005 - Bridge Magazine - Brothers and Sisters (2011)

VOL-5

In this issue:

BROTHERS & SISTERS Tracks in the shifting sands Yarning about brains Surviving in remote communities 1 / BRIDGE MAGAZINE

Peter’s story BRIDGE VOLUME 4 - December 2011 ISSN 1448-9856 General Editor: Project Manager: Contributing editors:

The importance of reconnecting

Barry Morris Glen Farlow Clare Humphries Anna Petrou Gerowyn Hanson

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SYNAPSE PO Box 3356 South Brisbane BC 4101 P: 61 7 3137 7400 F: 61 7 3137 7452 E: biaq@braininjury.org.au W: www.braininjury.org.au Bridge is produced by Synapse (formerly Brain Injury Association of Queensland). Published quarterly, it welcomes contributions and news items, especially from members. Advertising rates are available on request. Synapse is dedicated to improving the quality of life of people living with and affected by Acquired Brain Injury, or people whose behaviour challenges our understanding.

VISUAL DIFFICULTIES: For those with visual problems, go to www.synapse.org.au and view the free online version which can be expanded on screen.

DISCLAIMER: While all care has been taken to ensure information is accurate, all information in this publication is only intended as a guide, and proper medical or professional support and information should be sought. The Association will not be held responsible for any injuries or damages that arise from following the information provided. Material within does not necessarily reflect the policies of Synapse or the staff and Board of Management. References to other organisations and services do not imply an endorsement or guarantee by Synapse.

Letting go Dealing with bitterness after a brain injury

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Yarning about brain injury

Supported by financial assistance from

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INDEX 03 05 07 09 10 11 13 15 17 19 20 21 23 24 25 27 29 30 1 / BRIDGE MAGAZINE

Tracks in the shifting sands Understanding family issues Understanding the nervous system Peter’s story Managing traumatic stress symptoms Letting go Strength through culture Big things afoot Down the slippery slope Advocacy & impaired capacity Brain injury strategies work!

News in numbers Yarning about brains Handling stress Pros & cons of returning to work BIN looking for a change?

Building products & housing equipment Surviving in remote communities

More support and knowledge in Indigenous communities

Connecting with cultural heritage ABIOS looks into common family problems Get to know your brain and nerves better The importance of reconnecting Psycare provides useful strategies Gerowyn Hanson on overcoming bitterness The story of Bryon Albury’s courageous life New projects and programs from Synapse Personal story on an undiagnosed injury

by Queensland Aged & Disability Advocacy Personal story on positive outcomes Statistics for Indigenous Australians ABIOS Indigenous projects in Queensland Taking control of stress, not being controlled Personal story on the trials & tribulations Brain Injury Networks are on the rise Assistive technology tips from LifeTec Getting by when resources are so distant

bridging THE GAP

Jennifer Cullen CEO of Synapse

Brothers & sisters Closing the Gap is a commitment by all Australian governments to improve the lives of Aboriginal and Torres Strait Islanders.

Synapse is proud to support the reform agenda and actively provide a supportive and leadership role in the areas associated of Acquired Brain Injury.

The national integrated Closing the Gap strategy has been agreed through the Council of Australian Governments (p.28). It is linked to a wider reform of Commonwealth-State financial relations, in areas such as education, housing and health, which have a clear focus on overcoming Indigenous disadvantage. There are six Closing the Gap targets, relating to Indigenous life expectancy, infant mortality, early childhood development, education and employment.

Synapse is funded by Home and Community Care, a joint Commonwealth and State/ Territory program providing funding and assistance for Australians in need.

Synapse is already building partnerships with Indigenous people in order to build on their ideas, strengths and leadership. These partnerships will go a long way to finding practical answers to long-standing health problems such as Acquired Brain Injury.

As mentioned in our previous Indigenous issue of this magazine, the main causes of brain injury in Indigenous communities are: • Alcohol-related brain injury • Head trauma from violence • Foetal alcohol syndrome in babies whose mothers drank during pregnancy • Sniffing volatile substances — petrol, glue and solvents.

The good news is that the statistics show improvements in many areas (p.21) and this will continue with a concerted effort by all concerned. At Synapse, we are excited about the several initiatives that we are involved in: our Deadly Connection (Indigenous mentoring program) and the Supported Accommodation Innovation Fund (p.15).

In 2011 and beyond the disparity in Indigenous and non-Indigenous morbidity and mortality rates can be reduced. And it’s a simple plan: if we all did a little bit more ...

Please join us in working with our Indigenous brothers and sistas to reduce the incidence of Acquired Brain Injury and to build a way deadly future for us all. ◗◗

AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS QLD QLD AUS NSW VIC TAS WA SA NT

Synapse Inc. Tel: 07 3137 7400 Email: info@synapse.org.au Headway Gold Coast Tel: 07 5574 4311 Email: admin@headwaygoldcoast.org Brain Injury Australia Tel: 1 800 BRAIN1 Email: admin@braininjuryaustralia.org.au Brain Injury Association of NSW Tel: 02 9868 5261 Email: mail@biansw.org.au BrainLink Services Tel: 03 9845 2950 Email: admin@brainlink.org.au Brain Injury Association of Tasmania Tel: 03 6278 7299 Email: enquiries@biat.org.au Headwest Tel: 08 9330 6370 Email: admin@headwest.asn.au Brain Injury Network of South Australia Tel: 08 8217 7600 Email: info@binsa.org Somerville Community Services Tel: 08 8920 4100 Email: scs@somerville.org.au

Web: www.synapse.org.au Web: www.headwaygoldcoast.org Web: www.braininjuryaustralia.org.au Web: www.biansw.org.au Web: www.brainlink.org.au Web: www.biat.org.au Web: www.headwest.asn.au Web: www.binsa.org Web: www.somerville.org.au

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Tracks in the shifting sands

Indigenous Australians with a disability connecting with their cultural heritage, communities and families

How well accepted or supported an Aboriginal and Torres Strait Islander person with a disability feels within their family and community of origin and culture varies.

“Not knowing about our heritage means we have a hole. . . a hole that needs filling. I have started filling in the gaps to learn more about our people. . . it does leave a gap if you don’t have that connection.”

(Yarning circle participant) For those who grew up separated from their families of origin as a result of being placed as children in institutions, often as a result of their disability, lack of connection with culture, indigenous community and family is a common theme. Being in an institution is a very different environment to living with family of origin in their community, and it can be difficult to move between the two. For some, being placed into an institution was the cause of their disability or mental health issues.

Other people left their communities later in life when their families could no longer support them. For example, an older man with an intellectual impairment from Far North Queensland moved to Brisbane to live in a supported accommodation service. Another person was living in the local hospital. Whilst she did not want to leave her community at Cherbourg, no services were available to support her to live in her community.

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clans and/or had experienced exploitation as a result of their disability. For example, one person who attended a yarning circle was very uncomfortable letting people know what clan he/she belonged to. This person felt unsafe within his/her own community and had moved away from their clan. “I am displaced and don’t belong anywhere.” Another person felt they were only valued by their family when their disability pension arrived. We are seen as a source of money in our family and only loved when we have money. We can be more vulnerable to being exploited or used.

Families can also become isolated from their Aboriginal and Torres Strait Islander communities and lose their connections to their culture.

“We become isolated and don’t have a place to share with others like us. Finding a place in the yarning circle is important to me.

We need to talk about opportunities for cultural exchange. I want my son to embrace his indigenous culture.”

(Yarning circle participant) Aboriginal and Torres Strait Islander communities and families, particularly in remote and regional areas, can have limited capacity to provide supports required for people with disability and/or it is not a priority within many Aboriginal and Torres Strait islander communities.

“First Nations people are historically lowest socioeconomic mob and disability is one of many so we just do what we have to do with what we’ve got,” (Yarning circle participant) Consequently, people are sometimes forced to leave their community and families making it difficult to maintain a connection. Others remain within their community of origin yet are not able to engage with, or participate in community life. One key issue, therefore, is how Aboriginal and Torres Strait Islander people with disability participate in cultural activities.

“Despite our disability we do have the ability to be part of our culture. We can’t dance but we can be storytellers. We can be unique and contribute to our culture. We can play a part in society. We have that right to be part of that culture.” (Yarning circle participant) Aboriginal and Torres Strait Islander people with a disability can have mixed experiences of belonging and support from family members.

“Some people in my family think I am a burden and others like my sister I depend on. I was able to live a life after I connected with my family.”

(Rockhampton yarning circle participant) Disability and people’s life experience is not well understood. Another underlying cause of dislocation is that disability is not well understood, acknowledged or discussed

within Aboriginal and Torres Strait Islander communities. If people are not seen or listened to then their lives are not valued and understood.

“Traditionally children and people with disability were left to die if they were unable to keep up. People can still be emotionally disowned in family or it may be difficult to discuss the issue of disability in families.”

(Logan elder) “I know that if you grew up with a disability as a child in our community, it was “hushhush”. They didn’t want to see them, they were hidden away in case they were taken away.” (Yarning circle participant) “People sometimes don’t understand our disabilities which may be why they don’t come forward. Many do want to help, they just don’t know how. There’s a lot of people who don’t understand. Mention to our people the word, ‘disability’, and the word doesn’t even exist.” (Yarning circle participant) Sometimes, other Aboriginal people do not really know the life experiences of people with disability. They have a perception that they are looked after by government. Stigma also exists within Aboriginal communities as it does within the wider community.

“I thought services would be connected, but they aren’t. You have to register at every different point. I helped my friend try and get a new wheelchair and I now believe him when he says how hard it is and how people don’t really listen.”

(Rockhampton yarning circle participant) These issues highlight the sensitivities and difficulties Aboriginal and Islander people with disability can sometimes have in their own community and their increased vulnerability to being exploited or ‘used’ by family and community.

Access to disability services & supports Obtaining adequate support for people with disability is often an issue. For people from Aboriginal and Torres Strait Islander backgrounds additional difficulties can exist.

The availability of services and supports can be limited or non-existent, particularly in remote and regional communities.

“I have been waiting over four weeks for a new electric chair. My old one is broken and I can’t get anywhere so I have to rely on a friend to push me here, there and everywhere.

My sister has six kids but she is still there for me.” (Rockhampton yarning circle participant) Understanding the disability service system can be a lifelong learning process requiring considerable skill, knowledge, resilience and persistence to navigate well. Aboriginal and Torres Strait Islander people with disability and their families often do not know what assistance and aids (for example, wheelchairs) they are

ABORIGINAL & TORRES STRAIT ISLANDER DISABILITY NETWORK OF QUEENSLAND Since 2005, the Aboriginal and Torres Strait Islander Disability Network of Queensland (A&TSIDNQ) has been steadily building a support base for a network of Aboriginal and Torres Strait Islander people with disability in Queensland. This is the first time that Aboriginal and Torres Strait Islander people with disability and their families, in Queensland, have formed a collective group to discuss social and health issues that impact on their lives. The need for a network of this kind is especially great in Queensland due to the state’s relatively large population of Aboriginal and Torres Strait Islander people with disability and the vast distances between the rural, remote and regional areas where many of them live.

This network is part of Queensland Disability Network, run and managed by people with disability for people with disability, and providing a mechanism for people with disability to have a say in the issues that affect their lives – to have a voice.

Like to know more? Call 07 3252 8566, visit www.qdn.org.au or email qdn@qdn.org.au entitled to, and find dealing with this system confusing and overwhelming.

“I was up in far North Queensland and a man was crawling around. He didn’t know how to get a wheelchair.” (Yarning circle participant) People are sometimes unwilling to access disability services because of the stigma of disability or fear arising from prior experiences.

Mainstream disability service structures and systems can be rigid and require the person to fit the service rather than the service to fit the person. They often do not understand or communicate in culturally appropriate ways.

(It was also noted that the term “culturally appropriate” was becoming a meaningless buzz word when it was used by service providers.)

“My Aunty was concerned about assessments. When people arrived with white paper and clipboards she always thought ‘they’re going to take me’. They shouldn’t use paper, they should just talk and meet them, yarn with them. Aunty sat there she said yes to everything because she was terrified. Yarn, no paper, just make an assessment that’s culturally appropriate.”

(Yarning circle participant) Even if people are able to access services, finding well trained Aboriginal and Torres Strait Islander people to provide support, particularly in remote and regional areas, can be difficult. Family members can find it difficult to have Aboriginal and Torres Strait Islander support workers given issues of kin and male/female protocols. Families may not want outsiders in their home yet having family members providing paid support raises many conflicting issues.

Aboriginal & Torres Strait Islander organisations and services Aboriginal and Torres Strait islander agencies and services sometimes do not recognise or provide inclusive services to Aboriginal and Torres Strait Islander people with disability.

For example, one Aboriginal and Torres Strait Islander family support agency was inaccessible for people who used wheelchairs. Nor are

Aboriginal and Torres Strait Islander people with disability well represented within Aboriginal and Torres Strait Health Services.

Aboriginal and Torres Strait Islander agencies and generalist disability services do not communicate with, or even sometimes know of, each other and therefore providing information and referral between Aboriginal and Torres Strait Islander organisations and disability services can be difficult.

Advocacy Given the many difficulties and vulnerabilities experienced by many Aboriginal and Torres Strait islander people with disability and their families, the issue of finding independent individual advocacy to obtain the supports they needed was a priority. The reality is few, or possibly no, such advocacy services exist.

Issues for children/younger people Identifying and acknowledging a child has a disability within families is sometimes difficult given that disability is not well understood or acknowledged. Within educational and other institutions, people can sometimes make racist assumptions about why a child is misbehaving.

Both these situations can result in children or young people not being properly diagnosed as having a disability. Without an accurate diagnosis (for example, intellectual impairment, schizophrenia, Asperger’s syndrome), this can affect the support and assistance received.

Many grandparents look after Aboriginal and Torres Strait Islander children with disability and this raises the issue of what happens to these children as their carers age. This issue is also relevant to adult Aboriginal and Torres Strait Islander people with disability who are cared for by their aging parents and families.◗◗ This article is an excerpt reproduced with permission from Tracks in the Shifting Sands, a report from the Aboriginal and Torres Strait Islander Disability Network of Queensland.

For more information, contact the Queensland Disability Network by calling 07 3252 8566, visiting www.qdn.org.au or emailing qdn@qdn.org.au

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Understanding family issues ABIOS explains some of the common family issues that can arise after a brain injury

The first two years after a brain injury are usually busy with the process of recovering, and social activities usually take a back seat to rehabilitation. But in the long run, the loss of friends, employment opportunities and meaningful activities is one of the most difficult ongoing problems.

Acquired Brain Injury (ABI) can have a significant impact on an individual, but it can also result in changes for all members of a person’s family and community. For family members in a close relationship with the person with ABI, there can be a range of changes in roles and responsibilities, and involvement in a person’s life that we need to understand to work effectively with them and with the person with ABI.

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Impact of brain injury on the family It is important to understand that families have had little opportunity to prepare for a brain injury. Some families have good skills in coping with a major trauma or illness; some families may not have acquired those skills. No one finds it easy to adapt and cope with all of the changes in their lives that a brain injury may bring. Families themselves may need information, education, support and counselling to assist them in coping with the major challenges that they have in front of them.

Uncertainty about the future for themselves or their family member may be an issue, particularly early on after an injury. There may be quite dramatic changes in finances, employment, driving, community involvement or relationships with others. A future that

was certain or predictable may no longer be that way.

Changes in roles There may changes in roles in the family, as the person with ABI is unable to continue in their previous roles or responsibilities.

Family members may have extra responsibility for work, transport, managing finances, managing family decision-making, and for providing emotional or practical support or care.

Burden of Care Burden of care for family can increase over time. As the person recovers from the initial injury, and support from extended family, friends, workmates, and community diminishes or decreases, family members may find their burden of care or work increasing steadily.

Competing demands Family members can have a range of competing demands and needs, both for their time, energy, involvement and participation.

Caring for someone with an ABI may mean that a family member has less time for other relationships within the family or with friends.

Partners, spouses, and children may sometimes feel left out, neglected, or excluded from decision-making. This can sometimes lead to competition and conflict.

Relationships with others in the family and with friends can be damaged or lost as a result of difficulty in responding to everyone’s needs.

Family members may find that their own needs become less important, or neglected in the urgency or demands of providing care and support to a person with ABI. They may find they do not get time for their own interests, recreation or relationships, and don’t pay enough attention to their own psychological or physical health. They may not take time out from being a carer to have rest and relaxation and to renew their own energy.

Isolation over time As time goes on following an injury, after months and years have passed, family can find that they have become increasingly socially isolated and alone. Demands to provide care and support can take up so much time, they may lack the time, energy and resources to maintain their own family, social and community networks.

As a result families may have less emotional or practical support over time.

Grief and loss Families may have ongoing issues with grief, loss and adjustment to changes associated with an ABI. Families experience the losses for the person with the ABI (loss of hopes, dreams, ambitions, and ability to be independent) but also their own losses (loss of independence, loss of intimacy, loss of friendship, loss of sexual relationships, loss of financial security, loss of family, loss of time alone).

They may experience sadness, anger, confusion, anxiety, and depression.

Family relationships & dynamics It is important to be sensitive to existing family structures and relationships in working with the whole family. Individuals with ABI and their family may have lost some of their sense of independence, autonomy and their personal privacy, as they become involved with the medical or hospital system, sometimes for the first time.

For many, communicating and negotiating with professionals in services in a new thing, and may be something they were not prepared for.

Family may be wary or reluctant to disclose information, to be involved, or to commit their energy and time to people making demands or providing community based services.

Family may have had a range of experiences (negative and positive) with medical, health or community services that present barriers to new working relationships.

Building a good working relationship, working on communication and building trust are key areas to consider in working successfully with families.

Carer fatigue Family members may sometimes be overwhelmed and exhausted by the emotional and physical demands of providing long-term care to a person with ABI. This is particularly the case where one or a few family members take responsibility for providing care over many years.

Placing demands on family to provide care, to implement strategies or to work towards new goals, can sometimes present a huge challenge or demand that is hard for the family to meet.

Family can seem to be difficult, critical, uncooperative or unsupportive of new ideas or plans but they may not have the energy to do more than they are already doing. It is important to take into consideration the capacity of each family to take on new ideas and tasks.

Over-protectiveness Family members can sometimes be more protective of the person with ABI following a severe injury. Particularly in cases of a sudden injury, such as a traumatic brain injury or a stroke, where a person was severely injured, or close to death, they may be reluctant to risk further injury or have harm come to their family member.

Families can sometimes be cautious, wary of new ideas, and worried regarding the consequences of small changes and what might happen in the future. ◗◗ This article is reprinted with permission from the ABIOS fact sheets available at www.health.qld.gov.au/abios/ ABIOS is a specialist community-based rehabilitation service to enhance the service system for people with ABI and their families. Their mission is to assist people with ABI in Queensland, their families and carers to achieve an improved quality of life and community integration through increased independence, choice, opportunity and access to appropriate and responsive services. Ring ABIOS on 07 3406 2311 or email abios@health.qld.gov.au

Our previous Indigenous issue

It is now three years since our first magazine dedicated to Indigenous issues. This excerpt from the editorial from our CEO, Jennifer Cullen, is just as relevant today as it was three years ago.

Huge contributions from the original Aussies It is simply amazing to see how Indigenous Australians have contributed to this country through music, dance, art, politics, literature, sport, cinema, poetry, tourism, the environment, television, poetry and social justice.

But many Indigenous communities across Australia face serious health problems, particularly in the area of Acquired Brain Injury. The main causes are: • Alcohol-related brain injury • Head trauma from violence • Foetal alcohol syndrome in babies whose mothers drank during pregnancy • Sniffing volatile substances — petrol, glue and solvents.

Many proactive solutions are needed. While celebrating the achievements of people like Cathy Freeman, Eddie Mabo and Noel Pearson, we also need practical strategies that can reduce the incidence of Acquired Brain Injury in Indigenous communities.

Missed the previous issue?

Like to read more about Indigenous issues when it comes to Acquired Brain Injury? Go the website and download a free copy of our Dec 2008 back issue.

Topics included: • Indigenous musicians • An A to Z of Indigenous cultures • Personal stories • The national angle on Indigenous brain injury issues • Your brain and sniffing glue, petrol or paint • Projects in remote Indigenous communities.

Download your copy now, and check out other back issues while you are there! ◗◗

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Understanding the nervous system Let’s take a look at all the different parts of the nervous system — the brain, spinal cord and nerves We’ll briefly explain what each part does, how the different parts of the nervous system communicate with each other and the rest of the body, and discuss the effects of disease or damage to it.

The Brain The brain is the body’s control centre. It may only weigh about 1.5kg but it is estimated to have about 100 billion cells. It controls everything we do from basic body functions, such as breathing, heart beat and blood pressure to our movements, speech, senses and aspects of our personality.

The frontal lobes look after planning, organising, reasoning, decision-making, judgement and the emotions.

The temporal lobes also have a role in language, particularly in the ability to hear and understand it. They are concerned with memory, the emotions, the ability to enjoy music and to recognise and identify things we see, such as faces or objects.

The brain stem controls many vital functions including breathing, blood pressure, blood circulation, swallowing, appetite, body temperature and digestion, as well as the need for water, staying awake and sleeping, among other things. It is also the main route for nerve fibres running between the cerebral hemispheres and the spinal cord. Any damage in the brain stem can produce widespread and profound effects.

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Cerebral Hemispheres The brain is divided into two cerebral hemispheres – the left hemisphere and the right hemisphere. Each hemisphere tends to specialise in certain functions but the two hemispheres work seamlessly together, sharing information.

Right hemisphere: The right hemisphere tends to be more visual, thinking in pictures.

It sees, recognises and organises information for the left side to analyse and process further.

Generally speaking, the right hemisphere controls muscles on the left side of the body.

Left hemisphere: The left is mostly responsible for speech, language, calculations, maths and logical abilities. It generally controls muscles on the right side of the body.

Lobes The brain is divided further into “lobes” that handle specific areas of function, the frontal, parietal, temporal and occipital lobes. You can see in the diagram below how damage to the brain can affect many different functions and abilities.

Below the cerebral hemispheres are the cerebellum and the brain stem, which connect with the spinal cord.

The parietal lobes are concerned with the perception of sensations, such as touch, pressure, temperature, pain and the understanding of words and sentences, reading and writing and sometimes the ability to use numbers. They deal with spatial awareness, such as our ability to find our way around a house, to drive a car and to reach for objects.

The occipital lobes are primarily concerned with vision but also with our ability to recognise what we see in terms of identifying colours, locating objects in the environment and seeing objects accurately.

The cerebellum is involved in “doing” rather than “thinking” activities. It carries out orders from the cerebral hemispheres above and keeps a number of vital but routine functions kicking over, such as maintaining balance and ensuring our muscles move in a smooth, coordinated way.

The Nervous System The brain communicates messages through a complex network of nerves that travel throughout our body.

Together, the brain and nerves are known as the nervous system, while the spinal cord and the brain make up the central nervous system.

On their own, the nerves that run throughout our body are called the peripheral nervous system. They relay information from our brain through our spinal cord to the body, and back again.

The autonomic nervous system is part of the peripheral nervous system. It conveys messages from all of the organs in our chest, abdomen and pelvis. For example, it manages our “fight and flight” responses, our “rest and digest” responses.

It looks after the automatic activities of our heart and blood vessels and plays an important part in sexual response and bladder control.

Neurones – Basic Building Blocks The basic building blocks of the nervous system are nerve cells or neurones. We are born with about 100 billion neurones that must last a lifetime. Unlike all the other cells in the body, neurones do not replace themselves if they die or are damaged.

Grey matter: When neurones cluster together, they form grey matter on the outer part of the brain and inner part of the spinal cord.

White matter: White matter is found on the inner part of the brain and outer part of the spinal cord. It is made up of bundles of nerve fibres called axons, which are really just the long thin extensions of neurones. These axons are covered by a white, fatty substance called myelin (hence the term “white matter”), which insulates them, like the plastic coating of an electric wire. The axons then bundle together, like the individual telegraph wires in a cable, to form a nerve.

How it all Works The brain is in constant contact with all parts of the body, sending instructions and receiving feedback from the senses. The axons carry these messages as tiny electrical currents or nerve impulses.

Outgoing messages: Messages sent from the brain to activate the muscles of the body travel along the motor pathways. The neurones that make up these pathways are called motor neurones.

Incoming messages: Messages sent from the senses back to the spinal cord and brain come along the sensory pathways. These are called sensory neurones.

How Change Affects the Nervous System Various conditions from illness (encephalitis) and incidents (heart attack, stroke) to accidents (near drowning, a skateboarding fall) can cause brain damage, which affect the way the nervous system functions by: • affecting brain function itself • affecting the brain’s ability to communicate with the rest of the body • affecting the ability of muscles to respond to the brain’s orders (nerve impulses).

Acquired brain injury Damage to the brain is called Acquired Brain Injury. An accident, illness or incident can cause direct injury to the brain cells, and any interruption to the blood supply to the brain may also cause damage. Without a constant blood supply, the brain is unable to maintain its extraordinary level of functionality.

For example, a lack of oxygen (hypoxia) during near drowning affects blood supply to the brain, as does severe bleeding in other parts of the body or any excessive pressure within the skull, which might occur due to brain swelling or bruising.

Changes to the brain and nervous system can lead to the following kinds of issues.

Medical problems: Headache and epilepsy are two of the most common.

Sensory difficulties: Sight, hearing, touch, smell, taste, body-temperature control and awareness of body position can be affected.

For example, some people may become hypersensitive to sound, heat or cold. Others may lose awareness of body position, which creates problems with buttoning shirts, using a spoon or stepping off a curb safely.

Physical difficulties: The most obvious problems are paralysis and limb weakness or problems with coordination, balance and tremor. Fatigue is also very common.

Thinking abilities: Poor concentration, memory loss and difficulties in planning, organising, problem-solving, abstract thinking and responding effectively may arise. Slowness in thinking is very common.

Communication and speech difficulties: Speech may be affected by becoming slurred or difficult to understand. Some people may have trouble swallowing. Others have difficulties using language, such as finding the right words or understanding sentences.

Behaviour: A person may become aggressive, lack initiative or be poorly motivated. They may have difficulty regulating their own behaviour in a way that is socially acceptable. For example, a person with ABI may make inappropriate jokes.

Personality: Personality changes can occur as a result of damage to the brain. One example is having difficulty regulating emotional responses, such as becoming irritable or laughing or crying too easily.

Personality change can also be the result of a person’s reaction to having ABI, which is often the case with depression.

Some of the effects of ABI are obvious and profound while others are subtle, yet disabling.

The effects will vary widely from person to person and the recovery process may continue over many years. ◗◗ This article has been reproduced with the permission of BrainLink, from their excellent brain injury resource available for free download at www.brainlink.org.au This publication is split into sections covering medical issues, common changes after a brain injury, practical assistance and emotional issues. The website also has a wide range of fact sheets on many other issues. BrainLink is a Victorian service dedicated to improving the quality of life of people affected by conditions of the brain, and providing support to their families.

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Indigenous advocacy service Queensland Aged and Disability Advocacy Inc. (QADA) is a free, confidential and independent service based in Queensland that supports people requiring advocacy.

QADA can represent their interests through a variety of channels, with services extended to younger people with disabilities, whether they live in aged-care facilities or are supported to live in the community.

When might you need an Indigenous advocate?

Everyone’s needs are different, so identifying the times when you need an advocate can vary. You may need information or support from an advocate about your care when you are: • unsure about your options • feeling pressured to make a choice • faced with a tough decision about the care you need • not satisfied with the care you are receiving • feeling confused about a care decision.

Occasionally, a person may need someone to support them on their behalf in order to access a level of service that meets their needs. At these times, family members or friends may be able to provide support. However, when appropriate support is not readily available, an advocate may be able to provide assistance. This assistance may include: • providing information • exploring options • concerning rights and responsibilities • referrals to specialised agencies in the community • liaising with a service provider.

What will I receive?

• Accurate information about your rights and responsibilities • Confidentiality to discuss your needs and concerns • Support at assessments for services • Help to explore options relating to your situation • Support to work through a problem or issue.

How can I access an Indigenous advocate?

Advocates are flexible in the way they work with individual clients. You can receive information and support from an advocate: • from our quarterly newsletter.

• at residents’ meetings attended by advocates.

• at consumer and community group meetings attended by advocates • through individual face-to-face meetings.

CAll QADA toll-free on 1800 818 338, visit their website at www.qada.org.au or email info@qada.org.au ◗◗

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Peter’s story

The importance of reconnecting After a life-changing dream and a series of adventures, Peter came home to Woorabinda for the first time in 1987.

“I still remember going through the gates. It was an awesome feeling. . . a big sigh of relief, tears streaming down my face. These arms just around me. . . Well you’re home now. Although I had spent some time on holidays with my mother and father, it wasn’t until I got back home to central Queensland that I knew what family was. I had no idea what they might mean and to this day how important it is to be connected. I consider myself very fortunate to hook up to family because still lots of people are disconnected from who they are and where they should be.”

Peter lived there for three years.

“I didn’t know if I could live here but it was home. It was very difficult being in my wheelchair. I didn’t get any time to think about what I couldn’t do. You just had to do it. If I wanted a feed I would just have to climb up stairs and they were big Queensland houses.

Everyone had their own issues they had to deal with. At the time I drank and smoked to excess… did what everyone else did. . . trying to fit in.”

Yet for Peter making close connection with family was well worth the difficulties he encountered. He respects them and they respect him. One of the best memories was spending time with his Auntie, his mum’s sister, who has since passed on.

“She was an absolute inspiration. Auntie told me, ‘If you got something to say. Say it straight!’

It’s the best advice I remember. She was a gift

of God. I thank Auntie for giving me that determination.”

Peter is concerned about his community at Woorabinda. While not a lot of people use wheelchairs at Woorabinda, people experience a range of other disabilities like hearing loss, foetal alcohol syndrome and the effects of petrol sniffing. Peter wants people to receive the services and respite they need, and he wants to encourage others to provide practical services.

“I am hoping someone may listen. Ignorance is Australia’s biggest disability. . . If people are aware of the issues going on in communities they may become more accessible.”

“Once when I came home to visit Woorabinda, I was asked where I got my wheelchair. ‘I don’t know Aunt I am working in Adelaide but I’ll see what I can do.’ Anyways, I asked some people in Adelaide what the process might be and unfortunately the process was different to access services. I was not able to help that person and they since passed on.”

“The question I have is what did you do for people while they were alive? Through helping each person we learn something. It’s not so much about individuals and grandstanding but about people like my Auntie who looked after nine grandchildren and didn’t want to leave her community. She felt safer where she was even if this meant not getting services. People have to look at real issues even if service providers don’t agree with decisions they make.” ◗◗ This article is reproduced with permission from Queensland Disability Network (QDN). Contact QDN by on 07 3252 8566, visit www.qdn.org.au or email qdn@qdn.org.au

Managing traumatic stress symptoms A traumatic brain injury can leave memories that become traumatic in their own right Traumatic events are unexpected and negative incidents that suddenly and unexpectedly intrude on our daily lives.

Traumatic events can be as mild as sudden changes in physical circumstances such as missing an appointments, minor accidents, or the sudden departure of work colleagues or friends. They can also be severe stressors like major medical conditions, the death of a loved one, severe and unexpected physical injury due to accident or assault and/ or major financial stressors and sudden unemployment.

Of course the severity of the trauma experienced varies across individuals and situations, and an event that someone may find mildly traumatic may be experienced as severely traumatic for someone else.

When you experience a traumatic event it is quite normal to have strong emotional or physical reactions. These reactions often remain after the traumatic event has ceased, and can takes days or weeks to subside. Sometimes the symptoms of a stress reaction may last longer than days or weeks depending on the severity and circumstances of the trauma and available follow-up support.

Common Reactions Common physical, cognitive (thinking) and emotional reactions indicative of traumatic stress are outlined below: Physical • Fatigue/ exhaustion • Disturbed sleep or nightmares • Nausea • Restlessness or excessive alertness • Headaches.

Cognitive (thinking) • Poor concentration, attention and memory • Flashbacks • Intrusive thoughts • Disorientation and confusion.

Emotional • Fear or guilt • Numbness and detachment • Oversensitivity • Avoidance • Anxiety and panic • Depression, withdrawal and tearfulness.

These are normal reactions. Although these symptoms can be distressing, they are part of the natural healing process that a person goes through as the mind and body readjust and come to terms with what has occurred.

It is quite normal to have strong emotional or physical reactions to traumatic events. These reactions often remain after the traumatic event has ceased, and can takes days or weeks to subside. With understanding and support from family, friends and colleagues the stress symptoms usually resolve more rapidly.

However, sometimes a traumatic event can be so distressing and the ensuing distress so severe that professional assistance from your psychologist may be warranted. Psychologists have extensive training in dealing with difficult stress symptoms and assisting in the resolution of complex and painful emotional and physical trauma symptoms.

Things You Can Do To Help Yourself There are several things you can do to look after yourself and promote recovery from stressful events. The following points provide some general advice. See a psychologist for further information and detailed strategies.

• Recognise that you have been through a distressing experience, and acknowledge that you will experience some reaction to it. Excessive denial or refusal to accept your feelings can delay the recovery process. Remind yourself daily that you are not abnormal, and that you can, and are, coping. Don’t be angry with yourself for being upset.

• Avoid overuse of alcohol or other drugs to cope. Also avoid making any major decisions

or big life changes.

• Do not try to block out thoughts of what has happened. Gradually confronting what has happened will assist in coming to terms with the traumatic experience.

• Don’t bottle up your feelings. Talk to people and share your experiences with other when opportunities arise. This may feel uncomfortable at times, but talking to understanding people is helpful in dealing with trauma. Your psychologist is highly trained and supportive of your need to talk things through, and can be an extra support if needed.

• Try to maintain a normal routine. Keep busy and structure your day. Make sure you do not unnecessarily avoid certain activities or places. Allow yourself time to rest if experiencing fatigue, and remember that regular exercise is important.

• Let your friends and family know of your needs and the normality of your reactions.

Help them to help you by letting them know when you are tired, need time out, or need a chance to talk or just be with someone.

• Make time to practise relaxation, whether you use a formal technique such as progressive muscle relaxation or just make time to absorb yourself in a relaxing activity such as gardening or listening to music. This helps your body and nervous system to settle and readjust.

• If the trauma that you experience stirs up other memories or feelings from past unrelated stressful events, or even childhood experiences, try not to let them all blur together. Keep them separate and deal with them separately.

• Express your feelings as they arise. Whether you discuss them with someone else, or write them down in a diary, expressing them in some way helps the healing process. ◗◗ This article is reproduced with the permission of Psycare from their range of fact sheets at www.psycare.com.au

PSYCARE: CLINICAL & CORPORATE PSYCHOLOGY Psycare is a dynamic team of psychologists based in Brisbane, Queensland, providing corporate and clinical consulting services.

Corporate services include leadership assessment, coaching and development; organisational health audits; team development; wellness programs; grievance investigations; policy review, education and training; & early intervention, employee assistance, mediation and debriefing.

PsyCare Clinical & Community services include assessment, treatment, rehabilitation and support programs for adults, families, couples, teenagers and children across a range of common psychological problems. PsyCare works closely with private and GP referrals; worker’s compensation and CTP insurers; & disability, child and family organisations.

• Tel: 07 3839 4400 • Fax: 07 3839 4455 • Email: manager@psyhealth.com.au • Website: www.psycare.com.au 10 / B R I D G E M A G A Z I N E

Eve’s story

Eve was born in Sydney in 1955 and lived on the Asquith River in the Hawkesbury with her family. At five, she and her brothers and sisters were taken away by whitefellas. Eve lived in foster homes and detention centres where she was sexually assaulted and bashed.

“People called me a black dog and said I’d never amount to anything and in the end I believed them. No one wanted you. . . I was pretty damaged in the head by the time I was 18. “ Eve got into crime, prostitution, drugs and bad relationships. She had her children taken away from her. She finally ran to Queensland with two of her children, both of whom had an intellectual impairment.

“I decided I don’t want to live like this anymore. I got a job. I went to see doctors and got treatment for my mental health issues.”

Eve married a good man and has lived on the Sunshine Coast for 26 years. She is involved in the Cultural Healing Indigenous Art Group and has recently attended Network meetings which she has found helpful.

“Because of my life, some of my illnesses and fears have been passed on to my kids. I worry and wonder what will happen to them. What happens if I am not around? My boy may be feeling mentally unwell. I say ‘Come on, Let’s get through today.’ I hang in and support him. I won’t give up on him. That’s all I can do.

Hang in there and help him.” ◗◗ This article is an excerpt reproduced with permission from Queensland Disability Network (QDN). For more information, contact QDN on 07 3252 8566, visit www.qdn.org.au or email qdn@qdn.org.au

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Unbeknown to most people, my brain injury was caused by a criminal act. There have been legal implications which have prevented my speaking out too much. The police investigating the car accident seven years ago warned that if I talked publicly, made accusations or mentioned names, it would be me who would end up in court.

While this caveat has intimidated me in the past, I felt it was unfair that I should be the one to suffer in silence. I have struggled to understand why the criminal or criminals concerned did this to me. The feeling of powerlessness from not being able to do anything has caused depression and on-going anxiety attacks from PTSD (post-traumatic stress disorder). I am angry that the perpetrators will probably never be brought to justice. The police have been unable to prosecute, since like so many crimes, while there was evidence, there was no proof. Recently though, I have started to talk openly to a handful of close friends and relatives about the cause of the accident. I have, however, been prudent in not naming anyone, but rather asking the listeners to draw their own conclusions. Not surprisingly, most people already had.

Lasting effects of a crime How does one cope with being the victim of a violent act which has slipped through the justice system? What about us, the injured parties left suffering physical and/or psychiatric wounds which are often permanent?

Do victims whose cases are successfully

prosecuted feel any vindication?

I am not alone in being the victim of a crime.

There are thousands of people out there who are in the same boat. Most feel a mixed bag of emotions ranging from anger, frustration, hate, despair, and eventually — hopefully — forgiveness.

We ask ourselves, why me? Secretly, we might fantasise about revenge. None of this is especially helpful, and more often keeps us trapped in our own prison of victimhood.

In addition, we are forced to deal with the permanent ill-effects of the crime on a daily basis. Physical injuries can lead to complications such as pain, disfigurement, immobility, coordination difficulties and on-going medical procedures, to name a few.

Neuropsychological and psychiatric problems such as lack of cognitive and social skills, PTSD, ABI (Acquired Brain Injury), depression, loss of self-confidence and sleep disorders can impact dramatically on our lives for years. As time goes by without any resolution, it becomes a thorn in the side, knowing that someone did this to us but will never pay for their crimes.

What can we do?

Talking about it can help, whether with trusted friends, a self help group for victims of crime, or a psychologist, for example. Through these avenues, the feelings of helplessness and anger can be processed. Making the choice to decide how we deal with torrid emotions is the first step. In time, it is possible that the powerlessness can be replaced with a sense of

Doug’s story

Letting go Doug was born in Camooweal in 1966.

Gerowyn Hanson talks about overcoming the anger and bitterness toward those who caused her brain injury

peace. Cindi Broaddus, author and sister-in-law of the TV presenter, Dr Phil McGraw, describes in her interview how she made her own choices:

“I decided early on that I did not want to be a victim, that bitterness was not the legacy I wanted to leave . . . and that vengeance was not mine.”

While her physical injuries were mending, she decided to heal herself from the inside out.

The healing process for me did not start until a couple of years after the accident. One of my specialists became seriously concerned about my mental and physical wellbeing. He was worried that my obsession over the perpetrators getting off scot-free was dominating my thoughts.

Such intense focus, he warned, was causing undue stress that could even trigger a stroke. It was suggested that I start focussing on all the positive aspects in my life, and feel a sense of gratefulness for being in a better position than many other people on this earth. He explained that, as I do not have a criminal mind myself, I would never be able to comprehend the motivation for their evil acts.

By teaching me CBT (Cognitive Behaviour Therapy) I learned to challenge negative thoughts while reinforcing positive ones. Rather than stress over what I could not control, it was better to realise that these criminals were not capable of anything better. This was not easy. I am not christian but was reminded of a quote

by Jesus: “Forgive them for they know not what they do.”

A couple of years later, I realised that my attitude had changed when I looked at the suspects and compared their lives with mine.

They do not measure up. For them, little has changed. They are still out there committing crimes and generally being nasty folk. Many people know what they really did and have offered me support. On the other hand, in spite of the violence having taken away certain aspects of my former life, I have gained a sense of c’est la vie. I am grateful for a life that is full and satisfying, surrounded by loved ones.

Do not misinterpret me: I do not condone what those people did, but neither have I allowed their evil deeds to interfere in my life.

Basically, they failed. I have not only survived, I have thrived. I want to declare to them, “…

Look upon my life . . . and despair!” When a sense of peace comes from knowing that you have moved on from the past and the people who attempted to affect it, you can begin to let go. ◗◗ USEFUL ORGANISATIONS • “A Random Act”, Cindi Broaddus: www.DrPhil.com • Beyond Blue: www.beyondblue.org.au • Crime Stoppers: www.crimestoppers.com.au and www. police.qld.gov.au • ecouch: www.ecouch.anu.edu.au • Enough is Enough: www.enoughisenough.org.au • Lifeline, ph: 131114: www.lifeline.org.au • MoodGYM: www.anu.edu.au • Support for Victims of Crime: www.vocal.org/support-forvictims-of-crime • Victims of Crime: www.victimsofcrime.com.au • Victims Services: www.law.qld.gov.au

“Mum couldn’t look after me so when I was a few months old, her mum took me Townsville to live at Cootharinga: a nursing home for children. Quite a few Aboriginal and Torres Islander kids lived there.”

Cootharinga was Doug’s home for seventeen years.

“I found it a place of very strict rules… it was like a drill in the army. We were made to go to church… we were made to go to bed early… I found it rather difficult.”

When Doug went home for holidays, he would hang around the house with his sisters. He had to be carried up and down the stairs.

“Home was good but it was very different. I was torn. “ In 1990, Doug decided to move to Brisbane for ‘a change of scenery’. He had no friends or family in Brisbane, but received support from the Cerebral Palsy League. Doug decided he wanted to live independently.

“The best moment in my life was moving out of Cerebral Palsy League accommodation into my own place…”

Doug believes his life has changed for the better.

“I’m getting out more … I want more understanding about life. I joined Access Arts… it was fantastic!”

One of Doug’s achievements is writing the lyrics to songs that have been made into a CD. “I’ve always kept to myself but I’ve done what I want to do even though I’m in wheelchair. I’m not going to give up.”

Being part of the Queenslanders with Disability Network is important to Doug. Through the network he is meeting more people and he has found a place to share his story.

“I would like to encourage more indigenous people to work with us. “ ◗◗ This article is an excerpt reproduced with permission from Queensland Disability Network (QDN). For more information, contact QDN on 07 3252 8566, visit www.qdn.org.au or email qdn@qdn.org.au

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Strength through culture Byron Albury is a man of Aboriginal and Torres Strait Islander heritage living with a disability He has Cerebral Palsy however despite his disability he works tirelessly seeking out and striving to bring together Queenslanders with disabilities that are of Aboriginal & Torres Strait Islander heritage as part of his role as the coordinator of the Aboriginal and Torres Strait Islanders Disability Network of Queensland (ATSIDNQ). For Byron his strength and passion for the work he does is fuelled by his pride in his cultural heritage and his disability.

Though Byron does not have an Acquired Brain Injury he often meets many people of Aboriginal and Torres Strait Islander (ATSI) heritage that do. By bringing ATSI people with disabilities together the ATSIDNQ hope to (among other things) collect and 13 / B R I D G E M A G A Z I N E

document the key issues facing Aboriginal and Torres Strait Islander people with disabilities.

Byron’s work with this organisation will help to increase awareness and education as well as understanding. In doing so it is hoped that Byron and his colleagues will be able to improve the quality of service delivery to Queenslanders living with a disability.

Byron was born in Central Queensland in Rockhampton.

According to Byron, the Alburys are spread out across Queensland, but their original base was in Rockhampton. His mother descends from the Darumbal People of North Rockhampton, in the Bowen Region. His grandfather is also from the Darumbal People whose traditional

lands include Carnarvon Gorge. On his grandfather’s side their land claim goes back to 1850.

“I was raised by my grandmother and when she was still with us, when the rest of the family came together my grandmother ensured that I was treated equally.”

Byron’s grandmother was an amputee. She lost her leg when she was twenty years old and used crutches and sometimes wore a prosthetic leg. She had compassion and felt support for Byron throughout his life.

Byron was taken away from his home in Rockhampton when he was two and a half years old due to his disability. He was placed into a Cerebral Palsy League childrens’ home

in Brisbane where he would live for the next eighteen years. His grandmother would visit him and he returned to his grandmother’s home during the holidays.

“I attended the first ‘integrated’ school that was wheelchair accessible and disability friendly.”

Byron spent eight and a half years in special school located in New Farm just down the hill from the childrens’ home. While there he said that he learned how to use computers, video games and received an education.

The Cerebral Palsy League is still one of four main service providers assisting Byron to this day. He says he is fearlessly loyal to the organisations that have helped him through the years.

Byron is proud of his Aboriginal heritage and goes back regularly to visit his ancestral lands.

“My Great Aunt Winifred was proud of her heritage and it was a shame that she did not live to see our people’s land claim lodged and to see our claim taken seriously by policymakers”.

“Like my grandmother and my great aunty Winifred, I was taken away from my family and people so I can understand what the experience would have been like.”

“I see myself as the third generation of the stolen generation, mark two, a generation X-er with a disability who grew up in white institutions and learnt to understand the white system.”

Byron believes his knowledge of governmental processes has helped others who often seek his advice on how to access services.

“I know a lot about the pathways to accessing disability services, I just wish I knew as much about my own traditional heritage.”

Byron’s grandmother was a member of Australia’s ‘stolen generation’, children of Australian Aboriginal and Torres Strait Islander descent removed from their families by the Australian Federal and State government agencies and church missions, under acts of various Australian parliaments. The removals occurred in the period between approximately the late 1860s and late 1960s with some incidences of removals taking place in the 1970s.

It was a period of absence of family connections, lack of cultural tradition, connection with country and ceremony for many Aboriginal and Torres Strait Islander people.

Byron’s grandmother was taken when she was very young from her home of Bowen and sent to a Mission situated forty minutes outside of Rockhampton.

Byron believes that at one point, when he visited this mission as a teenager, he thought

he could sense a feeling of unrest of those departed Aboriginal and Torres Strait Islanders who passed through the mission. He wondered if their souls could have been guided to rest if they had had access to their cultural beliefs, traditions and ceremonies.

“I was seventeen years old and sitting in a ute that stopped outside the mission when I saw the mission for the first time and it scared me,” said Byron.

After Byron’s grandmother’s death Byron felt that he had lost his cultural connection, and his connection with family.

“I was fortunate to have made friendships with school mates and a number of teachers, and I have special relationships with friends that I respect and admire.”

“I go back regularly to my grandfather’s people’s lands,” said Byron.

Byron is keen to educate the general public and to see more facilities and venues providing adequate access for people in wheelchairs.

International standards that ensure improved access to public facilities for people with a disability is an issue that Byron is passion about.

Byron is married and lives with his wife in a southern suburb of Brisbane. As a facilitator and coordinator at ATSIDNQ, Byron says he never could have predicted that he would find himself in that role and he feels blessed to have the chance to be able to speak and connect with so many people.

Surviving the Christmas period Christmas is a busy time of the year for families and relationships. Living in a close relationship with another person can be both a source of comfort, support and fun, and also, at times, a source of distress, frustration and despair. Close relationships typically go through phases of development with normal highs and lows in attraction, energy and enthusiasm.

The fluctuations in relationship satisfaction are also influenced by other factors including our own level of tiredness; skills in communicating, problem solving, and managing stress; our ability to deal with outside pressures such as work, family, finances; and our own dreams, goals and expectations for our own life and our relationship.

Our consultants at PsyCare note below their top strategies for embracing the holiday period and relationships at Christmas.

Besides his work at ATSIDNQ, Byron is the President of the Board of Management of Queensland Advocacy Inforporated (QAI), an independent, community-based systems and legal advocacy organisation for people with disability in Queensland, Australia.

1. Managing the stress of multiple events and competing relationships — distance yourself from the event and don’t personalise comments. There are some family members you may need to treat like a work colleague — be polite but don’t feel that you have to engage.

QAI’s mission is to promote, protect and defend, through advocacy, the fundamental needs and rights and lives of the most vulnerable people with disability in Queensland.

2. Make time for your special relationships. Take some time to reflect on the year — the positives and the areas you want to change for next year.

“I like working in my current roles as they give me job satisfaction, I’m working for me, I chose to help people that I want to help and I have found that it is within my power to make a difference. And that’s what counts.”

3. Acknowledge issues rather than ignore them. If you have a friend of family member who has a hard time at Christmas due to loss or grief, ask them how they would like to acknowledge that person, rather than ignoring the situation.

“I praise my ancestors everyday when I think of where I’ve come from, and what I’ve achieved.”

4. Plan and problem solve the difficulties before hand and have a contingency plan. Be realistic, don’t expect things will be perfect — people will be tired.

And what does he recommend to others with a disability seeking fulfilment?

“Believe in yourself, no matter what anyone else says.”

To find out more about the ATSIDNQ call 07 3252 8566 or to contact Byron Albury email atsidnq@qdn.org.au ◗◗

5. Don’t be afraid to create a new tradition or change a routine within families e.g. move from Christmas dinner to breakfast.

Psycare EAP consultants specialise in relationships and families. For more information, contact Psycare using the details below. ◗◗ This article is reproduced with permission from Psycare, a team of psychologists based in Brisbane, Queensland.

Call Psycare on 07 3839 4400 or visit www.psycare.com.au

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Ted’s story

Ted was born and raised in Mossman, Far North Queensland. He was born with glaucoma. After leaving school, Ted travelled, living and working in many different parts of Australia. By the mid-eighties, Ted’s eyesight began to deteriorate and over time he lost his eyesight completely. Yet he still travelled around with a little help from his family.

“I knocked about with my cousins. They gave me a hard time, paying me back!”

However work became harder to find.

“No-one wanted to know me. I was feeling pretty sorry for myself.”

By the late nineties, Ted decided he needed to do something. He heard about Disability Services Queensland through his cousin’s wife.

“My Local Area Coordinator got me involved in all sorts of things which opened up a few doors. At that time there were few or no services for people with vision impairments in far north Queensland. I had to go to Townsville for mobility instruction with the Guide Dogs. We started a support group in Cairns for people with vision impairments.”

Ted is an active in many different groups including being an A&TSIDNQ member.

“People just don’t know what is out there. Most of these towns have nothing set up for Aboriginal and Torres Strait Islander people with a disability. Unless you are ‘on the books’ there’s nothing and people have no idea of what is available. When I went up to the Torres Strait and the Cape people were asking me for all sorts of information. It’s important to share information and help people to engage.” ◗◗ This article is an excerpt reproduced with permission from Queensland Disability Network (QDN). For more information, contact QDN on 07 3252 8566, visit www.qdn.org.au or email qdn@qdn.org.au

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Big things afoot Supported Accommodation Innovation Fund (SAIF) and The Deadly Connection Program Aboriginal and Torres Strait Islander Australians experience higher rates of disability than do other Australians. After taking into account age differences between the Indigenous and non-Indigenous populations, the rate of disability among Aboriginal and Torres Strait Islander Australians is almost twice as high as that among non-Indigenous people.

(ABS, 2008).

By any measure, Aboriginal and Torres Strait Islander people with a disability are among the most disadvantaged members of the Australian community. They often face multiple barriers to meaningful participation in their own communities as well as the wider community, facing double disadvantage because of discrimination on the basis of their Aboriginality as well as their disability. The good news is there are some key projects that will make a real difference for Indigenous communities in Queensland.

Supported Accommodation Innovation Fund (Saif) The Wabu Gadun Bulmba Gurriny Mukanji project proposal is a consortium of nongovernment, corporate, Indigenous and nonIndigenous organisations who have developed an innovative model of supported accommodation

both in construction design and service delivery model for Indigenous people with a severe or profound disability.

A shortage of appropriate accommodation has resulted in significant length of stays at Cairns Base Hospital, which isn’t equipped to provide secondary and tertiary care.

The SAIF project will provide supported accommodation for eight clients with severe and profound disabilities. This will provide a more efficient economic cost of care, especially compared to inappropriate accommodation in hospital.

As supported accommodation, the aim is to place clients either back into their community or into the care of existing service providers.

The accommodation will be designed in a culturally appropriate way, and support will be provided in a similar way to reduce the severity and intensity of behaviours. Support will be provided to maintain long-term employment, provide career opportunities, and increase level of education.

Exciting aspects of the project include: • Indigenous design to create the feel of open spaces • Traditional bush food used for both nutritional and medicinal purposes

Crossing the cultural gap

The CEO of Synapse, Jennifer Cullen, recently presented a talk to members of the community sector on building practical partnerships with Aboriginal and Torres Strait Islander people. She encouraged workers from each organisation to ask themselves the following questions . . .

Does your office display Aboriginal and/or Torres Strait Islander symbols of welcome, posters, flags or artwork that was locally developed?

Does your organisation ask people how they would like to be addressed? (e.g. Mr, Mrs, Aunty, Uncle etc).

Do staff members know the local Aboriginal and/or Torres Strait Islander workers who can provide assistance with communication and relationship building?

Are staff members encouraged to attend and participate in important Aboriginal and Torres Strait Islander events?

• Synapse, James Cook University, Indigenous communities, elders and clients of the service tending an Indigenous bush garden and eco-pond (billabong) for food and medicinal purposes.

• An elders reference group providing valuable advice from all aspects of the project • Clients having the opportunity to participate in conservation research an art programs at the local Indigenous art gallery. deadly connection program Mentoring is a relationship which gives people the opportunity to share their professional and personal skills and experiences and to grow and develop in the process. It is based on a mutual trust, respect, openness and willingness to learn and share, and enables us to share experiences, cultures, ideas, hopes and dreams when facing growth or challenges.

FSG Australia and Synapse introduced The Deadly Connection pilot program in July 2011, focussing on personal and professional development within a mentoring framework that benefits Aboriginal and Torres Strait Islander workers and volunteers from a broad range of industries and services.

The benefits of participating in The Deadly Connections Program for Mentors?: • Develop enthusiasm for your role as an experienced employee • Explore workplace skilling perspectives and approaches • Achievement from contributing to your colleague’s development • Develop your mentoring role in a supervised program • Develop your communication and interpersonal skills • Enhance your leadership skills The benefits of participating in The Deadly Connections Program for mentorees?: • Enhance your skills and knowledge • Increase confidence to access further skilling opportunities • Develop career opportunities • Develop your skills and knowledge in the desired areas of growth • Become more motivated and inspired • Create professional and personal relationships to help achieve goals • Developed communication and interpersonal skills and abilities. ◗◗

Have staff members participated in Aboriginal and/or Torres Strait Islander cultural competence and training? ◗◗

1 BILLION WITH A DISABILITY

This staggering statistic is the result of the world’s first ever international report on disability by the World Health Organization (WHO) and the World Bank, so around 15% of the world’s population have a disability; that’s along with the associated poorer health, lower education achievements, fewer economic opportunities and higher rates of poverty. ‘’The clear message from the report is that there is no country that has got it right”, said Tom Shakespeare, one of the report’s authors. “‘’Disabled people do not need to be poor and excluded; they do not need to be segregated. They do not need to be secondclass citizens.’’

Thankfully it’s not all gloom and doom — the report not only looks at the problems, but provides possible solutions for overcoming barriers to health care, rehabilitation, education, employment, and support services. Visit www.who.int to read the full report. ◗◗

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Down the slippery slope

How do you recover from a brain injury when you don’t even know you have one?

In August of 1994, I was working as a surveyor, checking stakes high above the road on a slope of about 60 degrees. When the slope gave way, I tumbled and landed on a paved section of the highway below.

It was about 9.30am and I was alone with no radio, more than two miles from any other human being. I remember the slope moving. I remember my boot catching and I remember falling over backwards. I do not remember the fall.

I was told that I walked to a store a couple miles away and that I arrived about 1:30pm.

I do not remember any of that walk. I do vaguely remember being in a helicopter as they evacuated me.

Looking Good Alicia, my wife, got the phone call at pretty much the same time that I was being loaded onto the helicopter. She arrived at the hospital to find me in what appeared to be pretty good shape. I had a nasty bump on the back of my

17 / B R I D G E M A G A Z I N E

head, a couple of minor bruises on my hip and arm, and a screaming headache.

The doctor diagnosed a concussion and said that it would be at least six months before I could work again. I, of course, was certain that he was wrong and I would be fine in a few days. I was correct in thinking he was wrong, but was way off in thinking I could go back to work in less time. Much of the damage done was permanent, and even now seven years after the accident, there is no medical certainty that I will be able to sustain employment.

My employer and the insurer came up with the theory that I must have faked the accident because there was no way, in their opinion, that I should have survived. I looked too good to be injured, and that was that. The fight with the insurer continued for seven years, and I am still not sure it is over.

Struggling to Work I took a job as a silk screener and graphic artist, which went well for a time, though I had

some difficulties. I was lucky that my new boss, liked me and made some allowances for me. He didn’t know I had a brain injury. He couldn’t have, as I didn’t know realise I had one!

No doctors advised me about brain injury, but I was certain there was nothing wrong. The boss noticed my struggle. I could usually work at a decent pace in the morning, but afternoons were difficult and I would slow considerably. I would forget to do things. I had trouble being consistent with ink delivery into the screens, resulting in either faded or fuzzy prints. I would get dizzy and suffer headaches, My ears rang incessantly, but we blamed it all on the solvents in the inks.

He changed to less irritating solvents but the problems persisted. The boss had to bring on another worker who was able to work at a higher level and with more consistency. Wayne apologized profusely, but he had to let me go.

But I was still sure there was nothing wrong with me.

I bounced through a couple of other jobs quickly (measured in weeks, not months) before I landed a job as a lender at a finance company.

This was promising because it was not physical work. Things started off fine, but as time went on, expectations rose just as they do with any employee.

While simple tasks were not a major issue and I could do anything they asked, as long as they gave me written instructions, I had trouble solving complex tasks. I just couldn’t seem to work out in what order to do things.

Afternoons were still difficult. By the end of a day, I was so mentally drained that I could look at my computer screen and read all the words, but had no idea what they meant. And still, the headaches and dizziness continued.

Searching for Answers & a Neurologist It was four years after my injury when I went to see a different doctor. And another one. And another one. Finally, I found a doctor who listened when I described my symptoms. He was the first one who didn’t try to put words in my mouth. He listened and sent me to see a new neurologist. He had a new opinion that was greatly different. To be sure, I was sent to a third neurologist, and a fourth. The three doctors all agreed that there was something wrong with me, and that further tests were required.

And so tests were ordered. While on the waiting list for these tests, I was fired from my job at the finance company. Along with my job went any disability insurance that I had. The tests confirmed what I was slowly beginning to realise. I had permanent problems stemming from my accident. The results inferred I could not sustain any employment.

I was at once relieved and horrified. Finally, I had proof that I was not lying, but it had come at the expense of me being able to support my family. This was five years after the accident. I tried to re-open my insurance claim and found myself banging my head against the proverbial brick wall. I had no income, and over time began to feel worse and worse about myself as my wife supported both of us.

Holding On My wife, Alicia, has been great through all of this. More than 95% of marriages end in divorce after one of the partners sustains a brain injury, but not ours. Alicia has stood by me through thick and thin, and never wavered in her support. That statement sounds simple on paper, but think about it for a second. She was working and supporting both of us. We had a mortgage, a car loan, credit cards, and all sorts of payments to make — and our income was cut by more than half. She also did all the cooking and cleaning.

For a while, I had sunk to a level where all I did was watch old reruns of MASH and sleep all day. I wanted to do more, but just couldn’t seem to get myself out of bed. Doctors diagnosed me with depression and still, through it all, Alicia was there. She remains here to this day and beyond. She is key to my recovery. She is the reason I push myself. Without her, I doubt I would have cared what happened to me.

Looking Forward I finally realise that trying to return to what I was before that fateful day in August, 1994 is nothing more than an exercise in futility. Trying to be what I no longer could be was driving me into a hole. Striving to be all I could be in the future pulled me up. Instead of looking back, I now look forward.

I am beginning to use tools that I had forgotten I had. I am writing again, and perhaps one day you will be able to read my book. If I work at it, I think I can accomplish that dream.

I am drawing and doing artwork again. I am living again.

I have tried unsuccessfully to re-enter the workforce a few times now, but with awareness of my limitations and with strategies to compensate for them. The insurance board has recognised my claim, so I am receiving vocational services to help me regain a foothold in the workplace. I now realise I may never work full-time again. However, I will work as much, and as successfully, as I can. My goal is to be the best I can be now, not the best I used to be. achievable goals The key is realising that attitude is important, but it is not everything. No success will ever be obtained without it, but accomplishment takes more — work and accountability. I have to set goals that are achievable and I have to work at strategies that allow me to reach those goals. I have to plan how I’m going to deal with the tiredness that comes by afternoon. I have to figure out how to maintain my concentration on a task for more than two hours at a time and how I can normalise my sleep patterns.

Once I discover these things, I have to actually do them. If one item in this list falters, everything fails. But it’s coming more easily now. I will always have the deficits that I have, but I am learning to work around them.

My life changed on that day in August, but it did not end. It took me seven years to learn that, and I am still learning. I hope I never stop learning. ◗◗

New personal story series

Synapse has started a personal story series on Youtube to raise awareness of Acquired Brain Injury in Australia and internationally.

Our first video features an Indigenous Australian, Jo Lake, who has been living with a brain injury for 26 years after being assaulted at only two years of age.

Jo’s story first told her story in this magazine back in December 2008, with facing many challenges such as negotiating the stairs at school, learning to walk again, swimming 25 metres in the local pool, and finally managing to live independently today.

Jo says her foster parents always encouraged her to try her best and never give up. Jo’s philosophy has always been that you can do almost anything others do, and that no matter what your skin colour is — or if you have an acquired brain injury — you can achieve anything if you put your mind to it.

Any child that lives after Traumatic Brain Injury (TBI) through assault seriously battles the odds.

Current statistics say that as many as one in every three children will die as a result of their injuries. For those who recover, as many as 2 in every 3 will live with complex, profound and permanent disability.

Children with an Indigenous background have an even higher risk of injury and death compared with other Australian children.* Watch the video of Jo’s personal story on our Youtube account at www.youtube.com/user/SynapseReconnect

To help launch Synapse to all staff and clients, Jo Lake kindly produced the above painting that was unveiled at a special launch held at Synapse’s central office in Brisbane. Called The Road to Recovery, it symbolises the journey that she has taken, the people who have supported her in her rehabilitation, and the value of willpower. ◗◗ *Australian Institute of Health and Welfare, Key national indicators of children’s health, development and wellbeing: indicator framework for a picture of Australia’s children 2009, Canberra.

Lash and Associates Publishing/Training Inc. specialises in information and books about brain injury, blast injury, PTSD and concussion. This story has been reproduced with their permission from www.lapublishing.com/blog

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Advocacy & impaired capacity Queensland Aged and Disability Advocacy explains the issues behind advocating for someone with impaired capacity QADA identifies people with impaired capacity (dementia, in particular) as a special group needing advocacy support.

What is “capacity”?

“Capacity” and “impaired capacity” refer to terms as defined by the Queensland guardianship regime (within Queensland).

The definition of “capacity” is drawn from legislation that states that “capacity” is to be considered in relation to the specific decision (matter) to be made, and if the person is capable of: • understanding the nature and effect of decisions about the matter • freely and voluntarily making decisions about the matter; and communicating the decisions in some way.

QADA is guided by Queensland laws, including the right of an adult to make decisions as being fundamental to inherent dignity.

Supporting clients with impaired capacity QADA recognises that presentation of capacity can be influenced by medical, personal, physical and environmental factors, and assumes capacity exists until proven otherwise.

Queensland Aged and Disability Advocacy Inc. (QADA) are often asked about the role that QADA plays in providing advocacy support to people with impaired decision-making ability.

Advocating for clients with impaired capacity Our practice is influenced by an adult’s basic human rights – irrespective of capacity. QADA promotes the importance of: • empowering an adult to exercise their rights • making decisions and achieving their potential • being as self reliant as possible, with the least possible interference • the provision of appropriate support with decision-making.

It is not QADA’s role to assess a client’s

capacity; however we follow a process to ensure potential clients do not have their right to access advocacy support compromised by their lack, or perceived lack, of ability to give clear instruction.

The capacity to make decisions can fluctuate or differ according to the decision to be made.

When an advocate meets a person who may have limited decision making abilities, we consider whether capacity is: impaired in all areas, or is limited only to one particular area.

QADA will look at whether the person is able to make a decision regarding the particular matter. For example, a person’s capacity to make financial decisions may be impaired, yet he/she can make lifestyle decisions.

Aged & Disability The legislation dictates the way we view our ability to take direction from a client. The question posed is no longer: “Can we take direction from this person?” but rather “Can we take direction from this person regarding the particular matter for which a decision needs to be made?”

Some issues require a greater level of capacity to give instruction than other issues.

For example, the decision to leave a high care facility in order to live independently in the community will require a higher level of capacity than a decision to address a care matter with a service provider.

Determining capacity If we have any doubts about a client’s capacity, before taking direction an advocate may: • visit the client on several occasions before deciding if we can take instruction from the client • ask if we can speak with one of the client’s health care professionals to gain further insight

• seek advice from the Office of the Adult Guardian.

Substitute decision makers Depending upon the information obtained we may take direction from the client, or we may need to see if someone can give direction on behalf of the client. At this stage, advocates may ask the following questions: • Is there a formal substitute decision maker?

• Is there a current Enduring Power of Attorney (EPA) covering the areas of decision making in question?

• Is there an appointed guardian for this person?

QADA can sometimes take instruction through an informal representative, provided the person is acting in the client’s best interest.

QADA can offer support to this person to advocate on behalf of the client.

If family and friends can not agree upon what is in the client’s best interests (and in the absence of a formal substitute decision maker), a QADA advocate will seek advice from the Queensland Civil and Administration Tribunal (QCAT).

In some circumstances the Adult Guardian may become the substitute decision maker for personal matters and/or the Public Trustee for financial matters.

Family and friends of clients without formal arrangements can apply to the QCAT to become the client’s guardian and/or administrator. A client without formal or informal support, who cannot give instruction, would be referred to the QCAT. QADA acknowledges the complexity of advocating for clients with impaired capacity.

However, we are committed to providing advocacy support to all people in our client group — irrespective of capacity. ◗◗

Queensland Aged and Disability Advocacy (QADA) Inc. If you need advocacy services in Queensland, QADA can support older people, people with a disability, and their carers, to be heard. A not-for-profit community-based Statewide advocacy service, QADA can provide information, education, support and representation to enable people to understand and exercise their rights and their responsibilities. Our service is free, confidential, and client-directed with interpreter services available. Offices are located in Brisbane, Gold Coast, Hervey Bay, Rockhampton, Townsville, Cairns and Mackay.

• Website: www.qada.org.au • Ph: 1800 818 338 or 07 3637 6000 • Email: info@qada.org.au To find advocacy services in other States, please check with the Brain Injury Association in your State.

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Brain injury strategies work!

Everyone has problems from time to time. Some are minor while others are of major concern. However, for someone who has suffered an anoxic brain injury, even the otherwise minor problem magnifies to enormous proportions if compensatory strategies are not used to control the situation.

Since I have been adjusting my life to compensate for my brain injury for many years now, I make use of my compensatory strategies on a regular basis to deal with cognitive problems. Cognitive rehabilitation makes living with brain injury tolerable and enables a more satisfying life.

Larry and I usually ride together if we are going to grab a bite to eat. Due to my lack of peripheral vision, which makes driving a challenge, Larry usually does the driving. On this day, he had been doing some electrical work around the house and was tired, so I offered to pick up lunch at Sonic. He agreed and I was on my way with the list of what to order (another strategy).

When it was time to leave Sonic, my car wouldn’t start. Anyone who is familiar with brain injury is not surprised that my first reaction was panic. “Oh no! – Why is this happening to me? What do I do now?”

Then I took a deep breath and asked myself to pull out the strategy tool chest. After determining which strategies fit the situation and which to use first, I reached for my phone to call Larry to let him know what had happened. He was soon on the way to the rescue with jumper cables. In the meantime, I retrieved my owner’s manual from the glove box just in case it was not just the battery (planning ahead). Rather than becoming emotional, I was trying to figure out how to best solve the problem. That’s a big change from when I had

no strategy to remain calm and develop a plan.

The car did not start with a jump so we had to leave it there overnight while we figured out what needed to be done. I informed the manager of the plan to temporarily leave my car there. He was very understanding and told me he would make sure it was not towed away before we returned.

The next morning, after reading the manual and doing some research on the internet, we replaced a fuse and my car started after another jump. I drove it home and pulled into the driveway just prior to a very cold rain.

Though it was not a pleasant to deal with, there’s always a silver lining to an unfortunate situation. Here’s a few things I was grateful for: We were not together and have two vehicles, so I could call Larry for help.

I had compensatory strategies that helped me remain calm and able to think.

I had my cell phone with me.

I was not far from home.

I was parked in a place where the jumper cables could reach.

I was able to explain things to the manager who was understanding of my dilemma.

We were able to work together to find and correct the problem which was not costly.

We made it back home prior to bad weather.

Be as prepared as possible for the unexpected and always plan ahead for any trip. You never know what challenge you may face when least expected. Compensatory strategies help compensate for what was lost as a result of the brain injury. ◗◗ Beth has been posting to her blog since 2008 after acquiring an anoxic brain injury. You can visit her inspiring blog at http://blog.brain-injury-online.com

Smart phone apps for rehab

The Smart Apps Online Web Resource is a new resource available at www.tbistafftraining.info for clinicians working with patients who have progressive or Acquired Brain Injuries.

This website aims to provide a comprehensive set of resources that clinicians are able to download and use easily in order to help their patients use smart phone technology and smart apps to achieve their goals.

Clinicians in health care settings have begun to use Smart Phones to assist their clients with a range of individualised therapy tasks, as it functions as a telephone, internet service and has multiple applications available for download.

Recent literature indicates a Smart Phone can help compensate for executive functioning and communication problems where traditional devices have been unsuccessful. Benefits have included improved recall, initiation of a desired behaviour or goal, and organisation skills (Wright et al 2001, Blackstone et al, 2007 and Kennedy et al 2008).

The website includes information on the following categories: • Introduction to Smart Phones • Trialling Smart Phones • Smart Phone Applications • Smart Phone Tips and How to’s • Funding for Smart Phones • More information • The Evidence • The Brain Injury Rehabilitation Directorate Project.

The website will undergo changes as new information becomes available and resources are updated.

Feedback and questions are welcomed and can be directed to Emma Charters: Email: PhoneApps@ TBIStafTraining.info ◗◗

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$16.7m boost for Qld services

News in numbers Recent statistics in a new publication by the Australian Institute of Health and Welfare* show remarkable improvements in the lives of Indigenous Australians.

45 78 32 26 517,000

Percentage of Indigenous students doing Year 12 at school in 2009, compared to only 31% in 1995.

Percentage of younger Aboriginal and Torres Strait Islander adults (25-34 years) who completed Year 10 or higher in 2008, compared to only 27% of those aged 55 years and over.

Synapse recently hosted a ministerial announcement of a $16.7 million boost by the State and Commonwealth Governments for home and community care services throughout Queensland.

Disability Services Minister, Curtis Pitt, and Federal Minister for Ageing, Mark Butler, made the announcement at Synapse’s head office on 26 October.

“This is great news for older Queenslanders and people with a disability”, said Mr Pitt. “It’s a significant investment which will mean extra services to respond to the growing number of Queenslanders who need help to live independently.”

Synapse, along with other Home and Community Care (HACC) services, has welcomed the funding as a way to provide more social support, home modifications, transport and respite care. The $16.7 million funding includes: • $10m for HACC vehicle replacements • $4m toward people with specific cultural or special care needs • $1m for extra staff training • $760,000 for home modifications • $100,000 for training on cultural diversity. ◗◗

Art for ABI’s sake

Two talented emerging artists based in Queensland, Slavica Kovacev and Billie Letts, recently held a joint exhibition at the Percolator Gallery located in Paddington Queensland (www.percolatorgallery.com. au). One of the artists has a personal experience of a loved one affected by an Acquired Brain Injury (ABI) which prompted the pair to donate 10% of art sales to Synapse. The joint-exhibition comprised Billie’s photography and Slavica’s series of paintings.

Synapse wishes to thank both artists for their support and looks forward to their next joint-exhibition.

View their work at www.printrooms.com.au/billieletts and www.artcaca.com.au ◗◗

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Percentage of Indigenous households who were homeowners in 2008, up from 26% in 1994.

Percentage of Indigenous households living in dwellings with structural problems in 2008, down from 34% in 2002.

The 2006 Aboriginal and Torres Strait Islander population was estimated to be about 517,000, constituting 2.5% of the total Australian population.

However, there are still figures that clearly indicate there is a long way to go in many areas.

65 2.5 8 1/4 52

Percentage of working-age Indigenous Australians in the labour force in 2008, compared to 79% of non-Indigenous Australians.

Indigenous households were nearly 2.5 times as likely to be in the lowest income bracket as non-Indigenous households in 2008.

The rate of substantiated child protection notifications for Indigenous children was close to 8 times the rate for other children (2008-2009).

Indigenous Australians comprised more than one-quarter of all prisoners as at June 2010.

The Indigenous imprisonment rate rose by 52% between 2000 and 2010.

Visit www.aihw.gov.au/publication-detail/?id=10737418989 for more information or to order the publication containing these statistics.

* AIHW 2011, The health and welfare of Australia's Aboriginal and Torres Strait Islander people: an overview 2011, Cat. no. IHW 42, Canberra: AIHW

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Yarning about brains

by Susan Gauld and Sharon Smith Acquired Brain Injury Outreach Service (ABIOS)

Increasing knowledge, capacity and supports within Aboriginal and Torres Strait Islander communities Supports available to Aboriginal and Torres Strait Islander Peoples with brain injury, as well as their families, have developed and been enhanced by The Brain Injury Project which was conducted in 2006 – 2009 in Far North Queensland. ABIOS recognised the need because referrals to mainstream brain injury rehabilitation services were lower than expected (brain injury affects 0.7% of non-indigenous people, while 2.3% of Indigenous People have a brain injury.*) In 2006, ABIOS partnered with two remote Cape York communities, Lockhart River and Wujal Wujal, to investigate this issue. This two year project was reported in this magazine in December 2008. The outcomes of the consultations indicated a need for: • community education about prevention • education about supporting people with brain injury • culturally appropriate resources and training • sustainable resources and supports.

Further funding in 2008 enabled the Brain Injury Project to be extended for 12 months in the communities of Lockhart River and Wujal Wujal. The focus of this part of the project was on sustainability of project outcomes, resulting in the planning and running of a Brain Injury Round Table involving participants from Lockhart River, Wujal Wujal, Hope Vale and Cooktown in 2009. Participants expressed the benefits of meeting with others from surrounding communities to exchange ideas, knowledge and experiences, and resources, which they could take back to benefit their own communities.

The Round Table facilitated opportunity for future planning to meet the support needs 23 / B R I D G E M A G A Z I N E

of people with brain injury and their families.

This resulted in the group’s recommendations being sent to Apunipima Cape York Health Council, and a business case for future funding of services and supports has been developed in partnership with them.

The need for appropriate resources The project highlighted the need for culturally relevant educational resources about brain injury that could be used across communities in Queensland. This led to the development of a DVD resource, ‘My Community, My Family: Three Indigenous Families Share Their Knowledge of Brain Injury’. The stories on this DVD describe life after brain injury, the changes that occur, the effects on families, how they have coped, and the achievements made.

It is available free of charge from ABIOS, for use in communities and in training health and disability workers.

Hands-on training is the best way The project has been a major learning experience for ABIOS. It has enhanced service delivery to other communities, such as Cherbourg in southeast Queensland, where ABIOS has provided a visiting service since 2002. A brain injury training programme has also been developed and five community health staff trained in a pilot programme in Brisbane and Cherbourg.

The following feedback from the pilot participants was positive, and will provide direction for future programme development: • “We found that the training was appropriate and very interesting” • “Hands-on [training] is the best way” • “We would love to learn more and become facilitators to get the message and train

others in all communities about brain injury; how to cope, support and prevent.”

The following feedback led to further community activity — “We would like to educate the community about brain injury so they have a better understanding of what a brain injury is, and how they can support that person and the family.” In response, a community Performing Arts Workshop was held in partnership with Cherbourg Community Health and Disability Services LAC Programme. “Yarning about Brains” was facilitated by Natjul Indigenous Performing Arts, which resulted in a steering committee being formed to develop supports and improve community knowledge in Cherbourg.

Increasing knowledge about brain injury These examples of community-based rehabilitation show the need for increasing knowledge about brain injury through: • the training of local health and disability workers and community members • the development of local and culturally relevant resources and activities.

Please contact Sharon Smith or Susan Gauld on 07 3406 2311 if you would like to: • participate in the training programme for health and disability workers in 2012 • obtain information about community-based rehabilitation in your community • obtain more information about ABIOS DVDs. ◗◗ *O’Neill, M. in Kendall, E. and Marshall, C., ‘Factors that prevent equitable access to rehabilitation for Aboriginal Australians with disabilities: the need for culturally safe rehabilitation’, Rehabilitation Psychology, 49(1), 2004, pp 5-13

Handling stress Stress is a normal part of life but our ability to manage it can suffer after a brain injury Stress also occurs in response to ongoing daily hassles such as traffic, noise or inconsiderate people. The body responds to stress with the ‘flight or fight’ response in the central and peripheral nervous system. This involves a series of chemical changes which prepare people for a stressful event.

Imagine the body’s reaction to the sound of a loud siren late at night outside a person’s home.

During this stressful event the body becomes mobilised into action via the brain’s messages.

Changes may include increased heart rate and blood pressure, sweating, dilated pupils and extra sensitive senses such as hearing and vision.

While the ‘flight or fight’ response is vital for survival, if this occurs too often to the body as a result of chronic stress, there can be negative effects such as reduced protection from disease and infection, hypertension, heart, liver and kidney conditions and psychological disorders.

Stress much worse with abi In the vast majority of cases people find it much harder to deal with stress after a brain injury. Coping with stress uses many different cognitive functions of the brain such as recognising the symptoms, identifying causes, formulating a coping strategy, maintaining control of emotions appropriately and remembering these techniques. A brain injury can dramatically affect each of these areas resulting in very little ability to cope with the normal stresses of everyday life. Family members can find this hard to realise and believe a person is simply whingeing, being overemotional or immature.

A brain injury has been likened to having a couple of lanes closed down on a six lane highway. While the traffic is light there is little disruption to the normal flow. But once the traffic reaches a critical point those closed down lanes suddenly result in traffic at a standstill backing up for kilometres. The same applies for a person with a brain injury – they can often handle a light load of stress, conversation, noise or workload, but at a critical point they can no longer cope and the stress sets in.

stress management strategies VISUALISATION Get comfortable, scan your body for tension and relax the muscles. Use your imagination (e.g. pleasant daydreams or memories) to will yourself into a relaxed state. . Focus your imagination using all five senses, then use affirmations such as repeating ‘I am letting go of tension’; or ‘I am feeling peaceful’.

Practise using visualisation three times a day for a few minutes or longer.

SLOW BREATHING TECHNIQUES See if you breathe mainly through the chest or through the stomach. Aim for the latter and breathe deeply. Do this several times a day, or as needed e.g. when feeling stressed, angry or anxious.

PROGRESSIVE MUSCLE RELAXATION Identify each muscle group and the difference between tension and relaxation. The four groups are: • Hands, forearms and biceps • Head, face, throat and shoulders • Chest, stomach and lower back • Thighs, buttocks, calves and feet.

Tense muscles for five to seven seconds and relax for 10 to 15 seconds.

Aim for two 15 minute sessions each day.

Understanding & Managing Stress The first step to reducing stress is to become aware of the major sources of stress that exist in their life. The person may like to keep a stress awareness diary for a few weeks that lists the date, time, event, severity, symptoms, and coping strategies they used to ease the situation. The second step is to categorise different stressful situations as follows: Controllable – Uncontrollable Important – Unimportant This can help a person to stand back from their situation in order to view it more clearly and objectively. coping skills required These are Awareness, Acceptance, Coping and Action skills. Some skills may be more useful in certain situations. Each skill may be explained better using a situation which people are often faced with after brain injury. To illustrate these skills, let us use the example of a person who is stressed because they have an appointment for a neuropsychological assessment.

Awareness skills This is getting a clearer understanding of the situation and how it affects the person e.g. the person can find out what a neuropsychological assessment involves and its purpose.

Acceptance skills Acknowledging the stress and being realistic about how it affects a person’s lifestyle e.g. what aspects are controllable/uncontrollable or important/unimportant.

Example: Recognise that the assessment needs to be conducted and that it will probably be quite tiring and demanding. The person may not be able to control when and how long the assessment is but they can manage their thoughts and reactions to the assessment.

Coping skills Prepare to cope with the stressful situation by learning various strategies. Identify what changes a person can make to control the situation and reduce stress levels.

Example: Using Self-Talk to develop a constructive outlook towards the assessment.

Action skills Actively making changes to counteract or reduce the level of stress. Try the strategies listed below and remember to constantly evaluate each one in different situations. ◗◗ This is an excerpt from our comprehensive publication, Acquired Brain Injury: The Facts. It is available free of charge within Australia by post, or download as a PDF from our webdsite at www.synapse.org.au

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Pros and cons of returning to work

by Gerowyn Hanson “To return to work or not to work?” is a question asked by many people with ABI (Acquired Brain Injury) who have taken time off or resigned. Based on my own experience, I’ve compiled a list of impairments which could impact on this decision.

My Situation During my travels overseas last year, a close friend asked for some help in his business.

His trade involves a lot of travel and it’s a field in which I am knowledgeable. I decided to volunteer, thinking it would be fun and a great chance to see the country. This was seven years after acquiring my brain injury through an accident, preventing a return to my former career.

An Acquired Brain Injury (ABI) can leave the victim with physical, psychological and neurological impairments. Pain, immobility, short-term memory loss, anxiety attacks, fatigue, lack of social skills and loss of selfconfidence are just a few of the things that can complicate a return to work.

I was confident these disabilities could be overcome by things like pain-killers, writing reminder notes, and getting an early night’s sleep. Some of these remedies worked; others were not so successful for me personally.

The following is what I found out about my own limitations, and how I sought to overcome the challenges. I do not, however, want to paint a Pollyanna smile on my face and deny that there were difficulties. As such, I urge anyone contemplating a return to work to seriously consider the consequences to your physical and psychological health.

Pain Pain and immobility caused by standing, sitting all day, or carrying heavy objects might not necessarily be alleviated with pain-killers, even powerful prescription medication. It is not always possible to massage away stiff joints, especially when one is busy or constantly on the road. Soft tissue damage can restrict movement, limiting the type of duties required for a job. Headaches, especially migraines, are often debilitating and require time off. In the workplace, though, it is usually unfeasible to take breaks whenever you want them. Pain can also prevent a good night’s sleep which is needed to work efficiently.

Possible solutions?: 25 / B R I D G E M A G A Z I N E

• Make sure your employer is clearly aware of your physical limitations, and understands you might require many more regular short breaks or even fewer working hours than non-injured workers.

• Ask for a chair that suits your requirements, or extra cushions so you are adequately supported while you work.

• Invest in prescription orthotics or a pair of shoes that give arch support if you are on your feet for long periods.

• Find the phone numbers of local physio- or remedial massage therapists. Your employer might even allow a mobile massage therapist to visit your place of work.

• See your doctor about prescription pain killers if off-the-shelf analgesics do not help.

Memory In a dynamic workplace it is not always practical to jot down reminder notes throughout the day, as a busy job might require immediate attention to other matters. Short-term memory loss can seriously compromise one’s efficiency in the workplace, particularly if important messages are not passed on or certain procedures aren’t carried out in a strict order. Forgetfulness is also exacerbated by sleep disorders. Problems with poor memory can negatively impact on the self-confidence of a person trying to re-enter the workforce.

Possible solutions?: • Either make a step-by-step list of instructions for job procedures and operating equipment, or ask your employer to provide you with one.

• Label drawers, shelves, boxes etc. that need to be accessed for office supplies, goods or equipment.

• Have a whiteboard or Post-it notes handy to jot down messages, or ask people to call back.

• For sleep disorders, read below.

Social Skills The constant engaging and disengaging with people as you meet and greet them throughout the day becomes very draining. A brain injury is likely to reduce concentration, making it difficult to sustain conversations for long. It therefore becomes progressively difficult to process information and respond accordingly.

Fatigue soon sets in and mistakes are made. I describe fatigue as being similar to someone pulling the plug out of my brain. Like a computer, once it shuts down, I can no longer

process information or think on my feet, making me appear “spaced out” in conversations. Social ineptitude can affect confidence, turning into a vicious cycle as one begins to avoid interaction with others. Anxiety phobias can develop, leading to a range of serious psychological disorders. It might become impossible for some people with a brain injury to work in certain environments where contact with people is paramount to the success of the business.

Possible solutions?: • Ask if you can be excused from contact with the public.

• Find out if it is possible to put a sign on the counter stating that, “we employ people with a disability” which might soften any apparent mistakes or social gaffes.

• As mentioned in the tips above, see if you are able to take numerous short breaks to allow your brain to be refreshed.

Fatigue and Sleep Disorders Fatigue and lack of sleep disturb memory, social skills, concentration and efficiency, all of which cause mistakes. This can be devastating for business, causing financial loss, damage

effective technique resulted in my first fullnight’s sleep and fewer anxiety attacks with less intensity).

• Massage, meditation, relaxing with friends or pursuing hobbies are ways of reducing stress.

• Maintaining a healthy diet, regular exercise and a good night’s sleep are also recommended.

• CBT (cognitive behaviour therapy) is another successful method which uses self-talk to challenge negative thoughts.

In CBT, you can be trained by a qualified medical professional or teach yourself through interactive websites. Some research programs at universities periodically enlist volunteers for treatment. These researchers teach skills which can be helpful. It is important however, to remember that for CBT to be successful, you must do the homework or carry out the practical assignments.

to reputation and embarrassment for all. It could also negatively affect self-confidence, exacerbating psychological disorders.

Possible solutions?: • Any of the previous suggestions might help.

• Getting a good night’s sleep can be assisted with melatonin, a natural hormone which regulates our sleep/waking patterns.

• Prescription pain-killers might also be needed for restful sleep.

• Asking your employer for flexible working hours or a later starting time might give you the chance to recover from a bad night.

Anxiety, PTSD, and Stress Social or other anxiety disorders, including PTSD (post-traumatic stress disorder), can be so debilitating they are capable of causing the victim to display shockingly dysfunctional behaviours. An anxiety attack is very confronting for anybody who has never witnessed one, and worrying for loved ones who have. Bouts can happen anytime, caused by a number of external or internal triggers. They are complex and irrational. A panic attack cannot simply be solved or cured by trying to talk a person out of

one, except perhaps by a medical professional with specific training. The sufferer might become extremely agitated or worse, cowering in a foetal position while reliving some disaster which occurred in the past.

Often the victim experiences an overwhelming and urgent need to get out and leave the location. This is usually caused by an irrational fear that some impending doom is about to strike or has already befallen a loved one elsewhere. A panic attack in the workplace could have a serious impact on other staff and the business. Experiencing such a debilitating mental disorder in front of others can critically cripple the self-confidence of the sufferer. Accumulating stress from this, together with other impairments discussed above, only compounds problems.

Possible solutions?: • Some prescription medications are able to keep panic attacks under control.

• EMDR (eye movement desensitisation and reprocessing) therapy is often effective for trauma-related disorders ( I found a weeklong series of this bizarre but

My personal experience Helping my friend in his business presented me with many challenges. I liked the work and travel, and was happy to be using my skills.

Nevertheless, I was confronted with a range of issues with pain, memory and anxiety which limited my capacity to work effectively. Had the business not been owned by an understanding friend, I doubt I would have been kept on beyond the first day. There was eventually a huge toll on my physical and mental health when a variety of stressful factors triggered a sequence of serious illnesses. It all necessitated a lengthy period of recovery in bed, coupled with large medical bills. As stated at the beginning, I do not wish to put on a Pollyanna face and deny the effect work had on me, even in a voluntary role. Despite trying all the suggestions above, the impact of my disabilities on my health has shaken my confidence in being a reliable worker, but I’m glad I had the experience.

By all means, if you are still young enough and would like to work again, you should try.

Bear in mind some of the suggestions listed here, but pace yourself. Like me, you might first want to work as a volunteer. This would give you a better idea of how your particular disabilities would impact on your chances of permanent employment. If things don’t work out, don’t see it as a failure. At least you will have some idea of what you can or cannot do. Hopefully your experiences will lead to a positive outcome.

Happy job-hunting! ◗◗ USEFUL ORGANISATIONS ANU: www.anu.edu.au; www.psychology.anu.edu.au/ Research_Areas/ Beyond Blue: www.beyondblue.org.au Synapse: www.biaq.org.au Centrelink: www.centrelink.gov.au Lifeline: ring 131114 or visit www.lifeline.org.au Macquarie University: www.psy.mq.edu.au MoodGym: moodgym.anu.edu.au 26 / B R I D G E M A G A Z I N E

Erin Brockovich in Synapse vids

BIN looking for a change?

Working together for a better future after a brain injury

Synapse was recently honoured to host a question and answer session with the famous Erin Brockovich, courtesy of Shine Lawyers who represent many clients with brain and spinal cord injuries.

For those of you who have not heard of her, Erin Brockovich is the legal researcher made famous for her work in bringing about one of the largest class action cases against a major US Company. The company had contaminated a community’s water supply and in doing devastated the health of local families. Erin engaged effectively with the community and assisted in collecting the crucial evidence the case needed. In doing so she made history and her life was made into a film starring Julia Roberts.

During the Q&A session Erin shared with our gathering the fact that her life may also be impacted by Acquired Brain Injury (ABI) and how she struggled with poor short-term memory and other issues.

We have now posted videos of Erin’s talk on Youtube: • Erin Brockovich - Justice, disability & brain injury • Erin Brockovich - the implications of head trauma • Erin Brockovich - memory problems & strategies • Erin Brockovich - legal action, the media & injustice.

You can either search Youtube for the above titles, or just go to our Youtube account for all our videos at: www.youtube.com/user/SynapseReconnect You can find other videos too such as personal stories, questions and answers with rehabilitation specialists, and the BANGONABEANIE brain injury awareness videos. ◗◗

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Synapse recently facilitated the first meeting of the Brain Injury Network - Far North Queensland (BIN FNQ).

So what is a BIN? A Brain Injury Network is a collaborative group working strategically to meet the needs of people impacted by Acquired Brain Injury (ABI). It does this by sharing information, networking, keeping up-to-date about activity, and having the opportunity to collaborate if and when the occasion may arise.

So what is a Brain Injury Network?

A BIN provides the means through which organisations and individuals meet regularly so that they can stay informed about the services and other activities available in their area. A BIN facilitates opportunities to exchange information, fact-find, and identify opportunities for collaboration with likeminded individuals and organisations.

A BIN already meets regularly in Brisbane, and involves participation from around 50 ABI stakeholders. After consulting with all of their stakeholders from across Queensland, Synapse believed that much benefit could be gained by facilitating a similar group in Far North Queensland.

Synapse currently facilitates the BIN meetings in Brisbane, and will now also assist by facilitating the BIN FNQ in its early stages.

The first meeting of the BIN FNQ was held on Friday 14th of October in Cairns and brought together 18 local Acquired Brain Injury stakeholders (both individuals and organisations (from the private sector, government and notfor-profits).

The first meeting of the Brain Injury Network FNQ involved participants deciding on the form and function that they would like their group to take in its early stages, they also identified the kinds of projects and/or activities that the group may like to pursue.

What can a Brain Injury Network do?

A BIN can: • provide the seed from which stakeholders can establish and grow their own collaborative group, shaping it to suit the needs of the stakeholders and community in their area • provide the means through which stakeholders regularly meet and network • provide opportunities to share knowledge and find information • provide the means to keep up-to-date about services and organisations active in the area • foster collaboration on projects and other activities • provide the means to cultivate long-term working relationships between stakeholders.

Why form a Brain Injury Network?

Currently in Queensland the range of services available to assist people impacted by Acquired Brain Injury (ABI) is not sufficient to satisfy the growing need for services. This need and lack of services is amplified in rural and remote communities. Though many people are impacted by ABI, general awareness and understanding about the condition is poor.

Synapse believes that Acquired Brain Injury is a national health issue. The impacts of ABI on individuals, their families, their support networks are far-reaching. This community-

Synapse Training in Tasmania

With the financial support of the MAIB (Motor Accident Insurance Board Injury Prevention and Management Foundation), Synapse and the Brain Injury Association of Tasmania (BIAT) have partnered to provide a training and awareness project across Tasmania. This project will comprise of a series of 42 specifically tailored workshops developed and delivered across the State by clinical neuropsychologist Mark LaMont. It will assist services, community groups and individuals in the community to identify, understand and respond to the complexity of issues surrounding Acquired Brain Injury (ABI). In 2008 the Australian Institute of Health and welfare revealed statistics showing that the prevalence of ABI in Tasmania is 2.2% while it is only 1.8% across Australia.

wide impact therefore requires a broad community response. By actively participating in a BIN, participants have the potential to identify ways to share resources and skills.

Who can join?

Any organisation or individual can join the Brain Injury Network. Anyone impacted by, or concerned with, the wellbeing of Queenslanders impacted by ABI could benefit from taking part in a Brain Injury Network. Examples include people with an ABI, their supporters/carers, rehabilitation therapists, members of not-forprofit organisations, government representatives and local business people — basically anyone willing and able to play a part.

How much does it cost?

Membership is free; all it takes is an investment of your time and attendance.

Interested organisations and individuals can join just by registering their interest. Helping out with in-kind assistance such as providing a space occasionally to support meetings or providing afternoon tea won’t hurt either.

What form does a BIN meeting take?

Acting as facilitator, Synapse puts forward a premise for commencing the group and offers the network all resources it can make available. The BIN model is then changed by participants to meet the needs of the community and the needs of participating stakeholders. Participants/stakeholders decide on the group model that suits them best, its structure, frequency of meetings, format and function.

In Brisbane an in-person Brain Injury Network meeting occurs quarterly, with each meeting taking about one hour. Meetings take place in one stakeholder’s boardroom (avoids hiring a venue) with the following meeting format: • Brief introductions around the group • Overview of previous minutes • Guest speaker (usually 30 minute long, participants choose speaker and topic) • Information sharing session (participants take turns to share news) • updates on relevant activity and news • Confirm the next meeting (participants can distribute publications and flyers to peers) Feedback from BIN members “The BIN meetings provide me with the opportunity to liaise with other professionals who work with individuals experiencing brain injury, and have been a source of invaluable information on working with brain-injured clients and all that this entails, including ways to tailor counselling treatments, dealing with public trustees, ability to consent, advanced health directives and more.” – Amy Johnston, Clinical Team Leader, DRUG ARM Australasia “I was not aware of all of the various diverse groups [ABI stakeholders] until I attended BIN meetings, and they [in turn] were unaware of an active Aphasia Association in southeast Queensland. BIN meetings have allowed me to interact with other brain injury groups”. – Peter Stuart, Aphasia Association Queensland Contact Synapse on 07 3137 7400 or email info@synapse.org.au to find out more about Brain Injury Networks.

These specifically tailored education/training sessions will cover: • Introduction to Acquired Brain Injury • Working with people with ABI: Understanding and responding to behaviours of concern • Dual Diagnosis/Co-morbidity • Children/Young People and ABI. Through its own research, the Brain Injury Association of Tasmania estimates that at least 2,500 Tasmanians will acquire an ABI each year.

For more information email Synapse Training: training@synapse.org.au ◗◗

Closing the gap Closing the Gap is a commitment by all Australian governments to improve the lives of Indigenous Australians, and in particular provide a better future for Indigenous children. The key targets are Indigenous life expectancy, infant mortality, early childhood development, education and employment.

The strategy has been agreed through the Council of Australian Governments (COAG), the peak intergovernmental forum in Australia. COAG brings together the Prime Minister, State Premiers, Territory Chief Ministers and the President of the Australian Local Government Association.

Closing the Gap is linked to a wider reform of Commonwealth-State financial relations. COAG’s national agreements and partnerships, in areas such as education, housing and health, have a clear focus on overcoming Indigenous disadvantage.

This is a cross-community effort. The corporate, NGO and philanthropic sectors are also important to assisting in closing the gap and finding sustainable solutions to long-standing problems. ◗◗

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Building Products & Equipment In Housing Tips from LifeTec for a safer and more accessible home

The Australian Standards for Housing Design and the development of building products have long recognised the needs of people with a disability. Manufacturers are producing an increasing range of equipment for people with disabilities, the elderly and carers, to make life easier.

Standards provide guidelines for designing accessible environments. For example, they illustrate zones for mounting grab rails and provide a range of preferable bench heights. The standards, however, do not provide a simple formula that can be used with any person in any home. Individual solutions require thorough consideration of the person’s needs, now and in the future. A collaboration between builder and/or architect, occupational therapist, the individual and their carers will lead to a cost effective long-term solution to suit all parties.

adjusted to the correct height for the person. If the shower is over the bath, a bath board can be used to enable sitting while showering.

A raised bath board may enable a person to sit first, then lift their legs over the edge of the bath, possibly eliminating the need for rails or non-slip products.

The shower should be screened by a curtain hung on a continuous curtain rail. Using a weighted curtain helps prevent it from getting in the way in the shower. Slip-resistant tiles or vinyl are used on continuous shower floors. If there is a shower tray on a flat slab on the ground it can be less expensive to install a ramped shower tray instead of excavating the slab.

A handheld shower is helpful for a person who showers when seated or for a carer to assist.

Some come on a grab rail with height adjustable bracket to hang the shower head on.

RAILS Grab rails are commonly used to assist individuals to transfer in or out of the shower and bath, on or off the toilet, and to stand in the shower. The Australian Standard for Design, Access and Mobility* provides guidelines for the suggested placement of grab rails. Ready-made Australian Standard compliant rail systems can be purchased; however these may not be suitable for an individual’s particular needs or may not fit the existing environment. Alternatively, modular grab rails can be custom made for any location and any length.

Floor-mounted grab rails can be used where the wall is too far away from the toilet to provide a position of strength for the person getting on or off the toilet. They are also useful where wall structures will not support grab rails.

BATHROOM LAYOUT Consider having a combined bathroom and toilet. The ideal is to have free space beside the toilet with a shower that is open on two sides, continuous and level with the bathroom floor.

Depending on the layout, and the features of storage and vanity, a 1900mm x 2400mm floor area is sufficient.

THE SHOWER & BATH The Australian Standards recommend installing wall-mounted shower seats with support legs to the floor. Freestanding shower seats are another option though. These seats should have non-slip feet, and should be 29 / B R I D G E M A G A Z I N E

TOILETING People with very short limbs or those with very limited upper limb function can clean themselves after toileting using a bidet. Fully plumbed bidets which replace the toilet are available along with less expensive removable models.

For those who cannot manage conventional taps, including long lever quarter turn taps, a sensor tap can provide the solution. Water is turned on/off by passing a body part in front of a sensor switch. Alternatively, there are taps that can be turned on/off with the person’s foot, knee or elbow.

GETTING IN & AROUND THE HOUSE Ramps may be required to enable access to or within buildings. The Australian Standard specifies recommended gradients and other features of ramps to improve access in public buildings or environments. These recommended gradients could also be used in a private dwelling as best practice.

Threshold ramps are used to bridge the change in level between two adjacent floors, usually when a door separates the two floor levels (as in a patio or verandah). Ready made adjustable threshold ramps can be purchased, or alternatively suitable threshold ramps may be custom made. For larger rises, prefabricated modular AS compliant, ramp systems may be an option.

Portable ramps are also available which can be used over small steps and/or when renting or travelling.

DOOR FURNITURE For individuals with limited dexterity, a sliding indicator bolt may prove easier than a conventional turn indicator door latch.

If standard door knobs are troublesome consider replacing them with lever handles or additional grips to the existing knob.

Electric door openers are also available for individuals who are unable to use knobs or lever handles. These can be sensor beam activated as they are in shops, or activated by pushing a simple large switch with any body part.

NEED TO KNOW MORE? Telephone, fax or email your enquiry to obtain further information from one of the therapists about products. Alternatively, you can make an appointment to trial the equipment at our display centres or through our outreach service. ◗◗ * The Australian Standards are generally only considered to be the minimum guidelines. For best practice, research the range of quality guidelines and resources available.

Surviving in remote communities

“Isolation and distance present challenges in areas such as sourcing and obtaining supplies and materials, servicing remote clients, maintaining and gaining knowledge about equipment, and networking with other professionals” (Barnes, 1999:7). Below are some ideas and considerations that may be helpful when prescribing equipment to individuals in remote areas: Consider maintaining a list of assistive technology that has been previously prescribed in the region. This may allow sharing of equipment for trials, as well as generating information regarding maintenance requirements and issues for the particular equipment.

Where appropriate, try to stay with the same or similar equipment. This may prevent confusion amongst carers/service providers and improve their confidence regarding the set up and correct use of the equipment. It may also reduce confusion regarding maintenance requirements.

When prescribing, be aware that some homes may not have a reliable power source or an adequate water supply. This is particularly important when considering hoists, powered pressure care mattress, electric beds, shower

hoses or water lifts. Consider non-powered options when appropriate.

Where possible spend time with clients, carers and health workers to ensure they are confident with the set up and correct use of the equipment.

Provide written, culturally appropriate instructions, with illustrations to carers. This will provide a future reference if the equipment prescriber visits infrequently. This may also help to reduce abandonment of equipment due to the client or carer being unsure about setting up or use of the equipment.

Where possible prescribe equipment which does not rust. Stainless steel frames do not rust but tend to be heavy.

Where possible, opt for equipment with sealed ball bearings. This will prevent grime and dirt clogging up in the bearings.

Solid tyres are also a good option where a wheelchair is to be used outside. Wider than normal tyres may also be an option if the user will be travelling over sand or softer surfaces.

Rigid frame wheelchairs also tend to last longer when used on rough terrain.

Consider equipment with fewer moving parts as these tend to have longer life.

Think about access to maintenance when ordering equipment. Regular maintenance is essential in preventing premature breakdown of equipment.

Learn about general equipment maintenance.

LifeTec sells an ‘Equipment Maintenance and Repairs’ booklet covering basic maintenance which may be of assistance. LifeTec staff may also be able to provide an equipment maintenance and repairs in-service when visiting your area.

Try to form links with local trades workers/ community groups who may be able to assist with general maintenance.

Consider if mounting of equipment may be an option. This may prevent equipment from being removed or lost. Remember however, that some individuals will have specific needs for portable equipment.

NEED TO KNOW MORE? Telephone, fax or e-mail your enquiry to obtain further information from one of the therapists about products. Alternatively, you can make an appointment to trial the equipment at our display centres or through our outreach service. Phone LifeTec for further details. ◗◗

LifeTec is a not-for-profit, non-government Queensland organisation providing professional information and advice on assistive technology. LifeTec assists a wide range of people who wish to remain independent in their homes for as long as possible, as well as family members, children and adults who are living with a disability or supporting a person with a disability. Services include individual consultations, free community talks, displays and interactive workshops for health professionals. These services are delivered by health professionals from our Brisbane or Townsville Centres, or throughout rural and remote Queensland as we visit each region during the year. Our health professionals are available six days a week (Monday to Saturday) to assist any caller or visitor. For more information contact 1300 885 886 (Queensland only), email mail@lifetec.org.au or visit www.lifetec.org.au

independent living centres in other states ACT SA VIC

Ph: 02 6205 1900 Website: www.health.act.gov.au/ilc Ph: 08 8266 5260 Website: www.disability.sa.gov.au Tel: 03 9362 6lll Website: wwwyooralla.com.au

NSW TAS WA

Ph: 02 9890 0940 Website: www.ilcnsw.asn.au Tel: 03 6334 5899 Website: www. ilctas. asn. au Tel:08 93Bl 0600 Website: www.ilc.com.au 30 / B R I D G E M A G A Z I N E