Parents rally for Early Intervention funding

Carolyn Burkhead was only a few moments into her speech at the Early Intervention rally Thursday when she had to stop, because her daughter was having a seizure.

Mira Burkhead, age 4, has epilepsy, developmental delay and other medical issues. She cannot talk or walk, and so far there is no medical explanation for her problems, Burkhead said. At any moment, she may begin seizing. And she did, partway into Burkhead’s speech in Woodland Park in Collinsville on Thursday, temporarily halting Burkhead’s speech in favor of the program.

“We were in denial for a really long time,” she said. But a social worker put them in touch with EI, she said, and they helped her guide through the new world of specialists, of physical therapists and dietitians and medications and many other things she found overwhelming as a new mother. She said she believed EI was more important than doctors. “They were teaching us how to understand Mira and work on her level,” she said. “They were teachers.”

The Illinois Early Intervention program connects families whose infants and toddlers have diagnosed disabilities and developmental delays with resources and therapists who can help keep their children on track, often within the child’s home or day care center. The program provides services to about 20,000 children aged birth to three years old, or about 3.5 percent of the children in that age group.

Under the proposed budget, EI would lose $23 million. The Rauner administration also proposed to change the definition of developmental delay from 30 percent to 50 percent, which would eliminate 6,000 children from the program. The proposal was opposed by child development advocates, including Easter Seals. If accepted, Illinois would be one of only four states that limit eligibility to children with a 50 percent delay.

“The very last people who should have to suffer, sacrifice or be cut from the services they need are our children,” said Ali Cummins, organizer of the rally. “They have so much potential and beauty and goodness to bring to the world, and without these services they will fall behind, and so much of that goodness they were going to bring to our world is going to be lost too."

Easter Seals estimated that cutting services in the first three years of life will lead to many more children who would need more intensive and costly services when they enter the public school system - to the level of $1 of Early Intervention vs. $7 of special education services. Children with mild to moderate delays - 30 to 40 percent - are best served with early intervention, and nearly half catch up to the point where they do not need special education services at kindergarten, according to Easter Seals - which makes EI 2.5 times less expensive than special education, they said.

At the rally, parents spoke emotionally of the medical issues their children faced, sometimes due to birth defects or premature birth, or sometimes with no discernible cause. Each praised the Early Intervention program, which brought therapists and advisers into their homes and day care centers.

Wendi Munguia said her son seemed fine when he was born, but as he got older, Alex exhibited behavior that they eventually came to recognize as Asperger’s Syndrome. He could not sleep and would scratch himself until he was bloody. People would say hello to them in the grocery store, she said, and he would begin pounding his head on the grocery cart.

“It was very difficult, I had very little sleep,” Munguia said. But they used EI, and she said that reduced the services he needed in school. Now he is 17 years old, getting ready to graduate, and will be going to college, she said.

Cummins said there are parents who have been told their services will end on Aug. 1. “Our kids should never have to suffer due to political actions or inactions,” she said. “We are here to demand a fair budget that includes early intervention services, because our babies can’t wait."

This story was originally published July 23, 2015 at 10:55 PM with the headline "Parents rally for Early Intervention funding."