Models of Care
Carers – Patronised, Institutionalised, or In Control?
Vern Hughes
National Federation of Families, Parents and Carers
Politicians and the media have at last begun to notice the 2.7 million carers in Australia, but there is no consensus amongst carers and our advocates about where we want to be in the future.
There are 3 possible directions in front of us:
1. Patronised
2. Institutionalised
3. Take Charge – In Control
1. Patronised.
This is the status quo in carer affairs. Governments now pay lip-service to the selfless devotion of carers, and patronise our willingness to forfeit careers and financial security. They send cash bonuses in the mail before election times as electoral bribery. They accept the arguments of funded service providers that allocating more money to agencies for counselling, community education and support and respite programs will mean an improvement in the daily lives of carers. In turn, the service providers and funded carer advocates happily accept the increased spending on programs and they are growing their organisations at a significant rate.
In reality, this approach changes very little in the daily life of carers. Families and the people they care for remain dependent on programs and see little of the money allocated to providers. They remain dependent on the patronage of both government and funded agencies.
2. Institutionalised.
This is a vocal strand in carer advocacy which wants governments to directly take on more of the carer function for people with complex disabilities, mental and chronic illnesses, and aged frailty. It likes to quote the billion dollar savings that carers make for governments through their unpaid caring. Their assumption is that paid carers should replace unpaid familial care in many contexts. They favour institutional rather than familial homes for many recipients of care, along with out-of-home respite and recognition that caring is a ‘job’ rather than an expression of familial ties.
This approach tends to liken the caring role to ‘slavery’. Its advocates would remove many recipients of care from the family home to ‘free’ carers from this life. In reality, it would make recipients of care almost completely dependent on governments.
3. Take Charge – In Control.
This approach accepts that most carers want to care for our loved ones at home in the company of friends and family. It aims to enable families to acquire as much personalised support as possible so we can take charge of our situation to the maximum degree possible. It regards much of the current carer advocacy as missing the point – carers do not want to be patronised with more and more programs, counsellors, and case managers. What we want is to live as normal a life as possible, both for our loved ones and ourselves.
At its inaugural national conference in March 2008, the National Federation of Parents, Families and Carers decided to develop a campaign to give every person in community care and their family the option of having their own Individual Budget to take charge of their own support. The initiative is inspired by and based on the successful In Control campaign in the UK.
In Control UK is a partnership between families, individuals, services, agencies, local authorities, and government. The Federation is developing a similar partnership in Australia, on a national scale.
The aim of the partnership is to change the system of personal support and community care in Australia to enable every person in the fields of disability, aged care, chronic and mental illness to exercise Self and Family-Directed Support through an Individual Budget. This means encouraging organisations and businesses operating in these fields to make available these options to every person who wants them.
Because governments in Australia have been slow to introduce self and family-directed support options and individual budgets, a co-oordinated national initiative is necessary to push them along. By ‘individual budget’ we mean a single budget, linked with each person, in which several funding streams are combined (HACC money, transport assistance funding, specialist disability or medical or education funding, supported accommodation funding, etc) so that effective, personalised uses of this consolidated bucket of money can be made.
Options in Individual Budgets
Individuals and families would have the choice to select from one of the following four models of management of their individual budget:
1. Self-management. The individual or their nominated carer holds the money in a bank account, pays people and records expenditures.
2. Agent. The money goes to an individual's agent, which may be a family member, an independent broker, or an accountant or other professional.
3. Trust. The money goes to a Trust set up on behalf of the individual and managed in accordance with its terms.
4. Individual Service Fund. The money goes to a service provider who holds the money in a special account set up in the organisations accounts. The money may only be spent on the support of that individual.
Expressions of interest are invited from organisations and businesses wishing to partner with the Federation in developing our In Control venture.
CLICK HERE to submit an expression of interest. CLICK HERE to read our statement of purpose governing the project.
Vern Hughes
National Federation of Families, Parents and Carers
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The Carers Virtual 2020 is now closed for comment. Carers Australia would like to thank everyone who has taken part in this event. A report will be presented to the Prime Minister on 20 October and a copy will be posted on this website.
Moderator, Carers Virtual 2020
A few people have asked for more details about the recent spend-fest of DADHC, while most of us cannot access respite this is how they chose to spend the money from "stronger together" - on their own staff!! The $466,000 was for a five day Case Management Induction from 16-20 June at Novotel in Homebush. 350 staff attended, 269 were accommodated at the venue - including those who lived within easy commuting distance. Cost was $466,000 all meals and accommodation provided by DADHC. Shame on them!
Just what we need - more Caseworkers - that's right they're recruiting more of them - more money wasted on yet more useless Caseworkers who cannot/will not do their jobs. We need more Caseworkers like a hole in the head.
For those of you who have had the pleasure of accessing DADHC Caseworkers, do you think they are worth spending half a million on?? I certainly don't - unless it's for redundancy pay.
http://www.parliament.nsw.gov.au/prod/parlment/hanstrans.nsf/V3ByKey/LA20080829
This is a link to the NSW Parliament Hansard, August 29.
Scroll right down to the end and see what we are up against.
Kristina Keneally uses threats of cutting disability services saying unless NSW electricity is sold off there won't be money for disabled. She is targeting safe Lib areas.
Was 'Stronger Together' only on the proviso electricity was sold off?
If she's targeting safe Liberal areas then she'll have her work cut out for her - as this election approaches I think we can safely say that most areas will be safe Liberal areas.
That this Minister can even think to use disabled people in this way - as a bargaining tool to ensure support for the electricity sell off. What a low, cowardly act.
Can you imagine if the NSW Health Minister had gotten up in Parliament and said "now we can't guarantee hospitals will get their funding" or the Education Minister "we can't guarantee schools will get their funding." The media would have been all over them, people would have been outraged. People would have been calling for her them to resign or be sacked. They wouldn't say this. Why? Because they wouldn't get away with it. The Disability Minister knows she'll get away with such a shameful comment that's why she said it.
If Ms Keneally now says that the money will not be forthcoming, then that puts in jeopardy the agreement made with the Federal government less than three months ago where the Federal government promised to match state funds for disability services at the Ministers conference in Sydney. Therefore, less money from NSW for disability and aged-care will be matched by less money from the Federal government.
This agreement between the states and feds called 3 hours of respite a fortnight a 'place'.
It seems that the English language is heading for a revamp and every service, no matter how minor or trivial that is allocated to the sector is now being referred to as a 'place'.
Changing the language will not change the crisis in care, but there seems to be high hopes that it will change the public perception of government reacting and putting in timely appropriate resources.
Our job is to make sure that this does not happen, that any credit any government is given is because they have responded appropriately to the need and allocated funding in a humane and compassionate manner.
You are so right, Faye. We could not imagine a situation in which health or education would be jeopardized because of some privatization sale not going through. Yet this is how it is for disability. Because we and our people have no rights, no entitlements, any services come at the whim of the government of the day. We are the last to matter and the first to be cut. The irony is that we will lose services promised under Stronger Together because of a power struggle over, of all things, power, the very commodity we have none of. Power hits the powerless!
Once the NSW Govt has sold off all the utilities, where will people with disabilities be? How do they intend funding disability? Using Keneally's logic, at some point in time in the close forseeable future, there will be no funding for disability. And there would be no Disability portfolio. Whether we had one or not would make no difference.
At present large fairly centralised organisations such as Carers Australia provide good services by dedicated staff but it is largely impractical for Carers out in the suburbs. By 2020 I hope we have a decentralised network of "suburban shopfronts" staffed by a Welfare Officer. Services in these decentralised drop in centres to include, support groups, counselling, time out space in quiet room, meeting places, information, help with form filling, appointment place for dealing with Centrelink and other Govt Agencies and transport etc. These decentralised shopfronts would be easily accessible and provide safe havens for harassed and anxious Carers. These drop in centres could be staffed and run by organisations such as Carers Australia as an extension of their existing services.
No wonder we can't get services in NSW for those with disabilities and so many families are in crisis. 16-20 June DADHC held a conference at Homebush, staff were accommodated at he Novotel Hotel, all meals were provided at a whopping cost of $466,000, that's right while most of us struggle to cope without respite DADHC instead pay for their own staff to have respite in luxury at a cost of almost half a million dollars! How's that for appropriate spending of the "Stronger Together" funding! Shame on you DADHC.
One of our NSW members reported a few weeks ago that his state govt were too broke to subsidize his son's first wheelchair, recently made non-ambulatory with progressive muscle disorder, Duchenne. Yet a celebrity died the same week of a high profile disease and this same state government donates 6 figures to it as an arbitrary reflex. I put it down to the 80/20 principle again - 20% of disorders getting 80% of the funding. I suppose it is the same principle of imbalance operating here, where the most producive 20% of stakeholders, we carers at the cliff face, are 80% overlooked.
I think that there will need to be a better market for home carers in the medium term and the question is whether this will be one provided by big corporations with glossy brochures and underpaid outworkers or by a little army of people who help their neighbours in a number of different ways, being paid in some cases. I acknowledge that most of the caring is done by friends or relatives now. The question is how we can go beyond this.
I wrote this paper for the 2020 Summit and sent it off and never heard another word. So I gave it to Liz Broderick, the new Disability Commissioner, who has tried to suggest it also; I am not sure with how much success.
I have kept it as short as possible, so sorry if it too long. I will also post it on the market access part of this discussion forum.
The 'Neighbourhood Help Framework' : A Market Solution to the Challenge of Caring
As the population ages, and people with disabilities survive longer, there is an increased need for care and carers in the Community. The old way of doing this was to create institutions, such as nursing homes. But increasingly people want to live in the community. They want to retain their own environment, their network of friends and neighbours and their independence for as long as they can. Many tasks they need help with are simple- shopping, gardening, housecleaning, or visiting friends. Others are more personal, like bathing, and others need special skills like dressing ulcers or foot care. Some require resources for lifting, home design changes, or outings. What is needed is a policy of facilitating a 'Neighbourhood Help Framework' based on 'person to person' help that can provide support for both those who are cared for and those who act as carers and helpers. There are a number of elements to this suggestion:1. A norm is created where people help their neighbours who have a disability. This may involve a fee. 2. 'Help tasks' are defined so that people will have a clear knowledge of what they asking for, and what they are offering to do, so that the market will set the fee.3. An Accreditation System is created so that people can register that they have skills for certain 'Help tasks', and are willing to be on a register kept to discourage any unethical behaviour.4. A Training system, such as TAFE with graded certification for 'Registered Carers', so that carers can add to their skills and also can recognise what else might be needed.5. An insurance system for injury to patrons and carers for injury, liability and theft. This could go with the registration.6. Some standard contracts with the 'help tasks' would define options as to what a carer could do. What, how often, for how long and when, could then be by a 'tick-box' system so that these agreements are easy to understand.7. Once a 'neighbourhood help framework' is created, people can hire help for themselves, or their relatives or friends. There may be advertising in the local paper, help being found by word of mouth, or there may be a booking system that keeps track of what is happening on an Internet system. Councils or agencies may be involved as facilitators or providers. 8. The concepts need to be publicised. This article ii not a final solution, but merely a direction in which we might start. Ideally governments would kick off the concept, but leave it to evolve with as little interference and red tape as possible, just enough to ensure that reasonable standards are maintained, and vulnerable people are not ripped off. There is a large amount of work available, but also a very flexible workforce, particularly women 'doing some caring' while their children are at school, or people easing into graded retirement. 'Neighbourly help' could be a common and well-respected part-time job, composed of one or more contracts. Shopping, gardening, cleaning, outings, personal care all could be done in a neighbourly way, and this would be a far cheaper alternative than the present argument over the 'number of beds', or criticism of central agencies when people die at home and are not found for months. The failure to do this is likely to be quite serious. There will be ever-greater loads on government agencies or charities, with the likely rise of 'for profit' care services, with expensive contracts, and the danger of exploited outworkers. A realistic market solution is needed. Let's just make sure it is a small, neighbourly, homegrown one.
Dear Arthur
I cannot agree with your idealism. Neighbourhoods are not designed this way, neither is human nature. When a person (sadly) gets to nursing home circumstances there is not only the person to care for, but the home..outside and in...that is a lot of work for ad hoc care arrangements.
If relatives (willing) do not live nearby, they cannot even care for the property when their loved one goes to nursing care. People in nursing care have trouble getting in and out of bed, let alone cook and shop for themselves...otherwise they are dementing and nearing a category of those born or acquiring ID where they require total supervision...not able to be procured from neighbourhoods.
Not all people have wonderful inter-relative relations and will not bring the elderly into their home because of that, or because they have young adults still residing there, and both have jobs, or for a variety of reasons...they may not physically be up to the demands required whilst working etc.
Idealism is great but reality falls short of this.
I've had disabled (intellectually) person from a baby, now mid 30's....no friends, or relatives other than Mum (me) step forward to do the tasks to educate, care, and socialise the ID person. Dad if he has not fled, due to inability to cope, straying tendencies due to the grass being greener with the dreaded ID person to confront your entire life, etc. works.
There is, as Nell said somewhere in this forum, an imbalance then, in wife/husband lives/relations with one assuming all the emotional etc duties, and the husband working around the clock to provide financially...and often to escape the reality of care and life with a person with ID. This type of living is called existence, definately not a lifestyle.
Neighbours may be pleasant, but they don't step in and do the `run around' to educate, GP's, socialise, wash, iron, mend, purchase, both clothing and food, prepare, etc. nor help with housework, or gardens of the ID person's family to help in the long term....you'd be laughed at if you suggested to neighbours you required help/support. Some neighbours are unhelpful or worse, avoid the family with the ID person or baby, child....Neighbourhoods are not utopia.
People in our cirumstances require a lot of courage, the ability for hermetic life (and enjoy it!), resilience and stamina which we all do not have as we age ourselves....and to take up the slack for bureaucracies which feed their own but do not apply the dollars to the people they are supposed to care for. Naturally in these bureaucracies you get some good people but you get some horrid ones also. You also get the low down, base DADHC draft policies for supported accommodation and respite and a tone which says we need to care for life and that's our lot. Disgraceful. Shameful. Obscene.
Those of us who do care, force ourselves, we are tired and we - I certainly do - require a long holiday to recharge and try to change my drudge identity. To do so we require a reasonable block of respite from a respite facility who will take total responsiblity for our adult with ID and keep ID person in the loop of some of person's usual activities....i.e. person's sheltered workplace. otherwise person will sit around the entire time watching TV or playing play stations and get terribly unhappy and possibly resentful. Despite having ID person is a human being and has needs.
No `friends' (we have no time to socialise as normal 60 yr old people do, or when we were in our 40's and 50's etc) to take up the slack for us anytime, or sometimes, let alone `step in and care' while we take a holiday. Person requires supervision in all things....person is not disruptive, but person is `not the full quid' in old time jargon.
As I said before those in their 60's are off having their own holidays and supporting their own families of normal offspring ...they don't want to, nor will they look after their friends or their neighbours needs, apart from neighbourhood watch, feeding the cat - if you are blest to have a neighbour do that, be thankful...and keep an eye on the property...beyond that nothing.
When I respond to a forum like this then all the memories of isolation, hardship, sadness come tumbling back.
SHAME DADHC AND GOVERNMENTS FOR PUTTING US THROUGH THIS. I don't need or want to have to advocate for my person with ID and to try to get some support services....No fun at all.
What has happened to all the valuable properties for the ID and the mentally ill etc. which the governments resumed? Use the money from the sale of those to fund, and if the properties are still owned convert or sell to purpose build facilities along the lines RASAID suggest...more economical.
Dr Richmond and his report means the old model was dismantled, but the new model has not been implemented. Mentally ill people roam the streets, the hospitals are at crisis point...some mentally ill people are a threat to others, but most are a threat only to themselves...and I daresay others are being sheltered around the clock by devoted parent carers ....give them a break...provide safe and secure facilities and staff them. Many charities want to grow for their own sakes, creating mini beaucracies which feed their own...do not permit this....if a person is required to pay a bond, make it refundable on the death of the person back into the estate from where it came. DADHC/Governments should not provide a climate for a `windfall' for charities.
The government and DADHC do NOt want a central register for those ID requiring supported accommodation, because they do not want to admit to the numbers needing it, they do NOT WANT TO COMMIT to building and setting up the facilities for their care, and they have shown their hand clearly, in that they want to (in fact tone is demanding) incarcerate family...i.e. parent carers (unpaid) to care for their ID adult until either dies. The government/DADHC do not want to provide these parent/carers even with the ability to have a long holiday every now and again. Provide respite facilities that give `block' respite if respite is not used up in `dribs and drabs'.
For Shame, By the way where are all the neighbourhood and friendly support writing to papers and politicians and contributing to this forum on our behalf...unpaid, exhausted, burnt out loving parent carers of adults with ID...those who are dependent lifelong? Invisible they are, conspicuous by their absence as they always are in the lives we lead.
In an ideal world Arthur maybe...but lets get real...the younger people and the middle age are working families as Mr Rudd says trying to make ends meet...they won't be doing the neighbourhood jobs they'll be commuting and working.
I don't know what planet Arthur has been living on, but it certainly isn't mine. My PWD is in his thirties and in all those years I have had one neighbour offer to help me, and I'll bet I'm the exception - most would have none. If people wish to help in the manner suggested, they go get a job with Home Care and do basically what is stated here - they help with household chores or personal care. This does not provide the care that my PWD needs nor that of most of his peers. My son has a mental age of three or four years. He cannot live alone with a bit of neighbourhood support. He can not manage any area of his life without significant intervention. People like my son need around-the-clock care in a supportive environment and they are at high risk without it. But more importantly, they have a community of their own with whom they wish to interact. Leaving them alone with some drop-in support isolates them. We are not talking here about someone with a physical disability or a mild intellectual disability - we are talking high-level hands-on stuff. What we have to keep remembering is that
a) we can provide this level of care for the aged - why not the disabled?
b) we used to take responsibility for our disabled citizens - OK, the standard of care wasn't great but as a community we accepted that we needed to look after them.
c) other countries with a standard of living similar to ours cater for their disabled people and they do it well - why can't we?
I do agree with Arthur that any solution to our problem has to be small, neighbourly - ie local - and home grown. That is why a small cluster development in every neighbourhood where PWD can live with their friends is the ideal model. Fortunately, our department has finally recognised this fact - we now await them putting their money where their mouth is.
I wholeheartedly agree with Tristesse and Sarah. Sorry Arthur, If neighbours were willing to help they already would be helping. If you have to have a "scheme" to encourage elpers I wonder how this would be policed/managed. Even using home help from an agency is intrusive and unreliable in my experience.
My 25 yr old son with ID has a mental age of a toddler and is unable to communicate. He chokes and has no sense of danger or self preservation. I cannot trust him to be cared for by just anybody. All these years of staying home, or at best going out for a couple of hours, but being back in time to feed him are taking their toll. This is far more long-term and all-encompassing than having a neighbour pop in to make a cup of tea. We (all people with ID over the age of, say, 21/25) need supported accommodation urgently. Bandaids will not fix this problem.
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