Achondroplasia and Chronic Pain Research

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17th November 2016: To the Australian Government, to date, you have classified myself as a Pensioner but I do not have access to the Disability Support Pension. You claim I owe $4K+ because your electronic program is incorrect and your Compliance Officers display 'no integrity'. Today, I have just completed my fortnightly budget. I have $50 and I have to make the decision to either spend this amount on food or on medication. You call yourselves the Department of Human Services and yet, I am still to experience any form of humanity from your sectors.

Dear All,

Changes are required from the Australian Government!

My name is Yana and I live in Perth, Western Australia. I was born with Achondroplasia and I have spent my life educating people about my condition (FGFR3 genetic mutation). Hospitals are my second home and as there is no official ‘Achondroplasia, Guide To’ book, it becomes incredibly frustrating when needing assistance. Yes, even the Specialists have admitted to the uncertainty of positive outcomes regarding my treatments at times.

In the last two years my health has deteriorated significantly and I am showing signs of irreversible Palsy if I cannot receive treatment A.S.A.P. For the moment, I get around with the assistance of crutches. My biggest challenge will be getting used to the idea that I’ll be spending the rest of my life in a wheelchair as my body continues to degenerate. I have periods of spending days in bed because I find it difficult to walk. Over the counter pain relief is inadequate.

I have tried my best in living an independent life but I am at the stage now where I have no other choice but to ask for help. I need help from the Australian Government AND I am seeking further support from individuals whom may appreciate…and perhaps later benefit?...from this goal I am trying to achieve.

Last April, I lodged a Claim for Disability Support Pension. From the initial Job Capacity Assessment Report conducted 12/05/2016, a Registered Psychologist indicated ‘condition is considered fully diagnosed, treated and stabilised. Genetic condition which required symptomatic treatment’. This statement was agreed to by a Registered Occupational Therapist, not present during the assessment. I am a person that meets the Disability Score Tables but was REJECTED for a Disability Support Pension. Why?

*** As of 01/05/2017, my 'Unexplained Debt' has now been resolved ***

At the end of last year, I was also targeted by Centrelink and incurred an ‘Unexplained Debt’. I am not going to write too much about this as there is ample information made available via the World Wide Web. I am a person deemed by Centrelink’s ‘Compliance Officers’ as an individual not owing the Australian Government any monies, but this ‘Unexplained Debt’ and it’s ‘Repayments’ are being ‘garnished’ from the Newstart Allowance I am currently receiving. Why?

*** As of 01/05/2017, my 'Unexplained Debt' has now been resolved ***

On Monday 27/03/2017 I received a phone call from my Disability Employment Services Provider. They had received the ‘outcome’ from my latest Job Capacity Assessment. They indicated I have been given a looking for work exemption ‘til 22/11/2017. My DES arrangements are now in a ‘suspension of service’ and all contact with the provider has now ceased. Again, I am a person that meets the Disability Score Tables and my second (2nd) application for the Disability Support Pension has been SUSPENDED. Why? Please note, I have not received any communications from Centrelink indicating 'the above' TO DATE.

Now, one thing that’s VERY GOOD about the Australian Government is MEDICARE. It’s just plain unfortunate that the procedures covered to treat the various ailments I have, are actually detrimental to my condition. They will make me worse! And, at only 33years of age, I am deemed ‘too young’ to have my joints replaced. Yes, it is frustrating.

As you may appreciate, my health has not allowed me to be financially independent and, the allowance I do receive is already ‘below poverty-line’. With your financial assistance and an incredible amount of faith, my plan is to raise ten thousand dollars (AUD$10,000.00), so I may have administered pioneering stem cell procedures. This amount will cover my hips and knees and most importantly, I am hoping this procedure will allow me to enjoy some time on my feet, without the associated chronic pain!

I have asked for help from the Australian Government. My life has been in suspension since 2015 and, despite all requested documents being supplied on many occasions to various people, no decision has yet come to light. I am suffering financially and physically. For the last two years, I have been looking for a decision after all factors have been duly considered. So many people have given me 'their version' of what the outcomes should be but nothing has ever been put in writing. No action appears to have been taken to rectify any errors. The saga continues and I am being penalised for continual gross inefficiency. It is my wish that from my experiences, I can assist in making available better healthcare options for people with my condition.

Thank you for your time.

Yours Faithfully,

Yana A

P.S.
I have been advised by my local GP to reach out and create this petition.
This is my social media/facebook link: https://www.facebook.com/AchonChronicPain/



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