The Top 10 Reasons it is Necessary to Plan for Your Special Needs Child’s Future

By: Sheryl R. Frishman, Esq., Littman Krooks LLP

As a mother of a special needs child, there is nothing more frightening for me than my son being in this world without me. The thought of this keeps me up at night. In my opinion, no one knows him as well as I do and no one can care for him like I can. Nevertheless, there will most likely be a time when he is on this earth without me. While planning for the future cannot give you complete peace of mind (as nothing can), a proper plan can be put in place, and there are fabulous tools available, to ensure that your child will be properly cared for after you are gone. Not planning will put the child you want to protect more than anything in the world in jeopardy and in a vulnerable position.

Here are 10 reasons it is necessary to plan for the future of your child with special needs:

1. You are able to do the planning now. Do not wait until it is too late to do the planning. If you are reading this article you are well enough to do the planning for your child. Mahatma Gandhi said “Learn as if you were going to live forever. Live as if you were going to die tomorrow.” We cannot be sure what tomorrow will bring. The time to plan is now!

2. Planning can change as your child ages. Many parents do not want to plan for the future because they want to wait and see exactly what their child’s functioning level will be. Also, parents often want to wait until siblings are old enough to take the reins. A plan that you put in place now can be altered at a later date if circumstances change. However, missing the opportunity to plan, because you waited, will hurt your child much more than a potential change in functioning level. Better to be safe than sorry!

3. You are able to make sure future caregivers know your wishes. Write down what it means to care for your child. What are his likes or dislikes? Where would you like him to live? Etc. Etc. Preparing a “Letter of Intent” (sample letter of intent) will give the people who will be caring for your child the intimate details of what it means to care for your special child.

4. So you can continue making decisions for your child. When your child reaches the age of majority they are emancipated regardless of their functioning level. In order to continue making decisions for your child after he or she reaches the age of majority you will need to become your child’s guardian. You will have to go to court to become your child’s legal guardian after emancipation age. This is not something that happens automatically!

5. So you can have a say in who will become your child’s future caregivers. You want to be able to determine who will care for your child when you are no longer here. If you do not make this determination, or be part of the process for determining your child’s future caregivers, or successor guardian(s), this will be done for you and without your input after your demise.

6. Your child may lose valuable public benefits. If your child has a developmental disability, many of the services he or she will receive, once aged out of the school system, will be paid for by “means tested” public benefits. Thus, your child must have assets and income at or below the poverty level to be eligible. If your child inherits directly, even a small amount of money or real or personal property, he or she would probably be knocked off of those valuable benefits. Therefore, the use of an estate planning tool like a “Supplemental Needs Trust” is necessary to protect the priceless benefits.

7. Public benefits alone will not give your child the quality of life you want them to have. As stated above, eligibility for public benefits may allow your child to qualify and/or receive services once he or she ages out of the school system. Nevertheless, these public benefits will not pay for the “extra” items that you would want your child to have. For example: a television set, a video game, travel, supplemental care givers, companions, etc. A properly drafted Supplemental Needs Trust will allow your child to remain on the priceless public benefits that they require but to also receive the “extras” you would want them to receive.

8. You can put a financial plan in place. We all hear about the importance of saving for your child who is going to college. What about saving for your special needs child? It is extremely important that we put a financial plan in place that will allow us to fund a properly drafted Supplemental Needs Trust to supplement our child’s reliance on public benefits. Life insurance and other financial planning tools need to be explored with a special needs planning professional.

9. The cost of doing the planning is much less than the cost of not doing the planning. People are always concerned about having to use an attorney and the costs involved. The possibility of your child losing their public benefits and the possibility of leaving your child’s future caregivers with no direction will be a much higher cost that your vulnerable child will have to bear after your demise if you do not plan. This planning needs to be done correctly and by a highly qualified special needs planning attorney. Please visit the Special Needs Alliance,, to find a qualified special needs planning professional. This is not something every attorney or even a general estate planning attorney can do. You need to find a professional in your state that specializes in special needs planning so you can assure your child is protected. This is not something you want to bargain hunt for! Not doing the planning correctly can end up costing so much more than using the right qualified attorney

10. If you do not do the planning you will be leaving your child that you want to protect more than anything in the world in a vulnerable position relying on others to do the planning for your child without your input after your demise!

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