A Step Backwards for Early Intervention in California

This is where we started. On December 27, 2007, our twins were born, 6 weeks premature, in distress. Makayla, who was almost twice Mackenzie's size, was much sicker initially, but recovered quickly and only spent 12 days in the NICU. Mackenzie, however, was our tiny fighter. And fight she did. And has. She was only 2 lbs, 15 oz...off-the-charts-small for a 34-weeker. She never did need any breathing assistance, though. She never did have any infections in the month she spent in the NICU. She never got jaundiced. She surprised us with a cleft lip and cleft palate - yet, despite the odds, she showed a clear preference for breastfeeding versus taking a bottle. She had pulled her feeding tube out - twice - within the first hour of her life. She did have a mild brain bleed, and some mild apnea which required her to come home on an apnea monitor - but she came home after 28 days and at just 4 lbs, 4 oz, because she was otherwise doing so well. She's a fighter...did I mention that?

We applied for Early Intervention services (developmental services for ages 0-3) for her right away, knowing that due to her low birth weight and prematurity, she was at risk for developmental delays. We were denied services. I chose not to appeal at that time. However, several months later, I began to notice that Mackenzie wasn't responding to noises the same way Makayla was, and started to get concerned that she wasn't hearing. Around that time, she had her first appointment with the cleft palate team, and as a routine preparation for her lip repair, they scheduled her to see the Ear, Nose and Throat surgeon. At that appointment, they tested her hearing - she failed the test, but also was not very cooperative, and they wanted to repeat the test while she was under anesthesia for her surgery.

But I wasn't waiting - I again contacted Early Intervention (which is run by Inland Regional Center in our area) and requested an evaluation for services, based on the fact that I KNEW at this point she was not hearing. They agreed and came out to the house to assess her. Sure enough, she did not respond to any of their noise-makers except the loudest one - a very loud horn. They also found developmental delays in other areas as well, including gross motor. They agreed to start services right away, and an infant stimulation teacher, Susan, began coming to our home weekly to provide developmental services to Mackenzie. (Susan, by the way, has been a GODSEND!!!)

When Mackenzie had her surgery, they found fluid behind both eardrums, and ended up having to place tubes in her ears. Once that was accomplished, they re-checked her hearing, and she tested near-normal. Hooray!! But she was already behind...so the services were still much needed and continued. In the meantime, we also started learning and using sign language around the house, using Signing Time videos, so that Mackenzie would have a way to communicate with us and us with her. Susan also works with her on signing.

As the months have gone by, Mackenzie's needs have evolved and changed. Her strengths and weaknesses have changed too, somewhat, and while she can now hear, she continues to lag behind severely in her communication skills. Her gross motor skills aren't nearly as far behind, but she definitely has some delays there too.

So recently, she had her annual eval with her coordinator from Inland Regional Center...and this is where things get ugly for the state of California. Mackenzie's language skills are very poor - according to the IRC's assessment, her expressive skills are that of a 6-8 month old child, and her receptive skills are that of a 15-month old child. She is 20 months old. So we discussed the idea of some sort of speech therapy for her. The contracted agency who is providing us with Susan, (and recently began also providing a behavioral therapist for some other social behaviors we're having issues with) has a language class, which we discussed as a possibility, but there was some concern raised about them possibly not having an actual speech therapist or speech pathologist on board, and we all agreed (or at least I THOUGHT we did) that she needed that level of expertise. So we ended the discussion on the note that the coordinator would look into that.

A few days later, I received a call from the agency's director, informing me that Mackenzie had been authorized to participate in their "language class." I asked her who taught the class. She said, "Teachers." I asked what their qualifications were, and she said, "They are language teachers." I again asked, "But what are their qualifications? Are they speech therapists or speech pathologists?" She replied, "No, they are teachers." That's all I could get from her, no matter how many times I asked the question - she wouldn't even tell me if they had a Master's degree. I finally told her that simply wasn't acceptable to me; that given how severely delayed Mackenzie was, I felt she needed the expertise of an actual speech therapist or pathologist, at a minimum for the evaluation, and that I would call our IRC coordinator to speak with her. The agency director tried to bully me into accepting the language class, telling me, "I JUST spoke with her yesterday, and she authorized Mackenzie to participate in this class." I replied that I JUST spoke with the coordinator last week, and we agreed that she could participate in the class IF there was a speech therapist or pathologist on board. She finally backed down and said, "Fine, then I'll let you call her."

So I called our coordinator and made my request, at which time she sort of hemmed and hawed..."Well, I'm not sure they'll authorize it..." (I'm not sure who the theoretical "they" is...) "Well, I'm not sure they'll let her stay in the infant program if she receives speech therapy..." (Are you threatening to take away her existing services if she receives speech therapy???)

And then the real kicker..."Does she have coverage for speech therapy through your private insurance? Because I'm going to need you to try that first, before Early Intervention will cover it." WHAT? I vaguely recalled some piece of paper I had been given when we first joined Early Intervention about private insurance, and I went and pulled out the binder I kept all Mackenzie's paperwork in...and sure enough, this piece of paper said, "Inland Regional Center may NOT require a family to access their private insurance for services which can be provided by Early Intervention." So I asked her if something had changed. "Well, yes," she replied, "we've been told not to give out that paper anymore, because it no longer applies." "Well, did the law change?" I asked. "Um, yeah, I, um, yeah, effective October 1, I believe...," but they're starting to implement it now to get everyone ready for it. "Can you provide me a copy of the new law?" "Um, no, I don't even have a copy of it yet...I guess I should do some research on it." Yeah, I guess...I guess you're not used to having parents question you like I am.

So in the meantime, I went online to the California Department of Developmental Services website...and boy, was I in for a surprise!!! Not only did the law change - it changed BIG. The insurance is only one small piece. As far as insurance goes - for any service that is considered medical - physical therapy, occupational therapy, speech therapy, etc. - families will be REQUIRED to attempt to obtain the service through their private insurance BEFORE Early Intervention will provide the service. Early Intervention will only provide the service if they have an actual letter of refusal to provide service from the family's private insurance on file. If the private insurance WILL provide the service, the family will be completely responsible on their own for paying any deductibles or co-pays they may incur - there is no reimbursement program and no way to appeal based on financial hardship...which means many children, I could foresee, will NOT receive the services they need, because their families will not be able to afford to pay for the services.

But that's not all. The eligibility requirements have changed as well...and this is HUGE. There used to be an entire category of items that qualified a child as "at risk," so that they could receive Early Intervention services...things like being born before 32 weeks gestation, or having a birth weight under 1500 grams, or having seizures in the first 3 years of life, or having a positive drug screen at birth (i.e. mom used drugs during the pregnancy)...all things that put baby at high risk for developmental delays. And research shows that the earlier intervention is begun, the better the chances of NOT having long term delays and problems - THUS the whole basis of the Early Intervention program in the first place. This category? GONE. Completely gone. These things no longer qualify a child for Early Intervention services in the state of California, effective October 1.

Finally, the amount of delay to be qualified has changed. Previously it was simply defined as a "significant difference" between the child's current level of functioning and expected level of development. Now, it is very specific. A child age 0-24 months must have at least a 33% delay in one of the 5 categories of development - cognitive, physical, communication, social/emotional, or adaptive. A child age 25-36 months must have at least a 33% delay in 2 of the 5 categories or a 50% delay in at least one of the categories. Many children who are "delayed," but who may not quite make this cut-off will no longer be able to start receiving Early Intervention services. (These new qualifications apply to NEW eligibility applications only - not to existing participants for continuing eligibility.) This is only going to result in more problems in the school districts further down the road when these children enter kindergarten farther behind than necessary, because they haven't received the services they could have at an earlier age.

As for us, I am grateful that we DO have private insurance which provides coverage for speech therapy for Mackenzie. And when I emailed her doctor explaining the problem with IRC, she immediately put through a referral for a speech evaluation, and within 3 days, we had one set up. Last Friday, I took her in to see an actual speech pathologist. Her assessment was even more grim than the IRC coordinator's. Mackenzie tested at 4 months for expressive language skills and 10 months for receptive language skills. And because they are attributing her delay to her cleft lip and palate, which is a medical problem, our insurance WILL provide her with speech therapy - with a qualified speech pathologist. "But only as long as she makes progress," they qualified. She is a fighter - so I am sure she will make progress. (I don't know WHERE she got all that fight from.)