability benefits.
A SNT is a complicated planning document which should be prepared by an attorney skilled and experienced in drafting these kinds of trusts. It is not advisable to pull some SNT form off an Internet site and hope that it protects your child. Equally important is the legal advice that goes with the SNT document. Having a form is one thing; having the advice and counsel to understand and execute it is another.
If you know parents who have a child with developmental disabilities, and particularly if the child is nearing adulthood, please share this blog with them. The lawyers at our firm would be happy to speak with them and offer some counsel—regardless of whether they hire us!