Resources

Find resources you need to navigate your journey with Angelman syndrome. Whether you are newly diagnosed or looking for ongoing support, you’ll find resources to assist every step of the way. Use filters to search by subtopics, life stage, or even location to find information.

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Resources

Family Support
Video
About the Future: Guardianship

ASF Educational Webinar Series by Eric Wright. Discusses the concept of guardianship, particularly in the context of planning for individuals who may require assistance in managing their personal and financial affairs. It explores the responsibilities of a guardian, the legal processes involved in establishing guardianship, and considerations for families contemplating this option. The video aims to inform viewers about the implications of guardianship and alternative approaches to support decision-making for those with diminished capacity.

ASF Educational Webinar Series by Eric Wright. Discusses the concept of guardianship, particularly in the context of planning for individuals who may require assistance in managing their personal and financial affairs. It explores the responsibilities of a guardian, the legal processes involved in establishing guardianship, and considerations for families contemplating this option. The video aims to inform viewers about the implications of guardianship and alternative approaches to support decision-making for those with diminished capacity.

Adults
Video
Adulthood YouTube Playlist

A collection of videos focusing on various aspects of life for adults with Angelman syndrome. The playlist includes expert discussions on topics such as health management, independent living, employment opportunities, and social engagement for adults with Angelman syndrome. The series aims to provide valuable insights and resources for caregivers, families, and individuals seeking to enhance the quality of life for adults affected by this condition.

A collection of videos focusing on various aspects of life for adults with Angelman syndrome. The playlist includes expert discussions on topics such as health management, independent living, employment opportunities, and social engagement for adults with Angelman syndrome. The series aims to provide valuable insights and resources for caregivers, families, and individuals seeking to enhance the quality of life for adults affected by this condition.

Family Support
Video
Goal Setting & Future Planning

Financial planner MaryAnne Ehlert discusses strategies for families with special needs members. She emphasizes the importance of creating a comprehensive plan that addresses financial security, legal considerations, and future care needs. Ehlert provides insights into establishing special needs trusts, guardianship arrangements, and government benefit optimization. The presentation aims to equip families with the knowledge to make informed decisions and ensure long-term support for their loved ones with disabilities.

Financial planner MaryAnne Ehlert discusses strategies for families with special needs members. She emphasizes the importance of creating a comprehensive plan that addresses financial security, legal considerations, and future care needs. Ehlert provides insights into establishing special needs trusts, guardianship arrangements, and government benefit optimization. The presentation aims to equip families with the knowledge to make informed decisions and ensure long-term support for their loved ones with disabilities.

Family Support
Video
Government Benefits

Provides an overview of various government assistance programs available to individuals with Angelman syndrome and their families. The presentation covers topics such as Supplemental Security Income (SSI), Medicaid, and other relevant benefits, offering guidance on eligibility criteria, application processes, and strategies to maximize support. This resource aims to help families navigate the complexities of government programs to ensure adequate care and financial assistance for their loved ones.

Provides an overview of various government assistance programs available to individuals with Angelman syndrome and their families. The presentation covers topics such as Supplemental Security Income (SSI), Medicaid, and other relevant benefits, offering guidance on eligibility criteria, application processes, and strategies to maximize support. This resource aims to help families navigate the complexities of government programs to ensure adequate care and financial assistance for their loved ones.

Medical | Family Support
Document | Printable | Video
Insurance for Individuals with AS

Eric Wright discusses insurance and government benefits, understanding coverage, appealing denials, accessing necessary therapies, and more.

Eric Wright discusses insurance and government benefits, understanding coverage, appealing denials, accessing necessary therapies, and more.

Family Support
Video
Insurance, Advocacy and Resources for Caregivers

Eric Wright discusses navigating private insurance, government programs, and the supports set up nationally and locally for individuals with Angelman syndrome. Learn about government programs, Medicaid and beyond. Discover how to advocate for coverage and what to do when faced with rejections.

Eric Wright discusses navigating private insurance, government programs, and the supports set up nationally and locally for individuals with Angelman syndrome. Learn about government programs, Medicaid and beyond. Discover how to advocate for coverage and what to do when faced with rejections.

Medical | Family Support
Document
Letter of Medical Need for a Safety Bed

Letter of Medical Necessity for a Safety Bed was written by clinicians at the Angelman Clinics. You can download and personalize the letter with the name and information about your individual with AS and send to your insurance provider. Many people find that they need to submit a Letter of Medical Necessity from a physician, in order for insurance to cover the cost of a safety bed.

Letter of Medical Necessity for a Safety Bed was written by clinicians at the Angelman Clinics. You can download and personalize the letter with the name and information about your individual with AS and send to your insurance provider. Many people find that they need to submit a Letter of Medical Necessity from a physician, in order for insurance to cover the cost of a safety bed.