Early Intervention (EI) is a state funded program that offers assistance to children age 3 and under who have developmental delays and disabilities in the state of Illinois. All states have some sort of assistance, but the terms may vary state to state. In Luca’s case, EI covered all of his therapies and special equipment after our insurance was maxed out for a monthly income based fee. Since Luca was diagnosed at only a few weeks old with a genetic disorder, he was instantly qualified and was able to begin services immediately. He started Physical Therapy (PT) in December 2014 when he was just 3 months old. Luca had low muscle tone and torticollis, so it was important that he start working on this very early! He had PT twice a week and by the time he was 6 months old, we also added Occupational Therapy (OT) once a week and Speech/Feeding twice a week. Luca had 5 therapy sessions weekly for an hour each in total all the way up until he turned one.
Speech requested that we do a hearing test for Luca since he wasn’t making the sounds he should, just as a precaution. We never had any indication that Luca would have any sort of hearing impairment since he seemed hear and respond in his own way. In January 2016, shortly after Luca turned one, we did an Auditory Brainstem Response (ABR) test. Luca was sedated and they measured his brain’s response to sounds to test his hearing. Low and behold, the testing came back showing that Luca did indeed have hearing loss. His left ear has a very mild hearing loss, but his right ear is more moderate and a hearing aid is recommended. We went to Hawaii in March 2016 and picked up his hearing aids when we got home. With the hearing aids brought another bi-weekly therapy session – Developmental Therapy for Hearing Loss (DTH). This brought us up to seven hours of weekly in-home therapies for services. Luca’s team met every six months to review his process and adjust goals.
We were very lucky to have mostly great therapists! We moved when Luca was two, so we had to get a new team of therapists, which wasn’t so fun. We had a great PT, OT and Speech/Feeding was just okay (in my opinion). Our DTH therapist stayed with us since her territory was much larger! Before we moved, Luca’s PT ordered him a gait trainer (which is thousands of dollars) and set up a fitting for orthotics since Luca’s ankles were severely weak and his ligaments aren’t tight, which causes him to roll his ankle and walk on the very inside of his foot. So before Luca turned two, we were up to hearing aids, a gait trainer and orthotics – all necessary for Luca to continue to thrive.
Once we moved, the PT assigned to us was awful. It was obvious from the start since wasn’t familiar with Luca’s equipment, which was really not so good since we didn’t really have much time to learn to use it with our awesome PT prior to moving. I called our case coordinator (who was AMAZING) and she completely took my side and started looking for a new one for us. She did the dirty work of firing the lady who wasn’t a fit and we ended up with someone who was much better qualified and whose skills immediately stood out once she started. Phewww! Unfortunately, our new OT wasn’t familiar with sensory issues, so we had to bring a second one onto Luca’s team. This lady was great when she showed up, which was few and far between. Even though we paid the same monthly fee, it didn’t guarantee our services. Sigh….you just never know what you’re going to get! Our Speech/Feeding therapist was awesome and we still had Cathy, our DTH. So all in all, we had a halfway decent team! It was definitely very exciting once Luca aged out at the age of 3 and started Preschool. EI was officially over and we were able to find better matches for Luca.
I wish there was a way to ensure the therapists that are approved by the state to practice through EI had to be better qualified. Some families don’t know what to expect and aren’t seasoned enough to know if someone is really good (including myself when Luca first started!) Most of ours were good, but there were those that cancelled frequently, who seemed to not have a clue what they were doing and then those who didn’t really seem to care about Luca’s development as much as they just cared about getting the job done to collect a paycheck. Thankfully, there weren’t many of those and most of our team was amazing, supportive and really seemed to enjoy watching Luca grow.
All in all, it’s just really important to go with your gut. If someone doesn’t seem to be a good fit, you are not stuck. Find someone who is better for your family and who will better serve your child’s needs. There are some really great therapists out there and who will help your child to progress. The earlier you start with therapy, the better!