Chipping Away at the Mountain: Journey to Adulthood

Quick Overview

Pat Hornbecker and Kathy Johnson shared their experiences and advice on navigating the journey to adulthood for individuals with Angelman syndrome. They emphasized the importance of planning for the future and understanding the various support services available. Pat highlighted the need to learn about social security, IHSS, special needs trusts, and self-determination programs. Kathy emphasized the importance of finding and training support staff, as well as being flexible and treating them with respect. They both encouraged individuals to reach out for support and resources, whether through the Angelman Syndrome Foundation or other organizations. They also reminded listeners that it’s never too late to start planning and seeking assistance.

Good evening, everyone. Welcome to Day 14 of the ASF Virtualpalooza. Tonight, we have two amazing individuals who will share their journey and wisdom on transitioning to adulthood. For those new to the ASF Virtualpalooza, thank you for joining us.

Starting the Journey to Adulthood

The journey to adulthood is a significant transition that requires careful planning and preparation. It is essential to understand the various aspects of adult life and the resources available to support individuals with Angelman syndrome. In this presentation, we will explore the steps involved in transitioning to adulthood and provide valuable information to help families navigate this process.

Planning for the Future

As parents, it is crucial to plan for the future and ensure that our children have the necessary support and resources to lead fulfilling lives. This includes understanding the different funding streams available, such as Social Security, Medicaid, and special needs trusts. By familiarizing ourselves with these options, we can make informed decisions and secure the necessary financial support for our children.

Finding Support Staff

One of the key aspects of transitioning to adulthood is finding reliable support staff. This can be done through various channels, such as local community Facebook pages, unemployment agencies, word of mouth, and college student services. It is essential to train support staff effectively and provide them with the necessary information and resources to support our children’s unique needs.

Retaining Support Staff

Retaining support staff can be challenging, but there are strategies to ensure their longevity. It is crucial to treat support staff with dignity and respect, be flexible with their schedules, include them in problem-solving, and provide positive feedback. By creating a supportive and collaborative environment, we can foster a strong and dedicated team of support staff.

Paperwork and Documentation

Transitioning to adulthood involves managing paperwork and documentation. This includes creating schedules, coordinating in-home therapies, and working with fiscal intermediaries for payroll processing. It is essential to stay organized and ensure that all necessary paperwork is completed accurately and on time.

Starting the Journey: Advice for Families

For families just starting the journey to adulthood, it is essential to take the time to understand the various aspects involved. Research and familiarize yourself with the different funding options, support services, and legal considerations. Reach out to resources such as the Angelman Syndrome Foundation and connect with individuals who have walked a similar path. Remember, it is never too late to start planning and advocating for your child’s future.


Transitioning to adulthood is a significant milestone for individuals with Angelman syndrome and their families. By understanding the various aspects involved and seeking support from resources and experienced individuals, we can navigate this journey with confidence and ensure a bright future for our loved ones.

Talk details

  • Title: Chipping Away at the Mountain: Journey to Adulthood
  • Author(s): Pat Hornbecker
  • Author(s)’ affiliation: None
  • Publication date: 2020-08-17
  • Collection: 2020 ASF Virtualpalooza