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Jul 9, 2012
James O'Brien

Want to make the sure the NDIS works for you? Have your say with the National Disability and Carer Alliance

Below is an important message from Kirsten Deane from the National Disability and Carer Alliance about a forthcoming consultation on the design of the NDIS.

The National Disability and Carer Alliance wants to hear from you. If you are a person with a disability, a family member, work with people with a disability or are a service provider we want to hear what you think. We want to hear how you want the National Disability Insurance Scheme (NDIS) to look and to work. We want to know how it should work on the ground to best meet your needs.

The Alliance has just received funding from FaHCSIA to ensure people with a disability, their families and carers and specialist disability service providers have a chance to have their say about the design, introduction and implementation of the NDIS.

The NDIS will finally put people with a disability at the centre of the system. But to make that happen successfully people with a disability, their families and carers need to have a say in how it is designed and implemented.

A number of groups have already been established by the government to have input into NDIS implementation. These include the NDIS Expert Advisory Group and the recently established expert working groups. A number of States and Territories also have established NDIS taskforces.

The Alliance project will not duplicate work done by these and other groups – this project is about ensuring people have as many opportunities as possible to have their say about how the scheme should work on the ground so it best meets the needs of people with a disability and their families.

This project is not about the current system – as we all know there is a great deal of evidence about how the system has failed to meet the needs of people with a disability and their families. What we are looking for is what people would like to see done differently in the future – what works well now, what could work well in the future and what would need to be done to make that happen.

The engagement project will take a range of forms. The Alliance will hold a series of forums across the country, including regional areas. Some of these will be held jointly to include people with a disability, families and service providers all working and responding together. Some will be held separately to make sure people feel comfortable and safe and are able to express themselves in a manner that suits them.

There will also be smaller roundtables bringing together people with particular expertise or experience, and for those who find participation in large groups challenging. These forums will give people a chance to talk about and explore in greater detail the issues and questions that will have to be addressed as the NDIS is rolled out. All information about upcoming events will be posted on our website and on our facebook page.

The Alliance will also post a series of information papers on its website over the coming months. Each will tackle a particular issue such as eligibility and assessment, or choice and control. The information papers will provide a very simple and short overview of the issue and ask a series of questions – some open ended, some more directed. We will be asking people to respond to the questions.

Feedback from this engagement project will be provided to the Federal government for consideration as the NDIS is designed, introduced and implemented. We want to make sure that as the scheme is rolled out, the voice of people with a disability, their families and carers and specialist service providers is heard loud and clear.

The Alliance has only just received this funding. We are currently rebuilding our website and the facebook page to make sure as many people as possible have the chance to participate. We are also locking in the dates for the first round of forums. We expect them to begin mid-August.

In the meantime you can send an email to info@disabilitycareralliance.org.au and we will make sure we keep you updated with where and when things are happening.

It is true to say that at the moment there is a fair degree of “consultation exhaustion”.  People in the disability sector feel endlessly consulted – so it is understandable that people feel daunted or exhausted by process of having to fire up again. But from beginning of the campaign people with a disability and their families and carers have rightly argued that their lived experience must be central to the design and implementation process. This project is one mechanism to make sure that happens. The Alliance is therefore anxious to ensure that as many people as possible have the opportunity to participate. So we look forward to seeing many of you at the forums.

7 Comments

  • We the Disabled & our carers desperately need financial help as we are always seeing Drs & Specialists all our lives & the cost of out of pocket expenses leaves us financially with nothing to live on as we “have too travel to Brisbane on regular basis. It costs my mum nearly $100 every visit ie- petrol & parking.. Please help us where in crisis mode. Yours Truly Diane & Tahla. Thankyou

  • My 7 year old daughter has developmental coordination disorder ( DCD) sometimes called dyspraxia; in addition to ADD and dyslexia. Medically she is blind in one eye and has coeliac disease and is on a lifelong gluten free diet , as am I and her 5 year old sister: we are all coeliacs. We receive carers allowance, $114 fortnightly plus annual extra payment of $1600. I am most grateful for this money. It goes towards paying for our once weekly trip to see her learning difficulties tutor whom we see on weekends. At school there is however NO support , and time and time again her teachers comment that she requires one on one assistance in order to learn. I am working 3 part time jobs to help pay for the extra allied health expenses (speech and occupational therapy) but need to manage this in addition to the workload of paid work plus household, plus the needs of the rest of my family.

    I also must manage to take my daughter to her multiple medical appointments as part of this schedule, as well as try and.fit in the daily homework from all these therapists…and organise/pay for childcare. We use a live in au pair at $150/week ( no government subsidy) and full board. I endeavour to try and give my daughter opportunity to have some unstructured playtime, some down time and a chance to follow an interest or two of their own, eg. Girl guides.

    I really hope that the ndis affords children and families like ours to enjoy more coordinated and locally provided care wrt. health, education, childcare and therapy/learning support. I feel that currently support for kids with learning/attentional dysfunction is sorely neglected and we need to improve across all the above mentioned sectors. Thank you.

  • Thank you for the information. I look forward to receriving more information and would like to be involved in discussions with other people who have a disbility so that we can take every opportuinity to assist in making the NDIS happen.

    Anne Keane

  • The NDIS should encompass a mandatory superannuation and savings component. This fixed sum should be managed early on by a financial broker and managed like an investment portfolio. People deserve light at the end of the tunnel that is lifelong reliance on handouts.

  • I quote from Ghandi;

    “A nation’s greatness is ultimately judged by how it treats its weakest and members”.

    Our weakest need more help.

  • As a person on a disability pension, the NDIS (I hope) will mean that I can access private physiotherapists when I need them, rather than having to wait for a public appointment. This also means that I would be off the public list, saving money and giving others better access. It would also mean that I could access treatment options within my local area, rather than having to take taxis or trains to appointments half-way across the city! That, economically, is the icing on the cake for me – I SAVE MONEY, AND GET THE TREATMENT I NEED AT THE TIME THAT I NEED IT, NOT WHEN SOMEONE ELSE DECIDES I NEED IT!!!

  • I have a child with autism and would definitely be open to having a say. Please put me on the email list . Thank you

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