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Family Guide to Low Cost Rehabilitation - Fact Sheet
Your family member is discharged from rehabilitation and you are ready to try anything which might make things better. The steps listed below may serve as a guide if you wish to develop a programme using free or low-cost resources which exist in your community.
Step 1: Obtain Detailed Objective Information
The injured individual: Since research has clearly demonstrated that the most disabling consequences of brain injury are  Cognitive and behavioural, information about the individual’s current level of functioning in these areas is essential if a realistic programme is to be developed. You need specific information on such things as how much can be learnt, what is the best way to learn, what activities are most likely to present problems, what limitations there may be perceptually, and how you can set things up to maximise abilities. Your rehabilitation programme must also take physical limitations into account. In addition to general information about the individual’s medical status and physical abilities, thorough evaluation of both visual and auditory systems should be completed. Management of medical needs must be an integral part of the rehabilitation programme. Adaptive equipment such as a wheelchair, braces, and communication devices, must be appropriate to the individual’s current needs and in good repair.
Your support system: Family members must objectively decide how much time, money and emotional energy they will be able to commit and how long they will be able to do so. This includes such factors as who will provide transportation to activities, supervision in both the home and the community, and what materials will be needed. An organised programme requires the effort of more than one individual unless it is undertaken in extremely small and manageable steps.
Community resources: This is definitely the time to “let your fingers do the walking.” A wide range of community services, many of which are paid for by your tax dollars, are available in most communities and are appropriate for individuals who have sustained brain injuries. Most of these agencies do not advertise; many are not aware of the special needs of those who sustain brain injuries and how their agency’s services might be utilised by this population. Contact your state brain injury association for a list of community resources.
Step 2: Develop and Implement Your Programme
Now you are ready to set specific rehabilitation goals. Since you are designing your own programme, you are free to include only those activities which you feel will be helpful to the injured individual and for which you have the time, resources and energy to follow through.
Certain problems occur often enough that the broad areas which must be addressed can be identified even though specific activities must be decided by family members. Among these common areas, and in chronological order of importance, are:
Survival skills goals: Those activities which have the highest survival value (daily routines such as showering, grooming, toileting, dressing, sleeping and eating) should receive concentrated attention in the initial phase. Goals should address the mechanics of completing the task as well as the amount of time required. Goals in this area have been accomplished when the individual is able to awaken on his own, independently complete his morning hygiene routine, and prepare and clean up after eating; he should be dressed as if going out in the community each day.
Basic cognitive goals:
Individuals who have sustained brain injuries are frequently extremely distractible and have limited ability to attend to and concentrate on tasks. Until attention and concentration are improved, community-based activities may be problematic.
Initial cognitive retraining activities should probably be conducted within the home setting. Appropriate activities might include working on craft projects from books in the public library, playing simple board or card games, or playing simple video games. Since pre-injury information and skills are frequently relatively intact, the individual may be able to play games which were learned pre-injury, such as checkers or poker, without having to learn new rules. At this stage, the ability to learn is not being addressed, only the ability to attend and concentrate.
While such activities may initially require a quiet distraction-free environment, the amount and type of distracters should be increased as attention and concentration improve. The amount of consecutive time devoted to such activities should also be gradually increased until the individual is able to continue at the task for at least 30 minutes.
Basic behavioural goals:
When the individual is able, at least at minimal levels, to attend and concentrate, to learn, and to remember, behavioural contracts can be used to reduce the frequency and severity of specific targeted behaviour problems such as verbal aggression, Perseveration, or poor social skills.
Information about behaviour management strategies can be obtained from your brain injury association. It is critical to ensure that behavioural goals are not all negative, i.e. designed to stop behaviours. You must balance behaviours to be stopped with those you wish to see started so that the individual is not left with a behaviour void. Your behaviour management programme should utilise appropriate rewards to encourage the individual to behave in more positive ways.
At this point in time (if you are not already doing so) you should begin to give honest, objective feedback to the injured individual on specific maladaptive behaviours and your reactions to them. Although such direct oral feedback is not customarily given in most social settings, the injured individual may not understand why he fails to make friends unless he is provided with such information.
Social/recreational goals:
One of the most frequent complaints voiced by individuals who have acquired a brain injury is the lack of friends and social opportunities. The reasons for this are varied but physical limitations, poor behaviour control, decreased cognitive abilities and poor social skills are usually major culprits. In many cases, the individual lacks insight into the nature, range, severity or even the existence of deficits following the brain injury and seems generally unable or unwilling to modify his behaviour even in the face of interpersonal cues which are not at all subtle. Once the individual’s behaviour is under adequate control in the home setting, community recreation activities can be introduced in the rehabilitation programme. Your local brain injury association should have a list of recreation programmes set up for people with disabilities. These resources should be fully utilised before attempting to mainstream in the community.
Academic goals:
Some individuals who have acquired a brain injury may be able to successfully enrol in academic programmes once their basic cognitive and behavioural deficits have been remediated or despite remaining deficits. The line between rehabilitation and education begins to blur at this point, especially when the courses or subject areas had not been attempted prior to the injury.
If you are considering including a formal academic component, you should determine whether the individual can keep track of class times, take notes, study for an examination, and learn the information presented without having to simultaneously deal with problems such as transportation to the campus, locating a specific classroom or dealing with distractions in the classroom. If a video recorder is available, you may tape the class so each lecture can be replayed as many times as needed or shown at more convenient times than initially scheduled.
Vocational goals:
Some individuals who have sustained brain injuries may recover sufficiently to return to either sheltered or competitive employment; others will be able to contribute to their communities in volunteer positions. Many individuals will be unable to pursue vocational goals because their salary would not compensate for government or private sources of disability income and/or benefits. Individuals who are not eligible for benefits may have to attempt to return to work if they wish to live above bare subsistence levels. If and when re-employment is a realistic goal, the Commonwealth Rehabilitation Service can assist in exploring vocational options and getting back into the work force.
Step 3: Monitor Progress and Update as Needed
As the programme progresses, you should find that the individual’s cognitive and physical endurance, performance speed, and skills are steadily improving while the demands on your time are steadily decreasing. You must be able to fade yourself from the picture at appropriate times, even when you are not completely sure the individual can perform the activity without your help. As the individual’s skills improve, you must make certain that your expectations rise so they are commensurate with his new abilities; when indicated, set goals at higher levels. The myth of the “plateau,” which suggests that individuals who sustain brain injuries reach a certain point in their recovery and then stop making progress despite the best rehabilitation efforts, must also be challenged as your programme progresses. When progress appears to be levelling off, it may be useful to think of that time as a period of consolidation of newly-acquired skills, a time for the repeated practice which is required to integrate the new information and skills with the old until they become as routine as possible.
At some point in time the injured individual and/or family members decide that they no longer wish to pursue rehabilitation. On rare occasions this occurs because all goals have been met; usually other factors such as extremely slow progress, the wish to pursue other activities, or burnout account for this decision. The fact that a structured rehabilitation programme is no longer in place does not necessarily mean that the injured individual will stop acquiring or refining skills or that deterioration will occur, although both are certainly possible. The long term success of your programme may be contingent upon continued effort on the part of all family members, especially the injured individual.
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Family guide to low cost rehabilitation 
