NOT WORTH THE BOTHER -...

August 2009 | Volume 18 Issue 3

MARY LOU CARTER - THE ADVOCATES’ ADVOCATE

EARLY ONSET DEMENTIA

GOOD PUBLIC HOUSING DESIGN

NOT WORTH THE BOTHERTHE APPALLING MEDICAL TREATMENT OF ELDERLY AND DISABLED

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Features

8 Profile of Mary Lou Carter – advocate, carer & powerhouse

17 Spinal cord injuries – some statistics

18 Virgin Blue breached the DDA and would have got away with it but for Maurice Corcoran

20 The details are crucial to good public housing design writes Geoff Barber

22 Dealing with the tragedy of early onset dementia

25 Incontinence: a reader’s story

26 Theo Schapel: the poet as alchemist

28 How many drugs are too many? Dr Andrew Gunn

30 Fiona Place’s ambivalence about the r-word (retard)

32 Who’s supporting the support workers?

34 Rehabilitation using hydrotherapy

37 Rheumatoid arthritis? More sleep may be the answer

38 Safer alternative to ECT: transcranial stimulation

41 Lorna Hallahan evaluates the Pension Review

Regulars

7 Shopping shouldn’t be so hard says Samantha Jenkinson

10 Ken Baker: three momentous moves in disability policy

45 What’s On

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Cover Story

12 Death, neglect & bias. Sue Corrigan reveals the appalling medical care meted out to aged & disabled people

2 link magazine August 2009 — Vol 18/3

Letters

I found both the article “Is marketing of complementary medicine a joke?” and the illustration [April 2009, Link] biased and denigrating of complementary health professions and natural pharmaceutical products. What is now known as complementary, or natural, medicine was mainstream medicine for millennia until the ‘scientific’ approach was adopted.

Some universities are now offering degrees in naturopathy and natural medicine where naturopaths, western herbal medicine practitioners and many others receive the same level of training as a doctor (minus the surgery and invasive techniques). The Therapeutic Goods Administration (TGA) has very clear guidelines as to how natural products and the services of natural health practitioners may be marketed. Reputable and trained natural health practitioners are made aware of the boundaries through the courses in medico-legal obligations offered by our training organisation and many other vocational and tertiary education organisations.

The actions of the Complaints Resolution Panel (CRP) on handling complaints is not ‘weak regulation’ of the natural health products or industry, as Dr. Harvey claims. What Dr. Harvey does is draw inferences about efficacy of the products (all of which have to have TGA approval before being offered for sale) and the fact that some practitioners

or manufacturers breach the advertising code. While there might allegedly be a larger number of complaints than against Big Pharma products, most of the infringements are minor and rightly purely demand a reprimand. If teeth are needed, then the Act needs more bite in it, as it is legislation that regulates the process.

There needs to be open, transparent and equitable investigation of all complaints about all pharmaceuticals (chemical and natural) and all practitioners (medical and natural). This is not happening at the moment as many people are not aware that there are avenues for complaints about mainstream medical practices or of prescribed medications.

Has Dr. Harvey ever studied the advertising and claims for Big Pharma drugs? Many of these, and the marketing ploys of the drug reps, would be considered breaches if the same codes of conduct applied to them as applies to the complementary health industry. Witness the investigations now over Vioxx and other medicines now shown to be very venomous ‘snake oils’. The very nature of the beast requires global level investigation, not complaints and action on a local level through complaints to the Medicines Australia Code of Conduct Committee or CRP.

When pharmaceuticals became big global business, and because they could not patent natural botanicals, they employed chemists to extract certain chemicals which they could then brand name and patent, thereby creating a source of wealth for themselves. Bayer ‘invented’ Aspirin, which was nothing more than the active ingredient in willow bark (salicylic acid) used as an analgesic for thousands of years and the industry took off. Big Pharma is scouring indigenous communities over the globe to ‘acquire the rights’ to certain plants, thereby creating new ‘in demand’ drugs, such as cures for obesity based on plants molecules.

Iatrogenic (doctor caused) deaths are around 18,000 a year in Australia, many of these caused by adverse drug reactions (ADRs) or combinations of drugs that together make up lethal cocktails. Very few complaints about this ever see the light of day. People have been conditioned to see doctors as a form of lesser god and therefore as infallible as Popes. As one doctor I worked with last century quipped ‘the medical profession buries its mistakes’. Consumers accept this as ‘the will of God’ when they perhaps should ask more questions and file more complaints.

How many deaths a year are attributable to natural medicines or the actions of natural medicine practitioners? Nationwide fewer than the fingers on my right hand, but these all receive instant media attention.

I have sent letters to countless government officials in the hope that they might listen to the plight of the 6,000 young people with physical disabilities residing in nursing homes across Australia, along with those at high risk, like myself, of becoming part of this ever-growing number!

I am now liaising with the E.W. Tipping Foundation which has agreed to build a unit complex if I can find four or five people like myself who have funding (government or private) & want to live independently with the care they require. I thought this would be an easy task but not so!

Is there any way you can help me find young people with similar needs to mine who want to live in their own purpose built unit with 24/7 care?

I am really desperate to find them so they and I can live a dignified life in a secure environment.

Any assistance would be greatly appreciated.

Cara Evans [email protected] PO Box 699, Heathmont, 3135

August 2009 — Vol 18/3 link magazine 3

Letters I support university training (and national registration)

of Naturopaths and Western Herbal Practitioners because I believe this is in the interests of both consumers who wish to find competent professionals and conventional doctors who wish to refer patients.

However, Ms. Boleszny is not correct when she states that all natural health products sold in Australia have undergone rigorous testing and clinical trials to get TGA approval. The TGA does ensure that the ingredients of listed complementary medicines are of relatively low risk but they they do not routinely assess product efficacy or the claims made.

I agree with Ms. Boleszny that the Therapeutic Goods Advertising Code is excellent and the major problem with the complaint system is the lack of effective sanctions. However, I cannot agree that most infringements by complementary medicine sponsors are minor; readers can make up their own mind by reviewing the complaint register at: http://www.tgacrp.com.au/index.cfm?pageID=13.

I agree that “Big Pharma” breach their own Code of Conduct and I have a long track record of submitting complaints against such companies. I and others advocate one Code applicable to all therapeutic claims and promotional practice; one complaint (and appeal) process, one monitoring process, and one set of effective sanctions, including corrective advertising orders and fines related to the sales income of the product and company involved.

I also support uniform national registration of all health practitioners (including complementary medicine practitioners); this will hopefully provide the transparent and level playing field for complaints against practitioners that both Ms. Boleszny and I would like to see.

Finally, I accept that conventional medicines are usually associated with more side-effects than complementary medicines; equally they have proven to be effective in many situations where the latter are not, such as antibiotics for infectious disease and some cancer chemotherapy. The key consideration for decision-making about any form of therapeutics is risk-benefit analysis. When using the Internet for this purpose reputable sources of information should be sought, such as:http://nccam.nih.gov/ and http://medlineplus.gov/.

Dr Ken Harvey MB BS, FRCPA.

Australia grows and manufactures the purest and most strictly controlled natural health products in the world. All natural health products sold in Australia have to have undergone rigorous testing and clinical trials to get TGA approval. This testing process often takes years both overseas and in Australia. In addition, prestigious universities in Australia and overseas are examining the properties of ‘old wives tales’ and finding that grandma did know best (at least my grandma’s remedies never killed anyone).

A little research on the Internet will enable individuals to see what the basis is for claims about any product, chemical or natural, bought over the counter or from a practice. Every body is different and even the most benign substance can cause an adverse drug reaction (ADR) in people with sensitivities, or be ineffective in some people while highly advantageous for most others. If in doubt, people should contact their doctor or see an internal medicine specialist for testing on chemical or food sensitivities which can provide contraindications to Big Pharma drugs as well as natural health products.

Many people have ADRs from over-the-counter medications, the most prominent being the popular anti-histamine preparations which can cause hallucinations, palpitations and narcolepsy, but reporting these to the pharmacies or TGA sees the complaints swept under the rug because they are big brand names. No-one dares take on the might of global corporations. If consumers consulted MIMS Online to read the contra-indications for their prescribed medication they would be making far more complaints rather than ‘putting up and shutting up’ because ‘doctor knows best’. Question everything.

When we see open and transparent regulation of the whole pharmaceutical industry, not just natural medicines we will discover that the reputation of Big Pharma might not be undeserved. Until then, please stop witch hunting Dr. Harvey. I hardly think that the complaints against ‘complementary medicines are more numerous, often more serious’ than the reporting of stomach bleeding causes by aspirin, kidney problems due to anti-inflammatories, or worse the deaths through drugs such as Vioxx.

Many of the most efficacious materia medica never get approval and consumers can be prosecuted for bringing them in from overseas.

Amy Boleszny B.A; A.L.A (UK); Dip. Ed.; Cert IV Training and Assessment

Dr Ken Harvey’s response:


Letters

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Only those in the same or similar situation to Estelle Shields can fully comprehend the anguish at the unfulfilled hope that one’s child with a disability will find suitable supported accommodation while they, the parents, are still alive. Estelle’s article and letter in the June issue go some way toward explaining to those parents fortunate not to suffer this circumstance, the complex mix of emotions that this situation engenders.

My former wife and I are in our late 70s and have a son, now over 50 who suffered a severe frontal brain injury at the age of 14. It is rapidly becoming impossible for either of us to care for him. Living in his own house with quite a few contact hours supplied by Brian Injury Options, now Disability SA has been tried and found not to work. While those with frontal lobe injuries can retain their pre-accident intelligence, the injury often deprives the injured of the ability to plan, to think ahead and to enjoy the drive and initiative the rest of us take for granted. They need the constant stimulation from others to get on with the things they can do and do well, but without which they lack the self-stimulation to initiate. In short they need supported accommodation where there is someone to make sure they get on with a day that they can enjoy.

Our son’s name has been on the list for supported accommodation for some time. When his case manager was asked what would happen if my former wife and I were to suddenly drop dead we were told, ‘That would be an emergency and accommodation would be found’. ‘But this emergency is likely to occur at any time at our age’, we replied. This is in no way a reflection on the case manager but on a system that fails to make sufficient suitable accommodation available. Do we have to wait until we are dead before this necessary accommodation becomes available?

Given the frequency of car accidents we believe there must be many parents in and around Adelaide in a similar constraint. We are now seeking to meet parents in a similar position who may be interested in buying or having built a set of say 6 units, five for adult children with disability and one for a person or couple who could provide the basic supervision and care. A strata title for each unit would ensure the ability to withdraw if this plan did not work out for their child. It would be expected that each person would still have their hours of outside care provided from Disability SA. This arrangement would provide all of the parents with the knowledge that this will or will not work for their child while they are still able to make alternative plans. If it worked it would not only help to set our collective concerns at rest, it would also relieve the government of the need to provide at least five places and, hopefully, support this idea making even more places available for others.

Please contact me if this proposal appeals to you and/or you would like to discuss it further.

Writer’s name and address withheld by request

The author of this letter can be contacted at [email protected] or by phoning Link on (08) 8201 3223 to obtain his telephone number. We will also forward letters sent c/- Link, GPO Box 2100, Adelaide SA 5001.

Winning Letter We recently moved from 25kms out of town to in town so

my son Aron, who has Downs Syndrome, could learn to be more independent. It worked! He took to being “a town boy” very quickly, riding his bike to his supported workplace as soon as he learnt to use a mobile. Where we lived before he had no mobile service.

As I’ve just had a major operation he has done even more things on his own. There is a small shopping centre close by and he has made friends with the chemist, the people at the small supermarket and the butcher. He’s cooked all the meals, done the shopping and looked after me very well. I am not allowed to drive for a week yet. I feel a bit sick when I wonder how we would have managed from where we used to live. I drove myself to hospital at 4am one Saturday morning.

He’s always been a great help, doing most of the housework, all the washing, and when he’s very brave, going in to get the eggs from the hen house. He draws the line at ironing as he works in a laundry and hates summer as it gets so hot in there. I have managed to get someone to come and iron by contacting the local respite group coordinators.

So Aron is my hero.

Gwen Hunter Winradyne NSW


THe HomeLeSSThe Australian Institute of Health and Welfare released a

report on homelessness in July based on data collected at the 2006 census

Th e report does not mention rates of mental illness (pre-existing or acquired since becoming homeless) but experts state it is conservatively estimated to be around 66%.

National averages

• 19% of homeless people spent the night in Supported Accommodation Assistance Program (SAAP) dwellings.

• 58% are aged 34 or younger

• 42% are aged 35 and older

• 21% are teenagers

Australian Capital Territory

• 76% of the homeless were aged 34 or younger.

• 39 % were SAAP accommodation.

New South Wales

• 45% of NSW homeless were aged 35 or older.

• 20% were in boarding houses

Victoria

• 63% were aged 34 or younger

• 31% were in SAAP accommodation

Queensland

• 49% were aged 35 or older


South Australia

• 66% were aged 34 or younger

• 26% were in boarding houses

Western Australia

• Th ere were signifi cantly more people staying temporarily with other households in WA (59%) compared with national average of 45%.


Tasmania

• 31% of the homeless in Tasmania were teenagers – 50% higher than the national fi gure of 21%.


Letters

THe HomeLeSScoUnting


For almost a century, eye exercises have been promoted as a way to strengthen vision and ease nearsightedness

and astigmatism, much like exercise for the body, trims fat and improves health.

Some of the most popular techniques include eye-hand coordination drills, eye movement routines, and focusing on blinking lights. The techniques are widely promoted online and advocated by various companies, some even claiming that they can reduce the need for glasses and ease learning disabilities. But several studies have concluded that many of these do-it-yourself techniques are baseless.

One of the latest studies, published in 2009, found little evidence in support of vision exercises that supposedly slow or reduce myopia, ease dyslexia and correct conditions caused by physiological problems, like blurred vision. A similar conclusion had been reached in a 2005 report that

reviewed 43 previous studies, finding “no clear scientific evidence” for most of the methods reviewed.

But there are some areas of vision therapy that have been scientifically validated, including one called orthoptics. In this therapy, eye doctors prescribe exercises that can relieve double vision, focus problems, and conditions like strabismus, also known as crossed eyes. Orthoptics can treat convergence insufficiency, in which the eyes have trouble working together. It affects as many as 1 in 5 people, but with the right exercises it can be all but cured, studies show.

The Bottom Line

Eye exercises are useful for some problems, but they do not seem to relieve myopia or dyslexia.

The New York Times

Can eye exerCises enhanCe vision?

Psychologists have found that swearing may serve an important function in relieving pain.

Although cursing is generally decried in public, researchers are now beginning to question the idea that the phenomenon is all bad. “Swearing is such a common response to pain that there has to be an underlying reason why we do it,” says UK psychologist Richard Stephens who led the study. Indeed, the findings point to one possible benefit: “I would advise people if they hurt themselves, to swear,” he adds.

How swearing achieves its physical effects is unclear, but researchers speculate that brain circuitry linked to emotion is involved. Earlier studies have shown that unlike normal language, which relies on the outer few millimeters of the left hemisphere, expletives appear to emanate from the amygdala, an ancient structure buried deep inside the right half of the brain.

Bloody hell, who’d have thought it!

The amygdala, an almond-shaped group of neurons, can trigger a fight-or-flight response in which our heart rate climbs and we become less sensitive to pain. The heart rates of students who underwent tests to see how long they could keep their arms submerged in freezing water, rose rapidly when they swore, a fact the researchers say suggests that the amygdala was activated.

That explanation is backed by other experts in the field. Psychologist Steven Pinker of Harvard University, compares the situation with what happens in a cat’s brain when somebody accidentally sits on the pusscat. “I suspect that swearing taps into a defensive reflex in which an animal that is suddenly injured or confined erupts in a furious struggle, accompanied by an angry vocalization, to startle and intimidate an attacker,” he says.

Source: Scientific American


Good access is as much about design as it is about the physical tools of curb ramps and tactile ground

indicators, and it’s possible to design a house with no unsightly ramps or bathrooms that look like they were ripped from a hospital – in fact, wide doors, no corridors, lever taps and step-less showers are now very fashionable. Unfortunately being fashionable does not make them standard design features, and for the most part they remain exclusive, expensive and uncommon.

Shops and supermarkets are the same. Just because there are no steps at the entrance, doesn’t mean the interior will be accessible. Most shop owners have very limited knowledge about accessible design, so doing the weekly grocery shopping can be, and generally is, very challenging for people with a disability, the elderly and parents with prams.

Every Friday morning I do the weekly shopping with my four year old in tow; regardless of disability, grocery shopping still seems to be the domain of mothers and wives, and I’m both. I go to a big shopping mall with a large supermarket because they usually have accessible car parks, shops with no steps, and the aisles tend to be wide.

Th at said, I have a problem at most supermarkets: apart from the express lane, only one checkout lane is suffi ciently wide enough for me to get through, and they are rarely open! Melbourne has what is touted to be the biggest supermarket in Australia but even that had only one accessible general checkout, and it never seemed to be open for reasons I could not fathom. Every week I would have to fi nd a staff member to open it for me; mothers with large or twin prams had the same problem.

Eventually I got angry enough to write a letter to the store manager in which I explained how many people – mums with prams, those in wheelchairs or using mobility aids – needed to use checkouts with wide lanes. Why, I asked, if at least one checkout had to be open, wasn’t it the widest one – the accessible one? It was simple common sense.

Th e following week, as soon as the supermarket staff saw me coming, they rushed to open the accessible checkout and this became the pattern. I got what I needed and maybe it

helped others because of increased awareness of the issue, but it was still not the ideal solution.

Recently I moved to Perth and did not feel at all enthusiastic about going through this whole process again but as it turned out, I didn’t have to – all the checkouts in the two supermarkets at a major shopping centre were accessible. Designed to face each other, there was no bar down the middle, which meant the checkout lanes were wide enough for me.

I later discovered these well-designed supermarkets were the exception rather than the rule, but they showed the diff erence thoughtful design makes. Th ere are of course, many other barriers when people with a disability go shopping: accessible change rooms being used as store rooms, fi nding your way around shopping centres if you are visually impaired, or the diffi culty those with hearing impairments have with incessant background music. Good design including shop fi xtures and inclusive access policies that are understood and used by staff and management in shops, can resolve these diffi culties.

Unfortunately too few people are aware that under section 23 of the Disability Discrimination Act (DDA), it is unlawful to discriminate against people with a disability or their associates – this applies to accessible checkouts, change rooms, and clear access paths. Th e recently developed draft Access to Premises Standard does not include shop fi xtures and fi t-outs, but you can still make a complaint under the DDA if these things prevent you accessing and using public buildings – and that includes shops.

You might imagine that good design and common sense would prevail, but despite repeated calls for reform, access remains a lesser priority. However, the DDA, backed by the UN Convention on the Rights of People with Disability is a powerful tool to make our voice heard.

With the right legislation and clever designers, accessible design might become extremely fashionable in shopping malls – I’m happy to settle for uncluttered, uncrowded checkout aisles!

For more information about disability rights and premises standards go to: http://www.hreoc.gov.au/disability_rights/buildings/access_to_premises.html .

shoPPing shoUldn’t Be

so HarD!By saMantha JenKinson


Angelman in 1965. Its features include severe intellectual disability, speech impediment, sleep disturbance, unstable jerky gait and seizures. While it is diffi cult to diagnose, it is estimated to occur in about one in 20,000 births.

Mary Lou fi rst realised something was amiss when Nicholas was nine months old but doctors did not agree. Two years later, she saw a little girl with AS on the Phil Donahue Show and knew immediately that Nicholas shared the same disability.

“It was a bolt out of the blue,” she recalled. “Th at’s when I started investigating. I made contact with Angelman Syndrome Association and they said ‘No, he’s doing too much to have AS’ but I knew that’s what he had.”

When Nicholas was fi ve, Mary Lou heard of a German testing technique for AS and insisted he be tested. Six months later, the family was informed that Nicholas had a very rare variant of AS that aff ects just one in two million children.

David, Nicholas, Mary Lou Carter and her husband

Trevor celebrating Nicholas’ 18th birthday.

faint heartedno JoB for the

Mary Lou Carter knows better than most the heavy emotional toll that caring for someone with a severe disability has on their family. Carolyn Collins profi les an indomitable woman working to benefi t other carers and families.

Mary Lou Carter’s younger son, Nicholas, has a rare form of Angelman’s Syndrome; he hardly slept for the

fi rst 15 years of his life. His destructive behaviour required the house to be turned into a fortress, making a normal family life impossible. From the age of six, her eldest son retreated behind the locked door of his room. Friends simply stopped calling.

Angelman Syndrome (AS) is a rare neuro-genetic disorder which was fi rst described by English paediatrician Dr Harry


continued page 39

Former friends avoided them because Nicholas would attack their small children. Looking back, Mary Lou says she never realised how very isolated she and her family were.

Frustrated, Mary Lou sought out private options. A supported accommodation program which Nicholas attended four days a week, coming home on weekends, saw his behaviour finally start to settle down.

At 12, he started at Kingsdene which had an extended learning program where the school programs were carried through to the residence. Nicholas lived in a group home next to the school during the week and came home on the weekends. For the first time, he could walk to school like other kids and he made friends.

After witnessing the dramatic improvement in Nicholas’ behaviour, Mary Lou was devastated when in 2003 the school was threatened with closure.

“I had never opened my mouth before,” she said. “But when we got the letter (saying the school was likely to close), I banged the bench and said ‘this cannot happen’. ”

Mary Lou’s efforts, along with others’, ultimately saved the school but it brought her into conflict with other disability advocates who believed schools like Kingsdene were “institutionalising” children with severe disabilities.

Nicholas can’t talk but communicates by gesturing, facial expressions and a range of noises. He doesn’t have fine motor skills, was 14 before he was partially toilet trained and has very poor co-ordination and balance problems which Mary Lou believes is associated with his epilepsy, a common feature of AS.

The effect on the Carter family has been profound. Nicholas’ inability to sleep over the years affected everyone’s sleep patterns, and as he got older and more mobile, he became increasingly destructive.

“I couldn’t have my books on a shelf; I had to pack them away for 10 years,” Mary Lou recalled. “Every piece of paper had to be quarantined otherwise he’d tear it up and stick it up his nose.”

Former friends avoided them because Nicholas would attack their small children. Looking back, Mary Lou says she never realised how very isolated she and her family were: “We were never really part of our community”.

While Mary Lou was preoccupied dealing with Nicholas, her other son, David, was finding it increasingly difficult to cope. He couldn’t have friends around and would lock himself in his room to escape his younger brother’s behaviour.

“David was the perfect infant, it was as though he’d read the textbook in utero,” Mary Lou recalled. But in Year 8, the pressure of his chaotic home life became too much and David had a breakdown.

“I put it down to the fact that we didn’t approach the school and tell them what our family situation was and that they needed to keep an eye on David,” she said. “No one understood what our lives were like.”

Mary Lou believes David’s creativity and love of music and poetry ultimately “saved” him. Now 24, he has completed a double degree in arts and law and is working with other young adults with disabilities

In the meantime, the Carters struggled on alone, trying to find appropriate schooling for Nicholas, not realising there were even such things as ‘respite services’ for families like theirs until he turned seven.

“I turned up at school and the principal said to me, ‘you look shocking’ which of course I did. She said ‘are you getting any respite?’ and I said ‘what’s respite?’” Mary Lou said. “I’m not an unintelligent person but I’d never heard of it. I had a case manager but I didn’t know what case managers were supposed to do.”

At four, Nicholas was placed in a government special school attended by about 50 children ranging in age from four to 18 but some of the older children were violent and Nicholas copied their behaviour.

“He would punch me in the face and, because I wear glasses, my eyes would get cut. He’d also rag doll me,” Mary Lou recalled.

“The prevailing ideology was that the best place for a severely disabled child was with the family, supported by resources that meet the particular needs of the child,” she said. “It is absolute rubbish…many families and many children have been sacrificed on the altar of these philosophies.”

Now aged 18, Nicholas is still “boisterous”, weighs 80kgs and is 5’11” tall, unusually large for AS. While his sleeping has settled down, as usually happens as AS children get older, he still requires very strict routines.

“He has this penchant for jumping the kitchen bench and we had to install a security grille across it. Every room has a lock on it. People talk about institutions – my home is an institution!” Mary Lou said.

But Mary Lou remains buoyant, refusing to be a victim and choosing, instead, to draw strength from her own experiences as she takes on state and federal governments in her political fight for rights and recognition of families like hers.


Disability moving on to centre stage

at lastBy Ken BaKer


It’s a lop-sided world when Australian newspapers devote several front pages to the car financing fracas dubbed

‘Ute-gate’, but few, if any, column inches are given over to the desperate, chronic shortage of disability support services across the nation.

The fact that disability doesn’t ignite political heat baffles people in the disability sector, but the intricacies of disability policy and the opaque jargon used by insiders are hardly likely to engage the interest of politicians and the public.

Still, when Bill Shorten became Federal Parliamentary Secretary for Disabilities 19 months ago he was shocked at the prevailing indifference. Speaking at the national press club a few months ago, Shorten described disability as “the last frontier of practical civil rights in this country”.

He went on: “If someone was told they could not get on a bus, train or taxi because of their sex, or their old age, or the colour of their skin, there would be an outcry. If someone is unable to get on a bus because their wheelchair won’t fit, we make no comment – we turn a blind eye.”

A strong advocate inside Government is a boon for the disability sector, especially one like

Shorten who tells it like it is: “without access to robust and adequate specialist service systems, the rights of people with severe disability and their carers remain theoretical,” he stated.

Access to “adequate specialist services” is a right denied to several thousand Australians and will remain so as long as we do not get state, territory and federal governments to make disability a priority.

There is no simple solution, but three key strategies have emerged in the last few months that point to substantial change.

Strength in unity

In June, three national peak organizations – the Australian Federation of Disability Organisations, National Disability Services and Carers Australia – joined forces to form the National Disability and Carer Alliance. The aim of the Alliance is to unite the disability sector around big issues and debate differences constructively.

As in politics, divisions in the disability sector weaken our efforts, and communicating confusing or conflicting views to governments gives them an excuse to do nothing. I’m not opposed to diversity of opinion or robust debate, but on large matters where we have common interests, it’s vital to present a united view if we are to get governments to listen. The National Disability and Carer Alliance which complements similar coalitions in some states and territories, will help to achieve this unity.

The Big Idea

An inspiring big idea which has broad appeal and can be communicated simply has also emerged: a National Disability Insurance Scheme. (Bruce Bonyhady’s article on the scheme appeared in the June issue of Link.) Currently, Australians who are born with or acquire a significant disability have no entitlement to disability services. With a National Disability Insurance Scheme however, people with severe disability would be entitled to the long-term care and support they need to engage in the life around them – at home, school, the community and in the workplace.

There’s no escaping the fact that working through the details of a National Disability Insurance Scheme will be complex and, in part, contentious. But this is a compelling idea whose time has come.

Although there’s a long way to go before governments commit to a NDIS, public support for the idea is growing, and the idea has been endorsed by The Australian, broadcaster Alan Jones and the ACTU Congress, which gives some indication of its broad appeal. Promoting the NDIS is a key goal of the newly formed National Disability and Carer Alliance.

National Disability Strategy

Within the next few months Australia will have its first ever National Disability Strategy. If well-crafted and well-supported across governments, it will result in much-needed policy changes and investment in resources. And with a National Disability Strategy in place, we are likely to see practical flow-ons from Australia’s endorsement of the UN Convention on the Rights of Persons with Disabilities.

Politics is a crowded space where hundreds of claimants compete for attention – human services especially. Sorting out legitimate claims from special pleading and then culling all but a few of the most convincing is everyday business for governments.

The old refrain: “We need money because we’re under-funded” might be true but it doesn’t distinguish your claim from hundreds of others, and it puts the cart before the horse. Having a vision, a plan that aligns with the Government’s objectives, and backing it with evidence of well-defined public benefits is far more likely to win attention. And, if all goes well, the funding cart will follow.

For the most part it takes years for important issues to be taken up by politicians and debated in the public arena – witness the decades long dispute about the greenhouse effect. Patience is required, as well as persistence and ingenuity. Now, at last though, disability is pushing and weaving its way through the crowd towards the stage.

Dr Ken Baker is Chief Executive of National Disability Services

Bill Shorten


death, ignoranCe and Bias

Care Unit, he trusted neither its infection control nor general care standards. His anxieties proved all too prescient.

Instead of the relatively straightforward procedure the Mackay family were expecting, another, far riskier operation was unexpectedly performed. Following the disastrous failure of this operation – which the family insists should never have been performed on a quadriplegic in the fi rst place – and then a terrible error in which his lungs were suctioned at 10 times the correct rate for 22 hours before

Because of his quadriplegia, businessman and community activist Don Mackay was deeply worried in

early 2007 when doctors in his hometown of Port Macquarie in NSW told him he would have to go to a major Sydney teaching hospital to get treatment for a lung problem.

Having lived with quadriplegia for 25 years after breaking his neck in a diving accident, Mr Mackay was very aware of the innate vulnerability and susceptibility of his lungs to any infection. And from past experience in the hospital’s Spinal

sUe Corrigan on tHe appalling treatment meteD oUt to tHe elDerly anD DisableD in oUr Hospitals


staff realised the mistake, Mr Mackay suff ered a respiratory arrest. After almost six weeks of terrible suff ering in Intensive Care, Don Mackay died, aged just 56, in May 2007.

Over the past two years, Don’s widow Th erese has fought relentlessly to call those doctors and nurses she believes directly responsible for her husband’s suff ering and death to account. So far, however, the most she has received is an apology in writing from a senior hospital executive, admitting it was “clear” that the care provided “let you, Mr Mackay and your family down in a number of ways. We deeply regret this, and apologise for the distress you have experienced”.

Mrs Mackay, who is now writing a book about her husband’s treatment, is far from mollifi ed. “Doctors operated on Don’s lungs without the most basic pre-operative checks”, she says. “Th is would be unacceptable in any circumstance, but for someone with the complex medical problems that result from quadriplegia, it was inexcusable. Don knew that for him, any surgery or anaesthetic was deadly serious. All quadriplegics know the grave dangers of any interference with their lungs. And you’d assume that senior medical specialists in one of Australia’s leading teaching hospitals would know that as well – but apparently not.”

While offi cial statistics and anecdotal accounts alike demonstrate that doctors cannot always be trusted and that hospitals can be very dangerous places for any patient, there are a number of reasons why people with disabilities are singularly vulnerable to the eff ects of medical and nursing mistakes, incompetence, ignorance of their often complex medical needs and lax care standards.

With around 10 per cent of all patients grievously harmed or killed by hospital error of one form or another, health safety

experts like Jeff rey Braithwaite, Professor of Public Health and Community Medicine at the University of NSW, point out that the only really eff ective safeguard is for patients to be constantly “vigilant” about what doctors and nurses are doing to them.

“Health care is risky and dangerous, even more so these days because of the complexity of care provided”, Prof. Braithwaite says. “Patients either need to be their own advocate and watch what’s going on very closely, or have people – family, friends or colleagues – look out for them.”

But where does that leave patients with a severe physical or intellectual disability that impairs their capacity to monitor what is being done to them, or to relay information to and communicate with health care workers? What if doctors, nurses and allied health professionals have no training or experience in dealing with a particular disability? What if doctors unthinkingly perform an operation or procedure that would be routine for a non-disabled patient, but likely to prove fatal for patients, like Don Mackay, with a disability such as quadriplegia? And, worst of all, what if health care professionals at some level regard the life of a frail, elderly patient or a person with a severe disability as just that little bit less valuable than that of younger, non-disabled patients?

Th is page, left to right: Don with his family - Alison, Melissa and wife Th erese in the back; Don in ICU, before he became infected. Opposite page: Don just before he became ill – Sept 2006

Despite recent advances, the standard of medical care given to people with a disability in Australia frequently falls far below that experienced by the general community.


Therese Mackay believes patients with disabilities definitely suffer serious, potentially fatal, forms of discrimination in hospital. Because, by the very nature of their disability, they have higher practical care needs, she says they can be very quickly labelled “nuisance” patients by many nurses – and as a result, “blanked”.

“However loudly Don called for help, there were many nurses who simply pretended they didn’t hear”, she says. “I come from a family with a nursing tradition, and I know what is acceptable. The quadriplegic patient opposite Don knew exactly how to play the game. He carefully kept his needs to a minimum, so as not to be labelled a nuisance and then ignored. Disabled people and their relatives who have experienced hospital care know what I am saying is the truth.

“Another form of discrimination is that even some of the medical staff, who you really would expect to know better, assume that because a patient has a physical disability, they must be intellectually impaired too. Some doctors would talk to Don in a loud, slow voice, or else direct questions meant for him to me, even when he was fully aware and watching. The level of ignorance about disabilities among supposedly highly trained healthcare staff is also inexcusable. Don and I were both amused and bemused at how many Intensive Care nurses would ask him why he couldn’t move his legs.”

Victorian GP and health academic Dr Jane Tracy, herself the mother of an adult son with cerebral palsy, acknowledges that despite recent advances, the standard of medical care given to people with a disability in Australia frequently falls far below that experienced by the general community.

As Education Director of the Centre for Developmental Disability Health Victoria, based at Monash University, Dr Tracy devotes her working life to improving health professionals’ awareness, knowledge and skills in treating people with disabilities of neurological origin such as

cerebral palsy, autism and learning difficulties. But she says that while curriculum changes for trainee doctors and other healthcare workers, which she herself has played a key role in introducing, are gradually improving the care of people with disabilities, there is still a way to go.

“People with developmental disabilities are 50 times more likely to die before the age of 50, and up to five times more likely to have a mental illness compared to the general community”, she says.

“While these statistics are of course partly due to the nature of particular disabilities, it is also the case that many medical problems in such patients go undiagnosed or under-treated. Chronic complex medical conditions, combined with communication and cognitive problems, mean many people with developmental disabilities often find it difficult to have their symptoms recognised or treated. And as a result, they simply aren’t getting the care they need.”

Although unable to comment on any individual cases, Dr Tracy said one disturbing story put to her by Link typified how communication breakdowns and lack of co-ordination between different sections of the health care system can cause horrendous problems for patients with disabilities.

In January 2008, Jo, a 30-year-old South Australian woman with cerebral palsy who works part-time but who cannot walk and has difficulty speaking, began to experience intense pain in her right hip. Twelve months later, her hip joint, plus 10cm of femur, or leg bone, were removed, but because of the fragility of her bones, a hip replacement was not possible. After two weeks in hospital, Jo was sent home – without any essential follow-up rehabilitation or modifications to her wheelchair to ensure her torso remained upright .

As a result, Jo’s right femur kept sliding into her ribs, causing her severe pain. Her family say this was reported to the orthopaedic surgeon and GP several times, but Jo was simply prescribed morphine patches and told she had no

Alexander Buckwalter Jo Shepherd


choice but to live with the pain. Eventually, after strong complaints from Jo’s family, she was sent to a rehabilitation hospital, where she spent four weeks in traction, and where her wheelchair was finally modified to keep her torso upright.

Sydney resident Maree Buckwalter, whose 23-year-old son Alexander has severe epilepsy and an intellectual disability, says she is convinced healthcare workers treat patients with an intellectual disability with far less attention and respect than would otherwise be the case.

“As a parent, it is your responsibility to learn all you possibly can about a disabled child’s health needs and problems, because you are almost certainly going to have fight every step of the way for appropriate care and treatment”, Mrs Buckwalter says.

She recounts that at 17, her son had what appeared to be a stroke on his way home from school, leaving the entire left side of his body paralysed. But she says that when she called Alexander’s neurologist, he said it was almost certainly a transitory problem and advised her just to put him to bed and wait 24 hours.

Early next morning, with her son’s condition unchanged, Mrs Buckwalter called an ambulance, but says she and Alexander were then made to wait for a nightmarish 13 hours in Accident & Emergency before he was admitted to a ward at 2am. In the morning, a neurologist confirmed Alexander had had a stroke. She says even then, however, she and her husband were left entirely alone to work with Alexander and teach him how to walk again. When, after six weeks, her son was discharged, she says she was left without any help or assistance to hire a wheelchair for him.

“Doctors, nurses and other hospital staff just seem to be so overworked these days, they appear to have lost all humanity”, an angry Mrs Buckwalter says today. “So many doctors and nurses are also from non-English speaking backgrounds, which often makes communication even

more difficult and error-prone. I cannot imagine how people with intellectual disabilities or speech problems, who have no family or friends available to sit constantly by their side, watching out for what is being done – or not done – to them and explaining their needs, how they must fare in hospital. Their extreme vulnerability to neglect and mistreatment is very upsetting to contemplate.”

As numerous anecdotal accounts suggest, aged people are also at greater risk than the community as a whole of suffering poor standards of care. A friend whose 71-year-old mother died of breast cancer told me recently that when he requested his mother’s medical notes from her GP, he was horrified to see the referral to a cancer specialist had been marked ‘non-urgent’.

“I’m convinced that assessment was made not on medical grounds, but solely because of my mother’s age”, he says. “And, as events proved, even if that assessment was made on medical grounds – it was wrong.”

In another disturbing case brought to Link’s attention, an elderly NSW woman who spoke only Italian and was dying of leukemia was dropped by nurses when being transferred from her nursing home bed to a wheelchair. An X-ray revealed a broken leg – but the lady was not told and later that day, when her family called to take her out, staff entirely failed to mention this fact to them too. With the fracture left untreated, the family only found out many days later why the woman was in such pain.

Dr Tracy says improved education and training for all health care workers on the particular needs of people with disabilities and the aged are key to raising health care services and outcomes.

“Up until 10 years or so ago, there was little if any specific teaching or training for doctors and nurses on disability issues”, she says. “The attitudes doctors and other healthcare workers have to people with developmental disabilities are also vital, and attitudes are influenced by knowledge.

“Of course, we can’t give medical undergraduates detailed training in every type of disability, but we don’t need to. We just need to give them a good general framework for understanding developmental disability, and the needs of and challenges for people with such a disability.

“Another extremely important development was the introduction in July 2007 of Medicare rebates to enable GPs to provide regular, thorough health checks and screening for people with developmental disabilities, thereby encouraging pro-active health care.

“We have come a very long way in the past 20 years in services for people with developmental disabilities, but there is still a long way to go before the disparities in care standards and outcomes are removed altogether.”

As a parent, it is your responsibility to learn all you possibly can about a disabled child’s health needs and problems, because you are almost certainly going to have fight every step of the way for appropriate care and treatment


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6 - 9 September 2009 Hilton Hotel, Sydney

Prime Minister Kevin Rudd’s wife Th érèse Rein has been appointed

patron of International Day of People with Disability.

Ms Rein says she is well aware of the challenges people with disabilities face, after she helped care for her father who was a paraplegic.

Th e late John Rein, an RAAF navigator, became wheelchair bound after an air crash during World War II. He went on to become an aeronautical engineer, paraplegic gold medallist and computer software analyst.

“As a paraplegic he knew personally the challenges of physical accessibility to buildings and public facilities and, along

with mum, creatively solved many of those problems,” she said in a statement.

Ms Rein said her father, as a paralympian, taught her the importance of striving for excellence, and as an aeronautical engineer he showed the contribution people with disabilities can make to the workforce. “As a father, he showed that parents with disabilities are as loving as any other parent. He inspires me.”

AP

International Day of People with Disability will be held on December 3.

Ms Rein is also patron of an indigenous literacy program, a homeless shelter organisation and the National Portrait Gallery.

PM’s wife does her Part for international disaBility day

Spinal cord injury (SCI) is sudden and unexpected, and it can be devastating and costly in human and social

terms. Since the 1970s improvements in acute care and rehabilitation have resulted in significant reductions in early deaths, especially from respiratory and renal diseases.

• About 380 new cases of SCI occur each year; two thirds are caused by trauma (road accidents and falls) and the rest are the result of disease. Approximately 11,500 Australians live with persistent spinal cord injuries.

• SPIs cost Australians $500 million per year based on 2005 figures – and that is only for care and equipment, not medical or ancillary treatment.

• Males are two and a half times more likely to sustain a SCI than females and the highest incidence of trauma related SCI (25%) occurs in males between the ages of 15-24. Of those with persisting SCI from traumatic causes, 82% were male and 18% were female.

• Male rates of traumatic SCI drop from the early twenties until the mid-fifties, then rise again until the mid-eighties. A similar, although less pronounced pattern, was seen for females.

• Damage to the cervical region of the spine accounts for 47.7% of SCIs.

• Rates of readmissions jumped 80% between 2001/02 and 2005/06 – most were due to urinary tract infections. Other causes were pressure ulcers, respiratory diseases, followed by surgical and medical complications and fractures of the femur.

• People admitted to hospitals with a spinal unit were more than twice as likely to receive rehabilitation care than those admitted to hospitals that did not have a spinal unit.

• 49% of hospital admissions were for some form of allied health intervention, generally physiotherapy. Spinal procedures were relatively uncommon for readmitted patients but 10% of all readmissions were for interventions involving the bladder. Less than 3% were for ventilatory support.

• Around 40% of people with SCI return to work; however, resuming paid work is not only determined by physical abilities and rehabilitation, but also by economic circumstances and the willingness of employers to hire workers with disabilities.

sPinal Cord inJUries

STATISTICSPM’s wife does her Part for international disaBility day


siXteen years after the dda, the rights Battle is still Being foUght Part one

Sixteen years ago the Disability Discrimination Act became law in Australia and many people with disabilities – including social worker and advocate Maurice Corcoran – believed the bitterest battles for basic human rights were over. Wrong.

After the Disability Discrimination Act was introduced in 1992, many disability advocates believed, somewhat

naively, that the hardest part was over and the weight of legislation would be enough to remove social, attitudinal and physical barriers. I’ve been involved in numerous

disability discrimination complaints since the Act came into force and I fi rmly believe the burden of challenging and eliminating inequalities still remains for people with disabilities, their families and advocates.

Laws and regulations are put in place so that we are safeguarded against being treated unfairly and can seek redress when our rights are infringed. Virtally all our laws are policed and victims of crime do not have to lodge complaints against the perpetrators. Yet this task falls to people with disabilities in a way that suggests: ‘you want rights – here’s the legislation – you fi ght for them!’

And fi ght we have but the emotional costs are steep and many people feel too burnt out to keep pushing, particularly after legislative amendments were made by the previous Howard government which meant that people

Paul Munnari, an air traveller aff ected by Virgin Blue’s policy on passengers in wheel-chairs. SMH Picture by STEVEN SIEWERT



with disabilities had to cop all legal costs if they pursued discrimination cases through to the Federal Court and lost.

In June 2006, Virgin Blue introduced an Independent Travel Criteria which stipulated that if you couldn’t pull down an oxygen mask and fi t it, pull out a life-jacket and fi t it, and get yourself off the plane in an emergency, you had to travel with, and pay for, a carer.

It was a clear breach of the disability standards for accessible public transport. I’d been very involved in developing those standards and at the time I was also chair of the Australian Federation of Disability Organisations and I felt a responsibility to make a complaint to the Australian Human Rights Commission (AHRC).

Th e Public Interest Advocacy Centre in NSW became involved and provided me with legal assistance to draft the complaint as well as unwavering moral and emotional support while we pursued the case.

Any possibility of conciliation through the AHRC disappeared as the airline refused to alter their travel criteria. Th ey claimed they had a duty of care to customers

like me: if I couldn’t adhere to their criteria, I needed to travel with a carer at my cost, for my own safety!

Pursuing the case meant taking it to the Federal Magistrates Court where, if I lost, I would have to pay Virgin Blue’s legal costs. Th is was an intimidating prospect but if I didn’t proceed, the airline would get away with blatant discrimination. My legal representative argued for costs to be limited as the case was in the public interest; the judge put a ceiling on the amount to be awarded against me – $50,000 though was still daunting!

A number of infl uential people assured me that if I lost they would set about raising funds but there was no guarantee. To my mind it is unconscionable that individuals like myself have to risk so much when attempting to get major providers of goods and services (such as this airline) to comply with Australian regulatory legislation.

Th e case is still proceeding through the Federal Court – it has been extremely stressful to say the least. For people with disability, the rights battle is far from over!

In the October edition of Link Maurice Corcoran discusses the inadequacy of Australia’s public transport, particularly travelling by bus.

People who work in the health and community services sector are the most stressed in Australia, according

to a report from Safe Work Australia. In second place are teachers, followed by those working in “personal and other services” e.g. religious, and special interest groups.

Women say nursing and carer jobs are the most stressful, then labour intensive jobs and other health professions. For men, labour intensive work, trades and transport are high stress occupations.

Workers’ compensation claims for stress are two and a half three times higher than other claims. Th e average

health & coMMunity worKers most stressed

compensation payment for Australian workers in all industries is $6,100; for mental stress it is $15,500.

Similar results occur when comparing the average time off work for all claims and that for stress.

Ingrid Ozols from Mental Health at Work says: “We know that stress can sometimes have a very serious impact on the mind and body, or may exacerbate pre-existing conditions. Th at’s why we want people to think preventatively, and consider actively managing their stress early before it escalates to a dangerous level.”


While some of the Federal Government’s economic stimulus measures have been controversial, the

allocation of $6.4 billion for building 20,000 new houses and refurbishing a further 2,500 existing dwellings for disadvantaged Australians, not only addresses massive gaps in public housing but will also deliver a much needed boost to the building and construction industry.

Th e initiative is the fi rst signifi cant move towards meeting the aims of the National Aff ordable Housing Agreement: “all Australians having access to aff ordable, safe and sustainable housing that contributes to social and economic participation”.

Th e fi rst priority of the initiative is to provide Australia’s large homeless population with decent, aff ordable accommodation; the government also anticipates the scheme will reduce pressure on public housing waiting lists (expected to halve) from age and disability pensioners,

Allocating $6.4 billion for public housing was designed primarily to stimulate the economy. But it may also result in several thousand people with disability being properly housed for the fi rst time in their lives. However, the initiative will only succeed writes Geoff Barber by paying close attention to the design and the needs of people with disabilities.

PUBliC hoUsing: the risKs and rewards


Indigenous people and women with children escaping domestic violence. The numbers of low-income households currently spending over half their income on rent are also expected to drop.

By December 2010, 75 per cent of the new dwellings will be completed and the refurbishment of 2,500 places, once unfit for occupation, will swell the availability of public housing even more.

Increasing the number and range of accessible houses for people with disability is a very welcome opportunity, but there is the potential for things to go awry.

What can go wrong?

In the rush to get houses built we run the risk of good accessible design being overlooked and some past mistakes being repeated. So for example, care needs to be taken to avoid outdated housing designs and dense groups of houses that result in large pockets of socially disadvantaged people being disconnected from the broader community: mini-institutions in effect, rather than domestic accommodation.

It would be too bad if at the end of this stimulus project, government officials brushed their hands together and said “building good homes for people with disability was too hard! We just had to get houses built.”

This is critical stuff. Houses have a lifespan of 30 years or more, and factors such as structural design, location and construction materials, if not thought through adequately can be a major barrier for people wishing to live as independently as possible and connecting to thecommunity.

Unless the details of the design are attended to properly, people have to rely on others for assistance. Some critically important design features are things like wider than usual door frames, putting light switches at the right height so that someone with a mobility restriction can operate them, or using contrasting colours on kitchen bench tops for people with visual impairments.

Purpose-built accessible houses take no more time to build than standard homes. Sometimes the design features mean they cost a bit more but seriously, it’s not a lot more, especially if it’s done at the outset.

States and territories are obliged to ensure social housing tenants can participate socially and economically in community life and that means making sure houses are located close to transport, services and workplaces.

State, territory and federal governments have an unparalleled opportunity to work closely with accessible design consultants and developers to build homes for people with disability that reflect contemporary domestic housing design.

Basic rules of thumb

As well as governments and developers, the following principles are a useful guide for people with disability who are considering building or looking for a suitable place to move into.

1. Locations with any significant gradient should be avoided. When people can’t get out and about independently, they become reliant on others for assistance with the basics of life.

2. Avoid houses located near existing institutions or ‘facilities’ – these often reinforce negative stereotypes about the occupants.

3. When special access features are required they should be designed and installed to maximise the ‘ordinariness’ of the house where possible so it looks like a regular house in a regular street. First and foremost the design should be focused on the needs and aspirations of the tenants, then appropriate consideration given to the needs of medical and support staff.

4. Is the building located in an area that contributes to the tenant’s connection to the community or is it located in the back blocks or a commercial area?

5. If the number of tenants and staff in a house is so large that tenants can’t introduce themselves easily or be introduced to visitors, there are too many people living and working there! Let’s not lose sight of the objective: the primary purpose of the dwelling is to be someone’s home, not the support worker’s workplace or a “rack ‘em and stack ‘em” facility.

6. Avoid a concentration of specific housing in one suburb. If the street is full of support worker’ cars and the neighbours refer to the development as those “disability houses” rather than “Frank’s house” or “Jenny’s place”, then a pod of exclusion has been created.

Quality, affordable, accessible housing is key to giving those living with disability a fair crack at life. Many governments are starting to ask the right questions, but I repeat, good housing design is all about the details, and these can be all too easily overlooked in the rush to deliver. Accessibility, done properly, benefits everyone.

In the rush to get houses built we run the risk of good accessible design being overlooked and some past mistakes being repeated.

22 link magazine August 2009 — Vol 18/322 link magazine August 2009 — Vol 18/3

tHe proFoUnD losses oF early onset Dementia

a dying mind: Kate Swaff er and her husband Peter Watt


A few weeks before her 50th birthday, a highly intelligent, vibrant woman learned she had early onset dementia. Carolyn Collins discovers what it is like to confront the loss of memory and identity, and premature death.

At an award ceremony for a university poetry competition last year, a group of poems describing a

middle aged woman’s struggle with dementia caught Kate Swaffer’s eye. Reading them, she began to cry.

“My disability advisor came up to me and put her arm around me,” Kate recalls. “She said “Are you all right?” and I said, “Oh my god, it’s just like reading about me”. And she said: ‘You wrote them’.”

Kate, who graduated in April with a Bachelor of Arts (Writing and Creative Communication) won second prize in the poetry contest. But what should have been a day of celebration was tinged with the cruel knowledge that Kate’s once photographic memory and talent for creative writing were being steadily, and irrevocably, eroded by a rare form of early onset dementia.

While dementia, particularly Alzheimer’s, is typically associated with the elderly, semantic dementia is a form of fronto temporal dementia (FTD), which can affect people under 65. It leads to a progressive loss of the ability to remember the meaning of words, faces and objects, as a result of shrinkage of the temporal lobes of the brain.

Confirmation of the diagnosis came at a time when she and her husband Peter Watt were looking forward to embarking on a new chapter in their life now that their sons (aged 18 and 19) had finished school.

But instead of planning an extended overseas adventure and their semi retirement, Kate and Peter have spent the last few months checking out nursing homes, organising an aged care assessment [ACAT] and domiciliary care, finalising wills and “anticipatory medical directions” for when she can no longer make decisions about end of life care. Together they are ensuring everything is in order for the time when Kate inevitably enters what she refers to as ‘the Twilight zone’.

For Peter, this process has been confronting but he stresses the importance of “getting organised while you can. It’s about having some say. Make sure your will is done, make sure you have done your power of guardianship, make sure you have your anticipatory direction if you don’t want someone to tube-feed you and keep you alive.

“Because if you don’t do them, you are actually leaving your loved ones to do all that for you and it’s not fair. It’s

heartbreaking to do but I think you do get to the stage where there is a great deal of comfort once it’s done.”

Statistically, Kate is only too aware that those with early onset dementia die on average within three years of their diagnosis. She speaks of the “extraordinary sense of loss” in knowing that it’s unlikely she’ll make it to her sons’ 21st birthdays, let alone their weddings.

For this high-achieving woman, who once worked as an operating theatre nurse and then chef and manager of a prestigious reception house and at the same time ran her own specialist cake business, it’s now a race to complete all the tasks she has set herself, from finishing her second degree in psychology and honours in creative writing this year, to sorting out photographs and writing letters to her loved ones.

But it’s getting increasingly difficult. Research that once took Kate 30 minutes, now takes her 10 hours, and she often can’t remember anything of the books she has read, or even that she’s read them, and she constantly misspells simple words like ‘that’.

Research that once took her 30 minutes, now takes her 10 hours and she often can’t remember anything of the books she has read, or even that she’s read them, and she constantly misspells simple words like ‘that’.

In March, Kate lost her driving licence. Sometimes she can remember how to use a hair dryer, sometimes not, and she has to consult a cookbook to roast potatoes. Increasingly, Kate glimpses monsters or wildcats out the corner of her eye, and although she is able to recognise them as hallucinations now, she is terrified of losing control of her mind altogether.

These days Kate wears a security bracelet in case she wanders off and cannot find her way home. Kate knows it may not be long until she can no longer be left alone. “I have this strange sense of watching myself die little by little,” she says. “It’s very odd.”

Yet sitting beside this articulate professional woman in her spectacular home in the Adelaide foothills, it is easy to understand why many friends, university lecturers and family members still have difficulty accepting Kate’s

24 link magazine August 2009 — Vol 18/324 link magazine August 2009 — Vol 18/3

diagnosis. But what no one except those closest to her can see is the huge internal struggle Kate must overcome to keep up the appearance of normality in order to “preserve my dignity”.

“Even the neurologist in Melbourne said to me last week, ‘You are always so articulate’, but she doesn’t hear my inner voice churning 100mph to fi nd a word and to be able to say it properly because to speak incoherently is so embarrassing and humiliating,” Kate explains. “People say to me ‘you haven’t got memory loss’ or ‘you’re no diff erent to my mother’ but their mother is 85 – I’m sorry but I’m 50 and I fi nd that highly distressing.”

Th e social worker was able to direct the couple to all the services available to them, and outline the processes they needed to follow to ensure Kate had access to a high care nursing home when the time came. Kate wonders how they would have got on had they not known someone who could point them to the services and support available, as their GP and a counsellor were as fl ummoxed as they were.

Kate says it had been diffi cult for her younger son, who still lives at home, to watch her progress from a highly capable woman to someone who is sometimes “too scared to leave the house”. It has also been diffi cult for her parents, who live in the country.

“My parents have really struggled accepting it,” she says. “It has been very hard for them to know that I am looking for a nursing home for myself, not them.”

Kate’s mother Joy Swaff er says she was horrifi ed and angry when her “beautiful, talented daughter” told her she had semantic dementia. “(It was) an anger that I had never felt before, an anger that would not go away,” Joy says. “Th ere was nothing I could do. I felt so helpless. Th en the anger subsided and I was left with a feeling of deep, deep sadness. I try to enjoy shared times together, remembering our bright energetic little girl. I cannot contemplate what lies ahead for her.”

Kate says she has been frustrated by the lack of services and support for younger dementia suff erers, with most government agencies and support groups geared solely for the elderly. “I need to talk to somebody else my age who has this,” she says. “I want to be in touch with people who I can talk to, not sit and knit with.”

Having experienced a lot of sudden deaths among friends and family, Kate says it is “strangely comforting” to be given an opportunity “to tell the people I love, that I love them and to maybe set things right with people I might have fallen out with”.

Creative writing continues to be therapeutic, if increasingly diffi cult: “I have a little notebook that I carry around with me but sometimes by the time I have got the book and the pen out, the thought is gone.”

My parents have really struggled accepting it... It has been very hard for them to know that I am looking for a nursing home for myself, not them.

Peter says the irony is that Kate’s ability to “cover up”, as she calls it, makes it diffi cult for those on the outside to see anything wrong, leading to misunderstandings. But covering up is getting more diffi cult. Recently, he came across Kate standing in the bathroom holding a pair of his socks, clearly at a loss to know what they were.

“A little while ago we were having tests done to establish Kate’s level of impairment, so I can claim a carers allowance and the GP asked Kate to count from 20 to zero – it was one of the most horrifi c things I’ve ever seen,” he recalls. “She couldn’t hide it, she couldn’t do it. She missed two or three numbers and got numbers back to front.”

It was not until recently, when a former colleague put Kate and Peter in touch with a nursing home social worker that Kate felt she had received any real help. But as they pulled into the aged care facility where Kate had once given seminars, they were overwhelmed with grief that it was Kate not an elderly relative they had come to discuss.


Following surgery for a rare brain malformation some years ago, Kate discovered she had been left with a highly unwelcome side-effect that has since worsened – incontinence.

Oh my God,” I thought to myself, “I’ve wet my pants again!” I could remember being told off as a very

small child for doing just that. Incontinence makes me feel unclean, ashamed, unworthy and “naughty”. For years I was loath to tell anyone about it, especially not my doctor. I felt, and still feel, very embarrassed, although I know no-one can see it.

My first career was nursing, but for years I resisted the idea that I was incontinent. I tried to convince myself that it was normal for someone my age, and “it must be my own fault for not having done those bloody pelvic floor exercises when I was pregnant”. However, incontinence is not normal. You may be able to prevent incontinence or even cure it but the key is seeking help as soon as possible even when the symptoms are slight.

When I came around to acknowledging I had a problem, I felt too humiliated to tell my specialist or general practitioner for a long time. When I did, they reacted glibly and neither recommended an investigation. The emotional and practical ramifications for me, such as wetting myself frequently, having to wear incontinence pads, or the effects on my marriage and social life were never discussed.

Yet for some reason I felt as if I had over-reacted, so I let the topic go for a few more months but when it became unbearable, I brought it up again with my specialist who arranged for me to see a specialist in urology. After numerous tests, she concluded I had severe urge urinary incontinence. It was not me who was surprised. Since then I have developed urinary and faecal incontinence. To be honest, it is hideous.

Despite all the tests, doctors have not been able to ascertain why I have become incontinent. All they can say is that it is “probably neurogenic in nature” and was brought about by the brain surgery I had a few years ago. In plain English, I do not get the message to urinate or to use my bowels until the very last moment, and my bladder leaks, even if I have just emptied it (still no brain message to tell me it is going to happen). The only way I have been able to manage it is to do what is termed ‘timed toileting’, meaning I go to the toilet at set times of the day and night. If this is not possible for some reason, then my flash continence pads catch the fall-out!

Most people cannot imagine how much this impacts on my life. There are the physical effects such as always having to wear thick, uncomfortable continence pads with special crystals inside that convert the urine into gel, just like a baby’s nappy. Lucky me! (In case you’re wondering, sanitary napkins cannot cope with moderate to severe incontinence.) I cart these pads with me wherever I go.

And there’s the embarrassment of wetting my pants or the bed if I forget to wear them, the smell of urine always just a nostril or two away, and the excoriation of my inner thighs if this happens too often – treatable, but very uncomfortable. The pads and medication to stop the leaking are costly and this very expensive medication also has unpleasant side-effects. And then there is the near loss of my sex life: these days I rarely, if ever, feel sexy or want to be intimate because the thought of leaking urine during sex is just too horrible.

Now that I have faecal incontinence as well, my fear of accidents in public or at home has heightened because nothing can disguise that rank pervasive odour. More than ever, I want to stay home and isolate myself from friends and community life. And while I’ve been able to control my urinary incontinence to a degree with timed toileting, my bowels don’t respond to a clock and I cannot open them on command.

Incontinence is not easy to live with. Seek professional advice quickly, and obtain support and counseling from a trained continence nurse who will assist you to manage it. You may be eligible for funding to assist with the cost of continence pads and necessary apparel. Your doctor will have details on this.

The Continence Foundation of Australia’s (CFA) website is very useful and easy to use: http://www.continence.org.au/site/index.cfm.

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“


Theo Schapel’s gentle, refl ective demeanour would have fi tted well in a contemplative order, Buddhist or

Christian, but while spirituality is his lodestar, Th eo is no emotionally contained monk and any equanimity he now enjoys has been hard won.

Th eo was 15 when he had the fi rst intimation that his mind was diff erent. Lying alone in a paddock at his uncle’s farm he heard a voice that he recognised. “I am here,” it said. Th eo wasn’t perturbed: it was his voice. Around the same time Th eo’s form master admonished him for focussing overly on exam results. “Th ere are other things in life more important than that Th eo.” It was a revelation.

Coming from a family where achievement was hallowed, Th eo had never entertained the possibility of anything less than a Nobel Prize, but from then on, he says, “I purposely didn’t try as much as I could. I knew I was smart and I thought that your intelligence was refl ected in your grades.

Th e cleverest of a group of very intelligent boys at Adelaide’s prestigious St Peter’s Boys College, Th eo Schapel had the ability to pursue a career in any fi eld he wished – maths, literature, music, or computing. But in 1989, six months into a science degree, Th eo mentally unravelled, writes Denny Rosey.

songs of love, loss and exPerienCe

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Christian, but while spirituality is his lodestar, Th eo is no emotionally contained monk and any equanimity he now enjoys has been hard won.emotionally contained monk and any equanimity he now enjoys has been hard won.emotionally contained monk and any equanimity he now enjoys has been hard won.enjoys has been hard won.

Th eo was 15 when he had the fi rst intimation that his mind

enjoys has been hard won.



Th eo was 15 when he had the fi rst intimation that his mind fi eld he wished – maths, literature, music, fi eld he wished – maths, literature, music, or computing. But in 1989, six months fi eld he wished – maths, literature, music, or computing. But in 1989, six months fi eld he wished – maths, literature, music, or computing. But in 1989, six months fi eld he wished – maths, literature, music, or computing. But in 1989, six months fi eld he wished – maths, literature, music, or computing. But in 1989, six months into a science degree, Th eo mentally or computing. But in 1989, six months into a science degree, Th eo mentally or computing. But in 1989, six months into a science degree, Th eo mentally into a science degree, Th eo mentally into a science degree, Th eo mentally unravelled, writes into a science degree, Th eo mentally unravelled, writes into a science degree, Th eo mentally unravelled, writes unravelled, writes

loss and exPerienCe

intelligent boys at Adelaide’s prestigious Th e cleverest of a group of very intelligent boys at Adelaide’s prestigious Th e cleverest of a group of very Th e cleverest of a group of very intelligent boys at Adelaide’s prestigious St Peter’s Boys College, Th eo Schapel

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link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3

thought that your intelligence was refl ected in your grades. thought that your intelligence was refl ected in your grades. thought that your intelligence was refl ected in your grades.

link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3

didn’t try as much as I could. I knew I was smart and I didn’t try as much as I could. I knew I was smart and I didn’t try as much as I could. I knew I was smart and I thought that your intelligence was refl ected in your grades. didn’t try as much as I could. I knew I was smart and I didn’t try as much as I could. I knew I was smart and I thought that your intelligence was refl ected in your grades. didn’t try as much as I could. I knew I was smart and I didn’t try as much as I could. I knew I was smart and I thought that your intelligence was refl ected in your grades. thought that your intelligence was refl ected in your grades. thought that your intelligence was refl ected in your grades. thought that your intelligence was refl ected in your grades.

link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3 link magazine August 2009 — Vol 18/3

Th eo had never entertained the possibility of anything less than a Nobel Prize, but from then on, he says, “I purposely Th eo had never entertained the possibility of anything less Th eo had never entertained the possibility of anything less than a Nobel Prize, but from then on, he says, “I purposely Th eo had never entertained the possibility of anything less than a Nobel Prize, but from then on, he says, “I purposely Th eo had never entertained the possibility of anything less than a Nobel Prize, but from then on, he says, “I purposely Th eo had never entertained the possibility of anything less than a Nobel Prize, but from then on, he says, “I purposely than a Nobel Prize, but from then on, he says, “I purposely than a Nobel Prize, but from then on, he says, “I purposely didn’t try as much as I could. I knew I was smart and I

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or computing. But in 1989, six months fi eld he wished – maths, literature, music, or computing. But in 1989, six months fi eld he wished – maths, literature, music, fi eld he wished – maths, literature, music, fi eld he wished – maths, literature, music, fi eld he wished – maths, literature, music, or computing. But in 1989, six months or computing. But in 1989, six months or computing. But in 1989, six months or computing. But in 1989, six months or computing. But in 1989, six months or computing. But in 1989, six months or computing. But in 1989, six months or computing. But in 1989, six months or computing. But in 1989, six months or computing. But in 1989, six months into a science degree, Th eo mentally into a science degree, Th eo mentally or computing. But in 1989, six months into a science degree, Th eo mentally or computing. But in 1989, six months or computing. But in 1989, six months or computing. But in 1989, six months into a science degree, Th eo mentally or computing. But in 1989, six months into a science degree, Th eo mentally into a science degree, Th eo mentally into a science degree, Th eo mentally into a science degree, Th eo mentally into a science degree, Th eo mentally into a science degree, Th eo mentally into a science degree, Th eo mentally into a science degree, Th eo mentally into a science degree, Th eo mentally unravelled, writes into a science degree, Th eo mentally into a science degree, Th eo mentally into a science degree, Th eo mentally unravelled, writes into a science degree, Th eo mentally into a science degree, Th eo mentally into a science degree, Th eo mentally

have fi tted well in a contemplative order, Buddhist or Christian, but while spirituality is his lodestar, Th eo is no Christian, but while spirituality is his lodestar, Th eo is no Christian, but while spirituality is his lodestar, Th eo is no Christian, but while spirituality is his lodestar, Th eo is no Christian, but while spirituality is his lodestar, Th eo is no emotionally contained monk and any equanimity he now St Peter’s Boys College, Th eo Schapel St Peter’s Boys College, Th eo Schapel

had the ability to pursue a career in any St Peter’s Boys College, Th eo Schapel had the ability to pursue a career in any St Peter’s Boys College, Th eo Schapel had the ability to pursue a career in any had the ability to pursue a career in any had the ability to pursue a career in any had the ability to pursue a career in any fi eld he wished – maths, literature, music, had the ability to pursue a career in any had the ability to pursue a career in any fi eld he wished – maths, literature, music, had the ability to pursue a career in any fi eld he wished – maths, literature, music, had the ability to pursue a career in any fi eld he wished – maths, literature, music, fi eld he wished – maths, literature, music, or computing. But in 1989, six months fi eld he wished – maths, literature, music, fi eld he wished – maths, literature, music,


I knew I could do better but I didn’t.” Ironically, Theo continued to help classmates achieve their best and he still shone academically.

The stress of his parent’s marriage breakdown, a fraught overseas trip, a bad reaction to prescribed medication and growing disinterest in his university studies, tripped a wire. He became delusional, his inner voice more and more intrusive. “I thought I was in a different world, a world were there had been a nuclear war,” he says.

“I guess I was trying to escape reality – my psychiatrist described it as going into a maze – and I didn’t know how to get out. Basically it took going to hospital to come back to the planet. At the time the delusions were very real.” Gradually, Theo learned to take a metaphorical ball of string with him when his grasp on reality began to slip so he could find his way out.

“I was determined to get through it,” Theo recalls. “These days if I become wobbly, I pick up straight away and I mix with the right people and keep away from drugs like marihuana. I take my medication religiously.”

When he was able, Theo began to use poetry to identify, express and partially exorcise the anguish that is revealed in this excerpt from the poem “I?”

giveæme æaæs entenceæwithæt heæwor dæï IÍ æi næi tætoæp roveæt hatæï IÍ æe xistæwhenæt heæn ursesæas k

His best poems, Theo believes, are dedicated to other people, including those he encountered in hospital. “Mental illness is a worthy topic of poetry. I’ve met some very spiritual people in mental hospitals, mainly other patients, with wonderful philosophies who are incredibly human & inspiring.”

Like many people who’ve had severe breakdowns, Theo was overwhelmed by loneliness, isolation and self-doubt, but from this period of intense introspection, he distilled a philosophy very different from that he grew up with – accomplishment was no longer a measure of worth.

“For me the unseen is a lot more important than the things we see around us and by that I mean the wisdom we accumulate and the spiritual lessons that we go through; everything else is just in the background.”

Myæl ifeæs hallæn otæb eæh ollowæð æWhatæb ringsæi tæi ntoæf ocusæIsæh owæt hisæGame Í sæaæc ircusæWhichæon lyæf oolsæd areæf ollow.

Excerptæf romæñTheæPoweræM akesæM eæSt aggerî

Theo keeps the door closed on the bleakest parts of his life. Other, lesser losses he is able to mediate in his poems. “I think of my poetry as similar to war poetry: warring against the shadow. Over the years, I’ve talked with psychiatrists and other people and it’s hard – there are no words that can put it into perspective except when I sit down late at night when I feel passionate and work on a poem and turn those feelings into my poetry. You might not have much left in your life but you can make something useful out of it.”

Pain might have been the stimulus but Theo’s subject matter ranges widely: a tender reflection on his mother’s second marriage to the posturing of modern poetry:

Writeæd ownæaæs entenceæor æt wo.æIncludeæan æi mpressiveæwor dæh ereæor æt here.æPerhapsæi ncludeæt houghtær ipplesæð æRipples,æn otæwave s,æmi ndæyou .

(Afteræal l,æwe æwan tæt oæ relate.Tooæmu ch,æan dæi tæs ticksæi næt heægu t.æMakeæi tæd igestible.æLi keæmi lk.)

Excerptæf romæñAæL eapæInt oæPost modernistæSol utions:æT odayÍ sæPoem î

But it is romance and spirituality where his poetry really blooms. At present Theo has no Dearly Beloved although he’s had intense relationships with a few women and hopes he will again. For now, he celebrates what he does have – the legacy of a first-class education, a large group of friends, his “guardian angel” mother and a deeply felt, slightly unconventional spirituality.

“I was brought up as an Anglican and I enjoyed it and it meant a lot to me. Then when I became interested in runes I discovered a god called Odin, the god of the runes. I chose Odin because he has a personality – he’s not remote and unknowable as gods are. I don’t get into the magic or the Wicca, I’m a Zen Buddhist at heart but I pray to Odin every night. He’s my god, my guide, my mentor and my friend; it’s a personal relationship and a healthy one. My faith is my bedrock and I couldn’t do without it.”

Theo still has “wobbles” as he calls them and episodes of depression but he knows they will pass. There are as well, moments of exhilaration:

Bendæt heæsky ,æb endæ myæ mindæ

Whatæi s,æh asæan dæal waysæs hall?æBendæt heæs ky.æBendæmyæmi nd.

Sparrows fly and jekylls cryæSwinging,æc lingingæs piralæt ime.æStones are ringing out their find:æWhatæi sæh asæan dæal waysæs hall.æ


How many pills

By dr andrew gunnare too many?


“It is an art of no little importance to administer medicines properly: but, it is an art of much greater and more difficult acquisition to know when to suspend or altogether to omit them.” Philippe Pinel (1745-1826)

As a teenage medical student, I struggled to understand the nature of my future trade. The penny finally

dropped in the third or fourth year of my studies: the practice of modern medicine is largely about drugs.

Unfortunately, drugs are dangerous. An estimated one-fifth of all emergency admissions in the elderly are drug-related, and it is thought that 140,000 people are hospitalised in Australia each year from “medication misadventure”.

This is a startling amount of misadventuring – although, after a couple of decades in the game, I have decided that any medicine, herb or complementary medicament that is guaranteed 100 per cent safe is also guaranteed 100 per cent useless. Even placebos create multiple, unpredictable effects on an individual’s body.

Invariably, useful drugs sometimes cause harm. This means that both doctors and patients should realise that a reasonable treatment for a serious condition is not always a reasonable treatment for a mild case. Medication should be safer than the affliction it treats.

Polypharmacy

“The greater number of simples that go unto anie compound medicine, the greater confusion is found herein, because the qualities and operations of verie few of the particulars are thoroughlie knowne.” William Harrison (1534-1593)

Polypharmacy is the use of multiple medications by a patient. Surveys suggest up to one third of very elderly patients take six or more medications. Many people with disabilities are in the same situation. Understanding what needs to be taken, and when, is difficult enough for the doctor let alone the patient.

The computer software I mostly use for patient notes allows 13 current prescriptions to be viewed at one time. The programmers obviously thought this would be sufficient. To see more than this number of medications you need to scroll down within a text box. Disconcertingly, I do lots of scrolling.

Polypharmacy creates more problems than just financial costs and difficulty swallowing mountains of pills. Most notably, there is a high risk of drug interactions and side effects. This risk is said to rise exponentially as the number of drugs taken increases. Many people would be surprised at how little is known about the effect of mixing just two pharmaceuticals – let alone a dozen or more.

Particularly in patients with communication problems, side effects can go unnoticed or get misinterpreted as a

natural deterioration in their condition. Ironically, when side effects are detected, the medical reflex is often to treat these with extra drugs.

Lies, Damned Lies and Statistics

“All who drink of this remedy recover in a short time, except those whom it does not help, who all die. Therefore it is obvious that it fails only in incurable cases.” Galen (c.129-c.216)

The science underlying modern pharmaceuticals gets distorted by commercial considerations. Manufacturers quite naturally seek to present their products favourably, for instance by highlighting relative risk reduction when absolute risk reduction gives a more accurate picture of a drug’s efficacy. If trials suggest a medication will reduce a patient’s risk of stroke over the next 5 years from, say, 4 per cent to 3 per cent then the relative risk reduction is an impressive-sounding 25 per cent (the risk reduces by one fourth) but the absolute risk reduction is a measly 1 per cent (one chance in a hundred).

Most useful of all in assessing a drug’s therapeutic impact are figures known as Number Needed to Treat (NNT) and Number Needed to Harm (NNH). These figures are not widely available and cannot always be calculated from published drug trial data.

“Number needed to treat” is the number of patients who need to receive a treatment for one patient to achieve the desired benefit. For instance, an NNT of 5 means if five patients receive a treatment then one patient benefits. “Number needed to harm” is the number requiring treatment before one patient is harmed.

Low NNTs are good whereas low NNHs are bad. Highly effective treatments, for instance antibiotics for susceptible infections, have excellent NNTs under 2. Preventive measures, for instance drugs to reduce high blood pressure or high cholesterol, often have disappointing NNTs of over 100 in all but the very highest risk groups.

With so many patients on so many drugs, it is worth considering whether every drug they take is actually essential. For instance, a patient on ten drugs with respectable NNTs of 5 would appear to have about one chance in ten million that every drug being taken is of benefit and over one chance in ten that absolutely none of the ten drugs are helpful.

Incidentally, the number needed for regular exercise to prevent heart attacks is probably about 3. In other words, compared with high-tech drugs, exercise is vastly more effective at preventing heart attacks and is almost certainly less harmful. No wonder an apocryphal tsar had an interesting solution when he discovered his most disease-ridden province also had the most doctors. He killed the doctors.


The word retard is a troubling issue for many parents and siblings of a child with Down syndrome and it provokes

a multitude of questions: how to react to the word and what do you do if someone uses it in conversation?

As a writer, I fi nd the word’s historical and cultural usage intriguing but against this is my experience as a mother and my reactions when I hear the word “retard” being used to disparage people considered foolish or socially inept, or those with an intellectual disability.

My reactions vary. When disability advocates moved for a boycott of the fi lm Tropic Th under I decided to see it and while I didn’t think the fi lm worked (unable to sustain the humour or explore the theme satisfactorily) I didn’t fi nd the use of the word retard particularly off ensive. As my children pointed out, the movie was a parody about the self-importance of Hollywood actors, and that’s the way I took it. Perhaps though, I didn’t get it – that’s what the protestors claimed about those who didn’t take issue with the word.

On another occasion however, my cheeks burned red when a mother commented to a small group of us standing around at a soccer game that it was only the retards that did swimming at school on Saturdays. I wanted to ask (ever so sweetly) did she mean children like Fraser whom she know? I didn’t: I was trembling too much.

Her clumsy joke might have been a slanting compliment to the boys we were watching at the time – E-grade players, all – but her tone was totally rejecting; she made clear there was a category of children who were not welcome at the school. Th e word stung; I felt as though I had given birth to a menace. I wanted to lash out but this woman and the other mothers are a constant in my life and will continue to be in the years ahead. But at the same time I could understand where she was coming from and perhaps, had she got the tone right and said it in a way that was funny and inclusive, I too might have laughed.

It isn’t easy to shrug off the painful history of the r word. If Fraser had lived in the second half of the nineteenth century, he would have been referred to as “Mongoloid Idiot”, a classifi cation invented by Dr John Langdon Down

THe r WordBy fiona Place

in his 1866 paper Observations on an Ethnic Classifi cation of Idiots where he stated:

Th e Mongolian type of idiocy occurs in more than ten per cent of the cases which are presented to me. Th ey are always congenital idiots, and never result from accidents after uterine life. Th ey are, for the most part, instances of degeneracy arising from tuberculosis in the parents.

Although Down later abandoned the ethnic classifi cation and indeed did much to advance the lives of people with Down syndrome during his life, the term’s negative connotations remained and for several decades many people continued to believe that the extra chromosome indicated a throwback to an early stage of human development.

Th is conceptualisation of diff erence, this imagining of my son and others like him as substandard, became even more ingrained as the need for an increasingly effi cient and more productive workforce gathered pace. With the introduction of intelligence tests in schools, children like my son were

Josh Perry (centre) with his brother and Scott Baio (right). Josh is the star and producter of 30 or more fi lms and videos including Th e Retarded Policeman and Wunderkammer.


labelled mentally retarded – and/or feeble-minded, idiots, imbeciles or morons – and were increasingly segregated from mainstream society.

This process of systemic removal was said to benefit society as a whole, and for a time there was a widespread belief on both sides of the Atlantic that society could rid itself of what were termed “defectives” by segregating them and making sure they could not reproduce. Those overseeing the process had no doubt that society would be better off without them.

The word stung; I felt as though I had given birth to a menace. I wanted to lash out but this woman and the other mothers are a constant in my life and will continue to be in the years ahead.

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The Nazis subscribed to a similar but more extreme policy and their extermination program targeted the intellectually disabled first, and then the mentally ill, gypsies and Jews.

Today the term “retardation” is still used in many federal and state laws in the United States and some academic journals, and it wasn’t until 1992 that the Association for Retarded Citizens of the United States removed the r word from their name and became Arc, although the Arc websites of some US states still refer to “mental retardation”.

Actor Josh Perry has Down syndrome and is the star of the YouTube hit “The Retarded Policeman”. While the 27 or more video clips may not be everyone’s cup of tea, Josh and Mediocre Films tackle the word head on. Sometimes their attempts to defuse the word’s perjorative power backfires but what is important is that Josh teaches us the need to be open to a range of strategies in managing the r word.

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“Th ere’s already a high level of unmet demand for disability services but everything you read points to that demand increasing with our ageing population. Th e ageing population is going to need more support services but the people needed to work as support workers are ageing too. So it will be even more diffi cult to recruit enough workers to provide those increasing support services.”

“Th e aim of my research is to try and identify what are the factors, the issues really aff ecting those people working at the coalface, so that we can improve our recruitment and retention of staff .”

Mr Cookson has already surveyed over 180 disability support workers and is now conducting detailed interviews with 15 of them over the next six months. A number of common themes are already emerging.

“Th e fi rst theme is the lack of funding, although most people seem resigned to accepting that government attitudes aren’t going to change in this area,” he said.

“But there’s also a real sense of frustration that the opinions of support workers aren’t sought or valued, even though

who sUPPorts the suPPort worKers? Peter Cookson is worried that “much of the good work”

done since the 1970s in deinstitutionalisation and helping people with disability live in the community is at risk of being undone by a shortage of paid disability support workers.

“It is these paid disability support workers who are the backbone of government funded services to people with disabilities living in the community,” Peter said.

“Let’s be honest, an agency offi ce burning to the ground would have less impact on the people we support than the failure of a trusted support worker to arrive on time for a regular activity,” he said.

“And one of the major problems we face in the disability sector is the diffi culty in recruiting and retaining support staff .”

Th e Flinders University PhD candidate’s experience living with and supporting older twin brothers with intellectual disabilities spurred him to dedicate much of his working life to supporting others living with disability.

He has seen, up close, the tireless eff orts of disability support workers. And he has witnessed the increasing pressure on these workers and the high turnover rates in the sector.

“Over the years I’ve been worried by the lack of services available to people with disability, and many of those services depend on the commitment of people with an interest and a willingness to work as support workers,” Peter said.

“But I can think of no other job that has the responsibilities and requirements that go with supporting someone with a disability that pays around $16 an hour and only $6.58 an hour overnight.

“No one does support work because of the money. And yet some people stay working in the fi eld for long periods. Th ey do it because they are committed in some way to the work.”

Just what that commitment to the work is, and where it comes from, is the subject of his doctoral research project.

Peter Cookson

We’re expecting more and more of support workers. We’re expecting them to be able to deal with a person with challenging behaviours.


some have had experience over decades and in some cases at a managerial level. Th ere seems to be a feeling that anybody can do this work.

“Another recurring theme is that disability support workers are crying out for training and professional development. Th e training most support workers receive are the basic fundamentals repeated over and over: occupational health and safety, fi rst aid and manual handling – rather than the specialised skills like ‘behaviour modifi cation’ they increasingly need.”

It appears that, to some extent, the success of deinstitutionalisation itself may have contributed to the underestimation of the skills needed to work with people with disability.

“Back in the 70s and early 80s, the people moving out into community living were people with mild disabilities. But now a lot of the people moving out into community settings are people with quite severe disabilities,” Peter said.

“We’re expecting more and more of support workers. We’re expecting them to be able to deal with a person with challenging behaviours. We’re expecting them to be able to deal with a range of medications. We’re expecting them to promote ‘active support’, the actual involvement of the person you’re supporting in daily activities.

“But if you’ve never had any training, in these formal skills, how do you deal with these issues?”

Other themes have cropped up too: the absence of forums to discuss issues, to express their thoughts or seek information; poor wages and work conditions; a wide range of management and supervision issues; and a lack of community acceptance and understanding of disability.

South Australia’s Disability and Rehabilitation Professionals’ Association (dArpa), of which Peter Cookson is a committee member, is already moving to give support workers forums in which to have a say, and to invite membership of anyone who works in the disability fi eld.

“In the past, associations have tended to focus on qualifi cations. Disability support workers therefore haven’t really been part of that movement,” he said.

Plans are also being developed to establish a national Disability Professionals Association (DPA) to further broaden the range of forums and support available to workers in the fi eld. Th at need for support is real.

“Having adequate support for a person with a disability is also a problem for those people around that person – for parents, for siblings, for friends, for neighbours,” Peter said.

“One CEO I spoke to is predicting that by 2015 the shortage of disability support workers and funding would see a return to cluster homes or group homes with 15, 20 or 25 people.

“In other words, we’re not letting people live in the community; we’re actually establishing a whole series of small institutions dotted right through the community.”

Th ings might not return to the days when, as Peter recalls, wards had fences with barbed wire on top and one staff member supervising 42 adolescents.

But seeing how his intellectually-disabled brothers were able to live at home with the family into their 50s and care for their frail elderly father, Peter said a move away from community living would be a serious retrograde step.

“You’re not aiming too high just expecting people with disabilities to have a life like anyone else. OK, they may not do things that you and I might aim to do but within their own sense of experiences and satisfactions, they do fi ne and they can often support other people.

“All it takes is a bit of support.”

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Most of us are familiar with the pleasure of soaking in a nice warm bath to ease our troubles, or soothing our

aching muscles. It isn’t surprising therefore that therapy which includes immersion and exercising in a warm pool – known as hydrotherapy - is a very successful and popular method of treatment and rehabilitation for a wide range of disabilities and ailments.

The science behind the healing power of hydrotherapy is actually quite simple. It lies in the combination of warmth, buoyancy and gentle resistance provided by the water. Kept at 34 degrees, the warmth of the water helps reduce pain and muscle spasm. Hydrotherapy also promotes relaxation and improves general fitness and well-being.

Used with physiotherapy, hydrotherapy is valuable in treating an extensive assortment of musculoskeletal and neurological disorders and people have had their lives turned around by this therapy.

Alison Braxton* of Brisbane, for example, is a 69-year-old woman who has Parkinson’s disease. Parkinson’s can produce a range of symptoms including tremors, rigidity, severe pain and an unsteady gait including a stooped stance with reduced arm swing and small, shuffling steps. For Alison it means she has rigidity, muscle pain and poor balance. In 2008 she also had to have a full knee replacement.

The knee replacement didn’t go well and although Alison was given a home-based exercise program she found it difficult to accomplish because of her Parkinson’s.

By aileen wallace

Just five weeks after the operation her knee was nearly immobile, and she had to go back into hospital for a manipulation. When she came out she had 65 degrees flexion. However this time, instead of going home with a list of exercises, she was lucky enough to be referred to a physiotherapist at Wesley Mission Brisbane Sinnamon Village Hydrotherapy pool.

When Alison first met her physiotherapist at the pool, she said the pain was 10 out of 10 on the pain scale. There was a lot of swelling around her knee and it was quite warm. She couldn’t sit comfortably in a chair and had to walk with a walking frame. The pain was worse at night so Alison was also suffering from sleep deprivation.

Her physiotherapist started her with weekly one-on-one sessions in the hydrotherapy pool. These 30-minute sessions were personalised for Alison’s needs, and included sideways, backwards and forward walking. Working with her physiotherapist Alison slowly built the exercises and number of repetitions up, eventually working not only on the knee replacement but also on some of the problems caused by Parkinson’s such as loss of flexibility and increasing rigidity. Within the pool Alison got to practise

the healing Power of hydrotheraPy

Life is almost back to normal now for Alison. Her knee flexion is just beyond 95 degrees which means she has more or less full movement


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sitting on a seat, walking with long strides, swinging her arms and standing tall while looking ahead - all things that were extremely difficult for her to practice on land. Her pain started to ease, her flexibility increased and the pressure of the water also helped reduce the swelling in her knee. Her progression and recovery were considerable.

What was more, Alison enjoyed the therapy so much she started coming to the pool herself once or twice a week to work on an additional personalised program. She has also now joined a regular group session. All of these are considerable achievements, not only because of her knee replacement, but also for someone who has been unable to participate in any exercise programs for years because of Parkinson’s.

Life is almost back to normal now for Alison. Her knee flexion is just beyond 95 degrees which means she has more or less full movement, and she sings the praises of the Wesley Mission Brisbane Sinnamon Village hydrotherapy pool and programs.

“I am independent now,” says Alison. “I can drive myself around and go shopping and have become much more flexible. The hydrotherapy sessions keep me focussed. I not only love the exercises but also the social aspect of hydrotherapy, and it helps me keep things in perspective. It reminds me that although I have had Parkinson’s for probably 25 years, I am still mobile.”

“This type of hydrotherapy is the best holistic treatment available for a range of conditions,” says Wesley Mission Brisbane Hydrotherapy Centre manager Barbara Leadbetter. “It assists many different people and patients, allowing them to improve their quality of life. The warmth of the water eases their pain and the bodily support the water gives allows even the most fragile of people the opportunity of purposeful movement.”

Arriving for her hydrotherapy session, Alison drives in then walks, unaided, to the pool. “It has changed my life,” she says. “It encourages me to keep going.”

*This name has been changed.


Bedford Celebrates Successes State-wide

Bedford – proud sponsor of Link Disability Magazine

Bedford Heart & Soul winners Ken Nottage and Mark Podger with Max Dyason - Bedford Chief Executive and Dave Gibbons - Executive Director, Vehicle Operations, Holden

Bedford celebrated the successes of more South Australians than ever at its Achievement Awards this year following an expansion phase which has seen the organisation grow to support more than 1,800 people with a disability across the state.

The not-for-profit organisation recognised the significant contribution its employees and members make to the local community with regional events held in Port Lincoln, Wallaroo and Mount Gambier during May and June, with the grand finale at the Adelaide Convention Centre on June 16.

Bedford Chief Executive Max Dyason said the 42-year-old Awards Day tradition was stronger than ever this year, with the inaugural regional celebrations.

“We’re now truly a state-wide organisation - celebrating the achievements of our employees and members from Port Pirie, Kadina, Wallaroo, Millicent, Mount Gambier and Port Lincoln, as well as from across Adelaide” Mr Dyason said.

“It is always an extremely proud day where our employees can be recognised in front of their peers and families, so it was important for us to ensure this tradition could live on at our regional sites so people in country South Australia could also be honoured in front of those who mean the most to the individuals.”

Bedford hosted its employees from Bedford Northern Region in Port Pirie, Kadina and Wallaroo, Compass in Port Lincoln and Gambier Contracts in Mount Gambier at last year’s Adelaide event. This year, Millicent Work Option Centre (MWOC) joined the celebrations following its merge with Bedford earlier this year.

“The fact that we are now able to create this proud opportunity for more South Australians across the state is hugely significant and we’re looking forward to the Achievement Awards celebrations thriving in the years to come,” Mr Dyason said.

Awards presented at this year’s events included:

• Heart and Soul Perpetual Award for outstanding personal achievement

• Encouragement Award for Bedford “rookies”

• Achievement Awards for service in Bedford business areas

• Certificate of Achievement in open employment

Mr Dyason said he was honoured to be a part of the momentous event every year.

“These events mark a special time in Bedford’s history, a time when we are able to provide more people with the opportunities to achieve their dreams,” Mr Dyason said.

Bedford background: Visit www.bedfordgroup.com.au/news_and_info/media_releases

Media Information: Samantha Munt, Michels Warren: (08) 8267 6888 or 0408 715 585

Interviews: Max Dyason, Chief Executive – Bedford (08) 8275 0276 or 0411 671 365

Bedford Media Contact: Sam Abbott, General Manager, Marketing & Fundraising: (08) 8275 0230 or 0412 224 095


If your sleep habits are not what they could be, chances are, neither are your arteries.

Scientists have found that the same molecule that makes us want to go to sleep also has a natural infl ammatory eff ect in the body.

Called adenosine, the molecule works with a variety of hormones to carry signals that infl uence both the desire to sleep as well as energy production within cells.

When we ignore the call to sleep, even for one night, researchers have found that the signals trigger events that can damage blood vessels, organs, even our immune systems to the point that normally protective cells turn against us, as they do with rheumatoid arthritis.

Earlier this year, researchers at Case Western Reserve University in Cleveland took an in-depth look at some of the mechanisms of cellular damage related to short sleep duration.

As reported in the journal Sleep, they measured several proteins used by the body as fi rst responders to injury and infection in a group of more than 600 volunteers already part of a study looking at whether obstructive sleep apnea may be genetically inherited.

Sleep duration was measured two ways – a self-assessment of how many hours a person usually sleeps each night, and an overnight sleep-monitoring test. Th e typical self-reported night’s sleep was 7.6 hours, while the monitored test found a mean sleep duration of 6.2 hours.

Th ose with longer sleep durations, by either measure, were younger. But those who reported sleeping longer tended to have higher blood levels of two infl ammatory regulators, C-reaction protein and interleukin 6, while those with

shorter sleep time according to the monitor test were more likely to have higher levels of another infl ammatory factor.

But those with short sleep duration as measured by the overnight test were more likely to have diabetes, hypertension and obstructive sleep apnoea.

Last year, scientists reported that levels of another infl ammation-triggering chemical, nuclear factor B, shot up in a group of female test subjects kept awake until 3 am – about four hours past their regular bedtime. Men in the study didn’t show the same eff ect, but researchers said they doubt men are unaff ected by lost sleep. Th ey suspect that men either take longer to show the eff ects of the chemical, or their levels were able to recover more quickly.

Scientists also know that there’s a close connection between sleep habits and obesity. Numerous studies have demonstrated that hunger hormones soar when we sleep less. It’s no accident that we’re inclined to pig out when we’re short on sleep.

Dozens of studies, both in the US and around the world, have found a link between fewer hours of sleep and increased risk of obesity, in both adults and children.

Yet the connections between sleep and appetite are so intertwined that some researchers say there’s some doubt about whether worse sleep habits bring on obesity or the other way around.

It’s also been shown that caff eine, chocolate and some proteins found in pork, seafood and red meat can block the sedating eff ects of that multi-purpose molecule, adenosine, setting up a nasty cycle of infl ammatory damage and metabolic imbalance.

the imPortanCe

oF A SoUnd nIgHT’S SLeeP


A high proportion of Australians – one in fi ve – experience major depression in their lives. Other statistics on

depression however, are less well known. Of the people on antidepressants, only 30 – 40 per cent improve totally or signifi cantly. About 20 per cent have no improvement after two years of treatment, and at least 10 – 15 per cent do not respond to any medication. Th is last category is known as Treatment Resistant Depression (TRD).

TRD is associated with increased disability, higher health-care costs, higher unemployment and income support. But even more importantly, the suff ering and risk of suicide is very great and patients sometimes develop drug and alcohol problems as well; the health and well-being of spouses and children is aff ected, often dramatically. Development of eff ective and safe treatments for individuals with TRD is therefore of considerable importance.

Electroconvulsive Th erapy, or ECT, is currently the most common and eff ective treatment for TRD and is used in most psychiatric facilities around Australia. However, ECT has major side-eff ects, notably memory loss which patients fi nd highly distressing. As a result, many patients refuse to have ECT and there is anecdotal evidence that many people who’ve had ECT and improved, do not come back for follow-up treatment when their depression reoccurs because of the side-eff ects and other concerns.

Because of ECT’s limitations, a vast amount of research into alternative brain stimulation techniques has been conducted in the last decade, and the Alfred Psychiatry Research Centre in Melbourne is at the forefront of these studies. Th e focus of our eff ort is Transcranial Magnetic Stimulation (TMS) – a procedure that involves an electrical current passing through a small coil placed close to the scalp to specifi c areas of the brain. Th e current induces a magnetic fi eld, which passes into the brain and stimulates

electrical activity in the nerves below. TMS can be applied in diff erent ways to either increase or decrease brain activity. Unlike ECT it does not induce seizures.

It is not clear exactly how TMS works to relieve depression, although one theory is that repeated stimulation alters the sensitivity of nerve cells in the front regions of the brain and alters their level of activity. In general, the majority of research over the last ten years has shown that TMS is more eff ective than a placebo, although not all studies have shown a clearly positive eff ect. Th is is not surprising given that many of these studies are quite small and most include patients who have failed to respond to many other treatments.

In 2004 a large scale international trial of the effi cacy and safety of TMS for treating depression began, and it found TMS was eff ective, safe, and tolerable for acutely depressed patients who had not responded to an antidepressant medication. In October 2008, TMS was approved by the US Food & Drug Administration but has yet to be approved for clinical use in Australia.

Over the last nine years that we have conducted clinical trials in TMS and depression, around 30-50 per cent of patients who failed to respond to other treatments have improved with a course of TMS, and a smaller percentage has had modest reduction in symptoms.

Samantha (not her real name) underwent TMS for depression at the Alfred Psychiatry Research Centre in early 2009, and had an excellent response: “….the dark cloud that used to hover over me, has gone. My thoughts aren’t rattling, the dark chatter has gone. I’m feeling so good, energised, productive. I feel greater strength, like I can cope with the world, instead of feeling I couldn’t cope. I feel normal. In combination with the other, healthy things I’m doing, the

STImULATIng PoSSIBILITIeSBy dr Kate hoy and Professor Paul fitZgerald

alternative Brain stimUlation treatment for dePression


“When it comes to disability, particularly severe disability and particularly when there are challenging behaviours, it’s the isolation that totally fragments the family and causes so much distress,” she said. “Unless you walk in the parents’ footsteps, you just don’t have any idea what they are going through.”

Mary Lou has emerged as one of Australia’s leading advocates for disability carers, and stood as a Senate candidate at the last election for Carers Alliance, the political party set up in 2007 to provide a voice to unpaid family carers and people with disabilities.

It’s a public role she never foresaw for herself. She was running her own legal support business in her early 20s and imagined she would be able to return to work when her children went to school.

Despite her personal challenges, including the question mark that hangs over Nicholas’s future once he fi nishes at Kingsdene, Mary Lou remains committed to her public campaign to change attitudes and to improve conditions for other carers.

She has also managed to maintain her sense of humour (or “black humour”, as she calls it), relating how a new puppy, not Nicholas, recently reduced a pair of her glasses to a mangled mess.

“I took the lot up to the local spectacle maker who’s looked after the needs of our family for years and he said ‘Oh my God!’ and I quickly replied, ‘No, it’s actually my dog!’

from page 9

Faint HearteDno Job For tHe

TMS has done this”. She describes the physical feeling of TMS as “like an annoying tap on the head, like a headache wanting to start, a slight cramping eff ect.”

During our clinical trials TMS is administered fi ve times a week (Monday to Friday), and usually takes between 20 and 30 mins. Th e patient is seated in a comfortable chair and is alert and aware of what is happening at all times. After the session they are able to leave the room within a few minutes and can engage in their usual activities almost straight away.

We have also investigated TMS as a treatment for other psychiatric disorders, including bipolar depression and

schizophrenia. Recently we embarked on a three year investigation of TMS for treating depression in people with acquired brain injuries – approximately 25 to 60 per cent of patients experience depression after head injuries. Advances in brain stimulation techniques in psychiatry are occurring rapidly, and is driven by the need to develop safe and eff ective brain stimulation treatments for mental illness, particularly for those not helped by other treatments.

To obtain more information or to participate in clinical research trials at the Alfred Psychiatry Research Centre in Melbourne contact (03) 9076 6595.

Because of ECT’s limitations, a vast amount of research into alternative brain stimulation techniques has been conducted in the last decade, and the Alfred Psychiatry Research Centre in Melbourne is at the forefront of these studies.


START PLANNING FOR YOUR FUTURE AT FLINDERSThere has never been a better time to study at Flinders University. Options in disability and community rehabilitation studies include:

• Bachelor of Behavioural Science (Psychology) - specialising in Disability Studies

• Bachelor of Disability and Community Rehabilitation

• Bachelor of Special Education (Graduate entry)

• Graduate Certifi cate in Disability Studies

• Master of Disability Studies

• Master of Teaching (Special Education)

• PhD in Disability Studies

To discuss your study options contact Admissions/Prospective Students Offi ce

Phone 1300 657 671Text us on 0416 905 366Email admissions@fl inders.edu.auwww.fl inders.edu.au

At Flinders we strongly support equal opportunity and inclusive practice. We have a number of schemes aimed at this including:

Up the Hill Project – a program facilitating the participation of people with intellectual disabilities in the social and educational life of Flinders University.

Disability Advisory and Support Service – a program funded by Disability SA through which Flinders offers functional living skills and behavioural support to people with an intellectual disability.

For more information about these programs contact the Department of Disability Studies at Flinders University on 8201 3745.

CRICOS Provider No. 00114A

August 2009 — Vol 18/3 link magazine 41August 2009 — Vol 18/3 link magazine 41

Australian pensioners have been doing it tough for some time: the stories told at the pension review last year

revealed that for individuals and families living on fi xed, low incomes for any length of time, the current rates were barely enough to meet basic needs.

Another frequently mentioned complaint was that the system is far too complicated and many potential pensioners have diffi culty working out whether or not they are eligible.

Following pressure from pensioner advocacy groups, in May 2008 the government commissioned Dr Jeff Harmer to review payments and explore ways of reducing the complexity of the system through research, analysis and national consultations. He established a Reference Committee to advise on areas of need and possible reforms.

Briefl y, the key reforms announced by the Federal Government include:

• Th e existing single pension rate is not adequate and does not take full account of costs for those wholly reliant on the pension.

• Compared to pensions for couples, the single pension rate is too low and should be about 64 to 67 per cent of the couples’ rate.

• Existing supplements and allowances could be integrated into either a pension supplement or the base rate.

• Pension payments should be tied to changes in pensioners’ cost of living.

• Pension increases need to target those with little or no private means.

Th e changes provide increased weekly payments to singles and couples on aged and disability pensions and those receiving Carers Benefi t. (Pensioners will receive further information from Centrelink.)

Various supplementary payments such as the utilities allowance will be rolled into a single, increased payment and will be delivered in a more fl exible way so people can meet quarterly bills more easily.

Instead of the Carers Bonus being a discretionary payment that the Government works out each Budget, from this year on the Bonus will be a permanent part of the Carers Benefi t.

A Pensioner and Benefi ciary Living Cost Index will apply from 20 September 2009 to gauge when base pension rates are higher than the Consumer Price Index. Th e CPI however, will still be used to decide eligibility thresholds. New private income tests will be applied to people receiving part pensions.

Th e increases will be in bank accounts from 20 September 2009. To make sure of your entitlements, contact your Federal Member of Parliament or go to http://www.fahcsia.gov.au/sa/seniors/progserv/PensionReview/Pages/default.aspx

What did the Government leave out?

No progress was made into looking at the extra costs involved in living with a disability, although the subject has been researched for years. Medicines, treatments (including alternative care), dietary needs, equipment, transport etc are non-negotiable additional expenses and low incomes have a major impact on people with disability participating in the community. Pressure will need to be kept on the government to recognise that everyone benefi ts when people with disability are truly part of community life.

A disability insurance scheme was mooted by disability advocates to secure the fi nancial future of people either born with or with an acquired disability. Th e scheme is gathering momentum as diverse advocacy groups across the country become more informed. But for now we will have to wait while the government goes through the usual lengthy process of working out its feasibility.

Th e work of a disability advocate is never done!

Dr Lorna Hallahan, lecturers at Flinders University and is Chair of the SA Ministerial Disability Advisory Council, Deputy Chair of the National People with Disability and Carers Council and was a member of the Harmer Pension Review Reference Committee.

here’s a few dollars sunshine BUt don’t sPend it all at onCe!By lorna hallahan


Despite innumerable reviews, one problem remains intractable: the less than adequate aids and equipment provided by agencies around Australia. Sue Egan though, has a solution. “Instead of having eight different state and territory agencies, we recommended that we have just one, which will also be cheaper to administer.” Under the proposal, each state and territory would adhere to the same criteria.

Ms Egan applauds the Rudd Government’s constructive approach to disability and cites its emphasis on social inclusion as crucial to the future of people with disability. “Although the Howard Government had a Common Disability Strategy, it didn’t seem to work much past the rhetoric. We now have a Transport Standard and an Education Standard and it looks like there will be a new Access to Premises Standard, which is vital.”

Over the 14 years she had been with PDA, Sue has noticed greater recognition of the cost of a disability. “Apart from usual living costs, the average person with a disability has to find money for medication, medical expenses, transport, equipment and education.”

“There’s also more recognition these days that people with disabilities are individuals in their own right. We all need to be included in society in order to be equal instead of being segregated into special schools etc.”

And Ms Egan says she would like to see the federal government switch its focus from carers to individuals with disability. “Don’t get me wrong, I think carers should be recognised but there is too much emphasis on those who provide for them rather than on helping those with disability organise and manage their lives.

“Many people with disabilities don’t have a support person and if the government focused on the individual and met some of their essential needs then people with disability would be far more successful in some of their endeavours in life, such as employment, education and training.”

The name of one of Australia’s national peak disability organisations was changed last year to put the focus

where it belongs – on the people it represents.

Formerly known as the Physical Disability Council, the change to Physical Disability Australia shifts the focus from the board to the people it represents, says CEO Sue Egan. “It also gives the public a better idea of what we do.”

Sue should know. A wheelchair user since an accident in 1981, she and three others started the organisation 14 years ago. “It was formed by people with a physical disability for people with a physical disability,” she says. “At the time there was an organisation for the blind and for the intellectually disabled but nothing for the physically disabled,” she says.

PDA has 2500 members around Australia and is growing. Ms Egan says the organisation does not deal with individuals but rather acts as a conduit between government and its members.

By Kate nash

new name for PeaK Physical disaBility organisation

“For example, we represented our members at discussions about the National Disability Strategy (NDS),” she says. “We also distribute information from the government about things like changes in the pension. While we are funded by the federal government – through the Department of Families and Housing, Community Services and Indigenous Affairs – we try to be as independent as we can.”

There’s also more recognition these days that people with disabilities are individuals in their own right. Sue Egan


Do you find taking a bath difficult?Rediscover the simple pleasure of a hot bath with a bath lift from Active Mobility Systems

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For many people taking a bath is one of life’s little pleasures. Having time out to take a bath in the evening can give you a much needed opportunity to relax and unwind from the stresses of the day.

As well as improving your state of mind, a warm bath is generally considered to have many health benefi ts too. Relaxing aching muscles, taking the weight off sore joints, soothing skin complaints, improving circulation and easing pain associated with conditions such as arthritis are just a few of the reported physical advantages.

However, for many people the prospect of taking a bath conjures up a vastly different set of emotions. If you have mobility diffi culties due to physical disability the thought of taking a bath may fi ll you with dread. The high step in, the challenge of getting out and the wet slippery surfaces can all make bathing a dangerous and undignifi ed experience. Many people require assistance from a carer, and plenty of others abandon baths altogether resorting to only taking showers.

If this scenario is similar to your experience of bathing it’s time you looked for a suitable solution.

Active Mobility Systems is a specialist in conquering people’s bathing diffi culties through simple, affordable solutions. They have two popular bath lifts to choose from to alleviate the strain of getting into and out of the bath; the Archimedes and the Bathing Cushion.

With a fi xed-position backrest the Archimedes will lower and raise you into and out of the bath in a fully supported seated position. It’s a great one-size-fi ts-all solution suitable for virtually every physical condition and bathroom design.

For those who have reasonable upper body stability the Bathing Cushion will lower and raise you into and out of the bath, with the added luxury of being able to lie back and stretch right out at the bottom of the bath. Fully infl atable, the Bathing Cushion is defl ated slowly at the touch of a button to lower you down into the bath, where you can then choose to leave some air in the back rest as a comfortable support, or release all the air for a completely natural bath.

Both options are battery powered and simple to use. They require no fi xtures, fi ttings or alterations to your bathroom and can be set up in seconds. They are completely portable for those who like to travel, and are easy to remove from the bath leaving it clear for use by a partner or family member.

If you want to rediscover the simple pleasure of a hot bath arrange a free no-obligation demonstration from Active Mobility Systems by calling 1800 LIFTER (543 837).

Active Mobility Systems could have you enjoying safe bathing again quicker than you can fi nd the bubble bath! Call 1800 LIFTER (543 837) today for more information.

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what’s on

Thursday 3 September

Official Opening of Disability Awareness Week

Movie Night, Deckchair Cinema, Darwin 6.30 pm - 10.00 pm - Free Entry

Contact: Nancy McCann (08) 8930 0645 [email protected]

Friday 4 September

Movie Afternoon, CMAX Cinema, Palmerston Session time to be advised - Free Entry

Contact: Natalie Jacobson (08) 8935 9972 [email protected]

Saturday 5 September

Sailability, Darwin Sailing Club, Fannie Bay 10.00am to 12.00pm – Free Entry

Contact: Keoh Goodall (08) 8981 3686 [email protected]

Sunday 6 September

Family Fun Day, Palmerston Recreation Centre, Palmerston 10.00am to 1.00pm – Free Entry

Contact: Natalie Jacobson (08) 8935 9972 [email protected]

Monday 7 September

Morning Tea, Carers NT, Unit 4 & 5, 1 Caryota Crt, Coconut Grove 9.30am to 10.30am – Free Entry

Contact: Marie Stillwell (08) 8948 4877 [email protected]

Tuesday 8 September

Open Day at Northern Rehabilitation Network Building 15, Royal Darwin Hospital 11.00am to 2.00pm - Free Entry

Contact: Denys Spencer (08) 89228866 [email protected]

Wednesday 9 September

Happiness & Well Being Market, Raintree Park, Darwin 10.00am to 2.00pm – Free Entry



Open Day at The Patch corner Vanderlin and Leanyer Drive, Leanyer 10.00am to 12.00pm – Free Entry



Celebration Breakfast Crocosaurus Cove, Mitchell Street, Darwin 7.00am to 9.30am Entry Fee: $40.00 (includes cooked breakfast)

Contact: Liz Reid (08) 8946 6288 [email protected]

national

Housing in the new era: building the connections 6th National Housing Conference 24-27 November 2009 Melbourne Convention and Exhibition Centre Enquiries: (03) 9682 0500 [email protected]

Hearing Awareness Week23 – 29 August 2009

Brain Injury Awareness Week 14-20 Sept 2009

NDS Employment Forum Shining through—creating sustainable employment in a turbulent world incorporating the Workability

International Conference

7 - 9 September

Sydney Hilton

Enquiries: Sarah Maguire

(02) 6283 3200

Aged & Community Services Australia Conference 13 - 16 September

Perth Convention Exhibition Centre

Enquiries (08) 9389 1488

[email protected]

4th World Congress Mental Health and Deafness 200927 - 30 October

Brisbane Convention and

Exhibition Centre

Enquiries: (07) 3892 8500

18th National Conference on Incontinence4 - 7 November Adelaide Convention Centre Enquiries: (03) 9347 2522

44th ASSID Conference4 -6 November Wrest Point Convention Centre, Hobart details: www.leishman-associates.com.au/44assid2009

internationalAsia Pacific Autism Conference 20 - 22 August Sydney Convention and Exhibition Centre Enquiries: (02) 8251 0045 [email protected]

disaBility awareness weeK in darwin 3–10 sePtemBer 2009


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Study tests if oestrogen can protect brain after injuryA single dose of the female hormone oestrogen could protect the brain after a traumatic injury, but researchers won’t know for sure until they test it on humans.

That’s what they’re doing as part of a clinical trial at Parkland Memorial Hospital in Dallas. The participants won’t know whether they get oestrogen or a placebo. And they won’t be able to give their OK before receiving it.

The hormone must be given within two hours of a traumatic brain injury, making it virtually impossible to get informed consent, said Dr James Simpkins, chair of pharmacology and neuroscience at the University of North Texas Health Science Centre in Fort Worth. He is working with a researcher from the University of Texas Southwestern Medical Centre at Dallas to translate animal studies to humans.

“If we wait until we can get consent from the person when he recovers consciousness, it will be too late,” Simpkins said. “It is crystal-clear that if one waits six hours, 10 hours or more, the ability to protect the brain goes down dramatically.”

The groundbreaking research will focus on whether oestrogen and anti-inflammatory drugs can prevent secondary injuries and improve outcomes in humans. It will involve 50 men aged 18 to 50 who have suffered a brain injury or severe blood loss, most likely after a car, motorcycle or boating accident.

The study will target men because 70 per cent of patients with brain injury or blood loss are young males. Studies have suggested young women, who have high amounts of oestrogen, are more resistant to brain trauma than men or older women.

The rapid administration of oestrogen holds promise as a way to reduce neurological deficits and increase survival after a devastating injury, said Dr Jane Wigginton, assistant professor of emergency medicine at UT Southwestern Medical Centre.

“A one-time dose of oestrogen is considered safe and has been widely studied in animals and humans for over 60 years,” Wigginton said. It’s commonly used in patients who have uterine bleeding and prostate cancer.

“I’ve talked with experts around the world, and nobody can imagine that one dose of this is going to do any harm,” Wigginton said.

This trial is based on years of animal research from the UNT Health Science Centre. In animal studies, oestrogen has been shown to increase brain cell survival by up to 65 per cent, Simpkins said. In 1994, he discovered oestrogen can protect nerve cells and reduce neurological damage in rats.

The FDA usually requires informed consent but makes exceptions for emergencies. Before the study, researchers must get community consent and inform the public about how they can opt out of the study. In this case, bracelets will identify those who don’t want to participate.

“Traumatic head injuries are so devastating and so often affect young adults that when people understand the risks of dying versus trying a drug that has been shown to be safe, they’re very supportive of the testing,” Wigginton said.

About 50,000 people, or 22 per cent of those who sustain a traumatic brain injury, die each year in the United States, according to the Centres for Disease Control and Prevention. More than 80,000 people are left disabled.

The study is expected to last six to eight months, and results will be available to the public. After that, a much larger study, involving hospitals nationwide, is planned.

“Doing the study without getting consent could create problems later, but if it helps save lives, people will see it as a small price to pay,” Breier said.

“The hope is the study will help oestrogen become the standard of care for brain injuries worldwide,” Simpkins said.

“The vast majority of people who present at ERs with brain trauma either die or have life-altering neurological deficits,” he said. “We believe we can do better than that.” AAP


A 15 year follow-up study of adolescent inpatients in Australian mental health services, reveals that family

and friends are critically important during and after periods of hospitalisation or crisis.

Study leader, Dr Patricia McNamara, is a senior lecturer in social policy at La Trobe University, and specialises in adolescent and family mental health and welfare.

She says the study showed that once young people return to the community, welfare and mental health systems are often inadequate & slow to respond to their need for help which, as media reports sadly testify, sometimes leads to tragedy.

Her work began in response to the Victorian Government’s closure of residential and community-based facilities for adolescents, part of the de-institutionalisation of mental health services during the 1990s. She was then a social worker responsible for finding alternative accommodation for young residents.

“At that time there had never been a longitudinal study of adolescent treatment in the Australian mental health sector,” Dr McNamara says. “It is still the only qualitative post-discharge follow-up of adolescent residential treatment in the international literature.”

Conducted in three stages, her research told the stories of young lives from their first contact with mental health services. Initially it involved eight young people at admission, discharge and six months post-discharge. Seven years later she reviewed six of the original group and their parents, and followed up with four of them after 15 years.

Dr McNamara says the four young people studied over the full period had been “heroic” in the way they coped with their illness. All of them forged productive lives. Three had remained in long-term employment, two had completed tertiary studies, two were in long-term relationships and two were mothers.

“It seems the support of their kith and kin enabled them to have such productive lives. When young people are at their most vulnerable, if their family is able to support them with hospitalisation or getting a change of medication, they can weather the storm so much better than if they are forced to rely on community support.”

Chasms in care

Despite finding some useful programs, Dr McNamara says she was disturbed by “chasms” in community-based services. “It seems an indictment of our society that we cannot help young people who have shown enormous courage in coping with their mental illness. Professionals in health, mental health and welfare especially need to be vigilant.

“We need to be flexible and responsive and maintain an active monitoring role so we can pre-empt major struggles such as suicidal thoughts and self harm.”

Dr McNamara’s recommendations include more intensive pre and post-discharge social and emotional support for young people with serious mental illness and for their families, and greater access to crisis care and ongoing psychotherapeutic services, particularly in rural Australia.

La Trobe University

faMily & friends crucial to young PeoPle with Mental illnessYoung people with mental illness should not need to resort to extreme behaviour such as violence or suicide attempts before receiving the help they need.

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To fi nd out how to make a call, go to www.relayservice.com.au

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Telstra’s Disability Equipment ProgramTelstra want to make communication as easy as possible for all of our customers. That’s why if you are elderly or have a disability, we offer a range of solutions to help, at no extra cost to a standard rental phone. So contact us to receive a brochure, or you can access it online at www.telstra.com.au/disability/catalogue

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Telstra’s Disability Equipment ProgramTelstra want to make communication as easy as possible for all of our customers. That’s why if you are elderly or have a disability, we offer a range of solutions to help, at no extra cost to a standard rental phone. So contact us to receive a brochure, or you can access it online at www.telstra.com.au/disability/catalogue

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