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Illinois Life Span Program

Adult Guardianship and Decision-Making Options

Last Updated May 2024

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Table of Contents

Adult Decision-Making Options for Individuals with IDD (Intellectual and Developmental Disabilities) and Their Parents (State of IL only)

Parents of children with disabilities under 18 can make all medical, financial, and educational decisions on their child’s behalf. They are automatically their child’s legal guardian.

However, once a young adult in Illinois turns 18, they are legally considered an adult and are expected to make their own decisions. In fact, parents are not legally allowed to see financial or educational records after their child’s 18th birthday without their young adult’s consent and it is even earlier regarding medical decisions.

Common life events such as refilling prescriptions, making and attending medical appointments, or attending your young adult’s IEP (Individualized Education Program) meeting can be impacted because the legal right of the parent to take these actions on behalf of a child is no longer legally guaranteed.

Therefore, youth with disabilities and their families/caregivers will need to make decisions before the age of 18 about the type of support they will need to make these important decisions once they are an adult.

The answer is not the same for every person with disabilities. There are a wide range of options for decision-making supports in Illinois. The right answer will be based on the individual’s interest and their functioning level. Ideally, the individual should have as much choice and voice in these decisions as possible. Options include Supported Decision-Making, varying levels of Guardianship, and the Powers of Attorney.

Supported Decision-Making

Supported Decision-Making puts the decision-making power into the hands of the person with IDD. They maintain all their legal rights. One or more Supporters are designated to assist with paperwork, phone calls and other administrative tasks, but these Supporters do not make decisions for the person. Please note that Supported Decision-Making is an option only for people in Illinois with IDD.

Supported Decision-Making links from the Illinois Guardianship and Advocacy Commission:

Center on Youth Voice, Youth Choice for youth with disabilities. Research, advocacy and teaching about alternatives to guardianship. Home – Center on Youth Voice, Youth Choice (youth-voice.org)

Guardianship

Guardianship means having the legal responsibility to make decisions on behalf of another person. Because having Guardianship over a person takes legal decision-making rights away from them, it should be pursued only when necessary and when other options are not sufficient.

Note: Every county in Illinois has different forms and procedures for guardianship. It is best to consult with your county’s court system.

  • Equip for Equality is Illinois’ Protection and Advocacy agency and provides this information about Guardianship: Overview – Equip for Equality
  • This link to the Illinois Guardianship and Advocacy Commission FAQs describes the process for applying for guardianship of an adult who is disabled. Guardianship FAQ
  • This document is a longer version of the above information but provides more detail: GuideAdultGuardianship2011

Powers of Attorney (POA)

Having Power of Attorney is the least restrictive step to take for parents/caregivers to have decision-making authority in matters of state and federal benefits, education, and finances. Multiple separate Powers of Attorney documents would need to be created and signed to cover all these areas and others.

Bear in mind that POA (Powers of Attorney) may not work for every person with IDD, so please consult with a legal professional if considering this option.

Special Needs Alliance website: an article on Powers of Attorney and Guardianship. Powers of Attorney and Your Child with Special Needs – Special Needs Alliance

Note: Public benefits such as Medicaid and/or Social Security programs have their own separate forms to complete to become your adult child’s approved representative.

What is Right for My Young Adult with IDD?

It is recommended that families attend webinars, training, and/or receive legal consultation (if needed) prior to making such a personal decision. In addition to private attorney/firms, there are state agencies, legal clinics and law schools who may assist.

*Please note that information provided in this Fact Sheet is not intended to provide legal advice.

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