Toa Heftiba @heftiba through UnSplash
These 10 Myths were developed back in May, 2002 in response to common statements I heard from lawyers and case managers working with people living with traumatic brain injury. Some of them evolved from referrals made to me for assessments which weren’t necessary (and one never wants to have to go through a neuropsychological assessment that’s not absolutely necessary!), some were based on frrequent questions from lawyers or case managers seeking services for their clients, some were in response to insurers who had misconceptions about community-based services.
By “community-based services”, I’m referring to either professional rehabilitation services that are provided in a person’s home, workplace, or neighbourhood and to paraprofessional (i.e., non-licensed) services that are typically of longer duration and more focused on “real life” rather than specific exercises to restore function.
I hope that helps to set the stage. Here we go..
1. I need the opinion of a medical specialist or family physician.
Many insurers and lawyers look to physicians to give them diagnostic, prognostic, or needs information about an injured person even after they have moved back into the community. Yet physicians, including most family physicians, typically have minimal contact with the individual and only infrequently request follow-up information from other service providers.
Thus, unless the problem is specifically medical, they are being asked to provide an opinion on day to day functioning that they never directly observe. In many cases, they are either relying solely on the self-report of the individual or on observations of the person in their office over a very brief period. Either way, you are not likely to get a complete picture.
When you need information about the person's level of functioning in the community, you are best to contact a community-based professional currently providing services or who is very familiar with the type of services the person is receiving and with access to objective data.
2. A neuropsychological assessment is needed to answer prognosis questions about long-term outcome.
Neuropsychological assessments are designed to detect differences in level of functioning from the average person. They were developed from the need to assess the probability of neurological disease based on patterns of performance. With some exceptions, most of the tests currently used still rely on the identification of differences from "normal" (read: average) performance. Neuropsychological tests are not designed to predict long-term outcomes. I
n addition, they generally have poor "ecological validity", which is to say that they are not very good at predicting how someone will perform in a real life setting. What you get from a neuropsychologist is a "clinical judgement" based on their experience with people showing the same pattern and degree of impairments as the person being tested.
To really predict long-term outcome, the person needs to be seen in a setting like the one being asked about (e.g., vocational, independent living, social). And if the neuropsychologist providing the opinion doesn’t have this kind of experience, they are likely to have trouble providing a meaningful clinical judgement.
3. I should expect short-term significant change in an impairment or disability/activity once community services are being provided.
When an injured individual returns to the community, it is likely that their speed of recovery has started to slow. Community services encourage the person to get involved in "real life" activities and to learn to do these activities as independently as possible (or to develop other supports to do so).
Change in the community environment is rarely quick. Short-term change generally implies intensive intervention (i.e., repeated or lengthy treatments over a short period, as in an hospital program) or a "simple" environmental fix that is usually identified before discharge to the community (e.g., a "reacher" allows someone to dress without assistance).
Individuals re-entering community living typically change at a pace no faster than the rest of us (i.e., slowly, not noticeable day to day) because their involvement in activities is sporadic/not frequent and therefore learning opportunities are fewer fewer (e.g., how many times a week do you do laundry?). This pace can be sped up if the individual is very keen, but in most instances they are trying to live "normally" and change can only be expected to happen gradually and in small steps.
4. Services are provided either by professional rehabilitation disciplines or semi-skilled “attendants”.
Support services provided in the community still require skills.
Rather than skills specific to any one area of rehabilitation (e.g., PT, OT, SLP), integration of knowledge about brain injury and teaching skills applied in natural settings is needed. If attendants without this mix are used, the person does not learn and progress toward re-establishing a life "equivalent" to their experiences prior to the injury.
Discipline-specific skills alone are generally not necessary or desirable in a hands-on community therapist because:
(1) a broader range of involvement with the person than any one discipline covers is required;
(2) discipline-specific therapists are frequently reluctant to cross discipline "boundaries"; and
(3) most discipline-specific training is focused on medical models or hospital-based practices.
By the same token, use of semi-skilled “attendants” generally tends to result in either simple maintenance of previous gains or even lead to loss of gains due to "doing for" the injured individual or not knowing how to respond to brain injury specific symptoms (e.g., loss of initiative, irritability/aggression, memory impairments). Community services that lead to meaningful functional gains need the "in-between" type of service provider with integrated, broad knowledge of brain injury and "real life".
5. People automatically need periodic re-testing for the rest of their life.
Test results show differences compared to the "normal" population and allow tracking of changes relative to how an individual did on the same tests previously. If these relate to your questions, then further testing may be useful.
If the person's or the referrer's main priority is re-establishing a certain quality of life, tests are unlikely to be able to provide this information and, given their limited "ecological validity" (see #2 above), they are poor indicators of how the person is doing in "real life".
Testing can be useful to answer certain specific questions (e.g., If this person changes to a new job when they are laid off, what types of modifications are they likely to have to make?), but ongoing testing is not typically useful or cost-effective.
6. Because people with brain injury have cognitive deficits, they can’t (and shouldn’t) direct their lives.
Following significant brain injury, a person is likely to experience cognitive changes that will make it harder for them to make considered decisions and to understand and appreciate all the consequences of potential decisions. However, they are usually still able to arrive at decisions consistent with their values and preferences when assisted through the decision-making process. Encouraging individuals to lead — or at a minimum — actively participate in the decisions that affect their lives supports their recovery by assisting them to feel responsible for and involved in their daily activities. Engagement also discourages the development of "learned helplessness" that can lead to the development of chronic illness or dependency patterns.
7. Either someone is getting “rehab” or they are in “maintenance” mode.
There is a common perception that a person is either "appropriate for rehabilitation" and should be receiving discipline-based services or that they have "plateaued" or are "not motivated" for rehabilitation and would not benefit from it. This myth is connected with the one we have already explored, that a person either needs discipline-specific services or only "attendants".
In addition to being wrong from the perspective of kinds of services, a person's lack of progress too often reflects the wrong kinds of services or the wrong approach. When someone has "plateaued", that simply means that fast-paced change has ended; it does not mean that additional, but slower-paced, change should not be expected or that a different, more suitable approach may not result in additional gains.
A person who is "not motivated" for rehab may just be tired of hospital or clinic-based artificial exercises and want to get back to their "real life". If functional therapies can be delivered in natural settings and the person sees these as meaningful, their "motivation" may be quite high.
8. I can’t expect the same level of accountability for time and services from community-based providers.
You should ask for and expect to receive the same accounting for time spent and objective outcomes of services from community-based providers as you would from any other provider. These outcomes may "look different" since they reflect success in re-establishing a lifestyle as similar as possible to that pre-injury (e.g., steps taken toward successful socializing and making friends or identifying work capabilities instead of percentage gains on a clinic measure), but you should still be able to assess whether the provider is delivering what they are paid to do.
9. If the person says they are fine and don’t need services, they don’t.
Wait — if this is a myth, isn't it contradictory to the importance of the person livingwith the TBI leading the decision-making? Not really. It may be true that they won't benefit from additional services right now, but this also may be where the person "starts", precisely due to difficulties in understanding and appreciating the factors involved in, and outcomes of, their decisions. (For example, turning down services or funding at the present time, without realising the offer, once refused, will disappear forever.)
Or it may be the very nature of their injury that they are unable to see the changes in themselves and their struggles to "stay afloat". I recommend using the same approach here as above - have someone who is very familiar with their status in their community setting(s) assist them to explore and more thoroughly consider the factors relevant to their decision. They may still turn down services at that time, but you can be more confident that it is not simply a symptom of the injury that indicates even more strongly the need for some kind of treatment.
10. Neuropsychology is the most important psychological expertise for longer-term support of people with BI.
Neuropsychology focuses on the assessment of neurological conditions; the identification and diagnosis of brain-behaviour links. Many neuropsychologists in Ontario and elsewhere are not proficient in providing treatment or behavioural rehabilitation and offer only periodic evaluations (remember Myth #5?).
The most useful psychological resource you can have available is a psychologist with expertise in (neuro)rehabilitation, especially as applied to individuals with cognitive impairments. In addition to knowing the rehabilitation literature, they must be knowledgeable about brain injury and be able to apply learning theory to the teaching of new skills (or the regaining of old skills).
There’s my opinion, based on decades of work with individuals living with brain injury, their families and friends, other service providers, case managers, lawyers, and directing community-based services programs.
if you have questions, comments, or feel this needs updating, please comment below. I like feedback ;-)