For some families, Iowa’s AEA help begins at birth

Jamie and Michael Bell didn’t know what kind of future to expect for their son, Miles, when he was diagnosed in utero with spina bifida, a condition that often causes mobility challenges.

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Now, at almost 2 years old, Miles is exceeding their expectations and walking, sometimes with the help of mobility equipment. A physical therapist from Grant Wood Area Education Agency comes to the family’s home in Atkins twice a month to work with him.

“I don’t think I would have been empowered to see him do as well without the AEA,” Jamie said. “We would have said, ‘He’s not able to … this is what his life is going to look like.’ They’ve changed our outlook on how important it is to give him opportunities, even if it looks different.”

Because of Miles’ diagnosis, Grant Wood AEA staff began meeting with the Bell family shortly after his stay in the neonatal intensive care unit at the hospital under a program called Early Access.

Early Access is free to children from birth to 3 years with special needs, and is Iowa’s system for providing early intervention services administered through the state’s nine area education agencies. The AEAs oversee education of Iowa students with disabilities and offer media instructional materials and consulting services to schools and students in their geographical boundaries.

A new state law — House File 2612 — changes the way the AEAs operate but does not directly affect the Early Access program. The compromise measure was not as sweeping as Gov. Kim Reynolds proposed, but she said it would improve transparency over the cost of AEA services.

What the law does change, once fully implemented in its second year in the 2025-26 academic year, is that 10 percent of state funding for special education services will remain with school districts for them to use for that purpose, while 90 percent will continue to flow directly to the AEAs.

In that second year of implementation, all state funding for other education services and media services will go directly to school districts — which could use that money with AEAs or get services from some another entity.

Previously, federal and state special education funding went directly to the agencies. AEAs also receive property tax funding for media services and other education services for schools in their region.

While the new law doesn’t directly impact Early Access, those service providers rely on material purchased through the agencies’ media departments. Assisted technology like mobility aids, screen reading software and speech recognition software is used by occupational therapists, physical therapists, speech therapists and others serving students in schools and through Early Access.

‘Giving children access to their world’

Sarah Waskow, an Early Access physical therapist with Grant Wood AEA said she views her job as “giving children access to their world.” Sometimes that looks like a special chair, so a child can sit and play with their friends; or a stander, so they can be upright and at eye level with their peers.

Grant Wood AEA, based in Cedar Rapids, serves a seven-county region including Linn and Johnson counties.

Waskow uses materials — purchased through the media services departments — “almost everyday” with families, often leaving it at their homes for them to borrow for a short amount of time.

Other times, the media materials are used by families to determine if they are a good fit for their needs and something the families need to purchase to aid in their child’s development.

“Families have very specific goals. It could be wanting to take all their children to church. We’re going to work on that. I ask them up front, ‘What do you wish your child could do with your family?’” Waskow said. “We come to you and work on real life.”

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Becky Clark, an Early Access speech therapist with Grant Wood AEA, said she hasn’t noticed changes yet to Early Access services.

“Nobody knows what that looks like next year and the years beyond that” when the law is fully in effect, she said.

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With less funding for AEAs media services department, it could be harder to replace and update the equipment families who receive Early Access services rely on, Clark said.

Clark said she sees “big changes” for families when she’s able to teach them how they can best support their child and their different needs. During one of her visits with a family, for example, she went with them to the grocery store to work with the child on interventions that can make the trip a positive experience instead of something that was “dreaded,” she said.

Michael and Jamie Bell said they haven’t felt any changes to Early Access services since the new AEA law began to take effect this year.

Their older two children — Brooklyn, 5, and Bo, 3 — are “huge motivators” to their Miles’ development, Jamie said. “We’ve got our own little physical therapists in training,” she said.

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Ashley DeLayo, who lives in Marion, has obtained services through Early Access with her own children and children she had fostered over the years.

“Early Access gave me peace of mind that we were doing all the things we should be doing to help his growth and development,” DeLayo said of her son, Levi, who is now 7 and a second-grader in the Linn-Mar Community School District.

DeLayo said she “couldn’t keep count” of the amount of equipment she borrowed from Grant Wood AEA over the years through the Early Access program.

How can families get Early Access services?

Jessica Burger, early education administrator with Grant Wood AEA, wants families to know that free Early Access services remain available to them “as soon as they have a question or a concern.”

A referral to Early Access can be made by a parent, guardian, health care provider or educator if they have concerns about a health or physical condition that could affect the child’s development or have developmental delays in the ability to play, think, talk or move.

“They do not have to know for sure their child has a diagnosis or delay,” Burger said. “Just simply suspecting there might be one is enough to make a referral to Early Access services. They get a free evaluation, and have the option to accept services and work together.

“No one wants to hear their child is experiencing delays, but we are there to support the parent and caregiver as much as the child,” Burger said. “A lot of our work is focused on giving families the tools and resources they need to help their child develop.”

Once a referral is made to Early Access, families have the choice to set up an evaluation within 45 days.

During the 2022-23 school year — the last available data — Grant Wood AEA served 471 children through Early Access services.

Burger said Grant Wood AEA is working to ensure changes made to the AEAs under the new law does not impact the Early Access program. The uncertainty created by the new law led to about 100 of Grant Wood AEA’s 520 employees voluntarily leaving. But in the Early Access program, five of the seven positions that opened were filled, Burger said.

A glance at Early Access across Iowa

Melanie Van Dyke, a supervisor for birth to 5-year-old services at Green Hills AEA, which serves 17 counties in Southwest and South Central Iowa, said the agency still is providing the same Early Access services to families as before the new law was signed.

Sue Moran, director of early childhood service at Northwest AEA, which serves 10 counties in Northwest Iowa, said the agency is “watching and waiting” to see the continued impact of the law.

There have been no staffing changes to Northwest AEA’s Early Access department, Moran said.

Nathan Wood, chief administrator for Great Prairie AEA, which serves Southeast Iowa, said the biggest challenge is the decrease in the overall number of service providers — including those in Early Access. The AEA has two provider vacancies, at least for now.

“As a result, our caseload for our Early Access staff has increased and staff are traveling further to the homes of the children and families they serve,” Wood said in an email to The Gazette. “It does cause me to have concerns on whether we can expect staff to maintain these caseloads long term. My hope is that legislators will respect the changes that have been made to our system and provide us time to implement changes and bring stability to the new model as we serve families and students.”

Comments: (319) 398-8411; grace.king@thegazette.com