Need Quick Feedback

iVillage Member
Registered: 04-07-2003
Need Quick Feedback
6
Wed, 07-05-2006 - 11:01am

After getting lots of help here before, I disappeared for awhile, but I'm back begging for more input.

We were on the waiting list for 8 months at Kennedy Krieger Institute in Baltimore to get testing, diagnosis, etc for two of my kids. This a.m. we finally got a phone call saying we could get an appointment next week. However, a couple of months ago, our insurance changed, and Kennedy Krieger doesn't accept our new insurance. Our insurance is a PPO, so insurance would still pay a portion. After two $300 deductibles and our 20%, we would still pay about $1100-1200 for the testing if we had it done at Kennedy.

Last week I also put us on the waiting list at Children's Hopsital for testing, etc. Our insurance will pay all of it, but we can't get an appointment until around November.

We don't have the money for Kennedy, but we could put it on credit. It would get us a more immediate diagnosis and school accommodations, therapies, etc. My kids' issues are not so severe that waiting would be the worst thing in the world, but I'm scared that if I don't take this opportunity, something else will come along to ruin our ability to get help. If it were you, what would you do?

FYI, kids are 11yo and 7yo (almost 12 & 8). Everyone has always poo-poohed my suggestions that something was wrong with them (I've been telling friends and doctors for at least 10 years), but last year I finally wrote down a list of my kids' behaviors, and when pediatrician saw the list, she finally agreed that there are some developmental delays. A therapist we were only able to see for a few brief visits gave us a tentative diagnosis of non-verbal learning disorder (NLD) which is very similar to Aspergers. Last week we also saw a neurologist at Children's Hospital who, after a brief visit, said he didn't think it was Asperger's but maybe NLD, but in his letter to our pediatrician, he said it was maybe mild Asperger's. I think my biggest fear is that I'll never get an appointment, especially since my kids' problems aren't so pronounced that I can get anyone to treat it like it's a problem (believe me, it's a problem to me and a problem to them). Besides it being nice to finally get a real diagnosis, my 7yo ds is starting to need school accommodations (minor), and I'll never get them without a diagnosis from a doctor.

iVillage Member
Registered: 09-12-2004
In reply to: hwife
Wed, 07-05-2006 - 11:34am

If it were me, I'd keep the Kennedy Kriger appt., but in the mean time I'd call my insurance company and see if they can recommend someone else who could give the dx before school starts -- perhaps a child psychologist/psychiatrist who can do this without so many tests. I think it depends on how much you think the dx will help them in school. I have put this type of thing on credit before, so if you feel it's that important for them to get the services right from the start at school, I'd do it. If it's really not that urgent, I wouldn't. I'd go for the Children's Hospital appointment and forget the expenses of the other. I always try to weigh in how important I think it is in the long run. If it's not so much, I'm not ready to go into debt. If I think it will have a long term benefit, I probably would. Don't you love this hurry up and wait business, LOL!

Hope this helps a little.

Kelly

iVillage Member
Registered: 03-26-2003
In reply to: hwife
Wed, 07-05-2006 - 6:07pm

Well, since neither an Aspergers diagnosis nor a NLD diagnosis will automatically qualify your kids for an IEP, I would probably wait and start getting my ducks in a row for requesting and getting an IEP.

The Kennedy Kreiger would be a great eval but this is where weighing the positives and negatives come into play. Can you afford to put that on credit? Are you commited to putting that much on credit for the benefit of the 2 kids and their special needs? If so then is this the best use of that money?

Oh and biggest question, what are you hoping to get with a kennedy kreiger evaluation?

If you want help with planning for school and getting an IEP you are going to need to go through the whole process with the district anyway regardless of outside independent evals. Outside evals help and the school has to consider it, but the best thing about independent evals is that you get an outside objective look at where the kids are so you can make sure that you are requesting and fighting for the appropriate services. But I will tell you that school districts DO NOT have to follow the recomendations of the outside source and often they do not. They may follow some or take it into account but usually they will not follow it entirely.

I think the best bet is to gather what you have. Prepare for an IEP and if you want to use that money, use it towards interventions, and go to children's hospital in november.

I agree that a full evaluation is key to knowing what to do, but you have some direction and a diagnosis to start the ball rolling with. An evaluation only gives information it doesn't provide treatment or help make things better.

Renee

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iVillage Member
Registered: 09-09-2005
In reply to: hwife
Wed, 07-05-2006 - 10:56pm

I took liam to KKI over a year ago, (luckily insurance was accepted).

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iVillage Member
Registered: 08-26-2005
In reply to: hwife
Thu, 07-06-2006 - 12:47am
I have to agree with Renee because no matter where you have the eval done you will still have to go through it all again with your district. I took Jake to a developmental ped at a local hospital who told me he was perfectly fine after an hour and I was told the same thing by the nuero. I eventually took him to Childrens who spent a great deal of time with him and had a whole team including a ST, PT and OT plus a psy sit in on the evaluation. We too had to pay out of pocket but it was worth every penny to have someone finally see everything we did but if I were in your shoes and your kids are already getting services through E.I I would keep your money and put it towards all the extra therapy sessions your insurance won't pay for. Good Luck!
Teresa
iVillage Member
Registered: 04-07-2003
In reply to: hwife
Thu, 07-06-2006 - 12:27pm

Thanks all. Due to storms in the area, I lost my internet connection almost as soon as I posted my question, so dh and I just had to muddle through on our own. Due to the expense, we ended up cancelling the Kennedy Krieger appointment. We're crossing our fingers that the Children's Hospital appt comes through with no problems.

Dee, where was the play therapist you used in Maryland? Did insurance help pay for it? I have had the darndest time trying to find anyone who provides any services my kids need. I assumed my area would be littered with them, but I can't find them. I may just not know what to look for. I even asked an OT friend if she knew where I could find help, but she only knew people through the school system where she also works.

I was interested to hear I'd have to have all my kids' evaluations re-done through the school system, especially since when I tried to get evaluations done before through the school, they did a "pre-evaluation" and told me there was nothing my kids were doing that interferred with their schooling, so no evaluation was done and no services would be provided. Admittedly that was a few years ago. My kids DO generally do well in school, but ds especially has days were he just can't organize his brain. Some days he does all his work, and other days he's doing well just to get his name on his paper. Fortunately since he's well behaved and since he had a teacher last year who recognized he was smart but just couldn't always organize his brain, she did not penalize him for the days or tests where he just couldn't get his act together. That's the kind of accommodations I want for my ds. That's also not something the school is going to see from just a few minutes of a "pre-eval." I was hoping that by having an outside diagnosis I could force the school to be more cooperative. I guess more than anything, now that I know for sure my kids DO have issues and I'm not just imagining everything, I can be a stronger advocate for them with the school. Where do I start? Who do I talk to at the school to start evaluations and accommodations? Also, do the schools do any kind of handwriting or motor skills therapy? My 11yo has AWFUL handwriting. Her teachers and I have a hard time making out what she's written, and even dd can't always read her own writing.

Thanks again for being here. I've said it before, but this board has truly been a gift from God to me both in getting us headed in the right direction toward diagnosis and in helping me keep my sanity. I so appreciate your support!

iVillage Member
Registered: 11-07-2004
In reply to: hwife
Thu, 07-06-2006 - 2:15pm
I agree with the other posters that said to save your money and go with the place your insurance covers. From what I am learning, there are so many things (therapy, social skills groups) that insurance doesn't cover and that money may come in handy then. Also, the diagnosis isn't going to guarantee the school will give your children all the services they need.