Planning for the future

Adult Resources

The ASF Adult Taskforce creates and cultivates resources related to adulthood in Angelman syndrome or transitioning to adulthood.

Questions or Requests
If you have a question or idea for an existing or new resource the team could look into, contact Robin Wilkerson robin.r.wilkerson@gmail.com.

Interested in joining the ASF Adult Taskforce? Complete the form on the ASF Committees page

Checklists & Planning Tools

Transitioning to Adulthood

Facility Tour Checklist

Use the tour checklist for tours of day programs and long-term care facilities.

Comprehensive Care Binder

Download the binder. Helpful for every day and transition of care.

Adults with AS FAQ

All About Me for Adults

Download the template and complete to describe your adult with AS to others. 

ASF Family Champions with Adults

 

The ASF Family Champions are family members who have volunteered to be available to other families to share their knowledge, experience and lend an ear.  There is a group of Champions who are parents to adults with AS. These families are a great resource for questions, concerns and advice on various aspects of adults with AS transitioning and thriving. 

See the list on the ASF Family Champions page and reach out to one today. 

Leigh Sutherland
Shari Caspert

Recordings of Webinars & Meetings

ASF Family Conference Sessions on Adulthood

At the ASF Family Conference, there are sessions dedicated to various topics on adulthood in AS and transitioning to adulthood. The ASF has held educational webinars about the topic of Adulthood in AS.  

See the Adulthood Playlist to find the list of these recordings. 

Financial Planning

At the 2021 ASF Virtual Family Conference, Mary Anne Ehlert, CFP, from Protected Tomorrows presented a series of videos on financial and long-term planning for special needs futures.

You can find these 6 videos in the Adulthood Playlist or Financial Planning YouTube Playlist.

1. Overview
2. Government Benefits
3. Legal
4. ABLE Act
5. Retiring for Three
6. Financial & Long-term Planning Q&A

Support for Caring for an Adult with Angelman Syndrome

Angel Guardians

The Angel Guardians group meets a few times a year. These meeting are not only for parents and siblings, but also extended family members, neighbors or friends who are involved in the care of an adult with AS.  Watch a video to learn about the program.

  • Connect with other care givers
  • Learn about available resources
  • Hear from experts

Next meeting: June 15, 2022 at 8:00pm

Discussion on behaviors with Christopher Keary, MD

Adult Siblings

The Adult Siblings group meets a few times a year.

  • Connect with other siblings
  • Learn about available resources
  • Hear from experts
  • Work toward making plans for long-term care for your sibling with AS

See Sibling Resources for times and registration.

The McCollough Family