Here I am again… begging for you to consider making a one-time or recurring donation to the Special Needs Trust Fund.
It’s humiliating.
We got hit with a double-whammy. First, our health insurance . For the third straight year three unfavorable things happened:
- We pay more,
- to get less coverage, and
- the deductibles and out-of-pocket maximums increased.
From what I hear, it is happening to many people. Because of our situation we are probably more in tune with what’s happening in relation to this. Here’s my conclusion, and I’m eager to debate anyone whose position is to the contrary: Healthcare was broken. It continues to fracture. It’s getting increasingly worse… at an alarming rate.
But wait… there’s more!
As Ryan’s primary caregiver I get an hourly rate from the government for a portion of the day. We also have the option to pay someone to do this, but no one can match my level of care. Then there’s the benefit of taking the small amount I earn and applying it to Ryan’s care and treatment. Now, I never sat down and did the math on it but it would not surprise me if it worked out to a stack of nickels an hour in what I consider real terms. Hey, I’m “on the job” twenty-four hours a day, but nobody in healthcare or government wants to recognize this. Then there’s Sue. Each day she leaves a highly demanding, full-time job to come home and work another highly demanding full-time job with Ryan. Her hourly rate to do this? Zero dollars and zero cents.
It is here that I’d like to apologize to all the other family caregivers out there. What is obvious (and unfair) to us is often not common public knowledge. The sad truth is, most won’t give too much of a hoot about it until it touches them personally. I was no different. So, please forgive me for getting your dander up. Did we learn nothing about equal pay for equal work from the women’s movement decades-upon-decades ago? If I had a bra, by damn, I’d be burning it right now! Disclaimer: I will not be held liable for burning any and all bras, of any cup size or clip system, that come before me. You accept this risk openly and freely, and further agree to not make this a hassle for me to obtain such from you.
But wait… there’s even more!
I just learned yesterday that this caregiver net payment was drastically reduced. Not the rate of pay, mind you, but the hours they will pay me for. Seriously? Am I just being silly that I believe a person in a comatose-like state needs attention around-the-clock. Yet, if I only worked the hours paid then I’d surely have Adult Protective Services coming after my ass because it doesn’t come close to the care needed. My problem is, no matter how I look at this, no one will believe me that my days are equal to more than twenty-four hours.
In theory this is a system that could (or maybe, did) work. It makes sense. Reduced the overall cost of healthcare by paying the family to take it on, or do the legwork to get this care. Unfortunately, it’s insanely more complicate convoluted. Here’s a typical, but fictitious, interaction.
Ring… ring….
Agency XYZ: Hello, Agency XYZ. How may we ruin your day?
Me: Well, there must be some mistake. It appears the respite care hours I was provided has been cut… to zero.
Agency XYZ: I’d be happy [giggle] to look into that. I’ll need to place you on hold to access your account.
Me: Wont you need my name or account number to…
Agency XYZ: Please hold.
[Elevator music comes on and plays for ten minutes]
Agency XYZ: Okay, I see where we can only pay licensed people for this. It seems you are not a certified saliva technician with a state license to brush teeth and use suction.
Me: What? Wait. I didn’t even tell you what I do.
[silence]Me: Would that be helpful?
Agency XYZ: No. At this point, since it was denied, you must file an appeal.
[Three months later, the denial of appeal arrives in the mail]
Ring… ring
Agency XYZ: Hello. Agency XYZ. How may we ruin your day?
Me: I received a letter that my appeal was denied. I’m not sure why.
Agency XYZ: For one, it appears you failed to include a doctor’s letter of necessity.
Me: That’s incorrect, I did. Won’t you need my name or account number to…
Agency XYZ: Please hold.
[Elevator music comes on and plays for ten minutes]
Agency XYZ: Okay. It appears you didn’t include your left testicle with the appeal and that was one reason for the denial.
Me: Did you say “testicle”?
Agency XYZ: No. I said left testicle.
Me: Well, by damned, you’re right! I see I have my left… actually, both… testicles right here. I hope I didn’t come across as too testee. That certainly explains it all. Sorry for bothering you.
Agency XYZ: Yes, just be certain to be more attentive the next time you bother us.
Okay, so you think I’m being overly simplistic here. I’m here to tell you I’m not. Sure, I’m presenting it in a humorous light, but there’s nothing funny about it when it’s you with a testicle (or boob, so I hear, for the fairer sex) at stake.
Save a testicle… please give.
And you should see the mess when you receive Social Security and have to figure out the many Part D drug plans so you can save a nickel. And it will get worse in 2014 with Obama Care or the Affordable Health Care Act. Just wait and see!
Ken, I’m so glad you can keep your sense of humor throughout this. Having dealt with quite a bit of red tape in my life (but NO WHERE NEAR what you have encountered) – I did tell one insurance outfit, “What do you want me to do, stand on my head and spit wooden nickels?” They give you the obligatory nervous chuckle/giggle and compose themselves enough to say, “but seriously, we need this, this, and this. And then when you provide same, they say….but you didn’t dot this “i” or cross this “t” so we have to start over from the beginning. Look, I’m not Julie Andrews and we can’t “start from the very beginning” again….. Anyway, keep your chin up, and I’ll keep up both of mine!
Love,
carla
I saw a great bumper sticker before the election…” If you think Health Care is expensive now, just wait till Obamacare goes into law and its FREE. ” How true! Everytime I go to pickup a prescription I am asked if I have a prescription card, I always answer, NO! I have a JOB… I pay cash for my prescriptions! Our family of 4 pays $1500 a month out of pocket for health insurance. How lucky are we that we are healthy, think of what it would be if we were not. Your depiction of the exchange with the insurance company is so true! Lucky for the folks getting the “free” healthcare, they don’t have to be subjected to this treatment to get treatment.
Hey, I can complain and vent, I put my money where my mouth is…I just made a donation to Ryan.
Obviously, I am not good at typing on that tiny cell phone keyboard. :/ But you had us both laughing yesterday! You know, I think that might be next — or a pint of blood! Just try to get through to Medicare or Social Security! And when we call our physicians ofc, we go through 10 steps with a recording, punching buttons all the while, get put on hold and then disconnected! A friend went to the SS ofc on Thur. and the wait was 180 mins!! I don’t think any of us have seen anything yet! :'(
I used every single hour, every month! I still don’t understand why this was denied. I filed an appeal, like I always do.
That really makes no sense!! I am with you, I dont understand. Who is your facilitator? Maybe call them and see if they can figure this out. Courtney was put on the EDCD waiver back in Oct and we have been waiting for Kepro to approve her hours since then. I am trying to work it out so I can use her respite hours to train the people we have hired. To keep me sane, I need to work and get out of the house. Plus with one child in college and another one in high school, the income helps. Anyways, I am sure you know just as much as I do but I would be happy to share anything I have learned about this waiver. Which is it doesn’t cover squat!! You have my email if you would like.
Have the facilitator on it! But, like everything, it always us who does the work in protecting our interests.
Right there with you Ken, I have been waiting since Oct to get Courtney’s hours APPROVED. And yep I did have someone tell me that if you dont use at least one hour of your respite care a month you lose them. Oh and had someone tell me at social services that Courtney does not NEED nursing. Someone that is in minimally conscious state! Who cant eat or tell you if something is wrong. All she needs is a personal care aide according to the state. Which is not qualified to adminster her meds or tube feeds.Not to mention her therapies we do with her on a daily basis. Can I just tell you that there are poorer states in the US than VA and they have a TBI/SCI waiver. Something needs to be done here and with more cuts looming where does that leave our children? Sorry your post just got me MAD all over again about what they do to our loved ones. Can I just let everyone know how hard it is to humble yourself and ask for help? Well it stinks…and that is the nice term for it. Sending love and prayers your way, Becky and Courtney
Hello Ken, I am praying that many of those who come to read your blog will respond in your time of need. I truly think that unless someone has been in a similar position, it’s very difficult to understand how all consuming it is — physically, emotionally and also financially. As you said, it’s all day, every day and it takes a toll. Of course Ryan is worth every sacrifice as he is an innocent victim who did not deserve the horror inflicted upon him. Your whole family has been victimized.
I pray we can all pull together and offer your family help anyway we can. Ryan is depending on all of us to help him; this is not something any family could or should do alone. The love and caring that has been shown to Ryan by friends and strangers alike is something I will always marvel at. I have met so many wonderful, compassionate people through Team Diviney. It has helped me to see the very best in people, and to know that when trouble comes, there are those who will lend a hand. Thank God for that.
Sending you love, hugs and prayers from my heart that your plea for financial help will be quickly answered. Paula
Ken ,Couldn’t help but laugh , yet felt like crying at same time
Something has to be done with these services ,You have more knowledge
and expertise to care for Ryan, then any “qualified” person and you deserve
24/7 help in all ways
Hoping you all have a good day
Love Gail
Feeling your frustration with one of many broken systems these days, and praying that more of Ryan’s followers decide to support you in any practical, tangible way they can. Putting your own dwindling money where your mouth is isn’t easy, but it’s one of the most worthy investments you can make in life. “For where your treasure is, there your heart will be also.” (Matthew 6:21)
So glad i am not driving for I would surely wreck Stew’swith sexy Enclave! How the heck do you come up with this stuff. Sending donation with love and prayers.
Done…
<3
You are a beautiful human, Ken. Thanks for your special brand of humor. I just loved the “Hello, how may we ruin your day” line. Beautious…..BTW, our next fundraiser for Ryan is being cooked up now. More to follow soon. 🙂