Healthy Kids     K-12    

7 Must-Do's for a Parent of a Special Needs Child

Preplanning helps ease a great burden

Many HudsonValley parents are parenting a special needs child. It’s a roller coaster ride for parents who have to accept this lifelong situation, and adjust the expectations they’ve created for their child’s future. But with this devastating news comes the an even tougher task of making sure the child’s future is in good hands; putting a plan in place goes a long way to peace of mind.

“The life expectancy of special needs kids is the same as it is for all kids,” says Bernard Krooks, founding partner of the law firm Littman Krooks LLP and a nationally-recognized expert in all aspects of special needs planning. He adds, “And so the chances of a parent dying before their special needs kids is a real possibility. Planning for your special needs child is not something to put off until tomorrow, because life happens, and a parent can die tomorrow.”

Bernard Krooks has provided this outline for parents of special needs kids. Time and time again, parents have said to Krooks that having such a plan has lifted an enormous burden off their shoulders.
  • Work with a life care planner to determine a working plan of what your child will need in their lifetime, i.e., medical, housing, financial, etc.
  • Consider purchasing a life insurance policy that will cover the finances determined.
  • Create a “letter of intent,” which is a document of all the parenting you do for that child or special things the child requires since some special needs kids are not verbal. Examples include, “does your child like a special pillow,” or “does your child like a glass of milk before bed?”
  • Once a child reaches 18, the law assumes they are capable of making their own decisions unless there is an appointed legal guardian. This person would have access to medical and financial documents; decide where the child lives, and where they go to school  It may not necessarily be a sibling as sometime in the future that sibling may marry and new family members may not be so receptive. If one is not in place, the court would appoint someone.
  • Create a “special needs trust” for your child, thereby preventing your child from receiving your financial estate upon your death, and possibly make them ineligible to receive special programs. 
  • Be an advocate for your child in school as it’s a federal law that every child be given a free education. If your school district cannot meet the needs of your special child, they can be bussed to another district that will.
  • Despite the economy, there is still federal and state money available. It’s just knowing how to navigate the details.
Many of these points require the expertise of a special needs attorney. Visit the Special Needs Alliance for more information and support groups in our area.