When you first find out your child has a special need, the first step is often to research. Get a second or third opinion. What resources are available in your doctor's office, your school district, your town, and your state to help provide any additional physical, psychological or educational support that benefits your sweet baby?
And then, just as you have a routine going, something changes. The teacher who connects with your child moves away. Medicines that have been working aren't as effective. New behaviors or symptoms appear. You're constantly juggling, dealing with new challenges.
It's no wonder that so many parents of kids with special needs are so busy planning for the present that they neglect to plan for their child's financial future. But the best time to take a look at this is as soon as you know your child will need additional care.
"It's a marathon, not a sprint," says public policy advocate Christine Walker, whose RTC book, Chasing Hope, chronicles her journey with her son through the maze of special needs. Considering that your child's needs may last past your lifetime, planning ahead is critical, she adds.
Many parents wait until their child is an adult before making decisions about long-term care, says Nicole Mayer, RPG Life Transition Specialist(tm) and co-author of the upcoming RTC book, Navigating Life’s Transitions: Connecting Your Means to Your Meaning. By doing that, they may not make the investment and savings decisions they should do when the child is young.
Parents should answer hard questions as they plan for the future such as:
What sources of financial support are available to you now and in the future? Some government programs offer Social Security Disability, even to children. Plan out what type of assistance your child may have as an adult, and if that assistance alone will cover his anticipated needs.
How will you save and invest for the future? Christine found out if her parents gave her son a monetary gift, it could be considered an asset and could reduce the amount of governmental assistance he was eligible for. Monetary gifts, savings and proceeds from life insurance can be stowed in a special needs trust which can shelter assets to be used later. When setting up the trust, Nicole cautions, always go to an attorney who specializes in special needs and who is located in your state, in order to ensure familiarity with individual state regulations.
Is it likely that your child will go to college? If so, saving for that makes sense. But if that's not a likely path, would saving for vocational training be useful? If a child needs 24/7 support, saving for that may be best. Once you know the likely direction your child can take, you can work with a financial planner to determine how much savings you need for the life of your child.
Decide who will take care of your child now, when he is an adult, and when you're no longer around. Depending on the severity of your child's needs, determine if you want to pass that responsibility of care to other siblings—and if they are willing to accept it. If not, you'll need to identify other resources, such as residential communities. Some communities have long waiting lists, so it is important to plan years in advance.
It's not fun figuring all of this out, Christine admits. It's sad and it's hard and it's not fair. And while those feelings never go away, it's still better to plan.
"Early decisions are better when you're not in crisis and you have the luxury of time," she says.
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