Krista Riber knows firsthand how critical early intervention services are for young children in Illinois with special needs.
Riber’s 18-month-old son Ezra was born with a rare genetic disorder called Majeed syndrome, as well as a condition called cortical visual impairment, where the brain has problems interpreting messages from the eyes.
“We first learned that Ezra would require early intervention services while he was still in the NICU (neonatal intensive care unit),” Riber said. “One of the staff members in the hospital, had done an evaluation on him and noticed some abnormalities with his hands and his thumbs, and had added him to the list for an early intervention evaluation.”
Riber said Ezra was unable to hold his head up as recently as six months ago. But with the help of his therapists, he’s made remarkable improvements.
“Now we're working on standing every week, and he is standing on his own for like 10 to 20 seconds at a time, which is something that a year ago I would have thought was an impossible concept,” Riber said Friday morning during a news conference at Café Santa Rosa in Peoria Heights.
“His vision has improved exponentially to the point where people when they first meet him – he's probably said ‘hi’ to almost all of you as you walked in here today – you don't notice his visual impairment, and that's because it has improved with therapy.”
Riber joined representatives from Raising Illinois, the EI Grassroots Alliance and the Early Childhood Forum of Central Illinois in making a plea for increased funding for Early Intervention, a program that provides family-centered developmental, social and emotional services to infants and toddlers with developmental disabilities or delays.
“Whatever the need of that child is, then those are the providers that come in and give them their services,” said Erin Stout, president of the Early Childhood Forum of Central Illinois. “The problem is early intervention has been significantly underfunded for years. And with the governor's new budget coming out, the proposal still leaves early intervention significantly underfunded.”
While Gov. JB Pritzker's budget proposal includes a $6 million funding increase for the state's EI program, the advocacy groups say $40 million in additional funds are needed to address a long wait list that’s exacerbated by a shortage of providers.
“When we speak of potential, there is no other program that ensures children are able to reach their potential like early intervention program designated specifically for our children with developmental delays – a program that should, without even a shadow of a doubt, be fully funded,” said Jesse Rojo of Raising Illinois.
Rijo said they frequently reach out to state legislators seeking support for their request.
“Time and time again, we're being told that, you know, ‘something will happen eventually; something will happen eventually,’” Rojo said. “Guess what, that stops. That's just not good enough. Babies cannot wait, period. Our community cannot wait. We know early intervention can make the difference.”
Speech pathologist Sarah Ziemba of the EI Grassroots Alliance has 25 years of experience as an early intervention provider in the Peoria area. She says the Tri-County region has the longest wait list in the state.
“In the last year, legislation was passed guaranteeing that families would start their therapy services within 30 days of their IFSP (Individualized Family Service Plan) plans being developed. But here we're seeing kids waiting months for those therapies,” said Ziemba, adding that it’s not uncommon to see kids waiting for a year or more.
“We're seeing kids that are turning 3 and moving on to the school systems without having ever had any of their early intervention services, and ending up in classrooms needing more help than they would have had they gotten those services from the beginning.”
Ziemba pointed to stagnant wages in the program have resulted in the staffing deficiency.
“Last year, providers did receive a 10% increase, which was very welcome. But it wasn't enough to attract new providers to the field, and providers continue to leave,” she said, noting many therapists can make up to 30% more working in other settings such as hospitals, schools or nursing homes.
“Even though this is a really rewarding field and stories like Krista’s, and everybody here – all the providers that I see and the families – this is why we're here. We love it, and we have a passion for it and this program works. But many therapists simply can't afford to take the pay cuts that are required to work in early intervention right now.”
Riber said she’s grateful Illinois has an early intervention program and how it’s been able to benefit Ezra.
“He's just a really wonderful kid, and he has made so much progress with early intervention system,” Riber said. “There's so many other kids like Ezra that deserve to be given their very, very best shot at life, even though they might have some extra disadvantages from the get-go.
“As a mom, I would love to hear Ezra say ‘mama’ one day, or walk or run with other kids. He might, and he might not. All I know is that with an early intervention system, we're all giving him the very, very best shot to do all those things.”
