Speech by The Hon Jenny Macklin MP

Every Child Matters – a national conference on children and young people with disability and their families

Location: Melbourne

Check Against Delivery

I would like to acknowledge the Woiworung people, the traditional owners of the land on which we are gathered today.

First let me congratulate you on organising Australia’s first national conference on children and young people with disability and their families.

This week is also National Families Week – a time to recognise and celebrate the strength, resilience and capacity of families – when families are in the limelight. Fair enough too when it’s our families in all their various shapes and sizes who make Australia the place it is.

I actually think most of us here believe the spotlight should be on families all the time. Especially those families who are raising and caring for children with profound disability or medical condition. These parents, these families have emotional, physical and financial demands that the rest of us can barely imagine – constant, relentless and at times overwhelming. As well as the emotional strain, the evidence shows that carers often experience significant financial hardship, reduced education and employment prospects, lower levels of health and wellbeing, chronic grief or anger and endure social isolation.

On top of this, we know that many carers of children with profound disability or medical condition miss out on financial support because they do not meet the eligibility criteria for Carer Payment (child).

The plight of these carers was revealed in the 4000 submissions to the Carer Payment (child) Review Taskforce which looked at eligibility requirements for the payment and its effectiveness in providing a safety net.

The Taskforce found the existing eligibility criteria were inequitable and restrictive – so stringent that only 3500 families across Australia were receiving the payment.

Just one example: a two year old child diagnosed with severe multiple disability likely to be lifelong, unable to sit or walk without support, unable to feed himself and suffering hearing loss was found ineligible for the payment because he only met one of the three of the required criteria.

No wonder the Taskforce said a new assessment process was urgently required, one that took into account the level of care required by the child rather than a narrow set of medical and behavioural criteria.

The Government is now responding to the recommendations made by the Taskforce with a range of reforms announced in the Budget this week as part of a $822 million package for carers.

Central to this is reforming the eligibility criteria for Carer Payment (child). We will introduce a system that is fair and equitable.

A system that doesn’t exclude children like the little boy described in the Taskforce Report – a child who is blind, deaf , unable to walk or use his hands but whose parents were assessed ineligible for Carer Payment (child) because he didn’t meet three of the seven ticks on the medical report.

His story is clear evidence that the process needs to be fixed.

That’s why the Government will introduce changes to the eligibility criteria for Carer Payment (child) to take effect from 1 July 2009.

At the heart of these changes will be a new, fairer and less restrictive assessment process based on the level of care required by the care receiver and provided by the carer rather than a strict medical definition of profoundly disabled.

So instead of having to meet complex medical criteria, access to Carer Payment (child) will depend on how much care is needed by the child.

We’re also streamlining the assessment procedure.

Instead of three sets of forms and three sets of medical examinations a child will only have to be examined once to make the carer eligible for both the Carer Payment and Carer Allowance.

Our new fair and sensible assessment requirements will mean an additional 15,600 additional carers of children with disability will be able to access Carer Payment (child) in the first year.

As well, carers who provide short-term or episodic care for a child aged under 16 (for a minimum period of three months and a maximum of six months) will also be entitled to receive Carer Payment (child).

A further 3,400 carers are expected to benefit bringing the total of carers now eligible for support to 19,000.

And in recognition of the obvious fact that children still require care as they grow older, carers who receive long-term Carer Payment (child) will be able to move more easily to Carer Payment (adult) and Carer Allowance (adult) once their child turns 16.

We are determined to remove the delays and excessive red tape currently involved in the transition from one payment to the other.

All of us here today, none better than parent/carers, know that the job doesn’t stop for carers if their child is in hospital – a point made emphatically by one carer to the Taskforce.

“It’s full-on in the hospital day and night,” she said. “Bathing, brushing teeth, administering medication, liaising with medical staff, taking my son for scans or treatment, supporting him, changing linen, helping him use the urine bottle, catching the vomit.

As I said parents don’t stop being a carer when their children go to hospital. That’s why we are replacing the restrictive 63 day, hospital stay rule with a new review arrangement every 12 weeks. Under this new arrangement, carers will receive Carer Payment (child) while they provide daily care and attention to their child in hospital.

And the current requirement for a doctor to certify that a child has a terminal condition and will not live for longer than 12 months has been replaced by an estimation of average life expectancy for a child with the same or similar medical condition, with a limit of 24 months.

We are also establishing teams of health professionals to provide external review of complex applications for Carer Payment (child) which have already been processed by Centrelink.

The Government recognises that every caring situation is different.

Some carers look after people with an ongoing medical condition or disability; others care for ageing parents and relatives.

And others tragically become carers overnight through the sudden onset of illness or tragic accidents. When this happens to a child, life is turned upside down for families emotionally and often financially. To help these families the Australian Government is providing $20 million over four years to support the parents of young children who have suffered a catastrophic event.

This will be provided through a one-off Carer Adjustment Payment of up to $10,000 for families (with young children) in exceptional circumstances who do not qualify for Carer Payment (child).

The extension of the Carer Payment Adjustment Scheme will enable the Government to fully consider the most appropriate option to provide support to carers.

The Government is also delivering $428.1 million in carer bonuses to benefit 433,000 carers before the end of June. Carers receiving Carer Payment will receive a $1,000 bonus and carers receiving Carer Allowance will receive a $600 bonus for each eligible care receiver for whom they provide care.

As well, we are extending the $500 Utilities Allowance to Carer Payment and Disability Support Pension recipients and increasing the Telephone Allowance for those with an internet connection.

And recognising that one of the best ways we can support carers is to give them a break from their constant caring responsibilities, respite services will be a top priority for the extra $900 million the Government is investing into the Commonwealth States and Territory Disability Agreement. State and Territory Governments have been asked to match that funding bringing the total to more than $1.8 billion for additional support for disability services across Australia.

That’s in addition to $100 million in capital funding to provide 35 new supported accommodation units for people with disability whose ageing parents can no longer care for them at home. Of course we know this only a start.

The Government has committed $190 million through the Helping Children with Autism package to provide national education and support programs and early intervention services. This package is being shaped to have a strong focus on early intervention so that families of children with an Autism Spectrum Disorder can access supports and services as early as possible upon diagnosis.

We are building six autism-specific child care centres to provide dedicated early intervention programs for children with autism in a long day care setting. These centres will be staffed by trained teachers and child care workers who are specialists in working with children with autism. This is the number one message from parents who want early intervention for their children.

I want to finish by returning to the many carers of children with severe disability who told their stories to the Review Taskforce.

Their job is 24 hours a day, seven days a week ” exhausting and often lonely.

As one mother explained to the Review Taskforce: “No-one else has to continually change nappies, turn them, feed them for so many years. It’s exhausting, sheer exhaustion.”

And another talking about her daughter: “Even at 14 she is still very dependent. She has no understanding or communication. It’s like caring for a giant sized toddler with no prospect of this changing.

Like all parents, they love their children but the sacrifice and selflessness demanded of them is infinitely greater than that asked of most of us.

And it never lets up.

Their stories are inspiring but heartbreaking. And they are a reminder that, as a Government, there is a lot more for us to do.

So I am pleased that the House of Representatives Standing Committee on Family, Community, Housing and Youth announced yesterday that it will be inquiring into how the Government can provide better support for carers.

Over the course of this year, the Committee is going to look at the many challenges facing carers and provide us with some recommendations on the practical measures required to better support carers.

In particular, the Committee will be looking at strategies to help give carers the same opportunities available to others in the community – widening and increasing their options. They will be looking at barriers to social participation for carers and how we can help carers find jobs and stay in the workforce while balancing their caring responsibilities.

As well, the Committee is going to look at how the role and contribution of carers in society should be recognised. There are many ideas around about how this can be done – some examples are a national strategy or carer recognition legislation.

I’m looking forward to receiving the advice from the Committee when the Government receives the report early next year. I’m confident it will provide a voice for carers and a blueprint for future policy direction.

Thank you