National Alliance on Mental Illness
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What you said about health insurance coverage for people with mental illness

TRIAD's first nationwide survey of NAMI members showed that health insurance coverage continues to be a source of much stress and inequity for people with mental illness in America. Health insurance is a lifeline for many people with mental illness as expensive medications and numerous doctors’ visits are commonly needed to manage their illness. Even though many of the individuals represented in the survey relied on public health insurance programs like Medicaid and Medicare, nearly as many—36 percent—had private health insurance policies, either self-paid or through their employers. Ten percent reported no health insurance coverage at all. The open-ended comments underlined the frustrations of many people with mental illness and their families with the policies of some private health insurance companies that restrict access to necessary care and stressed the need for federal parity in private health insurance.

A web-based survey of visitors to the NAMI website in August 2003 confirms that private health insurance coverage is critically important to many people living with a serious mental illness. Fifty people answered the questions on health insurance of which 57 percent were individuals with mental illness and 36 percent were family members or friends. The majority—56 percent—were covered by private health insurance provided through an employer, either part- or fully-paid, and an additional 18 percent had self-paid private health insurance. Almost one in five respondents had no insurance at all.

Although most of the respondents had private health insurance, the survey data reveals major problems with this industry. One quarter of respondents said they, or their loved one, had been denied private health insurance because of a mental illness, and of those that had private health insurance, only 17 percent said that it adequately covered the cost of mental health treatment. Disturbingly, 25 percent of respondents also said that they had been deterred from employment or moved to public health insurance programs such as Medicaid because of the lack of private health insurance coverage for mental illness treatment. Clearly discrimination in the field of private health insurance is a major problem within our nation’s troubled mental health system.

Does the private health insurance that you or your loved one with a mental illness have adequately cover the costs of mental health treatment?


Many respondents to the web-based survey gave voice to their difficulties with private health insurance:

…. The amount allowed for mental health is ridiculous. Mental illness can be very expensive, but I have come to experience first hand how much more expensive it can be left untreated.

When my husband was working we were paying close to $400 every month to have the private insurance through Blue Cross and Blue Shield of Michigan. BCBSM only allowed $2000 LIFETIME for any and all mental health treatment. That was seriously inadequate and unfair.

Excellent insurance through employer partially paid insurance. The only thing we are learning is that since our loved one is on my group medical plan he then loses out in getting access to local subsized housing. The local mental health agency won't accept him since he has private insurance and not Medicaid. So the question is do you get adequete health care or your own housing? It puts a real burden on the parents and for the consumer who wants independance but is faced with making a decision between medical insurance or housing. We also are frustrated with the long waiting lists for section 8 housing

I am a working professional employee with mental illness that is now under control. My insurance limits my visits which severely restricted the number of weekly psycho-education sessions I could attend so I made the decision to go "private pay" to get the treatment I knew I needed to get my life back. This is so unfair. My therapist and psychiatrist made recommendations for treatment and I found out my insurance wouldn't cover the visits!! The insurance companys wouldn't even think of limiting the number of recommended radiation treatments for a cancer patient, would they? Just because it's a mental illness, they can get away with this. I paid $3,000 out-of-pocket in psychiatric, one-on-one therapy and group therapy visits last year to avoid hospitalization. What are people to do when they don't have the financial resources to do this? My husband and I both have professional jobs. I am so fortunate that there is parity when it comes to medications as my medication is on the higher end of the cost spectrum.

I have OCD, but my insurance will only pay for five sessions of therapy a year, so I can't really get help. Things got so bad that I needed to be put in the hospital, but the insurance company will only pay for two weeks of inpatient care in a lifetime. I'm not wealthy, so I can't afford to get the help I need without the insurance paying for most of it. The government really needs to do something about this.

I worked for local government for years but lost my job and could not afford private insurance…My current employer hires me as an independent contractor so I am not eligible for insurance. I receive county assistance for my medication, but I live in dread of a long-term hospitalization….I have always worked when I was well and refuse to go on disability because I believe I can work. However, the reality is that I and my son and others will probably be forced into further poverty without insurance.

I am a self-employed professional who had no problems with health insurance coverage, even after I changed to an "individual" plan. I had been insured through the same company under various plans for about 5 years. When parity was passed into law, they began denying coverage for medications they deemed "psychotropic". In other words, if my Neurontin was prescribed for epilepsy they would cover; since it was for bi-polar disorder, I was denied. I dropped the insurance and began self pay at a cost of $300 - $500 per month just for meds. Other factors, some directly related to my illness, have caused loss of income and I recently went to my public mental health agency for meds. I discover that, while the good news is that they have the most expensive drug in stock, they will not carry generic Adderall (only Ritalin - which I do not tolerate well) nor will they dispense Alprazolam (generic Xanax). It has taken me over 3 years to find the right med mix to allow me to continue in my profession in a competent manner. I can no longer do so. My ability to earn a living is now seriously jeopardized in largest part because of my insurer's insistence that they need not honor parity for "individual" plans. Further, although companies will not say so, if they hire you, they know their group’s rates will increase so they tend to pass you over or offer you a lower salary to compensate.

I live in Washington state where there is not only no parity for mental health coverage but there isn't a single individual policy in the state that covers mental health any longer. I have recurrent major depression and in the past I had employer paid health insurance and was often able to obtain fairly good care (althought it is very hard to leave during the day). Even though I have been without a job for almost a year now I have kept my medical insurance because if I lose it I will be required to fill out a form for new insurance that asks if you have a history of depression. If you do you score too many points to obtain regular insurance (even though they don't cover mental health ) and you are pushed into the high risk pool. There it can cost double what a regular policy does. (and I can't afford that). I honestly feel like this time around I won't be able to pull myself out without medication or counseling and I am so exhausted that its not even worth fighting anymore to get any sort of coverage when it all seems so hopeless. Clearly society blames people like me who struggle to live with a severe neuro-biological disorder since they won't cover the treatment but they will pay to treat preventable illnesses like lung cancer or heart disease? I wonder if I am really the "crazy" one sometimes.

Simple, not enough coverage! My son was diagnosed with paranoid schizophrenia in 2000 at 16 years old. He was dropped from coverage at 18 years old because he does not attend school. He is without any coverage at this time. My son has been hospitalized 5 different times. Every time the hospital bill is at least $30,000.00. We are so far in debt I just don't think we will ever get out. I feel for those who have no coverage or family support. I do not know where my son would be if he did not have us to lean on.

Three years ago I was forced to quit my job because of my depression. I had been covered by group insurance through my employer until that time and assumed I would be able to obtain private health insurance after I quit work. I went ahead and terminated my employment based upon that assumption. It didn't take too long to find out that I was "uninsurable" according to 4 different insurance companies. I have no option but to keep the insurance offered through my former employer - at the premium rate of $1088.00 per month. Now, 3 years later, I made the decision to purchase long term care insurance. I am 57 and thought it a good idea to obtain the nursing home insurance before I got older when the premiums would be higher. I applied to 2 different companies and was denied coverage by both because of my history of depression. Trying to understand why health insurance wasn't available to me is no comparison to the frustration and desperation I feel by not even being able to obtain long term care insurance. It's as if the insurance industry considers persons with depression or other types of mental disorders as 2nd class citizens or worse. I certainly think something should be done to cure this inequity in the health insurance industry.

Simply stated... I am uninsurable. I can not get private insurance and because I want to work, I am unable to get medical. I either choose to drop out of society to get help from the state or live in poverty to pay for my doctors and meds.

We have a maximum of 20 visits per year to a mental health professional (psychologist and psychiatrist. This is very inadequate. Mental health parity is a MUST...when is it coming to the millions who suffer a mental illness?

Thanks to all who shared their experiences with us.

Back to TRIAD's Shattered Lives Report