Angelman Syndrome Adult Transition Services

Quick Overview

The FAST Adult Transition Program offers support and guidance to parents of children with Angelman Syndrome who are transitioning into adulthood. The program provides a toolkit with resources and information on key issues such as decision-making regarding healthcare, Medicaid waivers, and Supplemental Security Income (SSI). The toolkit also includes a checklist and links to specific information. The program emphasises the importance of understanding and navigating legal procedures, as well as the need for a HIPAA waiver to maintain access to the child’s medical records. The Medicaid waiver is crucial as it pays for most adult services, while SSI provides a monthly income for living expenses. The program encourages parents to reach out for help and assures them that they are not alone in this process.


Welcome to our presentation on the FAST Adult Transition Programme. We understand how daunting it can be to think about your Angelman child becoming an adult. As they approach 18, the process can seem overwhelming and intimidating. We’re here to offer support, guidance, and resources to help you navigate this transition.

The FAST Adult Transition Programme

Transitioning to adult services involves many steps and legal procedures. That’s why we started this programme and created a toolkit to guide you through the process. The toolkit is a comprehensive 26-page document that explains adult issues, provides definitions, and links to specific information. It also includes a handy action plan in the form of a checklist.

Key Issues to Focus On

We’ve identified three key issues to focus on first:

  1. Decision-making when your child with Angelman Syndrome becomes an adult, particularly regarding health care, informed consent, and medical decision-making.
  2. Medicaid waivers and the Medicaid waiver wait list.
  3. Supplemental Security Income (SSI) and how to choose a representative payee.

Understanding HIPAA and Informed Consent

When a person with Angelman Syndrome turns 18, they are legally considered an adult. Without express permission from your adult child, you may not be able to give permission for medical care, speak to doctors, communicate with Medicaid or insurance companies, or even pick up their prescriptions. This is due to the Health Insurance Portability and Accountability Act (HIPAA).

Informed consent is another crucial issue. It’s a process in which a patient learns about the purpose, benefits, and risks of a medical intervention and then gives permission for the treatment.

Medicaid Waivers

Medicaid waivers, formally known as Medicaid home and community-based services waivers, are based solely on your child’s income and assets. They pay for most adult services for our kids with AS, such as personal care assistance, respite, transportation, support in community activities, and adult programmes.

Supplemental Security Income (SSI)

SSI is a monthly income from the federal government’s Social Security Administration to support people who have never been able to work due to a disability and have limited or no income. When your child turns 18, they are considered a family of one, and their SSI funds are based on their income alone.


These three steps set the foundation for your child’s adult life. They are decision making for health care, obtaining a Medicaid waiver, and applying for and obtaining SSI. The FAST Transition Toolkit is comprehensive and covers many more issues.

Remember, we’re here to help. We’ve been through what you’re facing and understand the challenges. To apply for the FAST Adult Transition Programme, visit the Foundation for Angelman Syndrome Therapeutics webpage at

Talk details

  • Title: Angelman Syndrome Adult Transition Services
  • Author(s): Tracy Carreola, Juli DelMonego
  • Author(s)’ affiliation: FAST
  • Publication date: 2020-12-31
  • Collection: 2020 FAST Educational Summit