What about my disabled adult child if I become incapacitated or die?

Parents who care for an adult child with a disability may want to set up a special needs trust and designate a guardian in case they die before their child.

Caring for an adult child with a disability in Illinois is often challenging in the best of circumstances. Many parents worry about what might happen to their child if the parents die or are otherwise unavailable to provide care.

Prioritize estate planning

Estate planning is a must for peace of mind. Options include setting up a trust so that the adult with the disability can continue to receive financial support no matter what. While there are many types of trusts to choose from, a special needs trust is common in the cases this article discusses. It helps the disabled adult keep valuable government benefits, and a trust reduces estate taxes and can keep an estate from going through probate.

Bridge gaps

Even if legal matters go smoothly after an incapacitation or death, there is still a gap of time. Parents should keep that gap in mind as they approach estate planning. Who should the adult child stay with (if anyone)? What medications might the adult child need to take?

Choose the right kind of life insurance

Life insurance is a great way to get money into a special needs trust, especially if the insurance is permanent life insurance. Products such as term life insurance likely will not work. There are also considerations if one parent does not work, if parents are divorced and so on.

Understand what may or may not be best in a will

It is common for a parent to leave retirement funds to his or her spouse, or children. However, in the case of an adult child with a disability, such an inheritance could lead to loss of government benefits that financially support the child. It may be best to set up a special needs trust as the party to inherit these funds.

Estate planning is also an opportunity for parents to think about guardianship matters such as designating a guardian or a group of possible guardians in a will. Parents may already be their child’s guardians, meaning that they are allowed to make health care and financial decisions, among others.

A special needs trust may do just fine in lieu of guardianship, depending on the situation, or parents can take the time now to chat with potential guardians, assess their interest and draw up the necessary paperwork. Otherwise, the court may choose the guardian.

It is often difficult for parents in Illinois to think about what happens if they become hurt or die. However, when they have an adult child with a disability, estate planning can uphold the child’s quality of life. Parents (or legal guardians/family members such as siblings) can get started by contacting an attorney.