The Fight for Adequate Mental Health Care

To me, the only thing worse than seeing a loved one suffering from a severe disorder is seeing a loved one suffering from a severe disorder that you know is treatable. There are many reasons why those with obsessive-compulsive disorder might not seek treatment, including lack of motivation, fear of therapy, or even fear of getting well.

But perhaps the most heartbreaking reason has nothing to do with fear or motivation; it has to do with money. Those without adequate healthcare coverage who cannot afford treatment have few, if any, options. They may be willing to work toward recovery from OCD, but the necessary resources are out of their reach.

I am not the least bit savvy when it comes to politics, but I know right from wrong.  David Shern, Ph.D., president and CEO of Mental Health America, is urging Congress to reject the proposed Fiscal Year 2013 Budget Resolution. He says, in part:

“Such deep cuts would imperil our public health system and further exacerbate the problems mental health systems are experiencing, given that states have cut mental health agency budgets by a combined total of nearly $4 billion over the last three fiscal years, the largest reduction in mental health spending since the 1960s.”

Dr. Shern talks of other ramifications of this resolution, and I find them all frightening. Millions of Americans, many of them children, would be at risk of not receiving adequate mental health care.

I can’t help thinking back to when our son Dan was battling severe OCD. We floundered and fought our way through a disorienting maze of treatments and programs, desperately trying to find the best help for our son. And when we finally found the right treatment and the right therapist for him, he got better. We were lucky to have health insurance that covered a good portion of his therapy, and were able to pay for the rest. I can’t even begin to imagine what it would have felt like if we had known there was a way for our son to recover, but no way for us to afford the appropriate treatment.

Yet this is the reality for many people. OCD sufferers who want treatment, and parents who want to help their children, are left hanging, with nowhere to turn.  And the longer those with OCD go without therapy, the harder they are to treat. It’s heartbreaking, and it’s wrong. I think it’s finally time for me to get involved in politics.

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13 Responses to The Fight for Adequate Mental Health Care

  1. You are so right. That money stands in the way of some people getting treatment is heartbreaking and, in my opinion, wrong.

    I am fortunate enough to have health insurance. If I didn’t, I would have a difficult time affording all the bills connected to treatment: doctor’s fees, therapist’s fees, medication.

    That people even have to consider paying for either health care or some other essential is wrong.

    I think mental health care is not difficult for many politicians to cut because a lot of the suffering goes on behind closed doors. I would say that a large portion of the population don’t see the need for such care, thinking that only a few, relatively speaking, are in need of it.

    Thank you for bringing up this topic. I need to get more involved too.

    • I really couldn’t agree with you more, Tina. When discussing health care, mental health is usually put on the back burner because it’s rarely brought into the public view, and when it is, it’s usually under negative circumstances. And for those suffering from mental health issues, the last thing they need is to be passed around from doctor to doctor, bill after bill, without seeing any improvement or answers. Hopefully, most young adults can stay on with their parent’s until they are 26 and/or can seek coverage through an employer, but unfortunately not everyone is so lucky.

  2. ocdtalk says:

    Thanks for your insight, Tina. Yes, so much suffering behind closed doors. Another reason to continue to advocate for OCD awareness!

  3. 71 & Sunny says:

    This makes me so sad. Thankfully I have good coverage now, so I was able to get all the help I needed these last few years.

    The first time I went to therapy many, many years ago (it wasn’t CBT), the insurance company gave me and my therapist such a hard time that I eventually went to bi-weekly therapy and just paid the whole thing myself. I seem to recall they were only paying about half anyway, so it didn’t cost me much more, I just got less treatment.

    I honestly don’t know what I would have done these last few years if I could not have gotten CBT treatment.

    I notice you have the Peace of Mind foundation listed under your resources. I believe they may offer some scholarships for treatment. At least they previously did.

  4. ocdtalk says:

    Thanks for the comment, Sunny. I do remember hearing that about POM ….not sure if they still offer monetary assistance or not. I feel lucky that we have health insurance also, and are able to pay what insurance doesn’t cover.

  5. As you know, my 12 1/2 yr. old daughter has debilitating OCD. Over these many years, she and I have traversed the matrix of therapists and psych wards which were reimbursed through her insurance policies. Due to either ineptitude or lack of training and skills, none has been successful in treating her OCD. Duke’s Child and Adolescent OCD/ CBET Program were the last to declare her “untreatable” at this time.
    In desperate attempts to find her proper care, I went directly to the 2 foremost leaders in this field, Michael Jenike from Harvard and John March whose a Professor of Psychiatry and Chief of Child and Adolescent Psychiatry at Duke University Medical Center. Since her Y_BOCS scores consistently remain at the Extreme range of 38-40, they both advised she be treated at an in-patient facility but, for now and after, one of the most accomplished, highly trained, experts in treating extremely afflicted children with OCD lived in a neighboring city. I was ecstatic! I actually cried tears of joy. Finally, after almost 9 yrs. of Living Hell, we were finally on the right course for proper treatment. The last thing on my mind was paying for the services. Although I have a disability which leaves us without very little money, my daughter has 2 insurance policies, BCBS and Medicaid.
    To my horror, I first found out that this “heavenly sent” therapist, to be, does not accept insurance. It’s cash only. Now, I was back to tears but tears of years of pain and helplessness not joy. Paying out of pocket was not even a possibility. After much discussion, this potential miracle worker agreed to accept both of my daughter’s insurance policies. I could have given her a huge kiss. Again, I wept tears of joy! Finally, I thought, she is going to begin to get help the help she so desperately needs and deserves. I, then, contacted both insurance providers, pled her case and was swiftly refused of any coverage through both BCBS and Medicaid.
    I then contacted the top two of only three OCD in-patient facilities in the country regarding payment for services. The results were shocking, BCBS refused to provide any coverage as, again, they are out of there network and Medicaid from our home state of NC is not accepted. The hospitals only accept their states Medicaid! To add insult to misery, since both hospitals are great distances out of state, the costs of transportation there and back, mother’s room and board while there, etc. are completely cost prohibitive on their own! Neither facilities offer a Ronald McDonald House for families.
    When I questioned Dr. John March about my inability to attain proper treatment for my daughter he stated, “…I am sorry to have to be the bearer of hard news—I wouldn’t organize services for kids that way if it was up to me—but just about everyone in the specialty clinical framework is out of network and no one accepts Medicaid.” This is the reality in which we all live. Children in peril, suffering with illnesses are being ignored. Ignored, that is, if they don’t happen to be fortunate enough to have the “right” insurance coverage or loved ones with money.
    In a desperate attempt to get her help, I’ve just posted her story on the GiveForward.com website. This company was featured, last week, on CNN and I thought, perhaps, it can be possible to begin her in-patient intensive therapy if even for a short time. Her story can be found at http://www.giveforward.com/alexandrasocd.
    Thank you so much for your blog. The more we are all aware, the more we can do together to make the necessary changes in legislation and policies which will protect these children from being forgotten.
    Sincerely, Lisa

  6. ocdtalk says:

    I am so sorry to hear of all your roadblocks Lisa, and your family’s story is heartbreaking. This is all so wrong. I hope GiveForward works for you so that Alexandra can begin to get help. Good luck and please keep me posted.

  7. postpartumandpigtails says:

    I completely agree. After going through Postpartum Anxiety & Postpartum OCD, I tried everything to figure out what was going on with me & how to “get rid” of it & I saw many, many different doctors.

    I ran around in circles for almost 3 years before finding someone who correctly diagnosed me & was able to get the help I (& so many others) truly deserve.

    Thanks for sharing this!

    • ocdtalk says:

      Thanks for commenting…..way too many people suffer for way too long; hopefully, continuing to advocate for awareness of OCD and other disorders can help change this.

  8. B. Louise says:

    This is just awful for so many people. My son went to one of the best inpatient ocd hospitals in the country. We used our retirement for the air fare and copays! His ocd was so bad he could hardly do anything, and when we got there, he was full of hope and doing more things than he had in years! Then within two weeks we were told he had to come home, because he wasn’t ready???? His therapist felt that going after his number one fear right away would help him, my son just was too afraid to tackle that right off the bat. My son made it clear to them that he felt he could do the therapy as long as it was in a slow progressive way, they assured him that they would. That didn’t happen, so we had to go and get him! I am still disheartened and disgusted with the whole ordeal, and spending all that money!!
    I explained that there just wasn’t anyone where we live that could give him proper treatment, and we had already spent thousands out of pocket, they didn’t listen—-so here we are, out thousands of dollars and our son is not one bit better off!
    Their ” after care” for when he got home was a therapist here that will not do home visits or take insurance—same old run around as before!
    So, ask tons of questions before you send your loved one to these places—-it will cost you lots of money, and in the end, they seem to blame the patient if they can’t help them.
    I just hope and pray that eventually mental health will be available to more people, with or without lots of money!

  9. ocdtalk says:

    B. Louise, Thank you for sharing your story. It breaks my heart. Unfortunately I have heard variations of what you’ve reported way too many times, and my next post actually touches on this issue. I so hope you are able to find the help for your son that he deserves. I’m thinking of you!

    • B. Louise says:

      Thank you so much, right now I am sitting here heart broken, and my son has been in his bed the last two days! He never used to do that—it seems his ocd is getting worse, he used to be able to go out in public and act perfectly normal, but now he is having a harder time of even doing that.
      The therapists here, say he needs inpatient care (severe ocd, germ phobia), and the Dr.’s at inpatient say he needs a proper out patient therapist. Our insurance only pays for Inpatient—which is better than nothing, and we still have large co-pays!
      My heart goes out to all of you that have not only a love one with this devastating disorder, but can not even find the right therapists, or if you do, you can not afford the treatments!!
      Thanks for listening—this has been really frustrating—-
      Five years and counting of pain!

  10. ocdtalk says:

    B. Louise, I don’t know which program your son was in, but have you looked into others? If he was there and was willing to do the work and move forward, even slowly, then maybe he might benefit from another program? If you feel like “talking” at all, feel free to email me at ocdtalk@yahoo.com.

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