Skip to main content

Over the last few months, I have debated whether or not this was a subject I was even willing to discuss in a forum such as this one.  It is something very personal, and the kind of thing that has torn at me for the last two years.  My oldest son, incredibly intelligent, funny, and otherwise healthy, suffers from autism.  And now, at 10, will be leaving our home.. and I'm devastated.

I'm happy here to not reveal names, because that would be a bit to personal.  I'm a proud father of two.  Our oldest child, 10, is smart.  Not "oh, he does well in school" it is an almost savant level of intelligence when math comes into the picture.  On standardized testing, he breaks the scores at his school and sets the curve.  When I see his report cards and standardized testing, I smile with incredible pride.  He's my son and along with my wife and second son, they are the most important things in my life.

And that's what makes this week the most difficult.  And it's a story of how messed up US healthcare really is.  

Our son, autistic, suffers from OCD, bipolar (which can't be fully diagnosed because of age), and schizophrenic behavior and self-harming behaviors.  Up until two years ago, at 8, through the help of counselors, therapists and psychologists, most of these issues could be addressed.

I had left my job with a hospital to work for myself so I would be able to help my wife with more time available to them, the ability to come home as needed.  I carried over and started with our own insurance carrier, which was fine.

Two years ago, at Christmas, an event occurred in our home that changed everything.  After treatment for all of us in a hospitalization from the event, we had to rebuild.. start over.  Building a new house, re-evaluating medications for our son, and starting again.  At our next renewal, our insurance provider took a pass.  And suddenly, getting insurance to cover our autistic son became impossible.

Our costs per month skyrocketted.  Medication alone went to more then $300 a month to start, and as of today, it's more then $700 monthly in just medications.  

All of this said, his academic excellence continued, racing ahead of his peers and beginning advanced coursework.  But his level of frustration with things being slightly out of order became more and more dangerous.  Teachers compelling him to "show his work", which he adamantly refused as "lazy! lazy! lazy!" risked having blowouts that resulted in property damage.. and more costs, which came through us.

Finally, we reached a point where the structure of school and the level of medication simply couldn't contain his frustration with the world.  Self injury and threats to others became more and more serious, without letting up.  While scoring 100% on a test was good, refusal to show work resulted in rages that sent parents dropping everything, fleeing to his school to help get him out of the classroom and away from harming others.

Our small successful business was now completely suffering.  We cancelled appointments and jobs because there was no guarantee that we could keep up with those jobs and at the same time handle our son.  How do you commit to a project knowing at any moment, you may be called away to rush to the hospital or school?

At age 10, within our state, you can be arrested for aggravated assault.  Seeing an "in", our son was arrested twice in a 3 month period for assaulting a para-professional.  Now, it stopped being just about the medical expenses, the costs, and the fears.. the legal battle now surrounded us.  Lawyer costs.  More debt.  We had only contracted out work for the last year, I had to let all employees go at the beginning of the year (thanks GM for not ever paying your bill) and now, we had to see what would happen next.

Turned down prior for SSI/Medicaid, we returned to work with our advocacy services in our metro, members of the state Mental Health Services.  Surely, at this point, our son would qualify for the kind of help he would likely need.

Encouraged by a phone call and a conference with mental health professionals, a medicaid representative, and our treating practitioner, a decision was made: emergency psychological hospitalization for our son to get an evaluation would all but guarantee us medicaid status to help with our son.  We would be able to get an SED waiver, as it's called, to approve him for medicaid status.

Our son had never been away from us for more then a night or two.  Not since his birth, we have changed our life for our son.  After a lot of thought and quite a few tears, we agreed with the medicaid rep.  Our son was admitted.

It didn't take long. In a two week evaluation, our son received approval for medicaid.. so long as he would be institutionalized.  Medicaid would not approve outpatient care, at least not yet.   It turns out, to get that kind of medicaid approval, he would have to receive a different waiver, and be seen in a public office.  After being seen by the medicaid representative we visited with prior to his hospitalization, we received a "yeah, I guess that's true.. we can do that".  

Then, the bomb drops.  Our sons hospital stay?  $40k.   We've stayed in good touch with his hospital, two medicaid reps, a counselor, and an SSI rep.    We have a team meeting.  Yes, medicaid will cover the costs, which whew since they were the ones who told us we had to do it.. but we have to get out-patient approval first.  If we admit him to longterm care, medicaid will not cover.  

"Wait, wait" I say.. so medicaid will cover 100%, today, if we have him insititutionalized, right away "well, we'll cover everything going forward, but we won't cover that in the past.. no, strike that, we'd cover 1/2 of that".

"OK, what is the solution"  "ok, you need to qualify for outpatient care, and then we'll cover 100% of that past care at the psychiatric hospital."

And now it becomes a war of paperwork.  Tomorrow for us is D-day.  After a year of tens of thousands in costs, tomorrow decides what happens next.  The requirement to get out patient approval to pay past bills and a re-evaluation for his longterm care.

After working with the right counselors and services, we've found the right kind of facility where our son can be academically advanced at his own rate and be safe, and prevented from harming himself or others.  It's a great shot.

It's the solution we had always hoped would never have to happen, but it's also the best chance for him to live a full life and to keep our other child safe.

Tomorrow is the day.  Tomorrow isn't the day to determine if he can get care - thankfully, we know that will happen.

Tomorrow is the day for my wife and I to find out our future.  The right words from our reps won't change his healthcare.  Thankfully, we have a plan for his future healthcare that is assured.  The right words from our counselor instead tell us whether or not we will be forced into bankruptcy.  The right words make the difference.  The wrong words mean that for us, our lives will change.

For those that don't think that failures in US healthcare impact more then a few.. two years ago, we employed 3 full time employees.  Today none.  two years ago, we had healthcare.  Today, while we do, our son still is not guaranteed.

Tomorrow is d-day.  I am sick at my stomach for what comes next.  I have high hopes that whatever happens next helps our son live his life to the fullest.  That it gives our youngest son a chance at normalcy.  At times we feel selfish and ashamed.  But I'm hoping at the end of the week, I will not be waiving the white flag of surrender.

I believe in a country that holds open the opportunity for people to find help.  I believe that health care needs to, at it's best provide families with hope.

And until tomorrow afternoon, I will hold out all hopes that somewhere, somehow, the right things will happen.  

Originally posted to tmservo433 on Sun Jan 24, 2010 at 12:23 PM PST.

EMAIL TO A FRIEND X
Your Email has been sent.
You must add at least one tag to this diary before publishing it.

Add keywords that describe this diary. Separate multiple keywords with commas.
Tagging tips - Search For Tags - Browse For Tags

?

More Tagging tips:

A tag is a way to search for this diary. If someone is searching for "Barack Obama," is this a diary they'd be trying to find?

Use a person's full name, without any title. Senator Obama may become President Obama, and Michelle Obama might run for office.

If your diary covers an election or elected official, use election tags, which are generally the state abbreviation followed by the office. CA-01 is the first district House seat. CA-Sen covers both senate races. NY-GOV covers the New York governor's race.

Tags do not compound: that is, "education reform" is a completely different tag from "education". A tag like "reform" alone is probably not meaningful.

Consider if one or more of these tags fits your diary: Civil Rights, Community, Congress, Culture, Economy, Education, Elections, Energy, Environment, Health Care, International, Labor, Law, Media, Meta, National Security, Science, Transportation, or White House. If your diary is specific to a state, consider adding the state (California, Texas, etc). Keep in mind, though, that there are many wonderful and important diaries that don't fit in any of these tags. Don't worry if yours doesn't.

You can add a private note to this diary when hotlisting it:
Are you sure you want to remove this diary from your hotlist?
Are you sure you want to remove your recommendation? You can only recommend a diary once, so you will not be able to re-recommend it afterwards.
Rescue this diary, and add a note:
Are you sure you want to remove this diary from Rescue?
Choose where to republish this diary. The diary will be added to the queue for that group. Publish it from the queue to make it appear.

You must be a member of a group to use this feature.

Add a quick update to your diary without changing the diary itself:
Are you sure you want to remove this diary?
(The diary will be removed from the site and returned to your drafts for further editing.)
(The diary will be removed.)
Are you sure you want to save these changes to the published diary?

Comment Preferences

    •  I wish you all the best (27+ / 0-)

      Although my story is nothing like yours, I nod throughout it all. In July of 2006 I was the victim of a multi-car wreck caused by a tow truck's negligence. After a new business meeting, I left my potential client's offices happy and healthy. Within minutes, my ability to walk would be permanently limited.

      At the time, I was self-insured with combined premiums of $540. After surgery and hospitalization, my junk insurer paid out less than 10 cents on the dollar toward my medical claims. Three months later, my renewal notice arrived -- along with the news that they were tripling my premiums to north of $2k/month. Needless to say, I lost my insurance -- and, despite all of the above, I have been unable to buy into the Texas insurance risk-pool program due to a technicality about the insurance I had held before (Blue Cross deems that the policy wasn't comparable to the risk pool policy and that, apparently, is good enough for the state of Texas to tell me no).

      Nearly 4 years later, I still don't walk well, and Progressive, the insurer of the tow-truck company that caused the wreck, still refuses to pay, although they have admitted liability in both letter and verbally to various parties in the ongoing litigation.

      One day you're fine, and the next you find out that you're not. And that your insurance is crap. And that the other insurance parties involved are jackholes. Meantime, the bills wrack up, your ability to work the way you did before is compromised, and the only thing you can really count on is getting the stiffarm from what should be the financially responsible parties.

      All the best with your son. I wish him, you and your family all well!

      --Find me on Twitter at @mtownsel...

      by Melody Townsel on Sun Jan 24, 2010 at 12:50:26 PM PST

      [ Parent ]

      •  New bill will also treat people like that.. (2+ / 0-)
        Recommended by:
        Melody Townsel, wolfie1818

        Similar problems are happening in Massachusetts.

        stories from Massachusetts patients.

        Melody..

        "Needless to say, I lost my insurance -- and, despite all of the above, I have been unable to buy into the Texas insurance risk-pool program due to a technicality about the insurance I had held before (Blue Cross deems that the policy wasn't comparable to the risk pool policy and that, apparently, is good enough for the state of Texas to tell me no)."

        High risk pools need to be subsidized heavily (they are NOT self-sustaining, ever, thats a really bald faced lie) - they lose a lot of money, so even with 50% subsidies, they can cost twice what regular individual insurance does, and thats much more than most people can afford.

        So, they are unaffordable in many states, except to the upper middle class.. Despite millions of people needing them, they don't qualify for one reason or another.

        Thats I guess why the Senate feels that $5 billion dollars ($3.90 per American per year) will be enough to fund the national high risk pool for four years.. almost nobody will be eligible to join it.

        We really can, we MUST, do much better than the really still unaffordable unsustainable "reform" in the Senate bill.

        End Corporate Personhood! SCOTUS1886 Santa Clara County v.Southern Pacific Railroad was fraudulent!

        by Andiamo on Sun Jan 24, 2010 at 04:55:54 PM PST

        [ Parent ]

  •  Prayers for you and your wife and your children (21+ / 0-)

    I'm so, so sorry.  This system stinks.

    I'm sorry that I have nothing to offer that's substantive.  The best I can do is hope and pray for the best outcome for all of you, and that you all will be well, safe, healthy, and happy (and maybe extend a virtual hug) - but I offer those gladly.

    Be well, be strong, blessings for tomorrow, and please keep us updated.

  •  oh, tm (28+ / 0-)

    my heart aches for you.  I'm so sorry you have had such trauma from the system.

    You don't deserve it.  Nobody does.

    I wish I knew what to say.

    Earns no money here for blogging, commenting, or driving traffic to any web site.

    by mem from somerville on Sun Jan 24, 2010 at 12:33:57 PM PST

  •  I am so very sorry, (14+ / 0-)

    There are no other words. You will all be in my prayers tonight.

    Lisa

    All Kossacks are my allies.

    by Boston to Salem on Sun Jan 24, 2010 at 12:36:57 PM PST

  •  Have you contacted your Senator / Rep (15+ / 0-)

    The staff of the Senator or House member is supposed to help you with these government bureaucrats.  Also, you need a Social Security lawyer.  

  •  NY Sen. Gillibrand is a huge autism advocate (12+ / 0-)

    I hope you make sure she knows your story.

  •  Jeebus... (9+ / 0-)

    It's a wonder your family has held itself together through all of this. If nothing else, your son is lucky to have gotten himself born into your family.

    May tomorrow turn out to be a good day in all the right ways, even if it feels like the worst day.

  •  My thoughts go out to you and your family (9+ / 0-)

    I have one grandchild with autism and I know how hard her mother works to keep her on any kind of track.  If you combine all the other things you have to deal with into that mix, jeez, it would be over.  You have my sympathy and my respect for daily dealing with the problems that come with your son and the nightmarish deals with bureaucracy.  Like your child my grandchild comes with gifts and I love her dearly.  It should not be that your love has to lead you into bankruptcy in our cockamamie system.

  •  If I were you... (6+ / 0-)

    I'd try to move to another country like the UK or Canada that doesn't have the evil health system that we do within 10 years before the health insurance companies buy the congressmen and presidents they need to abolish Medicare/Medicaid.  The pure capitalism we're going to have in a decade is going to destroy the American middle class.

    "If Congress made it rain cookies, the headline would read 'Democrats Leave Millions Milkless'."- Jon Stewart

    by farleftloon on Sun Jan 24, 2010 at 01:13:23 PM PST

    •  Basically money.. (0+ / 0-)

      or skills.. are what enables people to do moves like that seamlessly.

      For a lot of people, its really a survival issue.. I don't think many people realize that the situation here is killing a LOT of people before their time.

      Politicians I am sure do realize it, but they don't seem to care about it the same way we do.

      End Corporate Personhood! SCOTUS1886 Santa Clara County v.Southern Pacific Railroad was fraudulent!

      by Andiamo on Sun Jan 24, 2010 at 07:35:25 PM PST

      [ Parent ]

  •  I'm so sorry to hear this (5+ / 0-)

    It is also a failure of the school system. It is frustrating that your school could not be more supportive and stop this insistence that he "show his work" or get marked down, for example. My sons have Asperger's/HFA and are also very good at math. They also get very frustrated at the "stupid" homework and the requirement to show your work and often get points taken off for not doing so. It's been a struggle to convince them that it's just part of the grade so you have to do it.

    They have not had the reactions that your son had, and it just frustrates me that your son couldn't have had access to a more progressive school. I read about one in Georgia that I wish there were more of:

    http://www.nytimes.com/...

    Students arrive at T.C.S. trailing long histories of school failure and humiliation, suspension, expulsion, truncated transcripts, social isolation, victimization, self-loathing, suicidal ideation or years of home-schooling patched together by mothers forced to leave their jobs. "On our first visit with Dave Nelson, Ty started screaming: ‘I hate this place! I want to leave right now!’ " Judy Martin says. "Most principals don’t want to work with a kid like that. But what I saw on Dave Nelson’s face was ‘I can work with a kid like this.’ "

    Many prospective parents begin to weep during their intake interviews with Nelson. For them and their children, this place represents something of a last chance.

    They also work with kids who have psychological concerns.

    It's frustrating because your son has so much potential, as I am sure you know, and you're being forced to play by rules made for non-Autistic people in hospitalizing your son.

    I hope everything will be okay. Good luck and thank you for sharing your story. It really emphasizes how important it would be if only one thing passed in the health insurance bill: nondiscrimination for pre-existing conditions.

    That alone would help so many people.

    Supporting a Pragmatic Approach to Progressive Policies

    by CatM on Sun Jan 24, 2010 at 01:20:49 PM PST

    •  Agreed (12+ / 0-)

      He's 10 and does calculus in his head.  They love it when he takes the state tests (NCLB) because so far, he's been perfect.. he anchors the results for his class... and his reading skills also tower above his classmates.

      We feel very fortunate in that the long term care facility we've found and have pushed for acceptance into has programs geared for autistic children like him and will allow him to excel.  

      But you're right.. when we started, we had to fight hard to get the right kind of care.  His self-harming behaviors/violent aggression are significant, but the desire to place him in what equates to homes for the mentally retarded was simply unacceptable.

      I'm very glad we've found a facility that we think can help him grow academically and work with him on the social skills and frustration he feels.

      He will always be my champion.  He'll always be my son.  And I'll always be there fighting for what's best for him.

      •  I missed the part (4+ / 0-)

        about finding the facility. I'm glad that you have found that, too.

        I get so frustrated at the inability of the school system to understand that autistic people think differently and would do much better if the schools did not try to force them into approaching academic tasks from an eurotypical perspective.

        My kids, for example, struggle with literature and understanding questions like, "Why did Sam cry?" unless the book says, "Sam cried because..." They need basic in struction in how to recognize the verbal cues in the book because they cannot rely on their own intuition. Somehow I picked up on that growing up (probably because I read so many books), so I'm good at interpreting literature, but they haven't mastered it.

        I also understand your statements about him always being your son. I once had someone tell me how sorry they were when they found out my kids had been diagnosed with Asperger's. I couldn't understand that. They were the same kids they were before the diagnosis and I loved them just as much. I'm sorry that they have some of the struggles they do, but I'm not at all sorry to have them.

        You sound like a great dad, and it's wonderful that you recognize how talented and amazing your son is.

        Supporting a Pragmatic Approach to Progressive Policies

        by CatM on Sun Jan 24, 2010 at 01:46:18 PM PST

        [ Parent ]

    •  Have you tried to tell your children (1+ / 0-)
      Recommended by:
      ladybug53

      that in the real world they have to "show their work"? What plans do you have for them to ease their transition into college and adulthood?

      •  It's complicated (4+ / 0-)

        They are both autistic but they are also very different from one another.

        They are pretty rules-oriented, however, and I explained to them that sometimes people have rules we have to follow to get the reward that we need. Like, sometimes I have to do things at work I don't agree with but if I don't do them, then I don't get paid, and I can't afford our home, so we just have to follow the rules. To get the grade, they have to show their work.

        One son is better with that, the other one has oppositional defiance disorder and you often have to convince him to see from his own perspective why something is the right thing to do before he will agree to do it. It can be difficult. He's not very motivated by grades or the idea of a good school.

        His brother wants to go to MIT like his father (who majored in mathematics and is also autistic), so grades really motivate him.

        We haven't really figured out plans yet. There's a university I know of that has a special program to help kids with autism succeed in college, and I'm hopeful that will be one option. With my youngest, I don't know if he'll live independently. It's hard to imagine right now because he seems like he lives in his own bubble and just kind of floats around through the world, with his bubble sometimes intersecting with other people. It's like he doesn't understand the "reality" of the world, of consequences and things.

        I will probably end up moving to wherever he wants to go to college so I can help him get through it if he doesn't mature before then.

        My middle one (the one who wants to go to MIT) is very independent and always wants to do things on his own, and I think he can get by with a support program to remind him to do his homework.

        Supporting a Pragmatic Approach to Progressive Policies

        by CatM on Sun Jan 24, 2010 at 01:41:01 PM PST

        [ Parent ]

        •  Thanks for that (6+ / 0-)

          Sometimes it is very difficult because each child is so different.

          Showing work is something that is very difficult to get across to many because the answer just comes so easy.. and on the standardized tests (like NCLB) they don't need to show the work, as long as they can provide the right answer, that's all that matters.  Which tends to reward that behavior we're all looking to correct.

          I wish you all the success in the world.  Somehow, we all find a way.. that's at least a real positive.

  •  Blessings to you & your family n/t (4+ / 0-)

    Torture: An act... specifically intended to inflict severe physical or mental pain or suffering upon another person within his custody or physical control.

    by MsGrin on Sun Jan 24, 2010 at 01:21:25 PM PST

  •  Why I told my story (16+ / 0-)

    I just wanted to add, without changing my diary (I corrected a few typos) that the big reasons for this diary were:

    I'm pretty blue today,and we haven't talked about this with others outside of family, and now that we know what happens this week, I'm already having the empty-nest feeling for my son.. and a the same time, I'm frankly scared financially at I'm struggling with how to reconcile the two.

    But also because we keep running into people who say things like "well, most of the time this goes smoother then this".  I'm betting it doesn't.  I'm betting a lot of people get into the same boat that we are in, and while we had resources to fight for this to go what we feel is the "right way", I know a lot of people don't.  

    There are lots of people out there who need help/support.  I'm hoping someone else sees how the system works and can find new motivation to help change it.  

    •  May it go smoothly tomorrow (3+ / 0-)
      Recommended by:
      CatM, Kitsap River, ladybug53

      and improve from here on out.  Hang tight.  Of course you're blue with all of this going on - you've stayed with it more gracefully than most can.

      Torture: An act... specifically intended to inflict severe physical or mental pain or suffering upon another person within his custody or physical control.

      by MsGrin on Sun Jan 24, 2010 at 01:25:37 PM PST

      [ Parent ]

    •  Thank you. (5+ / 0-)

      To my mind, there's no need to justify why you posted this; that you felt that you needed to do it is enough.  But I do think it's admirable that you're willing to put your own pain out there so that perhaps others can learn from it, or so that it can help them in some way.

      In my experience, "people who say things like 'well, most of the time this goes smoother then this'" generally have no idea what they're talking about (although they mean well), and that "betting it doesn't" is usually far more practical.  We've been going through that (with different issues from yours, life-altering but not nearly so heartbreaking), and I've spent a good share of the last year-plus understanding what it means to feel utterly desperate with nowhere to turn.  I was feeling rather brokenhearted today, and then I read your diary, and my heart broke all over again for you, your son, your family - which reminded me that I don't have it as bad as I thought after all.  So thank you for giving me an apparently much-needed kick in the ass.

      And, again, I'll be hoping for the best of outcomes for all of you on all fronts.

    •  They're wrong about it being "easy" (7+ / 0-)

      Many conservative friends of mine tell me with a straight face that "it's so easy to get disability and SSI". They bring up stories of people they know third-hand who get benefits but who are physically able to work.

      Yet I have a friend, a former veteran of the Vietnam War, who has had a whole variety of health problems. About a couple years ago it became clear that he couldn't work full-time as much as he used to. He applied for SSI but received a denial the first time. The woman on the phone explained that while he couldn't work in his field anymore most likely, "he could still work at McDonald's." He eventually qualified for benefits but it took a round of appelas to do.

      The criteria to qualify for SSI are so stringent and narrowly-tailored that you could literally be in a wheelchair, suffer from multiple disabilities, and clearly be unable to work but still be denied benefits. It's very hard qualifying for it.

      •  I have a friend (3+ / 0-)

        who was bemoaning people like my niece who are on ssi with a child and so they receive what she feels is a kings ransome.  My response was to ask her who would hire these people?  Employers don't want to pay the health care premiums for those who need extra health care.  My neice has no front teeth.  Who would hire a mildly retarded girl with mental health issues and no front teeth?  Now, if we had universal, single payer, these people could have at least part time jobs.  Many employers would hire the disadvantaged if they just had to worry about a simple pay check for them.

      •  The hell it is!! (1+ / 0-)
        Recommended by:
        Charles CurtisStanley

        Even with ESRD and dialysis, which is supposed to be an "automatic in", I still had to get and go through a hearing in front of an administrative judge. Finally, we won. It had been three years since I first applied and almost five since I'd been disabled, but I still only got a back award for a year and a half.

        I have a friend who has a friend who is completely blind and uses a guide dog, and she was still denied the first time.

        The first time I applied, I was told that even with my multiple disabilities (which included everything but the kidney disease that led to kidney failure), I could work for $800 a month and that was enough to live on. In what state, I have no idea; in this one, it sure as hell is not.

        The woman on the phone with your friend has the typical attitude of the people in charge of making sure other people are denied benefits. There is nothing easy about applying for or getting approved for SSDI, no matter how disabled you are.

        Living kidney donor needed; type B, O, or incompatible (with paired donation). Drop me a note (see profile).

        by Kitsap River on Sun Jan 24, 2010 at 05:34:34 PM PST

        [ Parent ]

    •  I don't know anyone (6+ / 0-)

      where anything dealing with state or federal aid goes smoothly.  In my own case my son, schizophrenic, was arrested and imprisoned.  When he was released he had dual coverage, medicare and medicaid.  That was pretty easy for me except for the 3 yrs of jail time and state mental health institution.  The real criminality being that people have to be imprisoned to get help.

    •  I know it's not quite the same (3+ / 0-)
      Recommended by:
      Kitsap River, denise b, ladybug53

      But my father has been legally blind from birth, with 10% vision in one eye and 0% in the other. He was 3 months premature and was placed in an oxygenated incubator for a year, which fried his optic nerves. He has bands of tissue that go across his eye and his cornea is almost pointed and pushes out underneath these bands. Every doctor he's ever seen said there's no way this could ever be fixed. They don't know why he can see anything.

      He worked for awhile when he was younger, so he collects Social Security Disability instead of SSI.

      Despite the fact that he's been legally blind from birth, he still has to go every few years for yet another exam with yet another specialist to prove that he still qualifies for disability.

      They should not make it such an ordeal for people who obviously need help. Why should your son have to go as an inpatient? What can that tell them that they cannot learn with him as an outpatient? It makes no sense.

      Supporting a Pragmatic Approach to Progressive Policies

      by CatM on Sun Jan 24, 2010 at 01:56:50 PM PST

      [ Parent ]

  •  Good luck (5+ / 0-)

    I am sorry to hear about your difficulties with your child. I am hoping that he can find the resources to eventually be a productive member of society.

    But what angers me is that, if the polls are to be believed, 30-40% of the public believes that it's perfectly fine if you end up in financial ruin. And you're not poor. You and your wife have worked hard and played by the rules. You just had the unfortunate luck of being parents to a problem child with medical challenges that the system seems equipped to handle.

    •  Thats not true.. Thats right wing propaganda (0+ / 0-)

      "But what angers me is that, if the polls are to be believed, 30-40% of the public believes that it's perfectly fine if you end up in financial ruin."

      Obviously, the people of Massachusetts didn't want any more 20-45% premium hikes.. thats completely unsustainable..

      They're covering that up.

      2 out of 3 Americans of both parties DO want Canadian-style Medicare for ALL..

      End Corporate Personhood! SCOTUS1886 Santa Clara County v.Southern Pacific Railroad was fraudulent!

      by Andiamo on Sun Jan 24, 2010 at 05:01:56 PM PST

      [ Parent ]

      •  But it helps people feel "OK" with it (1+ / 0-)
        Recommended by:
        Kitsap River

        You'll find a lot of sympathy but not a lot of action. And the reason why that happens is because it's a lot easier to say "it's just the way it is" if you believe most other people are also apathetic.

        It's easier then feeling the need to change things.  It's just to easy to believe "it will never happen to me" and assume those it happens to did "something wrong" or that it's their fault.. rather then try to change the system.

      •  That's before you start polling deeper (0+ / 0-)

        into it. When the same people find out that they may have to pay higher taxes support drops. And frankly, if the public truly supported Canadian-sytle healthcare to that extent, the right wing ads that aired all last year and the fears of the "death panels" wouldn't have convinced anyone.

  •  I'm not sure which state (4+ / 0-)
    Recommended by:
    bronte17, Kitsap River, ladybug53, Aji

    you live in. NH just passed a law that insurance carriers are required to cover early intervention for autism. But that doesn't applied to companies (and the state itself) that self-insure.

    It's really, really tough. My son has disabilities. He will require assistance and supports. Now I have to fight tooth and nail for the school to serve him. Then comes voc-rehab, then SSI and all that other fun stuff.

    It shows what our society values. Entertainment. Nothing else.

    I wish you well with your struggles and wish our society were different. That's why I spend my life tilting at windmills, or so it seems.

  •  Good luck! n/t (1+ / 0-)
    Recommended by:
    Kitsap River

    "The kid in the combat gear is dead because the men in the suits failed."-me

    by porchdog1961 on Sun Jan 24, 2010 at 01:56:02 PM PST

  •  I am praying (3+ / 0-)

    things go well for you with this.  I'm another victim of the health care system (a financial victim - bankruptcy due to being self employed and $1500 a month premiums with junk insurance), and though things have improved for us on that front, I'm helping a friend battle cancer with Medicaid that won't allow him to get the best treatments that might save his life.

    We don't count.  We matter only as consumers and a means to an end for the ruling class.  We are the only ones who can change that; it won't come from our elected reps because they work for someone else.  

    "Never trust a rich man when he offers you a truce."

    by KibbutzAmiad on Sun Jan 24, 2010 at 01:58:33 PM PST

    •  Yeah, notice how (2+ / 0-)

      we are called "health care consumers" these days, not "patients". I still think I have a doctor-patient relationship with my physicians and the dialysis nurse, not a "consumer-provider" relationship. And I know of no law that protects a "consumer-provider" relationship the way a "doctor-patient" relationship or an "attorney-client" relationship is protected. We have GOT to change the language back.

      Living kidney donor needed; type B, O, or incompatible (with paired donation). Drop me a note (see profile).

      by Kitsap River on Sun Jan 24, 2010 at 05:39:28 PM PST

      [ Parent ]

  •  The best of luck to you- (1+ / 0-)
    Recommended by:
    ladybug53

    and I do mean it.

    The people who protest against healthcare reform-and do their best to block its passage truly do need to be ashamed of themselves.

    I have no patience or considration for people like this.

    Frankly-they are a selfish, miserable, disgrace to all of us-and if they just packed up and left I would not miss any of them or mourn their absence.

    I hope things turn out well for you and for your son.

    Let us know-please.

    On political conservatives: "I was so shocked I nearly dropped the Bible I was using to help me masturbate into my gun." Bill Maher

    by lyvwyr101 on Sun Jan 24, 2010 at 02:06:24 PM PST

  •  You have my prayers (1+ / 0-)
    Recommended by:
    Kitsap River

    and best wishes.  No one should have to suffer those kinds of trials in addition to having an ill child.  It's not fair or humane.  I'm ashamed of this country...

    -7.62, -7.28 "Hold fast to dreams, for if dreams die, life is a broken winged bird that cannot fly." -Langston Hughes

    by luckylizard on Sun Jan 24, 2010 at 05:03:18 PM PST

Subscribe or Donate to support Daily Kos.

Click here for the mobile view of the site