I live in Kansas and I decided to write my Representative to illustrate what life is like for the poor, disabled and those with a Mental health Disorder in the RED state of Kansas run by Governor Sam Brownbackistan. If the name fits then the name fits. Much of my letter is found in different parts of my blog. I did send her this particular entry as well
Hello Ms. Rooker,
My father, XXXXX, has spoken to you in person and via e-mail. We are Democrats but he has been very impressed with you. So I wanted to share my story about what it's like for me to live here.
I moved into Roeland Park in 2002. In 2005 my mother had a debilitating stroke so my family moved three houses down. We both live on XXXXX. If it wasn't helping my dad so much I would leave Kansas, partly for reasons outside of my control.
I feel compelled to share with you my story and how it has affected myself and my family.
I am currently 49 years old. In September of 2014, after a lifetime of quick successes, followed by the inevitable ending of these jobs due to me I was diagnosed with Borderline Personality Disorder. It was a tough situation. There was no doubt that it was the correct diagnosis. I witnessed my mother attempt suicide at age 4 and that was followed by many other "real" abandonment's as an adult. Loss of a sister, sister in law, Mom's stroke, child that was bi-polar that we took in at age 14...the list goes on and on.
As I studied Borderline it was pretty apparent that there was only limited success in treating it. Add in my age and responsibilities to my family and initially it felt insurmountable. I immediately applied for disability. It is a qualifying diagnosis. I am now 21 months into the process. I have been denied three times including at the ALJ level. During my hearing, after 13 years in mid level to Senior management the judge informed me I could polish eyeglasses. I studied the process prior to this hearing. The ALJ is the best chance one has. The national approval rate is around 58% and this judge's rate was 19%. A 70 year old male judge from a small town will never grant disability to a male suffering from a personality disorder. The really sad part is I have a friend who is an ALJ in a more liberal part of the country told me I would be approved in his area. He said it would never make it to him. So...right or wrong...we have a Federal Program that is applied based on what part of the country you live in. Moving would mean leaving my father to raise my sisters child (13) and without any support for Mom who is brain damaged and requires 60 hours of care a week...then he takes over changing the diapers, etc...
To compound my case, my only recourse was XXXXXX Community MH center. Now, my diagnosing therapist and my current one each sent letters in support of me being disabled but none of us believe it needed to be lifetime. I am working so hard in therapy. The judge stated because I did not compensate to a hospitalization so the situation wasn't bad. Of course he failed to acknowledge the 9 O'clock phone calls that went a long way in preventing that. meanwhile told me that they, and most other CMH's, no longer would write a letter in support at the psychiatric level. So no actual "Doctor" would write a letter or even fill out the form disability sent. There were several other issues but honestly I only point out the disability case to share my main issues. I realize there isn't anything you could do about disability...nor am I asking for anything. I just wanted to give some background.
In Sept of 2015 my wife was making $1100 a month caring for my Mom. Because Kansas declined Medicaid Expansion and then could set their own "requirements" the allowed income for eligibility, for a family of 4, was $790/month. That is not a misprint. In addition disability also allows $800 a month. So...on two levels I was put on the edge of a chasm. I have multiple health issues and am on 9 medications so losing my insurance would devastate me. In addition, the people treating me said I would need about 2 years of treatment and even then there was no guarantee. I was also encouraged not to look for a part time job. Quitting another job may be the end of me and the consequence on my family would be huge.
My wife ended up in the crisis center in Sept. 2015. The caretaker fatigue was just too much for her to continue caring for my mother. There is a long story there but I won't digress to that. With no income we qualified for Medicaid but it took till December.
How do we make it with no income? Loans. My father, who is retired now, loans us the bare minimum to make it. We pay him back with our tax return. Loans, thank God, are not considered income or we would be homeless.
The chasm it puts me on is I/we have to make less than $800 or more than $3000/month. I was $72,000 at my last professional job. I have no real references, some are dead and others are jobs I left, often hastily and due to my disorder. I don't in any way feel like my behavior was correct or justifiable but at least we knew why now.
So what do I do? As much as people complain about part time jobs there aren't many that are so part time you don't exceed $790/month. It's criminal Ma'am. Or should be. Shaming people out of entitlements doesn't work. All along the way I felt like even if it was waiting tables, I could share in the cost but I can't lose my insurance. So O'Bamacare has one major drawback, if a state doesn't accept Medicaid Expansion "healthcare for all" is a myth. How can I look at it as anything but Republicans punishing people like me to make a political point. It makes me angry.
The hardest part for me is my children have to pay this price. If you are a parent then there is no doubt that you understand. We can't keep up with the "Joneses'" and they are bullied for being poor. All these trauma's have left my 13 year old w/PTSD, depression and anxiety which has now led to her cutting on herself. She was briefly hospitalized in April for suicidal ideation. She currently has a case manager and therapist and two parents who love her very much.
The disability process has been wretched. The length of time it has lasted so long that we are struggling in a way a family shouldn't. It upsets me when people so quickly dismiss what I go through. I am blessed with good support, good insight into the disorder and a resiliency that has started to fade. I can't even begin to imagine what people with my disorder go through w/out the support I have...and even with my support I have had days that I am so low...I understand why people commit suicide. Side note- of the 9 traits of Borderline I am classic of 8. The one I never have felt is a suicide desire. Perhaps because that's what I witnessed.
The ability to provide for my family while I am disabled...well...its exactly what disability is for. It won't make me rich in fact we will go to Medicare and that carries out of pocket expense. $2000/month is about what I would be paid.
I realize you probably can't help much here. What I wanted to do was let you know what someone like myself goes through. The next time Medicaid Expansion is a conversation you are in, feel free to share my story...I started blogging from day 1 and will include the link should it be of interest to you. I will also include the blog entry that covered this.
God Bless you
Thank you for writing to share your story. I am so sorry that the system is so difficult to navigate under the current administration. I will continue to fight for Medicaid expansion to help with the coverage gap created. your story of the limitations the gap places on your ability to work and earn a living is one I have heard from many people. It makes no sense to penalize working people by creating the incentive to work less in order to stay qualified. We have a really good bill that addresses this problem and a coalition of more than 70 agencies, advocacy groups and providers helping push it. I remain optimistic that we get the job done.
If I can be of help. please let me know.
Thank you for your reply. I think there are a few things that need to happen and maybe you can help.
1- Accept Mental Illness as a disease and part and parcel to that we need to;
2- Not start with a presumption that "everyone" applying for assistance is out to "game the system" or is "lazy" It's an attitude adjustment so to speak or perhaps a better term is its the direction our culture is headed and we shouldn't be presumed guilty (IE...taking advantage of) as I believe the majority of people are not that way and if they are then like any other crime there needs to be evidence of wrongdoing rather than a presumption of guilt.
3- As I tweet with my blog frequently. Talk more to us (The Mentally Ill) and less about us. Most of us are really smart and through writing, speaking or some other venue can explain what its like.
I'd personally love to speak to people about this to create a better understanding and acceptance. I don't know where I will end up but its my sincere desire to help others, in fact in my darkest moments the opportunity to help others is very uplifting.
Basically, at the end of the day, I believe we need to shift how we view the poor and those with Mental Illness...often tied together. Of everyone running for President this year, John Kaisich summed it up best of ALL the candidates
"When you help people who people normally in politics run over, people notice. Here's what I mean. You know how easy it is in politics to ignore the resources you need for the mentally ill? It's really easy. they don't have a lobby, they don't have any power. so when you tend to them, when you make sure that you treat them right, that's a great thing. And people notice. And they respect it. And so don't ever ignore those that don't have the power." - January 19, Concord, New Hampshire.
Thank you for your reply, it means a lot.