Submission No 154
INQUIRY INTO IMPLEMENTATION OF THE NATIONAL DISABILITY INSURANCE SCHEME AND THE PROVISION OF DISABILITY SERVICES IN NEW SOUTH WALES
Name: Name suppressed Date Received: 26 July 2018
Partially Confidential
I am a divorced woman, aged 47,tertiary educated, with two young children and have been a paraplegic since a non-vehicular accident in 2009. In the accident I also suffered head injuries, and while my critical faculties are intact the injury impaired my eyesight so I am unable to drive myself. I also lost the sense of smell. My former husband and his new partner care for my two children most of the time, but I see them for a few days every two weeks, at which time they stay with me. I am mostly independent, but do rely on trained, qualified and competent carers daily for personal care, I live on my own in a family owned apartment.
The NDIS was a grand scheme in scope and in theory, however, for people such as myself, the practice has been disappointing. The principal problems are insufficient trained, competent carers who are formally qualified to care for disabled people; and, as with the several findings on nursing homes, the wages paid are unlikely to attract, much less retain, qualified people. Until these two problems are addressed and not paid lip-service, the NDIS will never live up to its promise.
I turn now to the administrative side of the NDIS. The people working the phones at NDIS are not trained in disability and are unaware of the urgency attached to some requirements; such as parts for, and repairs of, wheelchairs on which so many people like myself are entirely dependent. A wait of two years to gain approval for the replacement or repair of disability equipment is not unusual. This is simply ridiculous. If a person has no family or friends to step in in dire circumstances, the disabled person is entirely abandoned during the lengthy hiatus in request and delivery. Advertisements for jobs at NDIS only require a person to possess “disability awareness”, this is manifestly inadequate - they need to have at least WORKED in a field of disability health, such as nursing, physio or occupational therapy, so that they at least have empathy through experience..
The Local Area Coordinators (LACs) who are assigned to every client through do not assist at all as they do not have an NDIS contact they can liaise with, one-to-one, to help solve problems the NDIS client is having - and which may be urgent. A critical case is regarding funding approval and the time and bureaucracy involved in obtaining even the most basic care that the able-bodied take for granted. I have found that I am left to advocate for myself due to the disconnect between the LAC and NDIS. There have been occasions I have been left without carers for days.
The other significant problem is the lack of continuity and consistency in the quality and delivery of care. Over 9 years, well before the NDIS, the rotation and loss of both qualified and unqualified staff from several agencies I have been with has been substantial and deeply unsettling, especially when you are relying on people for quite intimate, personal care. It seems to me that those planning the NDIS should have scoped the existing deficient environment, because if they had they would not have initiated a system which replicates those deficiencies.
Finally, the needs of disabled people vary considerably as does the nature and extent of their disabilities, so clearly one size does not fit all, and I understand the government has to be careful in ensuring the system is not rorted by either unscrupulous clients or providers. However, while I am not in the highest category of disabled persons, I am dependent on caring empathetic, qualified professionals to help me be as independent as I can be daily. For me many of the simplest tasks that the able bodied take for granted are a struggle. I say this not to engender sympathy, but for the committee, the parliament and the wider community to understand that if the intention was truly to make the NDIS a system which alleviated some of the burden on the disabled then it must, as a priority, be properly funded and staffed.
It cannot continue as it is. Thank you for the opportunity to make a submission.