What Special Needs Parents Need to Know About Wills and Trusts

Abbi Perets
May 19, 2011

A few years ago, my then 7-year-old daughter had big plans for my demise.  These were revealed in a seemingly innocent picture she drew one day.  When I asked her to tell me about her drawing, she explained, "That's me, that's daddy, and that's the dog we got."  A dog?  "Well, yeah.  When you're dead, we can get a dog."

This probably would have bothered me more if I thought that my own mortality was something I should actively consider.  But, like most of us, I think of death as something that happens to other people.

Of course, when you consider it objectively, that's a ridiculous statement, but most of us insist on perpetuating this belief.  And why not?  Confronting our own mortality isn't fun.  It forces us to make difficult decisions: Who will look after our children?  How will our assets be divided?  What will happen to the home we have lovingly built and nurtured over the years?

But ignoring reality - and the reality is that all of us will, someday, die - is irresponsible, particularly when you're a parent.  And in addition to the aforementioned daughter, I have four other children - one of whom has special needs.  Refusing to acknowledge the inevitable puts all of them at risk.  Here's what you need to know.

1.  Writing a will isn't expensive, but it is complex.

"Cost shouldn't keep you from writing a will, but you shouldn't attempt to do it on your own, either," says. Steven J. Weisman, a lawyer, author, and professor at Bentley University.  "Getting forms from the Internet may be convenient," he says, but cautions that such documents won't be tailored to your situation.  "In addition, the execution of wills is subject to certain formalities that, if not precisely followed, could invalidate the will," he says.  A will can range from a few hundred to several thousand dollars depending on what's involved, but getting it done properly is critical.

2.  Trusts are not only for wealthy families.

A trust allows someone to manage assets on behalf of someone else.  "A Supplementary Needs Trust allows parents to provide financial assistance to a special needs child without making the child ineligible for Medicaid or other public benefit programs," says Weisman, Austin, TX-based attorney and mother of two special needs children, Pamela Parker further explains that, "This kind of trust is absolutely not just for wealthy families."  A Supplemental Needs Trust "is for any child whose family wants to provide even a modest amount of money to buy things that will make their child's life better."

3.  Not writing a will can cost you dearly.

Weisman says that when you choose not to write a will, your assets may go to people you never intended to receive them.  In addition, if you have no will and your assets are then handed over to your special needs child, the inheritance may make him ineligible for many public benefit programs - even if your assets will not be enough to properly care for your child.  In fact, says Parker, "Parents, grandparents, and adult siblings of a special needs child all need to have a will.  Not having a will may mean money is wasted that could have been used to improve the child's life."

4.  A Letter of Intent can make implementing your will and trust much easier.

Bill Dougherty, Assistant Vice President of MassMutual's SpecialCare Program, says, "A Letter of Intent (LOI) provides critical caregiving instructions to future guardians, trustees and advocates of a person with a disability, in the event of a death of a parent or caregiver."  Although the LOI is not a legal document, "a court may consider the wishes expressed within it at a legal proceeding, and the LOI can be an effective supplement to a will or trust because it attempts to ensure that a family's wishes will be fully understood," he says.

5.  You don't need a lawyer to write your LOI.

Because the LOI isn't a legal document, you can write it on your own.  (MassMutual has a free template you can download.)  For a child who can't express his own needs and wants, the LOI is vitally important.  "It allows parents to document their hopes and dreams for their children's future," says Dougherty.  Generally, the LOI "offers guidance to the courts and trustees for interpreting care instructions and typically includes emergency contacts, medical history, preferred living arrangements, education or work arrangements, recreational preferences, behavioral challenges, and a summary of family and financial information," he says.

6.  Planning for the future is hard, but there is payoff.

"Special needs planning takes guts, heart, and smarts," says Parker.  Parents need guts to plan for a future they won't be around to see, heart "to pour your love for your child into that plan," and smarts to work with the right professionals to ensure that the plan works the way you intended.  And the payoff?  Well, when the work is done, you know that your child will be cared for just as you planned and according to your wishes.


Tips and stories from parents and caregivers who’ve been there.

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