One of the things that will occur when your child reaches the age of 18 is that you may need to petition the courts for “legal guardianship.” You will be working with an attorney (experienced in special needs) for this meeting, usually in front of a judge.

You should create a will with provisions for your special needs children (as well as other children and anyone else). By doing this properly, you protect their valuable government benefits. This requires in-depth knowledge of the federal and state laws as they pertain to protecting this eligibility. This is not welfare, it is entitlement, and you must know of and protect these benefits, as they provide significant financial assistance for your child’s future.

It may require the creation of a “Special Needs Trust.” If your child has assets in his name valued above a certain limit (currently $2000) you may jeopardize his ability to receive benefits. By having his assets protected in a “Special Needs Trust” your child will not be viewed as owning those assets. But you will be part of creating the instructions for how that trust exactly uses those funds and only for your child’s future. So how do you provide that this trust will have enough funds to be able to provide for your child’s future?

Obviously you can leave in your will sufficient funds to the Special Needs Trust to take care of your child for the rest of his life. That is a very substantial amount.

Or you can purchase various types of life insurance. This can guarantee the amount available to the trust. The trust will be the beneficiary of this life insurance policy. Life insurance proceeds are tax free to the beneficiary.

How much should the policy be for? How much will your child’s future require? How much life insurance can you afford to purchase?

The answers to these questions can be worked out between you and the financial planner/life insurance agent. Today, there are many different types of life insurance plans. There will be several that can provide for your child and your budget. In all of these types of policies, the earlier you start, the less the insurance cost.

Remember that you are the expert on your child but you may need to turn to a number of other experts for assistance on such things as special needs estate planning. While many of these issues can seem overwhelming, it is important you take the time with experts to provide for your child’s future.

Your situation requires individual attention from these experts to merge with your plans for your child. I believe that it is similar to a three-legged stool to be most effective. The first leg is your plans for your child. The second leg is the choosing of the actual residence you would like your child to live in. And the third leg is the financial plan to support the cost of the first two legs. When you have assembled this loving three-legged stool for your child’s future you will be assured that you have done your best and you will live with that knowledge.

CFXF & FRAXA JOINT FUNDRAISER - Fall 2003

Conquer Fragile X Foundation and FRAXA Research Foundation will be holding a joint fundraiser on October 8, 2003 at the Green Valley Country Club in Lafayette Hills, Pennsylvania. The event, under the co-chairmanship of Robin and Jerry Batoff, will be spectacular. For more information, phone Cristy Hollin at 610-649-8349.