The Disability Information and Resource Centre

People Who Have Had A Brain Injury Have Rights Too

People who have had a brain injury have the same rights, entitlements and responsibilities as any other member of the community. Every member of the community has the right to make their own decisions and to learn from their mistakes.

The Right to Decision Making and Choices

Every person who has had a brain injury has the right to participate fully in decisions about the events and activities of their daily lives. This includes decisions about how they spend their time, how they spend their money, when they want to eat and when they want to go to sleep. You may not agree with their choice but it is not your decision.

When a person is 18 years of age or over they have the same rights of decision making as any other adult (unless they have had a Public Guardian appointed).

Dignity of Risk - What Does This Mean?

Everybody has the right to make mistakes and learn from their experiences. If you provide care or support for a person who has had a brain injury (as a volunteer, family member or paid carer) you have to ensure the person can look after themselves as much as possible. That means helping the person develop the skills and knowledge to handle any “foreseeable risks”.

When the person has a severe disability you need to assist that person develop ways to compensate for their disability. Very often this means the person will need assistance from rehabilitation professionals.

What Is Disability Discrimination?

If you try to restrict a person’s ability to exercise these rights, because they have had a brain injury, you can be charged with discrimination under the Federal Disability Discrimination Act (1992). Disability discrimination can be either direct or indirect.

“Direct discrimination occurs when a person is - or is about to be - treated less favourably than others because the person - or his or her associate - has a disability.

Indirect discrimination occurs when a condition stops a person with a disability, or an associate of a person with a disability, from doing something.

Disability discrimination

also includes asking for information which can:

• be used to discriminate against a person, and,
• would not be asked of a person without a disability in the same situation.”

For example, asking about a person’s disability during a job interview.

What or Who is the Guardianship Tribunal?

If a person demonstrates a lack of decision making capability, the Guardianship Tribunal may appoint a private guardian or the Public Guardian. The role of a guardian is “to act as a guardian of adult persons unable to manage their own persons”.

A guardian helps a personmake decisions. They might be made responsible for making decisions about how the persons spends their mony, medical treatments that need to be considered, or, the level of support the person needs.

The Guardianship Tribunal may also appoint an estate manager from The Protective Commissioner to manage the person’s financial affairs.

For more information contact The Guardianship Tribunal, The Office of the Public Guardian, or, The Office of the Protective Commissioner.

It’s OK To Complain

Everybody has the right to complain if they feel dissatisfied. Organisations that provide a service to people who have had a brain injury must have a fair and effective complaints policy. This policy needs to:

• be in a format that is easily understood by all consumers.
• be designed to ensure a complaint is resolved quickly and to the satisfaction of the person who made the complaint.
• provide guidance on where the person can go if they are dissatisfied with the way their complaint was handled.

For more information contact the Disability Complaints Service in your State.

Sometimes a Person Who Has a Disability Needs Help and Sometimes They Don’t

If you think a person needs help you must ask the person if they want assistance first - then ask what they would like you to do. Don’t do anything if you haven’t checked with the person first.

To make it easier for you to assist or support a person who has had a brain injury, its helpful to follow these suggestions:

• Maintain the person’s freedom of choice.
• Always explain what you are about to do and why - then do what you said you would do.
• Listen to what the person is saying, even if it takes you a while to understand.
• Don’t pretend you know what the person is feeling.
• Don’t try to win arguments - stick to the facts.
• The person may get tired very quickly.
• Don’t tease, embarrass or get angry with the person just because they don’t do what you wanted.
• Be patient.

* Source : Brain Injury Association of NSW

Brain Injury, Psychiatric Disability, Intellectual Disability
- Are They The Same?

NO - each type of disability is different. This Fact Sheet is only a summary of these three types of disability.

Brain Injury

Brain Injury is defined as a loss of brain function caused by:

• Accidents (motor vehicle accidents are the cause of 70% of all brain injuries)
• Poisoning
• Stroke
• Brain tumours
• Infections
• Lack of oxygen.

As a direct result of a brain injury a person may develop impairments in one or several aspects of their life including:

• Loss of mobility
• Difficulty in solving problems or making decisions
• Fatigue and tiredness
• Problems with memory & concentration
• Sticking to the one idea for a long time
• Easily distracted
• Quickly aroused to anger or sadness.

A brain injury that is “acquired” as an adult does not affect previously stored memories & experiences. A person may have little or no change in their I.Q. test scores because they can still draw on their past memories and skills. However, a person’s level of adaptive functioning (problem solving, organisation, personal management) is often impaired. The individual’s self identity and expectation’s of life are still strongly shaped by their social and intellectual development before the brain injury.

Brain injury cannot be “cured”. The impairments are caused by permanent damage to the brain. However, over time, many people return to work and maintain a healthy and enjoyable lifestyle.

Psychiatric Disability

Psychiatric Disability is a range of functional difficulties often linked with a past or current mental illness, associated institutional dependence or the adverse effects of medications.

Mental illness is characterised by the presence in a person of one or more symptoms including:

• Delusions
• Hallucinations
• Serious disorder of thought form
• Severe disturbance of mood
• Sustained or repeated irrational behaviour.

A person who has a mental illness or has had a mental illness in the past does not necessarily have a psychiatric disability. The three most common disorders are:

• Schizophrenia
• Manic-depressive disorder
• Depression.

Medication can often be used to assist the person cope with their disability. However, some medications create a range of additional problems. People who have a psychiatric disability can enjoy a satisfying and fulfilling life.

Intellectual Disability

Intellectual disability refers to a slowness to learn and process information which can affect how a person functions in society. Intellectual disability is not a sickness, it cannot be cured and it is not medically “treatable”. While people with intellectual disability often encounter difficulties in learning and development, it is not an inability to learn. People with intellectual disability can and do learn a wide range of skills throughout their lives. It is through appropriate levels of support, early intervention and educational opportunities that the effects of intellectual disability can be minimised.

Intellectual disability is often evident from birth. The period of one’s life between birth and adulthood, 0-18 years, is referred to as the “Developmental Stage”. The fact that intellectual disability occurs during the developmental stage is one important factor which distinguishes it from other types of disability.

There is no one identifiable cause for intellectual disability, however there are some reasons that we do know about which include:

• brain damage before birth due to conditions such as rubella, a drug or diet problem.
• brain damage resulting from a lack of oxygen during the birth, eg as a result of a prolonged labour.
• brain damage after birth due to an illness such as encephalitis or an accident.
• abnormal chromosome count resulting in eg Down Syndrome.

Multiple Disabilities

A person can have more than one form of disability. For example, a child can develop an intellectual disability and a physical disability as a result of a brain injury.

A person who sustains a brain injury or has an intellectual disability has the same chances of developing a psychiatric disability as any other member of the community.

Any form of disability can have very serious effects on the lives of people who have the disability and those that support and assist them.

Conclusion

People who have a disability have the same rights as any other member of the community. Just like every other member of the community they are individuals who have personal needs that are unique to them.

* Source : Brain Injury Association of NSW

Yes, anyone can get a brain injury, even small children and infants.

Brain injury is also known as:

• Acquired Brain Injury
• Traumatic Brain Injury
• Head Injury
• Acquired Cerebral Insult
• Drug and Alcohol Related Brain Injury

Brain Injury: A Definition

Brain injury is not a disease or something you can “catch”. Brain Injury is defined as a loss of brain function caused by:

Accidents

• road accident
• sport and/or work related
• assaults

Poisoning

• drinking too much alcohol
• overuse of prescribed drugs
• use of illegal drugs
• petrol and chemical sniffing

Stroke

• rupture of a blood vessel in the brain
• blockage of blood supply to the brain

Brain tumours

• cancerous
• non-cancerous

Infections

• meningitis
• encephalitis

Lack of oxygen

• near drowning
• severe asthma attack
• lack of blood flow to the brain

A brain injury can have very serious effects on the lives of children who sustain the injury and the people who support and assist them.

The Statistics

Each year in NSW, about 10,000 people will sustain a Traumatic Brain Injury. 70% of these injuries will be caused by motor vehicle accidents.

Of all the injuries about 1,000 people will have a permanent disability, and, about 300 will have a severe disability.

Over 3,000 children either die or are injured in traffic accidents each year.

What Can You Do If You Think A Child Has Had A Brain Injury?

If a child has suffered a brain injury, however mild, and develops any of the following symptoms report immediately to your local doctor or a hospital:

• Headache
• Giddiness
• Nausea or vomiting
• Drowsiness

You may notice other changes in the child during the months after the injury. For example:

• Difficulty with new school work or new activities.
• Difficulty concentrating or remembering instructions.
• Slowness in thinking about new things.
• Changes in their ability to join in the same games and activities as they used to.
• Changes in their ability to understand what was said or follow a conversation.
• Changes in their ability to re-tell the day’s events or find the right word.
• Inappropriate sexual discussions or activities.

How Can You Help Children Avoid Brain Injury?

• Encourage them to wear a correctly fitted and fastened helmet or stack-hat when using skates, roller-blades, push-bikes and skateboards and riding a horse or mini-bike.

• Encourage Councils to provide safety fencing and speed humps near schools.

• Encourage children to cross at traffic lights when going to and from school.

• Ensure swimming pools are safely fenced and covered.

• Keep ladders, tools, chemicals and paints safely stored where children cannot get to them.

• Supervise small children when they play in the yard to make sure they don’t run on to the street and get hit by a motor vehicle (a major cause of injury).

• Always place containers of water or fluids where children cannot reach them. Only give a child medication prescribed by a doctor.

• Put your medication or alcohol where the children cannot reach them. Drive carefully and keep your speed under the limits.

• Teach young adults how to enjoy a drink without getting drunk

• Encourage children and young adults not to experiment with drugs or chemicals.

* Source : Brain Injury Association of NSW

Changes That May Result From A Brain Injury

Brain Injury results in a wide range of changes to a person’s behavior, their sensitivity to surroundings and their thinking capabilities.

• Some changes are permanent.
• Some changes are only temporary.

Which Changes Are Permanent?

Sometimes, a person who has had a brain injury can appear to overcome all of the effects of their injury.

For example, a person had over 40% of their brain removed after a serious accident. After intensive rehabilitation, it was hard to tell if they had an injury at all. Another person had a relatively mild brain injury and now has to live with chronic pain, a short attention span and many other difficulties.

When a person sustains a brain injury its impossible to predict how much they will recover and how long it will take. There is no formula to tell you which results are permanent and which are temporary. The incredible ability of the human brain to compensate for a loss of some functions continues to amaze medical professionals.

Neuropsychologists and neurologists test the functions of a person’s brain after a person sustains a brain injury. This allows the medical team to establish a rehabilitation program aimed at helping the person overcome their specific difficulties.

What Are The Changes?

There are too many possible changes to list them all here. Changes may (but not always) involve the person’s personality, thinking and learning and physical abilities.

Personality Changes

• The person may be quick to anger - a loud noise, or someone disagreeing with them may trigger an outburst of aggression. This is particularly common when the person is still in Post Traumatic Amnesia (PTA).

Many people who have had a brain injury also become more aggressive as the years pass by. This may be due to a range of factors such as frustration at living with the effects of their injury receiving inappropriate care, and boredom due to limited opportunities for recreation and personal development.

• The person won’t always think of others - for example, the person may become annoyed they can’t watch their favorite television program, even if someone else was watching their favorite program first. Or, the person may become agitated if they aren’t served immediately they walk into a shop or bank.

• The person is very talkative - they may also jump from one topic to another during a short conversation, or, find it very hard to stay focused on the point they were trying to make.

• The person may rush into things - they may rush into a job, make lots of errors and then rush onto another job without checking the first one.

• The person doesn’t believe they have changed - they may remember a lot about what they used to be able to do and think they can still do it. Even when tests confirm the person has lost the skills they might not believe its true.

• The person has less control over emotions - the person may laugh or cry at the slightest suggestion of joy or sadness.

• The person may make inappropriate sexual advances - They may be unable to control their sexual urges as a direct result of their injury. This may result in varying degrees of harassment or others or increased levels of sexual activity.

Physical Changes

• Loss of sight or hearing - the person may have complete or partial loss of their sight or hearing. This loss may be temporary or permanent.

• Reduced control over movements - the person may have slow movements or total loss of control of some muscles.

• Slow or slurred speech - the person may speak slower or be difficult to understand.

• Fatigue - the person may need to have a rest several times during the day as they get very tired very quickly.

• Paralysis - the person may have permanent paralysis in some parts of their body.

Thinking-Learning Changes

• Memory - loss of short-term memory may result in “forgetting”. For example the person may forget to attend meetings, forget why they went to the shop or forget what they have just been taught. Sometimes the person’s long term memory may be affected as well, so that they don’t remember past events.

• Problem solving and decision making - The person may have difficulty seeing how an action caused an effect. This may mean that the same mistakes are made over and over again, as the person can’t understand what is causing the problem.

• Concentration - the person may switch from one task to another, or may have difficulty staying focused on the one thing. They may also be easily distracted by sights, sounds, feelings or temperature.

• Getting started - the person may have difficulty starting something, or they may not feel like doing anything.

• Inflexible or sticky thinking - the person may need to stick to a rigid routine, or they may get stuck on one idea.

• Understanding things - the person may have trouble taking phone messages, understanding a good joke, following meetings, or reading.

• Saying what they mean - the person may have trouble finding the right words, using the right body language or getting to the point.

• Sequencing - the person may have trouble getting things in the right order. For example, remembering to wash the dishes before you dry them.

• Slow to respond - it may take the person longer to understand and respond to what is going on.

• Perception - the person may confuse similar sounding words and numbers, and have trouble finding new places.

* Source : Brain Injury Association of NSW

What To Say, Or Do, To Someone Who Has Had A Brain Injury.

People who have had a brain injury have the same rights and entitlements as any other member of the community.

If you restrict a person’s activities in any way because you know they have had a brain injury, you can be charged with discrimination under the Disability Discrimination Act (1992).

What If A Work Colleague, Friend Or Relative Has Had A Brain Injury?

First things first. You may have noticed several changes in the person’s behaviour. No two people who have had a brain injury will have the same type or degree of impairment, so its important to determine exactly which changes affect the person you know. Examples of changes that may occur include:

• Fatigue - tiredness, even after only an hour of work.

• Concentration difficulties - trouble filtering out little distractions. This makes it hard to concentrate and stay focused.

• Memory difficulties - short term memory loss and some permanent memory loss is common.

• Slowed reaction time - taking longer than usual to understand you, and then still to give you a response.

• Headaches and chronic pain - the brain also controls feelings of pain, so the person may be in constant pain.

• Emotional highs and lows - laughing or crying when it does not fit the situation.

• Deafness and blindness - temporary or permanent loss of sight or hearing.

• Paralysis - one side of the person’s body, or an arm, or a leg may be permanently paralysed.

• Muscle control - slow movements or partial loss of control means it may take longer to complete certain activities.

• Speech difficulties - communication may be difficult because of slow or slurred speech.

• Problem solving and decision making difficulties - difficulty recognising a problem and then understanding what actually caused the problem.

• Socially unacceptable behaviour - swearing, being inappropriately crude or making unreasonable sexual demands.

When a person sustains a brain injury it often results in permanent disability. Although the person may be able to learn how to successfully manage these effects, it can take many years.

These permanent effects can’t be fixed by a good night sleep or a change in lifestyle.

What Do You Say Or Do?

Now you have an idea of the specific difficulties that people who have had a brain injury have to manage each day, you can begin to lend assistance and provide support.

BUT, you must ask the person if they want assistance first, then ask what you have to do. A person who has had a brain injury retains the right to make their own decisions and learn from their own mistakes.

To make it easier for you to assist or support a person who has had a brain injury, its helpful to follow these suggestions:

• Take it slowly - slow down your physical movements and your speech if the person seems confused, afraid or anxious.

• Maintain the person’s freedom of choice - you have no right to make decisions on behalf of the person, or restrain the person in any way, unless you are a Police Officer and the person has broken the law.

• Always explain what you are about to do and why - then do what you said you would do. Keep the person informed and keep surprises to a minimum.

• Listen to what the person is saying, even if it takes you a while to understand - ask the person to repeat anything you don’t understand.

• Don’t pretend you know what the person is feeling - if you haven’t had a brain injury, you can’t know what the person is going through. Don’t tell the person you know how they feel - this is an insult.

• Don’t try to win arguments - stick to the facts in all discussions. Its OK to agree to disagree.

• The person may get tired very quickly - don’t think the person is just being lazy. Allow the person to have regular rest breaks.

• Don’t tease, embarrass or get angry with the person just because they don’t do what you wanted - regardless of how hard the person tries or how much you want the person to succeed, some activities will be just too difficult at that time. Perhaps another attempt on the following day will be more successful.

• Be patient - it may take the person a while to finish but if they can do it, they will.

What About Returning To Work Or Driving A Car?

People who have had a brain injury have the right to return to work, or be retrained so they can continue to do their job. If the person still has the capability to do work, they should be given a chance to do so. Tests by medical and occupational professionals will provide you with the information about the person’s capabilities.

The person also has the right to relearn how to drive a car, as long as they have the capability to do so. Medical and occupational professionals make these judgements.

If you are seriously injured, how would you like to be treated?

* Source : Brain Injury Association of NSW

What is it and how does it happen?

Brain Injury Is Also Known As:

• Acquired Brain Injury
• Traumatic Brain Injury
• Head Injury
• Acquired Cerebral Insult
• Alcohol Related Brain Injury

Brain Injury: A Definition

Brain injury is not a disease, or something you can “catch”. Brain Injury is defined as a loss of brain function caused by:

Accidents

• road accident
• sport and/or work related
• assaults

Poisoning

• drinking too much alcohol
• overuse of prescribed drugs
• use of illegal drugs
• petrol and chemical sniffing

Stroke

• rupture of a blood vessel in the brain
• blockage of blood supply to the brain

Brain tumours

• cancerous
• non-cancerous

Infections

• meningitis
• encephalitis

Lack of oxygen

• near drowning
• severe asthma attack
• lack of blood flow to the brain

A brain injury can have very serious effects on the lives of people who sustain the injury and those that support and assist them.

The Statistics

Each year in NSW, about 10,000 people will sustain a Traumatic Brain Injury. 70% of these injuries will be caused by motor vehicle accidents. 70% will involve people aged between 16 and 24 years. Of all the injuries about 1,000 people will have a permanent disability, and, about 300 will have a severe disability.

Plus, at least 37,000 Australians suffer a stroke each year. This often leads to brain injury.

Plus, approximately 2% of the Australian population is estimated to have developed a brain injury related to the effects of alcohol and, or drug abuse.

What Can You Do If You Think A Work Colleague, Friend Or Relative Has Had A Brain Injury?

If a person has had a mild brain injury, you might not notice any significant changes. However, you may see effects such as:

• Memory loss - short and long term
• Easily distracted
• Inability to do the same work as they used to
• Quickly aroused to anger or sadness
• Sticking to the one idea for a long time
• Inability to solve problems or make decisions
• Get tired very quickly
• Sudden changes in sexual desires

Ask them to see a doctor, or, talk to your doctor about it.

There are Brain Injury Rehabilitation Programs in place in several locations around New South Wales. These centres have the staff and expertise to arrange assessment and rehabilitation programs for anyone who has had a brain injury.

These centres are located in Sydney and:

In Sydney, the Prince of Wales Children’s Hospital and the Children’s Hospital at Westmead have specialists to help children who have had a brain injury.

The Liverpool Hospital, Westmead Hospital and Ryde Rehabilitation Hospital have Brain Injury Units designed specifically for people who have had a brain injury who need to undergo rehabilitation.

The Royal Prince Alfred Hospital in Sydney has specialists to help people who have sustained an alcohol or other drug related brain injury.

How Can You Prevent Brain Injury?

• Wear a helmet or stack-hat when using skates, roller-blades, push-bikes and skateboards.

• Use ladders correctly and wear a hard-hat in safety areas in the factory, warehouse or workshop.

• Enjoy a drink but don’t get drunk.

• Don’t use drugs or chemicals without a doctors prescription.

• Drive carefully and don’t speed.

* Source : Brain Injury Association of NSW

Driving is quite a complex activity. You need to be able to :

• concentrate well
• react quickly
• make quick decisions
• plan ahead
• remember road rules
• have good visual skills
• physically operate the car

These skills can be affected by a brain injury.

What Do You Need to Do If You Have Had a Brain Injury and Want to Drive Again?

You have to inform the Roads and Traffic Authority (RTA) that you have had an injury or illness or epilepsy which may affect your ability to drive. If you do not inform the RTA or don’t follow their recommendations and continue to drive, you are putting yourself and other traffic participants at risk. In the case of an accident you may find that your insurance does not cover you, because your fitness to drive has not been assessed.

The RTA will most likely request information from your doctor to determine whether you are medically fit to drive. Your doctor or the RTA may want you to undergo an occupational therapy driving assessment. Occupational therapists who conduct driving assessments are specially trained to assess your vision, physical skills and cognitive skills while you drive. The assessment takes up to 3 hours and includes a one hour drive in a car with the occupational therapist and a driving instructor. The focus of the assessment is not on cancelling your licence but on finding out what difficulties you are experiencing while driving and how those difficulties may be overcome.

Difficulties With Driving Can Include:

• feeling less confident when driving
• people telling you they feel unsafe driving with you
• tiring quickly when driving
• finding it difficult to manage busy traffic situations
• inability to react as quickly in an emergency as you did before your brain injury
• experiencing problems positioning the car correctly on the road
• sometimes not seeing pedestrians or other cars
• having difficulty turning the steering wheel with both hands
• having difficulty operating the brake or accelerator

Recommendations by the Occupational Therapist Following the Assessment May Include:

• teaching you driving techniques to compensate for your problems

• teaching you to use car modifications, such as spinner knobs, panoramic mirrors, left foot accelerators, power steering etc. There is a large range of car modifications on the market and many can be suited specifically to the needs of the driver.

What About Driving a Truck or a Motor Cycle?

If you are holding a truck or motorcycle licence you will need to be assessed for each individual licence class you are holding. This is because the driving demands are quite different for different types of vehicles. For example, a person with balance problems may be able to drive a car, but is likely to experience problems riding a motor cycle.

Can I Lose My Licence?

In some cases the occupational therapist may recommend that a person should not drive and the RTA may cancel their licence. This happens only after the occupational therapist is certain that the person is unable to learn ways of compensating for their problems.

Who Pays For My Driving Assessment?

If you have an insurance claim, your insurance is likely to pay for the assessment. If you don’t have an insurance claim, you may have to pay a fee for the assessment. A driving assessment can also be provided as part of your rehabilitation programme with the Brain Injury Rehabilitation Programme or Commonwealth Rehabilitation Service (CRS).

If you think you need a driving assessment or if you would like to find out more information, you can contact the Occupational Therapy department at the Brain Injury Rehabilitation Program in your area. They may have an occupational therapist who conducts driving assessments. If not, they will be able to tell you about the driving assessment service nearest to you.

* Source : Brain Injury Association of NSW