Recent polls have shown that up to 80% of parents of children with special needs share the same biggest concern: "What will happen to my child when I am gone?" So much is wrapped up in that thought: where will they live, who is going to understand their unique needs, how will their expenses be paid, and of course, where will they turn for support?

Even without special needs, the loss of a parent is an extraordinarily difficult life event. While every special need, and every individual, has their own nuances, members of our community have a more acute challenge: up to 80% of individuals with special needs are living in their childhood homes, and have never experienced daily life without the support of their parents. Losing mom and dad isn’t just the loss of a loved one, it’s the loss of their core financial, social, and emotional infrastructure. Moreover, many of the supports we rely on may not be available to our children, and they need even more support than we do.

While there is no substitute for a parent’s love or care, with proper planning, stress and worry can be reduced, many of the concerns that keep parents up at night can be addressed, crises can be avoided, and the transition to life after mom and dad can be made easier.

So why do only 1 in 3 families have a will? Even fewer have done any financial planning, and if you ask most parents about comprehensive care planning, overwhelmingly you’ll see expressions ranging from blank stares, to guilt, to exasperation.

We get it! Keeping our heads above water with everything going on in life is hard enough. Managing the medical, caregiving, educational, and social needs of your child is already exhausting; plus you still have all the responsibilities of a non-special needs parent

work, spouse, other children, helping your parents, and more.

For most of us, it is impossible to get to everything on the to do list, so we prioritize, and putting off long-term planning "until things settle down" has no immediate consequence, so it is the action item that gets put on the back burner. Besides:

• Only wealthy people need wills and special needs trusts. I don’t have enough money that this applies to my family.
• My child has government benefits that will continue when I am gone, so I don’t need to plan.
• My other children will handle everything when I pass, so there is no need for me to do anything.
• I’ve done some planning, it’ll be fine. The will I downloaded online is sufficient for my needs.
• All financial planners and lawyers do is figure out the money. I don’t have any money; I am worried about care. Planning won’t help MY issues.
• Planning is difficult and time consuming and I have too much going on, and not enough time as it is. I am not dying any time soon. I’ll get to it – eventually

"With proper planning, mom and dad can be made easier." the transition to life after

If this sounds like you (and statistically speaking it probably does), every one one of these responses is based on misinformation, or a fallacy that has become ingrained in our community. We have to fix this, because it leaves our loved ones vulnerable, and may lead to unintended, sometimes tragic outcomes.

LOOKING DOWN THE ROAD: While there is no substitute for a parent's love or care, with proper planning many of the concerns that keep parents up at night can be addressed.