Heather Sievers is the founder of Advocates for Iowa’s Children and an Altoona mother of a child of rare disabilities. Photo of Heather with her daughter Rowan was provided by the author and published with permission.

I am speaking out to educate our communities and give voice to thousands of families across the state who are begging our Iowa legislators to stop the Area Education Agency (AEA) education reform bill from being passed into law during the 2024 legislative session.

Having spent years building my professional experience in effective health care transformation, performance and process improvement in large systems, I know we are not doing this the right way. We are not taking time to perform a credible and thorough study to determine what reform is needed before enacting a bill. A change of this magnitude cannot be rushed, or it will inevitably fail. The risk is too high to gamble on our children’s well-being and their futures. 

Any harm to our children as a result of the decisions made this legislative session will never be forgiven, nor forgotten. Our integrated AEA system works and is a national treasure. Many states aspire to implement a system like we have, and my personal story demonstrates that our system works. 

A PERSONAL STORY: RAISING A CHILD WITH DISABILITIES

I still remember the day my husband and I received our daughter’s diagnosis of Smith-Magenis Syndrome on March 2, 2020, after years of waiting. The doctor handed me a 45-page packet of literature and looked very sad as he broke the news that only four other children in Iowa had this diagnosis. He explained the condition is progressive and would likely worsen over time, and that many children have significant heart, kidney, and spine issues. All have intellectual disabilities, global delays in talking, walking, and speech with a high percentage of children experiencing impaired vision and hearing that can progress to blindness or deafness over time. 

The literature talked about significant behavioral issues and sleep disturbances, and many families struggling to keep their children safe from self-harming behaviors. My heart was absolutely broken. How could this be happening to my baby? I knew this was going to be a long road. After I cried for three days straight, I got myself together and knew I had the AEA behind us to help Rowan on her journey.

I was born and raised in rural Iowa. After obtaining a dual master’s in counseling psychology and clinical nurse leadership, I moved up to Minnesota in 2014 to marry my now-husband Britt Sievers and start our family. After we had our beautiful daughter Rowan in 2017, it quickly became clear that Rowan would need significant support. We also learned that obtaining a diagnosis for our daughter would prove quite difficult.

Rowan had failure to thrive and trouble swallowing her food. She struggled to recover from illnesses, compared to other children, and was experiencing global development delays. My family made the hard decision for me to quit my nursing job so I could care for Rowan. To make ends meet, my husband was forced to pick up traveling construction work. To keep costs down and to ensure my family could stay together, we sold our house and most of our belongings to move into a camper and travel while I dedicated my energy to helping Rowan get healthy. 

As we were on the road, I realized that even with my medical background, Rowan’s needs were way beyond my capacity, and I couldn’t get expert support when we needed it. My daughter was wait-listed up to nine months to get in to see specialists, like a neurologist, pediatric developmental pediatrician, pulmonologist, and more.

After about 18 months on the road, we came back to Iowa to be closer to family. Even though we were still residing in our camper, Heartland Area Education Agency stepped in to help Rowan when we could not get a diagnosis or timely support for her. 

HOW THE AEA WORKS AND GIVES FAMILIES HOPE

The AEA was the magical group that showed up on our doorstep to help Rowan. It didn’t matter that we were still in our camper and did not have an established residence yet. They immediately started assessments and therapies in our home. 

Rowan had a significant sensory disorder, which made all movement very scary to her. She was delayed in walking and talking, and had speech and swallowing challenges. The AEA brought in sensory devices like a scooter board with wheels that was low to the ground to help her adjust to small movements and not be as scared. They taught us how to help her eat safely. They brought in a pediatric walker and helped her learn how to walk and go up and down stairs without falling. 

Since Rowan was non-verbal, the AEA brought in tools to help us learn alternative ways to communicate with her, as well as an abdominal binder to help her speech by supporting her core strength. 

When Rowan turned 3 years old, the AEA professionals helped get her into Early Access, which supported a seamless transition into early pre-school. The AEA, Rowan’s therapists and professionals who knew her best, continued to serve her in her school setting, including training and educating the teachers on her needs and what was working best to help her progress. 

Rowan would not be where she is today without the early intervention provided through the AEA. She is on an individualized education program (IEP) developed with the AEA and her teachers. The IEP allows her to spend most of her time in the general education classroom, where she is doing mathematics, reading, starting to verbalize speech, and getting awards for the best dance moves in gym class. 

The AEA helped Rowan overcome a lot of challenges that the literature said she would not overcome. There is nothing more exciting for a parent than seeing your child graduate from one of the AEA services. By kindergarten, Rowan graduated from needing physical therapy support, because she had learned to walk, run, dance, and play without any supportive devices.

That is the goal of the AEA: to help children through any challenge—big or small—and to get our children to a place where they no longer require services. We are a living example. They gave us hope again.

THE TRUTH ABOUT ACCESS TO SERVICES: HOW THE AEA CLOSES THE GAP

As a medical professional, I know the importance of early childhood intervention and am aware of the data that shows children who receive early intervention do significantly better than those who do not. The AEA is the service provider team that ensures children are not left behind, closing gaps while families wait to get government support through Medicaid programs, or wait to get into private specialists to start timely care.

Governor Kim Reynolds and many state legislators continue to assert that even if Iowa’s AEA structure changes, children will still be able to rely on Medicaid services, including our waiver programs. That is simply not true. 

The Medicaid system is extremely difficult, and for some families, impossible to navigate. The Medicaid waiver program is essential to ensure medical coverage and support services for children with disabilities. Yet the wait list to get a waiver—if you can meet the requirements—is currently two to three years. The state limits the number of waivers, so some children will never move off the wait list. Children cannot wait this long, especially when timely early intervention is so critical.

Many years ago, we were fortunate enough to get Rowan on an Intellectual Disability waiver after struggling to navigate the system for about one year. Even with those services, Rowan could not get timely support needed. We had to do a two-year trial of different assistive communication devices with tons of restrictions and requirements before we could get approved for a communication device of her own.

Being non-verbal, Rowan needed that device to communicate in school, and she still relies on it today. The device cost $6,000, so most families would not be able to afford the expense on their own. Once we obtained approval for her device, it took almost another year to get the device in hand. 

This is yet another care gap that the AEA closed for our daughter. The AEA loaned her a communication device that she was able to use until she could get her own through Medicaid services. The AEA also taught her teachers how to use this device and how to test her differently when standardized testing did not work.

AEAs WERE CREATED TO REDUCE COSTS, PROVIDE ADEQUATE SERVICES ACROSS IOWA

The Iowa legislature created the AEA system during the 1970s because of the access gaps across our rural communities. The core mission of the AEAs was to ensure equity and equality of services for our children of disabilities, and to provide media services and educational support for our schools at a lower cost when schools could not afford them. 

The AEA provides mental health care, social work, parent advocacy, occupational, speech language pathology, physical therapy, audiology for hearing testing, crisis intervention service—the list goes on. The AEA was the first to organize and show up to support our communities after the horrific Perry school shooting as part of the Crisis Intervention Services they provide. 

Our high school four-year graduation rates are approximately 85 percent for our children of special needs with AEA support, having improved from about 60 percent in 2016. That is well above the graduation rate for our general student population in Iowa. It proves that what they are doing is working.

The needs of our children are so diverse. Schools cannot anticipate which needs will be identified through a given school year. That applies not only to children with disabilities, but also to children in the general student population, who may face an academic or mental health challenge. Our current AEA system is integrated and allows all nine AEAs to work together across school districts to immediately deploy a trained professional to start assessments within 30 days of identifying that need and start services working directly with the educators within the child’s school setting. 

Federal law requires schools to offer a “free appropriate public education.” Schools will be out of compliance if a student is unable to receive a service based on an identified need within 60 days. The AEA ensures that delays in start of service provisions are not a problem here in Iowa, and protects our school districts from expensive lawsuits they would not be able to afford.

The shared model for delivery of media, education, and professional development services saves our schools millions of dollars due to economy of scale purchasing. The AEA can bulk purchase at reduced cost and then share to all schools across Iowa. One example is that the AEA has research-based science kits, which schools can check out at no cost. The AEA delivers and picks up the kits, purchases the materials, and restocks these kits so our schools do not have to do that themselves. Then another school can rent them out, so all kids benefit. If we couldn’t share, many schools would not be able to purchase these kits for their students. 

WHAT IOWANS NEED TO UNDERSTAND ABOUT THE AEA REFORM BILL

While delivering her annual Condition of the State address in early January, Governor Reynolds asserted that “Iowa students with disabilities are performing below the national average.” The next day, her office introduced a 120+ page bill that would do great damage to AEAs, children, and school districts. The AEA system would be dismantled with funding for special education under government control. It later emerged that a report by an out-of-state consultant with no experience in this field informed the governor’s proposal.

The real question is why? What is the rush unless there is an underlying hidden political agenda? Why were even our legislators unaware of this bill coming forward? Why were none of our educators, parents or community experts involved in developing the governor’s plan? 

The community rose up with a fire the legislators have never seen, with thousands and thousands of people across the state fighting back. 

Although the Iowa House and Senate have advanced their own versions of AEA legislation, which are somewhat different from the governor’s original proposal, there are still good reasons to oppose these bills.

1. The bill was written to dismantle the integrated AEA system, restricting school districts to move to a fee-for-service model that costs more and prevents districts from sharing therapists and providers when a student has an unanticipated need.

For example, if a child is found to need services for dyslexia, blindness, or impaired hearing, but the school didn’t contract to have one of those professionals on staff during the annual budget planning period, the AEA would be limited on help they could provide—if they even had staff available to offer that service. 

Some districts will be forced to choose an expensive private or non-Iowa agency if the AEA can no longer meet the need. Many of these non-Iowa agencies can only provide telehealth services, which further reduces equity, equality and quality of services across the state. This fee-for-service model failed before and will fail again.

2. This bill moves all funding power back to the government, even though Reynolds claimed she was moving decision making back to the local school districts. The director of the Iowa Department of Education, who is not even a trained educator, would have the power to approve all district budgets. The director would have the power to deny any funding, service or provider requests, including firing therapists and provider positions she believes schools do not need (and without any formalized criteria to make those decisions). That is not local control, but a power grab.

3. Our AEA expert administration teams would no longer make decisions with the schools, but would be allowed to serve only in an advisory capacity, with decisions finalized by the director of the Department of Education.

4. The governor claimed Iowans would save millions of dollars in property taxes if AEAs were blocked from providing media and education services. However, if you do the math, that works out to a reduce property tax for families of only two to 48 cents. Our schools and children rely on these services to improve academic performance across the state. The version of the bill the Iowa House Education Committee advanced would maintain AEA funding for those services.

5. No matter what version of the bill reaches the Iowa House or Senate floor, the bills contain no provisions to support the goal of improving academic performance for students with disabilities. On the contrary: they will likely worsen performance and leave vulnerable children behind.

In summary, our communities must start recognizing that the governor’s rhetoric does not reflect what is actually written in these bills. To be clear, our parents and communities are not looking for improvements or additional revisions to this AEA reform bill. We are asking our legislators to stop this bill and slow down, so we can take the responsible time needed to conduct a credible, thorough study to guide what reform is truly needed.

We are fighting for our children. I’m sure every parent has experienced the intense desire to fight back if anyone has ever hurt or threatened your child’s well-being. That is what our parents are feeling right now with this AEA reform bill.

Any hurt caused by this legislative session is something this community of parents will never forget nor forgive. If this bill is not stopped, our children will suffer for years to come. We know some reform is needed in Iowa, and we are open to doing that the right way.  We need our communities to stand up together to protect our children. 

We also need every person who is eligible to get out and vote this election year for those who support our values and the legacy we want for Iowa.