4 Tips for Estate Planning When Your Child Has a Disability

Michelle's sons, one of whom has Down Syndrome.
Michelle's sons, one of whom has Down Syndrome.

As our children with disabilities grow older, and we ourselves grow older, the future can seem daunting. The future can be overwhelming. Taking steps to plan for the future can seem way too complicated, especially when you don’t know where to start. Here are four simple steps to move forward.

Disclaimer: I am not a lawyer, nor do I have any legal training. I am just a parent like you.

1. Create a letter of intent.

A letter of intent is defined as a letter of instruction that includes information your family and friends will need if you die or for any reason become unable to act. It should list everything from the passwords to your online financial accounts and personal information that someone would need to step into your life, your home and care for your loved one with a disability. This letter can include medications, daily routine, strategies you use for calming, therapists and other daily living items someone not living in your home may not know about your life. Here is a template created by The ARC. The goal here is for someone to step in and see how your life works with as little stress as possible, making it an easier transition for your loved one.

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2. Meet with a lawyer.

Reach out to your local ARC or friends for a lawyer to trust. Some lawyers will do a free consultation. Allow them to help you build a vision for what you want your loved one’s future to look like. While it can be expensive, it can worth the money now to ensure the future is well defined and resources are in place. Here are some things to talk more about with a lawyer:

a. Create a will. Who is the best caregiver for your child? Who should be in charge of the money? A will also ensures the court doesn’t take a cut of your savings. Without a will, the estate goes to probate, the judge decides where the assets go and there are costs involved. Having a will ensures the monies are distributed as you intend, and the care of your child goes to the person you designate.

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b. Create a special needs trust. A special needs trust allows you to distribute funds and property in a way that doesn’t interrupt government funding. Did you know your loved one cannot have more than $2000 in their bank account to receive Social Security and Medicaid?

c. Create an estate plan. You can use various methods and resources to create a vision for transferring a person’s assets and wealth after their death.

3. Set up power of attorney or guardianship.

This can be a complicated dilemma for many families. It should start with competency. As with all things, look to the least restrictive option. Do you need to take full guardianship? Can your child understand money and decisions? In part or by themselves? Will they ask for help? If yes, power of attorney financial and medical issues may be a viable solution. Supported decision-making is an alternative that empowers people with intellectual disabilities to make choices with support and while preserving their rights. If guardianship is your goal, consulting a lawyer should start at age 17.

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4. Set up an ABLE account.

An ABLE account helps ensure benefits aren’t jeopardized. This account can hold monies to ensure your child’s regular account never has more than $2000, keeping government benefits in place.

This may seem like a lot, but take it one step at a time. Do one thing at a time. This process may take a year to get all your paperwork in place, or it may take longer, so start now. Start with the letter of intent and start to think about the vision you have for your loved one.

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