Submission No 338

INQUIRY INTO IMPLEMENTATION OF THE NATIONAL DISABILITY INSURANCE SCHEME AND THE PROVISION OF DISABILITY SERVICES IN NEW SOUTH WALES

Name: Mr Adam Hewber Date Received: 8 August 2018

NSW Government Inquiry

Whilst I am not a resident of NSW, I am a director for PWDA, a peak organization with representatives across the country, and with its headquarters in Sydney. I also have a living experience of lifelong disability.

What services are there for people with disability who aren’t eligible for the NDIS?

People with a disability who are ineligible for NDIS services may be able to access a limited range of services through the Department of Social Services (DSS). Some funding may also be available through some benevolent societies, and in some cases small and specific claims could be made through Medicare.

There is a general lack of services that are available for people who have mental health issues. This hidden type of disability is a growing problem which is not adequately addressed. With increased societal living pressures, and through isolation, people often self-medicate either by over indulging in alcohol or drug use. This is often the precursor to other and more serious forms of disabilities later on.

How are mainstream services, like health, transport and education, working for people

with disability in NSW?

Health services: Waiting lists to access hospitals are often too long. This also applies for the

rest of the country. For instance, I have been waiting to be re-assessed regarding my Epilepsy and a cist on the brain that I have had since birth for fifteen months. Five months after a referral to a second hospital, I am still waiting for a appointment at Western Australia’s most modern facility, Fiona Stanley.

In 2009, I had a personal experience with the NSW health services, after severally injuring my right forearm in a fall. In the accident a large section of the flesh was torn away from the bone, I was taken to West Mead Hospital by ambulance. It was only the fourth day I had surgery. The excuse was that they had more urgent and pressing cases to attend to. The room that I was allocated after the surgery had sections of the ceiling missing, and a second patient in the room in the room had a golden staph infection. In desperation my father removed me from West Mead Hospital after surgery to return to Western Australia.

Transport: Depending on the type of disability, not all public transport is accessible to people

with an impairment. Funding for taxi use and/or wheelchair transport services should be available according to everyone’s needs to allow them to attend appointments, access community services, and interact with friends.

Education: People with a disability should have equal education opportunities. Current

funding restraints often limit the ability to deliver equal services for all. Education services for children with complex needs should be adequately funded or, they must be educated separately. From my own experience, being taught in education support units for 11 years, I found that the teaching degenerated towards the lowest common dominator, which amounted to learning life skills. After leaving High School It has therefore taken me another twenty years to self-educate, by attending TAFE to acquire an Advanced Diploma in Fine Arts, a Diploma in Counselling, and a BA in General Arts at Murdoch University.

Employment: In our society, the lack of employment for people with a disability is a prime

example of disablism (a form of discrimination). Many Government services as well as private enterprises employ few people with a disability, due to perceived safety risks or similar

excuses. Many of the NDIS staff are able bodied. One wonders if some of the positions could not be filled by persons with a disability.

What will happen to disability advocacy, representation and information services, like

PWDA?

NDIS is only as secure as the political will that supports it. It is Imperative that structures are in place that lobby successive governments and political representatives for bipartisan support to retain the services of the NDIS as it was originally intended. It is commonly accepted that business is represented by the likes of the Business Council of Australia or the Chamber of Commerce, and workers are represented by unions. It is then reasonable to expect that people with a disability are represented by an organization that looks after their best interests.

It has been said that under the NDIS scheme there will no longer be a need for advocacy as a reassessment process is available. On the contrary, people with a disability often require an advocate to speak on their behalf. Some of them are often very shy, and others are up-beat and do not realize the severity of their impairment. They are also less critical when judging their limitations. To be accepted by the community they often enhance their capabilities, which could severely affect their NDIS assessment. The other issue is that people with severe and complex forms of disability often do not have the capacity, the network, or supports required to adequately express their needs.

housing? Will large institutions be closed?

Group homes are ideal of housing those who need limited attention, or where the individual skills of occupants can be utilized to help others. In addition to group homes, more state funded or privately funded, subsidized housing for those who live in a relationship or have the capacity to live alone. The acceptance of the social model of disability by our Australian society has brought many benefits. There will always be a percentage of people that will require specialized care and attention and the safety of a controlled institutional environment.

How will people with disability have their say about NSW Government decisions in the

future on the issues important to them?

Numerous groups, institutions and organizations are registered as advocates for people with a disability. Only a strong systemic disability advocacy organization can forward clear messages to the Government. If this is followed up by a reference group that includes disability advocacy as well as representatives of service providers, it could prove a valuable resource that needs to be considered.

An additional point to be considered by the government: Professional services usually

require some form of qualification. Disability carers must not only be trained to look after their own safety and the safety of their clients but must also be able to display empathetic understanding when dealing with their clients. Sadly, for many the position of a carer has been a job of last resort. When visiting friends with a disability, I have often observed carers not arriving on time, not being attentive of the clients needs or showing empathy and compassion, and some will just sit and watch TV while they are there.