Is evaluation supposed to cost so much

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jstriding
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10 Oct 2011, 8:11 am

Thank you everyone for your helpful comments; we are coming up soon in our health enrollment and we're looking at switching from HMO to PPO due to ability to self refer.

Also there are more options for specialists in the PPO versus HMO (and I'm told, "better" choices).

One possibility we can look at is enroll in PPO for a year; so how the costs stack up. We can always re-enroll in a HMO the next year.

An issue that I've read here and elsewhere on WP is the age of diagnosis: how 4 years old is still a young age to be correctly diagnosed.

I've seen youtube videos (granted, not medical evidence) of children who are autistic (according to parent) as young as 2/3 years old who exhibit behaviors like my son particularly the nonproductive play and echolalia. I wonder why I haven't read more info on the age of diagnosis. Maybe I haven't read enough yet.

My question is what I as a parent should do while I'm waiting, while not knowing definitively what's going on despite our strong suspicion of ASD. Having something to do takes my mind off the fear and rumination about "what if", but honestly I don't know what I'm supposed to be doing right now.



bjtao
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10 Oct 2011, 8:31 am

Right now, while waiting, you should be reading and doing research about ASD if your suspicion is very strong. Even if it ends up not being ASD, the additional information is not going to hurt you. Wishing you the best!



jstriding
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10 Oct 2011, 9:11 am

Thank you bjtao!

I've started reading http://www.autism.com/index.asp
and being here on WrongPlanet.net, which I think has provided a tremendous source of support and valuable insight from parents who know what I'm going through.

If you have suggestions for reading please let me know.



zette
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10 Oct 2011, 11:33 am

I created a list on amazon of the books I found helpful.

Books helpful for preschool Aspergers kid

I particularly recommend starting with the first two on the list:
Asperger Syndrome and Young Children: Building Skills for the Real World by Teresa Bolick

Parenting Your Asperger Child: Individualized Solutions for Teaching Your Child Practical Skills by Alan T. Sohn

I would suggest that you go ahead and find a social skills group -- they are hard to find for the under-5 crowd, but they do exist. You want something "experiential", most likely run by a speech therapist.



DW_a_mom
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10 Oct 2011, 3:11 pm

Chronos wrote:
DW_a_mom wrote:
jstriding wrote:
Thank you for your responses everyone. It was very helpful to know this was "in the range".

We want to do the right thing but also need to be mindful about finances so we will be able to pay for the resources we need (that the school won't provide) for our child.

We have an HMO right now and hate having to get a referral EVERY. SINGLE. TIME. It is such a huge time-sink that we're considering returning to a PPO. PPO costs much more (out of my spouse's paycheck) to go for a PPO but the time saved not having to go wait for a primary care to refer out may be worth the extra cost. PPO also offers more options for providers.

But given our current circumstances we will be prudent and go through the insurance system first. I'm bringing my son to the pediatrician next week for his wellness appointment and I'll be bringing my "list of observations" for the pediatrician to get a referral for a psychological evaluation.

I'm bracing for the financial impact of the diagnosis... and what we have to do to "do right by our son". At this point I'm even looking at the possibility of withdrawing from his 529 (since if he doesn't get the help he needs, saving for a 529 seems almost questionable, but I'm feeling very down about things right now).


A little off-topic but since I did the research at one point ...

I ran the numbers on insurance options a few years ago, including all the tax effects, and the interesting thing is that if you get really sick, they all play out within a few thousand dollars of each other.

But when you don't get really sick, the options can make a decent difference.

My conclusion was that an HMO is still the best bet in the childbirth / toddler years, when you don't want to factor cost into decisions on taking your child to the doctor.

Once the kids hit braces et al the best bet is to go with a high deductible / HSA combination. You can use pre-tax dollars to fund things not covered by insurance, and that is a nice benefit. Will play out the same way for uncovered ASD treatments.

PPO's, where you try to get the best of choice and coverage, play out as the most expensive in all scenarios.


But with the PPO's, doctors will pursue things they think will ultimately lead to an improvement in your quality of life but know they would never be able to convince an HMO to pay for.

There are a lot of things that were overlooked when I was younger (and had an HMO) that I'm paying for now. When I had an HMO, I also had to wait as long as three weeks to get in to see my primary care physicians, who were worked like slaves, and half the things they ordered took months to be approved and were usually denied.

With a PPO I could get in to see my doctor the same week, and frequently the same day. They were never rushed, and didn't hesitate to suggest preventative care. The down side, of course is the cost. I suppose it comes down to what makes one more miserable. Bad health or crushing debt.


I only said I prefer HMO's for the pregnancy / infant years. After that I am for high deductible plans with an H S A (health savings account). That combo gives you all the control of a PPO plus some, and most cases works out to less expense overall. The downside is that you have to see and pay the bills, but you just remind yourself that the math really does work out. All my friends who are doctors have H S A plans for themsleves.


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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


Chronos
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20 Oct 2011, 2:28 am

DW_a_mom wrote:
Chronos wrote:
DW_a_mom wrote:
jstriding wrote:
Thank you for your responses everyone. It was very helpful to know this was "in the range".

We want to do the right thing but also need to be mindful about finances so we will be able to pay for the resources we need (that the school won't provide) for our child.

We have an HMO right now and hate having to get a referral EVERY. SINGLE. TIME. It is such a huge time-sink that we're considering returning to a PPO. PPO costs much more (out of my spouse's paycheck) to go for a PPO but the time saved not having to go wait for a primary care to refer out may be worth the extra cost. PPO also offers more options for providers.

But given our current circumstances we will be prudent and go through the insurance system first. I'm bringing my son to the pediatrician next week for his wellness appointment and I'll be bringing my "list of observations" for the pediatrician to get a referral for a psychological evaluation.

I'm bracing for the financial impact of the diagnosis... and what we have to do to "do right by our son". At this point I'm even looking at the possibility of withdrawing from his 529 (since if he doesn't get the help he needs, saving for a 529 seems almost questionable, but I'm feeling very down about things right now).


A little off-topic but since I did the research at one point ...

I ran the numbers on insurance options a few years ago, including all the tax effects, and the interesting thing is that if you get really sick, they all play out within a few thousand dollars of each other.

But when you don't get really sick, the options can make a decent difference.

My conclusion was that an HMO is still the best bet in the childbirth / toddler years, when you don't want to factor cost into decisions on taking your child to the doctor.

Once the kids hit braces et al the best bet is to go with a high deductible / HSA combination. You can use pre-tax dollars to fund things not covered by insurance, and that is a nice benefit. Will play out the same way for uncovered ASD treatments.

PPO's, where you try to get the best of choice and coverage, play out as the most expensive in all scenarios.


But with the PPO's, doctors will pursue things they think will ultimately lead to an improvement in your quality of life but know they would never be able to convince an HMO to pay for.

There are a lot of things that were overlooked when I was younger (and had an HMO) that I'm paying for now. When I had an HMO, I also had to wait as long as three weeks to get in to see my primary care physicians, who were worked like slaves, and half the things they ordered took months to be approved and were usually denied.

With a PPO I could get in to see my doctor the same week, and frequently the same day. They were never rushed, and didn't hesitate to suggest preventative care. The down side, of course is the cost. I suppose it comes down to what makes one more miserable. Bad health or crushing debt.


I only said I prefer HMO's for the pregnancy / infant years. After that I am for high deductible plans with an H S A (health savings account). That combo gives you all the control of a PPO plus some, and most cases works out to less expense overall. The downside is that you have to see and pay the bills, but you just remind yourself that the math really does work out. All my friends who are doctors have H S A plans for themsleves.


I've never heard of these. I will look into them. Thank you for the tip.



blondeambition
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22 Oct 2011, 7:38 pm

You should be able to get the school district to do an evaluation for autism. I got a full autism evaluation and IQ test through my school district by calling the special ed department and threatening legal action. (They did not want to do further testing on my older son after he initially qualified for special ed due to failing a social skills test; however, they ultimately did the full testing for autism that they were supposed to do when I put up a major fight. They came up with a finding of ASD and widely varying scores on different sections of the IQ test--which explained a lot.)

In my school district (Austin Independent School District, in Texas), the school district has to consider the advice of outside experts, but the findings of the school district experts are ultimately controlling.


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jstriding
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22 Oct 2011, 8:32 pm

Thank you Blondeambition; I agree with you on getting the school district to conduct an evaluation.

Right now we're paying out of pocket for independent evaluations to confirm the pediatrician diagnosis of autism. The school's policy is that it evaluates only once every 3 years but of course, parents can request evaluation annually.

At this time we're choosing to this independently for strategic reasons, without resorting to overt threatening of legal action (for now).



Chronos
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23 Oct 2011, 12:36 am

jstriding wrote:

At this time we're choosing to this independently for strategic reasons, without resorting to overt threatening of legal action (for now).


So you have discovered that the school district is not your friend and does not have the best interest of your child at mind then?



jstriding
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23 Oct 2011, 12:38 am

I am sad to report that this has become my belief and my observation. I wish that I am wrong.



littleshadowfeet
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27 Oct 2011, 6:05 am

our evaluation cost about $3000. The wait time for medicare-covered services was way too long so we chose to go private - I'm now working full time to cover the cost of therapy. It's insane.