Is evaluation supposed to cost so much

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We're in California, USA. We have a 4 year old son whom we'd long acknowledged has visible speech delays.

This past week I began objectively writing down a list of the behaviors that I've observed my son do, many repetitive behaviors, echolalia... and my spouse and I are coming to the realization that he may be on the autism spectrum.

Since our son is in a special ed preschool and has an IEP with a primary diagnosis of speech and language delay, we want to get an independent assessment to see whether our child is on the autism spectrum. I felt like we've possibly wasted a year in denial when we could have been getting our child the help and intervention he truly needs.

We had just paid $525 for an independent speech and language pathology assessment and started paying out of pocket for private speech therapy for our son; the school's "twice weekly group speech of 30 minutes" was not sufficient to create progress and we plan to visit the speech issue for the upcoming IEP.

We were referred to a well known psychologist who retired from UCLA. When I inquired her office, I learned that she charges $2500 for a 3 hour session to do the evaluation. I was shocked!

I read on a parent advocacy site that universities often offer affordable assessments, so I went to the UCLA website to look at prices.

I was shocked: it costs $4400!

(granted, it was 2-half day sessions so total of 8 hours and you're assessed by a multidisciplinary team consisting of a PhD psychologist, MD psychiatrist, and speech & language pathologist)

I'm hoping other parents can let me know whether a "good, objective evaluation" costs thousands of dollars. I know we live in California and it's expensive, but how do most people afford this when an assessment is about the size of a mortgage payment (or two!)?

At this point we're going to ask our HMO pediatrician for a referral, which means the insurance may cover, but my concern is that "you get what you pay for" and the referral may not be "as good" as pinning down the correct diagnosis.

Thank you for your thoughts and advice!

It costs what it costs. I also live in Cali, and I was surprised at the cost as well, but I went ahead with it anyway.

Try the Psych department at CSULB. They seem to be a little more sympathetic.

I spent about $300 on an IQ test performed by a private psychologist. This was significantly discounted and a 6 hour test broken up into several sessions.

I also paid out of pocket $1200 for the assessment by the neuropsych team. The insurance covered about $2000, so the total cost was over $3000. It was, can't remember exactly, around 12 + hours of testing plus the 1 hour consult in the beginning and end.

Was it worth it? Heck yes.

If I calculated how much money I have spent out of pocket from start of search for dx to now on testing, counceling and therapy, it is about $15,000 not including medications and supplements. This is in the past 3 years with BCBS PPO insurance.

It's ridiculous. But...if you find what works, you just can't put a price tag on it. It's a huge financial strain though.

Those costs sound in line to me - but don't discount your insurance. We made the mistake of ignoring ours and paying out-of-pocket...and realized that the place our insurance recommended was the place we should have started.

I'd say, start with what they'll pay for, and then try moving on if you don't get answers that make sense. Make sure that whoever it is specializes in child development and hopefully the practice says something about treating autism.

The other thing I've learned is that, despite all their efforts, schools are generalists and not specialists and therefore not necessarily the best diagnosticians. I think your instinct to get an outside evaluation is a good one; make sure they will offer you specifics on what your child will need that you can take with you back to the school.

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).

ULCA is supposed to have a super great program....probably worth the money!

It is super expensive.

I was diagnosed with Aspergers Syndrome at age 40 it only cost me 10% of the test costs thanks to my insurance so I ended up paying $150.00.

The pricing sounds in line with what we paid for a similar series of tests and diagnosis. Be prepared - it is a *long* process and while we opted to do a full day and complete the tests, if there had been any way to break it up, we should have. For a child that young (our DD was 4 when we had the testing done), it's important that they have lots of breaks for food and play. The intake and check-out portion just seem to go on forever too.

Insurance has helped us tremendously along the journey (our DD is 9 now), but therapies are very expensive and sometimes the best clinicians are out of network or only some of the therapy is partially reimbursed. That being said, I wouldn't have traded our experiences with the clinicians we had at all - well, except for the first diagnosis, where the clinician was very cold (he did however, get us an "early in" with the clinic that made the full diagnosis). Armed with your clinical report, you will find that it is a good tool for other therapists and well worth the money.

If you find someone you and your child like, make sure to ask for *their* recommendations for other therapists. There are so many "personalities" with clinicians and therapists, you could spend weeks with someone whose philosophy you don't agree with or whom your child doesn't like. We had a great speech therapist, who recommended our occupational therapist, who then recommended our behaviorist and subsequently a neuropsychologist. Trusting the person working with your child is a huge relief and will save so much time for your family.

The other thing I recommend is following the "age recommendations" for each therapy. Speech and OT was introduced fairly early with our DD (and at 4 she was already "behind" by some standards - although she had had Early Intervention). But it was recommended we wait for a neuropsychological profile (to be done when she was 7 or and our neuropsychologist recommended we don't start cognitive behavior therapy until our DD was 9. Developmentally, there are some therapies which will have a bigger impact when started a little later - and you don't want to bombard your kid with all these things. It's possible your child may not need some or any of that particular therapy!

And Janissy is right - the 529 can be used to fund things like trade school, culinary school, art school as well as college. Don't withdraw from his 529 yet - you don't know his academic future and with what you will be investing in him and how you believe in him, you may need that 529 for university ! I would suggest speaking with a financial advisor and considering exactly how much you fund - once it's in, 529 funding can *only* be used for education. For both of our kids (our son isn't on the spectrum) we have the 529 funded for 4 years of public school but those same funds only are paying for about two years of private...the rest (if they do decide that private is the route they want to take) will be funded by other means (and hopefully with funds from a job or two under their belt!).

Consider driving down to San Diego. At Rady's Developmental Evaluation Clinic (Rady's is our children's hospital) the cost was around $1800 for a 3-4 hour evaluation, which included an IQ test and the ADOS -- and they accept insurance. Our insurance covered 60%, so we paid about $750. The only downside is that it takes about 3-4 months to get an appt. Prior to the appointment, I also asked for my son to be evaluated for ADHD, and they sent me rating scales to be filled out by myself and DS's preschool teacher. I also know of someone in private practice who used to work there and can get you her name if you want a shorter wait. (Our ped originally referred us to her, but she doesn't take insurance, and I balked at paying so much out of pocket.)

^Re. the appointments and getting them sooner, don't forget to ask to be put on a waiting list for evaluations. Some schedulers don't automatically mention their waiting list.

It seems like a no-brainer, but many times, families put their names on lists and then change their minds or have found other means to have the evaluation done but just forget to call and cancel their appointment. We were able to have our eval date pushed up (by 2 months!) because a family canceled.

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.