Fix the issues with accessing the Disability Support Pension
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The current process for people suffering from chronic illness and disability to access social services is flawed in Australia. With waiting times exceeding 9 months for people to be assessed for the Disability Support Pension (DSP) it is forcing those living with a disability in some cases to live a lifestyle that puts them below the poverty line and is causing immense emotional hardship.
My name is Jake Bailey. I am 23, I have completed a university degree straight out of high school and after that I begun my hairdressing apprenticeship. I always prided myself on being an outgoing and hard working individual. Last year, however, I was forced into an early forced retirement due to the genetic chronic illness Cystic Fibrosis. Cystic Fibrosis is primarily a lung disease, however, it also affects most of the other major organs in the body. As it stands, Cystic Fibrosis (CF) is the most common genetic life threatening illness in the country, double lung transplants are a common prognosis and those who have CF have a mean life expectancy of 39 years old. As a result of my CF I have a predicted lung capacity of 40% which requires me to perform daily physio and antibiotic therapy. The decreased capacity furthermore limits me to the amount of physical activity that I can do. Further complications from CF has resulted in my pancreas being damaged to a point where I have to consume 30+ tablets a day (pancreatic enzyme replacements) and adhere to a strict diet in order to gain any nutrients out of food. The health regime that I have to follow in order to maintain my health leaves me as a time poor person, with these treatments taking hours out of my day, and weeks out of my year when hospitalization becomes a necessity. Living with these extra responsibilities did make work a more arduous task and it did take a toll on my body with my lung capacity taking a hit of around 15% in the two years where I was working full time and my time spent hospitalized increased. With these statistics in mind under the advisement of the team of medical professionals who look after me at the Prince Charles Hospital Brisbane I was recommended to apply for the DSP in order to prolong my health.
At this time, armed with 23 years of medical evidence from a range of professionals across all fields of medicine (Thoracic specialists, Mental health professionals, Dieticians etc.) I applied for the DSP with Centrelink. My claim was left sitting for over 4 months before I was contacted; albeit after I checked up on the process of my claim multiple times, by the department. In this time, my interim payment (newstart allowance) had been cancelled or suspended 4 times, due to a lack of communications between departments because I had exceeded the allotted exemption period for those applying for DSP.
In my communications with the department I have been made to feel embarrassed and frustrated over the phone and in person numerous times. From being asked asinine questions such as if my “degenerative lung disease” will improve over the next 24 months and being told that I should work until the point where hospital outweighs all other aspects of my life I became very despondent with the situation at hand. Upon the presentation of my medical history to Centrelink the statistical evidence that I, and my medical team had provided which proves the degradation of my lungs has been continually ignored. Instead a rubric based upon anecdotal evidence is preferred by the assessors with questions regarding my gardening capabilities and whether I can walk home from the shops used to assess my health issues. This is incredibly embarrassing and demeaning as it questions my integrity as a disabled person. To add further salt to the wound all associated issues that come from living with a chronic illness such as the emotional ramifications are ignored and not treated to be part of the holistic wellbeing of a person to the point where I was questioned if my documented mental health issues were real and genuine. Putting already disabled people, people dealing with losing their jobs under this stress and forcing them to justify their illness beyond reasonable measures is sadistic and this has to change. As it stands, I am still in the process of being approved for the DSP and am waiting upon further contact to notify me of my claim.
Yes, I have received interim payments, and for this I am thankful, however, the associated costs of living with a chronic illness such as medications, transportation and diet specific foods has left me in an incredibly vulnerable and uncomfortable financial position. When you add to that the emotional stress, and the overarching feeling of being undervalued and dehumanized by a seemingly sadistic system has left me, my family and loved ones in a depressed state.
A change has to be made to make these social systems more accessible for all disabled people. I speak from my perspective of having CF, but, I am aware that there are hundreds if not thousands of people in our nation who live with their own afflictions who have been compromised and made to navigate this hard to access system. I urge the Minister for Health The Hon. Greg Hunt and the minister for human services The Hon. Michael Keenan to discus this matter and meet with disabled people; young, old, inherited or accident to gauge how the system makes us feel and live. Please work with us, so we can be proud and active members of our communities.
EDIT: I have received contact from my local member for Brisbane Hon. Trevor Evans to arrange a meeting to discus my petition and to start talking about the issues at hand with the hard to access DSP.
EDIT: In light of so many sharing their stories of how they have struggled to access the DSP I have made a dedicated email address, firstname.lastname@example.org for you to bravely share your stories. I am going to collect these so when I meet with decision makers I have a strong portfolio covering a wide range of illness and impairments in order to show how these issues with access affect many people from all walks of life.
EDIT: Upon receiving communication back from The Hon. Dan Tehan I have been advised to address this petition to The Hon. Michael Keenan MP also as this is an issue which falls under the Minister for Human Resources.
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