A massive and important update on the current state of Gavin’s mental health care

Disclaimer: I’m venting/ranting about the current debacle that is Gavin’s mental healthcare. I’m really frustrated, angry and overwhelmed by all of this because there’s so much at stake. When you read this, keep in mind that I’m experiencing all these emotions and this is my way of sharing our story but also processing all this as well. 

I heard back from the nurse at Gavin’s psychiatrist’s office this afternoon and we had respectful but totally unproductive conversation.  
This was one of those conversations where I’m not sure if I’m more frustrated now than I was before but I think I am.  Yeah, I’m pretty sure I’m more frustrated now. 

After listening to what happened, this is what the nurse told me:

I wish I could tell you that things were going to get better but frankly, they’re only going to get worse.

Here’s the underlying problem. The root of all this, if you will.  
Our doctor was going to have to drop all his Medicaid patients as a result of the healthcare overhaul and changes made to Medicaid. I don’t think this was a choice they were making, it was being made for them, if that makes sense.  

In order to avoid this, he partnered with Community Services and can continue to see his Medicaid patients but only on Mondays.  
Everyone agrees it’s a stupid rule but there’s either a really good reason for it that we just don’t understand or the person who made the rule has no clue what they’re doing and how this impacts treatment/patient care. 

This means that all Medicaid patients have to be squeezed into Monday time slots, of which there aren’t enough and that’s a massive problem.  

That’s the long and short of it.  

As time goes on, we can look forward to this only getting worse and more unreliable. That’s straight from the nurses mouth. 

I explained that it wasn’t so much the wait that was the problem.  It’s that they’re not communicating at all with their patients.  There should be someone in the office to manage the people waiting, as long as there’s people waiting to be seen. 

People are going to have questions like is the doctor even here because we’ve been here for three hours and haven’t seen or heard from anyone, for example. 

Our other doctors will call to let us know that there’s going to be a wait and recommend that we arrive xxxxx minutes or hours later. 

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  • Zoe

    Quoting you
    “There are plenty of patients that don’t need to be seen by him personally because they aren’t complicated cases.”
    How dare you say that? You preach and preach about people from the outside judging your kids. You talk about how one of the worst things to say to an parent is ‘Well he doesn’t look autistic’ then you turn around and play doctor? Laughable! Rob, you were an EMT for a very very short time, that does not give you the insight to triage psychiatric patients.
    You need to step back and check your ego, it’s getting a tad out of hand.

    • OMG… Why don’t you just go away??

      First info is so flawed.. I was paramedic, not an EMT and it was for many, many years, not a short while.

      There’s no ego here at all.

      Elliott and Emmett are two perfect examples of kids that can see the nurse practitioner and don’t need to see the doctor. That’s why we usually do it that way.

      Please stop this nonsense. You are spewing incorrect information and you continue to troll my site… Nothing you say is of benefit to me or anyone else, with the exception of your alterego, Moe.

      For the record, I was some stating a fact that in most cases, this type of specialist isn’t needed. You don’t need this type of specialist to get Adderall or antidepressants.

      It’s the same principle as not going to the emergency room for a splinter.

      Please stop trolling.. I don’t care which username you decide to use, your purpose is never positive and I’ve been very patient..

      My next step is to simply ban your IP address

      • Zoe

        So ban me.
        And many many years is also flawed according to your own timeline.
        But EMT or Medic still doesn’t give you the right to judge and triage other patients. You don’t go into the appointment with them, you have no idea what happens behind that doctors closed door. You can only state it as a fact for your own kids.

        This is worse than when you said the teachers at your don’t understand special needs kids.

        And the only difference between an EMT and a medic is the ability to start an IV and administer drugs, it doesn’t give you a psychiatric degree. Unless there is some magical medic program in Ohio

        • Wish granted…..

          I’m not talking about specific patients. I’m speaking in general terms. Not all the kids that go through, need the same level of expertise.

          There is a big difference between a medic and an EMT that goes way beyond IV and drug administration. Every state is different.


    • dotdash

      Of course there should be triage. Cancer patients should be seen before ear infections. Are we really disputing that? And why so hostile? Aren’t we all in this world together? When people in your real life unburden themselves to you, do you immediately attack them? Please think about a new approach, I think it would benefit you as well as people you come into contact with.

      • Braden

        But should cancer patients always be seen before ear infections for all appointments? This was a appointment, not an emergency which would immediately remove any critical need. Seems like the issues were 1. lack of communication and 2. The fact that all five of them were waiting. Which is all just sucky things to deal with, but nothing that would require any sort of triage.

        It’s the system of only seeing Medicaid patients on one day…and that is a problem with the influx of Medicaid patients on doctors offices.

        • Braden

          **Additionally, I think Zoe said that Rob wasn’t qualified to triage the other patients..not that triage shouldn’t exist.

      • Kim Gebhardt

        Having had both cancer and ear infections, I would rather have my ear addressed first. My cancer didn’t hurt, but my ear infections were the work of demons. 🙂

  • Braden

    Yeah. I get that’s frustrating, but you are really taking a shitty position on this one. Your son isn’t more important than the other patients and the length of time you have been at the doctor will not matter. At all. Not even a tiny bit.

    I suggest you ask the office (and Doctor) how to best deal with the way things are and go from there…because respectful or not if you even hint at either of the two things above and you will most likely be dismissed.

    Either that or look into private insurance and avoid the hassle.

    • Take a step back and reread what I wrote. I was venting. Secondly, I never said he was more important, I said he was more complicated and in need of very specialized services.

      Many of the kids that do go through, don’t need the same level of specialized care. That’s not , that’s the protocol at the doctors office.

      The problem is that every person on Medicaid can only be seen on one day and so there’s no longer a triage because of the limited access now.

      The issue is that this impacts the patients who need the specialized care but can’t get it anymore because they now have to cram everyone into 4 days a month.

      That’s what I was saying. Does that make sense?

      Also when I start out a post by saying that I’m venting/ranting, that means I’m sharing my feelings in the moment and so it’s more of a reaction, rather than having time to think about everything and come up with the perfect things to say.

      • Braden

        I get venting….but that doesn’t mean you can’t be questioned on any of it. And whether or not you directly said ‘important’ you definitely implied that should get front of the line treatment. No reason to argue that point, it’s how I read it.
        With that said…..
        I’m sure all of the hassles are due to Medicaid red tape and the sheer number of people that can only go to a finite number of doctors that will accept it. Which is why the ‘help me navigate the system’ conversation would be much more productive.

        • I had that conversation with the nurse yesterday and her reply was that she wishes she could tell me it was going to get better but it’s only going to get worse.

          As for your first paragraph, I wasn’t saying in any way shape or form that was more important. I was saying that he needed highly specialized care, that not every kid there needs. That’s just a fact. It’s about people getting what they need, when they need it.

          Because of all the changes to healthcare, this doesn’t seem possible anymore.

          By the way, I do appreciate your approach with your comments. We can see things differently but the underlying respect is there. Thank you very much for that… ☺

  • “Disclaimer: I’m venting/ranting about the current debacle that is Gavin’s mental healthcare. I’m really frustrated, angry and overwhelmed by all of this because there’s so much at stake. When you read this, keep in mind that I’m experiencing all these emotions and this is my way of sharing our story but also processing all this as well.”

  • dotdash

    I think your idea of the office telling you the real time you will be seen is a great one. Sadly, the psychiatrist probably had to let his office staff go home for the night, so there was no one to do that kind of work. Kudos to that doc for staying, though. If he/she was 2 hours behind, it’s a cinch those were not extra paid hours, just more time spent on people who needed more help. It’s got to come out of someone’s hide when there is too much need and not enough hands on deck. Thank God that physicians still see their profession as a helping one.

    Hey, maybe you could write an app that would text the appointments on Monday to let them know how far behind things were. Even if there was no office staff, the physician could update the app every hour or so…Probably some HIPAA violation there. Okay, maybe they could tape a piece of paper to the front door.

    • Thanks dot. I don’t know about the app but a post it note on the door, would work just fine. Sometimes the simplest ideas are the best… ☺

      I hope you have a great day and thanks again for the email.

  • Kim Gebhardt

    I’m not going to lie, my first thought upon reading this post was “How dare he? He has free care for his children and he is going to bitch about how that care is doled out to him? How dare he complain about the hand that feeds him?!”

    But, I held off… waited for my morning caffeine to wear off and now I can hopefully offer respectful and productive discourse. 😉

    I have a feeling that the ACA is responsible for the office wanting to drop Medicaid. The billing for both is a nightmare. I know several of my doctors will not accept patients who have the ACA version of the same insurance I have because they don’t get paid as much or as efficiently, and Medicaid has a similar reputation. It is probably a situation of “we could handle one clusterfk of an insurance company, but not several so we’re cutting it off.” The fact that your doctor found a way to continue seeing Medicaid patients speaks volumes. He was unwilling to throw all of you away and he should be commended for that. The issue with the doctor now needing to see patients that were previously seen by a NP is also an insurance thing. My insurance wants me seen by a doctor, not an NP, and they won’t pay otherwise. I agree that the office should at the very least let patients know how long it might take to be seen, but I also understand that they can’t keep the staff there indefinitely. As Dot said, a note on the door would probably be a workable solution in the short term.

    As for not all patients being serious enough to be seen by the doctor, be part of the
    solution rather than part of the problem. should definitely stay with this man who has seen him through it all, but that doesn’t mean you can’t take the other boys to a different doctor
    since they are mostly going for med checks. That would be a small step in alleviating the overbooking problem, and it would help both you and the other patients. It would also cure the problem of having to take all the kids with you and having the E’s sitting in a waiting room for
    hours at a time. I really do feel sorry for the staff at these overworked offices. They are likely
    dealing with angry patients on a daily basis. I know that no matter how much I like my job, that is going to change quickly if I have people yelling at me or angry with me every time I pick up
    the phone.

    • It’s nice to see you Kim. The E’s see the nurse practitioner as I stated previously but they have to see the doctor on occasion as per their treatment plan.

      I have a really good relationship with everyone at the office and so we can have these conversations without there being any lasting damage or ill feelings. As for the free healthcare, I had really good private coverage but it wouldn’t touch anything the boys have. That’s why many families like mine have to move to Medicaid…..

      Nice to see you again and good points.. 🙂

      • Braden

        This is interesting…and moving the conversation in another direction…are you saying you think Medicaid is better than private insurance (in your case)? Cause I have to be honest, I can’t imagine the hoops that you have to go through with working within that system.

        • Braden

          I’m assuming it’s removing the copay, and not the coverage which is helpful, but I wanted to make sure I wasn’t reading it wrong.

        • Medicaid is absolutely better, without question. So many private insurance companies will not cover anything related at all.

          It’s not without its drawbacks but I suspect most parents would agree. has Medicaid because he’s on disability.

          Google things like Autism and insurance. It’s a nightmare. I think in some ways it’s getting better because states are forcing companies to cover Autism but it’s not everywhere and last I checked, it wasn’t in Ohio.

          Does that make sense?

          • Braden

            It makes sense, and I can only go by my insurance…and I have everything covered, it’s just at the cost of a copay. At this point, I would think most treatments are in fact covered. Especially with the move to ‘obamacare’ type coverage the past 8 years

            • Yup. Different states. Different diagnoses. Different policies. You may be one of the lucky ones….

              Autism and lack of insurance coverage has been a huge issue for a very long time.

      • Kim Gebhardt

        I didn’t mean to make it sound like you had given the office staff a hard time, I was just making comment that I think it can often be a thankless job when you’re in an office as busy as this doctor’s seems to be. To help solve part of the problem, would it be possible for you (and are you willing) to move the E’s to a different doctor? That would also keep you from having to pull them out of for early morning appointments; something that’s not an issue for .

        I’m confused about the insurance. I admittedly know little about coverage because it’s not something I have to worry about, but is Medicaid seriously better coverage than private insurance? Or it is a money thing? I can understand it being a much better choice cost-wise… from January of 2014 through today, I have put out just over $44,000 in copays, deductibles, and coinsurance, but my coverage is excellent and I can go to any doctor I want, specialists included. Knock on wood, there is nothing that I have had to fight for or do without because insurance denied me. Granted, I am aware that affording private insurance would be close to impossible for you, but I am curious whether it is the cost or coverage that is more attractive to the average person.

  • tannawings

    Not to defend the length of your wait (it was long) but we have a Dr quite similar. He is very very good and is always running late. One of the reasons, is that he listens to patients, he doesnt rush them in and out like cattle if there is a problem.
    He may start his day on time, but if he spends 10 extra minutes with each patient or more, really caring, by the end of the day, he can and has been almost 2 hours behind. But the patients wait…. because he is good and he cares. Each patient knows that if they need extra time it is given, some dont need that but some do.
    Hubby’s cancer Dr is very specialized, we drive an our and a half to see him, but we know he is the best we want the best, we want him to live.
    It sounds like your Dr is very specialized too, and limiting days for Medicaid likely just makes it worse.
    Pity they cant schedule visits differently, but perhaps seeing only although its a hassle would be the best course. He has all day and getting an early appointment will help. Have the E’s go in on a different day if it is only a med check.
    Best of luck.

    • Kim Gebhardt

      I have an oncologist who is similar. He is arguably one of the best in his field, and sometimes if you want the best you have to sit and wait. He has never made me feel as though I were unimportant or being rushed, and the first appointment I ever had with him was on an emergency basis and his office squeezed me in. It is rare that I am seen on schedule and I’m fine with that. I know it will happen and I prepare for it.

      • That’s a great attitude to have. It’s not the wait that is frustrating, it’s that we can wait and still never be seen. We don’t know if it’s going to end up like that until it happens.

        That’s happened many, many times. I’ve pulled the kids out of for an appointment and when we get there, there is no appointment. Even though I pull out the appointment card, proving we had an appointment.

        It’s always something. If I knew we would be seen, the wait just sucks but like you said, it’s worth it. When we wait for three hours and find out that our appointment got erased, that’s what fills me with lots of other emotions.

        Does that make sense?

        It’s not like theres any one person to blame, it’s a systematic problem of too many patients and not enough management, time slots or doctors…