Sye13 889 bridge vol 12 pages

VOL-12

In this issue:

ACCOMMODATION Promoting independence How to find housing Adapting your home

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Promoting independence A key step to a better quality of life

BRIDGE VOLUME 12 – September 2013 ISSN 1448-9856 General Editor: Contributing editors:

National Development Manager:

05

Barry Morris Clare Humphries Lisa Cox Rick Bowie

How to find housing

Glen Farlow

A step-by-step guide from ABIOS

Synapse PO Box 3356 South Brisbane 4101 P: 61 7 3137 7400 F: 61 7 3137 7452 E: info@synapse.org.au W: http://synapse.org.au

Bridge is produced by Synapse (trading name for the Brain Injury Association of Queensland).

Published quarterly, it welcomes contributions and news items, especially from members.

Advertising rates are available on request.

Synapse is dedicated to improving the quality of life of people living with and affected by Acquired Brain Injury, or people whose behaviour challenges our understanding.

VISUAL DIFFICULTIES: 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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Life after death Is there life after a brain injury?

21

INDEX 03 Accommodation options

The good, the not-so-good & the scarce

05 Promoting independence

A key step to a better quality of life

07 Young people in nursing homes

Good news on a long neglected issue

09 Rebuilding lives

A support worker’s experiences

10 A good night’s sleep after a brain injury

Tips for quality shut-eye

11 Adapting your home

Modifications for physical disabilities

12 How to find housing

A guide from ABIOS

13 Ways to reduce stress

Self-care strategies for carers

15 Learn how to solve problems better

A common issue after a brain injury

17 The forgotten survivor

Partners & spouses are affected too

18 Living with traumatic brain injury

Some of the common challenges

19 The Housing Toolkit

Free resource from the Summer Foundation

20 Hormonal imbalances after a brain injury A less common outcome from a brain injury

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21 Life after a death

Yes, there is life after a brain injury

23 What a beautiful noise

Personal story about sensory overload

24 Best practice

Synapse Research & Development Unit

26 50 lives 50 homes

Disturbing insights into homelessness

27 What’s wrong with this picture?

Relationship problems

29 To learn or not relearn social skills

A difficult choice for some post-injury

30 Alzheimer’s disease

From Alzheimers Association Queensland

bridging THE GAP Jennifer Cullen, CEO of Synapse

Housing the Invisible Synapse believes that every person deserves quality accommodation and individualised support to achieve and maintain the greatest possible degree of involvement with society.

For those with complex and challenging behaviour, our hospitals are prisons, and our prisons are treated as disability accommodation.

Synapse has evidence that through comprehensive behaviour support plans, based on the needs and communication style of an individual, the cost of care can be reduced significantly. There is no reason that, just because you have a disability, you cannot own your own home and become a tax-payer again.

Through our work and the work of our affiliates across Australia, we know that the current statistics for unmet accommodation services don’t mirror society. It grossly underestimates the real numbers, and many

people with an ABI are either misdiagnosed or undiagnosed. Unfortunately it is often the most vulnerable people in the community affected by a lack of appropriate accommodation, including: • Young people in residential aged care / nursing homes, • Indigenous Australians, • Homeless people, • Survivors of domestic violence, • People in the criminal justice system.

We need a fundamental change in service delivery; one based on the needs of the individual, where the cost of care is not just measured in dollars spent, but also in dollars saved and outcomes for clients.

In Closing the Gap on Indigenous disadvantage, Synapse is also addressing Aboriginal and Torres Strait Islander issues through innovative models of culturally relevant accommodation.

While DisabilityCare Australia is looking to address many of these issues, there will still be a large number of people who will not receive services under this system, aside from the fact that there are still several years until it has fully rolled out. Through discussions with our clients and their families, we have found that they want individualised “support” services, not just “care”. Currently, we are looking to expand our accommodation services, to provide a home for the tens of thousands of young Australians who do not have a choice about where or how they live. At Synapse, we believe that everyone deserves a choice.

Jennifer Cullen CEO of Synapse

AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS VIC

QLD

Synapse Tel: 1800 673 074 Email: info@synapse.org.au Web: synapse.org.au

AUS

TAS Brain Injury Australia

Tel: 1800 272 461 Email: admin@braininjuryaustralia.org.au Web: www.braininjuryaustralia.org.au

NSW Brain Injury Association of NSW

Tel: 02 9868 5261

Email: mail@biansw.org.au

Web: www.biansw.org.au

SA

BrainLink Services Tel: 1800 677 579 Email: admin@brainlink.org.au Web: www.brainlink.org.au

WA

Headwest Tel: 1800 626 370 Email: admin@headwest.asn.au Web: www.headwest.asn.au

Brain Injury Association of Tasmania Tel: 03 6278 7299 Email: enquiries@biat.org.au Web: www.biat.org.au

NT:

Somerville Tel: 1800 007 007 Email: scs@somerville.org.au Web: www.somerville.org.au

Brain Injury Network of South Australia Tel: 08 8217 7600 Email: info@binsa.org Web: www.binsa.org

ACT

National Brain Injury Foundation Tel: 02 6288 1117 Email: manager@nbif.org.au Web: www.nbif.org.au 2 / BRIDGE MAGAZINE

Accommodation options Suitable accommodation for people with a brain injury is scarce so it pays to look ahead and plan early. The type of accommodation needed will mostly depend on the level and type of support needed. For example, a person with high medical or nursing care needs would not be appropriately supported in a hostel. The options available to a person with Acquired Brain Injury (ABI) and their family may be impacted by: • Funding available to the person • The family’s social support network • Capacity of the family to look after the person in the home • Services available in the area • Level and type of support needed.

The basic types of accommodation available are explained below, on a continuum from high to low levels of support. The reason for this continuum is because it makes allowances for ongoing recovery from a brain injury.

Why a brain injury complicates things Why is it difficult to provide accommodation options for people with a brain injury? First, the

THE USUAL OPTIONS NURSING HOME

LONG-TERM RESIDENTIAL CARE

SUPPORTED ACCOMMODATION

LIVING WITH FRIENDS OR FAMILY

This simply shouldn’t be an option, especially for younger people with a brain injury. But nursing homes often are the last resort for people with a severe brain injury when they can’t afford anything else.

Governments occasionally do fund a small number of these facilities specialising in brain injury. There are usually very long waiting lists so it is important to think ahead if your loved one has a severe brain injury and may need this type of long-term accommodation.

Slow-stream rehabilitation units also offer a measure of ongoing rehabilitation — a great idea as improvements are still possible even years after the injury.

This normally involves houses in the community where support workers provide the required amount of support and supervision. This can vary from around-the-clock care, to a few visits each week.

Families may choose this option because they would prefer to care for their loved one personally, or because they find the available alternatives too unsuitable. Getting plenty of support is crucial in taking on this demanding role. Access as much respite care as possible to get regular breaks; self care for carers is critical to the success of this option. Check to see whether you are eligible for the Carer’s Pension or any other government allowances.

Apply regularly for funding of support workers who can work with you.

There was finally recognition of this issue with the Younger People in Residential Aged Care Program (YPIRAC), which aimed to provide alternative accommodation and support services for some younger people with a disability who are inappropriately living in, or at risk of entering, residential aged care. But the program was discontinued and little has changed in this regard.

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Unfortunately these facilities are almost always in capital cities so family members may have to travel long distances to visit.

Government services do provide this style of accommodation to people with a range of disabilities, but sadly brain injuries are often overlooked, or not given the necessary assessments, rehabilitation or person-centred support / behaviour plans to maximise their recovery.

Non-government agencies will sometimes receive funding to set up brain injury-specific supported accommodation. These are very rare, and waiting lists are usually very long.

DETACHED DWELLING

A creative alternative chosen by some families is to build a detached dwelling so that their loved one can live semiindependently, but have ready access to family support. Another option is to buy or rent a unit nearby.

effects of a brain injury are incredibly diverse, so support workers need to be trained to cope with a wide range of cognitive and physical issues.

Next is the fact that many people make dramatic improvements with appropriate support, so accommodation options need to be flexible. Ideally people should be able to move to accommodation that suits their needs as they become more independent and relearn life skills. Historically, government and welfare groups have responded poorly, if at all, to the accommodation needs of people with a brain injury, in part because these diverse needs require a sophisticated response.

Where to from here?

While the basic options are covered below, they will vary from State to State. Contact the Brain Injury Association in your State to discuss the range of options available in your area, and also the funding options available.

examples of brain injury-specific accommodation options How should it work? In an ideal universe, people who require ongoing support should emerge from hospital or rehabilitation into accommodation that is tailored to suit their needs. This means that the design of the accommodation, amount of support and type of support are all focused on maximizing the person’s ongoing recovery and independence.

There are signs of hope around the world. The Brain Injury Rehabilitation Trust in the United Kingdom now has more than a dozen accommodation options. Rehabilitation is based on the neurobehavioural model and focuses on independence and regaining previous roles and activities. (www.birt.co.uk).

In Queensland, Australia, Synapse has its Lawnton Transitional Accommodation which provides specialized support for individuals with complex and challenging behaviours (www.synapse.org.au).

Another Queensland organisation, Open Minds, provides specialist residential support under two models – a range of 24/7 supported co-tenancy models and in-home residential support, with the homes are provided by the Department of Communities – Housing and Homelessness Services.

Australian Home Care provides shared supported accommodation services in both Victoria and New South Wales for adults with Acquired Brain Injury, multiple sclerosis and other disabilities.

These offer choice for young people with disabilities whose only option may be a nursing home (www.ahcs.org.au).

In Western Australia, Brightwater provides accommodation options in Perth metropolitan area for young adults living with a disability, from people living alone in their own home through to living with others with similar levels of need in community based group homes (www.brightwatergroup.com).

HOSTEL WITH SUPPORT

HOSTEL WITH NO SUPPORT

OWN HOME WITH SUPPORT

PUBLIC HOUSING

Hostels are typically large houses divided into small bedrooms. There are usually on-site managers who provide differing levels of supervision.

The majority of hostels provide little, if any, support. If on-site, the managers are only there to provide very basic supervision.

They are still quite expensive, but the main advantage is that there is little if any bond expected, so they provide very basic accommodation for anyone who has little besides their pension payment to rely on.

There is usually limited government funding for lifestyle support. This provides the funds for in-home support services and community access support.

Someone with a severe brain injury may be fortunate enough to afford support workers around-the-clock. In other cases it may only be a weekly visit.

Waiting lists for public housing are generally long, but may be worthwhile for those with a permanent disability who can live independently in the community. The wait list for housing is based on priority of need, which covers homelessness, inappropriate housing, or issues with accessing tenancy in the private rental market.

Hostels that do provide support will cover some, or all of the following: providing meals, supervision of challenging behaviours, laundry services and medication supervision.

Hostels aren’t suitable for people with high-level care needs such as need for nursing assistance e.g. toileting, personal care.

Many hostels cater for people with a mental illness and have psychiatric support specialists visiting on a regular basis. There are no hostels set up specifically for people with a brain injury so they are frequently unsuitable, or a compromise at best. The cost will usually be around 85%+ of the pension or benefit.

Sometimes, there may be free support through community agencies. If so, there will be very long waiting lists.

Check with the Brain Injury Association in your State on what other support may be on offer. There are other services like Meals On Wheels and community nursing that could be helpful.

Hopefully the new National Disability Insurance Scheme, DisabiltyCare Australia, will see desperately needed funding available in the future.

The options for housing range from detached houses, duplex, town houses, apartments to senior units.

Other government services may be able to provide support with rental bonds, rental subsidies, and the cost of moving.

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Homelessness Expensive housing, debt and unexpected financial problems are key factors behind homelessness in Australia. When a person or family is unfortunate enough to have an illness, impairment or death in the family, it can have a major impact on expenses, travel requirements and work commitments. Timely support can often make the difference between riding out the crisis or becoming homeless. If you or your family is in crisis then contact your local Brain Injury Association for support, or look for the Crisis Care Helpline phone number in your State.

Evacuation plans In the case of an emergency at home, make sure you have an evacuation plan and a meeting point. Be sure to practise your evacuation plan, and if moving to a new property, draw up a new evacuation plan. Keep a list of emergency contact numbers close to the phone, and have them on speed dial or any mobile phones.

Get to know the neighbours in case of emergencies, and provide them with any relevant contact numbers.

Be familiar with basic fire precautions. Install smoke detectors, at least in the kitchen and lounge room at a minimum. Consider purchasing a fire extinguisher and a fire blanket for kitchen fires. Remember when evacuating during a fire to crawl to the exit, if necessary, to avoid smoke inhalation.

Moving house Locating, accessing and moving into a new home can be a long and daunting process for anyone, let alone if you have a brain injury. The process can then be so difficult that homelessness can result simply because of the financial, emotional and cognitive resources needed.

If a move is likely, call the Brain Injury Association in your State to get an idea of all the supports that may be available. There is a reasonable amount of funding nowadays as homelessness is becoming more recognised as an issue, but it can be hard to track down exactly who can provide assistance.

Public housing does provide a secure long-term alternative that is affordable, so register as soon as possible if you think it might be a future option.

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Promoting independence A human being’s right to independence is enshrined in many types of legislation, but sadly it can be neglected when a person has a disability. Promoting independence for people with a brain injury can be a huge lifelong job. Too often service providers foster the expectation that a person can be medically stabilised, learn a few compensatory strategies then live happily ever after. This may occur, but it is rarely the case.

A brief history For much of the twentieth century people with disabilities were cared for by institutions.

During the 1970s, many of these institutions were closed down and people were moved from institutional care back to the “community”.

While this was long overdue, it is argued that it was substantially motivated by economics; it was much cheaper to provide very basic community supports than run institutions.

This meant that while many people did now live in the community, it was often with little or no support. While the past few decades have seen a growth in support for community living, it is hoped the National Disability Insurance Scheme (DisabilityCare) will finally provide the kind of support that was needed decades ago.

Encouraging independence Everyone has the right to an autonomous lifestyle (“autonomy” is Greek for self-rule).

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.

Any government department, health service or welfare organisation should provide support in a way that reflects these approaches.

When full independence isn’t possible When a person’s ability to make their own decisions is impaired, 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.

Family and carers 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 opportunities to exercise choice, an enhanced sense of self-esteem, but also an increased likelihood of a person taking risks.

Handle with care The brain is not only very fragile, but the warranty is extremely limited, there is no exchange and very little in the way of after-sales service. With millions of intricate cells and interconnections, the brain is highly vulnerable to injury from strokes, brain tumour, drugs (including alcohol), lack of oxygen, poison or infections such as meningitis. Trauma is also a major cause, with many brain injuries arising from falls, motor vehicle accidents and sports.

How the brain is injured Three separate processes work to injure the brain: bruising (bleeding), tearing and swelling. Trauma propels the soft tissue of the brain against the very hard bone of the skull. When bruised, blood vessels may tear, which releases blood into areas of the brain. The skull cannot expand so the blood begins to press on softer things like brain tissue. Brain tissue is very delicate and will stop working properly or may even die off. examples of brain injury-specific accommodation options

POSITIVE BEHAVIOUR SUPPORT is exactly what it sounds like — a supportive, positive approach.

Some key points of positive behaviour support include: • Don’t try to control other people, but support them in their own behaviour change process • There is a reason behind most challenging behaviour • Everyone should be treated with compassion and respect regardless of their behaviour • Everyone is entitled to quality of life and effective services after acquiring a brain injury • Our growing knowledge about how to provide support for positive behaviour can make a big difference • Positive responses will be more effective than coercion and punishment.

PERSON-CENTRED PLANNING is also self-explanatory – the client is the focal point. While this might

With trauma, the brain is usually thrown forward, then bounced backward. This can result in tearing of brain tissue, which breaks the connections between neurons. This also happens on a microscopic level and may not necessarily show on standard medical tests — in some cases, a mild brain injury may not be diagnosed correctly.

With swelling, the pressure pushes down on the brain and damages structures in the brain. If there is too much pressure, this can stop important structures that control breathing or the heart rate. Sometimes, doctors will install a “relief valve” to let off the excess pressure.

sound obvious, it is quite easy to focus on options that are cheaper, or easier for family members or organisations providing support. A good plan results in ongoing listening, learning and further action.

It should reflect what is important to the person, their capacities and the support they require, while family members and friends are partners in planning. A plan should result in actions that are about life, not just services and reflect what is possible, not just what is available. Every person will be affected differently by a brain injury, and will need individualised support.

LEAST RESTRICTIVE ALTERNATIVE means that support is provided in the least restrictive, or intrusive, way possible. Let’s take the case of a person with frequent aggression due to a frontal lobe injury.

The most restrictive approach would be prison, followed by chemical restraints through enforced medication. The least restrictive alternative would be positive behaviour support that provides anger management strategies and ongoing support.

Framed in a more positive way, the least restrictive alternative means providing support in a way that encourages choice and freedom. Whether it’s a Brain Injury Association or a family writing a positive behaviour support plan, the least restrictive alternative should be kept in mind.

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.

The future Finally, a great deal more work needs to be done to prepare communities to accept individuals with a brain injury. The major area

of concern here has to do with accommodating people who behave in ways that are considered “disruptive”. Great modifications have been made to create a world that accommodates many people with the well known disabilities.

Now we need to continue to extend this possibility for those with the invisible disability — Acquired Brain Injury.

Further injury Once injured, the brain is much more susceptible to further injuries. A brain injury survivor needs to exercise even more caution than most to avoid worsening their condition. As a result, rehabilitation specialists will often recommend that alcohol and other drugs are completely avoided.

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Public housing The Commonwealth, State and Territory Governments provide various types of community funding and public housing for people with a disability. The Commonwealth Government also pays income support supplements when using the private rental market (e.g. rent assistance payments from Centrelink).

Families can also access government funds to contribute to home modifications so that a person with disability can be cared for at home.

Check with the Brain Injury Association in your State about the funding that may be on offer.

Quality of life Quality of life should be the overriding goal when supporting someone who has a brain injury, particularly when accommodation is being considered.

Quality of life refers to all aspects of life, including access to employment, telecommunications, assistive technology, community living, fairness in the legal system, collaborative services, informed decision making and assessment.

Key to this is not looking at things from the service provider’s stand point, but from that of the person with the disability. A question to keep uppermost in our minds is “What mix of goods, services, and support, do you think will provide you with the lifestyle you would like?” and “Is this what the vendor/purveyor has actually provided?” If not, “What changes need to be made to enhance your total experience?”

Risk assessment It is important to perform a health and safety risk assessment to identify any possible hazards to yourself, workers, visitors and other members of your household in your home.

Identify the hazards (e.g. what could cause harm to people), and make sure you have adequate precautions in your home such as fire alarms, fire extinguisher, fire blanket and emergency contacts.

If a risk has been identified, decide who might be harmed and how to then evaluate the risk and decide on precautions. Inform other household members and act on these risks. Record your findings — this is a helpful process for people with memory problems, or who share a household with others.

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Young people in nursing homes There are too many young Australians stuck in nursing homes. This is a serious social issue, which can and must be fixed.

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.

It is a sad fact that 82% 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.

Every year, 70 additional young people enter aged care nursing homes in Victoria alone, where the average age of residents is 83.

Why young people are in nursing homes Due to significant advances in medical technology over the past 20 years, people who would have once died at the scene of a car accident or other trauma, are now surviving.

The health and disability service systems have not done enough preparation or planning to account for this new and increasing population.

From an acute hospital bed, the next step for the vast majority of people who find themselves in this situation, is nursing home care.

The majority of young people living in nursing homes have an acquired brain injury or an early onset neurological disorder – such as Multiple Sclerosis. Almost overnight the social networks, work or study routines, living circumstances and leisure activities of these young people are gone.

Nursing homes are where people go to be cared for at the end stage of their lives, where the average age is 83. They are not set up nor resourced to cater for the needs of young people with disability, who may have 50 or more years to live. Staff in nursing homes have a certain amount of tasks to do in the most timely and efficient manner – they may not have the time to wait for a person with a communication impairment to respond to a question.

Young people may like loud music, they want to go to bed when they want, have a say in what they want to eat, and go out if

they feel like it. Sadly, these sort of everyday choices the rest of us take for granted are severely limited, if available at all, in the nursing home environment.

It is estimated that across Australia there are over 6,000 young people with disability living in nursing homes, with over 600 aged under 50 years. Each year in Australia, 200 people are forced into this type of accommodation because there is simply nowhere else for them.

What is the solution?

The Summer Foundation has conducted numerous research studies and consulted widely with people with disability, their families and carers, to determine that the type of accommodation needed and address issues of choice and control that are often lacking in an institutional environment.

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 Summer Foundation is developing the next generation of solutions and services, a key of which is Integrated Housing.

This integrated housing model is the next generation of accommodation for people with disability. It aims to be the first of its kind in Australia to provide truly integrated housing, where people with disability will live in their own apartments within a larger residential development with other members of the community.

This is an important step towards the social inclusion of people with disability. They will live close to community facilities, shops and public transport, as well as have access to 24 hour

My child has a brain injury Raising kids brings challenges to all parents, and the challenges can be magnified with a brain injury. It can be difficult, for example, to strike a balance between protecting your child from harm yet encouraging selfreliance and independence; or encouraging a child to aim high while not having unrealistic expectations.

It may not be clear, in the early stages, what problems the brain injury has caused, and it can be difficult to predict long-term outcomes. However, most parents will face a very similar range of challenges to other parents, so focus on these similarities rather than the differences – claim your place, and your child’s place, as part of your local community, school, sporting club and the like.

The best outcomes for a child with a brain injury come when parents, families, specialists and the community all work well together – it is a team effort.

sobering statistics about young people living in nursing homes

82% never go out to visit their friends 56% don’t have a say in what time they go to bed 52% won’t be visited by a friend this year 45% don’t go out to the movies, cafés or to sports events 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 homelike 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, 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’.”

on-call support. Residents will be able to choose to live either by themselves, share with another person (who may or may not have a disability) or live with their partner and children.

In countries such as Canada, integrated models of supported housing have been operating for more than 15 years. It is a model that can be easily replicated to provide the scale of housing required to permanently resolve the issue of young people in nursing homes in Australia.

The Summer Foundation is committed to resolving the issue of young people living in nursing homes. The organisation has three key areas of focus: building an evidence base, creating a movement, and developing integrated supported housing. Call 1300 626 560 or visit www.summerfoundation.org.au

Parents talk of the difficulties and the exhaustion – but they also speak of the joys and achievements. At times, the emotional challenges can seem overwhelming.

There can be disappointment and despair when hopes aren’t met and plans must change. Grief, in some shape or form, can always be there. Parents can feel they’ve lost their privacy and sense of control – everyone else has ‘good advice’ and knows best. You may feel isolated and ‘different’ from other families, or that there is no one there to help. But many parents also say that this life-changing event has also helped them realise what’s really important in life.

Many families also discover they’re not alone, and that linking up with others in a similar situation provides great support. Tap into local community support, explore Internet forums and the phone – explore and make your own contacts and networks.

Alongside the difficulties, lots of good things happen, and families need to recognise and celebrate these. By and large, families get on with life very competently.

Parenting any child brings joys and rewards.

Eventually, most parents whose child has a brain injury see ‘light at the end of the tunnel’ – often when they see their child participating in life and having successes. It is good for everyone to focus on the positive things, and to recognise and celebrate your child’s life.

This article is licensed under the GNU Free Documentation Licence and derived from Wikipedia articles

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Rebuilding lives A support worker’s take on how brain injury accommodation services should work When I first started working with Synapse, I had no idea what to expect. I had previously worked in the finance industry, so Disability Services was a whole new kettle of fish for me. I can only imagine that the feelings I experienced might be similar to what someone who is considering a supported accommodation option for their loved one might also be feeling.

It has now been two months since I started working in an accommodation service designed for people with a brain injury. I experienced this caring nature which did not only apply to me, but extended to our clients and their families as well. This stood out to me immediately, and I found it to be extremely warm and inviting.

It is a misconception that working in the disability services is like working as a babysitter. Every day is something different, and we are always learning new things – not only about our clients but ourselves too. It is so rewarding to watch people grow in confidence as they participate in activities and interact with staff and other housemates.

Everything we do is client-centred – we focus on the clients needs and goals and work towards achieving these together. It’s not like the old mental asylums, where you imagine people sitting around doing nothing all day. Our aim is to help clients learn the skills 9 / BRIDGE MAGAZINE

they need to live as independently as possible.

Every client has a daily and weekly planner that encompasses daily tasks such as meals, cleaning tasks, and medication administration.

But they also incorporate fun things that the client likes to do. For example, one client goes to a sports day on Tuesday mornings with options of rock climbing, basketball, soccer, and obstacle course/fitness type activities.

Another client goes ten pin bowling every Monday night. Some clients go to a day service where they can participate in activities such as cooking, learning computer skills or how to budget, as well as fun stuff like going on picnics or to the beach. Other clients like to go to the Men’s Shed to hang out with other men and some enjoy going to church.

Ultimately however, these outings are not just activities to get people out of the house and keep occupied, but they enable our clients to become valued members of society. This happens through the friendships that are formed and the additional life skills that are learned. Most importantly, I think that feeling like a member of a community increases self-confidence and provides a sense of identity. This enables an individual to deal with life’s challenges and work towards living independently. We don’t want our clients to live

under lock and key for the rest of their lives; rather we aim to equip clients with coping skills and life skills to be able to live their life in the way they would like.

For our client’s goals to be obtainable, we need to be organised and ensure that all our houses operate in the same manner and follow the same guidelines. This is being achieved by the introduction of a Periodic Service Review (PSR). The goal of the PSR is to assess the consistency of the support to our clients, and importantly to assess the overall quality of the services provided. The PSR makes sure that we have all relevant documentation for our clients such as individual profile, medical profile, goals, data collection and reporting, managing finances, and managing client’s health. These details are constantly reviewed and updated.

Being a support worker is an ongoing journey.

We hope we can be a part of helping our clients to become valued members of society and to ensure that we are providing them the best service possible.

Kate Nancarrow is a Lifestyle Support Worker at Synapse’s Lawnton facility

A good night’s sleep after brain injury Sleep patterns can change for many reasons

Changes in sleep routines may be due to stress, worry, work, living situation, family illness or injury, or changes in your physical health and wellbeing. Good sleep patterns are important so that you have enough energy for all your daily activities (work, home, driving, having a social life).

Lack of sleep can affect alertness, concentration and mood. Here are some simple strategies that you can use to improve the quality of your sleep: Get into a good sleep routine Go to bed only when you feel sleepy at nighttime. Try to get to sleep at about the same time every day. No matter how poor your sleep at night, get up at the same time every day — use an alarm clock. Don’t oversleep because of a poor night’s sleep.

Sleep only at night time Sleep during the day will affect your sleep at night so try to avoid naps during the day.

Early on after an injury, people may find they need to have day-time rest or sleep to manage fatigue, but try to keep the naps short and don’t nap after mid-afternoon. If you get tired, try to just have a rest on the couch. Don’t rest on your bed.

Wind down before bedtime Don’t watch exciting movies just before bedtime. Do some relaxation exercises, try a relaxation tape, or listen to some relaxing music.

Start preparing for bed at least 30 minutes before bed e.g. lock the house, have a shower, put on pyjamas, brush your teeth, turn down the lights. Try a warm drink such as milk.

Spend time in bed sleeping Don’t do other activities in bed e.g. reading, watching television, or eating. Keep the bed only for sleeping. If you are awake for a long time, get out of bed. Do an activity until you are sleepy (make sure it is something boring).

Go back to bed and repeat the above steps if needed.

Time outside Spend some time in the sunshine during the day, because this may help with your sleep patterns e.g. sit outside with a book or magazine or the newspaper (remember sunscreen and a hat).

Go for a short walk or do an activity outside in the fresh air e.g. gardening, walking the dog.

Caffeine Avoid caffeine after lunch as this may affect your sleep at night-time. Caffeine is in coffee, tea, chocolate or cola drinks so be sure to cut down on all of them. Try decaffeinated tea or coffee as an alternative.

Sleep environment Make your bedroom and bed as comfortable and pleasant as possible. Remove clutter and get rid of any noise or distractions e.g. use ear-plugs to cut down on noise. Use curtains to block out light and noise and dim the lights.

Make sure your pillow and bed are comfortable. Make sure the bedroom is the right temperature for the weather.

Essential oils like lavender also can be relaxing, so a couple of drops in your bath water, or on your pillow may help create a relaxing feeling.

Alcohol, drugs, and medication Avoid drinking alcohol, especially at night time. Alcohol changes the kind of sleep you have, and can make sleep restless.

If you smoke cigarettes, nicotine levels may also affect your sleep so try to cut down.

Some prescription and recreational drugs can change your sleep patterns, so ask for information from your pharmacist or GP. Over-the-counter medications such as pseudoephedrine can also change your sleep patterns, so ask your pharmacist or GP for information about all the medications you are taking.

Exercise Get some gentle, regular exercise because this will help with your sleep. Don’t overdo it if you haven’t been getting exercise for a while. Start slowly. Talk to your doctor or a physiotherapist about the kind of exercise you can do. Avoid exercising at least four hours before bed-time.

Be patient It can take time to re-settle sleep patterns, so don’t expect changes to happen overnight. Keep using the new ideas and you should start to see changes gradually. If you need further advice, talk to your GP or a psychologist.

This article is reprinted with the permission of ABIOS (Acquired Brain Injury Outreach Service), a specialist community-based rehabilitation service assisting people with ABI in Queensland, their families and carers. Visit www.health.qld. gov.au/abios/ for more of their fact sheets.

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Adapting your home Planning and making home alterations can take time so it helps to start as soon as possible

Remember that any significant alterations, such as rails or ramps, need to comply with Australian 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.

Keep the temperature inside the house comfortable for someone who cannot move about.

Arrange the furniture so that it is easy to move about. 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. Some people need a clear passage.

Others may need supports along the way.

Install smoke detectors in all rooms. Roomto-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. You can also 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 long11 / B R I D G E M A G A Z I N E

handled 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. Hand rails may also be needed beside the toilet and shower.

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 the bed with 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 people 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. 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 Consider 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 • 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.

Financial Assistance If a family member is still in hospital or rehabilitation, talk to the occupational therapist or social worker about the range of funding options and free government services available.

Otherwise ring the Brain Injury Association in your State.

This is an excerpt from For Those Who Care: A Practical Guide published by BrainLink Services Ltd and available for free download from their website. Brainlink is a statewide service dedicated to improving the quality of life of people affected by conditions of the brain and providing support to their families. Visit www.brainlink.org.au

How to find housing A simple step-by-step guide to find private rental housing that will suit your budget, needs and preferences This condensed version of a fact sheet from the Acquired Brain Injury Outreach Service is a great start when negotiating the tricky steps to finding a place to rent.

Things to consider before you begin: • Do I have enough money to move?

• How will I move all of my belongings?

• What can I afford?

• Do I have enough money to live on my own or will I need to share?

• Where do I want to live?

• Are shops, work and places to eat close by?

• Are sports and leisure activities close by?

• Do I need to be close to friends and family who can provide support?

• Will I have access to community services that I may need?

• What is local public transport like?

What sort of residence will I need?

• How many bedrooms will I need?

• Will my residence need to be physically accessible for myself or others?

• Does it have stairs?

• Are the doorways wide enough for a wheelchair etc.

• Do I have enough furniture to move into an unfurnished residence?

• Do I need particular floor coverings according to my mobility needs?

What sort of housing am I eligible for?

• Public housing • Community housing • Private rental.

If Government housing is not suitable or available for you, then your next step is to look for housing through private rental. This can be a much more expensive means of accommodation, and you must evaluate your finances to ensure that you are able to afford a rental property.

How to apply for private rental How can you find private rental properties?

You can search for private rental properties by either visiting the real estate offices in your area or by searching on the internet.

Each real estate office will have a list of private rentals in their area – this list is updated as often as every few hours – much more frequently than the internet.

Most private rental listings in Brisbane can be found on the website www.realestate.com.au Finding private rental properties online • Go to the www.realestate.com.au website • Click on the “Rent” tab at the top of the page • Choose your State on the map of Australia • Enter suburb name(s) or select suburbs from the list provided that you are interested in • Select a weekly price range from the list provided, or enter a weekly price range

• Select the number of bedrooms you need to have in your rental property, from the list provided • Select the property type from the list provided (i.e. house, unit etc.) — explanations of the different types of housing are provided by clicking on the link titled “Property Type Definitions” • Click “Start Your Search” to view the results.

How can I view a private rental property There are several ways you can arrange to view a property you are interested in: • You can inspect the property yourself but you’ll often need to provide photo ID and a $50 deposit to get a key from the real estate • The property owner may like to meet you, so they can supervise your inspection • Sometimes the existing tenant may be able to show you through the property • An open house may be arranged if there are multiple people interested in a property.

This is an excerpt from an ABIOS (Acquired Brain Injury Outreach Service) fact sheet. Visit www.health.qld.gov. au/abios/ for the full fact sheet. ABIOS is a specialist community-based rehabilitation service to enhance the service system for people with Acquired Brain Injury (ABI) and their families.

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Ways to reduce stress Care for others by caring for yourself too If you are a support person – since the injury your life has probably revolved around your loved one. Because you care about them, you try to make sure they have everything they need, and that they are happy in spite of their problems. You may also have other people to take care of; maybe small children or elderly family members. You probably find that you spend most of your time working, caring for others, and trying to run the household.

Very little time, if any, is spent caring for your own needs. You may say that you can’t afford to take any time for yourself. We would like to convince you that you can’t afford not to pay attention to your needs. Here is why.

Since the injury, you have likely been under a great deal of stress. A little stress is part of life, but stress that goes on for a long time can have a negative effect on the mind and body. Stress is related to medical problems such as heart disease, cancer and stroke. Stress can make you less effective because it affects your ability to concentrate, to be organised, and to think clearly. Stress also has a negative effect on your relationships with other people because it makes

you irritable, less patient, and more likely to lash out at others. Stress can lead to depression and anxiety.

If you are under constant stress, you are not going to be as helpful to your injured family member or anyone else. If you do not take the time to rest and care for yourself, you will get fewer things done, which will lead to more stress. If you won’t do this for yourself, do it for your injured family member. They will be better off if you are healthy and happy.

Here are some suggestions for ways to reduce stress, stay healthy, and enjoy your life more.

These things have worked for many people, but not all of them may work for you. However, they may help you to think of things that will work. The important thing is that you begin thinking about ways to improve your life.

Learn to relax Taking a few moments to relax can help you be more ready for the things you need to do.

Learning to relax is not easy, especially in your current situation. Even when you finally sit down at the end of a long day, your body and mind are probably not in a relaxed state. You

LEARN WHAT WORKS FOR YOU No matter what was going on in your life before, the injury has caused changes. You are coping with these changes the best way that you know how. The way that you cope with these changes likely depends on how you’ve coped with other difficult situations in your life. You probably tend to use strategies that have worked for you in the past, and this is a good thing to do. However, you may never have experienced anything similar to the injury, and some of your usual coping strategies may not work in your current situation. The best thing that you can do for yourself is to be open to trying new ways of coping. You may have to try several different things before you find the best one. Also remember that different situations call for different strategies.

To help you find the best strategies for different situations, do the following exercise. Make a list of stressful situations that you are facing. Next to each one, list the strategies you’ve used to cope with that situation.

Next, describe what happened when you tried that strategy. If the result was positive, then that strategy is probably a good one for you. If the result was negative, then you know that you should try another strategy. In deciding whether the result of a strategy was positive or negative, you should pay attention to what happened when you used it, and to how you felt when you used it. Did you feel good afterward, or did it lead to more stress for you?

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are probably thinking about what you need to do tomorrow or how to solve a problem. You need to train your body and mind to get into a relaxed state. Here are some techniques that may help. Find the ones that work best for you.

Focussed breathing When you are stressed or upset, your breathing becomes quick and shallow.

You begin taking short breaths from your chest rather than breathing deeply from your diaphragm (the muscle between the chest and abdomen that helps with breathing). Taking full breaths from your diaphragm puts your body in a relaxed state. Try the following exercise (Caudill, 1995): • Lie down on your back in a comfortable place.

• Put your hands just below your belly button.

• Close your eyes and imagine a balloon inside your abdomen.

• Inhale fully (but not too deep), and imagine the balloon filling with air.

• Exhale slowly, and imagine the balloon collapsing (you can also imagine all the stress leaving your body).

Try this exercise several times during the day. Once you get the hang of it, you can do it sitting down or standing up as well as lying down.

Muscle tensing and relaxing The purpose of this exercise is for you to understand the difference between the way your muscles feel when you are tense and the way they feel when you are relaxed (Caudill, 1995).

• Lie down on your back in a comfortable place and close your eyes.

• Curl and tense the toes of one of your feet as you breathe in, then relax them as you breathe out. Notice the difference in tension as you relax. Repeat this with the toes of your other foot.

• Repeat this exercise with other body parts.

Use a focus word or phrase This exercise can help you to clear your mind of negative thoughts and stress. Choose a focus word or phrase. Some people choose a word that has positive meaning for them (e.g. “peace”). Others choose something that’s just easy to remember, like a number (“one”).

Take full deep breaths from your diaphragm. Say the focus word to yourself each time you breathe out.

Visual imagery Lie down in a comfortable, quiet place and imagine yourself in a place where you feel calm and relaxed. It can be a place that you’ve been before, or a place you’ve always imagined would make you feel relaxed.

For example, you can imagine yourself on a beach, lying in the cool sand, feeling the sun on your face, and hearing the water lap against the shore. Try to imagine all that is there — the feel of the sand, the sound of the water, the smells of salt water. If a beach does not seem relaxing to you, pick another place.

In order to train your body and mind to relax, you need to practise often. Don’t give up if it doesn’t work right away. If you keep practising these techniques, you will feel more relaxed in the long run, and you will find that you’re able to function better in all areas of your life.

STRATEGIES FROM OTHERS Researchers have asked family members how they’ve coped with injury (Willer et al., 1991).

While every family member is different, here are some strategies that other family members have found helpful. Some might work for you, and you can add your own to this list: • Take time for yourself • Participate in support groups • Maintain a sense of humor • Be more assertive • Try to see things realistically • Be careful not to blame everything on the injury • Redefine roles and responsibilities.

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.to TIRR Memorial Hermann.

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Improve your problem solving Problem-solving, overcoming negative thinking, and communicating your needs to others Sometimes you may feel overwhelmed by problems. There may be so many problems that you’re not sure which one to tackle first. You can only solve one problem at a time, so pick one. Use the problem-solving steps below to find a good solution. Try to choose a smaller problem to solve first. This will give you practice, and make you more confident of solving bigger problems. If you deal with problems in this way, they may seem easier to handle.

Steps in Problem-solving 1. Identify the problem What is the problem? Define it as clearly and specifically as possible. Remember that you can only solve one problem at a time. In many situations, you will be faced with more than one problem, or with problems that have many different parts.

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Start with one problem. If that problem has many parts, it may be best to break it down into parts. For example, a problem may be that your family member cannot work, so you must find a job. But you are having difficulty getting started because your resume is 10 years old, you have nowhere to leave the children during the day, and your family member has weekly doctor’s appointments. All these things may be preventing you from getting a job, but you can only attack one problem at a time. Pick the one that you think will be easiest to solve. That will give you confidence in yourself and make it easier to go after the tougher problems.

2. Brainstorm solutions What can be done? Think of as many things as you can. Don’t worry about whether they sound silly or realistic. This is the time to think about all possibilities, even the ones that you don’t think will happen. Be creative.

3. Evaluate the alternatives Now you will start thinking about the consequences of the ideas you came up with in step two. For each idea, make a list of positives on one side of the page and a list of negatives on the other side. If you want this to work, be honest about the positives and negatives. It won’t work if you try to fix things so that your favorite solution “wins.”

4. Choose a solution Pick the solution that has the best consequences based on your list of positives and negatives. Keep in mind that more positives than negatives is not always the best rule. Sometimes you will have one negative that outweighs many positives. For example, you may have come up with the idea of taking some courses to increase your job skills in order to solve your problem of needing a job. There may be many positive consequences of taking these courses.

The one negative consequence may be that the courses will cost money and your financial situation is already bad. This negative consequence may carry more weight than all the positive ones.

5. Try the solution out Try out the idea you have chosen. Give it more than one chance to work. If it doesn’t work right away, try to figure out why. Was there some consequence you didn’t think of? Is there another problem in the way that could be easily solved?

6. If it doesn’t work, try another technique Don’t give up. Everything doesn’t always work out the first time. You can learn from your mistakes; they may help you to choose a better solution next time.

HOW TO OVERCOME NEGATIVE THINKING Everyone has negative thoughts now and then. It is normal for you to have negative feelings about the injury and the unexpected changes it has caused in your life. However, negative thoughts can become a problem when they stop you from being able to reach your goals, hurt your relationships with other people, and lead you to feel badly about yourself and your life.

You can overcome negative thinking if you understand the effect that thoughts can have on what you feel and what you do. Take the following example. Your friend says to you, “I know a great hairstylist and I’ll give you the phone number.” How would you feel if you thought that your friend meant that your hair is looking terrible and you need some help? Now think about how you would feel if you thought that your friend was really excited about this great hairstylist and wants to share her with other people she cares about.

In this situation, you would feel differently depending on how you thought about what was said. The way you think can also affect what you do. For example, you may tend to pull away from your friend if you have negative thoughts about what she said.

COMMUNICATING YOUR NEEDS TO OTHERS If you’re like most people, you have a hard time asking others for help. This is because we often think we should be able to do everything on our own. However, the injury was something that you didn’t expect, and it is natural for you to have difficulty handling everything by yourself. Many people might be willing to help, but they may not think to offer help. It is also important for you to let others know when you don’t want advice or help.

Other family members or friends may constantly give you advice that isn’t useful because they don’t understand your situation. Others may even criticise the way you care for your injured family member or yourself. It is important for you to clearly communicate to them that you are doing the best you can, and that things are more stressful for you when others criticise you. When communicating your needs to others, be clear and use words that won’t make them feel blamed. Use sentences that start with “I” rather then “You.” For example, say “I feel badly when you tell me I’m not doing a good job” instead of “You really make me mad when you criticise me.” Also let them know what would help you or make you feel better. For example, you could say, “I’m having trouble doing everything well because I have to do so many things at once. Is there something you’d be willing to help me with?”

The way you think has a lot of power in your life. The good news is that your thoughts are one of the few things you can control. You cannot always control what goes on in your life, but you’re the only one who can control how you think about things. What you say to yourself about things can make a difference.

Here are some common thoughts that can have a negative effect on what you feel and do (Burns, 1989).

All or nothing thinking This is thinking that if things don’t go perfectly, it’s a complete failure e.g. “I missed a day of exercise, so I may as well give up and not exercise at all.”

Overgeneralisation This is seeing a single bad event as meaning that things have always been bad and will always be bad in the future e.g. “My husband’s disability claim was denied the first time we tried. I guess we’ll never be able to get any financial help.”

Ignore the positive, focus on the negative People tend to pick on one negative event to remember, while forgetting all the positive things that have happened. For example, if you received many compliments on your new haircut, you’ll still focus on the one person who said they didn’t like it. Even if most of your friends and family have told you what a great

learn how to reward yourself Everyone needs something to look forward to. You’ll probably say, “I have no time; it’s impossible.” Just remember that you will be more ready to do the things you have to do if you take some time to do some things that you want to do. Even if you have very limited time, you can find some small way to reward yourself. Promise yourself a bubble bath at the end of a long day. Take a walk around the block. Or have a cup of your favorite coffee or hot chocolate.

If your schedule is very hectic, you may need to write this time into it. This will also give you something to look forward to. Don’t be surprised if you feel guilty at first for taking this time. This guilt is the result of negative thinking (“I should always be doing something for my loved one or getting something accomplished.”). Ignore the voice in your head that tells you this. You deserve to have your own time, and you will be a better caregiver if you take it.

job you’ve been doing since the injury, you will likely focus on the one person who reminded you of something you forgot to do.

“Should, have to, and must” statements These are things people say to themselves that are not true or rational. Some examples are: “I should not make mistakes.”; “I have to reach all the goals I set for myself.”; “Everybody must be happy with me at all times.”. Because these statements are not true, you are setting yourself up for failure.

You will eventually make a mistake, events will prevent you from reaching all of your goals, and everyone will not be happy with you at all times. When these things happen, you may think that you are a terrible person, that someone else is a terrible person, or that life is awful. These thoughts will have a negative effect on what you feel and do.

To increase positive thinking, try to recognise when you are having negative and irrational thoughts. Then tell yourself something positive to replace the negative thought. For example, if you catch yourself saying “I should not have forgotten that doctor’s appointment this morning” stop for a moment. Instead, tell yourself “I have remembered all of the other appointments we have had this week. I have many more things to remember than I used to, and I am bound to forget some things at times.

I will do better next time.”

Remember, thinking is very powerful: changing your thoughts will allow you to better control your life. You will still have some negative thoughts, but they will not control your life.

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.to TIRR Memorial Hermann.

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Sex and disability Jason Seneviratne discusses the lack of sex education in the disability sector During my time working in disabilities I have encountered many topics that are rarely spoken about, and it leaves me puzzled as to why. Physical desires and needs desires and needs are essentially the same for everyone, yet our culture dictates that anyone with a disability should not have sexual needs.

A disability can certainly raise complex issues. If a person’s ability to make decisions for themselves is impaired, then anyone in a guardian role will face issues around meeting their sexual needs, inclusive of escorts and sex workers. These difficulties are not an excuse to simply ignore sexual needs, but there may be legal implications in accessing sexual services for someone with a disability.

A case study “I am an incomplete C-2 quadriplegic with full sexual function (which is very rare) and due to the rarity of this I was able to win a landmark court case against my insurer for them to pay for me to regularly see a sex worker when I split up with my then girlfriend. I think it’s good that the court saw the importance of the role that sex plays for disabled people as it is something that my insurance company wouldn’t have paid for

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otherwise. There is a bill being introduced by a Labour member called Kelly Vincent for the South Australian government to fund sex workers to relieve the frustrations of disabled people. I’m not sure whether it passed or not but it is a subject that is getting looked into more of late which I think is very important.”

This excerpt is from a client currently living in supported accommodation. The daily stress he faces to obtain services for his basic needs has been an ongoing battle. This will often be the case when someone has had a normal sex life prior to acquiring a disability such as a brain injury – their post-injury sexuality rarely has any continuity with their past life experiences.

Previously this client’s sex life was purely a private matter only shared with those he was intimate with. Now all decisions regarding his sex life must leap the hurdles of stakeholders and legislation, and his former private matters are now public knowledge in the workplace – admittedly his details are strictly on a needto-know basis but none of us would be entirely happy with our sex life being discussed by a team of support workers, guardians and trustees.

The social isolation faced by many people with a disability is an ongoing matter in

today’s society. People born with a cognitive disability from birth, or acquired at an early age, will often miss out on learning the social cues subconsciously learned by their peers, especially if they are placed in institutions or special schools. These are skills that are crucial to forming sexual relationships in the future.

There is often a lack of sex education for these supported individuals that normally takes place during high school years. There would appear to be a fear of sexually induced behaviour that takes precedence, and it becomes a road lit with uncertainty and caution for anyone with a disability.

Where is the sex education coming from?

So how do people with cognitive or intellectual disabilities learn the appropriate manner for expressing these urges? Are inappropriate sexual behaviours the natural outcome when the only means of self-education has been the media? No parent would want their child’s sex education in the high school system to be derived completely from television. Yet it is increasingly apparent that people living with a disability are relying more on these methods and are frequently unaware that their sexual behaviour is socially inappropriate.

First every brain injury defence?

The arliest record of a successful brain injury defence dates back to 1800. James Hadfield (or Hatfield) attempted to assassinate George III of the United Kingdom, but was acquitted of attempted murder by reason of insanity.

He was severely injured at the Battle of Roubaix in 1794 and was struck eight times on the head with a sabre, the wounds being prominent for the rest of his life. After returning to England, he became involved in a millennialist movement and came to believe that the Second Coming of Jesus Christ would be advanced if he himself were killed by the British government. He resolved to attempt the assassination of the King and bring about his own judicial execution.

For adults who have acquired a brain injury, there may be some informal education on relearning what is and isn’t appropriate touch and personal space from rehab staff, but the social and sexual skills needed for the long term are frequently not addressed following an injury.

Touch & personal space as an example Consider how many people may have physical contact with a person with a disability: physiotherapist, nurse, family doctor, ambulance drivers, care assistants, respite workers, taxi drivers and any number of health professionals.

It would be easy for a person in this position to assume that touching anyone they don’t know is acceptable. This is a potential minefield when mixed with sexual urges and a lack of education on sexual norms in a culturally and legislatively defined society.

A good start Personally I would hope to see services embracing this need for education for supported individuals by developing a plan in consultation with services such as Family Planning Queensland which encourage service providers to be actively involved in sex education.

Relevant topics would include: • Body parts and functions • Public and private behaviour • Rules about touch • Relationships • Puberty • Menstruation • Sexual relationships • Sexually transmitted infctions and safer sex • Pregnancy • Masturbation • Sexual behaviours • Personal safety.

Hopefully developing skills and knowledge in young people living with a disability and supporting them to maintain healthy sexuality and relationships will be more than a promise in the near future.

Sexuality has long been neglected in the disability arena.

Go to www.synapse.org.au to download Volume 2 of Bridge which focused on sexuality and disability. We will be addressing the legal aspects of accessing a sex worker in an upcoming issue.

On the evening of May 15 1800 at the Theatre Royal, Hadfield fired a pistol at the King standing in the royal box during the playing of the national anthem.

Hadfield missed his target, then addressed the King, announcing “God bless your royal Highness; I like you very well; you are a good fellow.”

Hadfield was tried for high treason and pleaded insanity, but the standard of the day for a successful plea was that the defendant must be “lost to all sense … incapable of forming a judgement upon the consequences of the act which he is about to do”. Hadfield’s planning of the shooting appeared to contradict such a claim.

Two surgeons and a physician testified that the delusions were the consequence of his earlier head injuries. The judge halted the trial, declaring that the verdict “was clearly an acquittal” but that “the prisoner, for his own sake, and for the sake of society at large, must not be discharged”.

Up to that time, defendants acquitted by reason of insanity had faced no certain fate and had often been released back to the safe-keeping of their families.

Hadfield’s acquittal caused a public uproar, and parliament speedily passed the Criminal Lunatics Act 1800 to provide for the indefinite detention of insane defendants.

This article is licensed under the GNU Free Documentation Licence and derived from Wikipedia articles

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Latest news Visit the Latest News section of our website at to read full versions of the stories below. Go to synapse.org.au and click on the News link.

STATISTICS ON HOMELESSNESS & BRAIN INJURY Researchers are shocked by new statistics on brain injuries. Men who are heavy drinkers and homeless for long periods of time have 400 times the number of head injuries as the general population, according to a new study by researchers who said they were shocked by their findings. These men have 170 times as many severe head injuries as the general population and 300 times as many injuries that cause bleeding in the brain. The study by Dr. Tomislav Svoboda, a family physician at St. Michael’s Hospital, appears online in the Emergency Medicine Journal.

SUITABLE CARE FOR THE YOUNG Young Australian Jock Watson spent most of his 20s in a nursing home after a car accident left him with an acquired brain injury, meaning he needed constant care. While fellow residents tried to engage the young man in their bingo games and sing-a-longs, it was an isolating experience. Jock recently moved into supported accommodation for the disabled which has been a major improvement. But age-appropriate accommodation is in short supply and more than 7500 young Australians with disabilities live in residential aged care.

ONE PUNCH CAN KILL In a recent game, NSW Origin captain Paul Gallen was lauded by his coach for punching an opponent on the chin. The coach labelled the fight “a great Origin moment” and a crowd of more than 80,000 rose to its feet and voiced approval.

The reality is Gallen’s punches had the potential to inflict brain damage. The quick left-right combination could have floored the Queenslander … permanently.

Positive responses to this type of violence will only perpetuate the myth that people always get up and walk away from potentially lethal punches to the head.

CONCUSSION EFFECTS SIMILAR TO ALZHEIMER’S Recent research indicates that concussions can cause brain abnormalities similar to Alzheimer’s disease.

Despite being the “mildest” form or brain injury, many experience persistent neurological symptoms throughout their lives. White matter damage in the brain is similar to that found in patients with Alzheimer’s disease. These findings suggest that concussions set off a chain of neurological events that can cause long-term damage to the brain.

BRAIN INJURY FROM ‘HEADING’ SOCCER BALLS Research at the Albert Einstein College of Medicine of Yeshiva University shows that soccer players who frequently head soccer balls have brain abnormalities similar to those found in patients with concussion.

On average, soccer players head the ball six to 12 times during games. Scientists are worried that cumulative damage from headings can lead to brain injuries.

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Housing tookit A handy resource for exploring your accommodation and support options

There is a dearth of accessible and affordable housing for people with a disability in Australia. While DisabilityCare will provide funding for the support that people need to live in the community, it will not provide capital for housing. For the past twenty years we have been building variations 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 everyone. People with acquired disabilities such as brain injury or Multiple Sclerosis often have partners and/ or school age children. Their needs are 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.

The disability sector in Australia is about to be transformed. In the current service system, people with disability tend to be at the bottom of the hierarchy. In this welfare model with scarce resources and a shortage of housing, people with disability have limited choice and control over where they live and the services they receive. People with disability are rarely given a real choice – they are usually expected to fit in with the available housing and support model. Summer Foundation research has found that people with disability and their families often take many years to find the information they need to make an informed choice about housing and support.

DisabilityCare Australia aims to turn the current service system on its head. It is developing a market driven system where people with disability will get to choose who, what and how they receive the support they need. For this system to work effectively, people

with disability will need to make the transition from passive recipients of welfare to empowered and informed consumers.

The Summer Foundation recently released the Housing Toolkit – a resource developed to build the capacity of people with disability to make an informed choice about housing and support. Some people with disability already have a clear idea of where they want to live and how they want to be supported. Others would like to explore options but will find it hard to imagine living anywhere else. The Housing Toolkit includes a video with real life examples of housing and support options to help people think about what will work for them. Nine people with disability and their families describe where they live and the support they receive to live the life they want.

This comprehensive planning tool provides step by step information, questionnaires and checklists. Consistent with the principles of DisabilityCare, the toolkit provides the structure to tailor support services so that they wrap around the specific needs, preferences and lifestyle of the person with a disability rather than slotting people into a model of support.

Hard copies of the toolkit are available free to people with disabilities and families by emailing the Summer Foundation at info@ summerfoundation.org.au or ringing 1300 626 560. Visit www.summerfoundation.org.au for a free online copy.

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. The Foundation collaborates with other nonprofits organisations to increase funding for the disability sector rather than compete for scarce resources. Visit their website at www.summerfoundation.org.au

Hormonal imbalances after brain injury A brain injury may cause damage to the hypothalamus and/or pituitary gland, which are small structures at the base of the brain responsible for regulating the body’s hormones. Damage to these areas can lead to insufficient or increased release of one or more hormones, which causes disruption of the body’s ability to maintain a stable internal environment (homeostasis). If damage to the pituitary gland leads to a reduction in hormone production the resulting condition is known as hypopituitarism.

Symptoms & assessment In the early stages after brain injury most people’s hormone levels are severely affected, making diagnosis of hypopituitarism difficult.

Later in the recovery process, it may become clear that some symptoms are caused by hormonal changes. Some rehabilitation units test for this on assessment, however, there are currently no clear guidelines in place for the assessment and treatment of pituitary function after brain injury, and more research is needed to determine the scale of the problem.

The effects of pituitary and hypothalamus injury are many and varied because of the huge amount of hormones which can be affected. Some symptoms are similar to the more common effects of brain injury and that is another reason why the problem may be under-diagnosed.

Examples of overlapping symptoms are: • Depression • Sexual difficulties, such as impotence and altered sex drive • Mood swings • Fatigue • Headaches • Vision disturbance Other symptoms include: • Muscle weakness • Reduced body hair

• Irregular periods / loss of normal menstrual function • Reduced fertility • Weight gain • Increased sensitivity to cold • Constipation • Dry skin • Pale appearance • Low blood pressure / dizziness • Diabetes insipidus.

Each symptom is caused by a change in the level of a particular hormone that is produced by the pituitary gland. There are many possible causes of the above symptoms, particularly after brain injury, so a thorough assessment is required before any diagnosis can be made.

If you suspect you or a relative may be experiencing the symptoms of hypopituitarism, or any other hormonal condition, you should speak to your doctor. If they feel it is appropriate, they will be able to refer you for further assessment with a specialist in the field, such as an endocrinologist. They will be able to run a variety of hormone level tests and may refer you for a scan to look for signs of damage to the hypothalamus or pituitary gland.

It is important to remember that symptoms may not become apparent immediately. In some cases, the problems don’t manifest themselves until weeks, months or even years after an injury. Don’t dismiss the possibility that the problems are a result of the head injury just because it happened a long time ago.

Treatment In the early stages, hormonal problems can cause a condition called neurogenic diabetes insipidus, which is characterised by increased thirst and excessive production of dilute urine.

This is due to a reduction in secretion of a hormone called vasopressin (anti-diuretic hormone) and can be treated by administering desmopressin (manufactured anti-diuretic

hormone) and replacing lost fluids. In most cases, diabetes insipidus disappears fairly quickly, but in some rare instances can persist, sometimes permanently, requiring lifelong hormone replacement therapy.

In the later stages, where hypopituitarism is confirmed, treatment may be given. Hormone replacement therapy may be used to restore hormones to normal levels, which should help to manage the symptoms. There are different treatments available, depending on the particular hormones involved and the nature and extent of the symptoms.

The assessment and treatment of hypopituitarism after brain injury is a complex process and more research is needed into the potential long-term benefits of hormone replacement therapy. As with any treatment, you should discuss the pros and cons with your doctor before making any decisions.

Further information There are a number of studies into hypopituitarism after brain injury, but as yet the full extent of the problem is unknown.

It seems to occur mainly after severe brain injury, however some studies have shown that the pituitary gland may also be vulnerable to seemingly minor head injuries.

You should be particularly aware that many of the symptoms can be caused by damage elsewhere in the brain, and if this is the case treatment for pituitary dysfunction will not be effective.

This article is reproduced from www.headway.org.uk with the permission of Headway – the brain injury association.

You can send an email to helpline@headway.org.uk to discuss any issues raised. Visit the website for great resources available for free download.

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Life after death

Is there life after a brain injury, and how do we find it again?

I donned a wet suit to head off surfing on a chilly July morning. I remember little else but was told a series of huge waves held me under, and it was several minutes before a fellow surfer got me to the shore where an off duty nurse brought me back to life.

If you know about after-death experiences, then no: I did not see a white light. I didn’t see loved ones egging me on to the heavenly gates.

I don’t remember anything, but apparently that is quite normal after a brain injury.

At hospital, they did the usual tests and proclaimed me to be a Lucky Young Man, but this being many years ago, they weren’t worried about brain injury, as I hadn’t been in a coma and there were no pieces of my surf board actually stuck in my head.

What is the afterlife like?

So what is life after death like? In the following months, I noticed I did not feel like “me” anymore. Years later, I realise now I had become a self-centred, easily angered, disorganised young man. I lost much of my ability to relate to others, remember things and hold a reasonable conversation — let alone friendships — together.

I was not aware of this for a long time. My ability to analyse myself, let alone other people’s reactions to me, was gone. All I had was this 21 / B R I D G E M A G A Z I N E

distinct feeling that I was not myself, almost as though someone similar to me had taken up residence, an imperfect clone at the controls.

Fun for all the family I used to be a pretty chilled kind of guy, but now I was hypersensitive to things anyone said.

Friends began to keep their distance when I would explode over a friendly ribbing from them. Yet perversely, I seemed to now be critical and insensitive to others. I was not conscious of this at the time, it is only now I look back and realise what a hypocrite I must have seemed. I became something of an Angry Young Man as people abandoned me, and felt persecuted by my family which had become very critical of me for what looked like no reason.

I now know my family were incredibly supportive and copped heaps of crap from

me. They were just reacting normally to my abnormal behaviour, when I would borrow their car without asking or turn off the television as they watched it because the noise bugged me.

Then there were my torrents of abuse when they were upset about things like this. Fun for all the family.

The employment merry-go-round But back to the early days. Unemployment was not far off. My laid-back nature had been an asset at work, but now I was alienating co-workers and getting called into the office for what seemed to be silly reasons. Why did you miss that meeting again? You can’t tell clients with a complaint to piss off. Stop flirting with the new secretary, she’s uncomfortable with it.

They had me out of there the moment they satisfied the three disciplinary interviews

MESSAGE FOR FAMILY MEMBERS What can I say to husbands, wives, siblings, children, parents, employers or friends of someone with a brain injury? If you’ve been putting up with some of the things I’ve mentioned, good on you. I’m getting a picture of the patience, selflessness and love required to handle the behaviour, words and attitudes that can emerge after a brain injury. Perhaps my story gives some insight to why you may not be thanked for your efforts – indeed, you may just be criticised or abused when you are doing the best you absolutely can. I hope the person you know can gain the self-awareness to eventually appreciate all you have done for them, and begin the difficult task of reciprocating a little.

required by company policy, and I can’t blame them. At the time, I thought they were picking on me for some unknown reason (add mild paranoia to the list).

Over the years, I constantly got similar jobs as I could maintain the polished exterior, but lost them rapidly when the post-injury me emerged.

Now I work part-time as a security guard. My university studies don’t get used much in this line of work, but I can cope with the duties and not rub people up the wrong way. It’s hard to describe the anguish in this move, from professional high flyer to average Joe. For most of us, what we do for a crust is a substantial part of who we are, and this job shows how far I have fallen. Yet I know I am one of the very lucky ones who can actually still work.

Relational disasters Relationships were a disaster. Most women sensibly ran the other way at my clumsy attempts to bed them as soon as possible. I had lost much of my ability to see the world through someone else’s eyes. Girlfriends were mainly there to meet my needs, although I genuinely thought I was still a caring kind of bloke, at least ex-girlfriends said so from the pre-injury days. The only woman who hung around pretty much took whatever crap I threw her way as her own personal demons led her to be a kind of emotional punching bag. I simply lost respect for her when she meekly took my constant demands, insensitivity, criticisms and emotional distance without a murmur, and I broke it off with brief text message by mobile phone.

I’ve resigned myself to being single, at least for the time being. I have enough self-awareness now to know how much I can hurt someone, and I know I need to work on my relationship abilities a lot more before inflicting myself on someone else.

The self-esteem conundrum Self-esteem suffers inversely proportionally to self-awareness. The more I become aware, the worse I feel about myself. But it is hard to work on becoming a better person when you feel like crap. I figure this spiral of depression must be the same for many of us after a brain injury. Ignorance is bliss, yet the key to better relationships with families, co-workers and friends is realising what an unpleasant person you have become. Go figure.

So this is a “mild” brain injury according to my doctor. What a misnomer. A mild case of ripping your life apart, then letting you painfully put it back together to regain a mere shadow of your former self. Throw in regular shocking migraines, mental fatigue, insomnia and a smorgasbord of other ‘mild’ problems.

Actually, my doctor has been a top bloke.

For a neighbourhood GP, he’s always had a thing for neuroscience, and he prompted me

to get on track to a diagnosis of Acquired Brain Injury (and licked this story into shape).

There is bugger-all support for people like me, so we regularly have a bulk-billed session where he helps out with strategies for all sorts of things. At the moment, he is trying to get me to converse politely and read non-verbal language (Last week, me at a party: You’d have to be a dickhead to vote for the Liberals. Polite shuffling of feet, lack of eye contact, moving away, so I follow them and continue my harangue – spot the problem!)

Message to those banged up And what can I say to my fellow damaged ones? We all vary in our levels of self-awareness.

If you find you’ve lost friends, alienated family, pissed off your neighbours yet believe they are all at fault, take a gentle but long look at yourself. This is incredibly common after an injury, and the first challenge is to realise all these people have not changed – they are only reacting to the changes in you.

The next challenge is crawl out of the pit of despair (friendly tip – alcohol or dope just make the hole deeper) and begin assembling a new life for yourself. Learn how to see the world through other people’s eyes again. Relearn how to listen and stop boring others by talking about yourself non-stop. Relearn how to express yourself diplomatically, and treat others with the same sensitivity you expect for yourself.

Find someone who really knows their brain injury stuff and work with them over time to relearn some of the living skills you have lost.

Finally, if you are a surfer, get one of those surfing helmets. Sure, you will look like a dickhead, but you won’t have to go through the crap I have if your surfboard clocks you one.

Be gentle on yourself Perhaps the final and greatest challenge is readjusting your expectations of yourself, and learning to like the new life you’re creating. Be gentle with yourself, and appreciate the effort you are making, even when others can’t see it.

It’s worst for me at family get-togethers.

My two brothers are there with perfect wives, jobs and children, with mum and dad doting on them all. Then there is the sad but loving look reserved for me, the part-time security guard, living alone, struggling to fit in the conversation, looking awkward, trying to read non-verbal cues while the gift of effortlessly fitting in with others eludes my clumsy grasp to date.

Oh well. These challenges are the hardest things I’ve ever done in life, but frankly, what’s the alternative? As they say, “It’s better to die on your feet than live on your knees”.

Tell or not to tell

People who have acquired a brain injury often need to decide when or whether to tell other people about their injury.

There can be definite advantages. If you have slurred speech or need time to respond in conversations, you can explain that your intelligence is not affected, as you do not have an intellectual disability.

If you do not have obvious signs of having an injury, an explanation can help people to understand less obvious signs such as running late, memory problems, poor social skills, fatigue or why you are not employed.

Reasons to be careful There are many misconceptions about brain injury in the community. Some may falsely believe a brain injury is a type of intellectual disability or linked with mental illness, disabilities that many people also have misconceptions about.

Many survivors have found people who have reacted negatively, avoided them, or been sympathetic rather than understanding. If you tend to be impulsive, try to be cautious and don’t rush in to tell others about your injury. It can pay to talk with a trusted friend or family member about the right time to reveal things. Social skills can be a minefield until you relearn the nuances of friendships again.

Coping with rejection Unfortunately, it is common for old friends to drift away after your injury, and to have trouble making new ones. Feeling rejected is very normal, but how you respond to this is important.

Where possible, don’t be bitter about other people’s fear, misconceptions and lack of understanding.

Continue to focus on the things you like about yourself.

Don’t allow your self-esteem to be based purely on the reactions of those around you.

Learn from unpleasant experiences with others. Is this an opportunity to learn new social skills? For example, possibly you did not listen enough, or may have been too direct with your comments. Again, talk the situation over with someone you trust to see what you can gain from the experience. Dwelling on rejection, anger and sadness for too long will only drag you down and make life more difficult. How you choose to respond will have a huge impact on how you feel in the long run!

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A space of my own There is hope on the horizon for disability housing in Tasmania

Some years after our then 22 year old daughter received a severe brain injury, our thoughts turned to future accommodation options for her, leading me down a long path of discovery and challenges.

First we needed to find out what people living with a brain injury (and their families) really wanted, and what was currently available.

If you weren’t able to live in the family home, the only choices were group homes (usually four to six people with intellectual disabilities) or aged care nursing homes. And even those people who were able to live on their own complained about their isolation.

Assessing accommodation needs A small working party formed in the early 1990s to investigate accommodation options for people living with acquired disabilities (particularly Acquired Brain Injury) and neurological conditions. Why? Independent living options are particularly difficult due to cognitive and communication issues that are often hidden or misunderstood, as well as an underlying intellect and memory of an independent lifestyle.

A series of forums and focus groups determined the basis for a fulfilling and sustainable accommodation option. The responses resulted in this wish list: • My own space – where I am in control • Support close by when I need it (also affording a feeling of safety for family members) • Social interaction (when wanted) with peer group and the wider community • Easy access to services and the wider community to avoid costly transport • Control over my life – ability to have ‘carers’ of my choice, and to live my preferred lifestyle (without interfering with others).

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So we set up an organisation – HOPES (Housing Options Providing Extra Support) Inc. and worked on developing a Co-operative Living Community model.

HOPES co-operative living community The building consists of a small cluster of independent units surrounding a multi-purpose house. This encourages residents to interact and support each other, while retaining their personal space. The common house is (ideally) linked to a respite/transitional unit, offering on site coordination and support, plus a source of income.

Unit ownership may vary from private individual ownership, to lease from units owned by HOPES, or public housing. Our concept differs from most cluster housing in that it is managed on a day-to-day basis by a co-operative body, whose members consist of the residents, each supported by an advocate of their choice.

Living arrangements in each unit can be flexible, with some double units enabling family members (e.g. supporting parents, sibling or partner) to live on site for short or long periods.

This may constitute a transitional situation, enabling the supporter(s) to move out when they are comfortable with the level of external support, or are no longer able to offer physical support themselves.

The ability to support residents with higher support needs depends on the amount of personal care support already available to the incoming resident, in conjunction with existing on-site support hours. Residents with varying levels of support needs continue to access their preferred personal care support, but can be assisted to share support dollars/hours with other residents, supplemented with rostered volunteer and peer group support.

Joining the community Potential residents submit expressions of interest. Following an initial interview by a HOPES sub-committee, potential applicants meet informally with existing residents to determine general compatibility. Residents have the final say in who their neighbours should be. If existing residents all give the ‘thumbs up,’ the applicant is invited to visit for a closer inspection of the units and to nominate their preferred unit from those still vacant.

Laetare Court Co-operative Community Construction of our first community was completed in May 2010 and we had residents for all but one of the 12 residential units. Three years later, residents have been encouraged and supported by the coordinator to take on a range of responsibilities, with a view to ultimately taking over management. They now chair (and prepare) regular resident meetings and organise gardening, rubbish disposal, shared meals, and other group activities. Residents also support each other with minor issues such as mail collection and shopping. Some residents had previously experienced social isolation, lacked confidence, and/or were extremely reluctant to express themselves, so these are very positive achievements. Our co-ordinator has assisted with resolving problems when required, and has enabled residents to become involved in activities in the wider community.

There are ongoing challenges for future developments but this model definitely provides hope for a better future when it comes to accommodation options in Tasmania.

Sue Hodgdon is president of Hopes Inc. Their mission is to support adults in Tasmania living with acquired and/or neurological disabilities to achieve independence by living in a co-operative environment. Visit www.hopes.org.au

Best practice The Synapse Research & Development Unit is a key to better services in the future The Convention of the Rights of Persons with Disabilities (United Nations, 2006) recognizes the rights of people who have disabilities to enjoy human rights on an equal basis with others. These rights apply to: • work and employment • being physically well • participating in the community • having an adequate standard of living • making decisions and living independently • pursuing personal development • rehabilitation.

Are our services really providing service?

To enjoy these rights and to achieve their personal goals, people who have acquired a brain injury need effective services. Services have not always supported the rights of people with complex disabilities, and individuals and families have been unable to live meaningful lives in the community. This is particularly the case for Aboriginal and Torres Strait Islander Australians who are twice as likely to have a disability than non-Indigenous Australians.

Data is scarce, but Indigenous peoples are also thought to experience Acquired Brain Injury (ABI) more often than non-Indigenous people.

Historically, services for people with complex needs have not based on solid evidence – quality of services has often been measured by simply counting how many people have received services and the number of services delivered, instead of whether individual goals are reached and whether people are enjoying a ‘good’ life. Sometimes restrictive practices have been applied resulting in negative physical and psychological effects.

The need for best practice All Australians with ABI and other complex disabilities need accessible, effective, high quality services. Synapse is committed to providing ‘best practice’ services to clients and

what is best practice?

Best practice is ensuring an organisation uses methods and strategies that consistently achieve positive results, and can be used as benchmark. Best practice assumes there will be an ongoing search for improvements, and that an evidence-based approach will assess both current and future methods.

An evidence-based approach insists that methods are based on research studies. Preference is given to quantitative studies over qualitative and theoretical studies – this means that findings are based on reliable observation, experiment and data collection as much as possible.

their families so that they can achieve their personal aims and goals. Best-practice means routinely assessing client progress, monitoring the effectiveness of services, using this evidence to make decisions, and reporting regularly to clients, families, carers and others about the outcomes achieved.

Making sure we get it right Synapse has established a Research and Development Unit to support our ongoing commitment to best practice through the delivery of evidence-based services for clients with ABI and complex behaviours. The Unit will work as part of the Synapse team, and support Synapse to contribute to national and state government initiatives including: • the roll-out of DisabiltyCare • supporting the delivery of services that result in positive outcomes for clients • increasing our understanding and effective response to the needs of Indigenous Australians with ABI and their families.

The Unit will work with people who have an ABI and complex disability, families, communities, service providers

and researchers. Our first focus is to develop ways to measure whether clients are achieving quality of life goals. We will also create strong links with people undertaking research with Indigenous Australians. Our research will also identify the prevalence of ABI in Indigenous populations as well as contribute to the development of an indigenous assessment tool which will be developed for use under DisabilityCare, Australia’s National Disability Insurance Scheme.

A more visible invisible disability The Research and Development Unit will regularly contribute to Bridge, keeping readers updated on the activities of the Unit and current research in the field of ABI. – Clare Townsend PhD Clare Townsend previously worked for The Centre of Excellence for Behaviour Support as Director of Systems Research and Principal Mental Health Policy Analyst and Acting Research Manager for the Queensland Centre for Mental Health Research, The Park Centre.

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“LINC is an innovative supported living model set in a city environment. It offers people with a disability, individualised accommodation with access to our 24 hour on-site support facility called ‘The Hub’.

This hub is located on the same floor as resident apartments and is where support functions are managed and coordinated by our highly trained, professional staff” Annette says.

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FSG Australia’s LINC model features the following opportunities for residents: • Personal care • Support & coordination services • Independent living with peace of mind that support closely available.

• Options for family and friends to visit & stay if desired • 24 hour emergency support • Lifestyle planning services • Individualised therapies • Community connectivity • Social opportunities • Transportation • Access to FSGA’s extensive networks Perry Cross, a strong advocate for people with disabilities and also a C2 quadriplegic, said “I have been working closely with FSG Australia for the past couple of years and more recently within their Accessibility Audit Program and their LINC model is a welcome addition to current disability accommodation out there. I have visited the launch site in Southport and the units are modern and spacious as well as being fully accessible”.

“Living so close to everything is a luxury many people with disabilities are not afforded. It will make such a difference to people’s lives” he said.

Each apartment in LINC will be equipped with the latest technology in remote monitoring and communication to ensure that residents can access ‘The Hub’ for support 24 hours a day, 7 days a week. The model also allows for family and friends of residents to stay overnight and they can also choose to buy or rent a unit in the same complex to be nearer to their loved ones.

“This model is the culmination of FSG Australia’s extensive research and development of a modern DisabilityCare Australia support structure that balances all aspects of life for the people we walk alongside. The result is high quality, flexible support with the choice of an urban networked lifestyle. As the Dalai Lama says ‘The home is where you feel at home and are treated well’. FSG Australia strives to ensure this basic right can be experienced by everyone in our community” Annette said.

FSG Australia’s first LINC Accommodation model is set to be located in Southport Central Apartments on the Gold Coast.

Living In Natural Communities

For more information on FSG Australia and the LINC Program: Phone (07) 5564 0655 Email info@fsg.org.au Visit fsg.org.au

50 lives 50 homes A disturbing insight into homelessness in Australia

50 Lives 50 Homes was a campaign started in 2010 to house and support Brisbane’s 50 most vulnerable homeless people. Their vulnerability was determined by a number of factors including the length of time that they have been homeless and their healthcare and social support needs. The campaign was initiated by Micah Projects and other non-profit organisations in partnership with Rosanne Haggerty, Community Solutions, USA. Over one week in June 2010, 12 teams made up of over 70 community volunteers canvassed the streets of Brisbane metropolitan areas. Specialised teams also targeted food vans, emergency accommodation, youth services and squats. Locations were based on current knowledge of hot spot areas. 249 individuals were interviewed.

The volunteer teams used Community Solutions’ Vulnerability Index to survey and create a by-name registry of individuals experiencing chronic homelessness and rough sleeping who are most at risk of premature death. The teams also captured data on their health status, institutional history (jail, prison, hospital, and military), length of homelessness, patterns of crisis accommodation use, and previous housing situation. 231 of the individuals interviewed were surveyed using the Vulnerability Index.

This data was collected by use of a 38 item questionnaire. The Vulnerability Index was used to identify those who have been homeless the longest and are the most vulnerable.

This registry will be used to target new and available housing and service resources to the most vulnerable in an effort to reduce chronic homelessness within Brisbane.

The Vulnerability Index is based on research by Dr. Jim O’Connell, of Boston’s Healthcare for the Homeless Program. His research shows certain medical conditions place a homeless individual at a higher risk than others for dying if they remain on the streets.

Visit the website of Micah Projects at www.micahprojects.org.au to read more about this project.

50 Lives 50 Homes was initiated by Micah Projects, a Brisbane community organisation aiming to create justice and respond to injustice at the personal and structural levels of society. Direct support is provided to individuals and families who are homeless or at risk of homelessness.

The mission of Community Solutions in the USA is to end homelessness by transforming people, buildings, and communities. Their new approach to outreach called Street to Home is being replicated in cities across the country.

the statistics 27% report suffering from a brain injury 87% of respondents report at least one behavioural health issue 45% reported having been to prison 20% identified as Aboriginal 51% were found to have health conditions associated with a high mortality risk 68% identified as rough sleepers, of whom half had high mortality risk health conditions 34% experienced tri-morbidity of co-occurring psychiatric, medical, and substance abuse problems 18% had cirrhosis/liver disease 7% were over 55 years old, 13% were under 25 years old The longest reported length of homelessness was 40 years The average years homeless for the vulnerable population was 7.7 years 44% reported IV drug use 49% report being a victim of a violent attack since becoming homeless.

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What’s wrong with this picture?

A brain injury can affect relationships in many ways

Partners can be the unseen victims as they struggle to cope with the effects of their loved one’s brain injury — struggling with anger, dependency, grief, overly direct communication, egocentricity, or simply the stress of looking after the kids and their partner as well.

So often, underlying these issues lurks the question of whether they should stay or go.

As with so many areas brought about by brain injury, there are no easy answers. Some problems may decrease as the brain heals, but there are often lifelong impacts from a brain injury that can affect relationships dramatically.

Counselling Never underestimate the impact of relationship counselling, especially when both 27 / B R I D G E M A G A Z I N E

people acknowledge there is a problem and want to do something about it. Ideally you will need a counsellor familiar with brain injury — check with your Brain Injury Association.

Unfortunately, self-awareness is often a casualty following an injury. If your partner does not acknowledge the cognitive effects of the brain injury, counselling will probably only help you to learn adaptive strategies. However, where there is still some self-awareness remaining, counselling can help a survivor to gradually become aware of these issues, then do something about them. If a neuropsychological report was done, this may give some idea of whether this is possible.

Own up to your problems Remember it takes two to tango! Even

though you may be doing it tough, some of your reactions could be contributing to the problems. Relational issues usually trigger our own insecurities and you may need to look within yourself at how you need to change too.

Get educated Read as much as possible about the effects of brain injury. Remember it is a very real disability, and your partner is not choosing to make life difficult for you. You must adjust your expectations of your partner for this neurological disability, as you would for a physical disability such as cerebral palsy or blindness. Work with your partner on the compensatory strategies — techniques that will compensate for lost skills such as communication, parenting, anger management and organisation.

THE PERSONAL ANGLE on relationship problems “I’ve been seeing this guy for a few weeks now and he’s just told me he has a brain injury. He seems normal to me... actually he’s a really nice guy. But he says he gets stressed really easily, and can lose his temper in a big way. What am I getting myself into here? I need to know if this is something I should get out of now while it’s easy. Is there a cure for brain injury? Can these things get worse? How much danger could I be in?”

“Adrian got his head injury five years ago. The doctors said he made an incredible recovery but I’m at my wits end. He can’t work any more so I have to work full-time, look after the kids, and in a sense look after him. He blows up at the kids and me for no reason. He can’t see past his own nose half the time... I know this self-centredness and dependency comes with the injury but it isn’t any easier to accept. I can’t have sex with him any more, because he’s like a teenager again. I want to leave but what about the kids? And I took my marriage vows seriously. Also he regularly cries and apologises for not being a husband any more, begging me not to leave. He may kill himself if I leave... I might kill myself if I don’t”.

“I thought women were the great communicators, but Cheryl just clams up whenever there is a problem.

Since the car accident, she comes across as cold, extremely independent and often pushes me away when things get intimate. I’m pretty thick-skinned, but she can be so blunt! Things are usually okay for around a week, then the tension slowly builds until she shuts me out for two days. Then she’s okay again for another week. Can she learn to communicate again? Or are we locked into this emotional merry-goround? I seriously don’t know if I could cope with this for too much longer. She’s not the warm, loving person I married”.

circumstances — you may need to obtain a restraining order. In some cases, there may be threats of suicide. In these cases, talking with a counsellor should have prepared contingency plans and appropriate reactions for any of these outcomes.

A point to remember is that there are always options available. For some, they may continue to live with their partners to provide support, but may it clear that the sexual/romantic relationship is finished.

Others have decided to have their ex-partner live nearby and drop in regularly. This often works well when children are involved, as frustration and anger are less likely to flare when the children are only visiting.

When a complete break is being made, talk with your Brain Injury Association about finding supports for your ex-partner. This can be tricky in remote areas, but at the very least most Brain Injury Associations have a free-call number which can be used.

Get supported Use respite services. Get into a support group and talk to others. Call your local Brain Injury Association and get it off your chest.

When the pressure, despair and frustration are overwhelming, sometimes a break and chewing someone’s ear off can make a huge difference.

It’s still no good!

Despite what is said about our ‘easy divorce’ society, people rarely make the decision to end a relationship flippantly. It usually only comes after working through guilt, depression, frustration and trying every option to make things work.

When confronted by constant aggression, the decision may be relatively easy. But often,

the brain-injured person is apologetic, trying the best they can to improve the situation but the relationship will simply not work any more. Talking all of this through with a skilled counsellor will help you make the best decision in your circumstances.

But what about my partner?

When a partner leaves, the person with the brain injury may react in a number of ways.

If their self-awareness is impaired, they will honestly believe they have been deserted for no reason, and there may be years of antagonism, bitterness or pleading for a return to the way things were.

In some cases, there may be threats or actual violence which cannot be tolerated in any

Coming to terms with it all Leaving a spouse can be very difficult, especially for those who vowed to be with them in sickness or health, for better or worse. For many, they gradually overcame their guilt by realising the person they had married no longer existed, and had been replaced by the postinjury personality.

Remember though, that many relationships cope with traumas equal to that of a brain injury, and eventually emerge the stronger for it. That is why any decision to leave should be first discussed with others who have been there, an experienced counsellor, and after all possible options have been tried.

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To learn or not relearn social skills These issues often arise as neurological damage to the brain impacts on emotional control, self awareness and social skills.

Everyone is familiar with children crying or screaming easily, not being able to see others’ points of view and getting into ongoing debates or fights frequently. As our brain matures, we gradually learn the important and often difficult task of how to control our emotions or impulses, see the world through other people’s eyes, tolerate radically different views to our own, and how to avoid or deal appropriately with conflict.

Why does it happen?

By the time we are adults we usually take these skills for granted, but our frontal lobes have often taken 25 years to mature to this level. We must also learn from life experiences to develop these skills. We take for granted the ability to live peacefully in a world full of people, ideas, religions, political parties, customs, rules and laws that we often dislike or may even hate. Our tolerance, understanding and ability to ignore or resolve conflict peacefully are highly developed cognitive abilities that are only reached (if ever!) in our adult years.

A brain injury can often entail damage to the frontal lobes meaning that many of these skills may need to be relearned. In some cases the person’s self-awareness may be lost in which case the person may never regain these hard-won abilities. Let’s look at a typical example of how a brain injury can affect a relationship where self-awareness is also a problem.

Brian’s story: I find so many things annoy me.

She says ignore them but I can’t, I have to speak out. People saying the dumbest things. Ridiculous laws or regulations. Teenagers acting stupidly. My partner’s attitude to so much of life. When I tell people what I think they almost always react badly.

All I’m doing is telling them the truth! But they 29 / B R I D G E M A G A Z I N E

get their backs up and ignore me, or we wind up yelling, or in public I end up being intimidated by police officers or security guards. People just can’t handle the truth and it really annoys me.

Jo’s story: He’s changed so much since the head injury. He used to be easy going and got along with everyone. Now he is very opinionated and obsessed with little issues. He lost all his friends and continually loses jobs due to arguments. He complains of other people’s intolerance but it is his intolerance that gets him into arguments in the first place! He expects me to support him when I don’t agree with him, then loses his temper when I gently try to show him the other person’s side of the story.

Compromise or be true to myself?

People with a mild brain injury often have retained their self-awareness. They know how they used to be before the accident and how they have changed.

Edith’s story: Since my brain tumour my husband has found me hard to handle. I speak my mind now and tell it like it is. I know I used to be able to ‘sugar coat’ things and sound polite but the new me can’t handle that. I’m not being true to myself when I try to say it nicely. I’ve lost friends over this and things aren’t going well with my family. My husband says we may separate because he reckons I am too abrasive, critical and abrupt now. We get into arguments because I tell him he is being too sensitive.

This is a very common issue faced by brain injury survivors. They may come to terms with their new identity — they accept that they now speak their minds readily and simply get frustrated with the complex rules of polite

conversation. But the consequences may be lost friendships, alienating their families and trouble making new friendships.

At some point a decision must be made. Does the survivor be true to the new self? In that case they must accept the potential consequences of losing relationships and troubles in making new ones. Or does the survivor choose the difficult path of relearning social skills, tolerance and accepting others’ views in order to retain their old friends, partners and family? This can be especially difficult when after a brain injury these abilities seem to appear useless or ridiculous.

The difficult path If a brain injury survivor chooses to relearn these skills, it is a challenging process and the brain injury means they may never get fully back to where they used to be. But the potential payoffs in terms of retaining the support and joy of friendships, relationships, family and even employment can be rewarding.

An understanding and objective partner and family can go a long way to helping as they realise the brain injury has caused the problems and their loved one is not intentionally hurting them. They can also assist with feedback.

The brain injury survivor will need accurate feedback at times to know when they are being intolerant, obsessive, inflexible or unreasonable in a given situation by normal social standards.

The person will also need strategies for avoiding or dealing with stress, anger and depression. And finally your local Brain Injury Association should be able to provide resources or therapists for support.

Alzheimer’s disease Alzheimers Association Queensland present the answers to the most common questions asked about Alzheimer’s.

Do all “old” people get Alzheimer’s?

The answer is an emphatic NO. Alzheimer’s disease is not a stage of normal ageing. The majority of people will never get Alzheimer’s.

About one in 10 people over the age of 65 may be afflicted, and this incidence increases to about 25-30% of people over the age of 80.

Is there a cure for Alzheimer’s disease?

No. This is a terminal disease. There are no drugs or therapies to halt the progression of the disease, or reverse the damage done. At best, there are both drugs and non-drug therapies to help manage the behavioural changes associated with this disease.

incidence of Alzheimer’s disease and does not run in families. Other members of a family are at no greater risk of developing the disease if an elderly relative is diagnosed with Alzheimer’s.

Although rare, Alzheimer’s disease can occur in people in their 30s, 40s and 50s. This is referred to as Early Onset Dementia and accounts for less than 10% of all cases of Alzheimer’s disease. Scientists believe Early Onset Dementia is genetically transferred across the generations of some families, or in other words, is hereditary. It is this variation of the disease (also called Familial Alzheimer’s) which runs in families.

What is a psychiatrist?

A medical doctor who specialises in the study, treatment and prevention of mental disorders.

As an example, if one of your parents developed Alzheimer’s disease in their 70s or later, you would have no greater chance of developing the disease than what is the normal incidence in the general community.

If however, if you have a parent or close relative who developed the disease while under 60 years of age, there is a greater chance of other family members developing the disease in their younger years as well.

In summary, Alzheimer’s disease, in rare cases, can be hereditary. When it does run in families it affects mostly younger members of the family e.g. those under the age of 65.

What is a neurologist?

A scientist who specialises in the study of the structure, functioning and diseases of the nervous system.

What is a gerontologist?

A scientist who studies the changes in the mind and body that accompany ageing and the problems associated with them.

What is a psychologist?

A person engaged in the scientific study of the mind, mental processes and behaviour.

They are not medical doctors and are not qualified to prescribe drugs.

How long does a person with Alzheimer’s disease live?

This is impossible to predict. The symptoms, severity and rate of progression of this disease vary from person to person. An individual may live up to 20 years or more from the time of diagnosis. On average it appears to be about 10 years.

What is the difference between Alzheimer’s disease and senility?

In the past “going a bit senile” was the term used to describe odd and changing behaviours in some older people. There was little recognition, even amongst the medical profession, of Alzheimer’s disease and its associated behaviour changes. The physical nature of the disease was not well understood, and it was often thought that people with the disease were being intentionally difficult and obstructive. The term “senile” is rarely used nowadays. It is now known that the people who would once have been labeled as senile, are afflicted with a disease over which they have no control.

What is the difference between Alzheimer’s disease and dementia?

Dementia is an umbrella term describing a group of symptoms occurring together (10 warning signs). These symptoms may be due to Alzheimer’s disease which is the most common cause of dementia. They might also be due to other conditions some of which are treatable, which is why a thorough medical assessment is essential.

Is it hereditary?

Alzheimer’s mostly affects older people over the age of 65 years. The common scenario is where one member of a family is affected with the disease late in life. This is known as sporadic

What is a geriatrician?

A medical doctor specialising in the diagnosis and treatment of disorders that occur in old age, and with the care of the aged.

What is a psychogeriatrician?

A psychiatrist who specialises in the diagnosis, treatment and prevention of mental disorders occurring in the aged.

What is ACAT? This stands for the Aged Care Assessment Team, a multi-disciplinary team of health care workers who assess people in their own home to determine the level of assistance the aged person needs to remain living there independently.

The team is also responsible for assessing people for admission into nursing homes. The team is comprised of a nurse, social worker, occupational therapist and physiotherapist.

ACATs are attached to major hospitals.

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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