Illinois bill seeks more transparency on adoption records

SPRINGFIELD — Ed Izenstark inherited Huntington’s disease from his biological father, but he only found out after the fatal nerve disorder began to show itself and after months of frustrating and costly efforts to learn more about his origins.

The 30-year-old father of three from Batavia was hospitalized last May with severe stomach pains, nausea and involuntary twitching that his doctors couldn’t explain. Suspecting it could be genetic, Izenstark sought more information about his background but had a hard time getting it from state adoption agencies. In February, he finally learned that his birth father had the disease. On Friday, his fears were confirmed that he did too.

“(The information) should be available to anyone, if it’s yours. But it’s not yours. It’s the state’s and the state decides,” Izenstark said.

The Illinois House is considering a measure that would allow agencies to let people know the reasons they were put up for adoption and other information that wouldn’t identify their birth parents, including details of their medical histories. Its sponsor, Rep. Sara Feigenholtz, a Democrat from Chicago who was adopted herself, said the changes would be a real benefit to adult adoptees.

“Historically, this information has always been contingent on how the adoption was finalized,” Feigenholtz said. “I hope this bill continues to help adoptees get answers to the questions they have because they are legitimate.”

The House Adoption Reform committee advanced the bill last month, and the full House is expected to vote on it this week.

Feigenholtz, who pushed through legislation a few years ago that gave adult adoptees access to their original birth certificates, said the state’s adoption laws still don’t do enough to meet their needs.

Margaret LaRaviere, director of the Cook County Office of Adoption and Child Custody Advocacy, which investigates adoption cases, said adoption agencies are legally allowed to release non-identifying information to adoptees and adoptive parents. That could include occupation, age, race and ethnicity of birth parents and the existence of biological siblings. Agencies can also disclose medical and mental health histories, but only if the biological parents reported this information, she said.

But the amount of information released by public and private agencies varies.

“It’s tough. You want to respect the biological parent, but you also want to help adult adoptees who are desperate for information,” LaRaviere said.

The letter the agency sent Izenstark in February included information about his biological parents’ physical appearances, occupations and hobbies, in addition to brief summaries of their medical histories. Under the description of his birth father, it said: “Reported medical and mental health history also includes anemia, diabetes, Hunting (sic) Chorea a nervous system disorder (other family members had it as well).”

Izenstark, who was an insurance agent before he had to go on disability because of his illness, said he spent about $1,500 on his efforts to learn more about his biological roots and about $3,000 on genetic testing to determine if he has Huntington’s. He said the legal changes that Feigenholtz has proposed might have made things easier, and that although LaRaviere was helpful, he wished “there was more that could be done and less red tape.”