Estate Planning Tips for Parents of Children With Disabilities

two parents hugging their child with smiles all around

This article is a part of True Link’s Guest Expert Series. We have interviewed leaders knowledgeable in disability planning, elder law, and trust administration and will be sharing their expertise with you in a series of videos and posts. Note: this article is not intended to provide investment, legal, tax, accounting or medical advice. Before making decisions involving investing, legal, tax, accounting or medical concerns, you should consult appropriate professionals regarding your specific situation.

As a parent of a child with disabilities, you want to ensure your child is properly cared for in the event that you are no longer around to support them. Estate planning is important for anyone who wants to provide stability and security for a loved one after they are gone, but this process can be more complex when a child will need support throughout their adult lives. Wherever you are in the estate planning process, here are four things you should consider.

Tip 1: Lean on experts for support

“You are not alone,” John Henry, Principal Attorney of the Law Office of John B. Henry III often reminds families. Whether you need help establishing a Special Needs Trust (SNT), creating a long-term care plan, or navigating public benefits there is a person or resource out there that can help.

As Sharon Reich, Senior Trust Advisor at AGED (a Pooled Special Needs Trust in Florida) recommends. “get legal advice from an estate planning attorney or Elder Law attorney so you can protect your loved one when you’re gone, not only [for their] financial situation, but also for their personal care.” You can also turn to local and regional nonprofits, including Pooled Special Needs Trusts, that help families and people with disabilities everyday. 

Tip 2: Document, document, document

If you aren’t around to communicate what your child needs to be happy and healthy, you want to make sure you’ve left clear, detailed instructions for caregivers to follow. “Parents [...] sometimes struggle recognizing all they’re doing as a parent for their child. So when the trustee steps in, we need to know the kinds of things to put those pieces into practice,” explains Kerry Tedford-Coles, Executive Director for PLAN of Connecticut, a nonprofit trustee. If you’ve been driving your kid to swim class every Sunday for 22 years, we need to make sure that continues to happen.” Tedford-Coles encourages families to write down everything someone might need to know about their child, down to little things like what socks they have to wear to leave the house. These details can be invaluable to a future caregiver as well as their trustee

Tip 3: Include your child in decision-making 

As you go through the planning process, you don’t want to leave your child out of the conversation. “We want to include the person that the planning is about,” emphasizes Henry. Understanding what they want for their lives, the options they have, what they think their needs will be, and how they see money being used are all critical to developing a strong plan for their future. You may also want to seek experts who advocate for person-centered financial planning or supported decision-making to build a plan that will continue to include your child in the decisions that impact them. 

Tip 4: Revisit your plan regularly 

As Steve Dale, Trustee for Golden State Pooled Trust and principal attorney of The Dale Law Firm explains, “There are probably going to be challenges that will come up that we couldn’t conceive of[...], so we need to make sure whatever plan we make is going to be flexible.” For parents of children with disabilities, estate planning isn’t a one and done process; Dale advises reviewing your non-legal documentation (often called a “Letter of Intent”) at least once a year, “and keep adding to it, [so you can] document how things evolve as time goes on.” You may not need to rewrite your initial plan, but as your child gets older you’ll want to add on any new information you’ve discovered – changes in interests, different sensitivities/preferences, new health challenges, etc.

Estate planning can be daunting, but the ultimate goal is the wellbeing of your child, or as Dale says “to help a person with a disability lead their best quality of life possible with the resources that you’re able to set aside to help them on their journey.” While peace of mind can be hard to come by, a thoughtful estate plan with detailed documentation should help you feel more confident that your child will be well taken care of after you are gone. 

‍Want to watch these videos on Vimeo? Here are the links to the guest expert videos related to this topic:

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