TRIAD's first nationwide survey of NAMI members told us that mental illness—and the mental health system—creates powerful economic havoc for those living with a serious mental illness. More than 70 percent of those with mental illness represented in the survey have an annual income of $20,000 or less; 20 percent live on $5,000 each year.
Disability combined with mental health policy that deters work and savings and permits exorbitant costs for mental health treatment add up to impoverishment and terrible stress.
Our web-based survey in August 2003 confirm these results. One hundred and four respondents offered insights into the economic struggle people living with mental illness face. In the NAMI web survey, 67 percent of those who responded to the question were individuals with a mental illness, 29 percent were family members or friends.
Nearly one-third of the respondents—30 of 104—reported an annual income of $5,000 or less. 17 percent reported an annual income between $5,000 and $10,000; 21% between $10,000 and $20,000. Two thirds of the respondents had an annual income of $20,000 or less.
Sources of income included: wages from a job (24 of the 55 respondents to the question or 44 percent); SSDI (12 of 55 respondents or 22 percent); SSI (6 of 55 respondents or 11 percent); and money on a regular basis from family (7 of 55 respondents or 13 percent).
Limited income proved a barrier to a variety of treatments and services, including housing (10 of 50 respondents or 20 percent); medication (5 of 50 respondents or 10 percent); counseling (10 of 50 respondents or 10 percent).
The open-ended responses spelled out the importance of government programs as well as the struggle for economic survival and treatment:
While out of work due to my illness, I waited for approximately two years before SSDI was approved…I had to borrow lots of money and ended up having to declare bankruptcy due to …the sheer amount of money that I needed to borrow to survive the intervening years.
The limits of SSDI also limit the individual. To become independent, my child would have to live below the government set limits for poverty so as not to lose her disability income, and therefore, her Medicare status.
I have struggled for most of my life dealing with severe mental illness. I lost many jobs because of bipolar disorder and depression and got into trouble with credit cards because of impulsive behavior. Now that I can no longer work—jobs trigger my worst symptoms and my job performance is barely adequate or I end up losing the job because of subpar performance—I am on SSDI, and am responsible for buying my own meds and copays on Medicare. Medicaid only kicks in when I have met a spenddown that cuts my SS down to around $500/month. Because I’m in HUD housing, my food stamps were cut to $10/month, and half my remaining incomes goes to rent. I’m left with $260 or so to maintain a vehicle, buy groceries, pay utilities, and any medical necessities Medicare/Medicaid won’t cover.
I am the mother of an adult child with mental illness. My husband and I have struggled to come back financially after my husband injured himself at work 5 years ago. Our daughter, now 22, began the symptoms of depression and some psychotic episodes 2 years ago. The fees for each psychiatric visit are high and since she has no insurance and has not been able to hold a job we have had to finance her treatment. The doctor has lessened his fee a bit and helped with medication samples and we are very grateful for that. Nonetheless, getting quality treatment is difficult and support is scarce. We have not been able to keep every appointment due to our daughter feeling guilty about our paying when we are financially strapped. It is a sad situation for her and us.
The illness has prevented me from continuing my college education and getting a degree. I work every day, 40 hours per week. People on the outside say or think I make a very good living, when in actuality one pay check per month pays my rent; the second one pays the bills and pays for the eight medications that I am on. This does not include medical bills. There are times before the month is out that I have to rely on my sons or friends to help with food. This is not an easy life and I would not wish it on my worse enemy.
I am a married mother of 3 kids. I am on SSDI for bipolar disorder, borderline personality disorder, and other diagnoses. I also have 2 kids on SSI for similar problems and other medical issues. We were cut off our Medicaid months ago and none of us have had our meds!!!! I have tried everything to get them…My doctor and my kids doctor are aware that we no longer have medical coverage. I was only able to get some samples from our docs for a while, but they wn’t keep giving samples out. I think it is just plain AWFUL!! Here we are on SSDI and SSI for all of our mental and physical issues, and we can’t even get our meds!! I just don’t know what to do anymore!!
I am one of the lucky ones, right now. Without insurance, my monthly bill for medication would be $600 and sessions with my psychiatrist would be $125. I am 19 years old and am a student at a small liberal arts school, so money is a real concern in the future. My family is supportive; however, it is embarrassing to ask someone for money because I need medication—it’s a social stigma that is hard to overcome. I am one of the lucky ones, though…for that I am eternally grateful.
First, I had to use up my very limited psychiatric care coverage on my insurance policy. Then, my child had to be taken (when she was enraged and dangerous to us and the community) into protective custody in order for her to get state psychiatric help. Then I had to quit my teaching job to stay home with her because she needed residential treatment, and no place would take her. Then the bill for private stays came in (the 20% to 50% after insurance pays). Then I went bankrupt and my house was forclosed. Then I moved to another state to live with my sister and her family. The state provided medical coverage for my mentally ill child and after 10 months of back and forth to mental hospitals and short term homes, she was accepted into a program. It is a residential treatment center and it has made huge improvements and helped her. I worked at a temporary job during that year and now I am looking for a permanent job. But we are living in a rental with used everything and scrimp each month, even using community food services twice, to get by.
I am mentally ill and riding the bus, to and from doctor appointments and filling prescriptions, etc., taking hours to complete a small trip. We spend three to five days a week going to these places. She is in a wheelchair because of her back pain. I am psychotic. She is psychotic. We have no money. Haven’t had any for over a year. We made a few dollars doing petitions, but lost that job. We can’t work for a real job, because who would understand all our needs and our medical schedule. SSI takes years. We are in appeal on her case and that appointment will take 6 to 8 months more; it has been a year already. They admitted that they automatically deny your first two attempts at SSI, until it goes to appeal and then you get partial backpay for all that time, but really only about a third of that time. We are in a shelter. Our time in the shelter will expire in one more month and then we will be homeless on the street again.
Thanks to those who took the survey and had the courage to tell us about their struggles.