- a) Introduction
- 0. Introduction
- 1. Working together promoting independence
- 2 . Using this kit
- b) Issues, goals, action
- 3. Identifying issues W
- 4. Setting goals W
- 5. Making goals happen W
- 6. Monitoring progress W
- c) Strategies Myself and my relationships
- 7. My behaviour's changed W
- 8. Thinking
- 9. Relationships W
- Managing memory, money and time
- 11. Remembering information and messages
- 12. Finances and handling money W
- 13. Managing time W
- Household tasks
- 14. Food and shopping W
- 15. Food and meals W
- 16. House keeping
- 17. Laundry
- Getting around
- 18. Public transport W
- 19. Accessing the community
- Life tasks
- 20. Self care
- 21. Fitness
- 22. Leisure
- 23. Employment
- 24. Continue learning
- 25. Health and well-being
- 26. Emergencies
1. Working together promoting independence: roles
This kit is designed to help people with TBI's, their families, support workers and rehabilitation specialists to work together to promote the independence of the people with the TBI.
It is useful if everyone working together understands a) what rehabilitation is and b) each others roles in particular:
- The role of the person with the TBI - the individual
- The role of the rehabilitation team and its members
- The role of the family
- The role of the support worker.
When a person has an injury or an accident they may hurt themselves in some way. Depending upon the severity of their injury they may require hospitalisation or medical assistance. This medical assistance is known as acute intervention.
When a person is medically stable they may go home or have to remain in a different part of the same hospital or even go to a different hospital to help them to continue to recover. This process of recovery is known as rehabilitation.
Rehabilitation aims to facilitate ongoing recovery. Rehabilitation enables a person to become as independent as they possibly can. The goal is for the individual to return to their previous abilities, activities and way of life as much as they possibly can. It means enabling the individual to live with their remaining abilities and develop strategies to enable them to compensate and overcome new difficulties.
The process of rehabilitation experienced by each individual is unique. Just as a brain injury is unique, the type of rehabilitation program the individual is engaged in is uniquely tailored to target individual needs. Rehabilitation addresses specific areas of physical difficulty, thinking or cognitive processing, perception, social skills and relationships. It also addresses broader areas of returning to work, getting about in the community, and adjusting to changes an individual may experience following a brain injury.
Rehabilitation is ongoing . When a person has a severe injury or accident which results in a brain injury, rehabilitation may take a long time. It continues after the person has left hospital and has returned home. It may include attending the hospital for further outpatient therapy or it may involve therapists visiting and working with the individual in their own home.
\When a person is first discharged from hospital it may be necessary for the person to be seen frequently by health professionals. Over time this frequency will decrease. This does not mean that the process of making gains has finished, but it will slow over time.
Rehabilitation changes the focus from the hospital with individual and group therapy, to assistance with overcoming disability in all aspects of life.
Bursts of individual therapy or specific programs may be utilised at various times after initial hospital discharge to take advantage of changes and maximise recovery.
Rehabilitation is not something that is done to the individual, rather with the individual.
Rehabilitation is based on working with the individual to achieve things that matter to them. Therefore, for it to be successful, the individual needs to participate actively in the rehabilitation process. The type of rehabilitation offered needs to be meaningful and relevant to the person. This means the individual, their culture, pre-injury lifestyle, family and environment are critical to ensuring the success of rehabilitation.
The individual's abilities will determine how the individual is able to participate in the rehabilitation process. The individual is a valued member of the team. Their wishes and opinions enable the rehabilitation team to develop individual treatment plans. The individual is central to all decisions being made and has a responsibility to express their desires for their rehabilitation.
The responsibility for participation in the program is with the individual. It is important to recognise this, as neither the rehabilitation team, family or friends can force the individual to participate. When an individual is forced into participating the individual will not make gains as their attitude will prevent them from getting the most out of the program. Their behaviour can also become worse and this is frequently taken out on others. In such cases a short break from an intensive program or changing the program in some way can be a solution.
The individual has the responsibility of sharing with others how the program is helping them, what difficulties they are experiencing, if they like the program and how it could be changed to make it better.
They are also responsible for working with the people who are working with them.
The Rehabilitation Team may include a combination of Rehabilitation Specialists, Case Managers, Nurses, Physiotherapists, Social Workers, Occupational Therapists, Neuropsychologists, Clinical Psychologists, Recreation Officers, Speech Pathologists and Residential Care Workers.
Rehabilitation Specialists monitor medical issues following the injury. They usually follow the individual through hospital and then follow them up through outpatient clinic appointments. They are able to provide legal reports.
Nurses work closely with the individual in hospital. They get to know the individual very well and often express individual concerns to the rest of the Team. The nurses work to maintain the wellbeing of the individual in the hospital setting. Community nurses generally have specific tasks. For example, changing dressings and giving injections. They liaise with the local doctor.
Case Managers become involved with the individual when they have left hospital. They develop and oversee the rehabilitation plans and are frequently the primary contact person with whom the individual can raise issues, express concerns and ask questions for further information.
Physiotherapists work with the individual to maximise physical functioning and maintain joint integrity and muscle length. The individual usually spends time working with the physiotherapist in the gymnasium, at home and in the community. Physiotherapists may be involved in the rehabilitation process when the individual is in hospital and in the community.
Social Workers also work with the individual's family and help them to adjust to the individual's injury. They can be involved in legal and financial issues as well as injury claims and insurance. Social workers work with individuals and their families on a range of issues in the hospital and after discharge. They offer support and counselling to adjust to the many changes that can often arise from having had a brain injury. Social workers liaise with community services, government departments and other organisations such as insurance companies and solicitors to ensure the individual is informed of what is going on and their rights are protected.
Occupational Therapists work with the individual to get them back to doing everyday activities. Occupational therapists look at what the individual was doing prior to their injury and what they will need to do when they leave hospital. The occupational therapist then works with the individual on regaining competence in these activities. It may be necessary for the individual to use adaptive equipment or make modifications to the home or work place to maximise the individual's independence. The occupational therapist will prescribe this equipment or environmental change. The occupational therapist will work with the individual in the hospital, home, community, workplace, school or educational institution and leisure environments.
Neuropsychologists use a number of tests to identify where the individual is having difficulty with their brain function. Areas neuropsychologists examine include attention, memory, speed of information processing, flexibility in thinking, manipulation of information, abstract thinking and general knowledge. This information is fed back to the Team and provides information regarding the extent and severity of the injury and areas where these difficulties may affect daily functioning.
Clinical Psychologists work with the individual on specific areas that limit their ability to get on with everyday life. This may include counselling, developing behaviour management and support programs where the clinical psychologist works with the individual on specific areas of their behaviour. Different areas may be stress management, sleep disturbances, anxiety, depression and anger management.
Recreation Officers work with the individual to identify leisure and recreation options the individual can do in both their home and community. The recreation officer liaises with educational institutions and community facilities to find activities that are meaningful to the individual and meet their individual needs.
Speech pathologists initially work in hospitals to recommend advice on eating, including swallowing and appropriate food consistencies. As recovery occurs they work with the individual on areas of language, expressing themselves, understanding information they are receiving and social skills. Speech pathologists also work with the individual beyond the hospital in the community, in individual and group situations.
Residential Care Staff work with individuals in the transitional living units. In the transitional living unit residential care staff are responsible for ensuring the safety of those in the house and the facilitation of the residential rehabilitation program or residential program with a leisure focus. Other carers or support workers may replace residential care staff when they return home or are in permanent independent housing.
The rehabilitation team's primary responsibility is to the individual who has the brain injury. They are working with this individual to achieve his or her goals. The extent the brain injury has limited that person's ability to make informed decisions is determined by the Team through the assessments and observations conducted. If the Team feels the individual is not able to understand the complexities of the information being given in order for a decision to be made, they will approach another who is perceived to make decisions that are in the best interest of the person who has the brain injury. This may be a family member or a close friend. If it appears there is conflict or discrepancies in what different people feel is most appropriate for that person, the rehabilitation team may consider making an application for an independent decision-making body. An application may be made to the Guardianship Tribunal. A substitute decision-maker may be appointed in areas of accommodation, medical and dental management, finances and service utilisation. If no family person is identified as suitable then a Public Guardian or Estate Manager can be appointed.
The rehabilitation team works holistically with the individual. They can recommend programs and provide therapy, support and encouragement to the individual. They cannot make the individual participate. Rehabilitation does not cause recovery, it enhances recovery.
When an individual has a brain injury it doesn't just impact on the individual.
Everybody in the nuclear and extended family unit experiences the change and also needs to make adjustments.
Typically, a brain injury impacts upon the individual, his family, friends and society in general. Changes may occur in the individual's different roles - at home, study, leisure or work. This may change relationships within the family and cause loss of friendship and support.
Reconciling issues of denial that the accident has happened and that there will most probably be differing levels of permanent change and ongoing disability takes time. Each person's response is individual and adjustment to losing the person they used to be is personally confronting. How family members adjust to such issues has ramifications for the individual's rehabilitation and life as a member of the family.
When the person is in hospital the family spend much time with the individual. It is important the person has time with their family, however, it is also important the individual participates in the rehabilitation program. The person with a brain injury needs to be actively involved in rehabilitation and the performance of everyday activities as soon as possible. The aim of rehabilitation is to maximise a person's abilities and their independence. This can only be achieved through encouraging their participation, supporting them as they come against barriers and difficulties, and providing them with every opportunity.
Most rehabilitation hospitals can provide families with a copy of the individual's rehabilitation timetable. To enable the person to benefit most from their therapy time it is important to provide them with space to improve and participate alone. This will increase their self-confidence and independence. It is common for an individual to become dependent upon their family if they are not encouraged to do things for themselves. Dependence in hospital establishes behaviours that can be difficult to change when the person returns to life beyond the hospital.
All members of the rehabilitation team are willing to provide information about how the family member is progressing and how the family can contribute to maximising their gains.
If the person who has the brain injury is a young family member who still lives with parents or is in a supportive relationship, the person with the brain injury frequently returns to the family home. This transition from hospital is difficult for the individual with the brain injury and the family unit.
It is another period of adjustment for all involved. It can be a time where the extent of disabilities is realised as the individual is now home and is not able to function as they did previously. Prior to the individual returning home a home program may have been developed. You will have received information on how the individual's brain injury has affected their daily functioning and what this will possibly mean when they return home. It is important for families to ask the rehabilitation team for strategies that can be used at home to help the individual with the brain injury overcome and compensate for their injury. Toolkit A: Promoting Independence provides specific strategies that may be relevant to the individual with the brain injury that can be tried in relation to various activities and issues.
It is not as easy as it sounds to be a family member and also enable the individual to continue their rehabilitation at home. When family members are using strategies to increase the individual's independence, the relationship shared is changed. This can be confusing for the individual and difficult for the family member to maintain. Confusing for the individual because the family member may have to be more directive in getting activities done. This may increase the individual's frustration at themselves, which then may be reflected negatively toward the family. It may be difficult to persevere with strategies that in the long run will enable improvements due to the grief it can cause in the short term.
Although it may sometimes be easier for the family to do some activities, it is important to remember that it doesn't help the individual. If it was an activity they used to perform and the family completes it because it is quicker for them to do so, it changes the role that person now has in the home. This can impact upon the individual's self esteem. Inactivity is not good. Encouragement to take responsibility and make decisions is positive and gives a person control over different aspects of their lives. It is important this opportunity is not inadvertently removed from the individual with a brain injury, no matter how good intentions maybe.
It is recognised that life continues and the responsibilities and activities family members were involved in prior to the family member sustaining a brain injury, go on. It is sometimes difficult and frequently defeating to recognise how hard it is to continue life without support. If there are specific rehabilitation activities that are programmed into the day and the family is not able to work them into their routine it is important to talk to the rehabilitation team.
Support workers can frequently aid the family in the implementation of the rehabilitation programs and provide respite or time out from the individual with a brain injury. There is no need for a family to feel guilty about wanting time out. The stress and energy required to live with a person who has a brain injury is known to be high. Time out and being able to maintain some of their own previous lifestyle is positive. This will ensure the family's own health and wellbeing. This is critical if the family anticipates being able to provide long term care for the individual who has the brain injury.
The rights of family members
The rights of the family are the same as those of any other person. Family members have the right to be treated with respect, dignity and not placed at risk. Depending upon how the brain injury has impacted upon your family member's functioning these basic rights may at times be threatened. It is important to remember the safety of the family and be realistic about the ability of the family to manage in sometimes trying circumstances.
The expectations and responsibilities of family members in the rehabilitation process
The impact family can have on the success of the rehabilitation process cannot be underestimated. When the individual with a brain injury returns home, the family is the primary contact for that individual. Providing opportunity for ongoing rehabilitation is frequently expected of family. This may include taking the individual with a brain injury to appointments or implementing a home program.
It is the family's responsibility to share experiences honestly with the rehabilitation team. This feedback may be critical and allow further refinement of the rehabilitation program.
It is the family's responsibility to inform the rehabilitation team about the reality of the home situation and the ability of the family to manage. This allows the team to know how the family unit is coping. This will enable the rehabilitation team to develop realistic goals with the family member in collaboration with the family. It will also allow the rehabilitation team to identify resources that may assist a family in providing support for the family member.
As previously stated, rehabilitation aims to maximise an individual's abilities and independence. If this rehabilitation philosophy is different to family, cultural and religious beliefs it is important to inform the rehabilitation team. This will enable the rehabilitation team to develop culturally sensitive programs and continue to support the family as they work with the family member.
The primary responsibility of the rehabilitation team continues to be to the individual who has sustained the brain injury. However, recognition of the family's importance to the rehabilitation process and the individual's ongoing development means their role in the planning, development, implementation and evaluation of the rehabilitation program is considered crucial and necessary.
When the individual has left hospital they may work with people in their home and community. These people may be paid or voluntary. They are known as support workers, attendant carers and personal care assistants. For this booklet the term support worker is used synonymously. The intensity of rehabilitation may decrease over time, however the individual may continue to need support workers.
Support worker responsibilities
Support workers are directly responsible to their employer. This may be a private Attendant Carer Agency or it may be a government service such as Community Options or an accommodation support service such as Wareemba Community Living.
Support workers are also responsible to the Rehabilitation Provider who has developed the rehabilitation program with the individual. This involvement may reduce over time.
Support workers are responsible to the person with whom they are working. This involves respecting the individual and their right to make informed decisions and their right to make mistakes.
Support workers are responsible for ensuring the rehabilitation program is implemented as planned. Support workers work according to the program, monitoring its implementation and the individual's reactions to it. Support workers are not responsible for modifying the program. They are responsible for feeding this information back to the rehabilitation provider and their employer. If the individual wants information on specific rehabilitation goals, this request is to be referred to the employer or the rehabilitation provider. It is not the role of the support worker to provide this information or information that conflicts with agreed goals and therapy direction.
The brief of the support worker should be documented in the rehabilitation program or service provider's plan, for example, an individualised plan. It is important the information the individual receives is correct the first time. This prevents the individual being confused and anxious.
Support workers are responsible for maintaining a professional working relationship with the individual. This involves arriving and leaving as determined by the program and providing only the service stated in the program. Support workers develop a close relationship working with the individual in their own home or Transitional Living Unit and frequently on a one to one basis. It must be remembered this is a working relationship that may allow the support worker to work informally with the individual, however it is work. This working relationship can be confused with friendship. It must be remembered support workers are being paid. They have a specific brief to work within and are not the individual's keeper. It is important to maintain this working relationship as workers change. They may be moved to work with another person or the individual may improve and the hours may be decreased.
The Expectations of support workers
Support workers are expected to treat the individual with respect and dignity; to provide them with alternatives and information that will allow them to make an informed decision. It must be remembered the decisions they make may not be the decisions a support worker would make, but that does not make it wrong.
Support workers are expected to remain objective in the service they provide. If the individual becomes emotional or expresses anger or frustration it is appropriate to listen and use reflective listening to demonstrate empathy. Empathy is not sympathy. Empathy is where support workers demonstrate an awareness or understanding of what the person is experiencing, but do not become emotionally involved or feel pity. It is not expected the support worker will become emotionally involved and champion the individual's concerns. It is expected this information will be fed back to the rehabilitation provider or employer so action is planned and taken.
Support workers have the privilege of working with individuals to help them achieve their goals and get on with life. Individuals who have a brain injury are often vulnerable and their social networks diminished. Some individuals perceive support workers as more a friend than a worker. The information and opinion support workers provide, may influence the decision an individual will choose to make. It is important to remember support workers work with individuals within the framework of their employment. Support workers must remain objective both in word and action.
The rights of support workers
Support workers have the same rights as the individual. To be treated with respect, dignity and not placed at risk. Their privacy should be respected. Limiting how much personal information is shared with the client will enable support workers to maintain a working relationship.
They also have the right to be informed about what the program aims to achieve, how to implement it, who to contact if there is difficulty and information about the person they are working with. This information will enable them to implement the program and develop a working relationship with the individual.