ABA Frustrations

Today I am frustrated with ABA. More so I’m frustrated with how the services are just a business anymore. Let me explain how applied behavior analysis autism is becoming more of a profit-driven business model with our kids and families getting the shaft.

Applied Behavior Analysis Autism

Applied Behavior Analysis Autism Therapy Manual
ABA Manual for Parents

As many autism parents know ABA (applied behavior analysis for autism) is the staple, generic go-to therapy service recommended to you when you get a diagnosis. Depending on your child’s conditions you may also be referred to speech therapy, physical therapy, occupational therapy, music therapy, horse therapy and the list goes on and on and on. 

Let me say that I am a huge advocate for ABA, especially for in-home ABA services where the therapists come to your home and perform applied behavior analysis for your child on a regular basis. What my main frustration is, where it is becoming disheartening is that more and more the level of care and professionalism is dwindling. In fact it’s more of a double-standard.

We’ve had the Panzon in ABA for almost two years now and are very fortunate to have it in-home. I know that not everyone is as lucky but it was not just handed to us-, we fought hard to make this happen.

6 days a week for 18-21 hours he receives ABA in our make-shift classroom downstairs. 6 Days a week there is a variety of people coming to our home in the morning and after school for him. All are supposed to start at specific times and never do. This is where my frustrations come in.

Professionalism: ABA Shortage

We’ve got a pretty good relationship with our therapists and BCBA. We never cancel (unless he is sick), are always here and accommodating to any need they have (why would we not participate in his success right?). We allow them to have shadow therapists to train, we allow them to do last minute cancellations for sickness, school or whatever reason like traffic too. Most days we can expect a few minutes late. Many days it can be 5-10 minutes late or more. Yes we may get the “text message” but they are still religiously late.

ABA Programs FAQ'sWhat are we supposed to say, “get here or else” or “no you’d better make those 8 minutes up – we get charged for them!” No, we bite our tongue because do you know how hard it would be to get another service? Let me get back to that. 

Do you think they make up the time? Yes, sometimes if it’s longer or they cancel. They will always want to add on an hour to another session(s) or make-up another day, even Sundays have been used. But those 5-15 minutes that are religious? Nope, they simply fall into a bucket of paid time we never see.

Yesterday we had to take Panzon to get blood drawn in the AM for some tests to go out. That in itself can test the limits for the day. But we had it all planned because it’s Team Meeting day and for the first 1-1/2 hours the therapy team meets and goes over progress, challenges, etc. So the lab lost the scrip, had to wait to get a new fax over (seriously, why is a fax the staple of a medical procedure?) and that took us a little longer than expected. Therapist text messages me asking if we are still going to do the session after for 1 hour and I respond with the challenge, should be 10-15 min late and if it’s longer then cancel, I’m sorry out of our hands.

Her response in text: “OK unfortunately we will have to still charge for the session since there was not a 24 hour cancellation notice for the therapists hour with your son.”

My response in text: :”Whatever.”  

So they left and he didn’t have a session. But they sure did charge me.

I’m tired of the double standard and the tit-for-tat billing that never misses a beat. Getting back to before now they never seem to match-up or take into consideration the times they are late, or discount billing either. Why?

ABA Dilemma

Medicaid Benefits
Medicaid Autism Benefits

We are in the process exploring other services from other providers. The Panzon is officially disabled in our state and is signed up for Medicaid as a second provider. We like this since our primary insurance provider caps our coverage for Applied Behavior Analysis Autism at $55k a year. We have a $8k out of pocket and another $4k for out of network. So Our current ABA provider does not accept Medicaid but only bills us what our insurance won’t cover after all co-pays are met. $60 a session. Yes, after we pay $12k out of pocket we pay another $480 a week or $1,920 a month out of pocket, and my family insurance costs $1,400/month. It’s fucking insane.

So being on Medicaid there are providers that can work within the Medicaid billing system approved by the state. Here is the funny thing, we applied and went through all the hoopla last May, and had to do two separate assessments by two providers to be approved. We had to have home visits by case workers and finally were assigned a therapist and approved for 15 hours a week. Again this was only after two duplicate assessments by two different providers. The first one found out they didn’t have a therapist available for us. The system is totally broken and fragmented. 

First therapist on the first day is supposed to be here at 5, nothing. Get a call from my office about a strange call that came in requesting me and when asked who they were the therapist said “it’s a personal matter who is this? Is this his wife or sumtin?” Yes, there was a stereotype to a “t” accent and anger in the response.

Wifi Camera
ABA WiFi Camera

So obviously I called her and told her no, not to come. I also got a nice stereotype to a “t” accent and anger in the response. Scratch it, now wait another week to get another therapist. Provider apologized up and down, tried to make good. Accidents happen I get it. But don’t hire a person with a full-time job to moonlight in ABA that works an hour from my home and shedule them to show up at 5 PM during rush hour. Doesn’t anyone except me consider these things?

This new one shows up with the BCBA and while super nice was more concerned about how we would be working with her personal schedule than wanting to know about current course of action with the Panzon.  We concluded and agreed on a start day- today.

The wife and I looked at one another and after repeated each other’s thoughts. We both shook our heads, knew that state-based support would be even worse, and we’ll need to walk this like thin ice.

This new provider, a contractor through the state has even lower standards and appears we are getting the rejects of the private-based ABA world. They must pay for shit, and this is very sad and unfortunate. Applied Behavior Analysis Autism companies are in business to make money- I get it but, please don’t leave the main reason why this is being offered: to help kids with autism.

The new therapist starts today at 5. This is supplemental and could be short lived. Thank god we have live video cameras in his ABA room to listen in. Wish us luck.

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