Dear United States Healthcare System,
We need to have a chat.
My name is Jason and I’m a parent of children with special needs.
My kids are doing fantastic, but sometimes they also require a level of care above and beyond what we are able to provide on our own in order to be successful in life.
We are really trying here. We are.
But do you know how hard it is for families like mine to navigate through our current healthcare system to provide the care our children need?
Do you know how much we have to fight for a diagnosis? For services? For insurance coverage?
Do you know how many waiting lists we are on? DO YOU KNOW HOW LONG THOSE LISTS ARE?
I’ve received calls for services that I requested so long ago, I don’t even remember signing up for them.
A local children’s hospital recently called me. They said they just had an opening for Jonah (8 years old) to be evaluated for autism.
EVALUATED!
Jonah received his diagnosis in 2016, from a separate company.
Apparently this particular waiting list was SIX YEARS LONG.
Six years!
But to put things into perspective, let me walk you through a glimpse of what we go through behind the scenes of the “every day” therapy appointment.
Last Monday, Jonah was due to have a speech therapy appointment at a local facility, but I had to rebook it.
It wasn’t due to a conflict of schedules. Nobody was sick. There wasn’t an availability issue with the therapist.
The Speech Therapy Center (our service provider) said that our insurance was denying our coverage.
It didn’t make any sense because Jonah has had SEVERAL speech therapy appointments and they were ALL covered.
So I called our service provider about four hours before Jonah’s appointment to square things away.
They said they weren’t sure what changed, but their computer said insurance had denied coverage for this appointment.
So I called up our insurance. They pulled our policy and said, “Why yes, speech therapy IS covered for Jonah.”
So I asked them why it said we were denied. They said, “We don’t know. There is no claim or reference number we can check for this appointment to see why your coverage shows up as ‘denied.’ It is a ‘pre-authorization’ issue.”
They said I would need to call the pre-authorization department of our service provider.
I didn’t have their number so I dialed the “billing” department. The gal at billing also didn’t know why our coverage would show as denied seeing as our last appointment was covered. She then went on to say that speech therapy doesn’t even need authorization but she couldn’t do anything about it because she wasn’t in the office at the time. She did have a call reference number from April when we had this EXACT SAME PROBLEM with notes on how it was resolved between insurance and pre-auth.
So I called our insurance company again with the call reference number as to how this issue was resolved last time.
They put me on hold and called up pre-auth who apparently told them that the issue was with a possible repeat service. They said they would resolve the issue but it could take anywhere from 25 to 40 DAYS.
Jonah’s appointment was now in like an hour.
🤬🤷♂️🤯
I knew that was absolutely FALSE. The notes in the call reference number specifically said it was a diagnostic coding error.
At this point, with how many times I had been put on hold and waited to speak with people, I had spent nearly 3 hours on the phone trying to get everything squared away.
So I called up our provider and asked what else we could do. They said if we didn’t have proof of insurance coverage, we would have to sign a financial waiver stating that if our insurance coverage was denied (as it currently was), we would agree to foot the ENTIRE BILL.
I was disinclined to sign it because it would be nearly impossible to recoup our expenses if we were denied coverage for “whatever reason,” even mistakenly, and it would also set a precedent of coverage-denial for all future appointments.
The only other option was to reschedule the appointment in the hopes that we could figure it out before then.
Coincidentally, the therapist had a cancellation at 8am on Thursday (3 days later).
So, I ended up having to reschedule his appointment because they couldn’t figure out this insurance “hiccup.”
“Frustrated” was an understatement. I was livid.
I wish this was the worst part of the story.
It wasn’t. Not by a long shot.
By Wednesday morning, after the 3+ hours on the phone, I had figured out that the pre-auth department just needed to input the correct diagnostic code and I had even jumped through the hoops to figure out what code they should be using for an autism diagnosis.
So about 9:30 am on Wednesday, I called our service provider to see if anything had changed since the previous Monday debacle and to confirm Jonah’s speech therapy appointment for 8am the next morning. Nothing had changed (of course).
So they transferred me to pre-auth.
I was put on hold…
An hour passed.
I texted my wife to see what she thought I should do.
She said she didn’t know but not to hang up because I would move to the back of the line.
So I kept waiting.
Another hour passed. Now I had been on hold for two hours.
I couldn’t just stay on hold all day.
So I borrowed Jonny’s (14 years old) phone and began desperately calling other “healthcare” people, while still on hold for pre-auth.
I called our service provider. I called billing. I called our insurance company for a FOURTH time. I asked our insurance company if THEY could possibly call pre-auth with the proper code.
They told me they couldn’t assign diagnostic codes to service providers and if they did get ahold of them, I would need to facilitate the phone call… or pre-auth could contact them directly.
So do you know what I did? I talked the insurance agent into putting in a 3-way call to pre-auth (with me still on the line).
We were put on hold. 🙄
So now, I was on hold with pre-auth going on two and a half hours on my phone, and NOW put on hold AGAIN with pre-auth in a three way call between them and our insurance agency on my son’s phone.
Do you know how awesome it feels to be on hold for the same reason on two separate phones? Or how awkward it feels to also have an insurance agent just silently “chilling” with you rocking out to the “on-hold music” on the other end of a 3-way call on your 14-year-old son’s phone?
SO AWESOME. 😒
But we did it.
Until 12:17pm.
Then, the line started ringing.
On MY phone.
It seemed as if the call was finally going through. I briefly got super excited until and automated voice came over the phone and informed me that “something went wrong” before promptly disconnecting me.
TWO HOURS AND FORTY-SEVEN MINUTES LATER!
I was so frustrated, I hung up with everyone.
But again, that wasn’t the worst part.
Both the boys were hangry. I was hangry. So I called Mama up at her job in the ICU and told her I just “couldn’t” with it all for a while.
She offered to call them from her work.
So she tried to get through. She didn’t get much farther than me.
About an hour later, I heard Jonny getting upset in his room.
Usually, that means a problem with Jonah.
Jonny had seen how frustrated I had gotten and had asked if there was anything he could do to help. I told him it would be a big help if he could keep Jonah entertained and Jonny (like a good big brother), let Jonah play in his room. He knew that Jonah would scream at me if he saw me talking on the phone.
But that had been early this morning.
Watching Jonah really wasn’t Jonny’s responsibility.
So after lunch, I took Jonah to the beach. At least there, Jonah would be happy and wouldn’t care if I was on the phone because he would be occupied.
So I called up pre-auth again as soon as we got settled at the beach.
And to my surprise, after a brief hold, someone picked up!
It took nearly five minutes just for me to relay our situation when this gal informed me that she was pre-auth…
But for surgery, not for pediatrics…
…and she couldn’t help me. 🤬🤯
She started to say she was going to transfer me to someone else when I told her that I had just been on hold for two hours and forty-seven minutes with this department before the line disconnected and I really needed somebody to help me.
She said she would do what she could. I could tell she felt bad because she didn’t put me back on hold, and started trying to contact people on her personal line, even sending text messages out to people who were in meetings.
Seriously. She went full “Karen,” cussing out peoples half-assed responses and asking to speak with their supervisors.
But ultimately, after all that, the people I needed to talk to were “all in meetings.”
By this time it was now 3:30pm and who knew if they would be done before the end of the day. She apologized profusely and at least got me a number from a supervisor that might help.
I asked her if it was a direct line to someone or a general line, and she confessed that she didn’t actually know whose line it was. 😭
So I tried it. It was the “outpatient general rehab and therapy line.”
I gave them my now memorized 5-minute standard intro and spiel and they gave me the “now-standard” response of “you’ve got the wrong department.”
They said I would need to contact the “pediatric behavioral health services…” (our service provider)
Which is the department I had called that morning to start all this off, nearly SEVEN HOURS earlier.
So after all that we had come full circle.
I hung up and called the pre-auth line again hoping to maybe get lucky and get through to “someone” and even stayed on hold another hour for good measure before hanging up.
I felt so defeated. I had been at it all day gotten NOWHERE.
But again, this isn’t the worst part.
So I called our service provider at 5pm and cancelled our 8am appointment.
The SECOND time I had to cancel it. 🤬
After nearly ELEVEN hours of playing “not my problem, not my department” with nearly a dozen people working in healthcare and insurance, Jonah’s diagnosis code is still listed incorrectly and shows we are still “not covered” by insurance for this SINGLE FORTY-FIVE MINUTE APPOINTMENT, which I have now rescheduled again, for Monday morning (thanks to ANOTHER cancellation).
And I have to do this whole song and dance again Friday to make sure we are covered.
ALL THIS FOR ONE APPOINTMENT!
But again, that’s not the worst part.
Do you want to know the worst part about all of this?
This is a one-off appointment, we were able to snag with the speech therapist thanks in part to a cancellation.
There is so much need for speech therapy and so few providers, we can’t get appointments on a regular basis. We have to make our speech therapy sessions for “whenever they have availability,” at any time of day, and with one of six different SLP’s.
So one session could be a Monday at 8am with Susan, and the next one could be a Thursday at 4pm with Frank. There is hardly any way to build rapport with this model. But it’s the best we can do.
Ideally, they want Jonah to have speech therapy every week.
Our next scheduled speech therapy appointment is October 28.
Three months away.
So I am bending over backwards spending (what will probably be) over TWELVE hours sitting on hold and playing “not my problem, not my department” with our healthcare providers and insurance for a SINGLE solitary 45-minute appointment that will probably amount to a couple rapport-building games and some “atta-boys” and high-fives that are basically all for nothing because honestly, Jonah will probably not see this therapist again the rest of the year, and will have to do it all over again with a completely different therapist in three months, at his next appointment.
So why do I even bother?
Because I am DESPERATE for my child to receive any help he can get. And I will BEG for even the proverbial crumbs of provided services left behind if that’s what it takes.
I will give my child the BEST I have to offer.
And if this is the best we can do, then I will fight for it.
I’ll fight for the crumbs.
But if these “crumbs” I’m spending hours on the phone to secure are the best we can do for my son…
If “THIS” is the best we can do for our children…
If THIS SYSTEM, is the best we have to offer…
…then United States Healthcare System…
…we need to do better.
Thank you for your time.
Cordially and Respectfully,
Jason, A Special Needs Parent