Every parent worries about their child’s future, but the parent of a special needs child worries more. Who will take care of him/her every day? Who will advocate for him/her? Who will support him/her? Can I even do anything to address these issues?
Yes, you can. You can do a lot to make sure your child lives a long and happy life after you are gone. A moderate amount of thinking and planning right now can lift that burden of worry from your shoulders. Here is a list of things you should consider doing:
- Commit to making a plan. The worst-case scenario, regardless of how wealthy you are, is to pass without having any plans in place at all. No one will know what you truly wanted, a judge may make decisions about your family, and the care of your special needs child is left to chance. Although planning entails some thought, paperwork, and hard choices, it is the most important thing you can do.
- Write a Letter of Intent. In it, describe all the aspects of your child’s care, including medical, emotional, logistical, and financial elements. You or your spouse probably carry a lot of this information in your head, so it’s important to write it all down. Be sure to include the “little things,” too, like a favorite TV show, or the importance of waffles for breakfast. Especially if your child can’t fully communicate, these details will be lost. Although this letter is not legally binding, it’s the best way to lay out, all in one place, a snapshot of your child’s life the way it is now, and how you envision that carrying forward to the future.
- Establish a special needs trust. If you want to leave money behind for your child’s care, you won’t want to outright will it or give it to him/her. For your child to be eligible for Social Security and/or Medicaid benefits, his/her personal assets and income must remain pretty low. To get around this, you say, in a bigger trust called a revocable living trust, that any money your child will inherit will be inherited through a special needs trust. The revocable living trust is like an umbrella, and the special needs trust is like a spoke of the umbrella. A special needs trust can be used to pay for a long list of supplemental activities and services.
- Choose trustees, guardians, and caregivers. You will want to designate a team of people to work together to care for your child. The trust you establish will require at least one trustee, but you can choose more than that; you might consider a close family member plus a financial institution. That way you have both a financial professional and someone who knows your child well. In addition to trustees, this “team” might also include a health professional familiar with your child’s case. You may want to designate someone to take over as the official guardian of your child. Once your child turns 18, this guardian needs to be court-appointed. You may want to line up an attorney to advise on the trust. You want to create a group of people who can make a variety of contributions – financial, legal, medical, emotional, with some close family, some professionals – so that together they can provide the best care. You should get a commitment from these individuals, in writing.
- Talk to the rest of your family. Anyone you want to designate to care for your child after you’re gone must be willing to do it. Don’t assume. Be sure to find out. You are asking for a serious commitment, and you don’t want to designate someone who is unable or unwilling to take this on, for reasons unknown to you. You should also talk frankly with your other children about what they will and will not inherit because of the greater financial need of their special needs sibling. And if anyone in your circle wants to leave anything in his/her own will to your child, be sure he/she leaves it to a special needs trust. Even a modest bequest from a well-meaning family member can endanger your child’s government benefits.
Don’t feel overwhelmed! You don’t have to make all these arrangements in one day. The key is just to get started on them, one step at a time. Know going in that some parts will be logistically challenging, some will be emotionally draining, but all will be so worth the effort. I will help you as much as I can.
Susan Sandys can help you put together legal documents to protect your special needs child. Call today to set up a free consultation.