Saturday, September 27, 2008

Outreach Smackdown

I am outraged.



And no, this is not even about Voldemort's dumber-than-a-post veep choice.

I had a long conversation yesterday with a good friend who lives in a shoe - she has so many children, I hardly ever see her.
Okay, I may have made up the part about living in a shoe.

Her daughter is two and 1/2 years old, was a 33 week preemie, but born 'acting more like a thirty week old', which essentially means that she was born with a delay. Other than a (common-in-preemies) minor heart defect, her delays were not of concern or anything apparently severe. She has been monitored by the university infant development program, and has met most of her milestones, but has always had a bit of delay in most of her development. But now that she is over two, those delays show up with more distinction.
We talked for a while about her latest triptych to the doctor circuit; her pediatrician recommended an eye doctor, who examined the tot and found that, other than the obvious strabismus, her eyesight was rather perfect, but he suspected a neurological disorder and referred her to a neurologist, and the neurologist confirmed a suspected processing disorder and also suggested that she may possibly have...cerebral palsy.
Oh, wow. Just casually tossed that one into my friend's unsuspecting lap.
So naturally, my next question was, "So, how many hours of early intervention are you getting?"
"Oh...well...we go to the infant development clinic."
"No, not that. The early intervention people. Who send therapists to your house."
"Oh no. We don't have that."
"Isn't your doctor the chief ped at that practice (which also happens to be the practice that treats my daughter)?"
"But he never mentioned early intervention to you? In the entire time you have been bringing your preemie child to him?"
" I think that the infant development people may have mentioned it once...but I confess...I thought 'ohgod, not another appointment I have to fit in!' and probably 'forgot' about it."
"Yeah, with your five kids, I am sure that was a deliberate oversight", I joked.
"But really. Your pediatrician? Never even mentioned? Early? Intervention? Seriously?"
"No, never."
I said I would need to call her back.

Then I walked up the road and threw myself into traffic. But I live in the mountains, and I was lying there for about twenty minutes when it occurred to me that not one car had passed. I got bored and returned to my house to call my friend back.

"Okay, let me explain to you what early intervention is like and why you want it. You are romping through a beautiful meadow, filled with wildflowers, someone is holding your hands at either side. That is the early intervention part.
You come running up to a cliff, whereupon the hand-holders abruptly stop and you jump off alone, landing at the hands (or feet) of the school district. That is when your child turns three. Yes, three."

"Oh. Whoa. As in, in six months."

"Yes. As in 'six months'."

"Do you have their number?" She wisely asked, and we wasted no more time chatting so that she could call the regional center post-haste.

One of the things our early intervention provider has been doing locally is outreach with pediatricians, after noting that many of the families receiving their services reported that their pediatrician suggested that they 'wait and see' when they shared developmental concerns about their young children. This is such a standard response; even I got it when I asked about Bubbles' speech at 20 months! The early part of early intervention is apparently lost in translation, and our doctors, those professionals who care for our children when they are sick, are seemingly unable to suggest intervention. Not only not suggest it, but also dismiss parental concerns, thereby often missing the window in which the most intensive assistance can be offered to a child.

Seems that someone needs an outreach smackdown, right quick.
Think that anyone would hire me if I branded myself as an 'Outreach Smackdown Specialist'?

While I am at it, another friend in a neighboring county was recently visiting and I asked her what kind of services she was receiving from her regional center for her autistic son. They moved from Texas less than a year ago, and her son, at the age of five, finally received an Autism diagnosis. I say finally, because she said she suspected from 18 months old that he was autistic. She said she was not getting any services from her regional center. I asked her why, and she said that he was over three, and therefore not eligible for early intervention services.
"But that doesn't matter!" I sputtered, "He has autism! He is eligible for help from them! Respite care, therapy!"
She had no idea either.
Both of the families to whom I refer are educated, well-informed parents. We all happen to be English-speaking. Can you imagine trying to wade through all of this information if you did not speak much English or were not privileged enough to have had an education?

So, for all the informed, misinformed, underinformed and slipping-through-the-cracks families out there, please read on to the five qualifiers that enable an individual to receive regional center services for the rest of their life. (This data is for California - I will start doing my research on other states, but if you know more about services in your own state, please let me know!):
  1. Autism
  2. Cerebral palsy
  3. Debilitating seizure disorder
  4. Mental retardation
  5. A syndrome which must be treated with mental retardation as a component.

Everybody should know these facts; these rights to those we love and those in need.


datri said...

Unfortunately, I'm not surprised. My ped didn't tell me about EI, either. I just happened to find out during my intense internet searches after I got my daughter's diagnosis. I had to call EI myself.

And after EI, no one told me there is ongoing service coordination available as well -- and respite and grants and diapers paid for thru Medicaid. I found out about this because I'm active online. Sigh.

Anonymous said...

I don't have need for early intervention, but my mother (who's only 57) has a HUGE list of medical conditions and is on Medicare/Medicaid. I often joke that if I had a social worker at my beck-and-call to tell me what to do with my mom (nurisng homes, assisted living, community-based programs, who pays, how long, new doctors, blah blah blah), I'd be happier than if I won a million dollars. It's confusing, ridiculously complicated, and emotionally draining....a lot like finding EI services, I imagine. Might want to put some serious thought into the joke of actually becoming an Outreach Smackdown Specialist. There are too many families who don't know what to do, and so feel like there's nothing they CAN do.

Anonymous said...

It's really a sad situation.
We got lucky... my 3rd kid had a speech articulation delay. Lucky part #1 was that it was my 3rd kid so that I knew that he should be talking better by that point. Lucky part #2 was that I had an online friend who told me to call the local regional center for a free evaluation. But in the middle there we went to his 2 year checkup and the pediatrician said, "Oh, lots of boys take longer to talk. Let's wait and see...". I ignored him, called the regional center, and got him 1.5 hours per week of private speech therapy for about a year. If that had happened with my first kid I would have followed the pediatrician's advice.
The best part is that Max now speaks more clearly than many kids his age and I don't have to fight the school district to get him therapy.
Anyway... you go, girl! -Anita R.

gwendomama said...

Yeah, Anita! Welcome back, too. And I am glad you did not listen to your ped. a TRUE success story.

Ben and Bennie said...

Then I walked up the road and threw myself into traffic. But I live in the mountains, and I was lying there for about twenty minutes when it occurred to me that not one car had passed. I got bored and returned to my house to call my friend back.

That would've totally had me laughing had this not been one of those things that make my left eye twitch.

Mama Deb said...

Now when you call me 'educated,' there might be some people who'd disagree that a University of Oklahoma grad qualifies as such :)
And yes, I will be calling the regional center this week! Hope we weren't too disruptive in class today.

Shannon and Carey said...

I love ECI!!!
-Shannon in Austin