No Word From IBRF. Medicaid Perplexes Me.

As of this posting we still have not heard from the team at the IBRF. I’m beside myself with anxiety. I promise, I will post as quickly as I can — good or bad — after I know.

Now, onto my latest tirade. I’m a bit hesitant to bad mouth, especially after hearing from all the “mandated reporters” out there a while back :). Yet, my inability to keep my foot out of my mouth compels me.

Sue came across a Waiver offered by Medicaid that will actually pay me to care for Ryan. Granted, it’s not much but it’s (just barely) worth it to jump through hoops with this agency to put toward Ryan’s medical costs. I’d say the main drawback is Sue will technically be my boss! She’ll sign my time sheets and access my performance. You know, what she pretty much does already.

After verifying that there is a grievance system in place against my supervisor, I agreed to this. I’ll definitely be bucking for a promotion… time to brush up on all those annoying business catch phrases.

Really, I’m looking to expend 110% for a win-win situation, but I’ll need to think outside the box and hit the ground running. At the end of the day, I’ll pick the low hanging fruit while seamlessly integrating my A-game. Being the devil’s advocate, I’ll need to manage expectations while taking a proactive approach. If you have a problem with that, we can take it offline.

Okay, what was I saying?

Oh, yea. I was getting ready to tell about my irritation with Medicaid.

It seems my accounting of the day doesn’t quite make sense to Medicaid. For example, they want to know why I need to move Ryan for more than four hours a day. I know what your thinking. I thought the same thing. But,  the obvious answer of “because he’s in a coma and can’t move for himself” is simply not logical to them. I just wonder if they would appreciate not moving for over 20 hours a day. Granted, I constantly have Ryan in motion, at least 14 hours a day… but four hours seemingly is too much? What the heck?

Why, they wonder, does it require so much time to prepare, wash, fold, and put away laundry. I wonder, should I just send them their denial for disposable adult briefs/bed pads, then think better of it. Just bathing him creates 1-1/2 loads (one wash cloth to wet an area, another to wash him, 2 to rinse him off, and one to dry the area). A bowel movement will get you another 1/2 load easily. You have his bedding, equipment padding/protection, and clothing to add in too. It adds up quickly. Three to five loads a day takes some time…

Seriously, he can’t be the first person in the history of Medicaid to be treated in this condition. Can he?


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12 Responses to No Word From IBRF. Medicaid Perplexes Me.

  1. Nick says:

    I seen your story on the today show on NBC and have not been able to get you guys out of my mind since. I can’t tell you how highly I think of you Ken and am simply amazed at your ability to hold everything together every day while waiting on people that can be as inconsiderate as Medicaid and the IBRF. I have no way of being able to even fathom what you and your family are going through and I am not much of a god faring person bc of situations such as this but I will be thinking about your family and Ryan each day and hoping that he will be back to the old Ryan as soon as possible. Keep up the unbelievable work your doing, as I too believe that some of the methods your using are going to eventually pay off in some way! Keep your head up Ken I know Ryan couldn’t ask for a better father.

    • Jo Hobbs says:

      Nick, I think God brought you to this blog. I hope you will learn to trust him. You will read a lot here from folks like me who have an ever-deeping faith. God is blessing all of us. I am a Christian, and I will pray for you to meet Jesus and accept him as your saviour and friend somewhere along the way.

  2. Paula Yocom says:

    Good morning, Ken — I’m kind of at a loss for words about Medicaid, but then — am I surprised? Alas, no. So they’re asking for more justification? Oh dear. If getting you what your family rightfully deserves is going to take an act of Congress, then I will be happy to ask our local Congressman’s office for help. It’s very troubling that citizens are put through this kind of ridiculous, inappropriate hassle in order to get what is rightfully their’s. You deserve every penny coming to you, and that doesn’t even touch what you should really be getting for all the work you do. Don’t get me started. IBRF, where are you? We need your help for Ryan asap! We are counting on you, please don’t let us down!!! Kudos to Sue for finding that waiver, I can’t believe none of us thought of that. Seriously, if there are any problems getting this, let me know. Now I’m freaking out about how much laundry you do every day — darn — and I thought my laundry situation was out of control. You the man, Ken!!! p.s. I’m with you on the corporate speak, I loathe it, especially when someone says something like, “let’s leverage your down time to handle the laundry excess” or some b.s. like that.

  3. Elizabeth in Morgantown says:


    I am so sorry you have not heard back from them. I honestly don’t think they realize how much time it takes to care for Ryan. Keep us posted and I hope you hear from them soon! If for some reason they deny you, I would fight it. Ryan needs someone to fight for him.

  4. Jo Hobbs says:

    Sue, here’s your chance to crack the whip!! If you really want something to think about, Ken, the Fed. Gov. is super. to all of us. Your tax dollars at work! Would Medicaid possibly be interested in sending over a qualified observer for a day? !! Might get those much needed adult supplies! Ken I knew about this compensation, but the social worker assigned to your case somewhere along the line is supposed to keep you informed on these matters. Why didn’t they? That’s what they get paid to do: keep us informed.

  5. Gail Doyle says:

    Dear Ken. Why Medicare would question all you do ,is beyond me!!!Hope you can get things cleared up without too much aggravation.This you sure don,t need. Hoping you hear from IBRF very soon….Praying it’s GOOD news ….You all deserve a break and you will get it ..Hang in (as if you can do anything else) thinking of Ryan and SHSP. Peace . Gail

  6. Will says:

    You must have a case worker assigned to Ryan. The reason for the turning of Ryan is to prevent bed sore’s. You should have a Doctor’s order for this to present to Medicaid. You can get disposable adult diapers and medicated wipes but need a Doctor’s orders. I am a senior on Medicare with a Medicaid spend down. According to Medicaid you are offering services to your son as a home health aid—bathing, etc. Everything has to be in writing. My Mom lived in a Senior Apartment and needed Medicaid services and she had an Aid that came to her apartment twice a week for two hours to do things like cleaning the apartment, washing her clothing and supervising her bathing. The Aid would document what she did each time she came to Mom apartment. It is up to the case manager to make sure these things are done, She also had a LPN that came once a month for blood pressure etc.
    Keeping Ryan in my prayers along with the family.

  7. Jill in Morgantown says:

    Ok, I’m probably gonna get a lot of “thumbs down” for this one, but thinking about Medicaid…..They’re probably not used to anyone working!! They’re used to able-bodied people sitting back on their butts and collecting a paycheck. Now please, don’t get me wrong, not everyone that gets assistance is a lazy bum. In my humble opinion, Medicaid was created for situations such as this one. The Diviney family should get TONS of assistance. Ok, getting down off my soapbox….Ken, I’m praying that you hear something VERY soon from IBRF. Still here, still praying, and afraid to post this in Morgantown

    • Gail Doyle says:

      Jill. I totally agree with you ,Yes Many people need asst.,but if anyone ever did it,s Ryan and his family.Hope everything works out

    • Will says:

      Actually many people in New York State who are working also get Medicaid. Low end jobs and wages along with ski high rents and then include a sick child etc in the mix and a family can be soon broke financially. My cousin who had a concrete business came down with cancer of the lung at age 55 he came close to loosing almost everything he worked for in life to finally get Medicaid. I guess Florida along with many other States let a person just about die before accepting them into Medicaid. In Ryans case I hope he qualifies for all the care he can be given since technically he owns nothing.

  8. Keith says:

    You know I dont understand the system sometimes. I agree they shouldn’t even question you about it. And Amen to that Jill I agree 100% the ones that need assistance has trouble getting it and the other ones that really dont need it gets it. The system is so unfair. You know its like food stamps Ya let all the lazy ones have it so they can go out and exchange there food stamps for drugs. And i agree you do have some out there that needs it and some dont! URR Ken You guys i would say really deserve help from the system and I Hope and Pray that you get all the Help that You Need! And for Nick Just watch and see How God works in peoples lives and see that He is there with us at all times. Your in My Prayers Also! And let me tell you I am holding My Faith thats theres a Miracle gonna come out of this!

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