SUBMISSION re

INQUIRY INTO THE DISABILITY DISCRIMINATION ACT (1992)

To:
The Productivity Commission
LB 2 Collins St East.,
MELBOURNE. VIC. 8003

Writer;
Mrs. Jean Young-Smith
	Dip.Soc.Welf.
	Grad.Dip. Ad. Ed.

25th August, 2003
NT.

INTRODUCTION:
The Legislation of the Disability Discrimination Act in Australia in 1992 gave great hopes to people with Disabilities and their families, in overcoming obvious and also covert areas of discrimination, this vulnerable group were subject to.

Unfortunately, the DDA thus far has failed to meet the overall objectives of eliminating discrimination, promoting change with education community attitudes and to enshrine equal human rights for those persons with a disability! rights that every other Australian just takes for granted, yet, people with disabilities are still being denied, despite Legislation being in place to overcome this injustice!

Despite DDA good intentions covering: Social, Environmental, Educational, Legal, Health, Medical, Employment, Welfare, Access, Sport/Rec./Club Assoc. and Equity before Law, there are perverse deviations of DDA, in dissention by many services. 
Governments needs to care in practice as well as principle.! Viz.; Young disabled people living out their lives in aged care facilities‑ nursing homes which Governments pay lip service against but makes no real provision to alleviate such aberrations ......

In March,2000 John Scot, aged 13 years and intellectually disabled, a then resident of the Stockton Centre,(NSW) died after being admitted to a local Newcastle Hospital. The Stockton Centre is dedicated to the care of ADULTS with Dementia! The Coroner condemned both the State and Federal Governments for their lack of action to provide adequate service for children with Disabilities !! This indeed was gross discrimination for young John Scott and could have escalated his early demise.

The Disability Services Act. (Fed 1986) states in its Objects for Development of Services of Programs and Services for people with a Disability (Part 4 No 18). ‑ "No single organisation should exercise control over the whole of life services of a person with a disability."

2

The States and Territories have included such premise in their own DSA to enable them access to Federal CSDA grants to states, YET Part 4, No 18 is ignored by many services at present ‑Australia wide, especially in Queensland.

UNJUSTIFIABLE HARDSHIP.

General Problem Issues.
Terminology covering definition is overly broad e.g. ‑ Many people feel psychiatric illness is indeed that ‑ an illness not a disability which can effect recovery and return to normal lifestyle ! Thus in many instances an ongoing permanent spasmodic illness. DDA Act could be more explicit in this area of terminology.

Terms of Reference makes no mention of "well meaning " discrimination which occurs daily in the lives of people with disabilities.

In fact when occurring at staffing level in services could be/has been life threatening with staff of no experience or knowledge of disability. This runs parallel with DDA Objectives distinction between behaviour attitudes ‑ thus needs better clarification.!

Equality before the LAW
Federal Govt. pension recipients of Age and Disability benefits show stark disparities.! Those people born with disabilities have never had any chance/or able to work to earn to save, to own any assets allowed Age pensioners. Viz. Age pensioners are allowed to own a home around $500.000, plus caravans, boats, motor vehicles/trailers etc., Yet BOTH aged and disabled (despite disabled having no other assets)can only have approx., $700 in the bank to be able to receive help from Legal Aid. E.g. Case of Duty of Care Negligence (Family member of writer. Application for Legal Aid was rejected as disabled person "had too much money "!! ?This person is severely disabled since birth with multiple disabilities. All she owned in this world was a small television set, her mother bought for her room and her bank book with fourteen hundred and fifty dollars ($1,450) and no other assets as allowed age pensioners ... Age pensioners are more able to adjust their assets than this disabled young lady she had double the amount allowed for cash and thus was denied her chance of litigation for really bad neglect

3

horrific injuries and permanent damage to her tongue. Why isn't there more disparity re no assets and little more cash allowed in such instances to effect equity and justice for disabled young people. The only way this young woman had cash in the bank was due to the mother putting any birthday monies her daughter had been given over the years and saving some of her own money for her daughters future welfare. Surely legislation has to be adjusted to alleviate such grave anomalies.?

Competition and Economic Effects.
Governments and providers of goods and services all accept apprentices in all trades and legislation requires at least three (3) years of training and experience for trainees. Yet there is still no set guidelines or policy for intellectually disabled young people to enter an apprenticeship of their own choice and ability. Overseas research of many years has shown this to be successful, given needed resources and supports.!

EXAMPLE: ACCORD PROGRAM DARWIN NT. (early 1990's)
An intellectually disabled young lady with Angelman Syndrome given opportunity for work experience (no wage) at Red Rooster, Darwin with a support worker. After 5 months in the kitchen, preparing chickens for cooking, buttering bread rolls etc., she had progressed to "chaining" part of her program training. This means the support worker instructs worker what has to be done and leaves disabled worker on their own merit initially for one hour which progresses to two hours and so on. The disabled person was doing extremely well after the two hour stint. all the set work was performed to scale. It was then the Federal funded project was discontinued and funding stopped. ? This young person was denied the opportunity to be fully trained and be able to work ‑in her case part time , which would have given her a small additional income and enrich her quality of life and enable her to make friends away from "disability milieu" most of us meet people and make friends in a working environment and community surrounds.! Why not consider such unique opportunities for disabled young people and combine Federal, State and Territory Disability Service Legislation with special provision for SPECIAL extra ordinary needs of Disabled youngsters who have their whole life before them. It demonstrates societies lack of initiatives and needed priorities to this neglected group. We have to be aware all human needs are similar.

4

COST EFFECTIVE.

2.4 Disability Standards
This area has been a Mish Mash of Bureaucratic ineffectiveness. This writer has been a member of Federal Disability Standards appointment since inception. In a word it is working hypocrisy at its zenith. There has been no meetings for some years. With no explanations to members why ?

Personal Experience: 
a) Recently I reapplied for Taxi Discount Voucher for my severely disabled daughter, now 37 years of age, when I returned to NT after being in Brisbane for some prolonged orthopaedic surgery not available in Darwin. Prior to leaving Darwin she had been receiving taxi vouchers within the Health Dept. system. Despite still having a current book from Qld. And being on computer archives here, we had to start from score one again. Fill in 4 pages of questionnaire, take her to the Doctor for verification of her disability. (I might say the Dr. does not Bulk Bill Disability Pensioners but does Age Pensioner, thus it cost her from her pension for this duplicated requirement) I won't go into the detail of the inefficiency of the department but after several telephone calls as my daughter had to go into community accommodation care as my health broke down and I was unable to drive her to her program and other needed facilities. I am very angry that she has been now granted "TEMPORARY access" to Taxi Discount and has to go through all the bureaucratic process again in 12 months time. !!? It appears they think Angelman Syndrome is a temporary Disability, despite the required GP form duly filled in and despite the fact I also sent on my own initiative a medical certificate from specialist Neurologist at Royal Darwin Hospital

Remembering my daughter had been a recipient on the NT Taxi Voucher system for Disabled person since we arrived in NT in 1989. It is very unjust that we have to go through the bureaucratic process again to be told this time she has a temporary access to the scheme,(when she has a permanent disability,)then to go through it again in another twelve months.

Angelman Syndrome is a severe and rare disability. Incidence rate of one in 20.000 births, with (paralysis of the speech muscle) epilepsy, intellectual disability, and other physical problems.

5

In conclusion I would like to report on a Lifestyle Program that my daughter finally received funding for. This program includes her working (with support worker) in a voluntary capacity for several hours weekly; at ‑Royal Darwin Hospital, St John Ambulance, NTU University, R.S.P.C.A. I am informed by the service organisation that she has to pay $2 per am and p.m. session to them for their arranging for her to do voluntary work in the community.? So she pays $20 weekly from her pension to work in a voluntary capacity. ! I do not know of anyone that has to pay to do voluntary work. Especially when she has a Govt. grant to pay staff salaries to enable her to do this. I have been told by the service provider the NT Govt. Policy is to charge disabled people a session fee. If this is correct, the Govt. gives funding with one hand and takes it away with the other, how insidious.

To meet Disability Discrimination Objectives and truly eliminate discrimination we have to monitor and promote real change to ensure equal and human rights.

There has to be real consequences for those who do discriminate against people with disability especially those with an intellectual disability. Amendments to the Disability Discrimination Act has to include monitors, safeguards and real fines/penalties for persons, organizations and government departments who flaunt in a overt or covert disregard of the Act and discriminate against vulnerable disabled persons.

Writer:
J. Young-Smith