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Plans to discontinue the Iowa Youth Risk Behavior Survey and a new barrier for surveying Iowa students pose a threat to data collected on youth behaviors, advocates say, specifically young transgender Iowans.

The Iowa Department of Health and Human Services (HHS) has no plans to administer the Youth Risk Behavior Survey this academic year, the first time since the survey started in 1991.

In a letter sent to Youth Risk Behavior Survey advisory committee members, Robert Kruse, the state medical director for the Iowa Department of HHS, announced Iowa will not participate in the 2023 Center for Disease Control and Prevention鈥檚 (CDC) youth risk behavior survey.

鈥淭he Iowa Department of HHS will not be participating in the CDC鈥檚 Youth Risk Behavior Survey in 2023 in order to focus our efforts on maximizing the state administered Iowa Youth Survey (IYS) and improving survey participation,鈥� Kruse鈥檚 Jan. 27 letter to YRBS advisory committee members said.

The nationwide survey overseen by the CDC is administered every two years and asks students about their behaviors and relationships with authority figures, drugs, alcohol, sexual activity and gambling, to name a few.

Although students in Iowa will still be offered the IYS, they can not take it unless a parent has seen the survey in advance and given permission for their student to take it.

Parental permission

, signed into law by Gov. Kim Reynolds on May 26, requires that students must receive permission from their parents before taking a survey at school. The law prevents students from taking surveys 鈥渄esigned to assess the student鈥檚 mental, emotional or physical health that is not required by state or federal law鈥� without first acquiring the written consent of the student鈥檚 parent or guardian.

Parents must receive at least seven days notice of the survey, as well as a copy of the survey.

The law also containing written or visual sex acts, prohibits schools from teaching about 鈥済ender identity鈥� or 鈥渟exual orientation鈥� before sixth grade, prohibits a student from using a name or pronoun than they were given at birth and prevents teachers from knowingly providing 鈥渇alse or misleading鈥� information on a child鈥檚 gender identity to their parents.

Jenn Turner, chapter chair for the Polk County Moms For Liberty, sees student surveys as a way for young people to get ideas about things they may not have thought about before.

鈥淲e have found that many parents are not aware of what questions are being asked,鈥� Turner said. 鈥淚t ranges from what vegetables you eat to how many sexual partners to if you have considered suicide for children as young as 11. Some parents may determine that these questions are too mature, or cover topics their children are not ready for or do not understand.鈥�

Turner and Moms For Liberty support the recent law change, saying that it gives control to parents and allows for more transparency about what is going on in school.

鈥淧arents are the number one advocates for their children,鈥� Turner said. 鈥淭hey should ultimately be making these decisions for their children. This law provides another tool to help parents understand what is presented to their children in school.鈥�

Advocates of the IYS say this law will limit participation and usable data. The extra step of taking home a permission slip and having it signed and returned to a classroom will keep some students from taking the survey, in addition to parents who do not permit their children to take the survey.

Anne Discher, executive director of Common Good Iowa and member of the Iowa YRBS advisory committee, acknowledges permission from parents during school registration as reasonable but believes useful data could be harder to collect with permission required for individual surveys throughout the year.

Parental permission could skew results in another way, according to Discher.

鈥淐ertainly one might assume that the types of parents who would opt out might have things in common,鈥� Discher said. 鈥淚t could skew the survey and I think generally speaking the concern would be that participation would be so low you might not get useful data anyway.鈥�

In a Feb. 23 committee meeting for Senate File 496, State Sen. Herman Quirmbach raised a potential unintended consequence he sees with parental permission.

鈥淭he unintended consequence of that may be to protect child molesters,鈥� Quirmbach, D-Ames, said. 鈥淚f a survey to a student asking about that student鈥檚 mental state or their social state, if the parent can deny their student the ability to participate in that survey, then an abusive parent can use that denial to help shield them from any consequence of their child abuse.鈥�

The surveys are anonymous, but survey data could skew if Quirmbach鈥檚 speculation is correct, ultimately affecting future legislation and policy decisions.

Data disaggregation

Surveys like the risk behavior survey and the IYS are used by health departments, educators, lawmakers, doctors and community organizations to make policy decisions, direct campaigns and give direction to research.

The most recent risk behavior survey asked students about their gender identity; the IYS did not.

According to Discher, one of the goals of the Department of HHS in the past was to increase participation in student surveys to allow for the disaggregation of data.

鈥淚t was a strong goal to be able to disaggregate it by race and ethnicity, for example, or by LGBTQ+ status,鈥� Discher said. 鈥淭he conversations we had always had were how can we get more schools to participate so we can have better data for subgroups.鈥�

Eventually, there was a sense of pushback contrary to the former beliefs and goals of the department, Discher says.

鈥淚 find that this pushback which came from somewhere in the department or maybe not in the department,鈥� Discher said. 鈥淚 don鈥檛 know where the push for all of this came from, but it is very much counter to all of the work that we had seen the department do up to this point, which was try to get more data, better data, to disaggregate the data so they could really understand what was happening with youth in Iowa.鈥�

According to Kruse鈥檚 letter to the committee, the Iowa Youth Survey will be revised, but the revisions are not currently public, if finished. It is unclear if the IYS will enable disaggregation of data for students who identify as transgender.

鈥淚n advance of IYS in the fall of 2023, HHS will conduct a comprehensive review of survey administration,鈥� Kruse said. 鈥淢ost importantly, we are reviewing the analysis-to-action strategy and how HHS can tailor the data collection to inform how we meet the needs of Iowa youth, families, schools and communities.鈥�

Without the Iowa youth risk behavior survey, and if the IYS is not revised to include a question about gender identity, disaggregating data for trans youth will not be possible.

鈥淚 find it sad that that鈥檚 a piece of data that we are going to lose,鈥� Discher said. 鈥淚 find it kind of cynical that the state Legislature took all of these moves to make life worse, in particular for trans kids. To deny them gender-affirming care, to make them feel less like they鈥檙e an important member of their community and now we aren鈥檛 going to collect data on mental health for that group.鈥�

Although the letter sent to YRBS committee members stated Iowa would not participate in the risk behavior survey to focus efforts on maximizing the IYS participation, the survey switch-up feels more intentional than maximizing efforts, according to Discher.

鈥淚t is very hard for me to look at it and not understand it as part of a larger anti-trans push in our state,鈥� Discher said. 鈥淚n the Legislature, we passed a lot of very punitive, harmful bills and now we鈥檙e going to stop collecting data on the well-being of the kids that they鈥檙e harming. Did anyone sit and think of it in that exact way? I don鈥檛 know, but it鈥檚 very hard to not interpret it that way.鈥�

The 2021, IYS did include a , with answer options of straight, gay or lesbian, bisexual, another identity or not sure.

Explaining the examinations

The survey was first administered in 1991, with Survey participation peaked at 47 four times; 2009, 2011, 2013 and 2015. 

Iowa will be one of seven states not participating in the survey in 2023, joining Colorado, Idaho, Florida, Minnesota, Oregon, Washington and Wyoming.

The reasoning for participation varies from state to state and many states have their own survey as a replacement or in addition to the CDC鈥檚 survey.

According to , the youth risk behavior data helps health departments, educators, lawmakers, doctors and community organizations to inform school and community programs, communications campaigns and other efforts. The survey measures health-related behaviors and experiences that may lead to death and disability among youth and adults.

Although the IYS asks similar questions as the risk behavior survey, IYS is only taken statewide, so results cannot be easily compared among other states. Data from the IYS, though, can be broken up into smaller regions of Iowa, compared to the risk behavior survey, which gives data for youth in the state as a whole.

鈥淭he national survey only reports state-level data which makes it impossible to identify areas of the state with the greatest needs,鈥� Alex Carfrae, public information officer for the Iowa Department of HHS said in an email response to the Iowa Capital Dispatch.

IYS data is reported and analyzed at multiple jurisdiction levels, allowing more specific, targeted decisions to be made for specific areas such as counties, judicial districts and Area Education Agencies.

The two surveys have a history in Iowa, with the youth risk behavior survey taken every other year since 1991 and the Iowa youth survey taken every other year since 1999.

The IYS is answered by students in grades 6, 8 and 11, where the youth risk behavior survey has only been offered to students in grades 9-12. The CDC does offer a middle school version of the youth risk behavior survey, but .

is part of States Newsroom, a network of news bureaus supported by grants and a coalition of donors as a 501c(3) public charity. Iowa Capital Dispatch maintains editorial independence. Contact Editor Kathie Obradovich for questions: [email protected]. Follow Iowa Capital Dispatch on and .

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