In September 2015, the House Energy and Commerce Subcommittee on Health took up H.R. 670, the Special Needs Trust Fairness Act. The act corrects a problem in the current law that assumes that all individuals with a disability lack the mental capacity to establish their own self-settled special needs trust (a stand alone special needs trust funded with the individual’s own assets). Currently, self-settled special needs trusts can only be created by the parent, grandparent or guardian of an individual with a disability, or by the Court. The individual with a disability cannot create his or her own special needs trust as the law is written today.

This restriction is due to an oversight when the bill was originally drafted and put before Congress. An organization consisting of parents and grandparents of disabled individuals was lobbying for the bill, and its representative was given only a few minutes to review the final version of the bill. While the representative verified that parents and grandparents were listed, she forgot to ensure that the individual with a disability was named as a potential creator of a special needs trust. She signed off on the bill with that omission, and it was subsequently passed by legislators.

As the law stands today, it violates the dignity of people with disabilities. The law presumes that individuals with disabilities are incapable of creating a trust themselves. The presumption is untrue and, frankly, antiquated and offensive.

We encourage you to contact your Senator and Congressional representative to urge them to correct this oversight and allow individuals with disabilities to create their own self-settled special needs trusts. To locate your representative, please go to OpenCongress.org – https://www.opencongress.org/people/zipcodelookup. Once you have identified your representative, click on your representative’s name to find his or her phone number, email address, and other contact information.

Diane Weinberg