Charting the Journey (legally and financially)

Quick Overview

In this session, Mary Anne Ehlert discusses the importance of creating a plan for the future of individuals with Angelman syndrome. She emphasizes the need for a special needs trust, which allows for the management of funds for the individual without jeopardizing their eligibility for government benefits. Ehlert also highlights the importance of choosing a guardian and trustee who understand the needs of the individual and can make decisions on their behalf. She encourages families to communicate their wishes and provide detailed instructions for future caregivers. Ehlert provides resources for finding attorneys specializing in special needs trusts and suggests reaching out to organizations such as the Special Needs Alliance and the National Academy of Elder Law Attorneys.


In this talk, we will be discussing the important aspects of planning for the future of individuals with Angelman Syndrome. Mary Anne Ehlert, the founder of Protected Tomorrows, will be sharing her expertise and insights on legal and financial considerations. It is crucial for families to have a clear plan in place to ensure the safety and well-being of their loved ones with Angelman Syndrome. Let’s dive into the topics covered in this session.

The Importance of Planning

When it comes to planning for the future of individuals with Angelman Syndrome, it is essential to have a clear vision of what you want for your child and what you want to avoid. This includes considering their happiness, safety, and protection from abuse. By understanding your child’s needs and desires, you can start building a comprehensive plan that addresses their unique requirements.

Financial Considerations

One of the key aspects of planning for the future is understanding the financial implications. It is crucial to assess your own financial situation, including your net worth, income, and expenses. This will help you determine how much you can contribute to your child’s future needs. Additionally, it is important to be aware of government benefits such as Social Security Disability and Supplemental Security Income (SSI), as well as Medicaid and Medicare. These programs can provide crucial support for individuals with Angelman Syndrome.

Special Needs Trust

A special needs trust is a legal document that allows you to leave an inheritance for your child without jeopardizing their eligibility for government benefits. This trust ensures that the money is used for your child’s supplemental care and support, beyond what the government provides. It also allows you to designate a trustee who will manage the trust and make decisions on behalf of your child. It is important to work with an attorney to create a special needs trust that aligns with your specific needs and goals.

Finding the Right Attorney

Finding an attorney who specializes in special needs planning is crucial. They will guide you through the legal process and ensure that your child’s future is protected. You can start by researching directories such as the Special Needs Alliance or the National Academy of Elder Law Attorneys (NAELA). These organizations have lists of attorneys who focus on special needs planning. Additionally, you can reach out to organizations like Protected Tomorrows for recommendations and support.

Building Your Dream Team

Planning for the future requires a team effort. It is important to surround yourself with professionals who can provide guidance and support. This includes medical teams, support groups, financial advisors, and other professionals who specialize in special needs planning. By building a strong team, you can ensure that all aspects of your child’s future are taken care of.


Planning for the future of individuals with Angelman Syndrome is a complex and important task. By understanding the legal and financial considerations, and working with the right professionals, you can create a comprehensive plan that ensures the well-being and happiness of your loved one. Remember to take it one step at a time and focus on the most important tasks first. With careful planning and support, you can chart a successful journey for your child with Angelman Syndrome.

Talk details

  • Title: Charting the Journey (legally and financially)
  • Author(s): Mary Anne Ehlert
  • Author(s)’ affiliation: Protected Tomorrows
  • Publication date: 2020-08-10
  • Collection: 2020 ASF Virtualpalooza