Musings of a Marfan Mom

The Speech Therapist’s Evaluation

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Monday morning I called the speech therapist’s office and by a true miracle, they offered us an evaluation for Menininho THAT AFTERNOON. I just about broke down crying on the phone, I was so grateful that it wasn’t going to take the predicted 3 months.

The evaluation took an hour and a half. The speech therapist was nice enough, although she did a few things that made me think I wouldn’t want her treating my son full time (like telling me he could play w/ a certain toy and then immediately scolding him for it, which set off 2 minutes of hysterical crying, and spending the WHOLE session trying to make him play with a toy he did. not. want.). In the end, she told me that he has a moderate delay in 3 areas: speech, language, and cognitive. He’s functioning at the level of a 9 month old, which is 6 1/2 months behind his age. He also seems to have hit a plateau and stopped adding new skills at around 9 or 10 months, as opposed to steadily improving just at a slower rate than he should be.

The therapist explained that the test she administered is not predictive. This means that although it identifies a problem, it can’t tell us how severe of a problem that is. Menininho might catch up in all areas with a few months of therapy, or just one area, or none of them. If he quickly catches up it was just a delay. If he doesn’t, it’s some kind of disorder (like auditory processing disorder or severe receptive language delay). The only thing everyone has ruled out at this point is autism.

Menininho needs therapy sooner than later. I was informed the hospital has a 3 month waiting list and while he would be put on it, I would do well to find him a private therapist instead. He also needs to see a developmental pediatrician, which will take 1-3 months. I’m calling about that today. Apparently county services (Early Start) are for kids ages 2+. I am waiting for a confirmation on this but you can bet I will fight them tooth and nail to get my son in. Not only are they free, but they come to your home.

But just in case, Mark and I immediately started looking into private therapists. Here’s the thing though: they don’t accept insurance. Can you believe that??? How elitist is that? Not every child who needs services can get them free through the county, for any number of reasons. Even the kids who do get services may not get enough. For instance, the author of a book I read over the weekend talked about how her county’s program would give her son therapy twice a week, but he needed four times a week, so she had to find a private therapist instead. You might wonder “how expensive can therapy really be?” The place I called, which seems to be most qualified to handle someone with Menininho’s issues, charges over $150 an hour and that’s pretty average. It’s a lot more than that for an evaluation. Another place charges $150 an hour to put together the progress reports…so about $300 every time you need a print out of what your kid has been doing.

I am confident we can work out reimbursement with our insurance company eventually. They’ve been very good to us so far. But battling insurance for reimbursement takes a lot of medical literacy. I have spent years cultivating this skill…I even went and got my Masters in the area, but it still sometimes baffles me. It is a SKILL though. MANY people who would be able to get reimbursed for services don’t because they don’t know how to fight the system, or are so busy working that they don’t have the time. It’s not like most insurance companies are shouting “hey, we have this cool program!” from the rooftops.

I’m not going to get into a huge debate on universal healthcare, but just think about this. All of you who say that if people just worked hard enough they could afford their care, that healthcare shouldn’t just be “given away,” please tell me what else we should be doing. If my husband and I are in the minority of Americans, with advanced degrees and a good job, where my husband works 10 hour days, plus health insurance, and we still might have to fight to get reimbursed and front a lot of money in the beginning, what about everyone who isn’t as fortunate as we are? How are they supposed to get these NECESSARY services for their children? Do they not deserve it? Should their children be forced to get farther and farther behind?

Sorry if this post is kind of all over the place. I’m just really, really tired. Hoping to get insurance approval by the end of next week so Menininho can start services in mid-June. If we can get him into a local grad student program though, that will be even better. :-)

POST EDIT: I just got a packet to fill out from the county. Not only does it not say anything about an age 2 minimum, but it talks about kids ages 18 months. I think that speech therapist fed me really bad info! Filling it out tonight, then waiting to see if Menininho qualifies for the next step in evaluation with them.

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13 Comments

  1. How odd that your early intervention program only takes kids 2 and up. I thought the whole point of those was to serve kids birth to 3, since the public schools become responsible at age 3. So what…they only have kids for a year, from age 2 to age 3? I’m really curious about how they manage that one, and wish you luck in getting your son those services! We had home-based services for Leah from birth to 3 and they were great.

    I’d also hazard a guess that part of the reason private therapists don’t take insurance is more of a time-management issue than elitism. I have a friend who was in private practice for psychology for years, and she was one of the few private therapists in our area who took insurance, mostly because other therapists just didn’t want to deal with the extensive time and headaches involved in dealing with insurance companies. When you’re in private practice and don’t have an office staff to handle it, it’s all on your shoulders. Not that this insight helps you guys at all–the burden of dealing with the insurance companies now falls on you instead, which isn’t right either.

    Hmmmm…health care reform anyone? You’re completely right. You have done everything you should, and you’re still struggling to get the health care your child needs. You’re not the problem, the system is.

    I wish you all the best in getting the right services for your little guy!

    [Reply]

    marfmom Reply:

    Ellen, you’re right, I know they don’t do it with the purpose of being elite…it’s just such a pain to deal with insurance, esp. as a smaller practice. :-/ But, sometimes it feels that way because the end result is that the only people who can access those services are those with the money to pay or those with good health insurance and the know-how to collect the reimbursements (plus the money to front at the beginning).

    And thanks Jen, I will check! I had just assumed that the only therapists school districts used came from the county programs. Guess not! :-)

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  2. Just a quick thougth that popped into mind– Most school districts have therapists on staff. Ours does and that is who works with Paige. I wonder if just having a conversation with one or two in your area might lend some insight or provide some direction. They would be used to working with the current system and know the ins and outs plus if they know that your child might be one of their students in a few years, there is some incentive.

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  3. I know our school district have all their own therapists. That’s a great idea to check there. Some school districts also offer an early intervention program to help kids 0-3.

    I’m totally weirded out by the fact that your early intervention program doesn’t start until 2. I’ve never heard of waiting that long! That’s completely bizarre!

    I hope you can find some help. Good luck!

    [Reply]

    marfmom Reply:

    I’m wondering if that can’t be wrong. I mean, I know our state has had some terrible funding cuts, but to cut out birth to 2 just seems to defeat the whole purpose! I should know for sure in a few days…

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  4. Maya and Mark,

    You need this like you need a hole in the head..you all have a lot on your plate and my prayers are with your and Menininho. The adorable little guy!

    You know where I am at Maya if you need to talk. I know you have been very stressed and down. I can see it in your posts to me. I hope things work out..don’t worry, they will. they always do!

    I can’t believe a therapist won’t accept insurance???? That is just weird in my book! What are people to do like you said? That is just so wrong. Our country claims to be so great when in reality we are probably the most F*** up country in the world. I really mean that…other than Africa,.

    Good luck to you and i’ll keep up on your notes..I am sos sorry this is happening to you all and Miles.

    Hugs,

    Jenny

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  5. Definitely look into your local school district. Our school district provides things like speech therapy, physical therapy, etc. to kids before they are old enough to attend school. We contacted them shortly after Haley was diagnosed with Marfan syndrome just to get her in the books and to make sure there wasn’t anything we needed to be watching at that point in time. I would think that all school districts have programs of this sort. Keep up the fight!

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  6. Part C of the Individuals with Disabilities Education Act stipulates that children birth to two years must have access to early intervention services, so you should not be forced to go to private therapy only. You should get an Individual Family Service Plan to set goals and outline his early intervention services. If Menininho still qualifies for services once he turns three, this will switch over to an Individualized Education Plan.
    It’s so great that you’re being proactive and making sure that Menininho gets what he needs from a young age–sure to help him in the long run!

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  7. I’m glad you got an appointment! And I hope the insurance stuff works out. We still need to figure out what we’re doing insurance-wise. If there was at least a public option, I wouldn’t be so worried about the next couple of months.

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  8. Wow, that’s a lot to digest. I just went to a seminar on Developmental Language and Learning Disorders. It is amazing how interconnected a lot of the different disorders are. I would recommend looking into Shelley D. Smith’s work. In many cases if a person has one developmental language or learning disorder, they have a second one as well that often times gets over looked and so don’t get the proper therapy.

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  9. Maya, I’m new to your blog and have so many thoughts about your experience swirling in my head that I don’t have time to share now – hopefully this weekend. I’m not sure which state you are in, but I will chime in agreement to check with the school district. My middle son Ben (who does not have Marfan) did have a speech delay. Our pediatrician (who ordinarily is on the same page as me) suggested waiting for a speech eval when Ben had fewer than 14 words at age 2. I ran it by the school’s SLP who with great frustration urged me to have him tested. So I did, and he did qualify for speech services through the county. Our school (in NY State) has a Committee on Special Education for Preschool Children which provides svcs for kids age 3-5. Prior to that it’s covered by the county. It’s an education for parents too, isn’t it?? You have a lot of support here I see, and a lot of determination. Just keep asking questions and don’t let anyone intimidate you!! Best wishes!

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  10. Thanks for stopping by my blog, b/c it brought me over here. So interesting!

    My daughter was evaluated by the county resource center at 18 months for speech delay (they said her expressive speech was that of a 3 month-old, which was bizarre b/c she could say a few words, which you can’t at 3 months!). It took two months to get the diagnosis and get scheduled, but we got six free months of speech therapy, after which she didn’t need the service anymore. But my friend’s son has Williams Syndrome and has multiple issues, and he gets free service (he’s evaluated every 6 months) until he turns 3, after which he will go through the school system.

    No idea if this info was helpful, but I hope you find other options for your adorable son!

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  11. I feel for you Maya. Going through the whole process of trying to pin point areas of concern, diagnosis, etc. It’s all very frustrating and it magnified even more so when it’s concerning a young child. My now 15-year old son went through the gammut (sp? lol) of testing from tthe age of 3 so I totally empathize with you. It’s not fair that services are accessible only after jumping through a million and one hoops. I sure hope M’s testing and services go as smoothly as possible. Keep us all updated!

    Kristi, Live and Love…Out Loud
    @TweetingMama

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