When Your Child with Special Needs Becomes an Adult: Is Guardianship Really Necessary, or Is an Alternative Enough?


Guardianship matters can be complicated. When parents care for a minor child with special needs, their legal authority to make decisions on the child’s behalf is unquestionable. The much more difficult questions come when that child turns 18 and becomes an adult, at least in the eyes of the law. At that point, parents must ask themselves whether their child has the legal capacity to make important decisions – including medical, financial, legal, and educational decisions – on their own or with some assistance. They also must consider whether their adult child is vulnerable to potential exploitation or being taken advantage of by others. The answer to these questions determines whether you should seek legal guardianship over your adult child with special needs or whether an alternative is sufficient to meet their needs.

While adult guardianship is necessary to protect some individuals with disabilities who are unable to make critical life decisions on their own, some do not need this degree of protection. In other cases, adult children with special needs find it psychologically difficult if they understand that a judge is taking away their legal rights to make decisions about their own lives. As a result, seeking less restrictive alternatives to guardianship may be appropriate in some cases.

Making Medical Decisions

The ability to make medical decisions is one of the major issues that arises once a child with special needs turns 18. However, some options can allow parents to continue to make or participate in their child’s medical decisions short of obtaining adult guardianship.

For instance, the Illinois Healthcare Surrogate Act allows certain individuals to make medical decisions under certain conditions for a person if they lack decisional capacity. Suppose an adult with special needs cannot understand and appreciate the consequences of a medical decision and communicate that decision as determined by a physician. No power of attorney is in effect. Certain individuals may act as “surrogate decision makers” for them in that case. The Act lists these individuals by order of priority: guardian, spouse, adult children, parents, adult siblings, grandchildren, close friends, and court-appointed guardians of the person’s estate. Therefore, in this instance, a parent may be able to make medical decisions for an adult with special needs without having guardianship, depending on the situation.

On the other hand, if the adult with special needs has decisional capacity but may need assistance in making those decisions, then the parent and child could have a supportive decision-making agreement under Illinois law. While the parent could not make any decisions for the child, the parent could assist the child in accessing, collecting, or obtaining information relevant to a decision, as defined by the supportive decision-making agreement.

Making Financial Decisions

Similar options exist for addressing financial decisions and issues for adults with special needs. For example, parents and children could have a joint bank account that allows the parent to monitor spending and look out for financial exploitation. This arrangement still allows adult children to handle their own money and make spending decisions, but in a way that parents can still supervise.

Setting up a special needs trust can preserve an inheritance or other funds for an adult child with special needs. Since a trustee must approve all disbursements, the individual has little control over the funds and, therefore, is much less likely to overspend or be vulnerable to financial exploitation by others.

Another option may be a durable power of attorney. If the adult with special needs has the decisional capacity or the ability to know what they are signing and why, they can sign a durable power of attorney for property. This document authorizes someone else, such as a parent, to make financial decisions on their behalf. However, it does not take away the individual’s right to make financial decisions if they want it. A power of attorney allows parents to help an adult child make independent financial decisions, but it does not protect the individual against financial loss or exploitation.

Making Other Decisions

Of course, adults with special needs must make many other decisions outside the realm of medical and financial decisions that the previously discussed alternatives will not cover. For example, some agencies, such as the Illinois Department of Human Services (DHS) and the Social Security Administration (SSA), have delegation / representative forms that individuals with special needs must sign to allow another person to handle their affairs with those agencies. A durable power of attorney won’t substitute for the SSA’s form, which the adult with special needs must also sign.

Many situations also are not so straightforward. For instance, some adults with special needs may have decisional capacity but may refuse to sign the documents or may not have the ability to sign the documents. Others may have capacity but also may have mental health or other issues that make them a danger to themselves or others at times. Finally, others may get into continual legal or personal trouble that makes it difficult to handle on their own, even if they have decisional capacity. In those cases, particularly when other efforts have failed, filing for guardianship may be the only option.    

Call Rubin Law For Guardianship Assistance 

Rubin Law is the only Illinois law firm to dedicate itself exclusively to providing compassionate legal services for children and adults with special needs. We offer unique legal and future planning techniques to meet your family’s individual needs.

Call us today at 866-TO-RUBIN or email us at email@rubinlaw.com to learn more about the services we can offer you and your family.