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Response to Yesterday’s Comments


Wow, lots of great comments and advice yesterday. I’ll see what I can address:

I did a good bit of checking around when TT was denied. I talked to several people who had children who were denied, but there are two who stood out the most. One child had worse issues than TT and they were denied, the mom got an attorney and fought it, and lost. Another mom, with a child with issues a whole lot worse than TT, got an attorney and fought and won. But the “services” she got were a joke. She ended up going back to court because the services were so bad, and was basically told by the judge that these are the services available, and if they aren’t good enough for her then too bad. She’s back to paying for private services, because she says the county services are a total waste of time.

In both of those instances the parents spent thousands on a court battle and still ended up paying out of pocket for services. So my decision was to protest in writing several layers up, just far enough that my protests were in writing – documentation specifically worded to be used in TT’s behalf if we retested at a later date.

Our speech therapist is, well, let’s just say she’s made a name for herself, and she’s very respected. And she has lots of letters after her name. TT’s most recent testing (done by her speech therapist) was done close to her fourth birthday, over several sessions. Some of her receptive language was up around the 7 year old range. Some of her actual speech was down in the 2 year old range. And some of it was only six months behind. She’s now half way decent at making individual sounds, it’s stringing them together into words, and then stringing words together into sentences, that trips her up so bad. I asked the speech therapist again at that point if it were worth going back to the county and she said she would write letters and support me if I did, but based on what she’s seen them doing, they would still deny TT any services. Part of that reason is that they count any sound she can make, and don’t take into account whether or not she can form words with that sound, they just look at whether she can make the sound or not. If that’s all you’re looking at then she’s not behind enough for services.

At this point I will apply for the county to do their testing again towards the end of this school year. TT will spend a day with her new Kindergarten teacher at the end of the year, and that will give the teacher enough “official” time with TT to be able to make her own recommendations. I’ll be going back at the recommendation of a very respected teacher who has received all kinds of awards for being such a great teacher. Apparently, that can make a difference.

Our speech therapist is very familiar with how the school system’s special services work, and she’s been a wealth of information. But she isn’t the only one I had giving me advice. Some of the other people I had giving me advice were: my EI social worker, the EI occupational therapist, a former EI administrator who was working in the private sector at that point but I had a good enough relationship with her to call her and talk to her to get advice, a member of the school board who is a close friend of my mom’s, a mom in GG’s class who has a bio child with a lot of special needs (and who has fought the county over services for years and even though she gets services, she still pays privately for some as well), a few teachers at GG’s school, the principal at GG’s school, a whole lot of moms in the local FCC group, and my personal doctor (who actually has more experience in this sort of thing than our pediatrician, but that’s a whole different story). The point is that I had a lot of people giving me advice, and the advice was pretty much the same across the board. Yes, I could get an attorney and sue, and I might even win, but I probably wouldn’t win, and even if I did win, it didn’t mean I’d get services that would actually help TT. After talking to a bunch of people it became clear that if the county offers services then you get competent people working with your child, but if you fight them for services then you get a retired grumpy teacher who has taken enough classes to qualify to give those kinds of services and make a little extra income. Then the child starts hating therapy, and, well, it can only go downhill from there.

Our health insurance isn’t going to touch anything to do with speech therapy. We have one of those plans that is great at some things (like prescriptions, and hospital stays) and terrible at other things (any kind of lab work, and anything that could be construed as something other than medical). I’ve learned to be happy for the wonderful parts of it and to just live with the not-so-good parts of it. The local EI program needed our insurance information so they could attempt to get them to pay some of it, and they didn’t manage to get the insurance company to pay any, either.

As for some of the questions asked: TT’s spelling is perfect (she’s made a 100 on all of her little spelling tests, and occasionally spells GG’s spelling words for her when we’re going over them), and her reading is well ahead of where it should be at this point. As I said, she’s a very bright little girl. She tests for most everything as being far ahead of her age… except for the categories that have to do with creating language. Her receptive language is impressive, with her understanding not just language, but concepts that she’s not supposed to be able to understand for several years. Her teeth are not perfect but not bad enough to cause speech issues.

It’s nice that it works differently in other areas of the country. But it does not work here as many of you are saying it is supposed to. I’m aware that if I lived one county over that the county would be paying for us to see the speech therapist we currently see. But, we’re not moving to that county. Property taxes are astronomical there, more per month than we currently pay for speech therapy in a month. Which is probably why they can afford to pay for it. So, I pay for services. (Plus, we love our house and neighborhood, and GG’s school is incredible.)

I had not considered talking to our local university, and that is something I’ll look into. Though I really think if there were a program available that someone would have told me about it.

I will note that I am not paying the $300 and $400 an hour that many of you are quoting – I pay about half of that. I found out what the EI program was paying per hour when we fell under EI, and worked out a deal with the speech therapist so that I’m paying that amount as long as I pay it when services are rendered and they don’t have to bill me. As I said, I had a great relationship with the EI people, enough so that I had their help trying to transition over to county services. They really wanted to see TT continue to get help, but they apparently knew from the start that the odds weren’t that great, so they did everything they could to help me from the start.

I think I’ve responded to most of the things brought up. I am more than capable of taking a legal fight as far as needed if I think there can be a positive outcome. But in this case it seemed my money and energies could be better spent just paying for services and spending time working with TT on my own as well. I appreciate that there are areas of the country you can fight this and get a positive outcome, and I appreciate that many of you want to see me fight it. But others have gone that route and not been in a better position at the end of an expensive and nerve wracking and time consuming legal battle. So my choice was to skip the drama and just deal with it.


 
 
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10 Responses to “Response to Yesterday’s Comments”

  1. LouiseMe Says:

    RQ, I totally understand where you’re coming from. It seems very American to just sue somebody when you’ve been wronged, but as they say, you can’t squeeze blood from a turnip. I have a friend who’s a lawyer and she always says that you can sue someone who doesn’t have any money, but even if you’re right and you win, you’re still not going to get any money. It sounds like if you did pursue this legally, even if you won the services would be woefully inadequate anyway. It’s definitely best to focus your energy and resources on directly helping TT right now.

  2. nanbwill Says:

    The main reason we went the private therapy route was knowing our DD needed therapy NOW, not after 6-12 months evaluation and fighting for services. We are able to pay for it through our Flex spending account, so I try to budget the $ there to at least save the taxes.

  3. violet Says:

    We are using the services offered thru the local college…awesome, up to date on the research out there (of course), not overworked or overwhelmed, energetic, supervised etc etc. Definitely worth looking into…even if you use it to supplement what you are already doing…

  4. mom2be Says:

    I know it’s hard for some schools to find the resources to provide services. I’m an SLP and have worked in the school setting in 2 different states, the pediatric rehab setting, the private therapy setting & ECI. We have a shortage of therapists in our field and I know PT & OT do as well. I hope that your district doesn’t find themselves incompliant with the “No Child Left Behind” or “Right to Intervention” regulations. It sounds like it is a small district with limited resources & unfortunately the kids pay the ultimate price… There was an article that came out in the latest ASHA Leader (our professional organization’s publication) that says starting on Jan 1, 2010 – insurance carriers for Federal employees will have to provide for pediatric speech therapy services. Don’t know if that will help you or not. But it’s always good to know. Good luck & I hope that TT continues to make good success!

  5. mom2be Says:

    that was supposed to say “progress”….

  6. sniksa Says:

    Excellent research article on the subject of language development and educational impact on adopted children. I found these articles to be very informative and right on with our DD hope you can locate them, I do not have them anymore
    Deccember 08 issue of
    ASHA Leader (a professioanal journal)
    by Dr. Sharon Glennen

    Topics in Language Disorder (early in 2009)
    Dr. Glennen, Karin Scott, Dr. Roberts
    an entire journal

  7. hann23 Says:

    RQ, I think you are handling it great. I know I sometimes feel that it’s just an endless battle to get what our kids need. It’s hard to hear when someone else isn’t getting the support that their child needs from their own county. It happens all the time though — everywhere. I think when you have a noticeable birth defect — i.e. cl/p, it makes it much easier. There is no refuting the giant valley at the top of my child’s mouth. So the county provides the support. It’s not right, but I think that’s why he gets all these resources.

    Even with the support, my son still needs private weekly therapy. Luckily our state has what is called a disability loophole for medical assistance. Thus, anyone with a physical disability can apply for medical assistance. It has saved us on private therapy.

    You would need a doctor’s note though. It’s another angle if you need it.

    As for the university, my friend’s daughter also wasn’t getting enough through the county and she didn’t qualify for medical assistance. Somehow, she figured out about the local graduate program and asked. It was a lifesaver — literally. Her daughter is no longer as angry and frustrated as she was.

    It sounds like your therapist is really awesome! Hang on to that one. I again want to thank you again for bringing speech up. It’s a significant part of some many of our lives.

    Hann23

  8. waiting2bmummy Says:

    Hi, Just chiming in, haven’t read all the other comments in both posts. Has she had her hearing tested as well? I am hearing impaired and sometimes words I know don’t sound the same when I am saying them, it can get frustrating sometimes…If you are in the Dallas area..Callier Center for Communication Disorders (thru UTD) is good.or they maybe able to recommend with a college in your area..Sounds like you have a great plan. Good Luck.

  9. JourneytoMia Says:

    I don’t know how to put this where it goes…I know it’s off topic, but on a board that I frequent I saw already this morning from Spain that they got through March, but no days in April this round.

  10. my_mys_dad Says:

    Dear RQ,
    Speech Therapy is one topic that I am passionate about. Part of my job is speaking internationally, and I am the result of 7 years of speech therapy. My daughter sounds very similar to TT – receptive language is advance, spelling is great, forming sentances and talking is a problem. She is 6 and has had speech therapy for 3 + years. Where we live, there are two systems. The first one works from age 2 to 6. Then the other one takes over. She got excellent service until she turned 6. Then we were suppose to be transitioned to the other service, but her paper work was lost. She is now on a waiting list, but that required my followup and we lost 6 months while we were waiting for services to start. Luckly, we are in the position to also do private, so it looks like she will just loose about a 1 1/2 years of double therapy. The thing that gets me about this is that government is missing the incredible socal cost/benefit of speech therapy. There are more than enough studies that show if you correct problems when the child is young, then they can excell. If you do not correct them, then the costs can be much higher. It is in everyone’s best interest to invest in our children! It sounds like you have everything well in hand. Good luck