"Something really needs to be done about our mental health system..."

It is so complicated and no one solution would work for everyone.
My Mother was a schizophrenic and then developed early onset dementia.
It was not until I was able to obtain legal guardianship of her that she became medicated.

When people ask me what I would do if I won the lottery and didn't "have" to work, my response is I would become an advocate for mental health care reform.

Prior to my guardianship was 10 years of battling the system and Mother. Mother was violent, abusive, prone to fits of rage and an extreme hoarder. She became homeless at 68 years of age, not because she couldn't pay the rent but because she scared her neighbors, she hoarded and she was just plain crazy. Her senior apartment complex for folks with disabilities and fixed incomes (subsidized by the Gov't) was able to evict her knowing she had no backup plan, nowhere to go etc. They evicted her, then her "senior advocate" from another state agency Adult Protective Services, drove her two hours and dropped her at a woman's homeless shelter (this was all unbeknownst to me because legally they couldn't inform me since I had no rights) this was a shelter that she could not stay in during the day, she had to leave and then come back. She was 68 years old, no longer knew how to use a payphone, was in a strange city, had nowhere to go and was told to leave and come back in 12 hours. She had been forcibly removed from her apartment and all her belongings. She had the clothes on her back, her purse and coat. This was in Oregon at the end of November, it was cold.

Oh Man, just typing this makes me so angry and its been about 10 years since this happened. I was able to track her down only to find that the woman's shelter kicked her out via the Sheriff because someone tried to take her shoes and she reacted violently. The Sheriff dropped her at an emergency room and that is where the final pieces went together and I was able to seek guardianship.
Now, how in any way is this logical to anyone? I had tried every resource, consulted with an attorney etc. I am of sound mind with an education, resources and a very supportive spouse. I cannot imagine a mentally ill person trying to navigate this alone.

Often, mentally ill folks have exhausted and alienated their families. We were lucky, I am very strong willed and didn't have an emotional attachment to mother so dealing with her was not traumatic to Me. I also had my Brother and my Auntie who, when I couldn't take another second of her crap, would step in. We used this revolving family method for many years.

Mother refused medication - you see, mentally ill people don't see anything wrong with themselves, its all us who are abnormal.
Mother refused medical intervention, she refused everything we could come up with to help her and the law was on her side - this is where I think we could start. When someone is so obviously suffering, there has got to be a way for a family/friends/Dr. to get a person help and yes, to force care/meds if needed.

We as a country spend sooooo much money on our criminals and sooooo little on mental health, its just sickening. Let the prisoners live in squalor with bologna 3x's a day and get the folks who need mental health treatment the help they need.

Give Families/Friends the ability to intervene, allow families to truly help, not just run around behind the person cleaning up the mess.
This is exhausting and its no wonder such a large % of our homeless population is mentally ill.

Goofy_Disney_Dad said:

I just don't know if I have it in me to debate the subject these days. You and I are on the same page on this one though. The legal and medical issues alone are mind blowing if you are truly in the know.

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My husband's uncle was diagnosed paranoid schizophrenic in the 1950's. He spent a great deal of time in a private mental hospital. Uncle R. was released from time to time and did well. He had a 24 hour "companion". Because he was diagnosed at that time, had an established relationship with a psychiatrist, the "sanitarium", and lots of money, DH's family never had a problem having him committed when it was needed.

My uncle G., on the other hand, was diagnosed paranoid schizophrenic about 1980 which was obviously after 1965 when states were given incentives to move the mentally ill out of hospitals and into nursing homes or general hospitals because Medicaid did not provide coverage for mental illnesses. His family did not have the means to pay for a private hospital. When he became violent, he was hospitalized and was always out in 72 hours. The staff at the public mental health facilities either didn't have the proper time and/or the inclination not to mention the money to seriously look into this man's problems. G's family did not want to have him arrested because they knew he'd be thrown into prison. They kept hoping for the miracle drug or treatment that would help him.

I want to touch on the medication issue a bit. They can now do a blood test that can tell which medications will work for people with mental illness. I don't know how much it costs, but it is finally here. Hopefully, the future will hold that people can get this test when they come in for a 72 hour hold. And yes, I got this info from a psychiatrist.
The 72 hour hold is a joke. My mil is mentally ill, tried to take her life and nearly succeeded in July 2014. She was in the regular hospital for 4 and a half days (restrained ) then was moved to the psych ward for her 72 hour hold. She refused to eat and take her meds and was extremely angry when they decided to let her out, her 72 hours were up.
My home state of Iowa just closed 3 mental health hospitals on the governor's orders. He was cutting the budget, thought they could get the same care in regular hospitals and nursing homes. I have several relatives that work in the health fields, even mental health fields in Iowa, and they can not disagree more with the governor. They are going backwards in Iowa.

Another problem is insurance. Mental health is treated by insurance companies differently. Insurance companies have a larger say in patient treatment than the patients doctor.

Even when a patient is lucky enough to find treatment, insurance limits how many visits are allowed and how long a patient can stay in a hospital. Often times prolonged care is needed and just because a patient has stabilized for one day does not mean they should be discharged.

"I want to touch on the medication issue a bit. They can now do a blood test that can tell which medications will work for people with mental illness. I don't know how much it costs, but it is finally here. Hopefully, the future will hold that people can get this test when they come in for a 72 hour hold. And yes, I got this info from a psychiatrist."

Usual price is $3800 per test, and you normally need two of them. It's a full karyotype, a DNA profile. At this point, it is designed for antidepressants and antianxiety meds, not antipsychotics, so it's probable that it won't be much use for folks who are in involuntary-hold situations. (Also, it is primarily designed to anticipate adverse reactions, which does save time and money in terms of not bothering to try things that are likely to make you sick, but that doesn't tell you so much what WILL work, but what won't.)

Most insurance companies won't pay for this kind of testing for this purpose. I had it done a few years ago when I had recurrent miscarriages, and it was a major battle getting it approved. I think it would depend heavily on what was in the company's Rx formulary: if you could prove that you were saving them the cost of high-priced medication trial and error, you might be able to get the test paid for, but a lot of companies won't cover the most expensive meds anyway. It takes a lot of trial and error to amount to $3800 wasted.

cabanafrau said:

That's sad. And unfortunately it's a situation that may come to a very sudden halt, which would be very, very traumatic for the patient. There is a large crackdown taking place regarding the go to treatment commonly used in these cases because of the widespread epidemic of substance abuse. The doctor's hand may be forced at any time.

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Are you able to elaborate? What types of drugs are you talking about? Someone close to me is on GP-prescribed meds for depression. The condition is being referred to as a "chemical imbalance" and frankly, I've seen a great deal of difference in this person's countenance and behaviour since being on the pills although there was never any psychiatric evaluation or diagnosis beyond the family doctor.

A long way to go...tho on the positive side at least recent legislation has mandated mental health coverage where it wasn't before...

My question how do you determine mental health verses just pure evil. Is there a fine line are they total opposites or do they go hand in hand.

3forme said:

Another problem is insurance. Mental health is treated by insurance companies differently. Insurance companies have a larger say in patient treatment than the patients doctor.

Even when a patient is lucky enough to find treatment, insurance limits how many visits are allowed and how long a patient can stay in a hospital. Often times prolonged care is needed and just because a patient has stabilized for one day does not mean they should be discharged.

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Something I feel I need to point out. Insurance does not limit anything in your health care. You are free to go to any doctor you want and you can receive any treatment that your doctor prescribes. What insurance limits is what they will pay for. Just because your insurance will not pay for a treatment does not mean you can't have it. It just means that you'll have to find another way to pay for it.

People seem to think that because insurance won't cover it, they can't get the treatment/prescription/whatever and that is simply not true.

And this leads to the true problem (on the finance side) with health care. The COST of health care. Recent reforms did nothing about the COST of health care. It only addressed who pays for it.

DizBelle said:

Something I feel I need to point out. Insurance does not limit anything in your health care. You are free to go to any doctor you want and you can receive any treatment that your doctor prescribes. What insurance limits is what they will pay for. Just because your insurance will not pay for a treatment does not mean you can't have it. It just means that you'll have to find another way to pay for it.

People seem to think that because insurance won't cover it, they can't get the treatment/prescription/whatever and that is simply not true.

And this leads to the true problem (on the finance side) with health care. The COST of health care. Recent reforms did nothing about the COST of health care. It only addressed who pays for it.

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This is very true, however I will point out from my own experience. Due to severe mental illness, Mother never held down a job, her only source of income (post my parents divorce) was social security disability. This gave her very limited funds to work with. Mental health care is expensive and for many who suffer from mental illness the ability to self fund treatment is way beyond their means.

Like everyone, I think there are many things that need to change and be looked at. The three biggest things I see, which I think would make the most difference are:

1. Affordability of care. Many, many people simply cannot afford counseling/therapy and even those who can, it is often not covered and it so costly that they opt for medication but not the therapy which I feel is essential to go along with it. In-patient care is even harder to afford and always seen as a serious "last result" in the US for only the worst cases, instead of being an affordable safe place for someone to choose as a way of getting back on track and as a step towards stability and then out patient care.

2. Over reliance on medication alone. I think 80% of the time, the best help is either short term medicine usage combined with long term therapy or therapy alone (but very often short term meds are hugely beneficial--I liken it to strong pain medication that helps someone get through while they get started in PT and eventually the PT can be done with less and less medication and hopefully eventually not be needed at all anymore). And I think 100% of the time psychotropic medication should be combined with regular therapy.

3. This one is not so much about our mental health system changing as it is about our society as a whole changing. As Tina posted upthread, we have become far too obsessed with violence in a very unhealthy way which I simply do not see in many other places and along with that we are obsessed with "justice" in the way of wanting to punish people for any and every infraction (and often it is all or nothing, either we ignore something altogether and say it is no big deal, or it is a life altering mistake-we have long ago dropped the middle ground out when looking at any number of issues here). We need to stop glorifying violence and also stop glorifying "control/punishment" ways of thinking and work towards teaching the next generation kindness, compassion, violence as a last resort which one should prefer to avoid, and focus more on prevention, rehabilitation and reasonable consequences, rather than on arbitrary punishment.

DizBelle said:

Something I feel I need to point out. Insurance does not limit anything in your health care. You are free to go to any doctor you want and you can receive any treatment that your doctor prescribes. What insurance limits is what they will pay for. Just because your insurance will not pay for a treatment does not mean you can't have it. It just means that you'll have to find another way to pay for it.

People seem to think that because insurance won't cover it, they can't get the treatment/prescription/whatever and that is simply not true.

And this leads to the true problem (on the finance side) with health care. The COST of health care. Recent reforms did nothing about the COST of health care. It only addressed who pays for it.

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Well, yes, but that's a bit disingenuous. If you have untreated severe mental health issues, sooner or later you are going to start losing the ability to make a living, if you ever had that ability. You can't pay for something with money you don't have, no matter how "affordable" it might be. The truth is that therapy with a psychologist or clinical social worker is usually not very expensive; normally much less expensive than antidepressants. Still, insurance usually won't cover therapy, mostly because it has a stigma of malingering. The meds are the really expensive part, but somehow those almost always get covered.

The reality for the vast majority of folks who suffer from mental illnesses is that if you don't have insurance to cover it, you don't get treatment unless you end up getting "lucky" and getting it via the prison system.

Mizzoufan said:

My question how do you determine mental health verses just pure evil. Is there a fine line are they total opposites or do they go hand in hand.

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That really depends on your perspective. I'm kind of a "biology" believer. I'm not sure that I believe in "pure evil." I actually believe that really evil acts are committed by people who are not right in the head. So pure evil to me is a form of mental illness at its worst. But I'm actually still not 100% on that.

mamacatnv said:

This is very true, however I will point out from my own experience. Due to severe mental illness, Mother never held down a job, her only source of income (post my parents divorce) was social security disability. This gave her very limited funds to work with. Mental health care is expensive and for many who suffer from mental illness the ability to self fund treatment is way beyond their means.

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This goes back to the cost being the main problem.

NHdisneylover said:

Like everyone, I think there are many things that need to change and be looked at. The three biggest things I see, which I think would make the most difference are:

1. Affordability of care. Many, many people simply cannot afford counseling/therapy and even those who can, it is often not covered and it so costly that they opt for medication but not the therapy which I feel is essential to go along with it. In-patient care is even harder to afford and always seen as a serious "last result" in the US for only the worst cases, instead of being an affordable safe place for someone to choose as a way of getting back on track and as a step towards stability and then out patient care.

2. Over reliance on medication alone. I think 80% of the time, the best help is either short term medicine usage combined with long term therapy or therapy alone (but very often short term meds are hugely beneficial--I liken it to strong pain medication that helps someone get through while they get started in PT and eventually the PT can be done with less and less medication and hopefully eventually not be needed at all anymore). And I think 100% of the time psychotropic medication should be combined with regular therapy.

3. This one is not so much about our mental health system changing as it is about our society as a whole changing. As Tina posted upthread, we have become far too obsessed with violence in a very unhealthy way which I simply do not see in many other places and along with that we are obsessed with "justice" in the way of wanting to punish people for any and every infraction (and often it is all or nothing, either we ignore something altogether and say it is no big deal, or it is a life altering mistake-we have long ago dropped the middle ground out when looking at any number of issues here). We need to stop glorifying violence and also stop glorifying "control/punishment" ways of thinking and work towards teaching the next generation kindness, compassion, violence as a last resort which one should prefer to avoid, and focus more on prevention, rehabilitation and reasonable consequences, rather than on arbitrary punishment.

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Good points, however, I do disagree on the bolded point. Psychotropic drugs should of course be monitored but talk therapy is not always going to fix or even help the problem. Example, Schizophrenia, this condition is not fixable and while talk therapy may have some benefit in the early years, it is not reasonable or realistic to require therapy for a persons lifetime.

Prisons are where the severly mentally ill are able to get treatment.

DizBelle said:

I hear/read this statement a long (many times here on the DISboards).

1. (If you know) How does our mental health system work currently?
2. What is wrong with it and how do you think it should be changed?

I don't really have answers to either of these questions myself so I'm just trying to see what other people think. I hope that is ok because I tend to get slammed alot on the DISboards for asking questions.

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Hi, I work in the mental health system. I would say some of the most important things necessary to make the mental health system work better are, in fact, happening right now. Basically, health care reform.

A large number of people who suffer from behavioral health issues (this includes mental illness, substance use disorder, and developmental disabilities) are not among those who are paying for 3rd party insurance. They are unable to work, or can only work menial jobs, or are incarcerated (or threatened with incarceration). They do not receive behavioral health services because they cannot afford behavioral health services. When choosing between behavioral health treatment and their next meal (or between services and their next hit, for those suffering from SUD) the choice is obvious. Few of these people qualify for Medicare, and not all qualify for Medicaid. Prisoners are denied Medicaid reimbursement while incarcerated, even if they are eligible while on the street. Yes, stigma is an issue which can also affect whether a person seeks treatment, but if you can't afford it anyways, the fact that there's a stigma attached to receiving services is kind of a non-issue.

The Affordable Care Act (as professionals refer to it), or Obamacare (for the layperson), has made a difference. I see it in my work. People who could not get services, now can. However, my state (at least) accepted Medicaid expansion by correspondingly reducing the amount of funds the state would otherwise give to local agencies to provide services. As such, although more people can receive Medicaid services, we are now faced with a shortage of funding that we use for the uninsured (who can't get Medicaid for various reasons) or to combat issues that are not Medicaid reimbursable services (e.g., homelessness).

What can be done to help? Support Medicaid expansion. Fight against reductions in funding for behavioral health services. Accept that our taxes will either pay for these individuals to receive services, or it will pay to incarcerate them, or it will pay to clean up the remains of what occurs when they have a catastrophic breakdown. It is your choice on how your tax dollars are utilized.

ZephyrHawk said:

Hi, I work in the mental health system. I would say some of the most important things necessary to make the mental health system work better are, in fact, happening right now. Basically, health care reform.

A large number of people who suffer from behavioral health issues (this includes mental illness, substance use disorder, and developmental disabilities) are not among those who are paying for 3rd party insurance. They are unable to work, or can only work menial jobs, or are incarcerated (or threatened with incarceration). They do not receive behavioral health services because they cannot afford behavioral health services. When choosing between behavioral health treatment and their next meal (or between services and their next hit, for those suffering from SUD) the choice is obvious. Few of these people qualify for Medicare, and not all qualify for Medicaid. Prisoners are denied Medicaid reimbursement while incarcerated, even if they are eligible while on the street. Yes, stigma is an issue which can also affect whether a person seeks treatment, but if you can't afford it anyways, the fact that there's a stigma attached to receiving services is kind of a non-issue.

The Affordable Care Act (as professionals refer to it), or Obamacare (for the layperson), has made a difference. I see it in my work. People who could not get services, now can. However, my state (at least) accepted Medicaid expansion by correspondingly reducing the amount of funds the state would otherwise give to local agencies to provide services. As such, although more people can receive Medicaid services, we are now faced with a shortage of funding that we use for the uninsured (who can't get Medicaid for various reasons) or to combat issues that are not Medicaid reimbursable services (e.g., homelessness).

What can be done to help? Support Medicaid expansion. Fight against reductions in funding for behavioral health services. Accept that our taxes will either pay for these individuals to receive services, or it will pay to incarcerate them, or it will pay to clean up the remains of what occurs when they have a catastrophic breakdown. It is your choice on how your tax dollars are utilized.

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While I am not a huge fan of ACA, I do hear what you are saying. Your last statement, really summed it up well!

Elodia said:

Prisons are where the severly mentally ill are able to get treatment.

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I'm not sure if this is true or not. My cousin murdered his entire family ("to save them from the life he could not provide, they were better off in heaven") and is spending life in prison. I was talking with my Aunt/Uncle one day and we were discussing his mental health issues. My cousin is obviously "not right" he was found fit to stand trial but he obviously has issues. My Aunt says there are no mental health services offered to him in prison at all. Now, I don't know if its because he has a life sentence with no parole, is isolated from the general population etc or if they truly have no services available but he is not getting any treatment.

NotUrsula said:

The truth is that therapy with a psychologist or clinical social worker is usually not very expensive; normally much less expensive than antidepressants. Still, insurance usually won't cover therapy, mostly because it has a stigma of malingering. The meds are the really expensive part, but somehow those almost always get covered.

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I have been dealing with insurance, therapy, psychiatrists and medications for over 12 years for myself and two 2 years with my ADHD son. Never has our medication cost more than our monthly, weekly and sometimes biweekly doctor visits. Right now our copay is $50 a piece to see our psychs every 2 months. Weekly therapy for my son is $50 a visit. My three medications cost $25 a month and the one for my DS is $35. Until we moved to FL, I was paying $300 an hour for my son to get treatment. Why? Because every place that took our insurance was either not accepting new patients, there were month long waiting lists or I would have to drive over an hour to Boston. We turned to private practice to get the help he needed. My options still suck here too. There is ONE group practice within a 50 mile radius that takes our insurance. Thankfully we both ended up with great psychs, but I've had my fair share of ones that suck. I would have paid for private care for a good psych in a heartbeat.

In my experience the insurance companies have way too much control over treatment - especially when it comes to full & partial hospitalization. I have been hospitalized. My insurance company deemed me fit for release even though my doctors said I wasn't stable enough. I was still a danger to myself and ended up back there 3 days later!

Mental illness runs deep in my family on both my mother's and father's side of the family. I have so many relatives that are severe Bipolar 1 or Schizophrenic. It's sad that I feel relieved to *only* be Bipolar 2 & ADD. I am so lucky that I have a support system (my DH & in-laws are rock stars). So much of my family did not and the cycle of poverty, alcoholism and drug abuse has continued with each generation. I'm also very lucky that we have the financial means for treatment. It's an expensive illness that requires life long maintenance.

I don't really know how to fix it. You can't really force people who may or may not be suffering from MI to do anything. It's no different than someone choosing not to take care of themselves after being diagnosed with diabetes type 2 or forgoing cancer treatment in place of quality of life for their final days. I think more and more doctors are turning to private care because the reimbursement rates are so low. There has always been a shortage of providers, but I feel that it is getting worse. I live in Boca Raton which is a pretty big town. It's ridiculous that I would have to drive to Miami if I want to see someone else that takes our insurance.

Men & women in prison can and do receive help for their MI while incarcerated, but what happens when they are released? Their care is no longer "free" and now they have to navigate the real world just like the rest of us. They leave with what? Their clothes and a few dollars in their pocket? How many have the means to secure a decent paying job with affordable insurance plans with reasonable copays, deductibles, etc?