Taking Your Child to Surgery - Some Useful Tips

My 4 year old had to have his tonsils and adenoid out about a month ago.  I accompanied him into the theatre and stayed until he was anaesthetised.  He settled onto the bed easily, accepted the mask on his face without a twitch, closed his eyes and immediately went to sleep.  The nurse was astonished.  She asked “is he always this compliant?”  While he is a good kid, he’s a pretty typical 4 year old.  When I told her we’d practiced for the operation the night before she said “bless you – it makes it so much easier on everyone when they (and you) are calm and well prepared”.  I wondered why they don’t suggest it when you book in for surgery.

Here’s what we did – in case it can help someone else:

·         We only told him about the surgery the day before.  No point letting him build it up in his head.  He’s ok with change and isn’t wedded to routines, so we didn’t want to give him too much thinking time. If he struggled with change we may have told him earlier.

·         The evening before we told him we were going to play “going to hospital”.

·         I am fortunate enough to have a theatre gown, hat, mask and booties.  I work in a hospital (in an administrative role) and somehow ended up with them after a work fancy-dress event.  So I put them all on. You could make do with a scarf, apron etc.  I put on the washing up gloves too! I then called for my patient.

·         My husband carried my son in and laid him on the couch.  He looked nervous and also ready to do something fun.

·         We had my husband’s dust mask from the shed and I, the doctor, explained that it was going over his mouth and nose, and that it had special air in it.  The special air had medicine in it that would help him fall asleep and then we’d do his operation. He’d stay asleep and wouldn’t feel anything. He knew his tonsils were coming out but we never specified cutting or anything remotely threatening/scary.

·         We got the toy doctor kit and I then tried to be as funny as possible – tickling him with my instruments and generally hamming it up.

·         We then had him “wake up” and told him his throat was a bit sore and that we’d give him medicine and ice cream.

·         Of course then his big brother had to have a go at being the patient and my younger son got to be the nurse.  He loved it.

The whole thing was a big game.  The next day was so much easier than it may have been as a result. 

A couple of other things I wish I’d known about tonsillectomy/adenoidectomy in kids before we went ahead:

·         They arch/stiffen their body just before they completely lose consciousness.  It is perfectly normal and happens to almost everyone. I wish I’d known that – it scared me at the time.  The anaesthetist reassured me it was normal, but only when I asked.

·         My son recovered physically quite quickly.  He was eating toasted sandwiches by day 3 post-op.  What wasn’t so smooth, but is apparently very common, was the 10 nights of night terrors all night long.  He’d sleep for 45 minutes to an hour, wake up in the grip of a night terror, and take about 30 minutes to settle down from it.  He’d then sleep for another 45-60 minutes and it would start all over again. During the night terror his body was stiff and unyielding.  He didn’t want to be held or comforted. He couldn’t answer questions or respond to commands.  His night terrors lasted 10 days, but apparently they can go for as long as 2 weeks.  His disturbed sleep was also exacerbated by night time episodes of copious floods of sticky, mucous-y saliva.  He found this extremely upsetting, which of course didn’t help him sleep.

All in all it wasn’t an experience I’d care to repeat, but could have been a lot worse.  The sleep deprivation for those first 10 days was horrible.  We only found out how common the night terrors were and how long they last on day 10 and I wish we’d been expecting it from the start!

This is Michelle's son a month after the operation:

Michelle Austin

ATODA Conference Report

Joanne Baumgartner

I attended this conference on Friday, June 21st as a HCCA consumer representative. Having worked as a volunteer at the Karralika Drug Rehabilitation Centre in the 1980’s, I was interested in hearing about the progress in this area. I was also pleased to have the opportunity to learn about how to discuss the issue of drugs with my family members and within the broader community generally.

Online Drug Safety and Counselling Methods

While the speakers’ presentations centred on their websites and online counselling methods, there was also discussion of how consumers have expressed a desire for more online information and counselling resources, instead of needing to call someone or physically present to a counselling service. The various drug organisations were certainly willing to fulfil those needs for users and found that they had greater success with their clients using these methods. However, there are some concerns with regard to the legal challenges and reporting requirements for professionals providing services online.

Generally, the use of interactive web sites allows up-to-date information to be provided to consumers in only a short period of time. The services are available around the clock, so drug users are able to access information about staying as safe as possible whenever they need to.

Tobacco and Smoking

Professor Ron Boorland from the Cancer Council of Victoria spoke about steps being taken to reduce smoking rates in his state. Electronic cigarettes have been introduced as a means of quitting smoking, with a major barrier being that people using this cessation method are experiencing conflict with other smokers in the workplace, who have to go outside to smoke.

Of all the services presented at the conference, the best drug treatment service seemed to me to be the Uniting Care Re Gen program that utilises both online and face to face support with “non rest” rehabilitation.

Joanne Baumgartner

HCCA Representative

23June 2013

ACSQHC consultation on a resource for nationally coordinated improvement in the care of patients with cognitive impairment in acute care

The Australian Commission on Safety and Quality in Health Care (ACSQHC) is developing a written resource to help guide nationally coordinated improvement in the care of patients with cognitive impairment in acute care. The resource will be based on the National Safety and Quality in Health Service (NSQHS) Standards.

After developing a draft version, the ACSQHC will be holding consultation forums to discuss the resource with both consumers and health professionals in each state and territory from October to December 2013. The Consumer consultation forum for the ACT will be held on Tuesday, October 29^th from 9:30am  to 12:00pm at Rydges Lakeside, 1 London Circuit, Camberra ACT 2601.

Information about the consultation can be found here. The ACSQHC are particularly looking for consumers who have had a lived experience with dementia or delirium, but all consumers are more than welcome to attend. There will also be an online survey available for providing basic feedback on the draft resource from 14^th October until the 6^th of December.

If you are interested in attending the forum, expressions of interest are being collected online at: https://www.surveymonkey.com/s/ciconsultationregistration

The Health Care Consumers’ Association is assisting with promoting the ACT forum and collecting feedback. We will send out a link to the online survey when it becomes available and distribute the draft resource to consumers who wish to participate in the consultation. If you have any further questions about the consultation in general, please contact the Project Team at cognitive.impairment@safetyandquality.gov.au or (02) 9126 3648.

Consumer Experience and Expectations of General Practice in the ACT: A Snapshot 2013 survey

We are very pleased to announce that the Consumer Experience and Expectations of General Practice in the ACT: A Snapshot 2013 survey is now live. Through this survey we expect to obtain a better understanding of what consumers experience, want and expect of general practice in the ACT.

In 2009, HCCA conducted a similar survey and more than 600 people in the ACT completed it. The findings of that survey can be viewed here.

The material we will collect from this survey is valuable and will inform our work with the ACT Medicare Local as well as with ACT Health. 

The survey will take 10 minutes to complete and your responses are anonymous. This survey will close on Friday, 4 October 2013.

We would appreciate it if you could share this survey with your networks. The findings of this survey will be available on our website later this year.

If you have any questions about the survey please do not hesitate to contact us.

Complete the survey the survey here:

https://www.surveymonkey.com/s/3HLC8LC

"If you want to get fit, run 10k. If you want to change your life, run a marathon." - Rob de Castella, Murray Chapman Speaker Series

Former Olympic and Commonwealth Games marathon runner, Rob de Castella, delivered the address at the latest event in the Murray Chapman Speaker Series on 28 August.  De Castella spoke about his work with the Indigenous Marathon Project, and the potential for such programs to help in addressing physical and psychological issues within Aboriginal and Torres Strait Islander communities.

The Indigenous Marathon Project was born out of a conversation between documentary filmmaker Matt Long and de Castella in 2009, where Long suggested that perhaps Indigenous Australians could be competitive in the marathon at an international level.

What followed from this conversation was a journey of discovery and inspiration.  De Castella and his team undertook a "recruitment drive" in Aboriginal and Torres Strait Islander communities, and selected four young men - Juan Darwin, Joseph Davies, Caleb Hart and Charlie Maher - from Arnhem Land, the Kimberley and the Central Desert to train for the New York Marathon.  

Throughout the training process, de Castella was confronted by the myriad of social, cultural and psychological issues that impact on the men and women living in these Aboriginal communities.  The project became about much more than just entering a marathon - it became a mission of self-empowerment, working to dispel the sense of hopelessness and despair that many of the community members experience.  

Working towards that first New York Marathon, de Castella revealed that there were a number of unexpected pitfalls along the way, including the process of obtaining a passport for one of the competitors. Juan Darwin, from Maningrida, didn't have a birth certificate, making the paperwork associated with his application rather difficult.  Darwin eventually received his passport a few days before the team was due to leave for New York.  His friends and family in Maningrida were incredibly proud of him, not, as de Castella noted, because he was going to run the marathon, but because he was the only person in the community to have a passport. Training also proved troublesome in Maningrida, where packs of wild dogs didn't look too favourably on would-be marathon runners improving their stamina.  This issue was resolved with the help of the local police, who were able to drop Darwin further outside of town, allowing him to run back - slowing to a walk when the dogs appeared, of course.

De Castella at an early training camp with
Juan Darwin, Joseph Davies, Caleb Hart and Charlie Maher

Ultimately, despite the setbacks, all four men crossed the finish line at the New York Marathon. Their story was the subject of the 2011 documentary Running to America.

The Indigenous Marathon Program has grown in leaps and bounds since that first "trial run". Nominations for the program are received each year from November to January, for potential participants, men and women, between 18 and 30. De Castella said that usually they receive 130-150 nominations.  The program team whittle down the field, and then visit nominees in their communities.  Successful nominees are then invited to attend a number of training camps, the first of which is held in Canberra. Participants in the program undertake a Certificate IV in Indigenous Health and Leisure, providing them with a vocational qualification after the program has finished. The program has now entered runners in the New York, Boston and Tokyo marathons.

As de Castella noted, the program is about far more than just running, or a trip overseas. Many people living in these remote communities are sick of seeing their friends and family dying from chronic disease, or addictions to drugs and alcohol, and want to do something positive. As de Castella learned through that first training process, chronic illness cannot be addressed unless people are empowered and have a sense of their own worth and access to educational and vocational opportunities, giving them something to get healthy for. 

The core tenet of the Indigenous Marathon Project was summed up very nicely by de Castella:
 

Running is simple. Running is just putting one foot in front of the other. But it changes you.

And it can help you change others.

Heather McGowan

Project Officer

Medicines and Food

A couple of years ago Janne Graham had the opportunity to attend a pre-conference dinner conducted in association with the Gerontology Conference. The guest speaker Yvonne Coleman, Nutrition Consultants Australia addressed the issues related to medicine/food interactions and participated in a panel with Judith Schmerler a practice nurse and Janne Graham on the topic.

This was Janne’s report from this event:

Although some of the information I heard was familiar it is the first time I have actually been confronted by the depth and breadth of the issues. I hope this summary may be helpful to others.

Medicines can affect nutrition at many points. Food intake can be affected directly by either increased or decreased appetite, or indirectly through adverse reactions such as nausea. Nutrition absorption can be affected directly through inhibition of absorption of nutrients because of a drug or indirectly through such things as altered gastro intestinal tract pH, bacterial overgrowth. Some drugs alter the nutrient metabolism such as phenytoin which increases metabolism and therefore the requirements of Vitamins D,K and folate. Nutrient excretion can sometimes be increased or decreased through medicine use. Of course multiple medication use can confuse all this.

Equally food can alter drug effects. We tend to be aware when we must have medicine with (or without) food. Other issues may be changes in diet, malnutrition which may exacerbate some drug effects, or weight change may need to be taken into account for dosage. Lastly there are the known and unknown food/drug and drug/food interactions.

This field is not well addressed, as many consumers will already know. Often the information we seek is not available, the research and testing has not been done and/or our health professionals do not take these complexities into account. Drug/food interaction advice is often inconsistent and falls into several main groups – advice not provided; foodstuffs contra-indicated, and advice yet to be determined.

Some actions which individual consumers may engage in to focus attention on these matters were touched on in the panel discussion:

• Consumers could contact pharmaceutical companies and ask them about know nutrient issues in relation to their products. There is rarely any information on the CMI because the product is rarely tested or effects measured in relation to trial subjects’ diets. Consistently asking will impact on the companies’ statistics and point to issues for further research. TGA does not require such information and post-market surveillance and complaints procedures are not well geared to pick up such sources of adverse events.
• Report possible inter-relationships to the Consumer Adverse Medicine Event (AME) line (1300 134 237) or seek information from the NPS Medicine Information line (1300 888 763).
• Ask prescribers and pharmacists about food in relation to our medicines.

Consumers and carers will need especially to be alerted to the issues as they may affect older people, in their own home or particularly in residential care. The panel recommended that carers become familiar with the accreditation standards for Commonwealth funded residential care facilities and report recognized breach of food standards to authorities (1800 550 552). There was particular concern about small proportions and inappropriate foods being served (advice: take photos) and variability in the way in which medicines are delivered for people with swallowing difficulties (apparently it is more important to be consistent rather than what vehicle is used–yogurt, cooked apple, jam, honey etc).

Research and knowledge in this field appears to be in its infancy. For instance there is no dedicated research journal dedicated to this field There would seem to be a real opportunity for consumers to drive demand for better information in this arena. There are some clear structural barriers not least of which is the conceptual separation of food and medicines with different regulatory authorities, different manufacturing industries, separate professional groups and little coordinated drive for research. The organized consumer movement is similarly arranged at the national level with CHF more focused on medicines and Choice more on food. Both these organisations and the many consumer and community groups, whether members or not, will be holding through their members a wealth of information on the medicine/food interaction experiences Since the chemicals whether labeled medicine, vitamins, natural products, foods or supplements all integrate in our bodies consumer organisations may be ultimately the only ones in a position to raise the level of awareness.

Janne Graham

ACT Launch of the Charter of Health Care Rights - 2009

The following was written by Janne Graham in 2009.

Introduction

The Minister has commented that initiatives like this are a long time coming. It is appropriate then that I use this opportunity to provide some historical context to the current Charter. It is instructive to learn from these earlier consumer experiences to help us respond effectively to this Charter. Because the stories about social change often involve significant individuals as well of appropriateness of time and place I will also indulge in a little name-dropping.

Historical Perspective

Australian Capital Territory

• Shortly after the formation of Health Care Consumers Association of ACT, the first health consumer organisation in Australia, around 1979 -80 members worked on a “Statement of Health Consumer Rights”. They drew on the statement of consumer rights endorsed by President JF Kennedy in 1962. In some ways we have come to find the “right to choose” from that document as problematic since the market has often offered us more and more product under the guise of choice without any appreciable difference or improvement in value. I’ve been inclined to explain in overseas forums that in Australia we believe in choice: take it or leave it!

At the time there was some lobbying from members to add the right to “a smoke free environment” – quite prescient.

The outcomes from this exercise provided the association with a framework for its work and its policy development. The regular triple fold pamphlet was produced and distributed through health centres and to community groups. A set of slides was developed to assist members when speaking to clubs and community organisations where the idea of rights and the term “consumer” were still problematic.

One of the drivers of this work was John McMillan, now Professor McMillan and Commonwealth Ombudsman.

• At various times over the years there has been some energy within ACT Health and its predecessors to respond to the consumer expectation for support in recognition of our rights. I don’t recall them all. In the early ‘90s I do recall some concentrated work by a middle level staff member in the bureaucracy developing and consulting on a range of drafts but they faded away. This was David Roberts, now I understand heading the Commonwealth office of Health and Ageing in Tasmania.

Nationally

• Consumers Health Forum of Australia from its formation in the late ‘80s had members working on a statement of rights. The organisation was funded by the Commonwealth Government to work on government areas of interest such as pharmaceutical reform and medical education. It was not, and never is easy, to get funding to work on consumer driven initiatives. So there was a bit of “robbing Peter to pay Paul” so that the work could proceed.

The outcomes included the ubiquitous pamphlets, now translated into key community languages. These were circulated through the expanding national network of health consumer and community groups. The principles became a resource in training consumer representatives and informing policy.

Two of the leading consumers working on this project were: Christopher Newell, whom I will speak about again later, and Hilda Bastian who later was a leader in the consumer arm of the Cochrane Collaboration and is now a well respected consumer researcher, currently working in Germany.

The original Safety and Quality Council had health consumer rights on its agenda but the work, as is often the case met significant resistance from influential clinicians and for one reason or another got lost in the bureaucracy. It is worth commenting that as the consumer role has been more accepted and the language of rights more acceptable the opposition has been more muted and couched more in demands for a need for statements of consumer responsibilities. This reflects little understanding that the rights claims are an attempt to even up the power imbalance between user and provider in health services: the issue is not, or should not be about consumer responsibility.

What is Different this time?

The Charter which the Minister has launched today is the product of negotiations with all stakeholders and through all states and territories under the auspice of the current Commission on Safety and Quality in Health Care. It is a response to health consumer expectations which had not been well met over the years.

Here I want to take a moment to acknowledge Christopher Newell, by then Rev. Dr, who was the consumer/community Commissioner and who continued to drive the rights agenda with passion and persistence. He died in June last year, a month before the Charter was launched by the Commission nationally. We owe him a great debt for this and much other work that he did to work for human dignity especially in the fields of disability and health. I personally believe that his untimely death was in part related to the failure of services and institutions to give him the respect, dignity and care he demanded for others. We owe him a great deal.

In the ACT we can be proud that the new consumer Commissioner is Russell McGowan a member of Health Care Consumers Association of the ACT and we know he is making his own significant contribution though the Commission among many other places.

It is notable that the Charter has still been consumer driven but this time it has been negotiated with clinicians and with government. We have what is called, in a phrase to make Don Watson cringe, buy-in. There has been a move towards partnership in the process thus modeling the expectations of the product.

It is quite apparent here today that we also have support, champions in management-speak, at the highest level.

The document itself has left behind the “responsibility” language but rather sets out how consumers, clinicians and the services might act to give life to the rights which the Charter endows

Where to from Here?

The task, as both the Minister and the Health Services Commissioner have emphasized, is to develop implementation plans to turn the rhetoric into reality. Consumers agree that we wish to see a move towards a legislative base which gives the Charter real teeth. It is essential too that in the ACT we find ways to move this work into the private sector. We agree with the Minister that an implementation plan should integrate the principles into all ACT Health operations – policy, planning, feedback mechanisms including linking to RISKMAN, and evaluation of services should be measured against them. Consumer representatives stand ready to assist in these processes but also will remain alert to ensure that implementation becomes a reality.

Some specific expectations include:

• Public and ongoing promulgation of the Charter to the public. For instance wherever there is Gideon (bible) there should be a Charter. This cannot be a one off activity. Continuity is essential.
• The high level champion commitment is valued but people come and go. One way of ensuring an ongoing commitment is to have consumers represented on selection committees for significant appointments. There are precedents for this internationally and within the ACT it has been used to good effect on a few occasions through The Canberra Hospital Board.
• Staff training in the implication of the Charter is critical, again on-going. Consumers can make an effective contribution to the planning and conduct of training.
• We would expect that the Charter issues would be caught up in professional contracts so that there can be accountability for contracted performance.
• An effective way of supporting the rights in the day to day experience of users of the services is to provide a genuinely supportive advocacy service. Health Care Consumers Association and other community groups are regularly faced with the stories of consumers which reflect the difficulty for individuals in navigating the systems and services. There are various models available. Now is the time for government to support research into an appropriate model or models for the ACT and to assist in establishing an appropriate service.

Conclusion

Robert Hughes in The Fatal Shore says that “…rights are never given; they always have to be taken”. Perhaps we have found a way to work for consumer rights in partnership. A Charter indicates that the rights have been given from authority to us. It contributes to equalizing our partnership in personal care and, by extrapolation, to policy and planning.

We welcome the Charter.

"Aged Care: The People’s Forum" – at the National Press Club, 13 August 2013

Carol Bennet, CEO of CHF, at the Aged Care Forum.

Panel:

• Ian Yates – CEO, Council on the Ageing (COTA)
• Glenn Reiss – CEO, Alzheimer’s Australia
• Carol Bennett – CEO, Consumers Health Forum of Australia (CHF)

Ian Yates opened the forum by stating that over 40% of voters in the coming election will be over 50 years old. COTA wants to see a new deal for older Australians, which is outlined in their election platform. 

COTA is campaigning for:

• an end to ageism and age discrimination in all aspects of Australian society
• access to quality health services for all older Australians
• the participation of older Australians in the workforce as long as they want or need to
• access to quality aged care services when and where they are needed
• a reasonable standard of living for older Australians 

Yates went on to make the point that unemployment of Australians between the ages of 55 and 65 has the potential to have a detrimental impact on the health and wealth of this demographic. Whilst he welcomes the Government’s “Living longer, living better” initiative, aimed at reforming the aged care sector, Yates believes that it does not go far enough. The package will provide 80,000 new consumer-directed home care packages, in a similar format to the proposed Disability Care Australia packages. “Consumer-directed” means that the consumer controls the package and can leave different services if the care does not meet their needs.  The initiative will enable simpler access to residential aged care facilities (RACFs) and easier to understand financial arrangements to allow for comparisons between facilities. The new health reform package introduced by the Gillard Government will also see the provision of more beds in RACFs.

In summing up, Yates expressed his disappointment in the two federal leaders’ lack of attention to aged care during the recent debate.  He noted that there appeared to be little difference between policies of both parties. Yates emphasised that aged care funding needs to be provided on a needs-assessment basis rather than the current quota system, which is ineffective. He applauded the consumer-directed care elements of the “Living longer, living better” package, noting consumers want to make a contribution, be independent, and exercise personal choice. Yates also believes that the “My Aged Care” online gateway, which is part of the package aimed at simplifying information and access to aged care, needs a local face. He went on to state that the Productivity Commission report that informed the new reforms was comprehensive, but that significant portions of the report’s recommendations had not been included in the final package.  Yates asserted that there was strong support amongst the membership of COTA against the inclusion of the family home in the assessment of assets for an aged care place. Finally, he spoke on the need to have an open conversation about what constitutes a good death and respecting the choice of older Australians through the advanced care planning process. 

Glenn Reiss followed on from Ian Yates, commenting on the many exciting and daunting challenges facing the incoming Government with regard to dementia care. According to Reiss, the exciting part is the potential for driving social policy change, from the current model of a “one size fits all” approach to service provision, to a new model that promotes access to appropriate care and consumer empowerment. There are 320,000 people currently living with dementia in Australia, and by 2050, 900,000 Australians are predicted to be living with dementia. Dementia care costs the health system $5 billion annually and is the biggest risk factor in aged care. Reiss asserts the need for an increase funding for dementia research. To this end, Alzheimer’s Australia has launched its Fight Dementia campaign. While the Government has commenced implementation of an aged care reform package, Reiss believes that there will be a 5-10 year period before the impact of these reforms is fully felt.  

In summing up, Reiss called for:

• Access to care based on individual needs 
• An expansion of community care, particularly for those with higher needs, so that there is a real alternative to care in RACFs
• Dementia-specific respite care
• System advocates to help in guiding consumers through the complex system and ensuring informed choices
• Assured good quality in RACFs – at the moment its variable and not up to the standard that Australians would expect
• Zero tolerance of poor quality care in RACFs – quick remediation and investigation of adverse incidents
• Increased investment in dementia research
• Robust connection and communication between Disability Care Australia (DCA) and the aged care sector to ensure that people do not fall through the cracks at the DCA cut-off point of 65 years 
• Commitment from all political parties to these reforms

Carol Bennett started her address by noting how little about aged care had been mentioned during the election campaign thus far.  Carol warned that politicians will ignore the aged care debate at their peril.  She made the point that health is more than just treating illness – it is about occupational health, safety on roads, nutrition, transport, engagement in community life, family life, and all the other factors that make up a person’s life. Our system should promote health not just treat illness.  Bennett believes that our system is currently too hospital-centric, meaning that interventions are delivered the most expensive in environment, eating up limited health dollars.  A sizable proportion of hospital-based interventions should be dealt with in the primary health care context, within the community in a more appropriate setting and at a much lower cost. 

Bennett further commented that:

• Australia’s out of pocket health expenses are one of the highest amongst OECD countries, with costs for consumers higher than in the US and UK. 
• Poor dental health is an indicator of social disadvantage in our country, and that the burden of our current ineffective system impacts disproportionately on older Australians.
• Medication expenses are an issue for older Australians, due to the inflated costs for medications being passed on to consumers from the Government.
• Consumers don’t want to be passive recipients of services and that consumer-directed control of services and treatment is imperative.
• The current health system seeks to prevent mortality at all costs even against the best interests of patients.  Dying with dignity is not accessible for many older Australians. We need to have a conversation about futile care.
• Dementia care is particularly alarming at the moment with a system that focuses on acute episodes of care, rather than on quality of life.  Treatment is based on waiting for a crisis rather than on prevention or mitigation strategies.
• There is a critical need to move away from the current funding system that encourages episodic care rather than the holistic kind of care desired by consumers. Older Australians need to be at the centre of their care.

After the statements from each panellist, Yates, Reiss and Bennett participated in a Question and Answer session.  Below is a summary of that discussion. 

• All panellists agreed that improved aged care is not just about an increase in funding, but about a reimagining of the way in which care is delivered.  They all believe that community care needs to be emphasised so that the focus is not on institutional care. 
• Consumer stories are powerful for community organisations, as it puts a human face to an issue where figures and statistics cannot.  The Alzheimer’s Australia dementia campaign is based on consumer stories. 
• There is a growing trend toward older Australians wanting to have a voice and to contribute to the effectiveness of the health system.
• Advanced care planning needs to be coordinated nationally, across all states and territories to ensure a consistent approach. 
• There is a general acceptance that the new reforms introduce a “user pays” system where those who can afford to will pay more for their care.
• There is a little known “third class” in aged care which is comprised of older immigrants who have been sponsored by their families to come to Australia but don’t have access to any health services because of their visa determination.
• Economists and consumers agree that the current system is failing lots of people as there are not enough community care packages or RACF places where consumers want to go. There is a general belief that the new reform package will go some way toward improving some of these issues.
• There is a significant net capital and recurrent funding increase to RACFs as a result of the new reforms and there is a monitoring system to ensure this results in better care.
• There is a need to bring disability care, mental health, and aged care systems together to ensure people don’t fall through the gap and that services are delivered efficiently and effectively.

Kerry Snell

Health Infrastructure Program
Consumer Coordinator

Disability Care Expert Panel June 2013 – Discussion Summary

 

The Health Care Consumers' Association recently  convened a forum on the National Disability Insurance Scheme, now known as Disability Care Australia. We were very pleased to have two members of the ACT NDIS Expert Panel and the Director of the Taskforce present and then take questions.

• Sue Salthouse – Community Co-chair on the ACT National Disability Insurance Scheme Expert Panel
• Simon Rosenberg – CEO Northside Community Council and Member of the Expert Panel
• Kate Starick – Director of the ACT NDIS Taskforce

What follows is a summary of our notes from the forum. We have done our best to accurately capture what the speakers covered in their presentation but suggest you go to the ACT Community Services Directorate if you have specific questions.

Sue Salthouse

According to OECD Gender Gap Indicators, Australia is ranked first in terms of its education of women, but only 22^nd in terms of the economic participation of women, and is 25^th overall. Women with disabilities have far worse outcomes in every Gender Gap Indicator.

Disability Care (DC) planning will need to take into account the inequities faced by women with disabilities. There is currently a 17.4% gender gap in earnings for PWD. Women are also more likely to be single, working part time and in a caring role, which places them at a further financial disadvantage. Women who have experienced violence are also less likely to access support.

Women with disabilities have indicated that they would like assistance with transport, including taking children to and from school, rather than just personal care in the assistance packages they receive.

In the ACT, 17% of women have disabilities, whereas only 11% of the male population have disabilities. Despite the higher numbers of women with disabilities, 60% of people accessing disability services are men. It will be important to ensure that the greater proportion of women with disabilities in the ACT is recognised in DC services.

In the first stage of DC roll-out, the focus will be on individuals with relatively high support needs, or of a chronic episodic nature. The employment services not covered by DC will be separately funded by other federal government schemes. 

 The Australian Government has opted to use targets rather than quotas for employment rates for PWD. However, the Committee on the Elimination of Discrimination against Women (CEDAW) has recommended that Australia adopt quotas for women with disabilities. Targets are aspirational in nature and have historically been shown to be ineffective.

‘My Access Checker’ is an online tool that has been developed for PWD to check whether they will be eligible for the DC packages. At the moment, it is only available in states where DC has already been launched and requires a postcode for access.

The Disability Care Australia website will be another useful online tool that is easy to understand and has a number of accessibility options. 

Simon Rosenberg –

The launch of DC in the ACT has been delayed until 2014. In the 12 months leading up to the launch, there will be an enhanced service offer.

Aged care packages are also being reformed at the moment, although this has largely gone under the radar. Both aged care and disability packages will have a similar philosophy of client centred care.

The message has been taken on board that DC packages need to be inclusive of mental health consumers living with long term, severe mental health issues. The term psychiatric disability is being used, but only in Victoria.

The take up of DC packages by people with mental illnesses is likely to be much less than by people with physical disabilities.

There is still a tendency of mental illness and physical disability to be perceived as separate issues. We need to address the stigma associated with mental illness and the perception that people with physical disabilities have more of a right to treatment.

Kate Starick –

DC is focusing on redirecting funding from providers to the clients themselves.

At present, providers have to consider their capacity to meet the needs of each client and may need to refuse more complex patients if they do not have capacity. Under the new system, the preferred assistance and services will be assessed so that funding can be provided to purchase those services.

It is hoped that DC will facilitate cultural change, rather than just a change to the funding model.

Resources will now come with the clients, so they won’t need to just take what they can get. This will also mean that decision making and care coordination responsibilities are transferred to the consumer. Some PWD will need support during the transition to these new models, which may also be able to be purchased in some instances. $16 million has been allocated to assist in making this transition over the next generation.

The implementation of DC will require a significant culture shift to choice, control and resources being placed in the hands of the consumers. For some PWD, this will not be an easy transition and they will need support to manage the range of choices becoming available to them.

Timetable for the ACT:

·         2013 – training to assist with transitioning to the new scheme and looking at lessons learned from implementation in other jurisdictions

·         July 2014 – 2500 PWD with the highest and most complex needs move into the scheme

·         July 2015 – another 2500 PWD in tier 2 move into the scheme

·         2020 – full scheme implementation

The key challenges we face will be to decide what is reasonable to fund under DC and to learn what works and what doesn’t as quickly as possible.

Question and answer session

Q. Will PWD who now don’t qualify for support now because of family income means test be eligible for assistance under the new scheme?

A - Clients will need to be aged under 65 and an ACT resident at the launch date to be eligible, and will just need to meet the requirements of the NDIS legislation for being a disability. Medical and pharmaceutical services would probably not be funded for people on higher incomes but transport to access medical services and household modifications might.

Q. What happens to people who don’t qualify for DC (eg. Are aged over 65 years) but still need to purchase services. Will the services be more expensive?

A - The pricing of supports and services will need to be fixed so that the people under the scheme and those who don’t qualify pay the same for similar services. We need to avoid price gouging.

Q. How will DC be funded?

A - The funding system will evolve over time, with funding currently going to federal programs being redirected to DC. This will be managed by a Board. Once the funding has been allocated to DC, it will then be directed to the individual clients, trusted third persons or a nominated agency to purchase the necessary services.

Q. How will funding be allocated for early intervention programs for children with disabilities?

A DC is a social insurance scheme to reduce the long term financial impacts of having a disability. Early intervention has been recognised under the scheme. In order to receive funding, there needs to be a strong evidence base that the treatment/intervention is effective.

A - A fixed portion of funding will be allocated to early intervention, wheelchair modifications etc. along with a flexible amount that can be spent to meet an identified outcome.

Q. What about clients who cannot negotiate for themselves?

A - It may be necessary to organise a broker in a similar fashion as for the Advanced
Care Directives.

Q. What level of disability is required to be eligible for DC?

A - Enduring disability is the term referred to in the scheme, not temporary. DC packages will be based on a tiered scheme outlined below:

·         Tier 3 – severe, ongoing support needed

·         Tier 2 – moderate, some support needed

·         Tier 1 - everyone else meeting the eligibility criteria

Q. Will wheelchairs and other home modifications be covered?

A - ‘Regular support’ under the DC scheme is not restricted to clients needing regular care. The support could also be used for home modifications, wheelchairs, etc.

Q. How will the assessment process operate?

A - Assessors will be set with local area coordinators. Clients are also able to self-refer online or go in person the agency to see if they are eligible. Clients will not need a referral from their GP.

Q. How will people with recurrent and fluctuating disabilities be treated under the scheme?

A - there will be a review process built in to the process, but we don’t want to make people feel as though they have to ‘spend it or lose it’.

Q. Will Aboriginal and Torres Strait Islander assessments be culturally appropriate? I.e., will funding be allocated for traditional medicines or going back to country to fulfil spiritual needs?

A. There are a number of Aboriginal and Torres Strait Islander people on an advisory group, so it is hoped that these considerations will form part of the scheme. There is recognition of the need to consider the diverse needs of CALD, Aboriginal and Torres Strait Islander PWDs. The package provided to each client should be formulated based on mutually agreed outcomes.

Q. How will the age cut off work?

A - Clients will need to have acquired their disability before the age of 65, otherwise they will need to be covered by age care funding.

Q. Does the scheme recognise the crucial role of carers; will there be funding for carers?

A. We recognise the significant role of carers and the importance of keeping them well, but there is unlikely to be funding for carers. Ideally, if the right supports are put in place for the person with a disability, the carer would be well supported by default.

Q. Will people be able to purchase equipment through the ACTESS scheme?

A. Eligibility criteria sits with the client and not with the individual equipment. Clients will be free to purchase the equipment they believe will best suit their needs. Providers will need to position themselves so they can meet client needs appropriately or risk losing business.

For more information on Disability Care, go to www.disabilitycareaustralia.gov.au

Nicole Moyle
Policy Officer