Many Centre County residents have a child in their family with special needs. 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 challenge comes 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 a child with special needs is often the same as it is for all children, so the chances of a parent passing away before their offspring is a real possibility. Planning for a child with special needs is not something to put off until tomorrow, because life happens and a parent can unexpectedly die at any time. Here are some “must-do” actions to consider.
• Be an advocate for your child in school. It is a federal law that every child be given a free and appropriate public education. This right can continue until age 21 but ends when the child graduates from high school. Educational rights include a number of ancillary services; be alert that budget cuts do not end mandated services. Termination of education can also be an abrupt ending of services that the child and family rely on.
• Work with a lifecare planner to determine a working plan of what your child will need in their lifetime, including medical, housing, financial and other needs unique to the child. Some children may not be able to live independently if something happens to their parents. Others may just need a little help or supervision.
• 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 children are not verbal. What are your aspirations for your child? What is the child’s social and religious outlook? What types of strategies work well in having a positive impact? Are there family or other resources that may not be obvious to someone coming into contact with the child without background information?
• 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. Also, the court may appoint someone else. Many adults who have a disability retain the capacity to appoint an agent. This is an inexpensive and private alternate to a guardianship, and should be considered.
• 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.
• Consider purchasing a life insurance policy that will cover the finances determined. One purpose of a special needs trust is to pay for things that Medicaid does not cover. Another purpose is to enhance the beneficiary’s lifestyle. These can be more expensive than a parent can afford.
Do you have a child who needs developmental help or special needs services? There are places you can turn to for help. If you take these six steps, you’ll be well on the way to making sure your child’s future is in good hands.