Getting nervous about developmental evaluation!

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Can you do an end-run around them and use your insurance to pay for more services? The real issue isn't the label or the diagnosis, it's the services: whatever you can do to get that to happen.

I assume the services he's getting are through the school? Does the place where you got the eval also offer services? See if they offer things like speech therapy and OT and if your insurance covers it. It will mean more chauffering for you, but less of a fight.

Maybe I am stupid, but it makes no sense to me that if he is "so delayed" that they have trouble testing him that they are not therefore granting more therapy. I can understand age being an impediment, but not delay. "Delay" makes me think they should give you tons of help so your child can progress to being more testable.

Last edited by ASDMommyASDKid on 19 Mar 2013, 4:53 pm, edited 1 time in total.

Yeah, exactly!! They just referred me right back to the county's early intervention program that he's already in. They are planning to *slightly* increase his therapy hours in a month, but they just don't seem to GET IT. They keep telling me that he's too young to do many more hours, that ABA is too intense for him, that I should 'wait and see' what happens before preschool, that they don't want me to feel like they're at my house too much, that a diagnosis will not make a difference at this age, that he's still "so little", etc. etc.

I've been harassing 3 different developmental evaluation centers for a second opinion, and none of them are even willing to see him for 6-12 more months!! Literally every clinic or treatment center that I come across in the region has sent me in never ending circles. They say "that's a great question, I don't know the answer though, so why don't you call so and so". Usually I've already spoken to "so and so" but if I haven't, that person inevitably gives me the same run around.

To make matters worse, while doing research, I stumbled upon this article that a woman wrote, highlighting the fact that she relocated to my county from the other side of the country because we supposedly have some of the best autism services in the entire country!! ! UGH

I've been following your story for awhile -- how old is your son now? About 18 months? Was this a private evaluation or through the early intervention department? It seems like you should still be able to take the report that shows the delays and use that to request more hours of therapy. Do you have the resources to pay for any additional therapy out of pocket?

You definitely need an advocate fighting for you at this point -- I strongly urge you to find one.

When you first came to WP, you mentioned that the house you and your husband bought turned out to be a real burden to maintain. Is there any possibility of selling it and moving to a different area in the near future?

Thanks for responding...he's 19 months now and it was a private evaluation. I just got off the phone with his EI service coordinator and it looks like the report will get him a few more therapy hours and they're adding PT, but I have to wait until his IFSP meeting next month to find out how many. I'm doubting that it will be much though. Even if I can get each therapist to triple their time with him that will only be 6 hours per week.



I agree, and I have been actively looking for one, but I haven't had any luck. No one seems to have any helpful advice, nor do they seem to know anyone who would.



Ugh, yeah, it is a burden. We had it on the market from August - January, and took it off because it was the dead of winter and we weren't getting any showings. We're in the process of re-listing now, so hopefully we'll find a buyer this spring. We would LOVE to move to a different area, in fact, we want to move to South Carolina (we're in NY now), and I have heard that they offer 30 hours per week of ABA to children with autism through a medicaid waver, but I first need to confirm if that's true, and see if my son would qualify (once we manage to get him diagnosed of course). Once we do sell, whether we stay here or not, we plan on renting something that is much less expensive then our mortgage currently is, so that will free up some money to pay for therapy out of pocket if we can't get any funding by then.

So I am gathering that you receive services through the Early Start program? Read the sheet that explains your rights. Where I live a typical program for a child with similar age is up to 15 hrs/week (for child ed/parent training 1x/wk., speech therapy consultations 3x/month and occupational therapy 3x/month) AND access to behavioral therapy services which could be 1-3 hours/day. IFSP meetings do happen every 6 months as new assessments take place but if you don't agree with the level of services you are getting you have a right to discuss the issue further with the Manager of the Early Start program in your area if your Early Intervention Coordinator isn't advocating for you. I know each State is different so re-review your sheet explaining your parent rights about services OR as someone else recommended find an advocate to help you with your cause. Ask your Coordinator for contact information for your local Family Resouce Center and they can point you to an advocacy group to help you sort everything out. California is the only entitlement State when it comes to these services, any chance you can move there?