Parents of special needs children are required to make many, often serious, decisions about their children’s healthcare, a job that only gets harder if they can’t get access to test results and other medical records. In Illinois, sometimes those parents aren’t able to get access, even if the records are from tests and procedures that required the parents’ consent to be performed. State Senator Steve McClure (R-Springfield) and Representative C.D. Davidsmeyer have passed legislation through the General Assembly designed to help with this issue.
“Parents who have children with special needs should have timely access to test results and medical records,” said Senator McClure. “Parents shouldn’t have to resort to legal action to get access to their children’s health records, especially when tests and procedures required their consent in the first place.”
Under current Illinois law, parents have access to medical records for children under the age of 12. However, they may be denied access to records and test results for children 12 -17 years of age, even if the records are from tests and/or procedures that required parental consent to be performed. Once the child turns 18, if they are declared a developmentally disabled adult, parents can once again get access.
Senate Bill 188, filed by Senator McClure, closes the loophole for special needs children aged 12 – 17.
The issue was brought to the legislators by a constituent, who has a child over the age of 12 with Down Syndrome. When the parent tried to obtain lab results for her child, she had to hire a lawyer and file a petition requesting access.
“This Bill will put in place an exception for children with special needs while in the care of the parent or guardian. It will also address the importance of access should I pre decease my child as a widowed single parent, and my child is then placed in my parents’ care as next of kin guardians. It will help eliminate challenges or obstacles in continuing my child’s health care needs at an optimal level.,” said Deborah Gossrow. “There aren’t enough words to express my gratitude for the Senator’s generosity in agreeing to side with me on creating amendments to which will ultimately secure the goal of recognizing this being in the best interest of both the child and their family in more than one capacity.” The legislation has now passed the Illinois General Assembly and awaits the signature of the Governor to become law.