Wednesday, March 22, 2017

What little influence this blog has, I now lay at the feet of a mom in Ohio

Not long ago, I took a little side trip to kvetch about Meryl Streep's faux-humble acceptance speech. It irked me because it was a failed opportunity to build a real bridge between liberal and conservative America. I found this irritating because I grew up with, work with, and still maintain friendships with a lot of the Christian people who voted for Trump. The big secret about these people is that they aren't all hypocrites. I disagree with them profoundly about abortion and a million other things, but I also deeply respect that so many of them are willing to adopt or otherwise provide love and support to children in the world. They believe every child is born in the image of God, and they live it.

I learned today about the struggles of one of these people. I don't know if she voted for Trump. She's the kind of person who might have. It doesn't matter. She might have voted with Trump over the "A" issue, but she's now very much against one big piece of legislation Trump is threatening members of Congress to get behind: The AHCA. I have her permission to share her story on my blog. I've heard a lot of "human interest" angle stories on the news the last few weeks. Hers is one of the hardest to hear.

These are Trump's people: Bible-believing, military family, hard-working. If anyone thinks these are the people being helped by the AHCA, you're wrong. The AHCA will make all those people that most of us like not to think about extremely palpable. Here's what she wrote on her Facebook page. There are small typos, but I'm keeping it as it is. This is a sweet family with pure hearts who adopted a girl a few years ago, then found out her problems were profound. Here's her story, which is more important than any fictional one I can dream up:

It’s time to share an update about Kiley. I had no desire to share this on FB, but I have no choice now. So please read and take it for what it is. No judgement is needed. The only thing we need right now is PRAYER and for you all to take 30 seconds to tell congress to vote NO tomorrow on the American Health Care Act…and here is more of Kiley’s story to help you understand why this is so important….

I never wanted to share Kiley’s story with the world, but back in 2014 a friend of mine gave me the courage to do so, so I did. How are we supposed to stop the stigma of mental illness if we hide behind it? I wanted everyone to believe our life was just perfect and that Kiley was this perfect little Guatemalan princess that we fought so hard for 3 years to get home! I didn’t want to hear the negatives “you should have walked away like we said…”, or “you should have taken it as a sign not to bring her home when it took that long to get her here!” Yes, these were said to me. Anyway, so I hid behind these walls not telling anyone that Kiley was hospitalized for months and months at a time, that her first suicide attempt was at 8 years old, that she has voices in her head that control her and she cannot get them to go away (and medication is touch and go), that she has bipolar disorder, and I especially didn’t want the world to know that she has Reactive Attachment Disorder (RAD) – and if you don’t know what that is … look it up! You will understand why I didn’t want to share with the world that my daughter was mentally ill…..and on top of that she struggled to attach to us – not because she didn’t want to but because the beginning of her life when her birth mom abandoned her and left her to die – chose the fate of the rest of her life. But in May 2014 I decided to tear down those walls and share Kiley’s story with our family and friends.

So here Kiley’s story continues: To catch you up, The Hope House was supposed to keep Kiley until she was 18 years old, that changed when the State of Idaho made the Hope House discharge Kiley due to her violence and that they could no longer keep their staff or other children there safe from her. So that was rough because the Hope House wasn’t an insurance battle. It was out of pocket and we didn’t have to worry about Tricare not paying. Tricare did pay for her medication and doctor visits but that is it. Because Dave is active duty military and Kiley is his dependent, BY FEDERAL LAW – Kiley must carry Tricare and she has 100% full coverage insurance. HOWEVER – TRICARE – WILL NOT PAY FOR KILEY BECAUSE SHE HAS REACTIVE ATTACHMENT DISORDER! They refuse and we have battled them, appealed over and over and over and over and over again! Each region has denied! They WILL NOT pay for her treatment other than ACUTE hospitalizations which are 3-5 days long (they must pay for those, they don’t have a choice) but anything longer, they don’t pay and Kiley doesn’t get the help she needs.

So what does this mean for Kiley and our family: Because TRICARE INSURANCE has refused to pay for Kiley’s treatment and she NEEDS treatment – Kiley had to go into “temporary” custody of children services. They are very much on our side (now, but not at first…it was rough), they are helping Kiley and the rest of our family. They are cooperative and helpful and we are still VERY much involved in her care! This is all solely for the protection of Kiley from herself, to protect Gabby and Elijah, and to get Kiley the treatment she needs now and in the future. This is so Kiley could receive benefits outside of Tricare and which allows her to get the help she needs. This is all court ordered here in the state of Ohio. The sad thing is that this could have all been avoided had her insurance covered her like they should! Now Kiley is eligible for Medicaid which will help with services as well. Let me explain one more thing to leave out any confusion – Kiley could (and has – in Oklahoma) carry Medicaid as a secondary insurance. The problem is: when Tricare denies her treatment, Medicaid CANNOT BY LAW pick up and cover, they can only cover costs once Tricare’s benefits run out. Example: She was in a hospital for 180 days and Tricare only covers 180 consecutive days so that is when Medicaid can pick up so treatment can continue. The problem with Kiley’s situation is that Tricare DENIES first so Medicaid cannot pick up. I just wanted to clarify for anyone who was wondering about this. So, either way, having a secondary insurance on Kiley does not and will not ever help as long as Tricare will not cover her.

Kiley’s situation is FAR from easy right now…. there are so many more complications, but we are thankful for children services and that they can help us get Kiley the help she needs. Kiley was kicked out of this hospital about 45 days ago and because she is in their care while they are desperately searching for a facility that is fitting for Kiley’s needs. Kiley is still at this place because she can be there with a 1:1 staff with her 24/7 to keep her safe (children services is paying out of pocket for that). This hospital has accepted the 1:1 pay which is a blessing because originally they were going to transfer her to the juvenile detention center once her 30 days was up. She hadn’t even committed a crime! It is hard enough to find someone who will take a child with RAD but then you add that she is cognitively delayed with a low IQ and it’s nearly impossible….then you add in her violence. She has been turned down by everyone so far in and out of the state of Ohio. This hospital she is at is not where she needs to be right now….it’s not safe for her – even while she is on a 1:1 she is not doing well. She needs the PROPER treatment!

WHAT DOES THIS ALL MEAN AND WHY AM I TELLING YOU THIS? I am telling you this because I need you all to stop and pray about this AMERICAN HEALTH CARE ACT! Right now, it is already battle enough dealing with insurance companies and mental health, but this is just going to make it so much worse. The AHCA will have a harmful impact on those with mental health issues (and also those with substance abuse disorders as well – and with this heroin epidemic that is going on right now, this is NOT the time to leave these people without the ability to get help!)

Here are a few quotes from Linda Rosenberg. She is the president and CEO of the council, which represents mental health centers, addiction treatment organizations and hospitals. "The American Health Care Act (AHCA) as written would devastate Americans' mental health and addiction coverage and care" ..."They'll be in the streets. They will be homeless. They'll be picked up and put in our jails because they'll trespass or jump a turnstile if they're in a city”
"They'll try to live with any relative they can find. They'll be in shelters. They'll be in ER rooms in hospitals. And they will die."
THIS IS MY DAUGHTER! This is Kiley, this is the child and children of several of my friends, this is YOUR child because YOUR children become at risk when the mentally ill are on the streets. This our world…. PLEASE stop and pray for it!!!!!!!!!!! And please, if you agree with what I am saying, take the 30 seconds it takes and fill out this link and tell Congress to vote NO tomorrow!!!!!

That's a real story from the part of America that made Donald Trump president. Mental illness is real. If you don't step over mentally ill people every day of your life as they panhandle and mumble to themselves in the street, it's because they're on government programs. It's worth the money.

I've got nothing to add to that, except to say this is why I so often question myself for what seems to be a diletantish waste of time writing stories. I should be focused completely on making money so I can help people like her.


  1. That story, and others very much like it, has been told at numerous town halls, in thousands of emails, on podcasts and tv and radio programs, for the past few weeks. It's tragic. We'll see tomorrow if they've been heard.

    As for you - I know how you feel, I often think, if I were rich, I could do so much. But what would I have had to have done, what would I have had to give up, to get rich enough to matter? Doesn't that have value, too?

    I can bring in the Jenny Odell statement about the value of art, if you need it, but you may have already read it (in my "Why Bother?" post kicking off Pushcart XLI). Never doubt that art matters - not just in its effect on readers/viewers/listeners, but in its effect on its creators.

    1. Thanks for the reply, Karen, thoughtful as always. I certainly don't intend to stop writing in order to make more money. In the first place, I seem incapable of not writing. Secondly, I'm not especially good at making money, and even if I were, I'm worse at letting it pool up in sufficient quantities to help on this scale. I do sort of mistrust answers that tell me writing fiction is what I should be doing, for the same reason I mistrust stories about Trump being blackmailed by the Russians over peeing prostitutes: I mistrust anything that tells me exactly what I want to hear.

      That doubt expressed, though, I can't deny that art at least has one effect on me as a creator: it gives me a reason to get out of bed in the morning. Like anyone, I'm entitled to do things in life that make me happy. I've just chosen a really time and energy-consuming way to be happy. Sometimes, it seems selfish of me to put so much input into my own happiness.