A mother in Normal called me a few weeks before her son's eighteenth birthday, upset and a little panicked. The hospital had just told her that once her son — who has a significant developmental disability — turned eighteen, she would no longer be able to make his medical decisions or even see his records without legal authority. She had cared for him every day of his life and assumed that would simply continue. The law saw it differently.
This catches good, attentive parents off guard all the time. On the day your child turns eighteen, the law treats that child as a legal adult with full authority over their own decisions — even if their disability means they cannot actually make those decisions safely. The parental authority you have always had ends automatically. If you have not put the right legal tools in place beforehand, you can suddenly find yourself locked out of medical, financial, and educational decisions for the person you know best.
The good news is that everything I am about to describe can be handled in advance. The work is much easier and much less stressful when it is done in the months before the birthday, not in a crisis afterward.
Guardianship of an adult with disabilities
For a young adult who cannot make or communicate responsible decisions about their own care or finances, Illinois provides for guardianship of an adult with a disability. A court appoints a guardian — often a parent — who is authorized to make decisions on the person's behalf. There can be a guardian of the person, who handles medical and personal matters, a guardian of the estate, who handles finances, or both, and the guardianship can be tailored to the individual's actual level of need rather than being all-or-nothing.
Guardianship requires a court petition, a physician's report describing the disability, and a hearing. It takes time. Because the process can stretch out, I tell parents to start well before the eighteenth birthday — ideally several months ahead — so the authority is in place the moment it is needed.
Guardianship is not always the right answer for every young adult. For someone with milder limitations, less restrictive alternatives — supported decision-making, or simply the powers of attorney described below — may serve better and preserve more of the young person's independence. Part of what we do is help you figure out which level of involvement actually fits your child.
Powers of attorney for those who can sign
If your young adult has enough capacity to understand and sign documents, powers of attorney can accomplish a great deal without a court at all. A power of attorney for health care lets your child name you to make medical decisions and access records. A power of attorney for property lets you help manage finances. These are simpler and less expensive than guardianship, but they only work if the young person genuinely has the capacity to sign them. When that capacity is absent, guardianship is the path.
Protecting public benefits — and the trap of an inheritance
Here is where parents make the most expensive mistakes. Many adults with disabilities rely on Supplemental Security Income (SSI) and Medicaid. Those programs are means-tested, with a very low resource limit — generally $2,000 in countable assets for an individual. If your child receives money directly — a birthday gift of any size, a legal settlement, or worst of all, an inheritance from a well-meaning grandparent — it can push them over the limit and cut off the benefits they depend on.
This is why leaving money to a disabled child "the normal way" can do real harm. The fix is a special needs trust. A properly drafted third-party special needs trust holds assets for your child's benefit without those assets counting against SSI or Medicaid eligibility. The trustee can use the funds to improve your child's life — therapies, equipment, travel, and other things benefits won't cover — while preserving the benefits themselves. A trust you fund with your own money (a third-party trust) does not carry a Medicaid payback requirement; a trust funded with the child's own money, such as a settlement, generally does. Getting this distinction right matters, and it is easy to get wrong without guidance.
If you have other relatives who plan to leave something to your child, talk to them. The most common way a special needs plan gets blown up is a loving grandparent naming the child directly in a will instead of directing the gift to the trust.
ABLE accounts
Illinois families also have the ABLE account, a tax-advantaged savings account for people whose disability began before a qualifying age. Money in an ABLE account — up to $100,000 — does not count against the SSI resource limit, and the account can be used for a wide range of disability-related expenses, including housing, education, and transportation. An ABLE account works alongside a special needs trust, not instead of it; together they give your child both flexibility and protection.
A short list of what to do before the birthday
Decide whether guardianship, powers of attorney, or a less restrictive arrangement fits your child, and start the process early. Make sure any money intended for your child flows into a properly drafted special needs trust rather than to the child directly. Consider opening an ABLE account. And review your own estate plan so that what you leave behind protects your child instead of disqualifying them.
You have spent eighteen years giving your child understanding, answers, and direction. The law just requires you to formalize that role in a new way. If you are approaching this milestone with a child in Bloomington-Normal, Lincoln, or anywhere in Central Illinois, I would be honored to help you get it right. You can learn more about our estate planning approach and reach out whenever you are ready.