Disability Pension and HSP

Posted - March 2014 in Your Say

Request for information and advice

Last year I applied for a disability pension. I have osteoarthritis in my back and my left leg and it was getting very sore especially when walking. My doctor referred me to a neurologist and she did some MRI tests. I received a letter from Centrelink saying my application was refused but that I can present more evidence. The neurologist told me that I needed to see a second neurologist because she thought that I may have Motor Neurone Disease. The second neurologist diagnosed HSP and told me that I might end up in a wheelchair. It was a bit of a relief to know that I did not have MND which is more serious.

So I went to Centrelink with the doctor’s report that I have HSP. A review officer then called me and said that my claim for the disability pension was rejected again. I asked him if he had any idea what HSP is and he said no. I was in shock and said to him how can you refuse something when you don’t know what it is? I would very much appreciate hearing from people who have experience with the disability pension.

Thanks for any information or help
Corina

Comments on this story

Anne posted at 5:37 pm on 7 April 2014Reply

Hello Corina

My employer has suggested I apply for the disability pension and am going thru the procedure but haven’t actually lodged my application. Did you spell out the condition in full (hereditary spastic paraplegia) or put HSP on the application?

Anne
Corina posted at 8:58 pm on 8 April 2014Reply

I wrote the letter saying that I was diagnosed with Progressive Spastic Paraparesis !! That was the diagnosis of Dr Neil Griffith ( Neurologist )
And the person that reviewed my claim did not know what it was !! I appealed the application and now I’m waiting for the response. Thank you for your response !!
david posted at 3:10 am on 1 August 2014Reply

Hello Corina

I had the same experience with centrelink . I was refused disability pension even thought there is no information on their system .

David
Helga posted at 10:53 pm on 18 August 2014Reply

Hi there,
I was diagnosed with HSP 12 years ago and I had to undergo a huge amount of tests incl. MRI’s, CAT scans etc. as well as seeing at least 4 different neurologists in private practice & hospital as an outpatient. Centrelink made it pretty hard but in the end I had my claim approved in spite of the ignorance around of what it is like to be afflicted by HSP. That was 12 years ago though and any kind of social support has been scrutinized since then!
Emily posted at 12:34 pm on 25 August 2014Reply

I had a lot of trouble with being approved for disability support pension, had it rejected 3 times. I changed my GP and he knew some of what they look at when assessing, it works on a point system from what I understand, and when I went up for review this year I was asked about if I was still receiving botox injections, and that was one of the reasons I was approved. I let them know recently I take baclofen, so if you’re taking any medications let them know. Also if you have any anxiety or depression, that is also taken into consideration. hope this helps 🙂
Scott posted at 11:22 am on 9 September 2014Reply

Hello,
I have had a problem with my legs for around 10 years.
Just recently, after years of tests, a neurologist has diagnosed me with HSP and strongly advised me to go on the DSP.
I have been rejected twice and now must go to a SSAT tribunal.
Just inquiring if you have any advice that would assist me?

Thank you,
Scott
Roy posted at 12:28 pm on 19 November 2014Reply

I have not yet been diagnosed with HSP but seem to have similar symptoms. I have seen numerous specialists over the last 4 years but they are still not confident to give me a specific name, probably an upper MND. I was refused DSP initially but was approved by the Appeals Board. It is correct that you are assessed through a series of tables and have to get enough points. Details of the tables are available and need to address them specifically. Part of my argument was the fatigue problem ( a different table) as well as the mobility. I had fantastic assistance from a person from “Disability Rights Advocacy Service” here in SA who helped with forms etc and attended the hearing with me. It is a free service funded by Government. I suggest you approach them.
Ian posted at 8:46 pm on 13 March 2015Reply

I understand the need for some people to have financial support in their lives due to severe disability but the question I ask is this. Why is HSP (uncomplicated) seen as a disability? Certainly there are some limitations in life but surely disability is self defined and not defined by a medical condition only?

what do others think?

Ian
Sharon posted at 11:49 pm on 19 April 2015Reply

Hello. My situation is different to your’s (Corina, David, Scott, Roy but I was told by my support person to push for a disability pension. It took me three goes. I have Complex Post Traumatic Disorder fully diagnosed and assessed. I also suffer with osteo arthritis in my neck, spine and my hands are failing me having to attend hand therapy and have a splint made. With Centrelink here in Victoria you have to have 20 points in their point system to be eligible. You people sound a lot worse off than me. As for Ian. Trouble is ie my situation I cannot determine from one day to the next when I will have an attack or if my hands are going to pain me so I cannot even butter a piece of toast but next day can? My PTSD symptoms come and go and looking at me you would think I am normal and capable but suddenly something can happen in the midst of a day ie like being at a Centrelink appointment having to look for work on Newstart. I sat having an attack and two “lovely” Centrelink ladies rushed to my aid and sat with me through my attack and noted my condition. I had no control over it as with so many people with disabilities!!!
Laurie posted at 12:04 am on 22 May 2015Reply

My wife Maree was diagnosed with HSP some 3 years ago. Her cousin (male) has HSP (diagnosed), an aunty certainly showed similar walking issues.
For Maree her situation has steadily deteriorated. Prior to her diagnosis her GP supported her claim to Centrelink and we went for the usual interview. The interviewing doctor had remarkably studied HSP and it was part of her thesis. What normally would have been a long interview was over in 15 minutes and her recommendation was to support the claim which was duly accepted by Centrelink. Clearly we struck the right person so my advice is don’t give up because there is now evidence that it is recognised.
ron posted at 4:32 pm on 8 November 2015Reply

hi all I found it very hard dealing with centerlink. I do understand they need to be diligent as there are a lot of people out there that may take advantage of the system. it took me a few goes and a lot of evidence from different professional people but I am now in the system. its taken almost two and half years, now I have this horrid hsp to live with.

cheers 🙁
David posted at 2:18 pm on 18 December 2018Reply

My Sally has HSP and passed it to both her kids, She became their carer till the passing of her son at the age of 22 in 2007. Sally was reliant on a wheelchair from 1995 and looked after both her kids including their personal care. Both her kids were on disability pensions for HSP from age 16, Sally claimed carer payment for her son.

When he passed she went to Centrelink with me and we saw a centrelink worker and a Medical professional that they had brought in for the interview. As usual the same question was asked “what do you think your disability is” even though the forms have been filled in by the GP. I said Sally has HSP, the reply was “never heard of it”. My reply was to reach into the bag behind Sally’s wheelchair and hand them the information I had printed off three different sites including this one, about 30 pages all up and said “we knew about this appointment for three weeks so you knew about it as well, but I knew you would not look it up, take these”. Sally’s pension was granted the same day and we have never been asked to go back for a review.