All Governments are very big on ‘Mutual Obligation’ these days. Whilst to many this seems a clear cut issue, Government and community awareness must be raised on the issue of long term, and knowledge able neglect and abrogation of any Mutual Obligation or human rights to the hundreds on thousands of family carers in Australia.
This issue seems a complicated one to those who have never been involved in long term, full time care for an ill or otherwise disabled relative. To those of us on the “inside”, and that’s how it feels at times; it is a simple issue. The issue is that there are growing levels of Government Bureaucracy coming between us and the funding we are supposed to be receiving, so as to provide urgently needed respite, to help manage financially and to just begin to right the great injustice that is being done to all long term carers, by the system. That system consists of firstly Government bureaucrats, who are grossly ignorant, not because they have not been informed, but because of sloppiness, self interest, and the desire not to rock a very comfortable boat. Then we have a three tier system of Government sponsered Carers Associations, National and State, Resource Centers, Respite Information Centers, and on. None of these achieve anything at all for the home based carer, and manage to eat up millions of our dollars, ensuring that although there is plenty of information out there, it never translates into anything useful. Also none of the above are accountable.
I urge you to keep reading, as it is vitally important that you come to as complete an understanding of the rightful anger and feeling of total betrayl, we Carers all share. A growing number of us are aware of what the problem is, whilst most have no idea of the depth of the rorting that is going on, and are just hoping that someone, someday, will help them. Most of us do not really have the time and mental energy to keep on tackling this issue. It is about time someone in Government, or hoping to be in Government, helped us hold up our banner of grievances, because to date, although all Partys have been contacted by many of us individually, they have all turned their faces away.
The Australian Federal and State Governments are denying carers basic human rights. Though they are generally considered “Welfare”, they would be the only people to be on active call twenty-four hours a day, seven days a week, year in and year out, over periods of decades. Carers are ‘a hospital of one’, but there is no superannuation, no sick leave, no weekend and certainly no holidays. There is no workers compensation for back injuries, or other health issues caused by long term caring for the loved one or loved ones in some cases. There is no Union. Many of us along with our role as Carer, are also Mothers of small children, wives, fathers, and have other responsibilities, which can be neglected through necessity, due to the role as principal carer.
The Federal Government provides funds for a bevy of ‘information services’ to advise carers about Respite, which does not exist, and services that are only there on paper. We have three levels of ‘information providers’; not one of which ever achieves anything practical for the Carer in the home – at the coalface.
Who are the Carers?
Carers are often disliked, distrusted, and dismissed by doctors, nurses, and others who come into contact with the loved one they are caring for. Generally this is because we are the ones who insist on adequate medical, humane and dignified treatment for our loved one. We ensure that society can keep its hands clean of the realities of disability, because we are generally eager and competent in our care for our loved one.
There are short term Carers, such as those who nurse and provide care for a few months, or a year. There are middle term Carers who may have a relative or close friend needing four or five years care. Then there are long term Carers who will care for ten, twenty, thirty years, and some for the rest of their life. There are also people who have full care for more than one person. Carers are the only people who work for any pension they may receive, be it a full pension or Domiciliarry Nursing Care Benefit (under $80 a fortnight). They work hours that leave most physically, mentally and emotionally exhausted. There is for most, no respite, no home care, no regular time off, unless they are able to pay for it themselves, which most cannot afford.
If and when they finally collapse, they can be treated dreadfully by others, especially official bodies, and made to feel as if it was all somehow their own fault, when in fact the reverse is true. Most Carers will endure levels of illness and discomfort and still manage to provide all the personal care needs of their loved one, keep the house going, do banking, groceries, and cope with whatever health crises that happen regularly with the one they are looking after.
The mental strain, isolation; desolation at their inability to be an autonomous individual, (a basic human right); back injuries and other illnesses such as flu; pneumonia; heart disease; or cancer, are often caused by the unrelieved stresses and relentless nature of their role. That and the lack of any suitable assistance from Government bodies charged with ensuring that the system looks after its people in real need.
1. What would you do, if you had to provide 24 hour a day, seven days a week, year in and out, care for your Husband, Wife, Child, Brother, Sister or Friend who was a High Need Disabled person?
- If you cannot continue this level of care by yourself, the Government will pay, without question or hesitation, $100,000 per year to take over. (You were only paid $1352 per year – Domiciliary Nursing Care Benefit - for the same work.
- If the Government take over, your loved one will not receive the same level of care and attention you can give. Their chance of recovery is reduced. They can suffer neglect, abuse and even sexual assault.
- The government will provide a few hours a week of Home Services, if you are lucky. They will pay strangers $15 to $20 per hour. They will pay you only 16cents an hour. The Services provided are not always suitable.
- Failure to maintain proper care will result in the death of the one you care for.
- Duties include feeding, (naso gastric), and toilet functions – cleaning, incontinence – attending to all personal needs around the clock.
- There is no Superannuation, Holiday Pay, Sick Leave, Overtime or Workers Compensation.
- The work is onerous, exhausting and relentless, and delivers isolation by its nature.
- The Government will allow you only 42 days off per year (not even one day a week), but you can only take this time if you can find someone who can stand in for you. How you pay them is your problem. Try working out the wages, at $18 per hour, 24 hours a day for a week, and see how easy it is to try and afford even minimal respite. At the minimum it will cost the Carer $2,324, just to pay for this care for the one week. Money still has to be found in that week for groceries for the paid Carer and your loved one, for yourself and for any travel or accommodation you might incur. For most it is financially impossible.
No Union would tolerate these conditions for one day.
- Aquired brain injury can be caused by:-
Electric Shock… Assault… and others.
The only hope is that your family can take you home to care for you. Sedation is commonplace if you are placed in a Nursing Home or Hospice. This will make your recovery highly unlikely.
- The Nursing home will cost the Government some $2000 per week, to care for you. This will cost the Federal Government $ 100,000 per year.
- If you family take you home, apart from any Pensions you may qualify for, the Government may pay the Domiciliary Care benefit to cover the cost of your care. This is 16 cents per hour. That is $26 per week. $1,352 per year.
Appendix 1. – Therese Mackay
How do you get proper Respite? My husband is self employed, working from the home, but also needing a lot of care. He is a C5/C6 Quadriplegic Complete, and has been since 1982. Respite in a hospital or ‘Home’ is inappropriate for someone like him. He works, uses his computer and is able to access so much himself about our home, because of how we have set it all up.