Critical Services at Risk

The Budget Impasse Takes Its Toll

By Naomi Shapiro
Guest Blogger

Family

On January 17, my husband and I welcomed a baby boy into our lives. Within minutes of his delivery, he was whisked to the Neonatal Intensive Care Unit (NICU) for what we were assured was routine treatment to assist his labored breathing. Shortly thereafter, we learned that it was a cleft palate that was causing his breathing troubles and prevented him from breastfeeding or taking a bottle. Not to worry, we were told, “he’ll be home in a week.” Within a few days, though, it became apparent that our stay in the NICU would be longer than anticipated.

During the course of the first two weeks in the NICU, our room was a flurry of activity – doctors, residents, fellows, audiologists, nurses, social workers, physical therapists, and occupational therapists were all in and out. At one point, we were visited by a geneticist.  The list of possible ailments he presented seemed unlikely and inconsequential in comparison to some of the more acute and immediate medical issues our son was facing. After he left, we forgot that he had ever been there.

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A couple weeks later as we made our morning commute to the Ann and Robert H. Lurie Children’s Hospital of Chicago, the NICU resident called to say that a genetic counselor was looking for us.  Although concerned, we did not expect the news that she shared with us: our son’s genetic tests indicated that his cleft palate (and hearing loss that was discovered after we arrived in the NICU) were results of a genetic disorder.  We learned that his particular disorder can cause a vast array of disabilities – some that we could test for immediately and others that would not yet be apparent, including developmental delays.  

In the course of explaining what we could expect, she explained that once home from the hospital, we could enroll our son in Early Intervention, a  program of the Illinois Department of Human Services that offers coordinated therapies at home or daycare. Importantly, many of the treatments that we could receive through Early Intervention would not be covered by our health insurance.  During the following weeks, we came to terms with this unexpected news and grappled with how our lives might look different moving forward.  

After seven long weeks in the NICU, we brought our baby boy home to meet his brother.  After we settled in, I called our local Early Intervention office.  A coordinator came to our house to meet with us and learn about our son and his needs.  She scheduled an evaluation involving occupational, physical, speech, hearing, and developmental therapists.  After an hour with all our new friends, it was determined that he would begin physical therapy, occupational therapy, and hearing therapy and be reevaluated for speech and developmental therapies at a later date.

It is impossible to understate the impact that these therapists have had on our son. We have seen him make tremendous strides under their care; tasks that many children do instinctively such as responding to their name, sitting upright, or reaching for an object have been the result of intensive therapy for our son.  Not only do they provide outstanding therapy, they come to our home or daycare. This sounded like a luxury to us at first, but once we settled into a routine that included hours of therapy each week, we realized how essential this was in order for us to maintain a level of normalcy at work and at home. 

For children like our son, starting needed therapies early is critical in helping them reach their potential.  Studies have shown the tremendous effects of Early Intervention: providing critical therapy at a young age lowers the likelihood of children needing ongoing therapy, special education, and it even lowers incarceration rates.  

On July 1, the State of Illinois started a new fiscal year without a budget. As a result, there was no available funding for Early Intervention.  The Early Intervention therapists, who are contractors rather than state employees, stopped receiving payments for the work they were doing. Most stopped taking new Early Intervention clients leaving a waiting list for greatly-needed services, but many of these amazing professionals continued their work without pay.  Our therapists graciously continued to offer our son therapy, but grappled with how much longer they could afford to do so. They see their work as a calling; they love what they do and they love making a difference in the lives of children.

But after some time, some therapists understandably could no longer continue to go without pay and tearfully notified families that services would end without a resolution to the budget impasse.  For many families, this meant that they would have no access to these crucial services.

Thankfully, a short term resolution was reached earlier this month when the Illinois Comptroller announced that she would begin paying providers. Unfortunately, it did not come soon enough for many providers who were forced to exhaust lines of credit or, in the most severe situations, end their participation in the program. Although funding has been restored, the work of many Early Intervention therapists and families has been disrupted, for some permanently. It is unclear which therapists will be able to return to their work, leaving services that families rely on up in the air. Early Intervention is yet another victim of Illinois’ current budget crisis, burdening the most vulnerable in our communities.

 

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