You are a great parent; you get to IEP meetings prepared and take notes. You attend support group meetings and fund raising events for special need children, but have you take a few days to sit down and plan for your child’s long term care? It is shocking to discover how many parents have not even written a simple will let alone made any provisions for the child or children they will be leaving behind.
Granted long term care planning can sound scary, and it is hard to know where to start. I am (by no means) a financial whiz, but having a twenty year old has made me face reality and make some long term provisions. To get you started here are the very basic basics.
1. Write a Letter of Intent. You need to have a will, but even if you have not found the time to write a will, a Letter of Intent is critical. This letter is your guide book to what is required in caring for your child. You will need to list all doctors, their contact information, as well as any other therapist, teachers, professions you see for any reason, or learning center information. Think about all the places you take you child in a month, and write this down, then think of what you do each year, add this. Write down what your child likes, dislikes, what they can and cannot be exposed to. If you child as allergies, you may know, but will the caregiver know milk makes you child swell up? Make sure you list all these issues in the letter. This letter can be included as part of the will, but can also stand alone if you do not yet have a will in place.
2. Set up a Special Needs Trust. Here is where most of us glaze over and panic. You will need to contact an attorney for this part. I do suggest you find an attorney that specializes in setting up trust for special need individuals. At this stage you will be protecting any assets that will pass on to your special needs child. This is so your assets will go to be used for the care of your child and not become a liability keeping your child from being eligible for government benefits. This too, should become a part of your will, but again a Special Needs Trust can stand alone.
3. Think about Life Insurance. Look at you assets right now today. Look at you current financial situation with honest eyes. How much debt you do have? How much savings, investments? What would be left after your debts are paid and funerals covered? Now consider a life insurance policy if you do not already have one in place. This is one means for making sure your child has sufficient assets after you are gone. How much will you need and how much you can pay out each month to cover the cost of premiums? Many national life insurance companies specialize in helping families with special needs to make these decisions. Make sure you use a reputable insurance company and interview you agent before you choose to use this individual. Ask other parents for a reference. Make sure you include any insurance you purchase into your child’s special needs trust.
4. Remove your child’s name from any assets. Yes, I know this sounds horrible. The reason you do not want your child’s name on say your house or car, is that can keep your child from qualifying from any government benefits. Medical care and housing could become compromised without such benefits. There are two different avenues of trust here. A first party Special Need Trust means that the assets you set aside can be used for your child’s care, without disqualifying them from any government benefits. However, upon the child’s death any remaining trust will be used to repay Medicaid. Third party trust where the benefits go to a third party, a sibling or other individual for the use and support of your child, will not be used to repay Medicaid after the child dies. This is something you will wish to discuss with your attorney, and you will want to choose a person to over see the assets left behind, if you have a person of trust.
5. Guardianship for your adult child. Yes, before you blink twice, your precious little one will be grown up. While you were busy running to physical therapy and shopping for that one style of blue jeans you child has to have, they grew up. Before they turn 18, get your paper work in gear to become their guardian. If your child is unable to make their own financial or medical decisions, you will need to continue to do these things. Without becoming a legal guardian you will have no legal rights to make these choices. Because the process for applying for guardianship differs from state to state, you will need to talk to an attorney to see what the procedure is and how to follow the guidelines. If you have yet to find an attorney, you may contact any department in your state that deals with intellectual or developmental challenges, such as The Arc for help.
It’s daunting to think of life for your child without your guiding hand. For your own peace of mind, take this year and make sure your child will be able to live and thrive as you wish and they are accustom once you are no longer here.