As a former in-home therapist of children with Autism Spectrum Disorder (ASD), I will always cherish the many heartwarming moments with the children, the challenges we worked together to overcome, and the families who welcomed me into their homes as though I always belonged.

One of the things I learned from these families was that having a child or grandchild with special needs often comes with many challenges. Someone always needs to be available to care for them. Family vacations are infrequent. Trips to the grocery store are difficult. Going to a crowded movie theater on a Friday night isn’t ideal. And taking some “me time” is almost always an afterthought.

And then there’s the reality that the child may not ever be able to live a fully independent life away from home. This means that those responsible for the child’s care need to put into action a plan for now, a plan for when they can no longer care for the child, and a plan for when they are no longer here with them. If you are a grandparent of a special needs child, you may wish to share this article with the child’s parents.

The Importance of Estate Planning for Families with Special Needs Children

Estate planning is usually not the most comfortable area of financial planning to address for many clients. You may be thinking of the complexity, the cost, the time commitment, and the emotions that come along with this planning. If you are someone who needs to plan for a child with special needs, these thoughts and feelings are even stronger, but the need to plan is even greater. The focus for you will be to establish the necessary documents to act on behalf of your child and ensure that they can live a full, quality life when you are no longer able to help them. You will also want to be certain that everything is in place if you become disabled. You will need to create what is called a Life Plan.

A Life Plan helps to ensure the right people are in place to care for your child and that they have everything they need to follow your directions. It also gives you a way to efficiently leave assets to your child, while considering the need for government benefits if they cannot work to meet the “substantial gainful activity” level, as defined by the Social Security Administration. In the Life Plan you will outline the present and future personal, legal, and financial needs.

To help you get started, below is a list of categories derived from the book Planning for the Future: Give your Child with a Disability the Gift of a Safe and Happy Life (Russell & Grant, 2010). For each of the categories we recommend listing four priorities on which you’d like to focus. These will be your stepping-stones to help you prepare a Letter of Intent when you meet with your CERTIFIED FINANCIAL PLANNERTM and your Special Needs Attorney to formalize your Life Plan.

  • Residential: If you die or go into a nursing home, where do you want your child to live?

  • Education: What is your long-term perspective of your child’s capabilities?

  • Employment: What has your child enjoyed? List their goals, aspirations, limitations, etc.

  • Social/Recreational: What activities make life meaningful for your child? List sports, hobbies, etc.

  • Religion: Is there a special church, synagogue, or other holy place for fellowship?

  • Medical Care: What has worked and what has not?

  • Behavioral Management: Does your child have special behavior problems? What behavior management techniques have been effective in the past?

  • Advocate/Guardian: Who will look after your child, advocate for your child, and be a friend?

  • Trustees: Who do you trust to manage your child’s funds?

  • Other Areas of Concern: What other aspects of your child’s life are important to note?

To learn how Modera can help you develop a comprehensive Life Plan, please reach out to your team of advisors or contact us.

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This article is limited to the dissemination of general information about Modera’s investment advisory and financial planning services that is not suitable for everyone. Nothing herein should be interpreted or construed as investment advice nor as legal, tax or accounting advice nor as personalized financial planning, tax planning or wealth management advice. For legal, tax and accounting-related matters, we recommend you seek the advice of a qualified attorney or accountant. This article is not a substitute for personalized investment or financial planning from Modera. There is no guarantee that the views and opinions expressed herein will come to pass, and the information herein should not be considered a solicitation to engage in a particular investment or financial planning strategy. The statements and opinions expressed in this article are subject to change without notice based on changes in the law and other conditions.