I don’t really know how interesting this is going to be for 95% of you, but someone asked me to write about it and after some consideration, I decided I would for two reasons: 1) A long-time reader asked, and I like her, and I’m a giver like that and 2) maybe even if this doesn’t apply to you and never applies to you, it is somehow informative to have some idea of how this goes, even if only just as a bit of an eye-opener about how health care works in this country right now.
So if you’ve been reading along here for a while, you already know that my daughter is now in her fourth month of residential psychiatric care, and our private insurance—which, for the record, goes though One Of The Gigantic Insurance Giants—carries exactly zero benefit for the care she’s receiving. Zip. Nada. Not a single cent of it is being paid for by insurance. I could write an entire book about why this makes me want to set things on fire, especially because our insurance DOES cover “acute care hospitalization,” which means that they DID pay for the times when the kiddo was an immediate danger to herself and spent anywhere from a few days to a couple of weeks being “stabilized” at a facility that costs twice what the residential place costs. The difference is that THAT kind of hospitalization is “meant” to be short-term and THIS kind is “meant” to be longer-term and insurance companies would rather pay more for less time and OH GOD GIVE ME A LIGHTER.
In case you’re not getting my drift here, I think this is beyond stupid. Unfortunately, I don’t run the insurance companies.
For anyone who likes to bitch about the government “getting involved” in healthcare in this country, let me just tell you this: My ex-husband makes an excellent living, and he pays child support. Otto makes a decent living, and so do I. Between the three of us we have two (mortgaged) houses, food on the table every day, all of our needs covered and—let’s face it—plenty of “wants” as well. (It helps that none of us have terribly expensive taste, but still.) We are solidly middle-class. My kids have THREE working parents, all of whom are deeply grateful to have escaped unemployment during this bleak time in our country’s economy. Sure, there have been salary freezes and I’ve lost clients, but we’ve all continued working. I don’t think any of the three of us have ever felt that we lacked or that our kids were left wanting for anything. We pay a hefty chunk of Otto’s salary towards our (subsidized) health insurance, but I have always felt like it was well worth the money we spent; our out-of-pocket costs, even when Monkey had surgery, even for Chickadee’s short-term hospitalizations, were very reasonable.
How long do you suppose two relatively fortunate households like ours can afford to provide necessary medical treatment in a situation like ours when there is ZERO insurance coverage?
I’ll give you a hint: The facility Chickadee is at—and it is one of the less expensive of its kind—costs $550/day. That’s $16,500/month. As we crossed the 3-month mark, we crested $50,000 in uncovered medical expenses (with no foreseeable end in sight).
As I spent hours upon hours doing research and looking for answers, I kept asking “How do people pay for this?” And the answer that came back, most frequently, was, “They don’t. They go bankrupt.”
So. This, right here, and the figures I just gave you? Mark this date on your calendar, because this is the most I’ve ever discussed money here, and it probably won’t ever happen again. I have a lot of neuroses surrounding money, anyway, and I was raised in the “we don’t talk about money in polite company” sort of way. Do I talk about money in the general, let-me-give-you-some-tips sort of way? All the time. Do I ever lay out my personal finances on the Internet? Oh lord, no, NO, A THOUSAND TIMES NO. It’s not my way. And as I finally told the whole story of what was going on with Chickie and said only that it was “expensive” and we were “worried” (wherein “worried” means “thinking OMG WE ARE GOING TO BE HOMELESS AND EVERYONE IS GOING TO DIIIIEEEE!!!”), people started talking about “helping” and “donating” and I put the kibosh on that just as fast as I could. Because this is scary—awful, really—but this is a kid with three parents with decent jobs and I’m well aware that we are fortunate. I could not, will not, take money from well-meaning folks when so many other families have it worse. Period.
A lot of families are living paycheck to paycheck. Again, we are both frugal and fortunate; the hospital required a cash deposit and we had enough money for that. And then they required another payment and we had enough money for that, too. Between the three of us, we managed, in part because of my aforementioned neuroses about money and resultant penchant for squirreling away savings for a rainy day. (It’s possible there was a point at which someone said, “Well, here’s the motherfucking thunderstorm!” but I admit to nothing.) But as my daughter’s hospitalization continued it became clear that yeah, we can’t do this indefinitely. Who could? I mean, really, except for those who are really rich?
All of that is background. The question I was asked, actually, was how we got Chickadee on Medicaid, because—spoiler alert! GOOD NEWS!—this weekend we finally received confirmation that she’d been approved. Quite honestly I feel a little hinky about it even now, because—see above—this is a kid with three parents who make a decent living. But on the other hand, NO ONE can afford the kind of treatment she needs as long as insurance companies are allowed to exclude it from their offered coverage.
Here’s how I did it:
1) I asked a lot of questions and did a lot of research on how a minor might qualify for Medicaid even if her parents make “too much money” for the “regular” qualification.
2) This led me to my local DFCS, where I was told I could apply for coverage for her under my state’s deeming waiver if she met the criteria to be declared disabled. (Fellow Georgia folks might better recognize this as the Katie Beckett program.) I went through the paperwork to apply on Chickadee’s behalf for this program.
3) A week later, I got a phone call from a nice gentleman who explained to me that Chickadee was ineligible for this program because she was currently hospitalized. This program is specifically geared towards keeping high-care-needing kids OUT of the hospital, he explained. Should she end up back at home but still in need of supplemental coverage I could reapply, but only if we’d already been turned down by SSI, which—he pointed out—was probably where we should’ve applied in the first place.
4) I started an SSI application on Chickadee’s behalf. Note that our income makes her ineligible for SSI, except that there’s this handy law that states that once your minor child has been hospitalized for over 30 days, she can be considered a “household of one” with independent assets. I don’t know about your 14-year-old, but mine doesn’t have any assets (at least I thought she didn’t… keep reading), so we went ahead and applied for her that way.
5) Our first SSI application on Chickie’s behalf was actually interrupted before completion and denied because I co-own a savings account with her which quite literally holds 14 years’ worth of birthday and holiday checks, allowance, etc. That account—her life savings—had more than the allowed limit in it ($2,000) for her to qualify. I was told that money needed to be paid to the hospital, and not only that, it had to be paid DIRECTLY to the hospital, DIRECTLY from that account, or the government would suspect fraud if it was moved in any other way.
6) I spent a very entertaining few days trying to get my (online) bank to take my child’s life savings and somehow give it directly to the hospital. For lots of stupid logistical reasons, this ended up being impossible. All I could do was move the money to my (non-online) checking account and then write a check to the hospital. I then had to investigate getting a sworn affidavit explaining what I’d done and why so that the government wouldn’t put me in jail for fraud because it was literally impossible to move the money directly. FUN!
7) I called an advocate and also spoke to a couple of disability lawyers, just to make sure I had all my ducks in a row. Like, for example, I thought I had to appeal the SSI denial, but actually, we had to reapply. You only appeal if the reason they turned you down wasn’t true. It was true that Chickadee had initially had too much money in the bank, so we needed to start a whole new application.
8) SSI application, take two: I’d done the first one over the phone; for the second one, Otto and I went down to Social Security in person, and we brought donuts. The rep we worked with liked us, appreciated that by now we had an organized folder of paperwork, and seemed amused by the donuts. (Hey, whatever works, man.) This time we got through the entire application and were told that Chickadee, if approved, would receive a $30/month SSI payment. I may have done my slightly-hysterical inappropriate laugh while explaining that the SSI was not really the point; we needed the Medicaid to cover her hospitalization. He said he understood. (If you qualify for SSI, you qualify for Medicaid automatically.) Once everything was done, he told us the state had 150 days to make a ruling. I cried most of the way home.
8) I started freaking out every time an envelope arrived at the house with a return address from the Social Security Administration. It was various pieces of paperwork, either telling us that they’d requested information from this or that doctor or asking us to give this sheaf of forms to this or that person. One packet requested that we have the enclosed paperwork filled out by Chickadee’s teacher. I gave it to the hospital.
10) Three weeks after the initial “teacher” packet, I got ANOTHER one, saying the first one had never been received and our application was “in jeopardy.” Commence major freak-out. I called the adjudicator listed on the cover letter and was able to ascertain that the packet HAD been returned, but as the psychiatrist paperwork and teacher paperwork had ALL come from the hospital, somehow the teacher stuff had been overlooked and misfiled with the doctor stuff. Phew. I had a really nice conversation with the adjudicator, a fellow mom who was not at all the “government robot” I expected. She told me the file was complete and “looked good” and that she was sending it to review that very day. “Sit tight for 30 days,” she told me. “I can’t promise anything, but… sit tight.”
10) Here I should probably point out a few things, like that being ruled disabled by Social Security as a minor is very different than being ruled disabled as an adult. When you hear horror stories about applications for SSI that drag on for years and through several appeals, those are stories about adults. Apparently for minors the rules are a lot less complicated; we’d been told that if you apply for a minor, pretty much if they’ve exceeded two related hospitalizations in a year, they qualify. Chickadee was on her fourth hospitalization in six months, so we were pretty sure she would qualify… it was just a question of WHEN. Also note that once you HAVE Medicaid, it’s like any other insurance in that they still review associated costs and decide whether or not to pay—it’s just another form of insurance, not a magical money tree—but again, the criteria for what they cover tends to be a little more inclusive than most private insurance.
11) Eight days (not that I was counting…) after I spoke with the adjudicator handling the application, we received a letter informing us that Chickadee had been deemed disabled by the government and eligible for both SSI and Medicaid, retroactive to August 1st.
12) I cried again (surprise), but this time with relief. We have already paid the hospital for June, and we’re still on the hook for July. It’s a ton of money, but still. We can manage, now. Probably the remainder of these bills will be covered.
13) I am still investigating what happens here when she’s discharged from the hospital. Once she comes home again, she’s ineligible for SSI because she’s no longer a household of 1 (and exceeds the income cap). I don’t know if this means she loses Medicaid as well; if she does, we can go back and apply under the deeming waiver, but I’m hoping she gets to keep the Medicaid without our having to do that (because it’s the whole entire process over again, please kill me, and the reality is that our private insurance will cover whatever she needs as an outpatient, but the chances of rehospitalization remain high and I don’t want to have to do this again if that happens).
I estimate that, all told, I spent about forty hours on this process… maybe more. I’m a relatively bright, educated person and parts of the process (figuring out who to contact, understanding all of the various rules and exclusions) were convoluted to the point where I often felt like I had no idea if I was doing the right thing or contacting the right office. As annoying as it was, we got through it pretty quickly compared to the horror stories I’d heard. Still, anyone who wants to tell me that medical care in our country is “just fine” is welcome to kindly do something unmentionable with those donuts I brought down to Social Security.
Oh Mir, your story exemplifies everything that is wrong with our private healthcare system. The fact that your daughter is hospitalized, that you have had to deal with all the insurance crap and more and that you can still crawl out of bed every morning is a testament to your tremendous strength. I think about your family every day and hope and pray for the best possible outcome.
Bless your heart! You and your family have been in my prayers. I have been a long time reader and really have learned a lot about parenting from your blog. I have a 12 yr. old girl who has always reminded me of your daughter. I also have a 10 yr old son who is probably not an aspie but is most certainly a quirky introvert and reminds me of your son. Thanks for sharing your story…all aspects of it…and know that it not only helps you to get it out it helps all of us out here reading it.
I’m so glad that you were able to navigate the insanity that was the process you when through to get Chickadee on SSI and M. My father was disabled and I was the one who had to handle all the SSI and disability insurance issues and it made me very angry that had he not had someone to do it they would have expected him, with his disabilities, to figure it all out. I’m not sure what the solution is but you have eloquently highlighted another example of how “they” make things most difficult for those who need the most help.
Wow, Mir. Thanks for putting it all out there. I hope this helps someone.
Yeah for qualifying! That is interesting that they are only going back one and a half months. When our kids were on medicaid in Idaho when we were dirt poor and scraping by medicaid went back 90 days. Have you checked to see if your state can do that? (of course you probably have but I thought I’d mention that…) Congratulations though. Seriously, what a blessing! Thanks for sharing the process!
[Mir here: Angela, she didn’t qualify in June because she was not yet an eligible “household of 1,” and she was disqualified for July because that’s when we paid down her savings account. We paid it down mid-month (as soon as we were told to do so) but it made her ineligible for the month.]
Medical care in this country is SO broken and we don’t even have a severely sick family member (yet, but that’s another story). My husband had to have a precautionary MRI close to the end of the calendar year and called to get it in so we wouldn’t have to pay another deductible just because it was done on January 2 rather than December 30. He called and got pre-approval from the insurance company and it was hunky dory. Until the insurance company refused to pay. “It’s not covered.” Then why did so-and-so pre-approve it? “I don’t know, but we will pay it since they did.” Fast forward TWO YEARS, dozens of phone calls and a hundred emails later. It was resolved because the wonderful hospital agree to dismiss the fees and the insurance company, that we paid a FORTUNE to each and every month, got to not pay one red cent.
But you – go Mama Bear. Good for you that you stood up for her and are on her side, even if she doesn’t always see it that way.
The result makes me so happy for you all. The process? Makes the baby Jesus weep. (And me too.) I could keep typing, but I might never stop, so I’ll leave it at that. Well done, Warrior.
I have had extensive conversations with my therapist about why I won’t bill her through my insurance. When I went from full time employment to consultant in a previous job, and had to get my own insurance, being on Zoloft PLUS seeing a counselor meant pre-existing condition. Nevermind that I was, you know, GETTING HELP, so that I would not be a danger to myself or the rest of society (exaggerating slightly, but you get my point). In bad periods, I’ve had to dip into savings to float the extra visits.
So I don’t leave a paper trail in case I need to buy my own insurance again down the road. Turns out my therapist does the same thing with HER therapist…for the same reason. And she pointed out, “Even if Obama’s measures fix some aspects of mental health care issues, the insurance companies will find a way to stick it to us from another direction.”
Mir, thank you so much for sharing this process. It’s difficult to talk about, but there is so much rumor and misinformation out there. I’ve worked in the past with transitioning youth and adults on disability — while in many ways it is all so very specific to the individual hearing the experiences of others helps individuals and their family members ask useful questions.
I’m not even going to touch the broken-ness of the system other than to say it is truly the entire system and goes so far beyond partisan politics (not that they help). I have my fingers crossed that the US Department of Education grant announced yesterday to a Parent Training and Information Center in your state (for parents of children with disabilities) will actually be useful.
Lots of good ju-ju aimed at you and your family.
You are courageous, tenacious and just downright full of asskickery. Congratulations on this victory. Still praying for you all.
P.S. The healthcare and banking systems in this country must be designed to make us all either give up, go crazy (but you better not ask for help), or become completely numb.
Mir,
You continue to amaze me with your strength in this process. Hell, your entire FAMILY amazes the crap out of me. I am glad you finally got some help and I hope that this entry helps out anyone who finds it and also needs to go through this process.
Hugs for you and yours, and tummy rubs for the fuzz-butt,
~Morgaine~
Thank you, one of the reasons I requested this was because you never know who you can help via Google. Must have been nice to live in the days when you could barter for medical treatment with a couple of chickens. Although they tended to give a lot of lobotomies back then, so maybe not so much.
Insurance makes me insane, both as a provider and a user. As a provider I spend hours each month trying to get paid for my work. They seem to deny claims for no other reason than to delay payment. I had to quit accepting Medicaid because I spent at least one hour trying to get paid for every hour I did therapy. And Medicaid only paid 40% of my normal rate to begin with. If I kept going I wouldn’t have been able to pay my overhead. Not fair to my clients. I am grateful that I am married to someone who gets insurance as a benefit or we wouldn’t be able to afford coverage as a family of five. But our plan is convoluted that I cannot tell what is covered. I fear ever being in your situation. And I agree, our healthcare system is so very broken.
And that right there friend is why we waited until our chronically ill child turned 18 to apply for SSDI. Our experience with SSI was fairly smooth in the beginning. She was accepted within 60 days and we had help with all the co-pays and bills. Thank God! Here’s the kicker, If she is in the hospital more than 30 days she loses her SSDI. We don’t have to reapply but there is still a process and a butt load of paper work to get it reinstated each and every time.Then the reviews, where you basically have to re-submit all the same paperwork as you did in the beginning, there seems to be no rhyme or reason to the reviews, some come six months later and sometimes not for two years. I am so grateful for the help but it can be an exhausting process. I am a smart woman who has been advocating for my child for many years, and honestly the whole SSDI thing has really worn me down.
We also make a comfortable living and we are lucky to have great insurance, but we still have co-pays and deductibles, and our portion of a $1,000,000 dollar hospital bill (REALLY!) was almost what we paid for the house. The co-pays on the $1200 treatment she receives every day and our portion on the home health bill were so high that sometimes she had to go inpatient because we simple couldn’t cover it.
It is the sad state of the high cost of medical care in this country. Sometimes families who never ever thought they would need such help as Medicaid, simply have no choice.
I’ve known that our system sucks big time for a few years now. I am sorry you had so much trouble, and I’m thrilled that progress was made! I wish you continued luck with getting your daughter the help she needs.
WOW. What a freaking mess and a sham of how we work and yes, your story exemplifies precisely why “Obamacare” needs to stay.
All of that there just makes everyone want to scream! I’m sure you’ve done plenty of that, whether outloud or just in your mind. $50,000 for three months – holy shit. Easy to see why families go bankrupt. I love that food is the common “language” and that you take it to these challenging meetings. I’m heading to business meetings in Chicago shortly and I’m already trying to decide which kind(s) of cookies I’m going to bring (from Dallas). Hugs and appreciation for all you do to make OTHERS lives better, Mir, especially when yours is truly in a crappy spot!
Gaahhh. I work in health care and have a special needs child and consider myself fairly intelligent, but I have had that thought so many times-how do disadvantaged people figure some of this stuff out??? It’s ridiculous. And I agree with you on the health care-don’t even get me started!! We are lucky enough to live in a state that has a type of Medicaid only for children with special needs, and it’s relatively easy to navigate. However, we were thinking of moving out of state, and I had a hell of a time trying to figure out if other states offered anything like that, and if so what, and how would you go about getting your child covered…
Anyway. I’m glad you were able to figure it out and not go bankrupt.
Seventeen years ago my parents spent my brother’s entire college fund on 6 months of residential drug rehab for him. They had researched more than 15 places in more than 10 states. Insurance covered non of it (insurance did cover the therapy he received before and after rehab, just not the rehab itself). It’s a shame and it’s wrong that insurance doesn’t cover things like mental health and rehab (turns out my brother had severe depression and anxiety disorder and was self-medicating). I’m sorry you had to go through all of that, but I’m glad you figured it out. Here’s hoping and praying that Chickadee continues her healing.
I’ve watched what a mess dealing with hospitals and insurance has been for my parents going through all kinds of difficulties in the past couple of years, and it’s impossibly complicated and adds a tremendous amount of stress at a time when you can least deal with it. I am flummoxed by people when they say our health care system is just fine. No one should go bankrupt because of healthcare issues. Glad you found a way to make it work.
Wow. I’m glad that things have settled out (at least for now), and I hope that whatever the next steps are, they’re not this painful. And Diane’s story about how both she *and* her therapist don’t use insurance for their therapy is just too poignant. When I got insurance on my own a few years ago, it was through an insurance broker who wasn’t covered himself (he was waiting for a pre-existing condition to ‘age off’ of his applications). When even people in the healthcare and health insurance field can’t get this stuff straightened out, it can feel like there’s no hope for the rest of us. Congratulations on making it through the gauntlet on this one!
3 years ago a friend of mine was in the hospital for 8 months, multiple surgeries and treatments and then she died. The cost to her family: zero. We live in Canada.
I am so sorry you have to go through all of this. Yet another reason why I don’t understand the US resistance to public health care coverage.
You are the champion, my friend ;) I’m so glad to hear that Chickadee’s been approved.
That said… what a freaking nightmare of red tape and nonsense. I will debate anybody to the pain about the necessity for a serious overhaul of the healthcare system. I don’t understand how anybody can possibly think it’s fine the way it is.
I don’t think that medical care in our country is fine, and I agree that change needed to be made, but I also don’t think where we are headed is right. My friends in Canada and I have had this conversation and they are all adamant that it is nowhere near the perfect fix that everyone thinks we need. They wait weeks to see providers, and I heard a personal story of a person with severe back issues that is on a 6 month waiting list for an MRI before she can receive treatment. That doesn’t sound better to me, just a different kind of wrong.
I am glad that you were able to work through all of the red tape…lord knows as a government drone I deal with it enough every day, and it can be maddening…and get her the coverage she needs. :)
You have more strenghth and fortitude than anyone I know. The insurance companies in the US infuriate me to no end. As I was reading this it was blowing my mind that in this day and age they would not cover Chickee for her stay. I am so mad … If that happened to me I would be bankrupt as my husband has been out of work for almost a year and there would be no way I could even come close to afford this. Truly a scary thought.
I am sorry for everthing that you had, and will have to go thru to get Chickee the right care.
My thoughts are with you all the time. I may not comment often but I read every day.
People who think the health care system in the US is fine are either independently wealthy, or have never dealt with a major problem that is not covered or is under covered. I am so glad you were able to work things out and get some help.
As the person responsible for getting and maintaining services for my adult daughter, I cannot understand how anyone in crises or dealing with a disability can access these services on their own. I hesitate to dump this on my other children, because it is almost a full-time job. And my daughter is fairly high functioning. It is quite a relief to know that the service provider she is working with will step right in once my husband and I are unable to care for her.
Oh thank goodness. And kudos to you for wading through all that red tape.
I still can’t believe the people at the treatment meeting who thought Chickie wouldn’t be approved for Medicaid – or so candidly telling you that, anyhow. I think I would make copies of the approval letter, buy some cheap frames, and give them to everyone who was at the treatment meeting that day. Or maybe you could save them as a gift for when she gets discharged from the hospital. Anyhow, sorry it was such a long and convoluted process, sorry she had to be hospitalized in the first place, and sorry healh care in this country sucks – but Chickie is very lucky to have you in her corner. I think you’re doing a kick-ass job of things.
Mir, you are made of awesome, one fierce Mother Bear, woe betide (but hide the lighters/matches) the paper pusher that gets in your way. I’m so glad that at least some things are starting to work out.
I read everyday and think of you often
Thanks for bringing attention to the abysmal state of our insurance coverage in this country. It must be changed and soon; and while no univeral healthcare system is flawless, waiting a few weeks to see a provider is certainly preferable to going bankrupt or denied treatment. I live in Ohio and I can tell you that any time I need to see a “specialist” (or, in most cases, my own family doctor), I have to wait anywhere from several days to several weeks. If it’s an emergency or if I can’ wait, well, that’s where the ER or urgent care come in. It’s my understanding through friends in Canada and Great Britain that when you are on a long wait list there and can’t wait, you simply go to their version of ER. The only difference is the price: hundreds or thousands of dollars to us and zero to them. The ex-pats I know who live in a country with universal health care LOVE IT.
Having tooted that horn, let me congratulate you on getting the coverage you need for Chickie. How you managed this far is remarkable. The last thing you need right now is to be worrying about paying medical bills.
Your last paragraph says it all and explains what so many people just don’t understand. Not everyone has the resources, determination and intelligence to wade through all the paperwork to get what they need. They simply aren’t able. Unfortunately that frequently gets labeled as lazy. We don’t question that not everyone has the same physical strengths and it isn’t rude to say so. But no one wants to admit we don’t all have the same mental strengths and for those of us who do, we need to help those who aren’t just as we expect those with physical strength to help those who are physically weak. Does that make any kind of sense? We need a simplified system so everyone truly has access to many of the programs that are already in place.
Amen, Lucinda. And worse is when we accuse people of being lazy and sponging off the system—trust me, having gone through it, I feel pretty confident assuring anyone that you simply cannot get these services if you’re lazy. (And maybe that’s the point, to deter folks? I don’t know.)
Holy carp. I had no idea it was THIS bad. I don’t think I could have done what you did. You are amazing.
Everyone — I mean Everyone — should have an opportunity to read this post. The very rich and very poor seem to have no problem getting medical care. God help the middle class.
I really do think the reason they make it so difficult is so people will give up. They save more money from the people giving up than it costs them to pay someone to be obstructive.
Sorry, I’m cynical. It just seems terrible to me that they do this to sick people and their families, when you’re already dealing with so much.
That is exactly why I haven’t applied for Medicaid for my boys. I was told they’d qualify based on disability with their diagnosis, but I took one look at the paperwork and the process and decided that until I absolutely had to, there was no reason. So far, I still have to jump through hoops of fire, much like you’ve had to (military system), but at least it’s only in one gov’t healthcare system and not trying to navigate 2 at once – for now.
Send a copy of this to the White House. 10 letters every day are selected for the President to read and respond to. (I would personally pull this for him to read, but sadly I don’t have that kind of power.)
You are amazing! Chickie is so fortunate to have you for her mom.
Mir, you already know how I feel about the [lack of a] healthcare system in this country, but i wanted to pop in and say how much it chokes me up to see someone fighting for their loved one like this. Chickie may never really understand how much you have gone through to make sure she ends up getting the care she needs, but I hope that she one day will. And i hope that by the time she does, we’ll actually have something in place to help anyone and everyone who needs it.
Mir,
Why doesn’t Chickie’s treatment fall under the mental health parity act of 2008, which states that group health insurance plans (those with more than 50 insured employees) that offer coverage for mental illness and substance use disorders to provide those benefits in no more restrictive way than all other medical and surgical procedures covered by the plan. If you’re enrolled with a GIGANTIC insurance giant, don’t they HAVE to cover it? Here’s the link: http://www.samhsa.gov/healthreform/parity/
Nicole: Although I doubt this is the intention of the parity act, I think they’re given an out when they provide acute care coverage. The insurance would rather bounce people like my kid between outpatient services and “stabilization” services than pay for residential. It doesn’t seem like it should be legal, but by the letter of that law, I guess it is.
This process would make me INSANE, but I’m so happy to hear that it has worked out so far.
You rock! What to go to bat for sweet Chickadee! Hoping for the best!
*WAY TO GO
Thank you for sharing this. I agree with the reader above that you should send this to the White House, and any and all elected public officials who really don’t want to hear from their constituents.
I was one of those who lobbied both publicly and in private email exchanges for donations – not because I don’t recognize that there are people in far worse conditions, but because we love you and your family.
You are an awesomely fierce Mama Bear, and I’m just astounded at what you and your family have done to rally around C.
Mir is right – insurance companies prefer to pay for acute, short-term hospitalizations and cheaper outpatient therapies, ignoring the fact that – for girls like Chickadee – neither really serves their needs. Also, several short-term hospitalizations end up costing more than or the same as the residential care, without effectively treating the problem. And let’s not even think of the human suffering involved here – imagine being the parent of a girl who is prone to suicidal ideation but is kicked out of the hospital after 5 days. How do you keep her safe? How do you protect her siblings from a potentially horrific experience? And then, after a few days, she goes right back in, for another 1000 dollars a day. Way to save money, insurance companies!
Well done Mir. Very well done.
Wow, what a palaver but I’m so glad it’s finally sorted. I live in Australia and even I know what a shamozal the US healthcare system is and how insurance companies don’t really provide that much at all.
I wonder if the people who don’t need care don’t realize that the medical dramas are fiction. I too am Canadian and our woes are more to do with wait times.
It appears – according to TV – that one rolls up in a gurney and all sorts of things happen. MRIs and test results in hours. Medical teams brainstorming on the problem Surgeons ready to dive right in that very same day. After having a heart to heart chat with you.
But the story line doesn’t include the costs. I am only familiar with this subject through reading blogs, news stories and magazines but it seems a cruel and unusual punishment for an entire family to be taken down by the need for treatment. The itemized bills for bandaids and dressings. The for profit hospitals that feed the needs of the shareholder over the patient.
I recall the news story of the couple and their friend who went to jail because they traded identities for a medical emergency.
Something is wrong with a first world country that has war and it’s support. for profit hospitals, and a very litigious society as a way a major part of the economy.
We watch the politics of our neighbour to the south with much trepidation and more hope that sanity will prevail with the people coming before the profit.
Hi Mir,
I totally understand what you are going through. My 14 year old spent 56 days in the second treatment center this year…three weeks at the first one (and a hospital visit inbetween). We could have not gotten her the care she needed with our insurance case manager. She created the benefits that covered the residential care. She calls to check how this are going now that the kiddo has been home for a little over a month. She also investigated wraparound services for her. The school picks up the bill for that now, but she found our team for us. We have a small army of people-psychatrist, two school attached psycologists, case manager (not the insurance lady), school behavior specialist, wraparound behavior specialist, theraputic teacher and parent partner…it gets way crazy some days fitting everything in, but it means that the kiddo is still at home. She hasn’t been violent to others, but to herself. Have you talked to you school district about providing funding for her to go to a theraputic school? Here in CA it’s called AB Funding. The school district is supposed to provide an education to every child and if they cannot meet her needs, then they should pay. This is what we were told by the director of the agency (county run, but responsible for all the special need children) who places kids in a theraputic school. They even started a new program (the one the kiddo is in) for kids like her (multiple hospital visits, in treatment etc.) to try to keep them at home. I am not thrilled with her academic work (it really takes a backseat to the theraputic aspect right now), but she is there everyday and still at home.
I am still sweating ove rthe bills that we do have to pay…ambulance trips are insane and we had no control over her being taken in them. Gas and hotel costs to go see her in the various places (the closest hospital was 1.5 away, the treatment center was 5 hours, the rest were 3-4 hours away), failed medicines -Abilify was 336.00 with our insurance, she took about two weeks worth and had a horrible reaction to it, medicines that work (about 150.00 a month), er visits (3 of those) and some things that I should probably remember but can’t right now. It makes me nerveous to open the mailbox….
I hope and pray everyday that she will come through this…we don’t even have a good diagnosis and be the sweet kiddo she used to be..
Oh and did I mention she needs braces lol.
I completely relate to your reluctance to share personal financial information, but I am so glad you shared this! Unless people have literally walked in your shoes with a medical crisis like this, I don’t think anyone can truly understand the financial devastation that it can bring, even to families that are fortunate to be secure financially. I have not been in your specific situation, but I have had to deal with insurance on comparatively minor issues and errors, and it takes hours of time and research just to get someone to actually pay attention to you. Detailing your experience, not just with the amount of money it is costing for her treatment, but the mountain of red tape you had to overcome, shows what people are up against. Thank you for talking about a painful subject; this is so important for everyone to understand.
I have been quietly following your family’s struggles and as always, you all are in my prayers. You are a beacon of strength and determination and continue to inspire me as a mom and as a person. I believe with all my heart that Chickie will get better and stronger. Take care of yourself.
Yahoo! Good for you! I’m smart and well-educated, but I fear I’d have curled up into the fetal position of panic long before I could have fought my way through all that. I’m so relieved for you.
Thanks for sharing this!
I am European and dreading the day that I get some serious illness, now living in the US. This healthcare system is broken! And yes, where I’m from there are some waiting times. But I rather have to wait a little than go bankrupt, or just not being able to get any care.
And at least in my country they are trying to be more efficient with treatments and costs instead of seeing it as business where doctors etc. want to sell as much as they can.
Went to the family doctor yesterday with stepson for a wart on his finger. We were in for 1.5 hours! Got a total medical check (which he already had 6 months before and the kid is as healthy as can be). Luckily he is on Medicaid so it’s not our costs right away, but of course someone is paying for it.
Where I’m from most family doctors often have a “wart hour”. Just come in, get the thing freezed and walk out.
Mir, good luck with all this. I feel for you and I hope one day the US will have a fair health care system and insurance.
Oh Mir. I’m so glad things are on the upswing with insurance. I hope they are soon on the upswing for Chickadee. I’m thinking of you.
I also want to thank you for being so honest about the process. I don’t want to get all political in your comments but it makes me crazy when people think capitalism and healthcare are good bedfellows.
Until we get insurance companies OUT OF HEALTHCARE we will be dealing with paying for healthcare in this crazy, inhumane way. I urge you and all your readers to call your congressional representatives and ask them to support HR676, a bill which is introduced in every session of Congress with will create a Medicare-for-All system in the U.S.
I’m so sorry for what you and your family has had to go through, but it doesn’t need to be this way. Virtually all other industrialized nations (and some not-industrialized!) have a system that guarantees the health of their citizens to be a right, not a privilege.
http://pnhp.org has way more information than I can provide.
I’m paying a big premium to a big insurance company who is going to drop private policies three months before the insurance exchanges provided by the ACA begin. My current expensive policy pays for nothing except catastrophic coverage, after I pay a huge deductible. No x-rays, no lab tests, no diagnostics, no office visits. I, therefore, do not go to the doctor and yet I continue to pay the insurance company month after freaking month.
Implementing a single-payer health plan is an issue my husband (a retired physician) and I have been working on for years. The ACA is the tip of a very big iceberg. I wish you and your family well, and I wish just ONE person in Congress had to experience what you (and countless others) have gone through. Then and only then might we have doctors practicing medicine instead of insurance companies. Peace.
Well done, Mama Bear! May this be a sign of tides turning and all of that.
I’ve been working for a home health care agency since last fall, on the administrative/financial side, and it’s been a real eye-opener. The great majority of our clients are Medicaid (or dual-eligible Medicare/Medicaid) and the struggle to get paid for the services we provide is Kafka-esque. Our state no longer administers the payment of claims directly; rather, they outsource to the ever-sacred “private sector” — i.e., our Medicaid claims all go through one of two commercial insurers who are contracted with the state to administer these programs.
With a Medicaid population of only around 30 clients, I am on the phone WEEKLY for a minimum of three hours with these commerical insurers correcting mistakes made by their claims departments. (Additional time costs for both us and the insurer to fix, to say nothing of the cost to us as a result of the delays in payment…)
Additionally, one of our commercial insurers loaded our contract incorrectly (or didn’t load it at all) which has resulted in a three-month backlog of denied claims — because the computer can’t match the claims with a contract. They have been “working on the problem” for two months and we are carrying over $30k in unpaid claims as a result.
I have said for years that as long as health care in this country is provided by entities driven by a profit motive, the system is doomed to fail the people it’s supposed to be helping. Good for you for fighting it to the finish.
Tenacity, tenacity, tenacity – and the occasional weekend asleep in absolute denial, that’s all it takes (sarcasm.) Good for you – I’m so glad things are resolving a bit, financially at least, although in our really absurd American way. We have now hired a very expensive lawyer to help us through the process of preventing the Commonwealth of Massachusetts from taking our home of 39 years to keep my mother (age 98) in her nursing home – now that she has expended her own considerable financial assets. I understand that the state wants its money back, but come on. They even took the little bits of money my mother had stashed to leave her only two grandchildren. It seems like it’s only those who are very rich already who can afford long-term care AND manage to protect their assets legally.
It’s ridiculous what we make friends and neighbors in our own society go through, unnecessarily, when the means to help them is sitting RIGHT THERE. Thanks for telling this story, Mir – getting the word out might change some minds and motivate people to start fixing what’s wrong.
Mir, you are absolutely right; the medical system in our country is completely broken. A dear friend of mine and her spouse just this month lost their home because of cancer; the insurance company declared themselves “done” because the lifetime limit was reached, they spent their savings, their 401k, took out a second mortgage on their home, and are now bankrupt and homeless.
On a trivial scale, here are my anecdata (and keep in mind that I pay $800 a month for the privilege of having health insurance): 1) two summers ago I found a yellowjacket nest in my backyard when they rose up and stung me. My family has people with life-threatening allergies to bee stings. I called my doctor’s office and was told they couldn’t see me for SIX DAYS. My insurance won’t authorize an ER visit without prior authorization, so I made the 1-800 call, spent 20 minutes pressing 1, pressing 2, speaking clearly, and leaving a message. I finally gave up and went to a walk-in urgent care place, where I paid out of pocket. Seventeen hours after I was stung, I got a call back from the insurance company saying, “Yeah, go to the ER”. Had it been an actual emergency, I would have been long dead.
2) In a horrific bagel-cutting catastrophe, I sliced open my thumb. Again, couldn’t get seen by my “official” doctor, couldn’t get permission for the ER, so again I paid out of pocket for an emergency walk-in place, where I received 32 stitches (from a brilliant doctor who left me with only a tiny scar).
Can we staple this to the forehead of everyone who objects to fixing healthcare? Hug, martini, and better days…
Mir-
Getting what isn’t covered taken care of can be very exhausting. And, I agree completely that healthcare needs to be “fixed”. However, if we as Americans think the government can fix healthcare, try calling the IRS sometime. That is what you will get with government healthcare. Or what you have already experienced with SSI/disability application.
I had to come back and add a little more of my two cents.
I have lived with government run healthcare as a military spouse, and it sucks. I have had numerous PCP’s, usually with them changing every few months, they don’t want to order any tests, and that’s after you’ve waited weeks to see them, no matter what your illness is. I understand that Universal healthcare won’t match the military system verbatim, but it will be similar. And again, NOT saying the current system is okay.
I worked as an office manager for a very small company that managed homes for the developmentally disabled. All of the paperwork was a challenge, and there was a TON of it. In Texas, Medicaid has 45 days to update your staus anytime there is ANY type of change (e.g., a parent goes from working to retired, changes from SSI to RSDI). During that time we did not receive any payments for our clients. We operated on an extremely slim profit margin. Basically if Medicaid was not paying for the client then the owner was paying for the client. It was sad and confusing and exasperating. There needs to be a better way.
This should be an op-ed. For some reason, most Americans just don’t believe that healthcare costs can crush any one of us at any time. Great job…an issue close to my heart for a million true and personal reasons. You nailed it.
Let’s hope none of your readers will ever need to know this information (if only…). Having it laid out this way, though, maybe it will makes someone else’s life less challenging. Good on you!
I didn’t read through all the responses, so I’m sure I’m reiterating some of what has already been said; I feel your pain. I’m dealing w/maybe an 1/8 of you are, and I’m going nuts. My youngest has ‘sensory defensiveness disorder,’ (along w/several other things). None of those problems are bad ENOUGH to get the district to even test her. But, if she isn’t getting additional OT & ST, plus HOURS of extra help at home,she wouldn’t have made it to first grade. The irony is that she knows the stuff, she just needs less distraction & more movement to be able to show you she knows it. From a social/emotional standpoint, the kid is better than most adults. They see how she interacts socially & are like, “she’s fine.”
Soooo, we’re paying for OT & ST privately. We have VERY good insurance, BUT…the therapy group, (like more and more groups,) won’t deal directly with the insurance company. This means we have to pay upfront & wait to be reimbursed. You can imagine how THAT’S
going. It’s not. (Got a little quick w/the ‘enter’ button there, sorry.) We are fronting $500 a month, which is a drop in the bucket compared to you. We have money saved, (yeah, I’m a wantnot subsciber,) and even have “investments” that are supposed to be for college & retirement. (But if we needed to, we have a place to dip into if we need cash.) The insurance company’s first line of defense is to deny each and EVERY claim w/a letter indicating they think we have additional insurance. One we confirm w/them that we don’t, (and never have,) AGAIN…they resubmit the bill and then they deny it. I suspect they do these 2 first steps because there’s a percentage of ppl who will say, “Ok, they said no.” and let it end right there. It is Sept and I’m still waiting for our first reimbursement, from JANUARY!!! I opened a credit card to pay the therapy group, because we are now cash poor from this. We were at the point that she was going to have to stop treatment until we could afford to front more money.
Yes, we will get reimbursed! When? The insurance ppl can’t stop laughing at me long enough to actually answer. So, while ours in nothing cost-wise in comparison, on this particular part of the subject, I’m right there with you.
Ack. Even secondhand, and on my antidepressants, it still makes me want to throttle everyone in the system. Flashbacks to our company’s refusal to cover something that clearly WAS covered, according to the language of the policy (and I worked myself in insurance long enough to know). Fought it and they stalled me until it went past it’s statute of limitations. It still enrages me, and that was over a mere $1,000 or so. I can’t imagine multiplying that by over 16 times . . per MONTH.
You are one strong, STRONG lady!
Mir, that sounds like a horrific struggle. And a 14 year old having to spend her birthday money on psych care? I don’t have works for how much that sucks.
Great news that they’ve accepted her for Medicaid!
New Zealand has universal public health care. I appreciate it greatly, but I also reckon Americans should be looking at the details of what you’ll get with universal healthcare. I know nothing about what ObamaCare is going to be like, but here’s the good and crap of ours:
It’s EXCELLENT in emergencies: world-class care totally free. Average waiting times at ER of a few hours, but zero if life-threatening.
It’s very good for if you’re seriously sick. You can see a doctor same day for a cost of $10-$40, get necessary tests done fast (often immediately), and most drugs are almost free. But you’ll wait weeks to months to see a specialist or get an operation, depending on what’s wrong. People have died waiting for heart treatment, though that’s seen as scandalous. And some expensive treatment options just aren’t available, esp new drugs.
It’s very good if you’re less seriously ill and can be treated by a GP. Cheap visits, free tests, cheap drugs.
It’s pretty bad if you need elective surgery. Waiting lists of many months for (eg) hip replacements, and you have to be in a lot of pain to get on the waiting list. And if you’re more or less functional, you’ll have to pay for your own surgery – public cover just won’t be available.
No dental cover for adults, and no cover for children’s orthodontics. No optical cover at all.
No cover for therapy, unless it’s very definitely related to an accident. Ditto physio, chiropractors etc.
Strong emphasis on managing mentally ill and disabled people “in the community”, meaning not a lot of residential units. Addiction and mental health care’s a bit of a mess. Eg long waiting lists for methadone treatment.
A lot of people have health insurance to pay for the extras, esp elective surgery, and to avoid the waiting lists. The positive is that surgery insurance is only about $50/month/person.
If you think the SSI paperwork was daunting, wait til the government runs healthcare.
Mir,
Please keep fighting, and please, please, please keep us up to date on your battles. It helps more people than you will ever know.
I am fortunate to have decent insurance through my employer that has a mental health clause, but not everyone is as fortunate as I am in that respect.Thankfully my meds are covered, and I haven’t had to pay much out of pocket.
On the opposite spectrum, my ex was diagnosed with cancer 2+ years ago. He had good insurance through his employer, but his deductible and co-pay has left him in a position where bankruptcy may be his only option. He isn’t even released from care yet, or “cured” and the collection people are all over him. While he fought the battle with months worth of chemo and radiation, he couldn’t work, but the bills kept coming as did the phone calls from the collection agencies. There has to be a better way to keep the “unhealthy”, Healthy without bankrupting them or their parents. I don’t know that universal healthcare is the answer, but I do know that in the past 2+ years of fighting this battle along side my ex, he has been told multiple times to claim bankruptcy and that just doesn’t seem like a reasonble way to go for anyone. Also if he claims bankruptcy now, he will still be on the hook for any future co-pays or deductibles.
Seems like the message from the insurance companies is Don’t get TOO sick, we’ll cover you if you need a little help, but we will bury you if you over do it. Unfortunately, none of us have any control over how “sick” we get.
Much love to you and yours, and keep up the good fight!
Wen
What Mir wrote is a typical example for me for your rotten health care system in the USA. We have an excellent healthcare system in Germany, no universal, “governmental” system like in the UK, but a law that allows everybody to become member in a “legal” insurance compared to private insurance. If you are not able to pay the monthly insurance fees, State authorities do. Children up to 18 are automatically insured for free (!) with their parents. So there’s nothing like Medicaid in your country, but everybody is insured here. And the wealthy people can insure themselves privately.
The “legal” insurances pay directly to the united physicians and public hospitals, residencies for elderly or psychiatric care institutions and so on. Most of the physicians are united and treat everybody, a few doctors only cure private patients. If you have an emergancy, you go to the best university hospital in town, get the needed treatment (even listing on transplant lists!) and get whatever you need without paper work. You just hand them out your insurance chip card and afterwards the hospital will charge you 10,- € for each day in the hospital for example.
Restricitons are: glasses have to be payed on your own, teeth care is only rudimental, and for medicine you have to pay a maximum of 10,- € extra and have to accept that your insurance has contracts with certain pharmaceutic companies, so that you do not have the choice in the drugstore unless you pay privately. But that’s not really a problem, if needed, your doctor can prescript you exactly the medicine you are used to. And there are some extra private insurances available for extra teeth care, daily money in case you are in a hospital and have a business, extra single rooming in hospital etc…
I think nobody in your country can really imagine and believe the benefits of our system, being social but not “socialistic” at the same time. I pray for you that the Democrats will win the elections again. They seem to have an idea of how medical care could work differently for you in the US.
Haven’t read the comments and therefore may be duplicating another’s point. I have worked in almost every aspect of the healthcare industry since 197??? It is my humble opinion that a very good place to start in reform is to restructure the buisness of insurance. Specifically, they should be designed as non profit… no share holders, no expectatitions of turning a profit/defining success as covering expenses. the offered coverages/plan options “for sale” designed based on meeting the needs/wants of its customers (those carring policies)rather than meeting the financial expectations of shareholders.
Hospitals should also operate within the non profit world, again responsible to their patients and communities and not a board of shareholders looking for financial returns every quarter. These successful models exist in communities throughout our country but aren’t the prominate ones with voices on the hill.. I wish there was an easier way/time/focus etc to have the moms/ family leaders learn of all the different buisness models for healthcare to give other reform options a voice. You know, the grassroots kind of change efforts.
Just saying.. and boy, i could say so much more.
I used to work with developmentally disabled women in a group home. Even for those women, all on Medicare due to severe disability, the situation was ridiculous. They could never save for anything special, because they’d risk losing their benefits if they accumulated money in their bank accounts. Keep in mind, they could not accumulate money easily. They all worked at jobs that were appropriate for their skills. None of them made much money at all, and it was basically deducted from their benefits. On one level, I do understand this part, but man, once you come face to face with someone dealing with all this crap, you realize how ridiculous much of it is.
Sorry for what you’ve had to go through, and thank you, again, for sharing your experience. It’s a perspective most people don’t have until they’re right in the middle of it.
Thank you for writing about this, and all of it. It is helping more people than you know.
I can’t even imagine being in that position. We live paycheck to paycheck, and we ended up having to declare bankruptcy to save our house after I had a miscarriage that needed several procedures to, um, complete. It was super delightful to argue with bill collectors and insurance questioning the need for covering certain procedures and testing after I’d been bleeding for three months and fighting infections, not to mention the misery of reliving and discussing the loss over and over and over again. That’s nothing compared to the ridiculousness you guys are going through. More hugs, more deep breathing.
oh deity of choice
yes i will say, it’s much harder with an adult than a minor, since that’s when my child went through this same experience but, that doesn’t mean it’s any easier at any age!!!!!
fortunately,
i got to keep my kid on our insurance until age 26 because of some political stuff.
but
the major kicker is still, my husband has a good job (faculty at a state university) with insurance. I don’t get insurance (part time adjunct faculty at a community college), but i do get paid.
when i want to gauge my eyes out, i think, at least
at least, we can help him out for his medications (hello? mental illness, usually a cocktail of drugs, with each ingredient being over $700/mo for the cheap one)
at least, since he doesn’t get the full disability amount (sorry, we saved up for college and that counts against him) we can buy food for him
where do people think you can pay for this?
even the more conservative medical professionals believe mental health needs BOTH meds and lifestyle change – so, not just meds, but counselors, psychiatrists, life skill counselors – to affect positive changes – not a cure, there is no cure, just better life skills.
and they all charge money, all three professionals.
my son is feeling well enough to be able to contemplate flute lessons again. “well” does not mean cured – there is no cure-, but well enough mentally that his thoughts can keep up with the progression of music – this is a kid who had a full-time music scholarship.
but, if he takes too many flute lessons, he could lose his disability.
music lessons are a luxury.
grrrrr. grrrrr. i’m an old school scientist geek, all the stereotypes, no social skills, no artistic skills, but even I recognize what a crock that idea is.
grrrr. sigh. shutting up now before i insult somebody.
So many parts of your story are all too familiar. Hubs and Amigo had (yet another) meeting with DVR to get the required documentation that apparently SSI offices NEVER REQUESTED in the first place…. and on and on and on and on.
For the sake of Google and because someone mentioned the difference for the process over the age of 18, I want to throw out here that the government has funded Community Work Incentives Coordinator (CWIC) positions in various areas (I’m not sure how wide-spread they are — my personal experience was on the East Coast). The CWIC has been trained to help people with SSI and SSDI benefits, not so much with the initial application, but for individuals that are working or considering working to understand the implications of paid employment on their benefits. This includes understanding how to extend health insurance benefits, even if the individual is no longer eligible for a cash benefit (more an SSDI/Medicare thing than SSI/Medicaid — but ask your CWIC for details!). The CWIC can also help connect the individual to employment services and can help the individual develop an appropriate income reporting system when employment begins. CWIC services are FREE!! (Or, you know, already paid for by our tax dollars — one of the better uses, in my opinion.) The CWIC I worked with was awesome and really helpful in assisting individuals in maximizing the supports available while they tried to achieve maximum independence.
Mir, I’m glad you got the coverage you needed for your daughter. I’ve found this story wildly illuminating. I wonder if its possible for you to write the article for a more general audience? It seems to me that you have an Atlantic article in the making (or somewhere — I’m not knowledgeable enough about publication venues). It’s a personal story, so not something anyone can request of anyone else, but everyone needs to hear the story.
As another commenter wrote above, I have an 11 year old who reminds me of chickadee, too (who also has a younger brother). Chickadee is an amazingly cool kid and I hope she knows that we all think so.
My son also was (and is) in need of the Katie Beckett program, but I applied several years ago, and it was quite simple. I got the number from the Day treatment program he was in, called, had a home visit, and filled out the paperwork. Every other year they do a home visit, and the other years just paperwork. I hope anyone who really needs this program tries, because in my area it was very, very simple!!