As the parent of a child with special needs, you must access your child’s healthcare records for various reasons. You may need access to medical records to manage your child’s medical needs or seek out new healthcare providers. You may need those records to submit or handle coverage disputes with insurance companies. Although parents should be able to access medical records for their minor children easily, this process is not always as straightforward as one might assume.
Accessing Children’s Healthcare Records
Up until recently, many parents of children with special needs were shocked to find out that after their children turned 12 years old, they needed their children’s consent to access their medical records. Under previous Illinois law, minor children between ages 12 and 17 had to consent to release their healthcare records to their parents. While this legal requirement typically was not an issue for children without cognitive limitations, it presented far greater barriers for children who had no legal capacity to consent.
Therefore, if their children didn’t have the legal capacity to consent to release their medical records, the parents’ only recourse was to get a court order to allow them access to their children’s records. This time-consuming and expensive process was yet another burdensome barrier for families with children with special needs. Fortunately, one mother of a child with Down’s Syndrome worked with her local state senator to close this loophole in the law and make life easier for families like hers to access their children’s medical records.
Deborah Gossrow Took Action
After Deborah Gossrow had to get a court order to make an appointment with a local hospital lab to see her 16-year-old son with Down’s Syndrome, she reached out to Senator Steve McClure (R-Springfield) to find a legislative solution. McClure stated that while getting initial momentum to support the bill was challenging, support quickly grew once other legislators began hearing Deborah’s story. As a result of Deborah’s efforts, Governor J.D. Pritzker signed Senate Bill 188 into law, effective January 1, 2024.
Senate Bill 188 amends the Consent by Minors to Health Care Services Act, 410, ILCS 210/2, to state that: “A parent who consents to the performance upon the parent’s child of a health care service under this Section shall be entitled, upon request, to inspect and copy the part of that child’s records related to the specific health care service for which the parent is treated as the child’s personal representative under HIPAA, 45 CFR 164.502(g).”
The bill also amends the Mental Health and Developmental Disabilities Confidentiality Act, 740 ILCS 110/4, to add that the personal representative of a recipient under HIPAA, regardless of the age of the recipient, shall be entitled to, upon request, inspect and copy a recipient’s record or any part thereof.
Under the HIPAA privacy rule, 45 CFR 164.502(g), “a person authorized (under State or other applicable law, e.g., tribal or military law) to act on behalf of the individual in making health care related decisions is the individual’s “personal representative.” Therefore, since a parent is a minor child’s “personal representative” for the purposes of HIPAA, the amendments to the Illinois laws now permit a parent to access their child’s healthcare records without their consent until the child turns 18. This change eliminates the practical difficulties that resulted when children between ages 12 and 17 could not legally consent to release their medical records to their parents.
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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.
