Understanding brain injury specialist rehabilitation in NSW

Introduction

This information was written for health service planners, other professional bodies and clinicians.

Brain injury specialist rehabilitation

Brain injury specialist rehabilitation is a specialty discipline within rehabilitation that is most relevant to a subset of people who have experienced a brain injury. It is particularly relevant when the impacts of the brain injury produce acute, complex and functionally significant abnormality across multiple domains of cerebral function.

Most commonly brain injury specialist rehabilitation is for people with severe traumatic brain injury (TBI). Some non-traumatic brain injuries, often referred to as acquired brain injury (ABI), for example some hypoxic brain injuries and some strokes, have similar characteristics, effects and impacts to severe TBI. The nature of these brain injuries and subsequent impairments and impacts are described in Part A: Brain injury and specialist rehabilitation.

From injury to living in the community

The brain injury specialist rehabilitation pathway goes from the point of injury to the client being back in the community. Recovery and rehabilitation from severe brain injury is typically most rapid in the first three to six months but may continue for several years. The pathway includes acute hospital care and rehabilitation, in-patient rehabilitation, transitioning to community living and living in the community.

This pathway is unique for each person, it includes health and community services and has multiple sources of funding including health, community services, disability, motor vehicle and other insurance.

Brain injury specialist rehabilitation includes values, principles, pathways, wrap around services and special environments. Brain Injury Rehabilitation Programs (BIRPs) are located within NSW local health districts (LHDs) and the BIRPs are networked through the Agency for Clinical Innovation (ACI). The network is called the Brain Injury Rehabilitation Directorate (BIRD). The essence of brain injury specialist rehabilitation is described in Part B: Values, principles, pathways and core activities.

Integrated rehabilitation, care and support

The pathway of recovery following severe brain injury is often complex. A range of different health and non-health services are needed across the continuum of recovery, rehabilitation and community resettlement. A whole-of-person approach provides the framework for integrating person-centred health and non-health goals to achieve maximum recovery, adjustment to the impact on the hopes, dreams and aspirations of the individual.

There are a variety of health service settings and pathways that may be needed by the person before beginning the acute hospital setting phase, or being back in the community. Health services and pathways become integrated with other government and non-government services and pathways to meet the complex needs of people with a new brain injury causing disability. Services needed can include housing, income and decision-making supports and services that could be provided by the National Disability Insurance Scheme (NDIS), national government funded aged care services, NSW icare and Lifetime care, and private insurance.

Parts C, D, E and F describe the NSW services, settings, pathways and funding.

Produced by Brain Injury Rehabilitation Directorate

SHPN (ACI) 200050

ISBN 978-1-76081-354-3

Version: 1 Trim: ACI/D21/1093

Part A: Brain injury and specialist rehabilitation

What is rehabilitation?

Rehabilitation is an important part of the recovery process after surgery or significant injury. Rehabilitation has a whole-of-person approach that aims to achieve the highest possible level of function, maximise quality of life and minimise the need for ongoing health and community support. Rehabilitation aims to restore function across physical, psychological, social and vocational domains.

Rehabilitation involves identification of a person’s problems and needs, relating the problems to relevant factors of the person and the environment, defining rehabilitation goals, planning and implementing the measures, and assessing the effects. The World Health Organization defines rehabilitation as ‘a set of measures that assist individuals who experience, or are likely to experience, disability to achieve and maintain optimal functioning in interaction with their environments’.60 The concept of rehabilitation is broad, and rehabilitation:

  • targets improvements in individual functioning
  • includes making changes to an individual’s environment
  • reduces the impact of a broad range of health conditions
  • can occur for a specific period of time, involve single or multiple interventions delivered by an individual or team and typically addresses goals that are meaningful to the person
  • can be needed from the acute or initial phase immediately following recognition of a health condition through to post-acute and maintenance phases.

Rehabilitation outcomes

Rehabilitation care contributes to the health and wellbeing of the community by improving health outcomes and reducing disease burden, reducing healthcare costs and costs of social services, reducing disability and improving community participation of people with a disability, and improving quality of life. Rehabilitation care aims to minimise or prevent disability, support people to improve their participation in life, and reduce the impact on families and the community.

Rehabilitation care helps people achieve and maintain optimal function in interaction with their environment through five outcomes.

  • Prevention of the loss of function
  • Slowing the rate of loss of function
  • Improvement or restoration of function
  • Compensation for lost function
  • Maintenance of current function.

Rehabilitation principles

The Principles to Support Rehabilitation Care provide more details on these principles.40

These principles are fundamental to all levels and types of rehabilitation care. Collectively, these principles inform the planning of rehabilitation services and how those services operate. Enacting these principles creates an environment and culture where person-centred rehabilitation flourishes.

Brain injury specialist rehabilitation

Brain injury specialist rehabilitation is a specialty discipline most relevant to a subset of people who have experienced a significant brain injury. It is particularly relevant when the impacts of the brain injury produce acute, complex and functionally significant abnormality across multiple domains of cerebral function, including:

  • cognitive impairment
  • behavioural and personality change
  • neurological impairment
  • neurologically mediated medical issues
  • multi-trauma
  • lifestyle and participation restriction.

The majority of people entering brain injury specialist rehabilitation are likely to have experienced traumatic brain injury.

However, it is recognised that other causes of acquired brain injury can produce an equivalent symptom cluster, e.g. hypoxia, encephalitis or spontaneous intracerebral haemorrhage, and that such affected individuals may also be eligible for brain injury specialist rehabilitation.

Unique elements in brain injury specialist rehabilitation

Severe traumatic brain injury has unique characteristics, effects and impacts, which in turn require unique elements in brain injury specialist rehabilitation. Some of these elements include changes to the environment in which the rehabilitation is provided, how the rehabilitation is provided and what rehabilitation is made available to meet the unique demands of each individual.

For example, the physical mechanisms of a typical severe traumatic brain injury causes damage in multiple areas of the brain. This damage causes various affects, often including multiple cognitive impairments, which impact on the person’s life and their family and carers. This requires the rehabilitation process to be able to manage and work with multiple cognitive impairments and their subsequent impacts.

See Inclusion, exclusion and prioritisation criteria for details on criteria for brain injury specialist rehabilitation.

Brain injury rehabilitation

A person admitted to a Brain Injury Rehabilitation Unit with a brain injury has:

  • damage to multiple areas of the brain
  • multiple cognitive impairments
  • a non-progressive injury
  • significant life impacts across time
  • a willingness and/or the support to engage in the rehabilitation process.

Rehabilitation can make a positive difference to the person’s future life

Acquired brain injury

An acquired brain injury (ABI) is an injury to the brain which results in deterioration in any of the following areas of functioning:

  • cognition
  • physical skills
  • communication
  • emotional wellbeing
  • social skills
  • independence.

These impairments may be either temporary or permanent due to cause and severity.

Part of Paul's story

The injury

Paul has a snow skiing accident

Paul's story illustrates one example of services and experiences. Every experience is different.

Paul's complete story

A brain injury can occur as a result of external trauma to the head of sufficient force to impact the brain, identified as traumatic brain injury. Other damage to the brain from stroke, tumour, hypoxia, infection, substance abuse or degenerative neurological diseases, e.g. multiple sclerosis, Huntington's disease, Parkinson's disease, motor neurone disease and Alzheimer's disease is identified as ABI.

Brain injury is often referred to as a ‘hidden disability’ because it is not always obvious, especially among people who have mild or moderate physical disability. It can, however, result in significant restrictions on an individual’s ability to participate fully in education, employment and other aspects of life. Relationships with families, friends and carers can also be affected by personality and behavioural changes.

Not all ABIs are appropriate for brain injury specialist rehabilitation.

Injury, impairments and impacts

Traumatic brain injury (TBI) is the most common type of brain injury appropriate for brain injury specialist rehabilitation and it has a set of unique characteristics, effects and impacts, which require the unique elements in brain injury specialist rehabilitation.

To understand the essentials of brain injury specialist rehabilitation, it is helpful to understand TBI and severe TBI in particular.

The key takeaway messages from understanding severe TBI are useful for understanding the requirements of brain injury specialist rehabilitation.

Part of Paul's story

Getting immediate help

Emergency

Mountain retrieval, ambulance, local hospital treatment, helicopter transfer to metro hospital

Surviving

Acute

Neurosurgery, intensive care, inpatient therapy

Paul's complete story

TBI occurs as the result of some external force being applied to the brain in an accident or trauma.

The mechanism of the injury itself is a key factor in what makes rehabilitation different for people with TBI from other neurological brain injuries.

In TBI there is an external force from an accident or trauma that may result in the brain being penetrated by objects, cut by internal bony skull ridges, torn, stretched, bruised or become swollen from the twisting and shearing forces as the brain moves around inside the skull, or is squashed when the skull is compressed or split open. Oxygen may not be able to get through to brain cells and there may be bleeding. Some brain cells will die while others recover partially or completely. The pattern of intact cells will be quite scattered.

Depending on the type and velocity of the forces affecting the brain, different areas throughout the whole brain are affected. This is different from stroke where a clot prevents oxygen travelling to the cells supported by that blood vessel, or where a blood vessel might burst and affect the immediate area and possibly the area distal to the bleed if the blood supply is cut off. The damage is limited to the area of the brain supplied by that vessel, e.g. middle cerebral artery, and other areas remain intact.

Common mechanisms of TBI

Closed

  • Crush injuries with compression of the skull caught between two hard surfaces.
  • Acceleration and deceleration injuries: injuries in which the head is in motion and then abruptly comes to a halt. For example, if a car hits a tree, the car suddenly stops, and the driver's head hits the steering wheel. The brain within the skull still has forward momentum and can hit the inner surface of the skull (which has bony edges) with some force, causing internal bruising, lacerations and bleeding.
  • Diffuse axonal injury: the twisting motions or sudden changes in brain momentum that accompany some accidents may cause the bundles of nerve fibres (brain white matter) to be stretched or shear. The term closed head injury is often used to describe this type of TBI because the damage to the brain occurs as the result of these internal mechanisms but usually with the skull remaining intact.

Open

  • Penetrating injuries: this describes cases where some external object, e.g. knife or arrow, pierces the skull and there is direct contact with underlying brain tissue.

Adults

In Australia, the annual incidence of TBI resulting in hospitalisations is estimated to be 150 per 100,000 and cost the Australian economy $8.6 billion per year in 2008.1

Khan et al (2003) analysed Australian data while determining the severity of TBI to provide an epidemiological profile of the incidence of adults admitted to hospital for TBI.22 It is about 150 per 100,000 population per year.

  • In the under 65-year-old group the incidence of TBI peaks in the age group 15-35 years.
  • The ratio of patients aged under 65 years is 3.4 males to 1 female, a differential largely thought to be related to risk-taking behaviour among young males.
  • Motor vehicle-related trauma accounts for about two-thirds of moderate and severe TBI, with falls and assaults being the next most common causes.
  • Alcohol is associated with up to half of all cases of people admitted with TBI.
  • Prevalence of mild TBI is likely to be an underestimate due to classification and diagnostic errors and because a large proportion of people with mild TBI do not present to hospital.
Table 1: TBI rates by severity category in 2008
Category Rate per 100,000

Mild

64 to 131

Moderate and severe

12 to 14

All

150

Children

In NSW a retrospective study determined the demographics, causes, treatment and outcome of TBI in patients admitted to The Children’s Hospital at Westmead emergency from 2006 to 2011.3

Over the six-year period, there were 1489 presentations at The Children’s Hospital at Westmead. The demographics and statistics outlined:

  • gender: 65% were male and 35% were female
  • age: the mean age was seven years
  • severity: 93% mild, 1.5% as moderate and 5.5% as severe
  • sports and recreational injuries accounted for 26% of all TBI presentations
  • motor vehicle accidents accounted for 77% of all TBI deaths.

In NSW there are two common ways of prospectively measuring the severity of TBI.

  • The level of responsiveness and duration of unconsciousness (coma) as measured by the Glasgow Coma Scale.16
  • Duration of post-traumatic amnesia (PTA), evidenced by a period during which the person is disorientated, unable to learn and the inability to know time, place or person (self).

The impact of the injury on the brain determines severity and ranges from concussion to persistent vegetative states and is typically classified from mild to very severe.

The Glasgow Coma Scale is a most useful tool for guiding medical and surgical interventions in the acute phase following injury. The duration of PTA is a most useful tool for determining the outcome following TBI for the individual. People with severe and very severe TBI usually require specialist brain injury rehabilitation.

Mild TBI

A mild TBI is also called a concussion. Most people with mild TBI make a good physical recovery within days, weeks or months. Some experience ongoing problems with living and learning (mild-complicated TBI).

Moderate TBI

About one third of people with a moderate brain injury experience some lifelong problems in functioning.

Severe TBI

Ninety percent of people with a severe brain injury experience lifelong problems in functioning.

Very severe TBI

100% of people with a severe brain injury experience lifelong problems in functioning.

The Care and Needs Scale and Paediatric Care and Needs Scale provides validated tools to measure the level of impact on different domains of functioning after TBI and the hours of support required to maximise participation and minimise disability.56,57

In 2014, Jagnoor and Cameron identified that the mechanisms of recovery are poorly understood and there is considerable variability in patterns of recovery.21

People with very mild and mild TBIs can be expected to recover quickly. However, some will have psychological consequences of the injury that will require assessment and management. Most people experiencing mild TBI recover fully within days to months but a small percentage (1-20%) of individuals continue to experience symptoms three months after injury.

Recovery from moderate or severe TBI tends to follow a negatively accelerating curve, which is most rapid in the first three to six months but may continue for several years.

They considered that much of the early spontaneous recovery after TBI is explained by the resolution of temporary physiological changes. In addition there are regenerative neuronal changes that have been associated with behavioural improvement. However, the potential for regenerative growth is limited, particularly in the case of severe injuries. It is thought that most recovery beyond this occurs through the substitution or reorganisation of neural structures and functions. There is a growing body of evidence to suggest that environmental stimulation and specifically behavioural therapies can alter brain function and organisation after injury.

Because the recovery and rehabilitation from severe brain injury is typically most rapid in the first three to six months (but may continue for several years), the rehabilitation pathway typically goes from the point of injury to the person being back in the community.21

Part of Paul's story

Back at work

Paul and his friend get jobs in the snowfields, where they will share accommodation. Paul keeps in email contact with his case manager, provides updates and shares concerns. Other friends have started working in the area and Paul is happy.

Paul is discharged from the community team 20 months post injury.

Paul's complete story

TBI impacts multiple domains.

The International Classification of Functioning, Disability and Health (ICF) provides clinicians and researchers, policymakers and others with a comprehensive framework for relevant domains of human experience that are affected by health conditions such as TBI (in the context of environmental and personal factors).59

The ICF Core Sets for TBI are intended as an international standard of what to measure. They are not health status measures but instead are a comprehensive list of relevant domains of functioning for TBI. They provide a practical checklist for working with people with TBI in the context of specialised brain injury rehabilitation programs in NSW.

Table 2a: ICF brief core sets for TBI59
A. Body structures B. Body functions C. Activities and participation D. Environmental factors
InjuryImpairmentsImpacts Supports and barriers, impacts
Structure of brain

Consciousness functions

Energy and drive functions

Attention functions

Memory functions

Emotional functions

Higher-level cognitive functions

Sensation of pain

Control of voluntary movement functions

Carrying out daily routine

Conversation

Walking

Self-care

Complex interpersonal interactions

Family relationships

Acquiring, keeping and terminating a job

Recreation and leisure

Products and technology for personal use in daily living

Products and technology for personal indoor and outdoor mobility and transportation

Immediate family

Friends

Social security services, systems and policies

Health services, systems and policies*

Table 2b: Additional categories in the ICF Comprehensive Core Set for TBI
A. Body structures B. Body functions C. Activities and participation D. Environmental factors
InjuryImpairmentsImpacts Supports and barriers, impacts
Structure of brain

Temperament and personality

Sexual functions

Sleep functions

Handling stress and other psychological demands

Intimate relationships

Making decisions

Extended family

Acquaintances, peers, colleagues, neighbours and community members

* These 23 categories in the Core Set are a starting point for what’s typical, not an exhaustive list of all possible impairments and impacts.

Part of Paul's story

Re-learning skills

Inpatient specialised brain injury rehabilitation, case management, TLP with shared accommodation

Back into the community

At home

Rehabilitation training with father and community therapists, case management, GP care

Paul's complete story

The specific impairments are particular to each person. These impairments can be profound and long-term with personality and behaviour change leading to significant lifestyle effects.

In addition psychological distress post TBI is highly prevalent after a TBI and can present with mixed mental health issues with features of depression, anxiety, anger and stress.

Examples of common impairments

Neurological impairment (motor, sensory and autonomic)

  • Sleep disturbance – insomnia, fatigue
  • Medical complications – spasticity, post-traumatic epilepsy, hydrocephalus
  • Heterotopic ossification
  • Sexual dysfunction

Cognitive impairment

  • Memory impairment, difficulty with new learning, attention and concentration, reduced speed and flexibility of thought processing, impaired problem-solving skills
  • Problems in planning, organising and making decisions
  • Language problems – dysphasia, problems finding words and impaired reading and writing skills
  • Impaired judgment and safety awareness
  • Cognitive fatigue

Personality and behavioural changes

  • Impaired social and coping skills, reduced self-esteem
  • Altered emotional control, poor frustration tolerance and anger management, denial and self-centredness
  • Inappropriate social behaviour including increased anger or aggression
  • Reduced insight, disinhibition, impulsivity
  • Psychiatric disorders – anxiety, depression, post-traumatic stress disorder, psychosis
  • Apathy, amotivational states

Part of Paul's story

Continuing to re-learn

Living skills

ADL support and rehabilitation training provided by father, case management, return to work program, social work

Living in the community

Services and activities

ADL support provided by father, community team monitoring, case management

Paul's complete story

The impairments caused by the TBI have significant impacts on the person, their life, family and friends and their ability to live and work in the community.

Families also face many challenges themselves as they adjust to the impact of the changes to the person with TBI, as well as their own circumstances, for example giving up work to be the caregiver, changes in sibling and parent relationships. Families remain the constant presence amid a continually changing spectrum of providers and professionals as treatment and recovery progress.

Part of Paul's story

Back into the community

At home

Rehabilitation training with father and community therapists, case management, GP care

Paul's complete story

Families share unique roles as:

  • observers throughout all stages of their loved one’s care
  • experts with a dual perspective of pre- and post-knowledge of abilities and difficulties
  • communicators and liaisons with professional caregivers
  • advocates for their loved one.

Examples of impacts and social consequences

Life impacts for person with TBI

  • Unemployment and financial hardship
  • Inadequate academic achievement
  • Lack of transportation alternatives
  • Inadequate recreational opportunities
  • Loss of pre-injury roles, loss of independence
  • Increased service utilisation

Increased risks for person with TBI

  • Substance abuse
  • Mental health problems
  • Homelessness
  • Social isolation
  • Suicide

Person with TBI: challenging behaviours

  • Inappropriate social behaviour
  • Verbal aggression
  • Adynamia (lack of strength or vigour)

Person with TBI’s relationships

  • Difficulties in maintaining interpersonal relationships
  • Marital breakdown
  • Not forming relationships and remaining single

Life transition impacts

  • Hospital to community
  • Return to work and study if possible, or alternatives if not possible

Sources for stress for family members

  • Family members having to give up work and being impacted financially
  • Increased level of conflict due to temper control problems
  • Family members (especially partners) having to take on new roles if partner with TBI is no longer able to play these roles
  • Family members who play a caring or support role losing touch with their own social networks and becoming more socially isolated
  • Family members experiencing grief or depression and mourning for the person they knew before the TBI
  • Family members experiencing post-traumatic stress if they witnessed or were involved in the accident that caused the injury

Developmental considerations with children and young people

In addition to understanding the injury, impairments and impacts described above, brain injury specialist rehabilitation with children and young people also needs to consider:

  • a child or young person’s developmental stages and challenges
  • family-centred care
  • life transitions for children and young people
  • transition to decision-making for adolescents and young people and the practice implications of these perspectives.

There are many developmental stages and milestones from birth to adulthood.

For example milestones for babies relate to the baby’s ability to move, see, hear, communicate and interact with others. There are physical, motor, cognitive, language and social milestones for each age group from babies to adults.

The development and functioning of the brain are some of the essential ingredients for meeting milestones.

‘Formerly, it was a widely-held, but unsubstantiated belief that children were wonderfully resilient and could bounce back even after a severe brain injury and that in general, the prognosis for functional recovery of previously-learned skills is better the younger the child is when the injury is acquired.

‘However, more recent research suggests that younger children are just as, or perhaps even more, vulnerable to the effects of brain injury than people who are injured in later childhood. Moreover, the prognosis for acquiring new skills is worse the younger the child is at the time of the brain injury.

‘Children's brains are still undergoing significant development. While most brain maturation occurs in the early years, birth through age 5, five peak maturation periods in normally developing children have been identified. These peaks occur at approximately 3-5 years, 8-10 years, 14-15 years, 17-19 years, and 21-22 years.’14

After brain injury, these maturation peaks may be significantly affected depending on the age of the child, the type of brain injury and the region of the brain affected.

Exposure to experience and to more formal learning through education allows neural pathways to develop new connections throughout young adulthood.

If damage to the brain occurs at any time during brain development in childhood and adolescence, then the normally occurring neuronal growth may be disrupted impacting on the child’s development of skills and slow the pace of their development over time.

Family-centred care is an approach to healthcare that provides an expanded and enhanced view of how care should be provided to individual clients in the context of the strengths and needs of their families.23 Family-centred care is viewed as critically important in providing healthcare to children, especially those with serious medical conditions.

In the family-centred care of children, the client and his or her family members are fully involved with healthcare providers to make informed decisions about the healthcare and support services the child and family receive. In addition, in a family-centred approach to healthcare, all aspects of the structure and process of care are oriented towards supporting and involving the family in the care experience with the goal of improving quality and other important outcomes, including psychosocial outcomes, clinical outcomes, resource distribution, and patient and family satisfaction.23

Children and young people having brain injury specialist rehabilitation may also move through life transitions including one or more of the following:

  • from hospital to home
  • from pre-school to home
  • from primary school to secondary school
  • from secondary school to further studies
  • from secondary school to work.

Each of these life transitions comes with its own challenges and may require appropriate interventions if the child or young person has a brain injury.

Transition is defined as ‘the purposeful planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult oriented health care systems’.41

Some adolescents and young people in brain injury specialist rehabilitation will transition from child-centred to adult oriented healthcare systems.

Ensuring a seamless transfer and transition from children’s to adult healthcare services is necessary to achieve improved health outcomes for young people. Good seamless transfer and transition from children’s to adult healthcare services can lead to:

  • better functional outcomes such as increased adherence, improved self-management and knowledge of their condition and improved wellbeing
  • better access to appropriate health services for young people with a chronic condition
  • improved morbidity and mortality rates
  • a reduction in avoidable hospital admissions.

Everyone involved has a part to play to effectively transition adolescents and young people from child-centred to adult oriented healthcare systems.

  • The young person – by identifying and working on areas of their life where they could gain further independence.
  • Families – by helping them to identify areas that they may need some help with and encouraging them to make decisions by offering choices in a number of areas of their life.
  • Clinicians – by being open, transparent and collaborating. Also being willingly to work together with the young person and gradually increase their responsibility for their decisions
  • Case manager – helping the young person with goal setting, advising on possible services, educating the young person and their family about the transition process and helping the young person become more independent.

Key messages

Some key messages about specialist brain injury rehabilitation emerge from understanding the brain injury, impairments and impacts for each person.

These key messages have implications for brain injury specialist rehabilitation, in particular the principles on which it is based, the core activities that are undertaken and the pathways and settings that are relevant.

  • Each person’s brain injury is unique. Due to the nature of the injury to the brain, each person’s injuries are unique.
  • Each person’s mix of impairments are unique. Each person’s brain injury is unique, therefore each person’s mix of impairments is unique.
  • Each person’s impairments cross multiple domains. The brain injury produces acute, complex and functionally significant abnormality across multiple domains of cerebral function, including cognitive impairment, behavioural and personality change, neurological impairment, etc.
  • The impairments impact on the person’s ability to work on rehabilitation. The impairments often include impacts on the person’s ability to work on rehabilitation.
  • The consequences of brain injury extend beyond the purely clinical and have profound implications for relationships, ability to work, participation in society and overall quality of life. There are profound unique impacts on people’s lives, and the lives of their family and friends, as well as their ability to live in the community. The rehabilitation journey includes working with these impacts.
  • Prior life experience (or lack of), interests and skills have an impact on rehabilitation. The unique life experience, interests and skill sets have profound implications on rehabilitation, as functioning prior to injury is often used to set targets for rehabilitation goals and future participation.
  • The brain injury specialist rehabilitation pathway is from the injury to living in the community. Brain injury specialist rehabilitation goes from acute rehabilitation to social rehabilitation, e.g. school participation, sporting or leisure groups.
  • The impacts of brain injury on children are different from the impacts on adults. The differences are due to the developmental stages a child’s brain moves through from childhood to adulthood; the different life stages a child moves through, such as from preschool to school, primary to secondary school, etc.; and finally the transition from children’s services to adult services for some children.
  • Working with children is different to working with adults. This is because the decision making is made by parents and carers and because family-centred care is critically important in providing healthcare to children with serious medical conditions.
  • Many people with a brain injury have challenging behaviours at some time during rehabilitation.30,31 Challenging behaviours for community-dwelling adults with severe TBI were widespread, having an overall prevalence rate of 54%. The most common challenging behaviours are inappropriate social behaviour, verbal aggression and adynamia (lack of motivation). Many people with severe brain injury display more than one type of challenging behaviour.
  • People aged 15-34 incur most TBI and in the most severe forms. This can have long-term, lifelong social participation consequences. It is especially important to do maximise rehabilitation so as to maximise the benefits for lifelong social participation.
  • The services involved in brain injury specialist rehabilitation include health and hospital services and community services. Specialist brain injury rehabilitation blends the person’s rehabilitation pathway, available services and funding for services with the services crossing health and community services.
  • Specialist brain injury rehabilitation works with multiple sources of funding. Because the rehabilitation pathway goes from hospital to the community there are multiple sources of funds for rehabilitation including health funding, NDIS, worker’s compensation insurance, other insurance.
  • There are multiple sets of principles to be taken into account in brain injury specialist rehabilitation, for example:
    • rehabilitation principles, e.g. Principles to Support Rehabilitation Care
    • disability standards and principles, e.g. National Disability Standards
    • NSW Health values and principles
    • family-centred care principles (for working with children)
    • working with families and carer principles (for working with adults)
    • transition principles for adolescents transitioning to decision making.

Examples in relation to principles

  • While person centred care is a principle in all good practice healthcare and community services, in specialist brain injury rehabilitation it is especially important as it is carrying the added significance that the injury, impairments and impacts are unique to the person, therefore their rehabilitation pathway will also be unique.
  • Due to the nature of the injury, impairments and impacts, families are recognised as important members of the rehabilitation team and can influence rehabilitation and community outcomes when providing emotional, practical and social support. So the principles for brain injury specialist rehabilitation include engaging families and carers.

Example in relation to core activities

  • Case management is a core activity for many clients because of the individual nature of each person’s rehabilitation process and the complexity of weaving this together with services and funding while engaging with the family and carers and dealing with all of the unique individual, family and social impacts.

Example in relation to settings

  • Settings not only include hospitals and other health services but also include transitional living accommodation and community settings, not just living at home but also when the person is out and about in the community.

Examples in relation to pathways

  • People with brain injury may require additional specialist rehabilitation as their circumstances change, as they make life transitions and so on. So pathways must include not only points of entry to specialist rehabilitation, but also points of return to specialist rehabilitation, without having to start at the beginning of the rehabilitation pathway process.
  • Due to the nature of the injury, impairments and impacts, people with brain injury will need services and supports provided concurrently at key points in the continuum of recovery, rehabilitation, adjustment and living with newly acquired disabilities.

Part B: Values, principles pathways and core activities

Values

Values are the beliefs that determine the attitudes and behaviours of the people who deliver rehabilitation services. Collectively these values inform the planning of rehabilitation services and how those services operate. Enacting these values creates an environment and culture where person-centred rehabilitation flourishes. These values are for everyone working in rehabilitation services.

  • Respecting the individual and their context
  • Working within respectful relationships
  • Promoting hopefulness and resilience
  • Fostering self-determination
  • Partnering with families
  • Openness
  • Harnessing the lived experience of disability as a valuable resource
  • Appreciating community needs and priorities for health and rehabilitation
  • Recognising that biopsychosocial factors influence health and functioning.40

Principles

Principles are fundamental truths or propositions that serve as the foundation for a system of belief or behaviour, or for a chain of reasoning.

Principles outlined here are the foundational propositions for effective brain injury specialist rehabilitation.

There are other principles that also create the necessary foundations on which brain injury specialist rehabilitation can sit, for example evidence-based practice and quality improvement. These are embedded in the organisational and state network foundations.

Some of the principles apply to other services as well, e.g. person-centred care, engaging with families and carers, goal directed, however they are listed here because they are particularly relevant to brain injury specialist rehabilitation and have a direct connection to the nature of brain injury and brain injury specialist rehabilitation.

The 17 principles listed below are the propositions that combine to build effective brain injury specialist rehabilitation.

1. Equitable, timely and culturally appropriate access

Equitable, timely and culturally appropriate access to care, services and equipment that people require, as close to where they live as possible.

This principle is important because in NSW, brain injury specialist rehabilitation is a statewide program and not every part of what is required for rehabilitation is in each location. There is therefore a need to balance local decision-making with statewide network needs to achieve this principle. It is also important that local services have relevant collaborative relationships with other parts of the network to ensure the quality of the local services.

2. Person-centred

The person is at the centre of planning and delivery of services.

The outcomes, service delivery and funding pathways are matched with this unique person and their needs.

Services are flexible and respond to changing rehabilitation needs.

The intervention is not dependent on initial injury severity but rather on the nature and degree of disablement and the impact on the person.

This principle requires staff to be able to bring their own person into person-centred work with the client.

3. Facilitative and supportive environments

The environment must be appropriate to meet the cognitive, behavioural and physical needs of people and their learning and rehabilitation needs. This will require adapted hospital wards, transitional environments and real-life environments and situations.

4. Enabling life in and with community

The person is seen as part of a social network which may include family, friends, the neighbourhood and community.

5. Enabling self-management

Enabling self-management maximises the health and wellbeing of the person. Self-management is enabled through a range of mechanisms which may include the provision of education and information, peer support, the development of problem-solving skills, cognitive approaches and coaching.

6. Engaging with and supporting families and carers

Families are recognised as important members of the rehabilitation team and can influence rehabilitation and community outcomes when providing emotional, practical and social support.

Families are provided with education and support to maximise client outcomes and sustain positive family relationships.

7. Family-centred care when working with children with a brain injury 15

Family-centred care is critically important in providing healthcare to children with serious medical conditions.

In the family-centred care of children, the client and their family members are fully involved with healthcare providers to make informed decisions about the healthcare and support services the child and family receive.

8. Engaging and coordinating with the community

The rehabilitation process engages and coordinates across health, disability, education, community and other services.

9. Collaboratively goal directed (to maximise independence)

The rehabilitation process is goal directed. The goals are identified collaboratively with the person at the centre. During rehabilitation improvement is focussed to achieve new goals.

The focus while living in the community is to maintain goals (and prevent deterioration) while achieving new goals as life changes and transitions happen and new needs and goals emerge.

10. Working constructively with challenging behaviours 30,31

Many people with brain injury have challenging behaviours at some time during rehabilitation. The most common challenging behaviours are inappropriate social behaviour, verbal aggression and adynamia (lack of get up and go). Many people with severe brain injury display more than one type of challenging behaviour.

The team require positive behaviour support skills to work constructively with clients with behaviour changes following trauma.

There is access to specialised team members who manage challenging behaviours through social participation.

11. Manage life and service transitions well

It is important that hospital to community, hospital to school, inpatient to ambulatory and child to adult service transitions are well-planned and coordinated.

Life transitions including primary school to secondary school, not working to working, working to studying, single to married, parenting roles, etc. are managed well and allow the person to reconnect with rehabilitation services when necessary.

It is imperative that transitions from children's services to adult services are based on transition principles.

12. Case management 34

Case management is a principle because of the individual nature of each person’s rehabilitation process and the complexity of combining this with services and funding while engaging with the family and carers and dealing with all of the unique individual, family and social impacts.

The intensity of case management changes in response to what is happening in rehabilitation and within the context of the life of the person and their significant others.

Case management is provided in a flexible manner and the duration of intervention is based on continuing need rather than having a pre-determined time-limited program.

13. Individualised multidisciplinary rehabilitation

People and their families and carers receive individualised multidisciplinary rehabilitation that develops their skills and participation.

14. Therapeutic interventions promoting recovery, adaptation, compensation and prevention

Rehabilitation care is optimised when the full range of treatment approaches are considered for every client. This includes therapeutic interventions promoting recovery, adaptation, compensation and prevention.

15. People with brain injury, families and carers are engaged in the improvement of brain injury specialist rehabilitation services

It is particularly important to note the additional effort and skill that is required to ensure that this happens in a brain injury specialist rehabilitation setting.

16. Leadership in brain injury specialist rehabilitation

Leadership is displayed at all levels providing a strategic and operational direction, a sense of team and a commitment to the principles of brain injury specialist rehabilitation.

17. Advocacy for improvement and reform

Brain injury specialist rehabilitation services work with people in health and community settings. The rehabilitation process often involves other services and settings. Services also work within wider policy contexts.

Getting the best outcomes in brain injury specialist rehabilitation involves advocating both in relation to particular services and settings and also within a wider policy and services context.

Injury and personal rehabilitation outcomes pathway

The personal experience of brain injury specialist rehabilitation is unique for each person. Brain injury specialist rehabilitation enables the person to work on achieving goals that are meaningful to them. The person works on the specific areas that are relevant and may include physical difficulty, thinking or cognitive processing, perception, social skills and relationships and goals meaningful to them that enable returning to work, getting about in the community, and adjusting to changes the person may experience following a brain injury.

This pathway is unique for every person with a brain injury.

The goal is for the person to be independent as they possibly can.

To understand the person's recovery and rehabilitation outcomes pathway, it is important to understand:

  • their life before the injury
  • the injury and the impairments it causes
  • the wide impacts caused by the impairments
  • the recovery and rehabilitation pathway for achieving outcomes to address the impairments and impacts, including surviving, relearning skills, returning to school and work and reconnecting with community.

Figure 1: Personal outcomes pathway

Life before the injury

The injury

Getting immediate help

Emergency

Ambulance, emergency department

Surviving

Acute

Neurosurgery, intensive care, inpatient therapy

Re-learning skills

Hospital rehabilitation, transitional living

Brain injury or general rehabilitation unit

Planning

Discharge planning

Assessments, care planning, funding management, case management

Back into the community

Living in community

Support services, case management

Continuing to re-learn

In the community with rehabilitation

Supported accommodation, outpatient services, case management

Living in the community

In community for life

Community services, case management, schools, workplaces

Discharged from the community team

Back at work

Legend

The person
Community services settings
Health services settings

Core activities wrapping around the person

To work with individuals on their personal outcomes pathway the brain injury specialist rehabilitation services wrap core activities around the person through the whole process to enable outcomes to be achieved.

For example, core activities include the person being part of a person-centred team with family and carers and clinicians; therapeutic interventions promoting recovery, adaption, compensation and prevention; and managing challenging behaviours caused by cognitive impairments.

These core activities take place in a variety of settings including hospitals, home and other accommodation places, community locations, schools and workplaces.

Individually and collectively these core activities are key enablers of optimal brain injury specialist rehabilitation.

Figure 3: Core activities wrapping around the person

Core activities wrapping around the person, their family and their carers. Described in detail in the following sections.

  • Person-centred care, engagement with family and enabling self-management
  • Goal directed synergistic teamwork where the team includes the person, family and carers, rehabilitation specialists, clinicians and other services.

While person-centred care is a principle in all good practice healthcare and community services, it is especially important in brain injury specialist rehabilitation as it is carries the added significance that the injury, impairments and impacts are unique to the person and their rehabilitation pathway will also be unique.

Assessment incorporates the discovery of what is important to the person (their values – valued activities, people, places and beliefs) along with the biological, psychological and social aspects of the person. Brain injury specialist rehabilitation must be informed by the person’s values when addressing the biopsychosocial aspects of care. Brain injury specialist rehabilitation is optimised when all of these aspects are addressed within a teaching and learning framework. Services and information provided must be culturally appropriate (including for Aboriginal clients and their extended families).

Families and carers are recognised as important members of the rehabilitation team and can influence rehabilitation and community outcomes when providing emotional, practical and social support.

The rehabilitation team’s teamwork draws on the strengths, skills and expertise of all members of the rehabilitation team by engaging in respectful relationships to maximise the outcomes valued by the person. By working synergistically in this way the team produces something greater than the sum of its parts. The rehabilitation team includes but is not limited to the client, their family and carers and clinicians.

Self-management is enabled through a range of mechanisms which may include the provision of education and information, peer support, the development of problem-solving skills, cognitive approaches and coaching.

Intervention is not dependent on initial injury severity, but rather on the nature and degree of disablement and impact on the person.

Person-centred care requires staff to be able to bring their own person into person-centred work with the client.

Families are provided with education and support to maximise client outcomes and sustain positive family relationships.

The environment can facilitate the process and outcomes of brain injury specialist rehabilitation. The physical, social, and attitudinal aspects of the environment must be considered for this to occur.

The environment must be appropriate to meet the cognitive, behavioural and physical needs of people and their learning and rehabilitation needs. This will require adapted hospital wards, transitional environments and real life environments and situations.

Therapeutic interventions occur as early as possible in the recovery continuum. Rehabilitation provides a multidisciplinary team approach that is driven by the needs of the individual across different health and non-health disciplines.

  • Recovery refers to the process of returning towards a pre-morbid state or better.
  • Adaptation includes changing what or how we do things to complete a task or process successfully, as well as psychosocial adjustment.
  • Compensation refers to using an alternate strategy to achieve the same outcome.
  • Prevention has a key role in minimising the risk of adverse events or poor outcomes.

Specialised rehabilitation programs for people with severe and very severe TBI are provided in different health and non-health environments across the recovery pathway.

  • Managing disorders of consciousness, post coma minimally conscious person
  • Managing challenging behaviours caused by cognitive impairments
  • Managing cognitive impairments impacts in rehabilitation
  • Managing disturbances in mood and emotions
  • Managing PTA
  • Managing suicide risk, sexuality
  • Managing low levels of awareness and responsiveness.

Managing life and service transitions well often includes a period of time where services are provided concurrently to the client. This collaboration enhances handover for continuity of care and support for transition sustainability.

Managing service transitions

  • Acute to in-patient rehabilitation
  • Hospital to transitional living
  • Hospital to home
  • Child to adult services

Managing life transitions well

  • Specialised services tapering to generic services, for example health to disability, specialist medical to general practitioner.
  • Pre-school to school
  • Primary school to secondary school
  • Young person to adult
  • Single to married
  • New parenting roles
  • Education to employment.

Case management is an essential core activity because of the individual nature of each person’s rehabilitation process and the complexity of combining this with services and funding while engaging with family and carers and dealing with all the unique individual, family and social impacts. The timing, intensity and duration is flexible and responsive to individual circumstances.

When working with children services use family-centred care. Every family and child is unique and families know their child better than anyone else, therefore families must be part of the care.

Working with children also involves working with other services and in different settings, e.g. child health networks, schools, the justice system, foster care and guardianship, sibling counselling services and young adult transition services, relevant to the child.

Child protection issues are also considered and addressed as part of family-centred care.

  • Managing icare and other insurance funding
  • Collaboration with private clinicians
  • Collaboration with other health services, e.g. mental health, drug and alcohol.

Systems and processes are in place to ensure all relevant collaborations, partnerships and coordination of services are in place.

Systems and processes are in place to ensure all relevant stakeholders have up-to-date information about brain injury specialist rehabilitation services.

This requires a seamless service network with shared expertise across the network.

This involves staff:

  • participating in statewide brain injury specialist rehabilitation network activities
  • building effective ways of sharing expertise across the network
  • building agreed policies and processes to ensure client access and equity of services across NSW
  • working in collaboration across different networks and service delivery systems.

Settings and services pathways

The brain injury specialist rehabilitation settings pathway goes from the point of injury to the client being back in the community. The pathway includes:

  • acute hospital care and rehabilitation
  • in-patient rehabilitation
  • transitioning to community living
  • living in the community.

This pathway is unique for each person and typically includes health and community services. The pathway is influenced by age at injury, age of client, life stage, e.g. younger – school return; older – work return.

The exact service pathway will vary from person to person and will vary from child to adult services.

This is a pathway through settings and services. The availability of services and settings also impacts on the particular pathway for the individual.

Figure 3: Settings and services pathway

Life before the injury

The injury

Getting immediate help

Emergency

Ambulance, emergency department

Surviving

Acute

Hospital intensive care unit

Re-learning skills

Hospital rehabilitation, transitional living

Brain injury or general rehabilitation unit

Planning

Discharge planning

Assessments, care planning, funding management, case management

Back into the community

Living in community

Support services, case management

Continuing to re-learn

In the community with rehabilitation

Supported accommodation, outpatient services, case management, work continuing

Discharged from the community team

Living in the community

In community for life

Community services, case management, schools, workplaces, therapy services

Legend

The person
Community services settings
Health services settings

For many people, case management is the process that weaves all the threads together through services and settings.

For children, a typical service pathway may also include transition from children’s to adult services. Children’s services also include rehabilitation for schooling and education.

In the community the person could be living independently in their own home, alternatively they could require supports to live in their home and access the community and community services.

A typical setting and services pathway for severe brain injury

  1. The injury event
  2. Emergency services, possibly including retrieval
  3. Hospital acute care, possibly including the intensive care unit and surgery
  4. Hospital rehabilitation
  5. Transitional care, possibly including the Transitional Living Programs
  6. Discharge planning and discharge to the community
  7. Living in the community, often with ongoing rehabilitation and out-patient services
  8. Vocational rehabilitation, where applicable.

Part C: NSW local health districts and speciality networks

NSW Health

Parts C, D, E and F describe what is required in NSW health services to implement brain injury specialist rehabilitation as described in Part B.

NSW Health is responsible for managing and funding health services, including rehabilitation care at public hospitals. Funding should support timely access to quality health services, improve the value of the public investment in hospital care and ensure a sustainable and efficient network of public hospital services.

Local health districts and speciality network services

Brain injury specialist rehabilitation services are provided by LHDs and the Sydney Children’s Hospital Specialty Network.

Rehabilitation services across NSW are supported and enhanced by 13 specialised Brain Injury Rehabilitation Programs (BIRPs) located in 11 different LHDs. An additional two paediatric BIRPs are located in the Sydney Children’s Hospital Specialty Network. A number of other specialised rehabilitation programs also support rehabilitation services for a defined patient population, e.g. cerebral palsy, burn injury, spinal cord injury and stroke.

NSW Health has 15 LHDs and three specialty networks. Each has a governing board with overall responsibility for the strategic direction and operational efficiency of their LHD or specialty network. LHDs and specialty networks are established to operate public hospitals and institutions and provide health services to communities within geographical areas or a defined patient population for specialty networks. BIRPs existed before the current LHD boundaries were devised. The BIRP may provide services that overlap multiple LHDs.

The responsibilities of the LHDs and specialty networks are to:

  • promote, protect and maintain the health of residents in the area
  • conduct and manage public hospitals, health institutions, health services and health support services under its control
  • achieve and maintain adequate standards of patient care and services and ensure the efficient and economic operation of its health services and health support services and use of its resources
  • cooperate with other LHDs and the NSW Ministry of Health in relation to the provision of services
  • make public information and advice concerning public health and health services available to the public within its area.

In NSW Health the LHDs and speciality networks strive to reflect the core values of collaboration, openness, respect and empowerment in our workplace.

Key questions for LHDs and the Sydney Children’s Hospital Specialty Network

  • Are the foundational inputs in place?
  • Are the foundational activities in place?
  • How can local decision-making at the LHD (and speciality network) level and a statewide brain injury specialist rehabilitation network be best achieved?
  • How can an equitable and transparent access to brain injury specialist rehabilitation services be achieved across the whole of NSW?
  • What is in the best interests of the clients across the whole of NSW?

Foundational inputs and activities required

LHDs and the Sydney Children’s Hospital Specialty Network provide foundational inputs and activities essential for the operation of brain injury specialist rehabilitation programs.

Leadership

Leadership at all levels, providing a strategic and operational direction, and commitment to the values and principles of brain injury specialist rehabilitation.

Adequate funding allocation

Allocation of adequate funding for the delivery of brain injury specialist rehabilitation services.

Strong relationships with NDIS, Lifetime care, icare and other insurers

Effective relationships with NDIS, Lifetime Care, icare and other insurers at state and local levels.

Health professionals who respect and understand rehabilitation

The appropriate skill mix of health professionals who understand and can enact the values and principles of brain injury specialist rehabilitation.

Flexible rehabilitation settings

The availability of a wide range of brain injury specialist rehabilitation service settings to enable person-centred brain injury specialist rehabilitation service delivery.

An appropriate environment and equipment

The provision of an appropriate environment and equipment to facilitate brain injury specialist rehabilitation.

Adherence to safety and quality standards

The LHDs and speciality networks adhere to the National Safety and Quality Health Service (NSQHS) Standards.17

Community education

The LHDs and speciality networks provide publicly available information regarding the nature and scope of their brain injury specialist rehabilitation programs.

Equitable and transparent access to rehabilitation programs and settings

There is transparency in decision making regarding access to and utilisation of brain injury specialist rehabilitation services.

Education, training and research

Staff engagement in brain injury specialist rehabilitation education, training and research is valued and facilitated.

Collaboration with key stakeholders

In addition to users of the service and their natural supports, key stakeholders may include referrers into the service and peer support groups, as well as service providers in the next phase of the brain injury specialist rehabilitation continuum.

Collaboration and coordination with key stakeholders for individuals with brain injury

There are mechanisms in place to ensure there is coordination and communication between the various stakeholders in relation to individuals with brain injury.

Part D: Brain injury specialist rehabilitation programs

Brain injury rehabilitation programs (BIRPs) are an essential ingredient in the provision of brain injury specialist rehabilitation. The BIRP is a population-based model with intensive intervention in metropolitan locations and affiliated with trauma hospitals for referrals. Metropolitan teams will refer to the specialised rural BIRP teams closer to where the person lives when ready for transition.

NSW has seven BIRPs located in Sydney and Newcastle metropolitan areas with eight BIRPs in key regional centres. See BIRPs in NSW for details.

Services provided by BIRPs

  • Adult inpatient
  • Adult transitional living program (TLP)
  • Adult community team (and including outpatient services)
  • Adult case management
  • Paediatric sub-acute inpatient
  • Paediatric in-reach to acute
  • Paediatric community team including day hospital
  • Paediatric case management

These services form the NSW Brain Injury Rehabilitation Program. ACI manages the clinical network and engages clinicians and consumers for better health outcomes.

Adult services

Adult BIRPs provide services for clients fulfilling the following primary criteria.

  • The client has suffered a brain injury appropriate for brain injury specialist rehabilitation.
  • The client is aged 16-65 years.
  • The client, or significant others, lives in the area covered by the BIRP or, particularly for adult inpatient services, the area of the state covered by each metropolitan BIRP.

Adult inpatient BIRPs provide consultation and support services when clients are in the acute care setting waiting for transfer, not yet ready for rehabilitation and not in need of specialist inpatient rehabilitation.

The core components in the continuum of services for the adult BIRP network of services are:

  • acute admission
  • inpatient rehabilitation
  • transitional rehabilitation
  • community-based rehabilitation including outpatient rehabilitation
  • discharge.

There are many pathways through these core components. See Part E: Settings and pathways: the continuum of care.

Inpatient rehabilitation

Inpatient rehabilitation in a specialised brain injury rehabilitation unit involves dedicated inpatient wards for specialist rehabilitation for adults who are medically stable and require a high level of care, have had a severe or very severe brain injury and may still be in a state of confusion (post-traumatic amnesia). The units operate 24/7 with doctors, nurses, allied health and support staff in the team. The majority of admissions are received from trauma hospitals, however some trauma hospitals may refer to a non-BIRP rehabilitation service or to the local BIRP service. Each metropolitan BIRP unit may accept people living in other LHDs in need of this level of inpatient hospital-based specialist rehabilitation.

Transitional living programs

Transitional living programs (TLPs) provide contextually based rehabilitation with a community reintegration and social participation focus. TLPs emphasise a client-centred goal planning approach to rehabilitation within a supported therapeutic environment. Intervention is provided in individual and group sessions that incorporates functional skills, as well as more complex training in understanding the impact of brain injury, social communication, memory and even managing behaviour changes that affect performance in different situations. Involved staff provide formal and informal support and feedback about performance. The person is able to learn useful strategies to manage impairments arising from brain injury and apply these skills in home, education, employment and community settings. Family members and carers are engaged in the rehabilitation process to maximise opportunities to support clients to translate skills into daily living.

Most clients are admitted as a continuum of care (in the same BIRP or as a transfer of care from metropolitan to rural BIRP services) in response to changing needs for assessment and rehabilitation to support community participation goals. There are dedicated staff and most TLPs operate on a Monday to Friday basis thereby enabling the person to reconnect with their social network, practice and improve skills in everyday situations, identify barriers to participation and develop new and personally relevant goals.

Community-based rehabilitation

Community-based rehabilitation provides contextually based therapy and case management services. Outpatient medical and multi-disciplinary clinics are provided in metropolitan and some rural areas.

Case management

Case management is integral to the specialist rehabilitation team.

Where a rural BIRP has case management services only. They rely on consultation services to access medical and therapy services for outpatient clinics and the ability to refer clients to a range of other public and private medical and allied health staff, health and community services.

Paediatric services

The core components of the BIRP paediatric network of services are:

  • inpatient rehabilitation (dedicated bed)
  • in-reach to acute and sub-acute services
  • community-based rehabilitation
  • transition to adult services
  • discharge.

There are many pathways through these core components. See Part E: Settings and pathways: the continuum of care.

Inpatient rehabilitation (dedicated bed)

In major children's hospitals there are inpatient wards for specialist rehabilitation for children who are medically stable and require a high level of care, or who have had a severe or very severe brain injury.

The units operate 24/7 with doctors, nurses, allied health and support staff.

In-reach for sub-acute rehabilitation

The core components of the network of BIRP paediatric services consist of In-reach specialised brain injury rehabilitation services. Early notification facilitates the provision of specialised rehabilitation to children with an acquired brain injury (traumatic and non-traumatic) admitted to acute care beds in the three metropolitan paediatric trauma hospitals in NSW. The majority of children are discharged from acute care and receive subacute rehabilitation as an outpatient.

Community-based rehabilitation

Community-based rehabilitation is where therapy is delivered and practiced in everyday environments within the child’s home, school and community. Only one rural LHD has a multidisciplinary paediatric team to provide community-based rehabilitation. Community rehabilitation includes outpatient therapy services.

Outpatient medical and multidisciplinary clinics are provided in metropolitan and some rural areas.

Case management

Case management is integral to the specialist paediatric brain injury rehabilitation team. Rural paediatric BIRP case managers are co-located with adult, rural BIRPs for specialist rehabilitation case management services.

Scope and staffing of brain injury specialist rehabilitation services

BIRP services essential functions

The essential functions for comprehensive brain injury specialist rehabilitation services include:

  • case management
  • brain injury rehabilitation specialist clinics (rehabilitation medicine)
  • neuropsychology
  • occupational therapy
  • physiotherapy or exercise physiology
  • psychology or clinical psychology (with expertise in behaviour therapy)
  • social work
  • speech-language pathology.

Each brain injury rehabilitation service or team must be able to provide or support others to carry out these three essential functions. For example, the adult inpatient rehabilitation service will offer all core activities, whereas a case management only service will work with clients to coordinate providers of the other functions.

These essential functions can be made accessible through a variety of mechanisms including:

  • employment of staff
  • access to staff in other parts of the local health district
  • access to staff in the statewide BIRP network
  • partnerships with private providers
  • purchasing services.

Other staff roles

In addition to staff that provide the essential functions mentioned above, other staff roles may include:

  • brain injury rehabilitation specialist physician or neuropsychiatrist
  • dietitian
  • diversional or play therapist
  • recreational therapist
  • rehabilitation support personnel, including educators, life coaches
  • drug and alcohol clinicians
  • vocational providers
  • mental health clinicians.

The roles actually required in each situation are dependent on the needs of the clients in the brain injury rehabilitation program. Between all the members of the team there must be sufficient skills to carry out all of the core activities. See the full list in Rehabilitation core activities wrapping around the person.

Specialist rehabilitation standards

The section Scope and staffing of brain injury specialist rehabilitation services describes the staffing required, but does not define full-time equivalents for each staff role. This is because of both the diversity of roles and the essential functions being accessible through a variety of mechanisms.

    Establishing fixed staff client ratios is not the most appropriate guide to staffing levels. Rather it is more useful to consider:

    • if there is a sufficient skillset to carry out the core activities between all members of the team
    • and the relevant guides to rehabilitation staff client ratios.

    The following are two examples of guides that may be useful when considering co-location, work flows, and staffing requirements.

    • The Australasian Faculty of Rehabilitation Medicine Standards:
      • Standards for the Provision of Inpatient Adult Rehabilitation Medicine Services in Public and Private Hospitals 20115
      • Standards for the Provision of Paediatric Rehabilitation Medicine Inpatient Services in Public and Private Hospitals 20157
      • Standards for the Provision of Rehabilitation Medicine Services in the Ambulatory Setting 20146
    • The NSW Health Guide to the Role Delineation of Clinical Services provides a framework that describes the minimum support services, workforce and other requirements for clinical services to be delivered safely.46 Rehabilitation services are described in section B18: Rehabilitation Medicine of that guide.

    The Brain Injury Rehabilitation Directorate

    BIRPs provide a NSW population based decentralised service model that operates within and across LHDs.

    Each BIRP, as well as being a local service is also a part of the Brain Injury rehabilitation Directorate (BIRD).

    The BIRD is primarily focused on improving the health and social participation outcomes for children, young people and adults of working age (and their families and carers) with severe brain injury. This is done by working collaboratively with clinicians and others engaged in providing specialist rehabilitation services; encouraging consumers and the broader community to use evidence-based research to reduce unwarranted clinical variation and developing and supporting the implementation of system-wide opportunities.

    The BIRD is led by an executive committee which includes consumers and representatives from metropolitan and rural adult and paediatric brain injury services of the NSW BIRP.

    The network members include representatives from NSW and national consumer organisations, doctors, nurses, allied health clinicians, managers, researchers and other staff working in the NSW BIRP, clinicians in non-BIRP services and private practice and consumers and family members.

    The network includes the paediatric reference group.

    A key ingredient to the success of all of the brain injury rehabilitation services in the network is the sharing of expertise across the network. There are hub and spoke connections between the settings across NSW including clinical management support, professional development and telehealth.

    The Brain Injury Rehabilitation Network provides foundational inputs and activities essential for the operation of brain injury rehabilitation programs.

    • Are the foundational inputs in place?
    • Are the foundational activities in place?
    • How can local decision-making by LHDs and Speciality health Networks (SHN) add value to the statewide network of BIRPs?
    • How can an equitable and transparent access to brain injury specialist rehabilitation services be achieved across the whole of NSW?
    • What is in the best interests of the consumers, family and carers across the whole of NSW?

    Leadership

    Leadership is how well the BIRD engages consumers, clinicians and stakeholders in providing strategic direction, a commitment to the values of brain injury specialist rehabilitation and advocacy for better health care to meet the needs of the identified population.

    Network of services providing seamless care and equitable access

    A network of services providing seamless care and equitable access including formal referral networks for greater metropolitan and regional areas.

    Treatment co-ordination across services

    Treatment co-ordination across services resulting in best practice care for people receiving brain injury specialist rehabilitation.

    Shared expertise across the network

    Shared expertise across the network for both adult and paediatric services.

    Professional development

    To develop evidence-based education resources and provide training opportunities for clinicians.

    Evidence, research and evaluation

    Translating research knowledge into therapy practice.

    Public awareness and information programs on brain injury

    Public awareness and information programs on brain injury.

    Consumer engagement in the design of programs

    Ensuring consumers are engaged when designing the programs.

    Advocacy for improvement in services

    To investigate service needs and influence policies and practices to ensure that service systems are responsive to individual and family needs.

    Part E: Settings and pathways: the continuum of care

    People with a brain injury move through a series of settings as part of their recovery and rehabilitation pathways. The following diagrams provide a summary of the typical settings and pathways in the continuum from injury to living in the community.

    This diagram shows the referral pathways for a person with mild, moderate or severe brain injury. It is described in the following page titled Brain injury to referral to BIRP.

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    Note: Pathways are included for mild, moderate and severe brain injury; brain injury specialist rehabilitation is for those with severe brain injury; some people with mild and moderate injuries will be referred for specialist assessment clinics.

    Brain injury to referral to BIRP

    Pathways

    Mild and moderate brain injury

    • Mild and moderate brain injuries are most likely to be referred to a general practitioner (GP) or the emergency department.
    • People may recover from mild and moderate brain injuries over time.
    • Some people with mild-complicated and moderate brain injuries will have ongoing impairments and impacts significantly affecting their life where consultations, assessments, clinics and rehabilitation are likely to be of benefit. These people are referred for consultation, assessments and advice.
    • Some people with a similar profile of impairments may be referred to the BIRP when the diagnosis of traumatic brain injury is unclear. They may then access services for a limited time to assist with care planning.

    Severe brain injury

    The typical initial settings and pathways for severe brain injury is:

    • emergency department or retrieval and trauma services
    • acute hospital care, including possibly intensive care unit
    • hospital ward.

    Typically the person is considered for rehabilitation either during acute care or when on a ward. For those who meets BIRP admission criteria a referral is initiated.

    Part of Paul's story

    Getting immediate help

    Emergency

    Mountain retrieval, ambulance, local hospital treatment, helicopter transfer to metro hospital

    Surviving

    Acute

    Neurosurgery, intensive care, inpatient therapy

    Paul's complete story

    BIRP to home and BIRP re-entry

    The BIRP will do an initial assessment of needs and options once the referral is accepted. This will determine what the best service to meet the client's need is, and how best this can be delivered with available resources.

    In assessing needs, and the best way to deliver what is needed, some of the considerations will include the following.

    • Medical stability
    • Intensity of interventions
    • Geographic location of person
    • Statewide service settings and locations
    • Client, family and carer wishes
    • What insurance resources are available?
    • When is the right time to admit?

    After an assessment has been made there are many typical setting and pathways available. There are also pathways for the person to re-enter brain injury specialist rehabilitation services as changes happen for the person, e.g. life and service transitions.

    After an assessment has been made there are many typical settings and pathways. Some examples are described here.

    Acute care

    • Patient is admitted to hospital. The stay may include intensive care, general ward and sometimes, general rehabilitation.
    • If eligible (criteria met), the child, young person or adult may be referred for specialist brain injury rehabilitation.
    • The person may be discharged home, or transferred to inpatient brain injury rehabilitation.

    Inpatient brain injury rehabilitation units

    • In the Sydney metropolitan area there are there are three centres where adult patients may be admitted, and two for children and young people though school age, for ongoing specialist inpatient rehabilitation.
    • A feature of support provided for BIRP patients after discharge is the case management model.

    Transitional living programs

    • Some BIRP patients participate in a Transitional Living Program before their discharge home.
    • Other BIRP patients may be admitted to a transitional living unit periodically for assessment or more intensive therapy.

    BIRP Community settings

    • After they are discharged home, some people may be referred to a community team which specialises in brain injury rehabilitation and community resettlement.
    • There are fifteen BIRP services around NSW which provide various aspects of support once the person is living in their community.

      Figure 6: Home and community settings

      This diagram shows a person with brain injury has six settings where rehabilitation takes place, described in the following text.

      When the person is at home there are multiple settings where brain injury specialist rehabilitation takes place that is centred on where the person lives works and plays. Therapy interventions aim to integrate strategies learned into everyday living and assist the client to achieve their life goals.

      Case management is an essential component in brain injury specialist rehabilitation across all of these settings. The client and family remains at the centre of planning and implementation of agreed goals.

      Collaborative discharge planning is a key component of moving from hospital to home. Service coordination and concurrent care across different agencies assists in transition and community resettlement for people with TBI and complex needs.

      At times additional support will be needed and the person can be referred back to the BIRPs. Triggers are key life transitions, key child development stages, changing schools, transition to adult services and managing a crisis.

      Home

      Rehabilitation at home can include attendant carers working with the person on maintaining rehabilitation goals and developing everyday skills at home and in their local community. The definition of home is broad to encompass those who live alone, with family and/or friends, or sharing with others in open and supported accommodation (own property, rental, disability housing, aged care accommodation, etc.)

      School, college, TAFE, university

      Rehabilitation at school can include working with the classroom teachers to facilitate the child’s rehabilitation in the classroom, contributing to lesson plans and discussing strategies to aid learning.

      Workplace

      This includes vocational rehabilitation for return to previous employment, upskilling and seeking new employment. BIRP clinicians may be working with vocational providers, employers and attendant care staff to achieve client goals.

      Outpatient services

      Outpatient rehabilitation services such as circuit class, review clinics, day therapy.

      Other community locations and services

      This involves attendant carers working with the person on developing their skills in other settings, including using public transport, at the gym, shopping, facilitating social relationships and promoting participation in their community.

      In the community for life

      This setting highlights that circumstances and settings change. As changes occur, particularly at times of life transitions (returning to work, school to university) additional rehabilitation and support may be required.

      Introduction

      From the NSW perspective the more common interstate referral pathways for people requiring brain injury specialist rehabilitation are:

      • ACT – NSW
      • Queensland – NSW
      • South Australia – NSW
      • Victoria – NSW.

      Principles

      The principles to apply to these referrals include the following.47

      1. Referrals are made to settings that have the level of care required by the client at the point of referral.
      2. The client should be admitted directly to an inpatient bed and relevant service and not via inappropriate pathways, for example the emergency department unless deterioration in the patient’s condition requires assessment in the emergency department.
      3. Good communication and clinical handover between referring and receiving senior clinicians that involves the patient flow units, resulting in the coordination of timely and safe patient transfer for ongoing care within medically agreed timeframes.
      4. Timely escalation involves immediate escalation with the appropriate service managers for decision making when an issue regarding patient transfer arises which will impact on the patient accessing safe and timely care within the medically agreed timeframe.
      5. Patient flow responsibility means that all facilities have personnel tasked with coordinating patient flow.

      Memorandum of understanding

      Ideally a memorandum of understanding and agreed policy documents on how these principles are to be implemented for each interstate referral pathway.

      Paediatric 44

      For paediatric rehabilitation services linked with one of the three tertiary children’s hospitals the referral process both ways is a medical referral to the respective paediatric rehabilitation service in the relevant state (Victoria = VPRS; Queensland = QPRS).

      Inclusion, exclusion and prioritisation criteria

      People with an acquired brain injury have the right to access rehabilitation services to promote recovery and minimise the impact of disability on their everyday lives. There are challenges, however, that health services are typically faced with in making decisions that balance client need, service capacity, access and geographic location.

      These guidelines provide a clinical consensus structure for considering referrals and admissions to the NSW BIRP. They additionally provide a rationale for the allocation of scarce clinical and support resources for the specific target group for the NSW BIRP. Clear communication to referrers, engaging with other health services, government and non-government organisations and sharing care at key points in the continuum of recovery, rehabilitation and community care enhances individual outcomes.

      Essential criteria

      • Has evidence of a brain injury
      • Aged 16-65 years
      • Client is able to engage in the rehabilitation process
      • Functional, cognitive and psychosocial brain injury rehabilitation goals identified
      • Resides within the geographical service region
      • Complex needs can be addressed within a multidisciplinary team approach.

      Inclusion criteria

      Table 3: Adult inclusion criteria
      PriorityCriteriaDecision

      Priority 1

      Severe* traumatic brain injury (TBI) less than two years ago

      Accept

      Priority 2

      Moderate* TBI less than two years ago

      Acceptance dependent upon service capacity, option for secondary consultation with treating team

      Priority 3

      Severe* TBI longer than two years ago

        Acceptance dependent upon service capacity, option for secondary consultation with treating team, considered on a case-by-case basis if injury was more than five years earlier

        Non-traumatic brain injury (or ABI) that is not progressive nor degenerative

        Accepted into the program at the discretion of the BIRP service manager, taking into account the capacity of the service and the complexity of the client’s needs.

        Option for secondary consultation with treating team

        Complicated mild TBI, defined as: mild TBI Glasgow Coma Scale 14-15 resulting in one of the following:

        • significant structural lesion on CT scan
        • significant acute clinical symptoms
        • significant persisting post-concussion symptoms

        Accepted into the program at the discretion of the BIRP service manager, taking into account the capacity of the service and the complexity of the client’s needs.

        Option for secondary consultation with treating team

        Priority 4

        ABI meets essential criteria and will benefit from a program that requires multidisciplinary allied health inputs and rehabilitation case management

        Considered on case by case basis.

        Option for secondary consultation with treating team

        * Refer to classification of injury severity for TBI

        Exclusion criteria

        • ABI from progressive and degenerative neurological disorders
        • No evidence of TBI
        • Single discipline referrals
        • Age
          • Clients aged over 65 and still in the paid workforce will be considered on a case-by-case basis
          • Clients under 18 years of age may continue to be managed by the paediatric BIRPs while in school and then transition to adult services.

        Mild traumatic brain injury

        Mild TBI will be managed according to NSW Health policy document: PR2012_013 Closed Head Injury in Adults and the associated Institute of Trauma Injury Management guidelines Initial Management of Closed Head Injuries in Adults, edition 2.42,49 In some LHDs clinics have been established to assess and respond to the needs of people with mild TBI with persisting symptoms.

        Referrals not accepted

        When referrals are not accepted, the referring person and the person who is the subject of the referral is informed of the decision. Suggestions as to other service providers will be provided whenever possible.

        Co-morbidities note

        Co-morbidities (mental health, drug and alcohol, medical issues) can impact on a client’s ability to engage in rehabilitation and identify goals. In situations where the co-morbidity is an overriding issue impacting on the ability of the client to engage in the specialised brain injury rehabilitation process, the client is assessed to not be able to engage (have ability to actively participate) and the referral will not be accepted. These referrals will be directed to more appropriate services.

        A referral back to the BIRP can be initiated once the co-morbidity is managed and the client is able to engage in the rehabilitation process. Shared care may be an option for these clients.

        Service access

        Clients are eligible for BIRP service regardless of their living circumstances. People who reside in a residential aged care facility or disability accommodation services may be accepted into the program using the above guidelines, that is the ability to meet the essential criteria, and prioritised in accordance with the above guidelines. A consultative model of care may be offered according to factors such as the level of support available to the client to assist in the implementation of a program and the client’s access to other allied health services, resources and support to achieve goals identified by the client.

        Transitional living programs

        While these guidelines apply to the admission of clients to the Transitional living programs (TLP) setting of care, there will be additional considerations for level of support needs, risk and local organisational guidelines to assist in determining whether a client can be safely accommodated in a centre-based or home-based TLP.

        Inclusion criteria

        To access transitional living programs clients must meet all of the following inclusion criteria.

        • The client has identified rehabilitation goals requiring intensive rehabilitation from two or more allied health disciplines per day for each resident.
        • The client is medically stable to participate in a residential program as determined by a rehabilitation specialist or other medical practitioner.
        • The client is continent or has the capacity to manage with appropriate intervention.
        • The client is motivated to participate in an intensive rehabilitation program.
        • The client is physically independent; the client must be independent or require minimal physical assistance for transfers, mobility and self-care tasks including feeding, grooming and hygiene (maximum support of one staff member only).
        • If wheelchair bound, the client is able to transfer with the assistance of one staff member.
        • Clients have manageable behaviour; clients must be able to be safely managed by a single staff member. They must not exhibit behaviour issues that are unable to be managed within the staffing profile.
        • The client agrees to share house rules and understands consequences arising from rule breaking.
        • The client abstains from drug and alcohol use throughout the duration of the rehabilitation program. Clients sign an alcohol and other drug agreement prior to TLU admission.
        • Self-care equipment has been set-up and trialled by the referring rehabilitation hospital prior to admission. Arrangements have been made by the referrer for the client to access this equipment while on weekend leave and during their TLU admission.
        • Access to weekend accommodation.
        • Confirmed discharge destination.

        Exclusion criteria

        The following criteria excludes people from brain injury specialist rehabilitation services.

        • Clients presenting with ABI from progressive neurological disorder.
        • No evidence of a brain injury.
        • If co-morbidities impact on a client’s ability to meet the essential criteria (i.e. patient does not have the capacity to engage in the rehab process or the client does not have identified goals), the referral will not be accepted. These referrals will be directed to more appropriate services.
        • If a co-morbidity is an overriding issue, the referral will not be accepted.
        • Care and support needs for the TLU program exceeds the ratio of one staff to four clients with the addition of this client.

        Prioritisation

        Additional criteria used in prioritising brain injury specialist rehabilitation clients include the following.

        Client ability to engage: Client has the ability to actively engage in the rehabilitation process.

        Length of time since injury: For example an injury is less than two years ago is a higher priority than an injury > five years ago.

        Severity of injury: Severe is a higher priority than moderate.

        Age: Age >65 years is a lower priority than age <65 years.

        Length of stay: Based on the client’s participation in the program and continuing to achieve goals.

        Inpatient brain injury rehabilitation

        All children from birth to 18 years (still at school) in need of neurorehabilitation are considered.

        Some children may be triaged to specialist disability specific rehabilitation services, such as dedicated services for cerebral palsy and acquired brain injury within a Level 6 paediatric hospital.

        Children admitted for brain injury specialist rehabilitation services have options for receiving decentralised support services closer to home when ready for hospital discharge.

        Eligibility criteria are described in in Table 4: Paediatric rehabilitation eligibility criteria.

        Community BIRP

        In several rural locations these services are co-located with the BIRP adult teams. Metropolitan paediatric BIRP teams initiate referrals internally (inpatient to community) and support transfer of care to rural paediatric BIRPs.

        Ongoing outpatient medical and multidisciplinary clinics are provided in metropolitan and some rural areas.

        Referral from metropolitan (level 6) paediatric hospitals to BIRP rural services is based on eligibility criteria at each BIRP location. Inclusion and exclusion criteria exist to manage client needs within resources.  These are provided in Table 4: Paediatric rehabilitation eligibility criteria.

        Table 4: Paediatric eligibility criteria
        ServiceAgeConditions Other details
        Illawarra Brain Injury Rehabilitation Service
        (Port Kembla)

        5-18 and still attending school

        TBI, non-degenerative ABI after birth

        The brain injury must be the primary diagnosis and the client’s issues should be related to this

        Paediatric Brain Injury Rehabilitation Team (John Hunter Children’s Hospital)

        0-16

        Acquired and TBI

        Medical referral required

        Mid-North Coast Brain Injury Rehabilitation Service (Coffs Harbour and
        Port Macquarie)

        5-18

        TBI

        ABI if capacity available

        Mid-Western Brain Injury Rehabilitation Service (Bathurst)

        5-16

        Prioritise TBI

        ABI (will review on a case-by-case basis)

        Functional, cognitive and psychological rehab goals identified.

        Capacity of family to self-manage care and rehab

        New England Brain Injury Rehabilitation Service (Tamworth)

        0-18

        Prioritise TBI

        ABI (will review on a case-by-case basis)

         
        Southern Area Brain Injury Service (Goulburn)

        From 5 years to leaving school age

        Prioritise TBI

        ABI (will review on a (case-by-case basis)

        Must have identifiable rehab goals, otherwise on a consultancy basis

        South Western Brain Injury Rehabilitation Service (Albury)

        3-18 (school age)

        Primary diagnosis of TBI

        Referral with an acquired brain injury, other than a TBI may be considered at managers discretion

        Resides in the Murrumbidgee LHD

        Compensable clients (such as Transport Accident Commission) will be considered from North East Victoria

        Sydney Children’s Hospital Network (Randwick)

        0-16

        Acquired and TBI

         
        Sydney Children’s Hospital Network (Westmead)

        0-16

        Acquired and TBI

        Western Child Health Network

        Part F: Paying for and providing services in the community

        Multiple sources of funds

        The settings pathways range from acute hospital care to living in the community.

        Brain injury specialist rehabilitation may also be episodic, as new situations and opportunities arise.

        In addition to the funds provided for health services there are multiple sources of funds that the person may potentially be able to access to pay for the services and supports they require for rehabilitation and living independently in the community including disability, motor vehicle and other insurance funds.

        One person can have multiple funding pathways, a person can be eligible for the National Disability Insurance Scheme, be receiving a workers compensation payment and have private disability insurance. Table 5 provides some of the more common funding pathways in NSW.

        Key question

        For each person with a serious brain injury the key question is

        What is the insurance status of the injury event and the person's age at the time of the injury and the implications of this?

        Criteria

        The insurance status and age at the injury event will determine what sources of funds the person is entitled to. Many injury events are covered by insurance, for example:

        • workers compensation
        • insurance policies such as income insurance, disability insurance, public liability insurance
        • motor vehicle accident insurance.

        Part of Paul's story

        Back into the community 2

        Paul does not meet insurance scheme criteria for his accident, so he is treated as a Medicare client and receives Centrelink benefits. He has no permanent disability and therefore does not qualify for NDIS.

        Paul's complete story

        Funding sources

        If the injury event is covered by insurance the person may be entitled to insurance payouts from the relevant insurance.

        Irrespective of these insurance payouts people may be eligible to apply to the NDIS and commonwealth governments aged care programs including the Commonwealth Home Support Program.

        If the age at injury is less than 65 the NDIS applies. If the age at injury is 65 or more the aged care programs apply.

        The payments and services provided through the NDIS and aged care programs may be adjusted where the injury event is specifically insured and there are insurance payouts to the person with the ABI.

        Table 5: Funding pathways for serious brain injury*
        Insurance statusCriteriaAgency Service management
        Uninsured event

        Under 65

        NDIS

        The agencies determine the eligibility, funding and appropriate service providers resulting in services that are managed in one of these ways.

        • Self-managed
        • Combination of self and service provider managed
        • Managed by service provider

        Over 65 or over 50 years for Aboriginal and Torres Strain Islander people

        Aged care

        Insured event or part of event

        Workers compensation

        icare

        Other insurance

        Private insurance company

        Motor vehicle accident

        icare
        Lifetime care

        * Serious brain injury is brain injury that may be appropriate for brain injury specialist rehabilitation

        Funding criteria questions

        To achieve the best outcomes for the person’s rehabilitation, once the insurance status of the injury and age at injury is determined, answers are required for the following questions.

        • What are the agencies involved? For each agency involved:
          • What are the eligibility criteria? Each agency has its own eligibility criteria.
          • What will the funding be based on? Each agency has its own criteria.
          • Who provides the funded services? Each agency has its own criteria.
          • How are services managed? Self-managing and managed by service providers.

        Case management is often part of how these questions are answered in each particular case.

        Agency questions

        Key questions for brain injury specialist rehabilitation services and each funding agency, e.g. NDIS, icare, Aged Care.

        • Where are the boundaries between brain injury specialist rehabilitation and the agency?
        • How are these boundaries managed?
        • What’s required in the best interests of the clients?

        National Disability Insurance Scheme

        People under the age of 65, or over the age of 50 for Aboriginal and Torres Strait Islander people, at the time of a serious TBI are likely to be eligible to apply to the National Disability Insurance Scheme (NDIS).

        The NDIS provides support for Australians with disability, their families and carers.

        As an insurance scheme, the NDIS takes a lifetime approach, investing in people with disability early to improve their outcomes later in life.

        The NDIS ensures that if someone is born with or acquires a permanent and significant disability they will get the support they need.

        The NDIS supports people with disability to build skills and capability so they can participate in the community and employment.

        To be eligible to access the NDIS one must:

        • live in Australia and be an Australian citizen or a permanent resident or hold a Protected Special Category Visa
        • be aged under 65 years, or under 50 for Aboriginal and Torres Strait Islander people, at the time of acquiring the disability
        • usually need support from a person or equipment to do everyday things for themselves because of an impairment or condition that is likely to be permanent
        • need some supports now to reduce their support needs in the future.

        National Government funded aged care services

        People over the age of 65 at the time of a serious TBI are likely to be eligible for Australian Government funded aged care services (and may also be required to make a contribution to their cost).

        There are Australian Government aged care programs to support people living independently in their homes and to provide alternatives where they are unable to continue living independently in their own homes, e.g. aged care home.

        Eligibility criteria includes:

        • older person is usually 65+ or 50+ for Aboriginal and Torres Strait Islander people
        • finding it harder to do the things they used to do.

        Everyone who has an assessment through My Aged Care and is found to need services is eligible to access services that may be partly or fully funded by the Australian Government; and are regulated by the Australian Government.

        NSW statutory insurance - icare

        Workers care

        Some people with a serious TBI are covered by workers compensation insurance. In NSW icare is responsible for workers compensation insurance.

        Lifetime care

        The lifetime care pays for treatment, rehabilitation and care for people who have been severely injured in a motor accident in NSW. This includes people with serious TBI.

        Lifetime care is a no-fault scheme. This means support is provided regardless of who was at fault in the accident, as long as the person meets the eligibility criteria for both their motor accident and their injury.

        Eligibility criteria

        • The person was injured in a motor accident in NSW on or after 1 October 2006 (for children under 16) or on or after 1 October 2007 (for adults).
        • The injury was caused by the motor accident.
        • The type and severity of the motor accident injury meet the injury criteria. Each application is assessed against specific criteria outlined in the Lifetime Care and Support guidelines.61

        Severe injuries that may be eligible for the scheme include spinal cord injury, brain injury, amputations, burns and permanent blindness.

        Private insurers

        Many injury events are covered by private insurers under a range of different kinds of policies including public liability, income protection and disability insurance.

        Brain injury specialist rehabilitation services have to work with private insurers and their lawyers when people with brain injuries are making insurance claims.

        Additional question

        The following is an additional question for brain injury specialist rehabilitation services and private insurers.

        How can the client’s two interests be successfully met, i.e. gaining the maximum appropriate compensation through an insurance payout and maximising their rehabilitation?

        There is sometimes an apparent conflict with maximising rehabilitation progress and reducing compensation payments and reducing rehabilitation outcomes and increasing compensation payments.

        Appendix 1: Glossary

        Activities
        The processes or actions that use inputs to produce the desired outputs, and ultimately outcomes, that is ‘what we do’.
        Brain injury specialist rehabilitation

        Brain injury specialist rehabilitation implies rehabilitation for people who have:

        • an injury to the brain
        • damage to multiple areas of the brain
        • multiple cognitive impairments
        • significant impacts in their life
        • a non-progressive brain injury, e.g. not a degenerative disease
        • ability to actively engage in the rehabilitation process
        • the likelihood that rehabilitation can make a positive difference to their future life.

        Brain injury specialist rehabilitation implies rehabilitation for this specific group of clients who are a subset of people who have experienced an acquired brain injury ABI, of which those with TBI are the core group.

        Client
        The term client is used throughout this document to describe the person receiving the rehabilitation intervention, however resident, client, individual or participant may be substituted in different contexts.
        Family-centred care
        Family-centred care is ‘grounded in collaboration among patients, families, physicians, nurses, and other professionals for the planning, delivery, and evaluation of health care as well as in the education of health care professionals’.15
        Foundational activities40
        Combined with the foundational inputs, foundational activities make rehabilitation service delivery possible.
        Foundational inputs40
        Foundational inputs are the building blocks of the rehabilitation program. These are the preliminary requirements, which need to be in place before implementing a rehabilitation program.
        Glasgow Coma Scale

        The impact of the injury on the brain determines severity and ranges from concussion to persistent vegetative states and is typically classified from mild to very severe, according to the duration of unconsciousness (coma) as measured by the Glasgow Coma Scale.

        Table 6: Glasgow Coma Scale
        Injury severity category Initial Glasgow Coma Scale

        Mild

        12-15

        Moderate

        9-11

        Severe

        3-8

        Very severe

        less than 3

        Impacts
        Impacts are the results of achieving specific outcomes, usually longer term and may take years to achieve. These are the consequences once the person achieves their outcomes and may be desirable or undesirable, anticipated or unanticipated. They are the changes that occur beyond the specific program targets.
        Inputs
        Inputs describe the ‘what’ and ‘who’ is used to do the work. It includes all the resources that contribute to the production and delivery of outputs or what we use to do the work.
        Key stakeholders
        A stakeholder is anyone who can affect or is affected by the program. They may be recipients, providers and internal or external. Key stakeholders are those who can influence the direction or priorities of the program, including participants and program sponsors.
        Outcomes
        Outcomes are the changes that come about through inputs and activities. They may be quantifiable. They are the medium-term results for specific beneficiaries that are the consequence of achieving specific outputs or what we wish to achieve.
        Outputs
        The final products, goods and services produced for delivery. Outputs are usually quantifiable and measurable or what we produce or deliver.
        Post-traumatic amnesia

        Not everyone with a brain injury, however, experiences a loss of consciousness or confusion as the immediate result of a TBI. Some people with a penetrating injury may initially be conscious following the injury. Some people have a hit on the head and get confused without ever losing consciousness. A football player after a heavy tackle may be confused or unsteady on their feet over a few minutes (this would be classified as a mild TBI and often in sport referred to as a concussion).52

        A critical indicator of severity for TBI is the length of post-traumatic amnesia (evidenced by a period during which the person is disorientated, unable to learn, unaware of time, place and person (self). They may display behaviours quite different than usual, being disinhibited, irritable or agitated.

        Table 7: Post-traumatic amnesia categories
        Injury severity category Duration of post-traumatic amnesia

        Mild

        Less than 24 hours

        Moderate

        1-7 days

        Severe

        1-4 weeks

        Very severe

        More than 4 weeks

        The primary group admitted to BIRP have severe or very severe PTA duration. Additional categories had been introduced into the BIRD state data collection for reporting and research purposes. By consensus of the 15 BIRP directors and managers in 2019, it was agreed to retain these categories for clinical purposes.

        Table 8: Additional post-traumatic amnesia categories for BIRD data collection
        Injury severity category Duration of post-traumatic amnesia

        Very severe

        28 days to 3 months

        Extremely severe

        3-6 months

        Chronic amnestic

        More than 6 months

        Principles
        Principles are fundamental truths or propositions that serve as the foundation for a system of belief or behaviour or for a chain of reasoning. Principles here are the foundational propositions for effective brain injury rehabilitation.
        Rehabilitation settings
        These are the care settings or environments in which rehabilitation programs are delivered. The setting in which rehabilitation occurs is principally defined by the person’s changing needs over time and service availability.
        Resources
        Resources refer to both material and human resources.
        Self-efficacy
        An individual’s belief in their capability to succeed in a certain situation or accomplish a task. Self-efficacy influences how people set their health goals.
        Sense of self
        How an individual regards themselves, including an understanding of their qualities, strengths and personal attributes, all of which can be impacted by disability.
        Traumatic brain injury

        Mild

        Mild TBI is also referred to as concussion. Recovery times vary greatly.

        • Some people's symptoms subside within 48 hours. Others have symptoms persisting greater than a couple of weeks and these require careful assessment and reassessment.
        • Some people's symptoms last months (post-concussion syndrome).
        • The majority of people with post-concussion syndrome recover completely in three to six months.
        • Some people do not fully recover and have lifetime impairments.

        Mild traumatic brain injury (complicated)

        Refers to people whose symptoms and impairments from a mild TBI have not resolved within three to six months.

        Severe traumatic brain injury

        Includes severe TBI and very severe TBI unless otherwise noted.

        Values
        Values are the beliefs that determine the attitudes and behaviours of the people who deliver rehabilitation services. Collectively these values inform the planning of rehabilitation services and how those services operate.

        Acronyms

        AcronymTerm
        ABIAcquired Brain Injury
        ACIAgency for Clinical Innovation
        BIRDBrain Injury rehabilitation Directorate, an ACI network
        BIRPThe NSW Brain Injury Rehabilitation Program
        CHNChildren’s Healthcare Network
        GPGeneral Practitioner
        LHDsLocal Health Districts
        PCANSPaediatric care and needs scale
        PTAPost traumatic amnesia
        RPNSWRegional Paediatrics NSW
        NDIS/NDIANational Disability Insurance Scheme/Agency
        TBITraumatic brain injury
        TLPTransitional living program

        Appendix 2. Developing conceptual frameworks and supporting evidence

        This Appendix outlines the process, conceptual frameworks and evidence used to develop this document.

        Project committee

        A project committee was established in June 2018 and continued to June 2019.

        The committee oversighted the process for developing and drafting Understanding Brain Injury Specialist Rehabilitation in NSW and the associated Practice Checklist.

        The committee worked on:

        • reviewing the work to date within the ACI more widely and the Brain Injury Rehabilitation Directorate in particular that was relevant to brain injury rehabilitation
        • developing conceptual frameworks for understanding brain injury specialist rehabilitation in NSW
        • identifying stakeholders for consultation
        • reviewing draft documents.

        Committee members

        • Anita J. Barbara, Manager, New England Brain Injury Rehabilitation Service
          and Rural Spinal Cord Injury Service (Northern Region)
        • Marion Fisher, Outcomes Manager, ACI, Brain Injury Rehabilitation Directorate
        • Karen A. Height, Service Manager HNE Kids Rehab
        • Adeline Hodgkinson, Director Brain Injury Rehabilitation Unit, Liverpool Hospital
        • Nick Rushworth, Executive Officer, Brain Injury Australia
        • Barbara Strettles, ACI Network Manager, Brain Injury Rehabilitation Directorate.

        Conceptual frameworks and evidence

        The process for developing the conceptual frameworks and supporting evidence included:

        • reviewing existing NSW Health and ACI publications
        • developing initial conceptual frameworks
        • consultations with practitioners and iterative redevelopment of conceptual frameworks
        • an agreed conceptual framework
        • a literature search on aspects of the frameworks including specific issues such as values, principles, workforce, case management, challenging behaviours, paediatrics, family-centred care and TBI rehabilitation standards.

        Sources and types of literature and evidence

        The types of literature that were used in developing the conceptual frameworks and identifying relevant evidence.

        • Australian Professional bodies including The Australasian Faculty of Rehabilitation Medicine
        • Australian bodies that set some relevant guidelines or standards such as National Health and Medical Research Council
        • International professional bodies working on setting standards for brain injury rehabilitation, for settings similar to Australia e.g. Ontario Neurotrauma Foundation and the Institut national d’excellence en santé et en services sociaux (INESSS)
        • ACI studies undertaken to address specific issues such as the challenging behaviours projects 30,31
        • Other existing policy documents within NSW Health and health services, e.g. NSW Health (2017) NSW Health guide to the Role Delineation of Clinical Services 50
        • Other literature references including family centred care15
        • Information unique to NSW including the BIRD Network and adult and paediatric eligibility criteria.

        Developing possible frameworks for documentation using core concepts

        The initial conceptual framework for consultations was based on service planning and evaluation concepts including values, principles, service processes, pathways, standards and indicators and was additionally informed by conceptual frameworks being used in the ACI. The initial conceptual framework included the following.

        Part A. Traumatic brain injury (TBI) and rehabilitation

        Part B. Client pathways and brain injury rehabilitation

        Part C. Brain injury rehabilitation: inputs to impacts consistent with values and principles

        Part D. BIRP in NSW pathways, settings, processes and networking

        Part E. Standards and indicators.

        Consultations with practitioners and iterative redevelopment of conceptual frameworks

        Drafts based on this initial framework were discussed face-to-face and in phone consultations with practitioners including:

        • project committee members
        • Royal Rehab
        • Northern Brain Injury Rehabilitation Service and Northern NSW Rural Spinal Cord Injury Service
        • Hunter Brain Injury Service
        • Brain Injury Rehabilitation Service, Westmead Hospital
        • South West Brain Injury Rehabilitation Service
        • BIRD directors and managers meeting.

        Arriving at refined conceptual frameworks

        Following these consultations an overarching conceptual framework was agreed for Understanding Brain Injury Specialist Rehabilitation in NSW and included the structure of the current document.

        Part A: Brain injury and specialist rehabilitation

        Part B: Brain injury specialist rehabilitation values, principles, pathways and core activities

        Part C: NSW local health districts and speciality networks

        Part D: Brain injury rehabilitation programs (BIRPs)

        Part E: Settings and pathways: the continuum of care

        Part F: Paying for and providing services in the community.

        Appendix 3: Paul’s story

        Life before the injury

        The injury

        Paul has a snow skiing accident

        Getting immediate help

        Emergency

        Mountain retrieval, ambulance, local hospital treatment, helicopter transfer to metro hospital

        Surviving

        Acute

        Neurosurgery, intensive care, inpatient therapy

        Re-learning skills

        Inpatient specialised brain injury rehabilitation, case management, TLP with shared accommodation

        Back into the community

        At home

        Rehabilitation training with father and community therapists, case management, GP care

        Continuing treatment

        Acute

        Surgery

        Back into the community 2

        Paul does not meet insurance scheme criteria for his accident, so he is treated as a Medicare client and receives Centrelink benefits. He has no permanent disability and therefore does not qualify for NDIS.

        Continuing to re-learn

        Living skills

        ADL support and rehabilitation training provided by father, case management, return to work program, social work

        Living in the community

        Services and activities

        ADL support provided by father, community team monitoring, case management

        Back at work

        Paul and his friend get jobs in the snowfields, where they will share accommodation. Paul keeps in email contact with his case manager, provides updates and shares concerns. Other friends have started working in the area and Paul is happy.

        Paul is discharged from the community team 20 months post injury

        Legend

        The person
        Community services settings
        Health services settings

        Paul has a snow skiing accident. He is rescued by the mountain retrieval team, and transferred by ambulance to the local hospital. Once stable he is transferred to a metro hospital by helicopter.

        Paul has neurosurgery to remove part of frontal skull for managing brain swelling. Paul’s father is notified. Paul spends time in the ICU. He is transferred to a surgical ward, unconscious and confused for a total of 10 days. He receives therapy to prevent complications and maximise physical recovery.

        He makes a good physical recovery and is admitted to inpatient specialised brain injury rehabilitation ward.

        The multidisciplinary team (occupational therapist, speech pathologist, physiotherapist, social worker, rehabilitation doctor, psychologist and recreation therapist) complete their assessments. Paul and his father meet with the team to identify Paul’s rehabilitation goals and it is decided there needs to be a focus on independent living skills. Paul is transferred to a Transitional Living Program with share house accommodation for five weeks, including weekend leave with his father. He is assigned a case manager, and the multidisciplinary team remains involved. Paul’s father worked with the team to learn what he could do to support Paul.

        When the program is finished, Paul goes to live with his father and attends therapy three days per week. He continues to practice living skills with support from community team therapists and his father. Paul's GP referral is completed.

        Paul returns to hospital for surgery to repair his skull bone. He stays for five days and returns to live with his father and continue community therapy program.

        Paul does not meet insurance scheme criteria for his accident, so he is treated as a Medicare client and receives Centrelink benefit. He has no permanent disability and therefore does not qualify for NDIS.

        Paul continues to recover, living with his father and using his support to manage living skills.

        Paul’s rehabilitation plan transitions to support for returning to work. He starts a return to work program, which includes physical and mental endurance, memory strategies, planning and organising support.

        Paul and his father attend a rehabilitation clinic every three months. Paul’s neurosurgeon has given him medical clearance. His physical endurance has improved. His memory difficulties are minimised by using phone reminders and calendar notes.

        Nine months post injury, Paul reaches out to friends and workmates for share accommodation and to find work at the snow fields. Paul gets a job in the snowfields in Japan. His friend also gets a job and they will share accommodation. Paul, his father and his friend meet with the therapy team and discuss how this will work.

        Paul goes to Japan. He keeps in email contact with his case manager, provides updates and shares concerns. His friend is happy with how it is all going. Other friends have started working in Japan snowfields and Paul is happy.

        Paul is discharged from the community team 20 months post injury.

        Bibliography

        Disability and rehabilitation - World Health Organization

        The World Health Organization provides useful frameworks:

        • Disability and rehabilitation 60
        • Classification of functioning. 59

        Rehabilitation model of care and principles - NSW

        From 2013 to 2019 NSW Health and the Agency for Clinical innovation undertook a process to describe a rehabilitation model of care and associated principles. Key documents include:

        • Rehabilitation Redesign Project 39
        • Rehabilitation Implementation Toolkit 32
        • Principles to Support Rehabilitation Care. 40

        Paediatric rehabilitation model of care - NSW

        From 2016 to 2019 work was done to describe how child and family centred rehabilitation is meant to work in NSW. The key documents are:

        • Paediatric Rehabilitation: Model of Care Diagnostic Project 28
        • NSW Paediatric Rehabilitation Model of Care. 50

        Brain injury rehabilitation model of care - NSW

        From 2016 to 2020 the Agency for Clinical Innovation, in particular the Brain Injury Rehabilitation Directorate undertook a process to describe the brain injury rehabilitation model of care. A key document is:

        • Diagnostic Report, Model of Care NSW Brain Injury Rehabilitation Program.36

        Brain injury rehabilitation - International standards and evidence

        Organisations in the United Kingdom, Canada, Scotland, United States and New Zealand have undertaken extensive literature and other evidence reviews and established standards, including:

        • American Occupational Therapy Association (AOTA) 4
        • INCOG (International team of researchers and clinicians) 19
        • Institut National d’Excellence en Santé et en Services Sociaux (INESSS-ONF) 20
        • New Zealand Guidelines Group (NZGG) 27
        • Ontario Neurotrauma Foundation (ONF) 57
        • Royal College of Physicians (RCP) 51
        • Scottish Intercollegiate Guidelines Network (SIGN).53

        Brain injury rehabilitation specific issues – NSW

        From 2010 to 2020 the Agency for Clinical Innovation, in particular the Brain Injury Rehabilitation Directorate, have undertaken work to better understand specific issues as they relate to brain injury rehabilitation, including:

        • Challenging behaviours project 30, 31
        • Case management 34
        • Consumer engagement 33
        • Rural and remote 29
        • Transitional living 37
        • Outcomes 17
        • Community rehabilitation team.18, 55

        Family centred care

        There is an extensive literature on family centred care. A key documents is:

        • Policy statement on family centred care.23

        Economic impact of brain injury

        There are studies reviewing the economic impact of brain injury.1

        NSW Health policy

        NSW Health has a policies that directly relate to brain injury rehabilitation including:

        • Principles for Transition of Young People from Paediatric to Adult Health Care 41
        • Interstate transfer guidelines 47
        • Guide to the Role delineation of Clinical Services 46
        • Rehabilitation services 5, 6, 7
        • Adult trauma management of closed head injury 42, 49
        • Infants and children: acute management of head injury.48

        Australian professional and standard setting bodies

        Australian professional and standard setting bodies have done work that has let to relevant standards for use in brain injury rehabilitation, including:

        • Australian Commission on Safety and Quality in Health Care 8, 9, 10
        • Australian Council on Healthcare Standards 11
        • Australian Institute of Sport and Australian Medical Association 12
        • Australasian Faculty of Rehabilitation Medicine 5, 6, 7
        • National Health and Medical Research Council.24, 25

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        © State of New South Wales (Agency for Clinical Innovation).

        Creative Commons Attribution-ShareAlike 4.0 International License. For current information go to: aci.health.nsw.gov.au The ACI logo and third party tables are excluded from the Creative Commons licence and may only be used with express permission.

        Publication date 2021-08-03.

        Accessed from https://aci.health.nsw.gov.au/publications/brain-injury-rehab

        Accessed on 2022-12-09.

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