Post by em on Oct 19, 2019 9:59:08 GMT 7
Hi everyone, I got put onto this board from someone in another DSP group and I want to share my story.
I have worked since age 13, where I started off doing paper rounds. I worked various jobs throughout high school and when I got sick in 2013 I was working part time and studying at university. I was eligible at the time for centrelink study benefits and I could have worked less hours and still ended up with the same amount of money that I was making from part time work, but I chose to work more while I was at uni and fully support myself so I didn’t have to rely on centrelink. My body has never been quite right and I have suffered from various issues over the years that no one could explain like problems with my eyes and three spontaneous lung collapses where I just woke up one morning and my lung collapsed, but before 2013 I was able to still manage quite a normal life. Then in 2013 I was in a car accident and this seems to have really set things off for me- I have never been the same since. I started blacking out at the gym and started having issues with vomiting every meal I ate, severe abdominal pain and nausea with lots of heartburn. I quickly deteriorated and I had to drop my university degree. I tried to keep working but my body was not coping. Eventually my boss ended up saying to me that I can not come back to work until I am well enough because no matter how hard I tried I was always so sick from work that I could not manage. I kept deteriorating after that and the Gastroparesis got so bad that I couldn’t eat at all, I lived off one Gatorade a day for months, and I got so weak I could not walk anymore. I eventually got a medication that helped me to be able to eat through the special access scheme, but it is not a cure and i still suffer from many symptoms daily. After I got the medication I thought that I could build myself up back to normal and I did manage to build up my strength enough to be able to walk again but I was still really sick and no matter how hard I tried I was still suffering various symptoms to do with my heart, severe fatigue and weakness. I was diagnosed with Chronic Fatigue Syndrome and this is where I first applied for the DSP and the nightmare began.
For my first application I was seen by a centrelink psychologist. I got 10 points for Gastroparesis and she decided that my chronic fatigue and other symptoms were actually hypochondria. Some of the things that she wrote in the report were that I have “health anxiety” and that I am “agitated about issues surrounding health”. I also told her that I could not attend appointments with my DES due to fatigue and weakness- she wrote in the report that “anxiety impacted upon ability to attend appointments”.
I appealed that decision to the ARO and it got even worse. The ARO quoted what their psychologist said as though it was fact. They even contacted the hospital to gain information from when I was on a heart monitor for 2 and a half weeks due to my resting heart rate being above 160bpm every day. They used the fact that while I was in hospital for my heart that I also saw psychiatry in hospital as evidence for anxiety, yet the heart condition was completely ignored. I was put on beta blockers for my heart rate while in hospital and they even wrote under the diagnoses of anxiety that I am taking the beta blockers for anxiety.
My second application was a year later. I saw a different centrelink psychologist and got 10 points again for Gastroparesis. For the chronic fatigue syndrome he followed the last psychologists assessment of me and added to it- according to him my “health anxiety” had morphed into a “primary problem” with depressed mood and boredom. In his report he claimed that I would have a 100% resolution of my chronic fatigue syndrome with improvement of depression- and the depression would improve with a return to work.
I had basically given up after my second application but I was forced a year later to put a third application in after they would not accept any more medical certificates. I had been seeing a psychologist to do CBT for my chronic fatigue syndrome and she wrote a letter for my application- explaining that I have depression and anxiety but that this was secondary to my health problems. She explained in her letter how my chronic fatigue syndrome affects me severely, that I have done everything I can to try and improve to no avail. My psychologist was very supportive of me at that point and also wanted me to see more specialists as she felt there was something else wrong with me and that I needed to be seen by someone. Centrelink completely twisted my letter. They said that everything she wrote about how chronic fatigue syndrome affects me was actually about how major depressive disorder affects me. They claimed my fatigue and weakness was actually “extremely severe major depressive disorder” and that I would be able to work after I see a psychiatrist and get medications- so they would give me 1 year off from looking for work. My psychologist was so shocked by how they twisted her letter- she said there is no explanation for how this happened other than that it was done “deliberately”
After this happened I ended up having quite a few severe flare ups of my health issues which lead me to being hospitalised at a better hospital than the one where I was originally diagnosed with chronic fatigue syndrome. As soon as I got into hospital I saw a surgical team and told them about my health problems etc and they diagnosed me straight away. I have now been given eight specialists to see and I now have been diagnosed with Ehlers Danlos Syndrome, severe autonomic dysfunction, Postural tachycardia Syndrome, Inappropriate sinus tachycardia syndrome, Gastroparesis, small fibre neuropathy, Chronic fatigue, constant partial dislocations of the joints and a lot more. I am still waiting to see some of the specialists I have been referred to. So now I had a tonne of evidence and reports from specialists about my conditions, centrelink could not deny it this time and I applied again for DSP recently. I also added a huge complaint which I sent to Hank about how they twisted my conditions and falsified evidence in the previous JCA reports. I made a complaint as well about a staff member at my local clink who got abusive to me once and told me that I shouldn’t have been told I can apply for DSP, that her “grandfather has fatigue and he still works” while aggressively shaking her head at me. I don’t know what the end result of my complaints were because they just said they will pass them on to the relevant department. I got a call yesterday saying this application has been rejected. The woman on the phone said that she can see I’m “really sick” and that I have a really long JCA report and that they do consider that my conditions are permanent conditions, but they can not say from the evidence that I provided that I am fully treated and fully stabilised. So now I have put my application in to the ARO. Round we go.
The other problem I am having right now is that my DES provider did not exit me from a POS even though a person I saw years ago said I am too sick to do the POS. I want to be exited incase centrelinks next move after I get enough evidence is to spread my points across multiple tables but not give me the 20 I should be in the table for exertion and stamina. My DES has come up with a number of claims about why I can not be exited from a program of support. First they tried to claim that it is illegal to exit someone from a program of support. I asked for the legislation where it says that so then they told me that no one can be exited because if they fill out the exit form then centrelink will automatically reject my DSP. They keep telling me that no one can be exited from a program of support and no matter what you have to do the 18 months if you are a person who is on Newstart allowance. I know this is not true. I have spoken to a number of people now and found out that they can do it, but they don’t want to.
I have tried to get an advocate to no avail, the one in my area is closed down. I am having a hard time now because I can not afford to see specialists just to get them to write something for DSP and my GP thinks it’s a waste of time for him to write anything for me because he has tried in the past and none of his patients have been able to get DSP, some of his patients who used to be on it have also been removed. He told me I will never get it because the people who make assessments get incentives to not put people on it. I am not sure what to do now or where to go, I have a year to get myself sorted because once again centrelink has had to admit I do not have the ability to work and so they have reduced my obligations to none. I already know my ARO appeal is going to be rejected. My medication and physical therapy costs are unsustainable on Newstart allowance. The medications I’m on already cost $200 a month and there are two experimental medications they want me to try but they cost $100 each for a months worth. Then there is appointments and physiotherapy that I need...The woman on the phone told me that now I have a year to look after myself and try new therapies and medications... One can only laugh at how ridiculous that is and how out of touch they are considering I am only on Newstart allowance.
I have worked since age 13, where I started off doing paper rounds. I worked various jobs throughout high school and when I got sick in 2013 I was working part time and studying at university. I was eligible at the time for centrelink study benefits and I could have worked less hours and still ended up with the same amount of money that I was making from part time work, but I chose to work more while I was at uni and fully support myself so I didn’t have to rely on centrelink. My body has never been quite right and I have suffered from various issues over the years that no one could explain like problems with my eyes and three spontaneous lung collapses where I just woke up one morning and my lung collapsed, but before 2013 I was able to still manage quite a normal life. Then in 2013 I was in a car accident and this seems to have really set things off for me- I have never been the same since. I started blacking out at the gym and started having issues with vomiting every meal I ate, severe abdominal pain and nausea with lots of heartburn. I quickly deteriorated and I had to drop my university degree. I tried to keep working but my body was not coping. Eventually my boss ended up saying to me that I can not come back to work until I am well enough because no matter how hard I tried I was always so sick from work that I could not manage. I kept deteriorating after that and the Gastroparesis got so bad that I couldn’t eat at all, I lived off one Gatorade a day for months, and I got so weak I could not walk anymore. I eventually got a medication that helped me to be able to eat through the special access scheme, but it is not a cure and i still suffer from many symptoms daily. After I got the medication I thought that I could build myself up back to normal and I did manage to build up my strength enough to be able to walk again but I was still really sick and no matter how hard I tried I was still suffering various symptoms to do with my heart, severe fatigue and weakness. I was diagnosed with Chronic Fatigue Syndrome and this is where I first applied for the DSP and the nightmare began.
For my first application I was seen by a centrelink psychologist. I got 10 points for Gastroparesis and she decided that my chronic fatigue and other symptoms were actually hypochondria. Some of the things that she wrote in the report were that I have “health anxiety” and that I am “agitated about issues surrounding health”. I also told her that I could not attend appointments with my DES due to fatigue and weakness- she wrote in the report that “anxiety impacted upon ability to attend appointments”.
I appealed that decision to the ARO and it got even worse. The ARO quoted what their psychologist said as though it was fact. They even contacted the hospital to gain information from when I was on a heart monitor for 2 and a half weeks due to my resting heart rate being above 160bpm every day. They used the fact that while I was in hospital for my heart that I also saw psychiatry in hospital as evidence for anxiety, yet the heart condition was completely ignored. I was put on beta blockers for my heart rate while in hospital and they even wrote under the diagnoses of anxiety that I am taking the beta blockers for anxiety.
My second application was a year later. I saw a different centrelink psychologist and got 10 points again for Gastroparesis. For the chronic fatigue syndrome he followed the last psychologists assessment of me and added to it- according to him my “health anxiety” had morphed into a “primary problem” with depressed mood and boredom. In his report he claimed that I would have a 100% resolution of my chronic fatigue syndrome with improvement of depression- and the depression would improve with a return to work.
I had basically given up after my second application but I was forced a year later to put a third application in after they would not accept any more medical certificates. I had been seeing a psychologist to do CBT for my chronic fatigue syndrome and she wrote a letter for my application- explaining that I have depression and anxiety but that this was secondary to my health problems. She explained in her letter how my chronic fatigue syndrome affects me severely, that I have done everything I can to try and improve to no avail. My psychologist was very supportive of me at that point and also wanted me to see more specialists as she felt there was something else wrong with me and that I needed to be seen by someone. Centrelink completely twisted my letter. They said that everything she wrote about how chronic fatigue syndrome affects me was actually about how major depressive disorder affects me. They claimed my fatigue and weakness was actually “extremely severe major depressive disorder” and that I would be able to work after I see a psychiatrist and get medications- so they would give me 1 year off from looking for work. My psychologist was so shocked by how they twisted her letter- she said there is no explanation for how this happened other than that it was done “deliberately”
After this happened I ended up having quite a few severe flare ups of my health issues which lead me to being hospitalised at a better hospital than the one where I was originally diagnosed with chronic fatigue syndrome. As soon as I got into hospital I saw a surgical team and told them about my health problems etc and they diagnosed me straight away. I have now been given eight specialists to see and I now have been diagnosed with Ehlers Danlos Syndrome, severe autonomic dysfunction, Postural tachycardia Syndrome, Inappropriate sinus tachycardia syndrome, Gastroparesis, small fibre neuropathy, Chronic fatigue, constant partial dislocations of the joints and a lot more. I am still waiting to see some of the specialists I have been referred to. So now I had a tonne of evidence and reports from specialists about my conditions, centrelink could not deny it this time and I applied again for DSP recently. I also added a huge complaint which I sent to Hank about how they twisted my conditions and falsified evidence in the previous JCA reports. I made a complaint as well about a staff member at my local clink who got abusive to me once and told me that I shouldn’t have been told I can apply for DSP, that her “grandfather has fatigue and he still works” while aggressively shaking her head at me. I don’t know what the end result of my complaints were because they just said they will pass them on to the relevant department. I got a call yesterday saying this application has been rejected. The woman on the phone said that she can see I’m “really sick” and that I have a really long JCA report and that they do consider that my conditions are permanent conditions, but they can not say from the evidence that I provided that I am fully treated and fully stabilised. So now I have put my application in to the ARO. Round we go.
The other problem I am having right now is that my DES provider did not exit me from a POS even though a person I saw years ago said I am too sick to do the POS. I want to be exited incase centrelinks next move after I get enough evidence is to spread my points across multiple tables but not give me the 20 I should be in the table for exertion and stamina. My DES has come up with a number of claims about why I can not be exited from a program of support. First they tried to claim that it is illegal to exit someone from a program of support. I asked for the legislation where it says that so then they told me that no one can be exited because if they fill out the exit form then centrelink will automatically reject my DSP. They keep telling me that no one can be exited from a program of support and no matter what you have to do the 18 months if you are a person who is on Newstart allowance. I know this is not true. I have spoken to a number of people now and found out that they can do it, but they don’t want to.
I have tried to get an advocate to no avail, the one in my area is closed down. I am having a hard time now because I can not afford to see specialists just to get them to write something for DSP and my GP thinks it’s a waste of time for him to write anything for me because he has tried in the past and none of his patients have been able to get DSP, some of his patients who used to be on it have also been removed. He told me I will never get it because the people who make assessments get incentives to not put people on it. I am not sure what to do now or where to go, I have a year to get myself sorted because once again centrelink has had to admit I do not have the ability to work and so they have reduced my obligations to none. I already know my ARO appeal is going to be rejected. My medication and physical therapy costs are unsustainable on Newstart allowance. The medications I’m on already cost $200 a month and there are two experimental medications they want me to try but they cost $100 each for a months worth. Then there is appointments and physiotherapy that I need...The woman on the phone told me that now I have a year to look after myself and try new therapies and medications... One can only laugh at how ridiculous that is and how out of touch they are considering I am only on Newstart allowance.