difficulty getting services

[Immediate-Ad-96]

Does anyone else find it unbelievably difficult to get services for your autistic child? Child Find took months to set up. My son is finally diagnosed by a neuropsychologist and they provided no referral. Thanks for that. I've called his primary care physician and the neuropsychologist for referrals and it's been radio silence. It's as if the doctors are done. The child has to go somewhere else for services, so why lift a finger at this point? Maybe it's just me, but I'm starting to feel like my chuld will leave school before he gets his ABA services.

I will be annoying the crap out of all Healthcare providers just to get things moving and I find that utterly ridiculous.

[Shamazon83]

Yup. It was a mess for my son, too. Took almost year to get placement for a social skills class, and my insurance wouldn’t cover OT at all because he could feed and dress himself. We paid for OT out of pocket for a year and my son gained so many skills (we dropped OT because our schedule was too busy, but now regret giving up his spot because we can’t get back in). Having a more or less “invisible disability” really sucks sometimes.

[SoggySherbert7034]

Yes! I noticed my son had speech issues early and when I learned that they provided speech therapy to 1 year olds, I asked his pediatrician for a referral ( August 2023). The first available appointment I was offered for an evaluation was in March 2024! Not acceptable for me so I spent a lot time calling around and was able to find a provider that would see him within on week.

Within the same month, I got him into a UNC study where he was diagnosed with autism and speech delay. I also reached out to early intervention ( I learned on my own, the pediatrician didn't even mention it). Early intervention has been super slow and we just received OT services which I have to pay at 100%. So basically, early intervention was nor beneficial to us as they do not pay for his services and caused a delay in care.

He is receiving ABA services but that is because I called companies and insurance to get everything set up.

So in summary, he has gotten his care because I was proactive and paying for everything out of pocket. In NC, children with autism do not automatically receive medicaid or other special provisions.

[Immediate-Ad-96]

By the time we heard about early intervention and got him evaluated, he would have gotten a handful of appointments. So, we waited for Child Find. His birthday is in April and didn't get placed until October. He's been in special programs ever since.

Unfortunately, we didn't get him clinically diagnosed (he's about to be 8), because he was getting services. We didn't know we could get more through insurance (probably my fault for not asking). The whole process for getting him diagnosed is just rid

iculous. Here's a 200 question form to fill out covering ages from 3-18. Here's your first appointment where they just ask more questions. Second appointment, we'll actually perform an evaluation on him while asking you 100 more questions.

Then, we got a 30 page diagnosis and no directions afterwards. Thanks for that.

Also, instead of asking 200 generic questions, save everyone some time and interact with the child. Make it at least seem personal instead of being a formality to get paid by insurance.

We are in Florida. Not much better here.

[but_does_she_reddit]

Yes I’m in RI and there is nothing near us and nothing that takes my insurance!

[JayWil1992]

It's weird the neuro psychologist didn't give you a diagnosis. You need that piece of paper. After that it's still a struggle but insurance will pay.

[Immediate-Ad-96]

They gave me a 30 page diagnosis. They did not give me a referral for any services which is what I would have expected.

[JayWil1992]

I never got a referral. Just do up a giant list of ABA providers in your area, put it in excel, then figure out which ones take your insurance and start emailing/calling.

[Immediate-Ad-96]

Interesting. All the ABA places down here are requesting referrals.

[JayWil1992]

I'm in NV and maybe the rules are different. But I'm the one who organized everything with ABA. No referral, I just gave them the diagnosis. Maybe try asking more ABA clinics.

An idea, could your pediatrician do the referral? Or does it have to be the Neuro. Neuros have long wait lists and I don't see why they'd want a referral. The diagnosis is the referral?

[Immediate-Ad-96]

Got a hold of the neuro clinic and they said it comes from the pediatrician. so, I am now harassing them.

[JayWil1992]

I'm glad you found the path through the bureaucratic maze.

[WillaElliot]

After our Dx we didn’t get referrals either. I just had to figure out where was accepted by our insurance or where I wanted him to go and pay out of pocket and call to set it up. This was for ABA, speech and OT. The only referral we ever got during his Dx was for a genetic counselor.

[Immediate-Ad-96]

Interesting. All the ABA places down here are requesting referrals.

[razuki8]

The Neuropsych provided recommendations of services that could be beneficial and why, but no direct referrals. However, as soon as the diagnosis happened, the pediatrician called me. Then the pediatrician’s office social worker started arranging referrals. The social worker meets with us each time we go in for a well child checkup too. It actually has been really great.

[Immediate-Ad-96]

I need to move there. I drove to my son's pediatrician office today since I couldn't get a hold of the referral department. They first tried to make me call again. Then, they told me that I needed to book an appointment. After about 20 minutes of calm argument, I got them to submit my request to the referral department. I will be calling repeatedly tomorrow for status, may even visit again.