Dear Gov. Rauner — We Need Early Intervention

Dear Governer Rauner, 

I’m writing to you as a person who rarely gets politically involved. Regretfully, I didn’t vote in Illinois’ last election cycle. I thought politics didn’t really affect me personally. I was wrong.

Yesterday I got the news that our Early Intervention coordinators were closing their doors for good. Unbeknownst to me, the agency has not been paid since June. They no longer have money for payroll or to keep the office open. And as a result, we are losing services for our two-year-old son. I had heard peripherally that the Early Intervention program was “in trouble,” but naively I assumed it would all get worked out somehow. Unfortunately — it hasn’t. The Illinois’ legislature’s failure to reach an agreement about the budget has started to negatively impact my family. And I need to speak candidly with you about this, in the hopes that you can help us.

Our family, who benefits from EI services every single day. Ignore what my husband is doing.

Our family, who benefits from EI services every single day. Ignore what my husband is doing.

When I was pregnant with my son, Henry, we learned that he would be born with a severe birth defect called spina bifida. What this means is that Henry’s spine refused to form properly in utero, and as a result, he lives with a host of medical conditions that affect his day-to-day life. Kids with spina bifida can have significant delays and permanent paralysis.

Henry is fortunate in that he has some mobility (he uses a walker to get around) and has above-average intelligence. He’s a smart little dude. But even with Henry being relatively high functioning, EI has been a lifesaver for us. I can only imagine how much more necessary it would be for other families.

Two years ago, when I brought Henry home from the NICU, a terrified new parent, it was our Early Intervention coordinator that stepped in to save the day. Lisa, our coordinator, came to our house and sat with me at the kitchen table, patiently explaining to me how we could help him catch up to other kids with Early Intervention. She explained to me that we could get speech, developmental therapy, occupational therapy, and physical therapy for Henry, at minimal cost to us. Lisa helped me navigate a really daunting and complex system — our health insurance — with ease. Lisa got Henry his first walker. While I was busy taking Henry to his doctor appointments and adjusting to life with a special-needs newborn, Lisa was able to coordinate physical and developmental therapies for Henry through EI.

Believe me when I say that I could have done zero percent of this without Lisa’s help. Hell, I had to google for fifteen minutes before I even found the link on your website to send you this e-mail. Lisa, and Early Intervention, by extension, has made it possible for me to raise a child with special needs. Early Intervention made it possible, yesterday, for Henry to wheel up to another kid in the library with confidence and ask him if he wanted to play. They are directly responsible for so many of his successes.

I realize that you want to limit the availability of EI and not cut it altogether. You want to preserve EI for the “most vulnerable” children by reserving it for children who have a fifty percent or greater delay. Even with these restrictions, Henry could probably still qualify for EI by virtue of his diagnosis. But please believe me when I say that cutting eligibility at all, for any child, is an enormous mistake. For so many families, a diagnosis is evasive. And to have a fifty percent delay, in most areas, is major: Only now, for instance, at two years old, does Henry have a gross motor delay of fifty percent. He is able to crawl by himself and stand with assistance (something a typical kid would have been able to do a year ago). Had he waited to get services until he reached a fifty percent delay, it would have done nothing — he ages out of the program in February. The research shows that it’s so much more effective to combat delays as early as possible, before it gets significant.

In your campaign, you stated that you wanted to make abortion a rarity. Please realize that by cutting Early Intervention, or by failing to re-instate it, you will make abortion more prevalent, not less. Because I blog and write about our son’s disability, I often get e-mails from other moms with daunting diagnoses, terrified and considering abortion. But because of programs like Early Intervention, I’m able to reassure them that their special needs child will get the medical assistance and the support he needs once he is born. I don’t have that reassurance any longer. By slashing EI, you are making it harder for mothers in Illinois to carry their children to term, knowing that there is no safety net to fall into once their children are born. You are making it easy for abortion supporters to say, “See? Republicans only care about babies before they’re born.” And you’re making it hard for me to disagree with them.

I am naturally a very cynical person. I am apolitical. In the past, I haven’t had much faith at all in the political system, and I’m asking you, as your constituent, to help me restore that faith. Please re-instate EI and approve the budget for it in full. Please find a way to “bring back Illinois” that doesn’t directly impact families of special-needs kids who are already struggling. Reinstate EI, and help special needs families find a reason to vote for you again.