Family guide to a low cost rehabilitation program

Your family member is discharged from hospital and you are ready to continue their rehabilitation. The steps listed below may serve as a guide if you wish to develop a program using free or low-cost resources which exist in your community.

Step 1: Obtain detailed objective information

The injured person: Since research has clearly demonstrated that the most disabling consequences of brain injury are cognitive and behavioural, information about the person’s current level of functioning in these areas is essential if a realistic program is to be developed.

You need specific information on things such 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 program must also take physical limitations into account.

In addition to general information about the person’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 program. Adaptive equipment such as a wheelchair, braces, and communication devices, must be appropriate to the person’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 program requires the effort of more than one person - unless it is undertaken in extremely small and manageable steps.

Community resources: This is definitely the time to start ringing around. 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 people 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. Think outside the box and don’t be afraid to approach these community services for assistance.

Step 2: Develop and implement your program

Now you are ready to set specific rehabilitation goals. Since you are designing your own program, you are free to include only those activities which you feel will be helpful to the injured person 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 person is able to awaken on his/her own, independently complete his/her morning hygiene routine, and prepare and clean up after eating; they should be dressed as if going out in the community each day.

Basic cognitive goals: People who have sustained brain injuries are frequently extremely distractible and can often 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 person 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 distractors should be increased as attention and concentration improve. The amount of consecutive time devoted to such activities can also be gradually increased until the person is able to continue at the task for a realistic amount of time.

Basic behavioural goals: When the person 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 social skill issues.

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, e.g. designed to stop behaviours. You must balance behaviours to be stopped with those you wish to see started so that the person is not left with a behaviour void. Your behaviour management program should utilise appropriate rewards to encourage the person 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 person on specific maladaptive behaviours and your reactions to them. Although such direct oral feedback is not customarily given in most social settings, the injured person 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 people with a brain injury is the lack of friends and social opportunities. The reasons for this are varied but physical limitations, behaviour control issues, decreased cognitive capacity and poor social skills are often major culprits. In many cases, the person may lack insight into the nature, range, severity or even the existence of deficits following the brain injury and may seem generally unable or unwilling to modify his/her behaviour.

This could be the case even in the face of interpersonal cues which are not at all subtle. Once the person’s behaviour is positively altered in the home setting, community recreation activities are often introduced in the rehabilitation program.

Your local state stroke association should have a list of recreation programs set up for people with disabilities. Don’t be limited by disability programs, however. If you feel able, reach out to other recreation programs in your community - try your hand at opening their eyes to inclusive practices, and including your family and loved one in their group. This can take time and education sessions (speak to your local Brain Injury/Stroke Association or call StrokeLine 1800 STROKE (787 653), however may be more advantageous in the long-term.

Academic goals: Some people with a brain injury may be able to successfully enrol in academic programs 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 person can keep track of class times, take notes, study for an examination, and learn the information presented. Also to be considered is having to deal with transportation to the campus, locating a specific classroom or dealing with distractions in the classroom.

Speak with the campus’s disability service. Most will have one and they can generally offer services such as notetaking, recorded lectures and one-on-one tutorials to assist.

Vocational goals: Some people with 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 people will be unable to pursue vocational goals because their salary would not compensate for government or private sources of disability income and/or benefits. People 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 program progresses, you should find that the person’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 person can perform the activity without your help. As the person’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 people 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 program 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 person 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 program is no longer in place does not necessarily mean that the injured person will stop acquiring or refining skills, or that deterioration will occur, although both are certainly possible.

The long-term success of your program may be contingent upon continued effort on the part of all family members, especially the injured person.

Many thanks to Judith Falconer Ph.D. for permission to adapt this article from her website at: brain-train.com.

This story was first seen in the Synapse bridge magazine www.synapse.org.au