From: To: Community Affairs, Committee (SEN); Subject: Spam: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Thursday, 17 January 2013 11:45:05 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.
Thusfar the disability system has not worked for us, my husband is legally blind and has multiple sclerosis. The system doesn’t work because officers don’t listen to the disabled point blank they are patronised and spoken down to. “We know what’s best for you” They simply don’t. What we need is practical assistance where we don’t feel like that we are bludging off the system..ie his internal thermoregulation is shot, rather than the medical health electricity rebate which really doesn’t cut much off our bill it would be more cost effective to give us a 10kw solar system as a one off, that covers our power use over summer and contributes back to the community via putting power into the grid and can the power rebates which trickle away ad infinitum. That way we cover our own costs and give something back. We asked at one stage for two handrails near the bath to be installed (I am not a builder and don’t know how to drill through tiles and install them properly and safely), the occupational therapist wanted to rip out our bathroom and replace everything at a huge cost because it involved modifying half the house to suit..so we learned a lesson ..not to ask for help that we need.(It would have cost us over $10000 as our contribution and the government around $20,000) The point is we asked for something inexpensive that helped my husband get into a bath which he loves. Anything with the department is done to a formula which does not suit most people. Throw formulas and theory out the window it doesn’t help. Patronising attitudes ( especially to someone who taught linguistics at a Masters level for a time ) don’t go down to well. My husband became very depressed and angry about it. It is hard enough to deal with going from an achiever to a non achiever but to be spoken down to is over the top. A person in our community was put on the NDIS trial, her parents were given money for holidays etc and her son was given an iPad..she wanted a decent washing m achine. Yes it helps to keep her parents who care for her sane but a washing machine helps her carers keep her clean..it is a no brainer. Stop all the negative press about the disabled and those on pensions etc it turns the community against those who need the help the most. Give us back our dignity, get rid of all the groups that cost money for glamourous magazines like Carers which so far as I can see employs a few people to sit around an office and pontificate, there is never help or assistance for Rural Carers, all functions are held in Sydney and cost hugely to travel to so the whole system is a waste of time. Similarly the Blind Society, MS Society and all of the other so called help organisations where money from the government and donations goes to support jobs of telemarketers, advertising and admin and never gets to those who need it. I can speak from experience and say that all we have ever heard from any of them despite belonging to them is how much do you want t o donate? (Usually canvassed at evening meal time and interrupting the whole house) Recently I asked a telemarketer how much they earned , how much they get from canvassing calls, how much the advertising costs and then said to them would you like to donate money to us because all it did was give them a job. They were quite rude. Please consider having one central agency for all donations centrally run it as a system through the ATO where donations are automatically added to the givers return info so no double dipping fake receipts etc and employ a few not hundreds of people to do the computer processing and get the money back
where it is needed most. We don’t need glossy magazines that have a victim mentality and does not address all areas of disability etc equally. eg. You read a lot about carers of children but not how hard it is to care for an intelligent adult who bucks the system and would rather cut their hands off than ask for help. People have pride. Everything in t he system works for those in the cities and whilst the higher concentration of disabled is there there are also the isolated rural folk who need a little more than scant lip service.
The main features of the NDIS that will make a difference to the community are:
People with a disability can choose the types of support to use, People with disability can choose who comes into their home, Increased ability to coordinate services to suit the “whole” person/family
The most important services for the NDIS to provide are:
Equipment and home/vehicle modifications, Support for families and carers, Flexible in-home/outside home respite
I support the introduction of the NDIS.
I support the scheme if it is instuted properly in a way that does not cause the disabled or carers to be discriminated against in a cost effective way. My husband has Multiple Sclerosis, is legally blind and has huge difficulties with balance but is also highly intelligent. Which makes for a formidable patient. We need help which allows him to feel not like a bleeding heart. I have tried three million different ways to make it easier for him to use the computer but rather than use the screen readers and voice controlled programs like Dragon he is so fiercely independant he just makes the words on the screen bigger and sticks his face right into the computer. That is the sort of thing disabled people often have to cope with, not feeling like he is a bludger..He hates the media attitude that makes him feel like a burden. Hopefully a well run NDIS would see all of the stigma disappear, not over employ huge amounts of public servants that make the whole scheme top heavy.
I agree for my submission to be made public