Who cares about carers? Kevin Rudd?

Reports out of Canberra in the past week make the extra-ordinary announcement that the Rudd Government may axe the carer bonuses in the razor gang list of cuts to curb government spending to combat inflation.

But the very loud and widespread protests from the carers’ sector over the past week have forced Mr Rudd to make a public statement pledging carers and pensioners would not be worse off in the May budget. Mr Rudd told reporters that Families and Community Services Minister Jenny Macklin was investigating how the system could be improved, but he has failed to rule out dumping the one-off bonus payments.

The carer bonus was paid ex gratia by the previous federal government over the past four years, to families caring for people with disabilities, chronic illness or age frailty, in recognition of the unpaid care provided by those families eligible for the carer payment and/or carer allowance.

The bonus payment of $1,000 paid by the Howard government to family carers in receipt of the Carer Payment and $600 to family members in receipt of the Carer Allowance were not included in the forward estimates, giving the Rudd razor gang the ammunition needed to axe them in their spending cuts.

It is an outrage that the Rudd Government would even consider such a budget cut for family caregivers. Cutting these few dollars from family carers is despicable under these or any other circumstances given Labor’s vocal and very constant family-friendly rhetoric.

It is outrageous that the Rudd Government will still go ahead with the $31 billion in promised tax cuts while there are inflationary pressures causing the government to cut spending. And to suggest they will cut the most worthy and vulnerable citizens in our land - when they work day in and day out for nothing, or nothing much - is nothing short of outrageous.

Mr Rudd prides himself on caring for the most vulnerable in our land, but his rhetoric will be badly tarnished if he allows carers to be penalised in such a manner. The utilities allowance increase being promised by the government to all pension recipients will be welcomed by caring families, but the $390 gain will be a net loss of $1,110 for carer payment recipients, if the bonus payments are scrapped. Carer Allowance recipients will not receive the utilities increase unless they are also a pensioner.

The public have a right to know about the spin being placed on who is a carer and who gets a payment from the government for caring, because not many families actually qualify for a government payment of any kind for caring. While more than 2.6 million families provide accommodation and care to family members with a disability, handicap or frailty, only some 96,500 were in receipt of a Carer Payment in 2005-06 (Year book Australia 2007).

The Carer Payment is income support and is only paid in full to a primary carer (full time equivalent care) where they have no other income. The payment is means tested. Carer Payment recipients are subject to Centrelink’s 25-hour, work/study/volunteering rule, the same as applies to unemployment benefits, even when the carer provides up to 12 hours care a day, 7 days a week, 52 weeks a year plus sleepovers. The Carer Payment recipient is subject to the same breeching rules as applies to people on the dole.

Of the 2.6 million Australian family carers, only 366,000 received the Carer Allowance of a mere $50 per week in 2005-06 (Year book Australia 2007). Both these payments are subject to rigorous qualification criteria by Centrelink, which keeps hundreds of thousands of family carers out in the cold as far as any payment assistance goes.

Parents of profoundly disabled children and/or dependent adult children are not eligible for carer payment when a partner is in the paid workforce. Similarly, a person in receipt of an aged pension or disability support pension is unable to receive a carer payment.

A little understood fact about Carer Payment is that it is an “income support payment”. The well-meaning advocates for a change from Carer Pension to Carer Payment - in recognition that carers actually work for their government benefit - has muddied the water and created a public perception that all carers receive this welfare payment. Nothing could be further from the truth.

More than 100,000 carer allowance recipients are over 65-years-old. These pensioners are struggling under the weight of increased rent or house repayments, food, medical and other daily costs associated with living on subsistence pension payments, like many other low income Australians. However, the extra cost burden faced for accommodation and providing care to loved ones with dependent disabilities comes on top of this struggle.

Picture this: what if your child was born with a profound disability, like my daughter who has Congenital Rubella syndrome from the “German measles” virus. What would you do? What if she was profoundly deaf, legally blind, diabetic, apraxic, incontinent and totally dependent for all her daily needs: what would you do?

What if it cost $100,000 a year for government to provide her with the necessary care outside your home: what would you do? What if the only income support the government gave you for caring for her at home, 24-7-52, was $50 a week: what would you do?

What if you were now an aged pensioner, your daughter was 38-years-old and you had cared for her all her life, then the government of the day said “we are taking away your $600 carer allowance bonus”: what then?

Many thousands of families care for people, like my daughter, who cost more to support than the disability pension income every year because of high support needs. Just as an example: we need new washing machines and dryers far more often because of the quantities of soiled linen and clothes. The wear and tear on linen means it wears out three times more quickly and needs replacing three times more often. Aides and equipment always cost more than the government is willing to pay.

Our rents, rates and living costs increase along with all these extra demands. Let’s get real on the full cost of caring and talk about missed opportunity costs - because carers like myself are bound to constant care demands and use our own pathetic carer/disability/aged pension to cover all the shortfalls.

Collectively, caring families contribute more than $ 36 billion to the national economy every year on saved out-of-home care costs. The cost to our health and wellbeing is too high a price to pay, yet families continue to be exploited to the maximum by callous and uncaring governments which rely upon our deep compassion and love for our kin to ensure we will continue indefinitely.

This is what Mr Rudd promised pre-election: he promised to review legislation to ensure carers had legislated recognition and rights. He promised to fix the broken Commonwealth, State and Territories Disability Agreement. He promised to introduce population based benchmark funding to disability services (something aged care has had for decades).

Mr Rudd is quoted as saying “we will look after carers”, but if he is not now willing to allay the fears of carers over these bonus payments what is it we can expect from this government? He promises to be family friendly and caring but is not even willing to stop the antagonism, mistrust and clearly defined stress evident in his failure to tell caring families what he will do to support them if the bonus payments are to go.

For a new government this “out cry” from caring families is a black blot on an otherwise warm honeymoon for his government. Attacking the weakest, most vulnerable, and highly significant caring family minority is despicable and will have lasting consequences at the ballot box.

If carers are forced to relinquish care to enter the paid work force or to make ends meet, there will be a $36 billion black hole in the economy. None of this makes any sense.

Carers from the wholly voluntary National Carers Coalition took up Federal Treasurer Wayne Swan’s invitation to make a submission to the May Budget for a funded national disability family advocacy network. If Mr Rudd or anyone else had given us this level playing field with the funded services and disability person advocacy sectors, he would have clearly understood from the grass roots of caring, just what harm is being done to the good will of this much maligned sector and undervalued lower class of our society.

The cries of anguish coming from carers are really about how poorly we are resourced to do the irreplaceable job of family caring. The cries of anguish are about the fact that government should at the very least:

• make the Carer Payment available to all full time carers “means test free and tax free;
• make the Carer Payment what its name says it is: “a payment for caring” by removing the barrier for eligibility for recipients of welfare payments such as age/disability pension etc;
• double the Carer Allowance to $100 a week and insure it grows with the CPI; and
• review the eligibility criteria to ensure that all who care for a person with a severe or profound dependent disability are able to be assisted financially to care.

The right to recognition as family carers and the right to support to carry out that role are as fundamental as the rights voluntary Foster Carers and Kinship Carers have to reasonable recompense for caring. It is so wrong that a kinship or foster-carer can receive up to $30,000 per year “means test free” but parent carers and other home-based carers cannot.

We are paid a pittance for doing the same, or similar, work as foster carers or kinship carers. Often our work includes a lifetime of care for a child, up to and including care until our own death or incapacity. Most of these family carers have never even received the carer’s allowance, let alone a carer payment. If natural parents were given the same level of funding support as foster carers many children with disabilities would remain at home who otherwise go into care when the family breaks under the strain.

The purists in our society will tell you that people with disabilities have a right to supported accommodation in their own homes and you get no argument from this carer on that score.

My question is though; why are carers still providing more than 92 per cent of all the cared accommodation in this nation? Why are more than 706,000 people with a severe or profound disability still languishing on lists of data as potential populations for supported living services? Why are parent carers still caring until they get carted off to a nursing home or die?

Why are we still waiting for disability advocates and others to stand up and say that the exploitation of unpaid family carers is wrong and must be stopped?

I fervently hope that the community will be as outraged as we are at the threat to our miserly carer’s bonuses and raise their voices in protest over such an unfair, uneconomic and precipitous suggestion to penalise family carers. There is no “social vision” in such a callous proposal.