By setting up a special needs trust for your disabled child, you help ensure that they’ll be eligible to access government benefits for which they qualify while still being able to enjoy the extras you can provide — while you’re around and after you’re gone. Choosing the right guardian for your child and trustee for the plan, of course, are also key to planning for their future.
There’s one more thing you should put in place. It’s not a legal document, but it should be immediately available to whoever will care for your child when you can’t. It’s a letter of intent (LOI). This can also be invaluable if something happens that leaves you unable to communicate with your child’s caregiver even temporarily.
What to include in an LOI
It should include contact names and phone numbers, medical information and your child’s daily routine. However, just as important – maybe more so – is telling your caregiver what they need to know about your child.
Your chosen caregiver/guardian may be a family member who knows your child almost as well as you. However, likely there are still things they don’t know. If your alternate caregiver needs to take over, they may not be as familiar with your child’s unique qualities and needs.
If you don’t know where to begin, think about what you’d want someone to know if you were unable to be there or communicate with them for two days.
Here are a few basic pieces of guidance to include that can help your caregiver – and, more importantly, your child:
- How to manage “acting out” behaviors
- What words/actions to avoid
- Food allergies and preferences
- What they need help with
- What they like to do
- Special talents/skills
- What kinds of things you’re working on with them (for example, communication, exercises and self-care skills)
While all of the above may apply to your child, you likely have other information that’s just as important.
You’ll also want to think long-term. What kind of future do you want for your child? What do they want for themselves?
An LOI doesn’t have to be written by one person. You can get input from the whole family and others who spend time with your child. You should update it regularly as your child changes. While, as noted, this isn’t a legal document, it should be part of your special needs planning for your child.