New legislation would help families of children with autism, other disabilities

Over the years, growing numbers of parents and grandparents have requested our help to create estate plans that provide for an autistic child. The statistics bear out what we see in our practice: According to the CDC, in 2010 one in 68 American children fell on the autism spectrum, up from 1 in 150 a decade earlier. The dramatic increase over the last decades is only partially explained by better screening and diagnosis.

Fortunately, many on the autism spectrum go on to lead fully functional lives. But for others, it is a severe and chronic disability that requires loved ones to make thoughtful legal and financial plans. One of the strategies we recommend to parents in these circumstances is the creation of a special needs trust to benefit the child.  You can read more about special needs trusts here.

We caution our clients against using a UGMA (United Gift to Minors Act) account as a vehicle to set aside money for a disabled grandchild - in fact, for any grandchild. A UGMA account is easy to set up, but beyond that, this type of account has little to commend it. Read more about UGMA accounts.

A recent and hopeful development in the fight against autism is the ABLE (Achieving a Better Life Experience) Act, currently under consideration in Congress. The bill would allow the creation of non-taxable savings accounts that may be used to cover medical and other expenses of disabled children, while preserving the individual's access to key government benefits and services like Medicaid. Read more about the ABLE Act here. To contact your congressperson in support of the legislation, click here. To contact your senator, click here. 

Also this past week, funding was renewed for the Autism Collaboration, Accountability, Research, Education and Support Act (Autism CARES, for short) that had been set to expire in September. The Act provides funds for education and research, and for the first time, calls for the appointment of someone at the Department of Health and Human Services to oversee all autism-related initiatives.