Illinois Supported Decision-Making Agreement

When a young adult with an intellectual or developmental disability turns 18 in Illinois, families often assume guardianship is the only option. Since 2022, it hasn't been. The Illinois Supported Decision-Making Agreement Act (755 ILCS 9) created a formal, non-judicial alternative that lets adults with disabilities keep their full legal rights while designating supporters to help them navigate decisions.

No court involvement. No filing fees. No finding of incapacity.

Who Qualifies

The Act applies to adults whose intellectual or developmental disability originated before age 18 (for intellectual impairments) or age 22 (for broader developmental conditions), and is expected to continue indefinitely. Eligible diagnoses include Down syndrome, autism, cerebral palsy, and intellectual disabilities as defined under the Mental Health and Developmental Disabilities Code.

The critical point families miss: Section 15 of the Act explicitly guarantees that a diagnosis of intellectual or developmental disability — or a non-traditional communication style — does not void the presumption of capacity. The person is presumed capable of making their own decisions. The SDMA simply formalizes the support structure around that capacity.

How It Works

The person (the "principal") selects trusted supporters to help them gather information, understand their options, and communicate decisions. The supporter doesn't make decisions for the principal — they help the principal make their own.

An SDMA can cover specific decision domains: healthcare, finances, education, housing, employment. The principal decides which areas they want support in and which they don't.

Execution Requirements

The signing rules are straightforward but specific:

• The principal and supporter must both sign and date the agreement
• Two witnesses age 18 or older must be present at signing
• The supporter cannot serve as a witness
• No notarization is required
• No physician's statement is needed

The agreement must substantially follow the statutory form. The Department of Disability Advocacy and Guardianship (formerly the Guardianship and Advocacy Commission) provides the template.

Who Can't Be a Supporter

The Act prohibits several categories of people from acting as supporters:

• Employers or employees of the principal (unless they're immediate family)
• People providing paid support services (unless immediate family)
• Anyone working for an agency financially responsible for the principal's care
• Anyone listed as ineligible on the Health Care Worker Registry
• Anyone subject to a civil or criminal order prohibiting contact
• Anyone convicted of a sex offense, aggravated assault, fraud, theft, forgery, or extortion

These restrictions exist to prevent conflicts of interest that could compromise the principal's autonomy.

Getting Institutions to Accept It

The biggest practical hurdle isn't creating the SDMA — it's getting banks, hospitals, and schools to honor it. Under 755 ILCS 9/40, a supporter is authorized to help the principal access information relevant to decisions covered by the agreement. But the SDMA alone doesn't grant access to protected records.

The principal needs to execute separate releases:

• Medical records: A DAG Non-School Release form covering HIPAA (45 CFR § 164.508) and the Illinois Mental Health and Developmental Disabilities Confidentiality Act
• Educational records: A DAG School Release form covering FERPA and the Illinois School Student Records Act
• Substance abuse records: Separate consent under 42 CFR Part 2

Without these companion documents, a hospital or school can legally refuse to share information with the supporter even though the SDMA itself is valid.

Review and Revocation

Under recent amendments (HB 5365), the SDMA must be formally reviewed by the principal and supporters every two years and updated using the same execution requirements as the original. The principal can revoke it at any time — by destroying the document, signing a dated written revocation, or verbally expressing intent to revoke in front of two witnesses.

SDMA vs. Guardianship

The distinction is structural: an SDMA preserves the principal's legal capacity entirely. They retain the right to vote, marry, sign contracts, and make every decision not covered by the agreement. Guardianship — even limited guardianship — involves a court proceeding and transfers some or all decision-making authority to the guardian.

Recent Illinois legislation now requires probate courts and GALs to explicitly investigate whether an SDMA or other less-restrictive option would work before appointing a guardian. If a validly executed SDMA already covers the person's support needs, the court has less justification for imposing guardianship.

The Illinois Adult Guardianship & Alternatives Guide walks families through the SDMA process alongside powers of attorney, educational delegation, and guardianship — with a capacity assessment worksheet to determine which combination fits the person's actual needs.

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