NDIA Accountability Project

Difficulty accessing equipment and support due to rare disability

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Spam: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012

From: To: Community Affairs, Committee (SEN); Subject: Spam: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Friday, 25 January 2013 10:00:46 AM

Please consider this email a formal submission by me to the Senate Standing Committee on Community Affairs Inquiry into the National Disability Insurance Scheme Bill 2012.

The current disability system has many problems that need to be addressed.

I have Hereditary Spastic Paraplegia (HSP) Complicated which is a rare disease consisting of 47+ neurological disorders that run rampant in my body and that can not be controlled as there is no medication for it but only medication to try to help assist with the symptoms.

I have no support at all due to its rareness there is only 1500 cases of it in Australia so unlike MS and SP patients I have to fight tooth and nail by myself with no help from any organizations unlike Ms and Sp people who can get help and support and equipment from their respective foundations, even though most of my symptoms are exactly the same as MS and SP combined. I can’t even get a Specialist to look after me medically I have to do it myself with the help of my GP because all of the specialists as working with MS and SP organizations cos thats where the money is and they have openly told me that.

I have to fight to get equipment. At the moment I am living in a DOH house and one of my symptoms is not being able to control my body temperature and I can’t get the DOH to install air conditioning so I can live a normal life like you and be comfortable in my own house, I have to take showers hot or cold depending on my body and sit in front of the heater for a few hours because the DOH refuses to install an IXLtastic in my bathroom for when I am feeling cold when taking a shower. Even my OT and my doctor can not get them to help me even with proven medical facts about my disability but if I had MS or SP I would get it due to the foundations and the current system giving them all of the help and funding and support they need and I get nothing.

Everything I have in the way of equipment I have either had to buy it myself or beg on my hands and knees to private charities and organizations like Karingal and Pinarc etc for donations, I recently finally got my electric wheelchair it has taken me over 2 years to get the rest of the funding after the SWEP payment of $8,700 to pay for my $19,000 wheelchair. And now I have to replace my 13 year old manual wheelchair but I can’t get any funding for it with SWEP as I got the funding for my electric wheelchair so under their system I can not get any funding for my manual chair which is yet another cost to me of $3,000 that I am going to have to beg and save for till I finally can afford to get it, hopping that in that time my manual chair that I use and is 13 years old and that I can’t afford to get fixed doesn’t die on me in the meantime.

The main features of the NDIS that will make a difference to the community are:

  • Ensure support and equipment is available when needed,
  • People with a disability can choose the types of support to use,
  • Better access to mainstream support and services,
  • More rights for people with a disability,
  • People with a disability can plan their lives and pursue their goals and dreams,
  • The ability to receive services when needed and in the way that suits the person,
  • Minimising the number of times people have to tell their story in order to get support,
  • Less red tape, with

Planning Done Locally By People Who Know Their Community

Access to reliable information about support options

The Most Important Services For The NDIS To Provide Are:

  • Therapy and allied health services,
  • Equipment and home/vehicle modifications,
  • Education support (technology/services/equipment),
  • Life-skills,
  • Recreation and community access,
  • Support for families and carers,
  • Accommodation options,
  • In-home care and domestic assistance,
  • Case management, planning and coordination,
  • Crisis and emergency support,
  • Positive behaviour support and psychological services

I support the introduction of the NDIS.

This system is needed so I and others can live a normal life like everyone else as that is our right and not having beg for help and support and getting every door shut in your face because you are not in an organization that pays out big bucks to doctors etc because you have the wrong disease that has no support at all.

I agree for my submission to be made public

Regards,

Mr Eugene Hall