Greetings,

After nearly 2 years and a number of medical professionals' not-so-helpful advice, we've finally landed on the SPD road. We're reading everything we can in order to do the best for our little guy. Each day has it's blessings and it's challenges. I look forward to learning more from you all and hope that I might offer a word of support in turn as well.

Peace and Restful Sleep-
AJINE

Welcome! How old is your son? Looking forward to getting to know you both!

Hi There,

Thank you for the greeting! I look forward to learning more about SPD. Just reading some of the posts today, I was in tears as I realized that I need not feel so isolated. Others are facing these daily battles too- having to explain to people, trying to maintain peer realtionships for "I" when the time together can be unpredictable, extended family that doesn't understand, going to the grocery store being an impossible task- but being so bone dead tired at the end of the day that shopping at 10pm is more like a sleepwalking exercise.... I've been so tired.

We have three kiddos- two boys 5 and 3, and a 13mo old girl. It's been a busy five years :-). Our 5yo is the little guy with SPD. It's been such a rough road the last few years. Right now I'm battling the insurance co who will deny coverage after "I" turns 6. As it is, they only pay 70%. We just found out how to help him after actively seeking help over the last 15 months, and now we only have a few months to "figure it out". Our state does not mandate that insurance companies pay for therapy classified as Neurodevelopmental Therapy, after the age of 6- so the legislation really needs to be changed. Do you know of advocacy groups that are working on that type of thing? In the meantime, we're paying privately for weekly therapy. It isn't right. It feels like another weight laid on our shoulders having a deadline.

We'll hope for the best, but sometimes I feel like Atlas-

Thanks for extending a "hello". Would you like to share a bit about yourself and your little guys?

Sleep well-
AJINE

Hi and welcome! My 5 Yo has SPD as well. I wondering with regards to your therapy payments if there is another way your diagnosis can be coded for greater insurance cooperation. Somewhere there is a list. For example, my daughter has SPD but under that umbrella she has hypotonia (low muscle tone) and before that in her case there was a medical crisis that seemed to be the tiggering event for her SPD so encephalopathy was originally the code that was used for her first OT evaluation (which insurance paid for). I'm not saying you want to lie or ask your provider to but rather to look at specifically how SPD effects him and see if any of those issues are covered under your insurance.

Hi There,
Thank you for the welcome AngelaVA! I am sorry to hear of all that has happened to your little one. It sounds as if you've become familiar with the "system". I understand exactly what you are saying and we've explored all of the codes. Unfortunately, my insurance company is very "strict" on the interpretation of the codes such that even in the initial ICD-9 code that was utilized would not place us under the Neurodevelopmental benefit, as his symptoms shape up to be neurodev in nature, they would then place his interventions under that ND benefit and cap us at the age of 6. Our OT says that she's running into this all the time.

Our original dx was 312.9 (disturbance of conduct), which doesn't scream neurodev, but due to the fact that we did not have an injury(although it was a traumatic birth that landed me in the PCU/ICU for 10days) or illness that precipitated "I's" sx that we can point to as a cause, the insurance company will stand firm in cutting our benefits at 6yo. It leaves us with three options, pay privately, move to a state that mandates coverage until the age of 18, or don't get him help. There needs to be legislation passed in our state (Washington)- so anyone working on that, I'm happy to help. Until then, my husband is talking to his company to see if somehow they can negotiate coverage as a part of their package. The company has the clout, we don't.

It feels all so arbitrary....when the stakes are so high and kids can improve with therapy!!! Just the few interventions we've tried that the OT has suggested, brushing for example, have made a difference. He was even able to wear a short sleeved t-shirt for half a day! Wow- seriously. Such a small victory, but a victory nonetheless.

Thanks again for the welcome- it's good to know y'all are out there.

Peace-
AJINE

My older son (10 yrs) wasn't diagnosed until he was 6 1/2 and we did evaluation and OT out of pocket (with medical flex spending as a reimbursement). But we were lucky that he got OT services in school so it wasn't a big deal that we stopped the OT center after a few months. He received services through his PPT/IEP and that was enough to help him. Plus as my son got older he has been able to handle more sensory things. He learned coping skills or his neurological connections improved or he matured--whatever it was, it was enough that he doesn't need help in that area as much now. Mostly working on his anxiety and social skills now.

Now I've been dealing with my younger son who will be 7 in September. I have an appointment for him to be evaluated on the 8th. He's not severe enough that it interferes with school (at least not yet) but it would be good to know what we can do at home for him and also to help him with his oral defensiveness. We'll see what the OT has to say.

Good luck with your insurance issues! Ugh! In the meantime, it might be worthwhile to see about creative coding to help with coverage! I know that our Ped has done this to get extra appointments to be covered by the insurance for us. And my son's psychologist said that we had reached the max number of appointments, but they convinced the insurance company to increase the number of appointments because my son goes to a weekly social skills group and insurance was going to allow only 20 visits in a year.

Glad you found us!

AJINE, you should contact your state Senators and Congressperson. Due to the healthcare law passed in 2010, children are supposed to be covered by insurance until they are 26 years old. They shouldn't be able to cut off your son's care at 6 years old.

You may need your Congressperson's support to fight for your rights.

Hi Lynn,

Thanks for sharing a bit of your story and the advice for the creative coding. We're working on it.....but so is the Big Insurance company. Researching school resources is the next step I think and figuring out who is pushing back in regards to the age 6 limit.

Best of luck on the new eval for your 6yo. I hope the OT is helpful-

Sleep Well-
AJINE

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Hi beck7422-

Thanks for the advice about contacting our representatives. That is a good step to take...although I'm a bit disillusioned about their efficacy. Nevertheless, it is a proactive step. I hadn't thought about the new health care bill, but for some reason I didn't think that it would impact benefits such as this. In my research on policies in WA, many cap the neurodevelopmental benefits at 6yo- reflective of WA law. That law needs to be changed. The brain doesn't even stop developing until 19 or so!!!!...and with healthcare professionals not being easily aligned on diagnosing SPD, you're lucky if you identify what's going on early enough to make the most impact. We've been working to figure out what's going on with our little guy and have only just found out about SPD......and now only months before "I" turns 6. We'll continue to do what we can after that, but it's going to be tough.

I will have to do some research in regards to the effects of the new bill. Thanks for the head's up.

Regards-
AJINE