The Cost of Autism

In January we finally got to do Camille’s autism evaluation.

Now, I could go on and on about the inner workings of the four hour appointment, but that is not going to be the meat of this blog, so let’s just go with an overview.

We started the eval process in about July 2019. We had to go to their regular pediatrician for an appt and to get a referral. We went on the waitlist for the developmental clinic and finally got our appointment in the middle of January 2020. The day comes, and we get to the pediatric specialty clinic and we spent about an hour with each specialty. One hour with a developmental pediatrician, one hour with speech therapy, and a shared hour with both an occupational therapist AND a physical therapist at the same time. The time with all three specialists were pretty much all the same: mostly asking me questions and having me fill out scantron-style forms, watching Camille, and trying to get her to do certain tasks. I would say about 75% of each session was spent mostly just talking with me.

The evaluation is not even finished. We still have to get Camille evaluated by a behavioral therapist, who’s waitlist is six months long. WHY we were not put on their waitlist back when we got on the waitlist for the developmental clinic is BEYOND ME. Now, by the time we get in with the behavioral therapist, Camille’s autism evaluation will have taken one year to complete. Although I could write a whole blog about that and my annoyance with it, this isn’t the topic of the blog either.

This week, about 6ish weeks after Camille’s appointment, we got a statement from the evaluation appointment, along with the bill for the remaining balance. YA’LL….. The total for this *partial* autism evaluation was $1,846.48. 

Let me break the bill down for you:
Clinic (developmental pediatrician): $773.65 <—for ONE HOUR
Occupational Therapy evaluation: $305.61
Physical Therapy evaluation: $342.28
Speech Pathology evaluation: $424.94

Total: $1,846.48
Tricare Insurance covered 98% of the total costs
My remaining balance: $33

…Thank GOD for decent insurance! Who could afford that otherwise? I don’t know much about Autism coverage with insurances (outside of my own experience), but I did read once that a lot of states now are requiring major insurance companies to now cover some autism services, as it is becoming much more common (or should I say, more diagnosed/recognized). 

We have been very blessed with our Tricare coverage when it comes to autism services. When my son was two years old and diagnosed with autism spectrum disorder, we became eligible for a supplemental coverage within Tricare called the ECHO program. This program covers additional medical supplies, therapy tools, and specialty therapies that are not available with the general Tricare plans: you must have a medical diagnosis of some type to qualify for this program.

After seeing the cost of this evaluation (especially being in a rural location in Michigan vs an Urban city like San Diego) it got me thinking…what is the average cost of Autism in the U.S.? Are other people struggling like me? What if people don’t have good insurance like my family does?

*Disclaimer, this information came from about an hour of web searches, so I cannot confirm the validity of this data. If you have knowledge of more accurate data PLEASE let me know!*

The total cost of Autism Spectrum Disorder in the United States is $126 billion. The average cost for providing care to one person with ASD throughout their lifetime is $2.3 million (compared to $1.4 million for a healthy average functioning person). So what is this cost for? Obviously a bunch of different things that can vary for each individual person… that was a boring answer, so here are some of the main factors:

• Regular doctor appointments
• Specialty / developmental doctor appointments
• Speech therapy, occupational therapy, physical therapy
• Applied Behavior Analysis therapy
• Medication
• Childcare (some children with more difficulties can require specially trained childcare)
• Parent’s loss off income for taking time off for therapies, frequent appointments, IEP meetings, etc

It’s safe to say that life in general is just so much more expensive these days. Medical costs for EVERYONE are insane. We all know that pharmaceutical companies make so much money off their horribly overpriced medications, but don’t let that overshadow all the other overpriced medical treatments in the healthcare field. 

When we were in San Diego and my son started Applied Behavior Analysis therapy (ABA), we were blessed to never have to pay a cent for the service. I did however receive the monthly statements showing me the hours, costs, and confirmation of payment. All I can say is… HOT DAMN. It was around $5,000 a month for ABA therapy in San Diego. (Because we are in Michigan at the moment, I do not have the physical records with me to give you an exact cost of this therapy, but that amount of money is not easily forgotten.)

Eli had two separate therapists (rotated days) that came M-F 8am-12pm and a case manager that came maybe about once a month. One of his daily therapists told me that they didn’t need any certain degree for their job and only made around $12-$15 an hour (in southern California!) Meanwhile, the case manager that came once a month for an hour would drive up in a nice BMW… So why the insane costs??? What is all this money going to? The actual therapists who get screamed at, hit, kicked, and are the ones actually doing the work aren’t getting the money they deserve, so who is getting it? The supervisors who have never met my child?

I think it’s worth mentioning that more often than not, families with a child with some type of disability usually have one of the parents leaving the workforce to become a full time caregiver to the family member, thus leaving the entire family to rely on one income. This, if you’ve followed my blog or know me personally, is the case for my family. I have been a stay at home mom for pretty much 7 years. Between in-home speech therapy, in-home ABA therapy, 3 hour special education preschool days, in-office therapy sessions, I would either need to have a costly full time nanny that I trust to transport my kids around all day or we need to take the loss of an income. What is a solution for this?

 This blog isn’t going to end with my grand solution to this ridiculous high medical costs dilemma. Honestly, I don’t really have any solid ideas at all. Could the government step up and create a solution? Doubtful seeing as how far in debt we are already… What we need is someone or some powerful agency/group and get a control on overpriced healthcare costs. Insurance companies should cover more specialty services. There should be more free state and federal resources for families with disabilities. Until a solution comes to light, all we can do is spread awareness and bring more light to the struggles that SO MANY families are dealing with on a daily basis.

https://www.autismspeaks.org/press-release/new-research-finds-annual-cost-autism-has-more-tripled-126-billion-us-and-reached