How to plan your estate when you have a child with special needs

Estate planning. It’s not something parents really want to do. You have to face your own mortality, and the fear that you might not live long enough for your children to become adults.

For parents who have kids with special needs, they know their kids might outlive them and need a support system to handle everything from finances to personal care.

Last summer Down Syndrome Association of Central Texas hosted a seminar for its parents with Justin Blumoff, a trust and estate attorney from Sharpe & Associates. Estate planning for families with someone with special needs does have some of the same elements as families with neurotypical children. You still need to think about these things:

  • A will
  • A living trust
  • Medical power of attorney
  • Financial power of attorney
  • Advance healthcare directive
  • HIPAA authorization

“One of the misconceptions is that (having a kid with special needs) really changes everything,” Blumoff says. “”It really doesn’t.”

One thing is different: Parents of children with special needs do have to take care that their estate plan doesn’t disqualify their child from receiving government assistance like Social Security disability, Blumoff says.

Blumoff helps families set up a special needs trust that includes language that will allow the children still to get assistance.

“If you use a traditional plan, you may disqualify them,” he says. Housing is a particular concern as far as who inherits a house and what money can go toward the person’s housing.

Jon and Connolly Lees and their children Breda, 4, and Henry, 6, now have an estate plan in place. Breda has Down syndrome. Lees family

When Blumoff meets with families, he asks them to think about their assets as well as what the needs will be now and in the future. Sometimes that means having a person who is the guardian and a different person that has the fiduciary responsibilities. Blumoff does recommend contacting whomever you choose to make sure they are willing to take on these responsibilities. Some families even write a letter to the people they name in the trust to pass on more information. Often that letter is “This is how we live our life and these are the people we want them to have contact with,” he says. “Some people go through it and are very focused on investments; some people do pages and pages of pouring out their love.”

Often, when estate planning with families Blumoff will have an initial 10 minute phone call.

He’ll ask families to consider who would be the first person they would call other than a spouse for medical decisions, who would be the first person other than a spouse for financial decisions? Who would they generally want to take care of their children?

After families make those decisions, they’ll have a 30 minute to an hour meeting to go through it with Blumoff, then schedule a time to come back and sign the documents. Families can expect to spend $2,000 to $4,000 based on the complexity, Blumoff says.

“It seems a lot more overwhelming than in reality,” he says. Often people will tell him, they have been meaning to do it for 10 years, but then they thank him with how easy it was.

“Planning for special needs families is not a complete wipe of the board and do something different, it’s include a few extra provisions.” It took Blumoff two years to get to doing his own estate planning.

Once you’ve gone through the process, you should revisit it every three to five years, Blumoff says. He keeps a watch on legislation and how it might change the wording that might need to be included the documents.

Jon Lees and his wife Connolly did their planning for their children Henry, 6, who is neurotypical, and Breda, 4, who has Down syndrome. They had to consider what would happen now if something were to happen to them as well as in the future and what role Henry might play eventually in Breda’s life. They set it up the document with provisions in place to grow with the children as they age, but Lees also learned a lot about revisiting it as the children age and Henry is given more control.

“We want to do everything we can that when we’re gone, she’s going to have a team of family members to care for her and help make decisions alongside of her, but also centered around her needs and happiness,” Jon Lees says. “We’re thinking of that for our typically developing son as well,” he says.

Special Needs Family Jamboree

Casey’s Circle is planning this free event with more than 20 organizations coming to inform families about available resources.

10 a.m. to noon Saturday

Play for All Abilities Park, 151 N. A.W. Grimes Blvd., Round Rock.

Register at caseyscircle.org to attend


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