MP, mum and carer Sharon Knight: why the NDIS is critical

Sharon Knight is the Member for Ballarat West in the Victorian Parliament. She is also the mother and carer of a son with a disability. Below is an opinion piece from Sharon that ran in The Courier (Ballarat) on 26 May 2012 and her plea for the NDIS.  

NDIS needs a united front

There are a couple of things that keep me awake at night, but I think the most persistent by a long shot is this:

Who is going to look after my son when I am gone?

I think there are a lot of parents and carers of children with disabilities out there who anguish over this question – day in and day out.

When I am asked what the National Disability Insurance Scheme (NDIS) means to me, it is this question that I come back to.  It is the assurance that an NDIS will be there to provide the services that will be required by my son, determined by his needs, long after I am dead and buried.

Not determined by where he lives, how he incurred his disability, or how strongly the people around him advocate on his behalf, or any other combination of events or experiences, but determined by his need.

When I think over what I have missed the most in being the mother of a child and now adult with a disability, it has to be the loss of being his mum.

I feel I have spent most of his life being his carer and his advocate – his case manager and his worker.

I really crave being his mother, and I grieve that loss.

I also worry endlessly about his siblings and the level of responsibility that they will have in terms of their brother.

As a mum, how do you decide when, how and who will be responsible for their brother?  How do you tell them to factor case management into their lives?  At what age do you start teaching them the departmental structure they may need to navigate if something goes wrong with their brother’s level of service?  How do you begin a conversation describing level of care when you know that what you are asking is indescribable?  I also wonder how to tell them that this not only affects them, but potentially their partners and children.

How do you get to the end of that conversation without breaking down?

I will never forget the overwhelming sense of relief that was felt by me, and other carers, when our Prime Minister, announced that the NDIS would be funded.  It was such an amazing experience being at Federation Square with thousands of other people, all united by the same cause – to give those with disabilities dignity, justice, adequate services and a fair go.

But we need absolute assurance.

We have it from a federal Labor government, but we need it from States, territories and the federal opposition.

This massive and ground breaking shift in how we care for our most vulnerable members of the community will only work if everyone signs up.

The funding provided by the Federal Government is a sign of good faith in expectation that all states and territories will be partners in reform, and all states and territories should take that very, very seriously.

The mixed messages of the federal opposition, which provide no definitive answer on a financial commitment or not to this scheme, are cruel and unfair.

This is a once in a generation change and it is an important one.  The productivity commission knows it, people with disabilities know it, disability support workers know it, parents know it, carers know it, and siblings know it.

We have all waited long enough, and now it’s time.  But it requires all governments, at every level and of all persuasions to be absolutely committed to valuing and reforming the lives of people with disabilities, and those who love and care for them.

Below: Sharon Knight (right) helping out the campaign during Spread the Word week last year.