Anyone who has a special needs child knows you plan your life around that child, but did you know you must also plan your death around him/her as well?

Most people who set up a will don’t realize that a will just isn’t enough to ensure your special needs child will get what he/she needs after your death. At some point, as a parent of a child with special needs, you will need to create a Supplemental Needs Trust (also known as a Special Needs Trust). This is the best way to manage whatever money you may leave your child. It is the only safe way to be sure the funds you leave are protected and well-managed and that the child will not lose vital public support such as Medicaid or SSI. If any funds more than $2,000 are left to the child directly, he/she would most likely lose these benefits.

When you are ready to set up the trust, it’s best to have this done by an attorney who specializes in this area. Recommendations from other parents who have used this type of attorney can be a great help. We found our attorney by attending a workshop on financial planning for parents with special needs children offered through a support group in Rome, Ga. At that workshop a special needs attorney and financial planner spoke on general topics of interest to parents in regard to how to plan for your child’s future. The attorney who spoke has a special needs child and a wife who has health issues.

We thought, “What better person to use than someone who lives this every day?”

We set up an appointment in his office to discuss our specific situation. The cost for this service can be high, from $1,500-$4,000. Ours ran $1,800, but we negotiated the price a bit. Don’t be afraid to ask for discounts. The will is a separate document, and therefore, a separate cost. In our case, being military, we are able to get simple wills done at no cost through the legal office of any military base.

A couple of things you will need to decide beforehand are:

1) Who will be the trustee? This can be the most difficult decision because the trustee will have ultimate power and responsibility over how the trust funds are invested and spent for your child. The trustee must know the child well and understand their everyday needs. The trustee must be sure to invest wisely and keep accurate records of money spent from the account. It may be best to have both a family member and a professional trustee share the role as co-trustees.

2) How much money do I need to put into the trust? When opening a trust, you can put any amount into it, but you do not have to put in a cent. It can be set up so that upon your death, all or a part of your money can go into the trust. If you have other children or family members, you can divide the money among other beneficiaries and the trust. The money should not be left to the individual, but to the trust. For example, a third of my money I wish to go to my daughter, a third to go to my son and a third to go to the Supplemental or Special Needs Trust for my special needs child. This way my special needs child is not held to the restrictions of Medicaid which says you can have no more than $2,000 in assets. This money is not counted as an asset in that respect. The trust cannot be touched by any agency or company in the collection of any debt upon the parent’s death. The money would be available solely for the purpose of supporting and providing for the special needs child.

After setting up this trust, be sure to go back over all your insurance policies, retirement funds, investments and so forth to be sure the beneficiary is changed to read “Special Needs Trust” and not just the individual’s name. Notify anyone whom you think may be planning to leave your child an inheritance to do the same.

A couple of good websites for more information on Supplemental or Special Needs Trusts are specialneedsanswers.com, 401kid.com/community/snt/php and biernathlaw.com. Neither this information nor these websites are intended to replace the consultation with an attorney.

Pam Rasmussen is a resident of LaFayette. She is the mother of a child with spina bifida and an advocate of special needs children and adults. She can be contacted at jraz1230@comcast.net.