IN THIS ISSUE:
Your Rights, Your Choice, Advocacy & Independence
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Quality of life A better future for those with a disability
BRIDGE VOLUME 14 - March 2014 ISSN 1448-9856 General Editor: Contributing editors: National Development Manager:
Barry Morris Alice Corcoran Jessica Irons Glen Farlow
Synapse PO Box 3356 South Brisbane 4101 P: 61 7 3137 7400 F: 61 7 3137 7452 E: email@example.com W: http://synapse.org.au
Difficulty with making decisions Advice from Drs Bateman & Evans
The Bridge is the quarterly magazine produced by Synapse, an organisation dedicated to improving the quality of life of people living with and affected by Brain Disorders. Published nationally, internationally, and online, it features practical strategies, current news and research, and personal stories. We welcome contributions and news, especially from academics, community groups, other organisations or those who have personal experience to share.
Support needs of carers Strategies for coping as a carer
Advertising rates available on request. VISUAL DIFFICULTIES: Visit 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. Synapse 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.
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03 Advocacy and the NDIS
Ongoing need for advocacy services
05 Quality of life
A better future for those with disability
07 Successful advocacy
A do-it-yourself guide
09 Living next door to Alice
When neighbours become enemies
11 Difficulty with making decisions
Advice from Drs Bateman & Evans
13 Adapting your home
Easier living after acquiring a disability
15 Support needs of carers
Strategies for coping as a carer
17 Coping with memory problems
Solutions for a common problem
19 Attention problems
Often confused with memory issues
20 Returning to work
Handy tips from Max Employment
21 Easy targets
Gerowyn Hanson on the invisible disability
22 How long with these problems last?
A guide on recovery from a brain injury
23 The forgotten survivor
Carers & family are sometimes forgotten
24 Young people in nursing homes
A serious issue needing solutions now
25 My adult child has a brain injury
Information for parents from ABIOS
27 Never say never
Hope for those with a severe brain injury
29 National Disability Insurance Scheme
Effectiveness, efficiency, and reconnection
30 Living alone with dementia
Tips on maximising independence
bridging THE GAP Jennifer Cullen, CEO of Synapse
Choice and Control Change is inevitably a challenge for everyone, though depending on your personality or coping strategies, it challenges us for different reasons. For some it breaks what are our normal habits or routine, while for others, the challenge lies in the personal test to maximise the opportunities it creates. Ultimately, the issue for all of us is that change leads us into the unknown. But change also revolves around a choice; a personal decision to take action on one thing, or another. It’s this choice that becomes the focal point, and gives us control over how we live our lives. What if it isn’t a choice, but a human right? And what’s the difference?. Human rights are fundamental principles and freedoms given to every person by virtue of them being human i.e., they cannot be given to someone, nor can they be taken away. They are the rights we all expect as members of modern
society, such as dignity, equality and autonomy. So, if we cannot take these rights away, why do we hear about human rights issues on the news every night? People with a disability and their families are often faced with a range of barriers including, but not limited to, accessibility, finance, employment, education, medical services, and transport. Brain Disorders can result in a range of complex behaviours. Due to the invisible nature of the disability, and the lack of understanding in the community, clients are often subtly excluded from community engagement, “for the safety of the community”. This is a clear example of human rights abuse, and an approach that is rarely safer, easier, or cheaper… just perceived as such. Instead of using client-based planning and working with local service providers to manage
behaviours and create relationships, the client is excluded altogether. This edition of Bridge will examine these human rights, the discrimination that people with a disability face each day, and the advocates who work to uphold people’s right to choose. Change is coming, whether we like it or not. Many national advocacy services are currently being defunded, and the pending National Disability Insurance Scheme (NDIS) will involve a systemic change to our advocacy systems. What will be our new reality, and how do we ensure that everyone has “choice and control” over their lives? Jennifer Cullen CEO of Synapse
AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS QLD QLD QLD AUS NSW VIC TAS WA SA NT
Synapse ABIOS (Acquired Brain Injury Outreach Service) Headway Gold Coast Brain Injury Australia Brain Injury Association of NSW BrainLink Services Brain Injury Association of Tasmania Headwest Brain Injury Network of South Australia Somerville Community Services
T: 07 3137 7400 T: 07 3406 2311 T: 07 5574 4311 T: 1 800 BRAIN1 T: 02 9868 5261 T: 03 9845 2950 T: 03 6278 7299 T: 08 9330 6370 T: 08 8217 7600 T: 08 8920 4100
E: firstname.lastname@example.org E: email@example.com E: firstname.lastname@example.org E: email@example.com E: firstname.lastname@example.org E: email@example.com E: firstname.lastname@example.org E: email@example.com E: firstname.lastname@example.org E: email@example.com
www.synapse.org.au ww.health.qld.gov.au/abios www.headwaygoldcoast.org www.braininjuryaustralia.org.au www.biansw.org.au www.brainlink.org.au www.biat.org.au www.headwest.asn.au www.binsa.org www.somerville.org.au 2 / BRIDGE MAGAZINE
Advocacy & the NDIS The National Disability Insurance Scheme will not wipe out the need for advocacy
There are many definitions of advocacy and much debate exists regarding which one is the most appropriate to use. Having a definition of advocacy is necessary so that we have something to refer to, to check against and to encourage discussion about what we are doing. What is advocacy? Advocacy is speaking, acting and writing, with minimal conflict of interest, on behalf of the sincerely perceived interests of a disadvantaged person or group to promote, protect and defend their welfare and justice by: • being on their side and no-one else’s • being primarily concerned with their fundamental needs • remaining loyal and accountable to them in a way which is emphatic and vigorous and which is, or is likely to be, costly to the advocate or advocacy group. The NDIS The Commonwealth has made substantial
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in-principle commitment to the rights of people with disability through the National Disability Insurance Scheme (NDIS). This scheme will improve the lives of many people with disability, as people with a disability experience disadvantages in education, health, workforce participation and access to justice. The NDIS offers an insurance solution for the provision of disability supports, but the opportunities the NDIS presents will generate more unmet need for advocacy. For example, participation and engagement in the workforce, education, recreation, tourism and in community life will not always be welcomed, or run smoothly. Many people with disability will manage those transitional challenges themselves, but many others will need advocacy to secure the rights the Commonwealth has endorsed. Advocacy & the NDIS It is important that the Australian Government continues to provide funding for general advocacy by non-government
organisations, with no involvement by the NDIS or bodies it funds. This will reduce the potential for conflicts of interest, and advocates must be able to offer criticism without the possibility of sanction by their funding body. Independent advocacy, provided by notfor-profit organisations, must be made freely available to participants in the NDIS. It would be unfair to expect a person to pay for independent advocacy out of their individual budget, especially when their concerns relate to the scheme itself and the services provided through the scheme. The allocation of funds should take into account the costs of training and workplace development, raising public awareness and the provision of independent advocacy in a variety of forms. Non-legal independent advocates can assist people in addressing issues without the need for legal intervention; which is likely to save considerable time, anxiety and expense.
Raising awareness of the availability of independent advocacy will help individuals and organisations to become more accountable for their actions, while providing a safety net for the people participating in the scheme. Human rights, policy & legislation The Commonwealth has signed international covenants that offer specific protections to persons with disabilities, including the Universal Declaration of Human Rights, the Convention on the Rights of the Child, and the Convention on the Rights of Persons with Disabilities (CRPD). In principle, every Australian has human rights but they need to have the backing of the law and also be enforced when needed. We do not yet have mechanisms for the enforcement of those rights at every level of government. The Australian Commonwealth has also created legal and policy benchmarks that underpin the rights of people with disabilities. The Commonwealth enacted a Disability Discrimination Act 1992, created a Human Rights Commission, and appointed a Disability Rights Commissioner to raise awareness of disability issues, empower people to challenge inequities in treatment and promote the human rights of people with disabilities. However, despite Australia’s human rights framework and despite the funding of disability-specific advocacy, people’s human rights are still violated and their supports are insufficient to guarantee a good life. Facts of disadvantage People with disability are overrepresented in the criminal justice system, and also face barriers in finding employment, accessing services, education and suitable housing, health and social care services. People with disabilities have been expected to fit into support services, rather than services personalised to promote independence and extend opportunity. Disability service have also been fragmented, often inappropriate, and lacking coordination across the country. The insurance solution The support strategy recommended by the Productivity Commission and adopted by the NDIS Taskforce promotes three tiers of support for 3.8 million people with disabilities. The first tier includes campaigns and information aimed at raising awareness of disability and disability-related discrimination. The second tier includes coordination of mainstream information and referral services e.g. a centralised electronic database of service links to measures of performance and quality. The third tier will be individually tailored funded supports for people with long-term care and support needs. This will account for the bulk of the funding.
The NDIS is about much more than the provision of supports, information and referrals and challenging prejudice. It has the potential to put important decision-making in the hands of people with disabilities. For example, it will allow people to sever ties with disability service providers if they wish. While increased autonomy is a desirable outcome, it will lead to the need for more advocacy services. Need for advocacy As consumers become accustomed to the new model of support it will become apparent that for some people conflicts will arise in the following areas: • Assessment fails to anticipate and meet all reasonable and necessary support needs • Create needs itself - ‘transaction conflicts’ - associated with negotiating a complex bureaucratic system. No single program, even a generously funded one, will meet all the needs of all people with disabilities. The nature of disability changes with context. Where people’s support needs are being met it is clear that there will still be additional social barriers to full participation that an NDIS cannot, in the short term, overcome. Here are some powerful reasons why we will need strong government support for advocacy: • There is already considerable unmet demand for advocacy • Demand for advocacy will likely increase during transition under an NDIS • Advocacy must be independently funded and cannot be subsumed into other services • Support for advocacy is central to the current national disability strategy • The
international human rights covenants that promote and encourage advocacy for people with disability. The National Disability Insurance Scheme should create unprecedented opportunities and address some of the long-standing cultural biases against disabilities too – but it is also obvious the NDIS will not be a universal solution, and advocacy will remain a necessity. This article is a summary of an article by Queensland Advocacy Incorporated (QAI). Their 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. Visit www.qai.org.au.
Your life Your choice Your Life Your Choice provides the framework for how self-directed support operates in Queensland. It is a key principle behind the National Disability Insurance Scheme. Self-directed support is a funding approach which enables people with a disability and their family to have authority and choice and control over their disability supports and services. By having the opportunity to plan, purchase and select supports and services that suit a person’s individual needs, people with a disability and their families can become active participants in the design and delivery of their disability support. How does it work? A person with a disability can choose between receiving services that are delivered by funded non-government providers in the traditional way, or self-directing their supports designed by themselves to suit their specific disability needs. Self-directed support will look different for each person, and can change for the person as circumstances change. Self-directed support can start with a person taking as much responsibility as they feel confident with for the planning, budgeting and coordinating of their support, and for the purchase of additional assistance in these areas. Initially, self-directed support arrangements will be facilitated by a host provider who will work with the person and their family to develop a model of self direction that meets the specific needs and priorities of the person. This includes assisting the family to budget and coordinate their funding. Who can self-direct their support? Self-directed support will initially be for people and/or families who have: • ongoing (recurrent) funding • individualised funding • support needs that are considered stable. What is a host provider? A host provider is a non-government service provider that has developed a model of support that gives people greater choice and control and aligns with the elements in the Your Life Your Choice framework. Host providers have been endorsed and will enter into an agreement with the Department of Communities, Child Safety and Disability Services. Details about host providers are available through the website below. Like to know more? Visit: www.communities.qld.gov.au/ disability/key-projects/your-life-your-choice
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Quality of life Money doesn’t buy happiness, but Clare Townsend says it can be measured to ensure a better future for people with disabilities
Human rights are rights to which all individuals are entitled because they are human beings. The Universal Declaration of Human Rights1 sets out minimum conditions for a dignified human life. However possession of human rights is not guaranteed. People with disabilities continue to experience social exclusion and barriers to meaningful participation in the community.2,3,4 A rights-based approach The Convention on the Rights of Persons with Disabilities6 constitutes a basic shift in the treatment of people with disabilities from a medical or charity perspective to a rights-based approach.5 These rights cover many areas of life, including: • work and employment • physical wellbeing • social inclusion and participation • adequate standards of living • self-determination and independence • living personal development. 5 / BRIDGE MAGAZINE
Despite some advances, the quality of life of people with disabilities often differs significantly from others regardless of a country’s human rights perspective. People with severe and complex problems and those whose behaviour challenges our understanding are often not integrated into the community. Some experience overt physical and mental abuse and neglect, while others experience a lack of social inclusion and meaningful participation in the community, limited social relationships and restricted lives.
Quality of life is subjective and objective. It includes things common to all people such clean drinking water and things unique to the individual (e.g. having pets). The Convention on the Rights of Persons with Disabilities generally and specifically establishes the rights of people with disabilities to express their feelings about: • their condition • how they would like to live • the services they wish to receive.
What is quality of life? Quality of life has been described as: • “an individual’s perceptions of wellbeing that stem from satisfaction or dissatisfaction with dimensions of life that are important to the individual”8 • “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.9
How do we measure quality of life? Instruments have been developed to measure quality of life. They measure a person’s physical health, psychological health, social relationships, environment and the person’s own appraisal of his or her wellbeing. Although objective assessments are important, the person’s own views are crucial. It is essential that they provide information about their quality of life, rather than someone speaking on their behalf.
Quality of life varies over time and it is important to measure it regularly to enable an understanding of how a person’s disability, life experiences, and the effects of services and supports influence their quality of life. Human services have often focused on behaviour reduction as a key outcome rather than scientifically measuring the quality of life of people who have neurocognitive disorders and who display complex behaviours. Quality of life is becoming a more central focus. Services want to understand the positive aspects of people’s lives, and how these aspects can be constantly improved and enhanced through strategies including enhanced support services, access to employment, telecommunications, assistive technology, community living and informed decision making.
questions. As we continue trialing it may be necessary to develop a selection of measures which best fit individual communication styles. This will ensure all clients are involved in giving ongoing feedback regarding their level of quality of life and wellbeing.
Synapse clients & their quality of life Synapse has moved from focusing on behaviour reduction for its own sake to considering behaviour reduction as a means to achieve personal quality of life goals. In 2012 we introduced the Periodic Service Review (PSR) and routine use of the Overt Behaviour Scale10 enabling objective, quantification and measurement of behavioural change and dayto-day goals. Synapse is building on this work by developing a routine outcome measurement system to measure client outcomes against individual personal goals. In 2013 Synapse started to measure individual quality of life outcomes. The system will enable us to measure individual changes and changes across systems and populations. We will use validated quality of life measures that address: • emotional wellbeing • physical wellbeing • social inclusion • interpersonal relationships • material wellbeing • self-determination • personal development • human rights.
How does it work? Clients, family members and support workers will complete questionnaires. Service users and families will self-administer the selfreport questionnaire. For service users unable to self-administer other service users will be encouraged to assist.12 Data will be fed back to clients, support workers and families when they come to together for routine review of the client’s individual plan. The ongoing system will provide the evidence base for Synapse decision-making in terms of service delivery, management and policy. Trials to date have used the San Martin Scale.13 However Synapse clients are unique individuals who have various modes of communication and capacity to respond to
ABOUT THE AUTHOR, CLARE TOWNSEND PhD Since joining Synapse in May 2013 Clare has developed a strategic research agenda that addresses the needs of people with neurocognitive and other complex disabilities with specific emphasis on the policy and service needs of Indigenous Australians with complex neurocognitive disabilities and on routine consumer outcomes. Clare was Director of System Research at the Centre of Excellence for Behaviour Support, University of Queensland. Her research sought to inform policy and service reform and to address the human rights of people with intellectual disability and challenging behaviours. 1. United Nations General Assembly. (1948) Universal declaration of human rights. www.un.org/en/documents/udhr/ 2. Inclusion Europe. (2009) Position paper: Poverty and intellectual disability. Retrieved from http://www.inclusioneurope.org/uploads/doc/PP%2520FINAL.pdf 3. National People with Disabilities and Carer Council. (2009) SHUT OUT: The Experience of People with Disabilities and their Families in Australia. Retrieved from http://www.fahcsia.gov. au/sa/ disability/pubs/policy/community_consult/Pages/ default.aspx 4. Owen F., Griffiths D., Tarulli D., & Murphy J. (2009) Historical and theoretical foundations of the rights of people with intellectual disabilities: Setting the stage. In: Challenges to the human rights of people with intellectual disabilities (eds. F. Owen & D. Griffith), pp. 23-42. London, United Kingdom: Jessica Kingsley Publishers. 5. Guernsey K., Nicoli M., & Ninio A. (2007) Convention of the rights of persons with disabilities: Its implementation and relevance for the World Bank. Washington, D.C.: The World Bank. 6. Cummins R. (2005) Issues in the systematic assessment of quality of life. In: Assessing adults with intellectual disabilities: A service provider’s guide (eds. J. Hogg & A. Langa), pp. 10-19. Malden, MA: Wiley-Blackwell. 7. Martínez-Leal R., Salvador-Carulla L., Linehan C., Walsh P., Weber G., Van Hove T. M., et al. (2011) The impact of living arrangements and deinstitutionalization on the health status of persons with intellectual disability in Europe. Journal of Intellectual Disability Research 55, 858-872. 8. Ferrans, C., & Powers, M. (1985). Quality of Life Index: Development and psychometric properties. Advances in Nursing Science, 8, 15-24. 9. The World Health Organisation (1997). Measuring Quality of Life. Division of Mental Health and Prevention of Substance Abuse p.3. Retrieved from: www.who.int/mental_health/ media/68.pdf 10. Kelly, G. (2010). The Overt Behaviour Scale. The Center for Outcome Measurement in Brain Injury. http://www.tbims.org/ combi/obs ( accessed April 24, 2014 ). 11. Schalock, R.L. Verdugo, M.A., Jenaro, C., Wang, W., Wehmeyer, M., Xu, J., & Lachapelle, Y. (2005). Cross cultural study of quality of life indicators. American Journal of Mental Retardation, 110, 298-311. 12. Bonham, G.S., Basehart, S., Schalock,R.L., Marchand, C.B., Kirchner, N., & Rumenap, J.M. (2004). Consumer-based quality of life assessment: The Maryland Ask Me Project! Mental Retardation, 42(5), 338-355. 13. Verdugo, M.A., Gomez, L.E., Arias, B., Tasse, M.J. & Brown, I. San Martin Scale. INICO© 2013
Human rights for homeless Indigenous people Indigenous people are significantly over-represented in disability and homeless populations. The number of homeless Indigenous people with neurocognitive disabilities is unknown but thought to be significant. Lack of evidence based policy and service responses are thought to contribute to inadequate disability service provision and over representation in the criminal justice system. Synapse is seeking funding to undertake research that will address the lack of prevalence, demographic and qualitative data that identifies the experiences and needs of homeless Indigenous people who have neurocognitive disabilities and the need for culturally appropriate policy and service responses. The 12 month project will be undertaken in Cairns where 348 Indigenous people have been identified as being homeless. This includes those experiencing long-term homelessness. Stakeholders suspect high rates of neurocognitive disabilities amongst this group but lack capacity to assess the prevalence, nature or impact of such. As a result homeless Indigenous people with neurocognitive disabilities are frequently not registered as eligible for disability support and their needs are not incorporated in homeless policy, service models and community responses. Project partners will include the Specialist Disability Assessment and Outreach Service, Department of Communities (SDAOT) and James Cook University, with the blessing of the Traditional Owners of the land. Participants will be Indigenous people who use crisis accommodation services. A point prevalence study will ascertain the proportion of those with a neurocognitive disability. Participants will be offered a culturally safe and appropriate clinical assessment including: neurocognitive, psychiatric and functional assessment. They will be informed of their assessment results and eligibility for disability supports. Further interviews will explore participants’ experiences of neurocognitive disability and homelessness; understanding and expectations of disability supports, including the NDIS; preferred modes of access to services; and barriers and enablers to service usage. Consultations with Indigenous stakeholders and service providers will explore culturally appropriate diagnostic assessment, collaborative service provision and mechanisms to facilitate access to disability services.
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Successful advocacy How to make a complaint or influence change
Do you need to make a complaint? Do you want to advocate for change, either for yourself, on behalf of another, or for systemic change? These steps will help to ensure a more positive outcome. MAKE A COMPLAINT OR INFLUENCE CHANGE Keep emotional control While passion and emotions may be high due to negative circumstances, this won’t be helpful when attempting to negotiate. While difficult to contain these feelings, logical and evidential information will always help to influence change more effectively than anger, tears or threats. Pick your battles wisely Decide which issues are most important and must be addressed first. You cannot fix everything at once. You shouldn’t forget about other concerns, but it is wiser to prioritise what can be solved, or must be fixed urgently, and only move on once resolved. Know your rights, entitlements & responsibilities You can far more effectively advocate for, or challenge what is occurring, if you know what you are entitled to. Thoroughly familiarise yourself with policy, legislation, best practice, 7 / BRIDGE MAGAZINE
and individual service provider standards and objectives. Presenting standpoints from an informed perspective will gain you respect in negotiations, and ensures that they will be aware of your depth of knowledge and full commitment to the process. It also helps to reduce any feelings of vulnerability or dependency on others to guide your actions. Come with suggestions for resolution, not just complaints Providing potential solutions, and ways to obtain them, shows that resolution is possible and may also provide evidence of previously unknown or considered outcomes. It is far more productive to be a willing part of the solution than to simply judge, point out fault, or criticise the efforts of others. While any grievances may be justified, anger or resentment are rarely pathways to a resolution. Create a win-win situation Be prepared to compromise. Prioritise your needs and rights, but show equal consideration and awareness for the needs of others. This demonstrates you do not hold a selfish disregard or are dismissive of the impacts of these actions. A small gain is far better than no gain at all. Ensure positive ongoing relationships Relationship building is vital; you never know who you will meet or when you may
need a past connection again. Victory at any cost may provide one “win” but people forced into surrender or submission will not be willing participants in the future. Working with an individual or service will be extremely uncomfortable in the future when there is residual resentment or a mutual lack of respect. Acknowledge & praise efforts of others Take time to show appreciation for the efforts of others to create a harmonious environment for continued relationships in the future. This shows that you do not just complain about negative circumstances, but are able to recognise when things are done well. Positive praise makes people feel their efforts are not in vain, and makes them more willing to continue to put in greater effort. Where & how to make a complaint Always take your initial concerns to those immediately responsible for the delivery of the service. Most services and organisations have defined grievance processes or channels for reporting issues of concern. If you feel the issue has not been adequately addressed or resolved then escalate your case to those in more senior positions of authority (e.g. coordinators, heads of department, district managers, local Members of Parliament, Director Generals, Ministers, or an external regulatory body).
Always ask for the outcomes and minutes of a meeting to be provided in written form. If you have any need to challenge what has been documented do so in writing and ask for the response to also be provided in written format.
ESCALATING TO MEDIA, YES OR NO? In some cases, you may find yourself in the position of feeling your concerns are not being adequately addressed. When all other avenues have been attempted and proven fruitless, some people do consider using the media such as the newspapers or television to raise awareness of their situation. Undertaking this path must not be done without significant consideration for the many pros and cons which exist.
When making a complaint be sure to include all of the necessary information. Try first by answering the following questions: • What is your concern? • Who does it involve? • When did the event or issue occur or begin? • Where did it occur? • What could or should have happened? • What has been the outcome (both as a result of an action, or a consequence of inaction)? • What do you want to see happen? • How can this be achieved? Who can assist with the process? Always remember to provide evidence and supporting documentation, include others who can support your claims. Keep copies of all documentation and correspondence, including records of phone and email communications. Keep dates and names of people you speak to, and the outcomes of these comusnversations. Follow up if promised actions are not undertaken in a timely manner. Make sure to take someone else along to meetings. Having support may help to reduce any feelings of disempowerment if feeling outnumbered (it is common for several representatives from an organisation to attend). This can also help with validating or providing evidence at a later date if there are differing opinions on what was discussed.
Pros Creating greater awareness for a situation can have the effect of identifying others who have experienced a similar situation or outcome. Additional numbers can help to add weight to your expectations for change due to the number of people similarly affected. Demonstrating that your experience is not a unique occurrence can show that your expectations are not unreasonable. Media attention can help to highlight the urgency of a situation, create community outrage, and put a spotlight on what needs to change. It can also draw the attention of those in positions of authority, and motivate them to seek answers from those more directly involved with the case. Cons Media attention can be very invasive and will expose you and your family to the judgment and scrutiny of others. Loss of privacy and negative opinions of people who may not have any empathy or understanding of the situation can be difficult to deal with. Exposure in the media can antagonise those from whom you are seeking support or help, especially if they receive negative publicity as a result. You may find that any future services or organisations may be nervous or have reluctance to be associated with you due to your demonstrated willingness to go to the media. REFERENCES AND FURTHER INFORMATION Explore these links for useful services and information: • www.humanrights.gov.au/guide-australias-antidiscrimination-laws • www.humanrights.gov.au/disability-rights-internationalconvention-human-rights-and-disability • www.humanrights.gov.au/our-work/disability-rights/ disability-standards-and-guidelines • www.humanrights.gov.au/disability-rights-disabilitylegal-services • www.humanrights.gov.au/know-your-rights-disabilitydiscrimination • www.fahcsia.gov.au/our-responsibilities/disability-andcarers/standards-and-quality-assurance
If you have a complaint about any government service they will have a complaints procedure they can refer you to. If you have exhausted the options provided, here are contacts in each State for the relevant Ombudsman or Commissioner. Queensland: The Queensland Ombudsman investigates complaints about state government agencies, local councils and public universities. The service also help agencies improve their decisionmaking and administrative practice. Visit the website at www.ombudsman.qld.gov.au New South Wales: The NSW Ombudsman has range of responsibilities in relation to complaints about community and disability services, including handling complaints and reviewing the causes and patterns of complaints. Visit www.ombo.nsw.gov.au for more information. Northern Territory: The Ombudsman’s office is the next step if you have taken all possible steps to resolve your concerns directly with the relevant government department. Visit: www.ombudsman.nt.gov.au Victoria: The Disability Services Commissioner can respond to complaints about Victorian disability services including disability services provided by the Department of Human Services. Visit the website at www.odsc.vic.gov.au. There is also the Victorian Ombudsman at www.ombudsman.vic.gov.au South Australia: The Ombudsman is independent, and investigates complaints about South Australian government and local government agencies. Visit: www.ombudsman.sa.gov.au Tasmania: The Ombudsman is an independent officer appointed by the Governor to investigate the administrative actions of public authorities to ensure that their actions are lawful, reasonable and fair. www.ombudsman.tas.gov.au Western Australia: The Health and Disability Services Complaints Office is an independent statutory authority providing an impartial resolution service for complaints relating to health or disability services provided in WA. This service is free and available to all users and providers of health or disability services. Visit https://www.hadsco.wa.gov.au
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Living next door to Alice Social inclusion, disability & neighbours behaving badly
For those old enough to remember this song it was a 1970s anthem about 25 years of unrequited love, but for me it is simply a reminder of how neighbourly relationships can and do profoundly affect us (yes, my name really is Alice). Good, bad, or indifferent, we all have a neighbour story to tell. Generally most of us have good relationships with the people we very closely share space with, but lots of things can easily cause a neighbourly relationship to sour – overhanging trees, common fence lines, barking dogs,
loud teenagers, construction noise, or early Sunday morning mowing. Any of these can mean neighbours go from friendly waves and cooperation to killing pets, uprooting trees, hurling abuse, and calling the police. In my case the catalyst was the birth of my now 26-year-old son JH, who was at age three diagnosed with autism. As a result we have experienced the whole spectrum of the good, the bad, and sadly the sometimes downright ugly.
GOOD NEIGHBOUR TIPS • Make time to get to know and form a relationship with your neighbours • Recognise and respect each person’s right to live according to their own values, beliefs and needs • Do not invade privacy or excessively invest in neighbourly relationships • Where possible make home or property modifications to help ease known triggers of discontent • Acknowledge and respect each person’s needs, and work towards compromise together.
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Two families & two different stories It all began more than 30 years ago when we moved into a nearly empty street with only a few existing houses already there. We built our home, had three sons (of which JH was the eldest), and in a very short time people built their homes beside us. The family on one side went on to have three girls, and the other family had two boys, and all these years later we still live beside each other. What living beside these same neighbours all this time has taught me is that equal exposure and experiences does not necessarily result in the same understanding or outcomes. In fact despite having the exact same interaction and association with us, these two families, and our relationship with them, could not be more different. Having autism meant that my son has difficulties in understanding the social norms and boundaries that most people take for
WHEN THINGS AREN’T GOING WELL . . . • • • •
Speak with other family members or support people Accept education and mediation if offered, and establish behavior protocols or responses If police are likely to be involved make them aware of the situation and provide information about the person’s disability, support persons to contact, and establish processes of response. Learn aboout your rights by starting with some of the points below: - https://www.humanrights.gov.au/publications/what-universal-declaration-human-rights - http://www.un.org/disabilities/convention/conventionfull.shtml - Peace and good behaviour order https://caxton.org.au/pdfs/Peace%20and%20Good%20 Behaviour%20Order%20kit%202013.pdf
granted. From a very young age all JH wanted was to have friends, be liked, and know he was safe, even if some of his behaviours seemed unusual to those who did not understand autism. For those with an interest in social and human behaviour our home is the perfect example of how our own responses can dramatically affect and influence a course of events, and their outcomes. In the case of our two neighbours the saying, “Life is 10% what happens to you, and 90% how you react to it”, has never been more profoundly demonstrated. The outdoors and being around nature was JH’s sanctuary – he would also sit at the fence line of either property watching the people next door, trying to get their attention and seeing if he could get them to say hello or share some time with him. Despite having huge anxiety about doing this, and constantly being fearful of how he would be received or rejected, his need to feel connected kept him trying. I was very proud of him and his efforts, knowing very well the overwhelming fear he faced in doing so. Sadly his efforts we not equally received or reciprocated, and while one family responded with warmth, understanding and acceptance, the other was dismissive and rejected all his efforts to be friendly. Later, this degenerated even further to rude and abusive behaviour, swearing at him, threats of calling the police, or making hurtful comments known to cause anxiety and distress him even further. At times the children even took pleasure in knowing their comments would elicit his stress responses of hitting his own head or biting on his arm, and they laughed at him for doing this, but were never checked by their parents or told to stop. Eventually even the thought of going out into his garden caused such a state of anxiety that JH could no longer go out the back door if he saw any members of this family out there. JH would become frozen with fear, his heart rate would race, stress would escalate, and the very behaviours these neighbours complained about began to increase in frequency. JH’s sanctuary of being in his garden was taken from him, his ability to trust people and his to desire
to connect, died, and his world grew smaller and smaller. We tried many times to offer information to this family and raise their understanding of my son’s disability, but they rejected everything and refused to consider that their actions could in fact be contributing to the now negative and fearful relationship that was affecting all. Even the offers of mediation or the services of a behaviour expert were not accepted, and now years on we are no closer to resolving this situation or easing the tension. The happy side of this story is that the family living on our other side continues to have a most positive and delightfully reciprocal relationship that has been wonderful. So why do I tell this story? Legislation was passed just a few years ago for the deinstitutionalisation of people with disabilities. There was also finally recognition for the rights of all to be included in their communities. However this legislation cannot protect them from those in society who still feel that “those people” should not be amongst us. Sadly there are still some who hold the “not in my neighbourhood or next to me” mentality and wherever you find this thinking and lack of acceptance, life continues to be difficult for those most vulnerable members of our society. The institutions may be gone, but the isolation and disconnect continues; only now it happens in nice little houses, in lovely little streets. Embracing diversity is what allows us all to grow and expand as individuals, and it defines us as humans, but it seems that compassion and acceptance cannot always be expected, and is not always a given. My hope is that with education and raising awareness we will be able to change this narrow-minded thinking so that people with disability or behaviours that challenge our understanding will be able to live and fully participate in their communities with the understanding and support they deserve. After all, aren’t we are all moving towards being aged, and the possibility of an accident or illness can very quickly place any one of us in the position of being the person needing this help. This investment in kindness may very well be an investment in your own future.
On the edge People with a brain injury are often living on the edge of life. Exclusion from aspects of community life occurs not only because we may not be financially well off but through psychological means, when we do not feel valued by those around us. Today there is widespread systematic exclusion of whole groups of people in Australia, particularly those with a disability. If you experienced a brain injury today, you could find, depending on your circumstances and the extent of the injury, that your life is disrupted and the quality of your social interaction is reduced. You may have problems with memory, comprehending and retaining information, learning new things, organising, sequencing and problem-solving, impaired perceptive ability and lack of insight. Many do not understand what a brain injury is, so they may assume you are disinterested, irresponsible, lazy, unmotivated, angry, non-compliant and difficult. People often find that friendships tend to disappear when there significant cognitive effects that affect their social interaction. A brain injury may mean you can longer stay employed. You may find that you are eligible for the Disability Support Pension but you have difficulty trying to survive on this amount of money. Alternatively you may have to go on the Newstart Allowance which can be very difficult. You are given a job diary and told you have to apply for numerous jobs every fortnight. You forget to turn up to appointments or respond to Centrelink letters. You lose some of your payment because you have been breached. You have to go to employment services but they don’t have staff who understand what a brain injury is. You are told things that you don’t remember, and nobody thinks to write them down for you. This is the precarious edge of life that many can face after acquiring a brain injury. Contact the Brain Injury Association in your State to ensure you receive all the support you possibly can to ensure you aren’t living on the edge after acquiring a brain injury.
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Difficulty with making decisions This is common after a brain injury, according to Dr Andrew Bateman and Prof Jonathan Evans
Decision-making is one element of a broader set of mental skills that have been called ‘executive functions’ – these are the skills needed to enable us to deal with problems that arise in everyday life and to cope with new situations. Everyday life is full of situations in which we have to make decisions – some minor (which toothpaste will I buy, what will I have for dinner tonight?) and some major (will I stay in this relationship, will I change my job?). Decision-making involves many different cognitive functions working together – longterm memory (how have I dealt with similar situations in the past?), working memory (holding information in mind and thinking things through) and emotion (how important is this decision to me, and how will the possible outcomes make me feel?) are all involved. Because decision-making involves a lot of 11 / B R I D G E M A G A Z I N E
different processes, this means that if any one of these processes is affected by brain injury, then decision-making may be impaired. People are affected in different ways – some find it hard to make a decision at all, finding that even what seem like simple decisions, such as what toothpaste to buy, become almost impossible. Some people become impulsive, making hasty decisions, apparently acting without thinking things through. Poor judgement in relationships, with money, or in business, can have devastating consequences for the individual and their family. All of us, with or without brain injury, have difficulty making decisions from time to time, but brain injury can make this much more frequent. Decision-making & following through For some people, a decision about a plan of action might be made, but it is difficult to
follow through with the plan. It is as if a person’s intention, or goal, becomes neglected. This can sometimes be because the person becomes distracted by other tasks or activities. The person ‘forgets’ to do things, not because what has to be done has been completely forgotten, but rather that it is difficult to keep the thing to be done in mind (e.g. take medication, go to appointments, give someone a message, carry out daily tasks, watch a favourite TV program). This type of remembering is often called ‘prospective remembering’. It requires alertness to the plans for the day. Psychologists use the concept of a ‘mental blackboard’ to describe how we keep things we intend to do in mind (written on a mental blackboard). However, the difficulty can be that for a person after brain injury things are easily rubbed off a mental blackboard and temporarily ‘forgotten’.
or professionals, and for the individual to want to learn about possible solutions.
Although the person may remember their intention when reminded. Self-awareness (insight) The cognitive problems that cause difficulties with decision-making or prospective remembering may also make it difficult for an individual to be aware of their problems. This can be difficult for the person and his or her family and friends, and cause conflict. The person may show what may be considered by others as bad judgement, and they may fail to achieve important tasks. However, they may not be aware of these difficulties, or share the opinion of those judging this as a difficulty. So one of the first challenges to overcome is related to the need for the individual to achieve a degree of self-awareness and understanding of the problems they are experiencing. This may require sensitive feedback from family, friends
Rehabilitation It can be challenging working out how to improve decision-making, problem-solving, planning, following through, and remembering to do things. The first step in rehabilitation is understanding the problem, but with something as complex as decision-making or problemsolving this may not be straightforward. It may be best done with the help of a professional such as an occupational therapist or clinical psychologist. For some people, learning to manage impulsivity is important – developing a habit of often stopping and thinking, even if just briefly, about what you are doing and what you have to do can help to interrupt a tendency to act without thinking. The idea is that people become better at using ‘self-talk’ – regulating their own actions or behaviour. In Goal Management Training, people learn to be clear on what they want to achieve, work out and keep in mind the steps needed, then regularly check their mental blackboard to ensure important tasks are kept in mind. A study by researchers in Cambridge and Glasgow showed that Goal Management Training, combined with text message reminders, helped people to remember tasks (making a phone call to a voicemail service) that had to be done four times a day. Goal management involves these steps: GOAL: What are you trying to achieve? OBSTACLE: What is standing or could stand in the way of you achieving the goal? PLAN: What do you need to do, and do you need help for any one of the steps? PREDICTION: How well do you think you will do? How many can you get done? DO: Implement the plan. REVIEW: What worked? What didn’t work? Why or why not? External aids External aids such as diaries, notebooks, wall charts and calendars are invaluable for people with memory impairment. Also, electronic watches, mobile phones, pagers and tablet computers can all be set to provide reminders and cues to do specific tasks, or to check a daily planner. It isn’t always easy for someone with memory difficulties to use these aids so the help of a relative, carer or occupational therapist may be needed. Thanks to the original authors, Dr Andrew Bateman (Clinical Manager, Oliver Zangwill Centre for Neuropsychological Rehabilitation, Ely UK) and Prof Jonathan Evans (Professor of Applied Neuropsychology, University of Glasgow, UK) for permission to reproduce this article.
Had enough? We certainly have! Alcohol-fuelled violence typically involves males, but a disturbing account recently in Brisbane had a young male knocking out a woman with a single punch from behind. The intoxicated male was rebuffed by the group of women after inappropriate behaviour. He apologised and left, but 30 seconds later returned and punched one of the women from behind. This caused bleeding on her brain and ongoing seizures and while she has returned home, has ongoing cognitive issues and a fear of going outside. The male was sentenced to 12 months imprisonment with a non-parole period of two months and ordered to pay more than $8000 as restitution.
It’s time to turn our outrage on those who hide behind alcohol, drugs and anonymity. It’s time to turn the tables on the ‘dicks’ who think bashing some poor stranger will make them feel better about themselves. The only thing this senseless violence has ever achieved is to ruin people’s lives. . . far too many lives, and far too many times. We know because we deal with the human tragedy that follows. Violent assault is rated among the top three most common causes of Traumatic Brain Injury, which is a major cause of disability and death worldwide. In 2004-05 it was responsible for around 22,700 hospitalisations, about 980 deaths in hospital, and estimated direct hospital care costs of $184 million (AIHW, 2008). Enough is enough. Add your voice across social media to help get the message out. . . that violence destroys lives. Here’s the hashtag #DontBeADick. Now use it!
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Adapting your home
Making your home a safer and easier to manage environment for a family member with disability
Planning and making home alterations can take time so it’s wise to start as soon as possible. Remember that any significant alterations, such as rails or ramps, need to comply with building standards. Around the house Occupational therapists can assess your situation and suggest the most appropriate equipment and aids, such as the need for wheelchair ramps or handrails near the stairs, outside steps and in the bathroom. Arrange the furniture so that it is easy to move about. Some people need a clear passage. Others may need supports along the way. Install smoke detectors in all rooms. Keep the temperature inside the house comfortable for 13 / B R I D G E M A G A Z I N E
someone who cannot move about or regulate body temperature. Remove extension leads or loose cords and don’t use loose rugs or mats on floors. Keep outside paths free of loose things you could trip on. Room-to-room communication and alarms can be arranged with plug-in baby alarms or more sophisticated alarms. A buzzer or doorbell could be wired to a light-touch switch. Ask your occupational therapist. A hands-free phone makes it possible to talk without lifting the handset. Choose one with a memory function for frequently used numbers. Phones are also available with large numbers for people with poor vision.
Get a “pick-up stick” – a metal stick with a lifting claw at one end that is closed by a trigger at the other end –for picking up things out of reach. In the bathroom A plastic chair or stool in the shower allows your family member to sit down. A longhandled sponge, soap on a rope and a suction cup to keep soap in place may be useful. If possible, it is best to have no step into the shower. Use a non-slip bath mat. Stick anti-slip adhesive shapes on the bottom of the bath. Try a raised toilet seat or a mobile commode that can be wheeled over the toilet. Install hand rails beside the toilet and shower.
Special mattresses to increase comfort in bed are available: air beds, water beds, net beds, deep mattresses. Mattress elevators raise a person from lying to sitting. Consider satin sheets. They make it easier to move in bed. Dressing Use clothes that are easy to put on and quick to fasten – front-opening dresses, skirts or trousers with elastic waist bands, track suit trousers, clip-on ties, cardigans rather than jumpers, slip-on shoes, elastic shoelaces, stretch fabrics without zips or buttons. Aids for dressing include devices for putting on socks, long shoehorns, gadgets for doing up shoes and foot stools. In the kitchen Benches and tables should be the right height for the person to work at or have meals at while sitting – with room for a wheelchair if necessary. Useful gadgets include steel-pronged, wooden boards that secure vegetables for cutting, pot stabilisers that secure saucepans to stove tops during stirring, and a tap “turner” for someone who cannot easily grasp a tap. Special bowls, cups, knives, forks and spoons are available for people with restricted hand function. Plastic is more practical and safer than china and glass if the person has difficulty holding objects. A plate guard that attaches to the side of the plate stops food escaping and gives the person something to push against.
An electric toothbrush is ideal for people who have difficulty cleaning their teeth. Consider installing individual hot and cold taps or a hot water system that is thermostatically controlled to prevent hot water burns. In the bedroom A person should be able to sit on their bed with their feet flat to the floor. If the bed is too high, consider having its legs shortened. If too low, sit the bed on special raisers. Bed sticks or “monkey poles” are available that provide something to hold on to so a person can swing themselves upright in bed. A commode or urinal may overcome the problem of toileting at night. A plastic sheet on the bed is useful when someone has incontinence.
Financial assistance Talk to the Brain Injury Association in your State about possible options here. If you are already in touch with an occupational therapist or social worker, ask them if your family is eligible. The Independent Living Centres in each State can help to organise your application for funding. In each State, Home and Community Care can arrange maintenance and home modifications, such as the fitting of handrails. Contact your local council. This article is reproduced from “Those who care” published by Brainlink, a Victorian-based service that is dedicated to improving the quality of life of people affected by acquired disorders of the brain, by providing support to their families and carers. Visit www.brainlink.org.au to find out more about Brainlink. Contact the Independent Living Centres Advisory Service by ringing 1300 885 886 or visit http://ilcaustralia.org.au
Visualising The Brain In Real-Time
What if you could watch your brain and see exactly what you were thinking? Well, of course you can’t do that. But a group of scientists in the Neuroscape lab of the University of California San Francisco, run by Adam Gazzaley, have developed a sophisticated new imaging technology, called Glass Brain, which creates colorful visualizations of brain activity in real-time. To do this, the brain is first scanned using magnetic resonance imaging (MRI), a technique utilizing strong magnetic fields and radio waves to image the body. This then generates a high-resolution 3D model of the participant’s brain. Brain activity is then recorded by an electroencephalogram (EEG) which measures changes in voltage that occur when currents flow through neurons. Normally, EEG recordings look like a series of squiggly lines, something you might expect to come out of a lie detector. However glass brain converts this information into bursts of colorful activity, weaving through the 3D brain in real-time as different parts of the brain display activity. This can then be visualized by the participant on a game pad, allowing them to whiz around different areas of their own brain. This isn’t just extremely cool - it’s hoped that it may potentially have therapeutic applications. Many brain imaging technologies are limited because they require that the individual is placed inside large machines and must remain still, whereas this technology allows individuals to be in a somewhat more true-to-life scenario, which could give more information. Gazzaley hopes that this technology could be applied to aid the treatment of numerous conditions, such as Alzheimer’s, schizophrenia and depression. Read more at http://www.iflscience.com/brain/ scientists-develop-way-visualise-brain-real-time
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Support needs of carers Bryony Kitter looks at strategies for the many issues facing carers
One of the issues with a brain injury is its incredible complexity which affects each individual differently. This causes significant problems when trying to predict prognosis, recovery outcome, and establishing the injured individual’s needs during the recovery process. The care needs of people affected by a brain injury often fall informally onto their parents, spouse or siblings. In Australia, 97% of people under 65 years with a brain injury live in households, whereas only 3% live in cared accommodation. Research by Pakenham et al. (2005) found these caregivers reported caring an average of 114 hours per week, and that half earn under $20, 000 per annum. The sudden and abrupt nature of brain injury places huge demands on family members, and comes at a personal cost to the primary carer. COMMON ISSUES FACED BY CARERS The psychological and physical impact Caring for their loved one with severe 15 / B R I D G E M A G A Z I N E
disabilities is often a huge psychological burden. Many carers can experience depression, distress, frustration, anxiety, social isolation, family strain, sleep deprivation, burn out and adrenal fatigue. Carers can also feel a tremendous sense of loss – the loss of a partner or child as well as the loss of their own identity. One of the major challenges is the sudden and abrupt nature of the injury, allowing no time for emotional, psychological or financial preparation. Uncertainty and the lack of direction for their loved one’s present and future circumstances is a source of significant stress.
and/or embarrassing for the carers. Carers often need to constantly adapt to new situations due to the unpredictable nature of the effects of a brain injury. Friends and family seem to struggle the most with the changes.
Social isolation A common issue faced by carers is the feeling of isolation that can occur after brain injury. Friends and family often drop away when they don’t understand the impact of a brain injury, and distance themselves to avoid embarrassment or being offended. Emotional and behavioural changes can occur after a brain injury which often lead to social situations which are strained
Getting to know the new person The behavioural disturbances that can result after a brain injury have a tremendous affect on day-to-day life for carers. These can include emotional and personality changes, violent outbursts, substance abuse and inappropriate sexual behaviour. Theses changes place significant pressure on relationships within the family.
Change in roles Another issue that carers face is the changing of the roles within their family. The lack of employment opportunities for people with disabilities, costs involved with caring, lack of time, and the everyday costs of running a household places a significant financial strain on themselves and their families.
In contrast, the issues arising from a less severe brain injury are likely to be: •Skills to cope with behavioural problems • Skills to cope with the emotional changes • Respite access • Counselling support • Education • Social support • In home support • Employment opportunities • Future planning. SUGGESTED SOLUTIONS Maintain your identity Emphasise the importance of keeping your own identity throughout the caring role. Make a conscious effort of taking control of your situation – don’t let your circumstances control you. Taking time just for yourself Find ways that can help you cope through stressful periods. Taking time out just for yourself is incredibly important to maintain your quality of life. This could include things like exercise, using social media and taking a hot bath. The point is to stop, breath and focus on you. You need to make sure you are looking after yourself in order to care for your loved one. Find the positive aspects Although the stresses and demands of the caring role have a negative impact, there are still many positive aspects. Realising that you are helping to make someone else’s life better can lead to closer relationships within the family – this is a common positive experience for carers. The role can generate new appreciation of life, providing valuable life lessons that can lead to rewarding experiences. Lack of services & support A major issue is the frequent lack of appropriate services and support available for carers and their family member when they return back to work, study and/or the wider community. A common issue for carers is the lack of knowledge of where, who and what they need to be looking for in terms of support. COMMON NEEDS OF CARERS Depending on the loved one’s injury severity, your needs will vary. A severe brain injury means the family is likely to be concerned with the following issues: • Medical care • Respite access • Assistance with incontinence • Equipment access • Education • Social support • In home support • Counselling support • Future planning.
Know where to find support Knowing where to look for support can be incredibly daunting and frustrating. Depending on your area of location, services and support will vary and it is often up to the carer to go out and source these services for themselves. Start by: • Searching for your local disability services in the area • Searching for local respite agencies • Contact a counsellor • Join online forums to connect and share experiences • Contact your the Brain Injury Association in your State. This article is based on research conducted by Bryony Kitter at the University of the Sunshine Coast. USEFUL SUPPORT SERVICES IN QUEENSLAND Synapse - http://synapse.org.au Carers QLD - http://carersqld.asn.au Blue Care - http://www.bluecare.org.au ABIOS STEPS - http://www.health.qld.gov.au/abios/steps YoungCare - https://www.youngcare.com.au Lifeline - https://www.lifeline.org.au
Encouraging independence A human being’s right to independence is enshrined in many types of legislation, but promoting it for people with a brain injury can be a tough job. The emphasis is still on medically stabilising a person, provide some basic rehabilitation then that’s the end of the story. Ideally we should maximise the ability of everyone to make informed choices according to their own beliefs and preferences. At Synapse, our model of practice is based on: • Positive Behaviour Support • Client- centred planning • Least restrictive alternatives. In a nutshell, this means using positive ways to influence behaviour, not punishment. Everything is framed by the client’s needs, not those of the organisation. The existing strengths of a person should be identified and included in any strategies. Any interventions should cause the least disruption or change in the person’s circumstances as possible, and be done in a way that maximises their independence and freedom. What about when full independence isn’t possible? The principle of the least restrictive alternative should be applied. An example of this would be someone who has become impulsive after a brain injury and cannot manage their money. Before appointing a Guardian to manage their financial affairs, every effort should be made to see if the person can relearn money managements skills, or if family members may be able to provide support. Carers and family members play a crucial role in maximising independence for someone after a brain injury. It is vital that they are involved with setting goals, and how to achieve them. Important questions to ask are where will the person live, how they will be occupied, how they will relate to others, and what is their perception of quality of life. Promoting independence can lead to increased likelihood of safety, opportunities to exercise choice and an enhanced sense of self-esteem. Unfortunately the existing technology to promote self-sufficiency skills in people with brain injury has been borrowed from other areas. We assume it is effective, but more research is needed on life skill development, use of rehabilitation technology and life outcomes as a result of specialised treatments.
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ABCs of ABI
Over 1.6 million Australians are affected with some form of Acquired Brain Injury (ABI), which is damage or neurological disruption in the brain occurring after birth. There is little understanding in the community about ABI and the impact it has on people and their families. Often there is no visible evidence of a brain injury having occurred, so it is often called the invisible disability as the effects of ABI are seen as personal faults or character flaws. Even family members and friends may regard their loved one as lazy or hard to get along with. Causes of ABI The brain can be injured as a result of an accident, a stroke, alcohol or drug abuse, tumours, poisoning, infection and disease, near drowning, haemorrhage, AIDS, and a number of other disorders such as Alzheimer’s disease, Parkinson’s disease and Multiple Sclerosis. Effects of ABI The human brain is the most complex object we have ever discovered, so it is no surprise that any injury or disruption can have a wide variety of effects, including: • medical difficulties • changes in physical and sensory abilities • changes in the ability to think, remember and learn • changes in behaviour and personality • communication difficulties. Long-term effects are difficult to predict, and will be different for each person. However, appropriate rehabilitation and support are always important in determining the level of recovery achieved. There is an increasing awareness of ABI in society, which hopefully will lead to more support services as well as a better understanding of the difficulties faced by people who have acquired a brain injury.
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Coping with memory problems Short-term memory is very common after a brain injury – thankfully there are plenty of coping strategies available
Memory impairment is one of the most common effects of a brain disorder. Sadly there are no cures available, but there are a number of ways of coping and making life easier. It is important to remember that using the strategies described here is not ‘cheating’ and will in no way prevent natural recovery or cause existing skills to be lost. You can minimise the impact of memory problems through: • adapting the environment • using external memory aids • following a set routine • combining several strategies to make a substitute ‘memory system’ • improving general well-being. Adapt the environment One of the simplest ways to help people with memory problems is to adapt their environment so they rely on memory less. Some ideas for doing so which have helped others are: • Keep a notepad by the phone to make a note of phone calls and messages • Put essential information on a noticeboard • Decide on a special place to keep important objects like keys, wallets or spectacles and always putting them back in the same place • Attach important items to your person so they can’t be mislaid e.g. using a neck cord for reading glasses • Label cupboards and storage vessels as a reminder of where things are kept • Label perishable food with the date it was opened • Paint the toilet door a distinctive colour so it is easier to find • Label doors as a reminder of which room is which. Use external memory aids Many people use external memory aids, regardless of whether they have a brain injury or not. External memory aids are particularly important for people with memory problems as they limit the work the memory has to do. Check with your local Brain Injury Association for places where you can buy memory aids. Some examples include:
• Smartphones and diary or calendar apps • Diaries, filofaxes or datebooks • Notebooks • Lists, wall charts and calendars • Alarm clocks and watches • Tape recorders and dictaphones • Electronic organisers • Pagers • Pill reminder boxes for medication • Sticky-backed notes • Photo albums • Cameras. Follow a set routine Having a daily and weekly routine means that people with memory problems can get used to what to expect, which helps to reduce the demands on memory. Changes in routine are often necessary, but can be confusing. It is a good idea for relatives and carers to explain any changes in routine carefully and prepare the person with memory problems well in advance, giving plenty of spoken and written reminders. You could also try the following reminder strategies in order to establish routines: • Make a note of regular activities in a diary or on a calendar • Make a chart of regular events, perhaps using pictures or photographs, on a notice board. Combine several strategies to make a substitute memory system Most people with memory problems find it useful to combine several aids and strategies. A combination of two or three strategies can cover the areas where there would otherwise be problems and provide a safety net for things that must be remembered. Here are examples of the components of two such combination systems: System one: • Three lists – one showing routine tasks, one showing where to find files in the filing cabinet and showing key rules, such as when to do the filing each day • A ring binder with sections on urgent tasks and long-term projects • A notebook • A telephone message pad to make notes of conversations
• A computer calendar and alarm • Practising assertiveness techniques to ‘buy time’ instead of having to respond to requests immediately • Simple relaxation and breathing techniques to reduce anxiety System two: • Filofax • Journal • Watch • Dictaphone • Various lists • Sticky-backed notes • Menu chart • Keeping things in the same place • Following routines. Improving general well-being Memory is very important in giving us a sense of our own identity. Memory problems often have major emotional effects, including feelings of loss, anger and increased levels of depression and anxiety. Some approaches to dealing with this are as follows: • Follow the strategies outlined earlier – they can provide a measure of control which can relieve anxiety and depression • Sharing your feelings with others can provide relief and reassurance – see if there are support groups in your area • Identify activities you find enjoyable and relaxing, such as listening to music or exercising, and take the time to indulge in them. This article is an excerpt from a fact sheet, reproduced from www.headway.org.uk with the permission of Headway - the brain injury association. You can send an email to firstname.lastname@example.org to discuss any issues raised. Visit the website for great resources available for free download.
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Now you see it, now you don’t
Acquired brain injury is often called the invisible disability, because a victim may outwardly appear to be unaffected but suffer many cognitive deficits. Even family members who have been there right throughout the hospital and rehabilitation phase can start to see their loved one as being deliberately lazy, unmotivated and difficult to get along with. But there are many other aspects to this invisibility. LACK OF SERVICES Given the incidence and wide-ranging effects of acquired brain injury, governments provide very little in the way of funding, compared to other disabilities. For example, the number of people whose disability arises from a brain injury is roughly comparable to those affected by intellectual disability or a psychiatric disability. Yet the support services offered by Government, if they exist at all, are woefully inadequate. STIGMA Many people know little about Acquired Brain Injury, and tend to equate it with an intellectual disability. They may not realise that someone with a mild brain injury usually as the same intelligence as before, but they may be wrestling with short-term memory issues. DIAGNOSIS Diagnosis, treatment and support may not be given when it is needed most. In the past, many people who had acquired a brain injury were told by hospital specialists that there was nothing wrong them, as diagnostic tests frequently did not show the microscopic damage to brain cells. MAKING THE INVISIBLE DISABILITY MORE VISIBLE The Brain Injury Associations across Australia are committed to systemic advocacy. Hopefully this will increase both public and government awareness of Acquired Brain Injury and eventually there will be the support needed for proper rehabilitation and reintegration into the community.
Sometimes what seems to be a memory problem can really be a problem with attention Your family member may not be able to make new memories because they have a hard time paying attention to things. Here are some common attention problems: • Trouble keeping their mind on one thing and ignoring things around them • Easily distracted by noises that wouldn’t have bothered them before (e.g., trouble listening to a conversation in a crowded restaurant) • Trouble concentrating on reading • Difficulty doing more than one thing at a time, such as watching TV and cooking a meal, or answering the phone and watching the children) • Difficulty “switching gears” or changing focus from one thing to another (e.g. may continue to do things the wrong way even after you explain why it should be done a different way) • Often disagrees with you about what you or someone else said. What you can do to improve attention Make sure your home is free of clutter. Keep things organised. Try to keep things in the same place without changing things around much. Make sure that everything is put away except the things they are working with. For example, if your family member is going to cook a meal, have in sight only the things they need for that meal. When telling your family member something you want them to pay attention to, turn off the
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TV, radio, etc. Make sure there are not a lot of other people around to distract them. Don’t leave the TV or radio on all the time, but only when someone wants to hear it. Make sure your family member works on only one thing at a time. Encourage them to take notes when reading something that they need to remember. If they liked to read for pleasure before but have difficulty doing so now, consider buying some books on tape. That way they can listen and replay parts that they forget or don’t understand. If your family member gets stuck on one idea or task, gently direct their attention to a new task or idea. For example, say “We are no longer talking about that; we are now talking about. . . ” This excerpt from “Picking up the pieces after TBI: a guide for family members” is reproduced with permission of Angelle M. Sander, Ph.D., with Baylor College of Medicine and TIRR Memorial Hermann. This free publication is available for download from www.tbicommunity.org or www.brainline.org. The work was funded by Grant No. H133B03117 from the National Institute on Disability and Rehabilitation. FURTHER READING Visit http://synapse.org.au/get-the-facts.aspx and read our fact sheet “Attention and Concentration”.
Returning to work The alarm clock goes off. It’s six o’clock on a Monday morning – the start of the working week and the first of five days until the weekend. Unfortunately, the privilege of grumbling about work or fighting with the doona on a cold winter’s morning is not given to everyone. In 2009 this privilege was given to 54.3% of people with disability compared to 83% of people without disability. Five years on, we can hope that diversity-championing campaigns and disability-positive employers have seen this disproportion reduce, but there is definitely more that can be done to ensure people with disability are employed. The benefits of employment are undeniable – increased financial freedom and independence, and the opportunity to establish a routine, boost confidence, form strong social networks and improve overall health and wellbeing. These benefits are most apparent to people who have been forced to stop working due to changed circumstances, such as acquiring a disability. What can job seekers do to return to work after acquiring disability? Since 2006, the Government’s Disability Employment Services (DES) program (originally the Disability Employment Network) has provided a supportive structure for job seekers with disability to commence in or re-enter the workforce. The Government contracts providers
to deliver wrap-around services, which includes pre-employment assistance, job-seeking support and a post-placement support service. Job seekers with disability who are interested in finding employment can access the services of a DES provider by: • receiving a referral from the Department of Human Services (Centrelink), or • directly registering with a provider, who will then put them in contact with the Department of Human Services (Centrelink) to check eligibility for services. Once job seekers are a registered client of a DES provider, they will have an appointment with an employment consultant who will work out what assistance the provider can offer, and what is required from the job seeker to ensure long-term employment success. An individualised Employment Pathway Plan will be created and can include physical or personal health services, training courses and job searching assistance, such as: • Resume writing • Interview techniques • Identifying transferable skills • Reverse marketing to potential employers. Once a job seeker has been placed into employment, the provider will support the new candidate and the employer, ensuring that the transition to employment goes smoothly and provides individualised on-the-job support and offsite mentoring as required.
HOW TO REJOIN THE WORKFORCE AFTER ACQUIRING A DISABILITY PRACTICE MAKES PERFECT – To increase your confidence and to make sure you’re comfortable with tasks that could be given to you at work, practise skills that you have previously used in employment. This could include being physically active for as long as you would need to be at work, completing activities that make you concentrate (such as computer games, watching films, reading books or doing crosswords), and taking notes when using the telephone. FIND WHAT WORKS FOR YOU AT WORK – Implement processes, tools and shortcuts at work that tailor the task to your ability. For example, your memory span might be short, so make use of external memory aids such as note taking and recording devices to help you retain information. SET UP SUPPORT SYSTEMS – To make your transition to work as smooth as possible, it’s important to establish a tight knit support network that will be able to help you. This could include a DES employment consultant, a return to work coordinator, a fellow colleague or family member. Be sure to keep communication channels open between yourself, your support network and your employer to ensure that any concerns or unforseen workplace issues can be resolved quickly.
What can employers do to support someone returning to work? There is a misconception that hiring a staff member with a disability can result in a lack of productivity, high absenteeism and health and safety issues, but this is not the case. It has been found that people with disability have comparable levels of productivity and skills to their colleagues without disability. Generally speaking, employees with a disability have the following qualities: • lower levels of absenteeism • use less sick leave • have low turnover • demonstrate high levels of loyalty • have similar productivity to other employees. Organisations who hire an employee with a disability are often well regarded by their staff as being a good employer, and have increased levels of customer and staff loyalty. They typically have an increased awareness of workplace practices and conditions for all employees. Employers who work with a DES provider to employ a job seeker with disability are able to access federal government funding and expert advice on workplace modifications, specialist equipment and technology, wage subsidy assistance, disability awareness training and work-based personal assistance. With support from family and friends, employers and employment service providers, it is possible for a person with acquired disability to return to meaningful long-term employment and to spring out of bed on a cold winter’s morning, excited for what their work day holds for them. Contact MAX Employment Customer Service Centre on 1800 807 505. MAX Employment has been assisting people return to work for more than a decade, and has over 100 sites across Australia. Visit their site at www.maxemployment.com.au
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Easy targets Anyone with an invisible disability is still an easy target by the misinformed and judgmental
Recently, a friend of mine with an Acquired Brain Injury told me about the aspersions many people were casting upon her character due to her being on a Disability Support Pension (DSP). A number of different individuals who had come into contact with her had suggested, either directly or obliquely, that since her condition was not apparent (hence the description invisible disability), she should be looking for paid employment. I was incensed! This young woman has a number of neurological and neuro-psychological impairments as a result of complications from a stroke some years ago. The myth of bludging on the pension A pension is not based on flimsy, unsubstantiated medical grounds. Even a person with a documented long-term illness cannot necessarily receive a disability pension. The impairment needs to meet a large number of criteria which impact on the capacity to find work and hold a job. The disability is usually permanent with little or no chance of recovery, therefore preventing the person from being employed. Invisible disabilities I have written before on how brain disorders can lead people to think we make bad employees, when the issue is we are struggling with range 21 / B R I D G E M A G A Z I N E
of cognitive problems such as fatigue, lack of concentration and memory problems. A bit of politics & philosophy Modern economics, and to a large extent our politics, is based on harnessing the usefulness of others. The danger of this approach is a potential lack of humanity if the individual becomes nothing more than a cog in the machinery. Taken to an extreme, this approach means that people with a disability have no worth in society if they are unable to work for a wage. At the very least, it means many will judge those of us with an “invisible” disability like a brain injury. Surely if we look “normal” then we must be cheating the system if we are on a pension!
A lack of understanding The finger pointing levelled at my friend is not really about her, but rather about the lack of understanding that exists in the wider community. The Great Depression of the 1930s led to the provision of social welfare for the sick, elderly and unemployed where there was a genuine need. My friend does not need to hang her head in shame. She can be thankful that there are enough citizens out there who want to have the safety net of social security in place for people like her who fall through the cracks of societal expectations. Gerowyn Hanson is a regular contributor to Synapse and passionate advocate for people with a disability. This is article is adapted from her blog which you can visit at http://gerowynhanson.wordpress.com
COMPENSATORY STRATEGIES Much of rehabilitation after a brain injury involves learning compensatory strategies – techniques that will compensate for lost skills that will never return, or only partially. Examples of these include: • Note books, calendars, and post-it notes for short-term memory loss • Beating fatigue by performing tasks for short periods at the best time (e.g. mid-morning) • Breaking complicated tasks down into manageable pieces • Relearning social skills. These strategies become crucial for anyone wanting to return to work. The rehabilitation team will often work with the employer to advise on the difficulties you are likely to face, and the compensatory strategies needed to cope with working again. Visit www.synapse.org.au to read our comprehensive range of fact sheets that cover many compensatory strategies.
How long will these problems last?
An approximate guide to the recovery process by Angelle Sander You probably noticed that your loved one made a lot of gains in the first few months after injury. In the hospital, you were probably relieved and hopeful the first time he or she walked, talked, or showed any improvement. Your family member may still be improving, but not as fast as earlier. Many family members have questions about what they can expect in the long term. Below are some general “rules of thumb” about what improvements to expect. Please keep in mind that everyone is different, and that your family member may show somewhat different improvement. Six months after the injury The fastest improvement happens in about the first six months after injury. During this time, your family member will likely show many improvements and may seem to be getting better all the time. Six months to one year You will still notice some improvements happening between six months and one year after injury. However, the changes may not happen as fast as the ones you first saw, and you may notice that the changes are smaller. One to two years The period between one and two years after injury is different for different people. Some people show more improvement. This may be especially true if they had a lot of medical problems during the first year that get better in
the second year. Other people start to level off and show very little improvement between one and two years. For people who show improvement, the changes usually happen very slowly. Two years and on Most professionals agree that people usually show little change after two years. Most people continue to have some problems, although they may not be as bad as they were early after injury. Some common problems that tend to last longer are slowed thinking, memory and attention problems, and problems getting organised. However, many people are able to return to their activities in spite of problems. For example, people may go back to work, return to school, take care of their household, or return to other activities that they did before injury. What influences the degree of recovery? What makes the difference in who can do these activities? This depends on: • how severe the injury is • what part of the brain is damaged • the strategies they use to compensate • the support they have. The type and severity of the brain injury is the part that you and your family member cannot control or change. However, part of it is also due to whether your family member can use your help to get around the problems. Two people with the same problems may have different outcomes depending on how they go about getting around their problems.
The amount of support they have can also make a difference. For example, a person with a boss who is understanding and willing to help is more likely to go back to work and keep their jobs. Having support from family and friends can also help. Many people with injury become socially isolated. Their friends often stop coming around and they feel lonely. You can help them to find other supports, such as friends, church groups, brain injury support groups, etc. Even when your family member improves, they may still need help with certain things from time to time. One of the things people often need help with is handling finances. They may need help remembering to pay bills or keeping up with their checkbooks. They may have difficulty with spending more money than they have or making financial decisions. If you are really worried about your family member’s ability to handle their money, you may want to talk to a lawyer about obtaining legal guardianship. This means that you can make decisions for them in order to protect them from being taken advantage of. This excerpt from “Picking up the pieces after TBI: a guide for family members” is reproduced with permission of Angelle M. Sander, Ph.D., with Baylor College of Medicine and TIRR Memorial Hermann. This free publication is available for download from www.tbicommunity.org or www.brainline.org. The work was funded by Grant No. H133B03117 from the National Institute on Disability and Rehabilitation. 22 / B R I D G E M A G A Z I N E
The forgotten survivor September 19, 1989, a date I will never forget, is the day my whole life changed
I am the spouse of a severe brain-injury survivor. The past eighteen months have been a time that is most difficult to put into words. No one (except for another spouse) can fully understand the pain, frustration, loneliness, isolation and exhaustion that I have felt. I have had to continually fight for what is rightly ours — payments by insurance, disability benefits and the continued best management of my husband’s care. I am convinced that not all those who work with brain injury survivors are fully knowledgeable about the day-to-day behavioural problems a family member encounters. While the majority of professionals do have empathy, families are not always “listened” to through the long journey of rehabilitation. In order to understand, from a family member’s perspective one must truly listen and then risk the price of becoming involved. It is much easier to disregard problems voiced by the family, or to make judgemental statements about family interactions. The biggest breakdown in communication I’ve found is when a patient is discharged from the rehabilitation centre. The family is left with no support system as they enter into one of the most crucial times, in terms of rehabilitation, since the injury. As a spouse, I have watched as my husband received treatment from every aspect of acute care and continued rehabilitation; ICU, surgery, various therapies (physical, occupational, recreational, and speech) as well 23 / B R I D G E M A G A Z I N E
as psychological and vocational counselling. Meanwhile, I have remained on the sidelines, dealing with exhausting phone calls, paperwork and case management. In addition, I’ve driven thousands of miles to visit my husband and provide continuing rehabilitative care. As if this is not enough, I’ve also had to struggle to maintain a home, keeping some semblance of normal family life, being both mother and father to our children as well as a caregiver. Another burden placed on the family is the role of educator. It’s necessary to educate other family members, friends and even some professionals on the devastating effects of traumatic brain injury. At times, I’ve wanted to wave a flag and say “Don’t you see me? I’m here and I’m hurting also!” I would like to say that while we are attempting to provide survivors with the best comprehensive care possible, we are forgetting the other trauma victim — the family. We must address the family and their needs, and attempt to provide them with better immediate education and support systems. We must view the whole family as injured, for truly they are. I have found that resolutions to problems do not come easily so it’s necessary to live up to the term “survivor.” Don’t give up! Resolve to make a difference: Educate others — then they will have no excuse for their ignorance. Seek good counsel — employ a lawyer knowledgeable about brain injury to aid you in the resolution of problems that are too big for
you to handle alone. Channel your anger — focus on worthwhile ventures, become an advocate, and call your representatives and politicians. Be informed of current legislation and do your part to be heard. Don’t lose confidence in yourself — remember that criticism comes freely to the one who serves as primary caregiver. Remember that it’s easier to judge another when you haven’t walked in their shoes. Try not to take it personally. Forgive others — try to restore broken relationships. You’ll need all the support you can get. Demonstrate your knowledge of brain injury — you should expect to be treated as an equal member of the rehabilitation team. If you are not being heard, seek a new professional support system. Remember, this is your loved one that you are concerned for — you know them better than anyone else. You live with them and face all the day-to-day problems that no one else sees. Network — get into a support system with others who do understand. I believe that we can network and support each other especially as spouses of brain injury survivors. We can reach out and encourage each other as we all share similar circumstances. - Nancy Crinnion, R.N. No part of this article may be reproduced or retransmitted in any manner and/or for any reason without the express permission of TPN, Inc. Email them at: TPN@tbi.org
Young people in nursing homes This is a serious social issue, which can and must be fixed There are too many young Australians stuck in nursing homes. An estimated 3500 people under the age of 60 live in nursing homes, which are not suited to their needs. Many of these people are socially isolated and have been forgotten. The facts It is a sad fact that 82% of young people living in nursing homes never go out to visit their friends. Nearly half never go on trips to the shops or the movies or sports events. Here are some sobering statistics about young people living in nursing homes: • 56% don’t have a say in when they go to bed • 52% won’t be visited by a friend this year • 27% are parents of school-aged children • 13% hardly ever go outside. The following quotes illustrate how moving from a nursing home to an environment that is more home-like has given these young people the ability to make everyday choices for themselves. These people participated in the “My future my choice initiative” and were part of the Summer Foundation’s evaluation of that same program: “Right now, you know, I love it. I can play music loudly and I can play my own music.” “Clean my own clothes. . . just chuck them in the washing machine, put some powder in it, and psssh.” “You can make your own mind up what you want for tea. what you want for lunch or whatever.”
“Just being yourself, eat when you want to eat, just be who you want to be.” “At first, it was unusual to go out the front door but now I’ve done it quite often and it’s just. . . it’s not so formal. . . you’re free. I have a life.” “It feels like home. I never could say I wanted to be in a nursing home. I could never call it ‘home’.” What is needed Young people in nursing homes want a range of creative and innovative solutions to enable them to actively participate in the community and have a real choice about where they live. There needs to be systemic change and a dramatic increase in the number of supported housing options in Australia to stem the flow of young people into nursing homes. Young people with disability want to be able to make the fundamental everyday choices the rest of us take for granted: what to eat, when to eat it and what time to go to bed. They have told us they do not necessarily want to live in a group home with other people with disability, and would like to be part of the community, where they have ready access to community facilities and services. The solution In countries such as Canada, integrated models of housing have been operating successfully for over 15 years. For the past twenty years there have been various incarnations of the group home model where people with disability are expected to live
with five or more other people with disability. Group homes work for some people but not for everyone. People with acquired disabilities such as brain injury or Multiple Sclerosis often have partners and/or school age children – their needs are therefore not met by group homes. In addition to building more housing, we need to expand the range of housing options so that people with disability have real choice about where they live. Since 2008, the Summer Foundation has been working on the development of the next generation of housing and support for people with disability in Victoria who require access to 24-hour, on-call support. A similar model began several years ago as a Synapse initiative in Queensland. The National Disability Insurance Scheme (NDIS) can play a key step in providing independence for young people with disabilities as it could provide the necessary funding to finance supported accommodation options. The Summer Foundation is committed to growing a movement that will resolve the issue of young people living in nursing homes. Supporting, informing and empowering people with disability and their families is key to resolving this issue. Three key areas of focus are conducting and fostering research, supporting people with disability to share their stories, and developing integrated housing demonstration projects. Visit their website for more information: www.summerfoundation.org.au
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My adult child has a brain injury A brain injury can be a devastating experience for the parents of an injured adult child
Parents say they have had no time to prepare for the many changes that occur to their lives as a result of a son or daughter’s brain injury. Often, now that their family have grown, parents are at the stage of planning for their own future. It seems that life and those plans disappear in an instant. Changes in personality and behaviour of their child can be very disconcerting for parents. Displays of childish behaviour can be embarrassing, while mood swings and having to provide guidance and feedback can be challenging. Possible reactions Like all family members, parents can experience many emotions coming to terms with the fact that their adult child has acquired a brain injury. These could include: 25 / B R I D G E M A G A Z I N E
• Shock and denial at the immediacy and severity of the injury and the consequences of brain injury / changes to your child • Anger and frustration at the circumstances of the injury, of how it has impacted on your life and how your child’s life will change • Loss – changes to plans, financial losses, grieving the loss of the future parents had anticipated for themselves and their children • Resentment and guilt – resenting the changes, feeling that you could have “done something better”, feeling guilty for feelings of anger, resentment and frustration • Loneliness and isolation – many parents report the gradual withdrawal of their friends as their lives have now taken different directions with different priorities • Mourning/chronic sorrow – Grieving
processes rarely end, as a loved one remains in your life, but often as an altered person. It is common to mourn the personality and characteristics that have been lost while learning to relate to a different person. Mourning is never completed but can begin again with reminders of what has been lost. Some parents say that they have lost interest in things they used to enjoy. Relationship & role changes Depending on the severity and nature of the brain injury relationships can change in several ways. A brain injury places strain on many relationships and marriages. Concern about a child’s relationships, practical issues of how to help, and uncertainty about how the situation will work out is common.
USEFUL STRATEGIES FOR PARENTS • Become involved in the hospitalisation and rehabilitation stages • Learn as much as possible about the brain injury to assist developing realistic expectations • Realistically consider the strengths of individual family members • Identify areas where assistance would be beneficial and asking for help • Talk about concerns with other family members/friends • Take time to deal with the effects of the injury • Keep daily routines as normal as possible • Be open to involvement in support groups and counselling • Spend quality time with other family members, and develop a network of friends and activities • Use supports such as regular respite when needed to rest, rejuvenate, and care for yourself.
Tensions between parents themselves can occur. Different attitudes and expectations and different ways of coping can aggravate this. It is possible that the injured adult may move back home and parents may become carers. If this involves basic personal care and cueing with daily living tasks, it may be like parenting a child all over again. The relationship is no longer an adult relationship and this can be especially difficult if there are challenging behaviours as well. Having carers or lifestyle support workers coming into the home on a regular basis can place a strain on relationships as parents feel that their lives are less private. Help with grandchildren may be needed when one parent has a brain injury and the other is committed to a significant caring role or full-time employment. Parents often worry about how the brain injury has affected their relationships with their other children. Some parents find themselves being more over-protective of their other children. Others worry that they are neglecting their other children and feel their resources (emotional, financial, time) are stretched in this regard. Relationships with friends and extended family may also change especially if parents feel that others do not understand the brain injury. Many parents find that roles in the family change as a result of their adult child sustaining a brain injury: • Parents may have to take on a carer role with their adult son/daughter • Previously valued roles may change e.g. giving up work to be a carer, loss of retirement plans • Grandparents may become more involved in their child’s own family as a result of the brain injury and may even take on the parenting role with their grandchildren • Parents may need to take on a more supportive role in relation to the spouse of their son/ daughter • Parents may need to help educate and support other family members and friends about brain injury.
Practical consequences of a brain injury There may be many practical consequences of the brain injury. At times a brain injury will result in challenging behaviour which requires understanding of the reasons for the behaviour and strategies to manage them. Professional assistance may be required in some cases. Parents may need to assist financially, particularly if the injured person was the primary income earner. This may result in an inability to meet previous financial commitments such as mortgage repayments, car payments, childcare or school fees. Parents may find that they need to be involved in provision of: • Accommodation • ‘Hands on’ assistance e.g. feeding, bathing • Transport to appointments and activities • Assistance with managing finances and making decisions • Assistance with maintaining pre-existing relationships • Social support and social outings. Remember to ask other family members or services to provide assistance. Encourage the person with a brain injury to gain as much independence as possible as it is important to allow them to learn new skills and to be as independent as possible. Be guided by the professionals working with them. Remember that a brain injury does not change everything about a person and some personality traits, behaviour traits and interests will remain unchanged. This is fact sheet is reproduced with the permission of ABIOS (Acquired Brain Injury Outreach Service). Visit www.health.qld.gov.au/abios/ to see their full range of fact sheets. ABIOS is a specialist community-based rehabilitation service to enhance the service system for people with Acquired Brain Injury (ABI) and their families.
Inflexibility & obsessions Rigid thinking, inflexibility and obsessive behaviour after a brain injury are usually due to damage in the frontal lobes. We take it for granted, but the ability to see the world from someone else’s point of view, tolerate uncertainty, or keep a balance of interests in our lifestyle are all complex cognitive skills. Unfortunately, the frontal lobes are very commonly affected in traumatic brain injuries, so these issues frequently go hand-in-hand with lack of selfawareness, anger, depression, fatigue and reduced social skills. The person may lose the ability to jump from topic to topic in conversation, and becomes bogged down in talking about a favourite issue. Obsessive behaviour is often worsened by anxiety. What the family can do Often the hardest part for a family is accepting that these new character traits are not intentional. Brain injury is often called the ‘invisible disability’ – because the injury can’t be seen, it is hard to accept that a loved one has seemingly become arrogant, opinionated, intolerant of others and obsessed with things everyone else finds boring. Understanding the effects of the brain injury often brings families to a point where they can accept the changes and enact strategies to manage the situations that arise. Try not to respond to difficult situations with criticism or an angry outburst. Families may need to understand that their opinions, ways of doing things and favourite interests will not be accepted. Instead of feeling hurt or angry, it is best to distract the person with other topics or activities, or respond with any chosen behavioural strategies that have been developed. It may be worth getting in touch with your local Brain Injury Association to develop a behaviour management program. In some cases, a brain-injured person can be very skilled at manipulating their family emotionally. If their demands aren’t met, they try various strategies to get what they want — such as threats, pleading, criticising the lack of compassion, or sullen silences. Family members are often surprised that their loved one’s skills in manipulation are so effective when their overall social skills have dropped significantly. In these cases it is vital for the family to have agreed on boundaries for acceptable behaviour, not be drawn into arguments. Families can also look for underlying causes. Anxiety and insecurity can worsen any of these behaviours, but can be hard to counteract. Where possible, look for the triggers that worsen the behaviour, and see if these can be avoided or reduced. Examples of this may be insecurity in new social environments, meeting strangers, or a change in routine. If there is a local support group for survivors of brain injury, it may help if they can go along. Sometimes seeing similar behaviours and attitudes in others can bring about some level of self-awareness.
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Never say never I was in charge of a child whose brain function was completely shut down except for her basic needs for staying alive. According to the CT scan, she could neither see, hear nor know anything. All I could do each day was hug her, talk to her, rock her, sing songs to her, pick her up and put her on my lap. However, then she started moving her limbs whenever she heard my footsteps. She also started smiling when I tickled her on her face, singing the Japanese tickling nursery rhyme. Finally she began to smile even before the tickling part, and her expression of joy indicated a consciousness and that she was understanding the nursery rhyme. Yuri-chan, had suffered an accident while having a bath and the CT scan showed nothing but a blank in her brain. At first she gave no reaction to any stimulation. But after a while, she had begun responding with her eyelids. Then I was sent to another school and did not see her for a long time. However, unexpectedly one day in the hospital I met her again. Surprisingly she was sitting up in a wheelchair and listening to her mother talking. It was such a joy to see her recovery and to feel her mother’s love and care for her. From my involvement with other children who were also in this so-called vegetative state, I now strongly believe that the most important thing for the carers is to understand that no matter how unconscious the patients look, they may be able to understand, hear and see most things, and that everyone has feelings. Over the last five years Kakko-chan has been the main carer for her colleague, Toshiya Miyata (Miyapu) who suffered from a large brain-stem haemorrhage, and developed this locked-in syndrome. At first the doctors had told her that Miyapu would live only three hours after his stroke and he was admitted to hospital. After surviving for some weeks, the doctors then told her that he would never 27 / B R I D G E M A G A Z I N E
regain consciousness and that his body would remain paralysed for life. However, Kakko-chan believed that he could recover and so she tried to rehabilitate him herself. He can indeed now talk with a communicating device and go for outings in a wheelchair. His aim is to go home and live there by himself with support. Through her experiences, she has learnt that there may be a way for patients in a so-called vegetative state to recover. Although not in the medical field, she provides methods from the educational and welfare fields. She is very passionate about giving people this knowhow, having been told too many times about people left bedridden without communication or rehabilitation. The Snow White Project With the help of others she has founded the Snow White Project which aims to glean and spread information on ways to assist recovery from the so-called vegetative state. It covers communication methods, oral care, eating, rehabilitation methods, nursing care and more. Advice for carers Some simple advice to carers: • Keep talking to and encouraging the patient • Stimulate their hearing with music and voice, avoiding multi-sound contexts • Work on the sense of smell, such as pleasant
aromas in the room • Clean and stimulate the inside of the mouth • Sitting up - as much as possible • Moving arms and legs • Skin care • Provide pressure to fingers/toes to avoid deformity • Take the patient out in a wheelchair • Keep detailed diary records • Do the rehabilitation with joy. Miyapu’s recovery has been filmed from four months after he had his stroke. The resulting Japanese documentary film is called: “Blazing a New Trail ~ Towards the day when miracles become commonplace”. This is a heart-warming documentary film which shows us the importance of belief, love, and never giving up hope. Screening for the first time in Australia, this documentary film (with English subtitles) will be shown on consecutive nights in Melbourne and Sydney, 14 June and 15 June 2014. In addition, Kakko-chan will be present to talk about her touching experiences with her students and Miyapu. Her stories are truly moving. This article by Junko Ichii Blades has been translated from Japanese. There is an English-language site for the Snow White Project at http://shirayukihime-project.net/en/ but please note that translations may be imperfect.
PLEASE MEET KAKKO-CHAN FROM JAPAN Katsuko Yamamoto, popularly known as Kakko-chan, is a speaker, writer and school teacher. She has been working in special needs schools in Japan for 35 years and believes that even in a vegetative state people have feelings and thoughts, and in many cases can see, hear and understand. However, she says “I am afraid that this is still not common knowledge in society. It is unbearable for me to think that some patients cannot communicate, and therefore have to give up their recovery process, simply because the carers do not have this information and know-how.”
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our message becomes and the more support we can offer.
Because BANGONABEANIE supports one of the largest and most disadvantaged disability groups in Australia, and works to transform an â€˜Invisible Disabilityâ€™ into a very visible one.
Because all money raised through BANGONABEANIE goes towards providing services for people with Brain Injury, helping improve their quality of life.
Like to get involved? Just jump online and buy a beanie at BANGONABEANIE.com!
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National Disability Insurance Scheme The National Disability Insurance Scheme (NDIS) aims to provide longterm person-centred care and support to all Australians with a significant and ongoing disability. It has the potential to meet the support needs of many Australians who have acquired a brain injury or other disability. The NDIS offers a new way of providing community linking and individualised support for people with permanent and significant disability, their families and carers. It emphasises allowing people with a disability to have choice and control over decisions where possible.
FAMILIES & CARERS The NDIS will provide information, referral and linkage to ensure families and carers are able to access supports available in the community to assist them in their role. The NDIS processes will enable people with a disability to include significant others as part of discussion about the necessary supports for now and into the future. Guardians or nominees of people with disability play an important role in the NDIS to represent the interest of the person and they can contact us on behalf of the person.
PEOPLE WITH A DISABILITY If you meet the access requirements you can access funding for the reasonable and necessary supports needed to enable you to achieve your goals. If you do not meet the access requirements, and you live in a launch site, the National Disability Insurance Agency (NDIA) may be able to provide you with information and referral to other supports.
OUR CONCERNS ABOUT THE NDIS The NDIS has the potential to dramatically change lives for the better. However, we have concerns about various facets of the scheme. Rorts Vigilance will be needed to ensure that funds go to improving lives, and diverted into the pockets of others. It is interesting to note that websites from overseas have already sprung
ADVOCACY There are three broad forms of individual advocacy available to NDIS participants. SUPPORT TO ACCESS MAINSTREAM AND COMMUNITY SERVICES: The National Disability Insurance Agency will provide information and referral to participants to enable people with disability to engage in mainstream and community activities and develop self-advocacy skills. LEGAL REVIEW AND REPRESENTATION: This will include advocacy on Agency decisions, for example, an appeal against a decision not to allow a person access to the Scheme. Advocates will speak on behalf of a participant, or act for or represent them in processes. SYSTEMIC ADVOCACY: The National Disability Insurance Agency will work with community to achieve positive change to inclusion for people with disability. This work will, in part, be a key focus for the local area coordinators involved in the scheme at the local level. At the national level the Agency will work to influence national strategies and how they enable positive inclusion.
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up that offer host provider services – working with a client and their family to help them to self-direct their disability supports and services. While these may be legitimate businesses, we hope the potential for rorts is minimised. Quality vs quantity of care Emphasis will rightly be placed letting clients choose their support services where possible. However, there may be a tendency to focus on the cheapest service providers instead of the most appropriate e.g. support workers from the cheapest service provider may have less training and not be equipped to deal with challenging behaviours, or the issues with specific disabilities. Host providers working with a client and their family will need to aware of the need for trained experienced support workers when dealing with complex behaviours. Quality of life The NDIS is meant to improve the lives of Australians with a disability, as well those who care for them. How do we measure whether quality of life is being improved through the services that are being funded? At Synapse, we are working on ways to measure whether we are improving a client’s life through: • Effectiveness – measuring, client satisfaction, quality of life, and changes in behaviour • Efficiency – economic models • Reconnection – the degree to which a client is included into the local community. Visit www.ndis.gov.au to find out more about the National Disability Insurance Scheme.
Living alone with dementia Practical tips from Alzheimer’s Association Queensland
Many older people choose to remain living in their own home alone. This decision is based on a number of reasons. Most who make this decision do so to remain independent. A few have no family to whom they can turn for assistance, while others simply do not wish to live with their family or believe it will make life difficult for all concerned. Residential care or nursing home placement is certainly something few, if any of us, ever wish to consider for ourselves. You have the right to stay in your own home if you wish. For many, independence is of greater priority than physical safety. Since Alzheimer’s disease and other dementias are progressive diseases, the physical and behavioural symptoms experienced will gradually get worse over time. It is therefore important to plan in advance for any assistance you may need to help maintain your independence. Consider the following suggestions: • Ensure work, financial, legal and health matters are addressed as soon as possible after receiving your diagnosis. If left until late in the disease, the power to make decisions about these matters may be taken away from you. • Inform your bank if you have difficulties with keeping track of your accounts, bill payments and other banking needs. They may provide special services for people with Alzheimer’s disease. • Arrange for direct payments of Social Security cheques, pensions and the like, into your bank account.
ALZHEIMER’S DISEASE Alzheimer’s disease is the most common cause of dementia and accounts for 50% to 60% of all cases. It destroys brain cells and nerves disrupting the transmitters which carry messages in the brain, particularly those responsible for storing memories. It was first described by the German neurologist Alois Alzheimer in 1907. He wrote of a physical disease in which brain cells are destroyed. The appearance of this destruction is referred to as “plaques and tangles”. During the course of Alzheimer’s disease, nerve cells die in particular regions of the brain. The brain shrinks as gaps develop in the temporal lobe and hippocampus, which are responsible for storing and retrieving new information. This in turn affects people’s ability to remember, speak, think and make decisions. The production of certain chemicals in the brain, such as acetylcholine is also affected. It is not known what causes nerve cells to die.
• Stay in close contact with your doctor and specialist for regular reviews of your medical situation. There are other treatable illnesses which, if left untreated, can exacerbate the symptoms of dementia. • Seek information about getting assistance in the home with housekeeping, general home maintenance, transportation and home nursing. • Plan for home meal deliveries if available in your area. • Arrange regular home maintenance checks e.g. through Home Assist Secure. • Have a smoke alarm fitted and check it regularly. • Leave a set of keys to your house with a trusted neighbour. • Keep a list of emergency numbers, in large print, next to the phone. • Ask a friend or relative to assist in arranging your clothes and drawers to make it easier for
you to find what you need to get dressed. • Label cupboards and drawers with words or pictures that describe their content. • Arrange for a daily visit or telephone contact by friends, relatives or a community worker to remind you of meal times, appointments or to take your medications. • Label photos with the names of those you see most often. • Mark days off on a calendar to keep track of time. Maintain your daily routines wherever possible. Reproduced with permission of Alzheimers Association Queensland. Visit www.alzheimersonline.org for a wide range of fact sheets and their support services or call their free Helpline on 1800 639 331.
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