The Good Fight
Updated: Jun 21
Better to fight for something than live for nothing. George S. Patton
One time this summer when I was in a hospital and patients kept complaining about the food or the activities or lack of freedom, etc, one of the staff members insisted this was a "free vacation" and we needed to sit back and be grateful. I was astounded. First of all, what kind of vacation takes your shoe laces away? Keeps your toiletries so that you have to ask permission every time you want to get clean? Feeds you unhealthy food that you don't have any choices about? But that's just the beginning. What really bothered me is the fact that he thought this was free. For people with Medicaid, this is free.
For people like me, who were able to work for small portions of their life and therefore don't qualify for Medicaid, but have medicare instead, a hospitalization costs between $1500 and $1800 after insurance. I, like most Americans, do not have $1800 to spare (although they always ask...) so we make ANOTHER payment plan and I pay $50 more a month for almost three years on yet another bill.At first I was disgusted and angry that he could be so judgemental, but over time I've come to realize that he is completely uneducated. Most people with serious mental illness have not been able to work, or only worked at an entry level job and never made a living wage. Because of this, they qualify for SSI(Supplemental Security Income), money that comes in each month, a bridge card to pay for food, and access to CMH which gives free counseling, free psychiatrists appointments, free medications, free in home services as needed, and the ability to join a clubhouse (somewhat similar to a day program, but focused on job skills and making people more independent).
In general, it's a very supportive system and things are going pretty well. There are currently some bills in Michigan that want to privatize some of the services, which we are fighting against, but in general it's going pretty well. Unless you're like me.I didn't have a diagnosis until I was 26, so I went to college, got incredibly over-involved in student activities, and barely slept, but I walked away with a bachelor's in special education-cognitively impaired and mathematics, along with a teaching certificate.
I immediately started teaching, and just as quickly went down hill. I hated myself so much that I would beat myself with a hammer as a punishment just for being me. I had my first suicide attempts and my first hospitalizations. Within three years it was clear that I couldn't work. But then, over several years, things seemed to be getting better and I managed to get my masters in Applied Behavior Analysis and passed the boards to become a Board Certified Behavior Analyst. I loved my job and was really good at it...for about 2.5 years...and then I completely crashed. We had to do ECT, I went to a residential program for six months, and we realized that I am never going to be able to work full-time again.What does this all mean? That I had a significant income for almost 6 non consecutive years.
So....I don't qualify for SSI, I qualify for SSDI (Social Security Disability Income). It also means I don't qualify for Medicaid, I qualify for Medicare. So what?! It's got to be pretty much the same, right? Wrong. It means I get very little help from the government. I don't qualify for CMH, so I have to find my own psychiatrist and counselor. I absolutely love who I have, but my doctor doesn't take insurance, and even after a discount it's almost 200 a session and I often see him several times a month. Sometimes my counselor is covered, but if not it's $40 a session about once a week. Between physical and emotional needs, I take about thirty pills and sprays ànd inhalers a day, even with significant insurance help that costs up to $50-$100 a month.
And the couple of times I had to take an ambulance from one hospital to another, we've gotten bills for around $16,000. Oh, and I pay for all my own food, mortgage, electricity, etc. I don't know how much less a person gets that has never worked, but I know the difference is significantly less than what I'm paying. I feel like I am being punished for pushing myself to try to have a career. I want to make it clear, I do not in any way want to see services removed from people who weren't able to work at all. That is not the point of this post.
The point is, there needs to be equivalent supports for people like me, who tried working, but failed miserably and are going to require government supports for the rest of their life.
I'm asking for people to understand that not all people with serious mental illness are receiving government supports, and that those people matter, too. That they shouldn't be punished for TRYING to work and discovering that it's impossible with their level of disability.
I know there is no way on earth I would be making it without financial support, daily living skill supports, and driving supports from my mom, and she certainly doesn't get paid to help.
So the next time you are bored and there's nothing good on tv, consider writing to your legislators and mention people like me and how we need support, too. It's time for change and we can make a difference!