Future Planning for a Child Who Has an Autism Spectrum Disorder

According to the Centers for Disease Control and Prevention, one in 54 children has an autism spectrum disorder such as autism or Asperger’s disease. After an ASD diagnosis, parents often have questions about their child’s ability to live independently in the future.  

Review these considerations when planning lifetime education and care needs for a child who has ASD. 

Guardianship

In this situation, parents must consider guardianship when the child is a minor, when he or she reaches age 18, and when they can no longer care for their child because of disability or death. Ask these questions: 

• Who can care for your child until he or she reaches age 18? 
• Will the child be able to make independent educational, financial and medical decisions upon reaching age 18? If not, parents can serve as his or her legal guardian or conservator. 
• If the answer to the second question is no, who can take over the conservatorship role when the parents die? 

Financial planning

Children who have ASD often qualify for lifelong financial support through federal programs such as Supplemental Security Income and Medicaid. Families should learn about eligibility for these programs so they can fill in the gaps with other forms of financial support where needed. 

For example, many families rely on a special needs trust if they expect their child will be unable to live independently. Federal benefit programs supply only very basic financial support. A trust allows the parents to provide the child with supplemental income in adulthood without impacting eligibility for these benefits. 

Parents should also create a letter of intent that spells out their wishes for their child.