Jacklyn Vasquez’s daughter Ava enjoys time on a swing. Vasquez has had three of her four children go through Early Intervention services. The Elburn resident is one of the EI advocates seeking to get more money for Early Intervention in the next state budget. (Provided photos)

Second in a series looking at the continued push for more state funding for Early Intervention services

Jaclyn Vasquez had barely pulled away from the hospital, where her daughter Ava had spent the first 19 months of her life, when she made a phone call.

It wasn’t to family or friends. It was to Early Intervention services.

“I know how long the wait list is,” said Vasquez, who had worked in early childhood special education for the Chicago Public Schools.

As it was during the COVID-19 pandemic, Vasquez, now an Elburn resident, said she was fine with Zoom therapy sessions and that seemed to get her daughter, who suffered chronic lung failure, into EI services sooner than if she had opted for just in-person sessions.

“I told them, ‘You just need to keep me on target, on track. Tell me what to do and we’ll work through it all week,’” Vasquez remembered.

With three of her four children receiving EI services and her experience as an early childhood teacher, Vazquez was blunt when calling about therapies for her youngest daughter.

“I said, ‘Look, I know the system. I definitely want to make sure we are on the list for service,’” Vazquez said, adding, “’We have a right to this. I am going to be a very loud advocate for my child.”

The Vasquez family on a Make-A-Wish trip to Disney World

Even with her knowledge of the Early Intervention system and her straightforwardness with EI personnel, Vasquez still had to wait for Ava to get assessed.

Having to wait for assessments and services is part of the reason Early Intervention advocates are seeking $60 million in additional EI funding in the next state budget. Proponents say the additional funding will whittle down the wait list for services and keep professionals working in EI position

An Illinois Department of Human Services cost model showed that the Early Intervention workforce is severely under-compensated and that the true cost of delivering all EI services is $368 million, which is $168 million more than current state spending.

There are 3,000 children on the state waiting list, not receiving the Early Intervention services they are entitled to by law.

Even with Vazquez’s experience in the system, she still needed help from EI advocates to get all the services her tracheotomy- and ventilator-dependent daughter needed.

“I was in this space, but when it’s your child and you’re trying to navigate all these systems, it’s so lovely to have people who are helping you stay on target, helping your child progress,” she said.

“We would learn from the therapists both in the hospital and at home. I would do therapy every single day with my daughter in the hospital and then at home,” she added.

Vazquez said she fought to get her daughter therapies as soon as possible in the hospital.

Medical professionals told Vazquez and her husband to prepare for Ava to start kindergarten in a wheelchair as she could only roll over her left shoulder at 19 months.

“We did all the therapies all day every day with her siblings here,” Vasquez said. “She is 4 ½ now and she is walking, talking and starting to say words because she has a trach.”

Vasquez quit her full-time job and “we put all of our time, love and support” into her daughter’s progress.

Jacklyn Vasquez’s children (from left) Olivia, Ava, Easton and Jackson

“It’s not to say Early Intervention will get your child to walk but the earlier the intervention the better the outcome,” she said. “I knew that as a parent advocating when she was in the hospital with an unknown discharge date in mind.”

Vasquez said it is frustrating that youth with developmental delays are not getting the services guaranteed to them by law.

“It’s a civil right,” she said. “Access to early intervention is their right, to access services to help them reach their best optimal potential.

“If we’re not investing in our young children, we’re missing on growing our society, growing as a community and as a population. Our most vulnerable population needs to be serviced in those first three years of life. This is that critical window of brain development.

“Any intervention that we’re doing as young as possible and servicing them will have an effect on their life outcome. I don’t think a lot of people think about perinatal trauma, what happens when they’re born early, but if we get those supports early, that makes all the difference in life expectancy and different outcomes and how they fare in schooling. It also reduces the amount of funding we have to put into services later in their life”

Vazquez said it is as important to support the EI families as it is the children.

“A child doesn’t stand alone if they have a supporting, nurturing family,” Vasquez said. “If our families aren’t well, then our children aren’t well. So what are the supports our families need in raising children?”

She said Early Intervention families don’t live the typical family lifestyle.

“Quite often, families like mine are unseen across communities because we’re in trauma and we’re trying to survive and it’s hard to leave the house,” Vazquez said. “You’re trying to figure out nursing and you’re trying to figure out insurance companies. I’m sitting on the phone for hours in a day. How our lives change when we’re trying to support our children.

“A lot of times everybody else has a different life and it’s hard to integrate. Quite often, the majority of the population doesn’t understand or know it, but I think that’s where we’re missing, if we don’t raise awareness. People don’t understand this. They can’t really advocate for it and can’t understand the importance of all of us being well together.”

kbeese@chronicleillinois.com