Hidden Disability, Hidden Ability

Written by Jo Throp Posted in Blog

Hidden Disability, Hidden Ability

Have you stopped to think about what you have done today? Many of us will take for granted the efforts our body and brain go through to make sure we achieve the tasks we set out to do. More often than not a lot of our daily tasks are done automatically without a second thought.

Most probably you have got yourself up, dressed, fed and travelled to work. You are completing complex tasks in challenging and ever-changing environments, whilst at the same time (in general) controlling your moods and emotions.

You can express yourself verbally and clarify your thoughts to others using gestures and body language. You can seamlessly integrate technology and objects to help you achieve your goal. You can control and adjust your actions, movements and behaviour to overcome barriers along the way.

What is even more amazing is that all of this happens automatically without apparent thought or effort. Of course this last statement is slightly untrue; a vast amount of effort is put into helping us function effectively, the key is that we are not aware of it.

Neuro-occupational therapists (OT s) have a unique understanding of the brain and the essential role it plays in helping us function effectively. Human function within neuro-rehabilitation is a science. The College of Occupational Therapists defines an OT as ‘An expert in the science of doing’. OT s therefore understand the relationship between you and your environment, and in the case of a disability they understand how and why barriers to achieving their client’s goals do occur.

So why is it important to be able to demonstrate accurately a client’s functional ability within the litigation process?

This question is even more important for clients who have had a traumatic brain injury and the answer may be within the functional observations and assessments of the treating of neuro-OT . These observations are very different to an interview style assessment. Indeed, a functional assessment is about observing the individual while they undertake a task in order to gauge an objective opinion of their abilities and limitations. While many of these skills or limitations remain ‘hidden’, they can be uncovered while observing someone complete everyday tasks. It is the skill of the neuro OT to determine an accurate picture of a client’s abilities by devising the correct functional assessment.

An example of cases where functional assessments were pivotal in establishing the abilities of clients who had sustained traumatic brain injury are worth considering in that both clients had very different levels of abilities.

Hidden disability

We had been asked to work with a young woman of 37 who had been involved in a road traffic collision in 2011. On the face of it, she was functioning well, sharing a flat with a friend and trying to return to work part time. She reported some frustrations and concerns about managing to live alone independently but had presented well to the experts. It could have been assumed that her disabilities were relatively minor and that, given time, she would have returned to ‘normal’. 

The idea of ‘normal’ is often taken on face value. Family members of clients with hidden disabilities often report frustration after being greeted by a friend or acquaintance on the street. Statements by well meaning individuals such as ‘amazing recovery’ and they are ‘back to normal’ actually do not reflect reality in terms of functional capabilities. It is only when individuals with hidden disabilities try to ‘get back to normal’, return to work or challenge their executive skills that problems are uncovered. Equally it is true that some young men who have residual subtle difficulties as a result of brain injury can disengage with the rehab process, fail to get out of bed or be resistant to help. This could be, erroneously, attributed to ‘teenage angst’ and therefore ‘normal’.

Hidden disabilities however are widely acknowledged to be a problem for individuals with executive function problems and have to be teased out through functional assessments.

In fact, for this young woman problems were initially raised by her flatmate who expressed concerns regarding the amount of ad hoc support he was offering. A neuro-occupational therapy assessment was undertaken. On the initial assessment, the young woman reported vague problems with organising and planning her week and an increase in feelings of anxiety.

Subsequently, a functional assessment was undertaken of the client but this time within her local community. She was asked to lead the neuro OT to her local shopping centre, complete a number of tasks which included asking for advice, locating and purchasing items within a shop and withdrawing money from a cash point. On the face of it, these are activities that we all do with no problem on a daily basis. The functional assessment uncovered problems however with this client’s executive skills including planning, problem solving and decision making, skills that are essential for safe and independent living. It transpired that she was easily disoriented in shops and within her local environment. She had learnt a route on foot to the shops but was unable to deviate from that route. She used public transport, but only one bus route and was not confident using other options, as she was unable to understand the bus timetable. To visit friends she would use a taxi as she was guaranteed that the taxi driver would get her to her destination.

Video surveillance taken of this lady appeared to show her living a full and independent life however the detailed functional observations undertaken by the neuro OT provided a clearer picture of her actual disability.

To provide a standardised objective measure regarding this lady’s functional abilities an assessment of motor and processing skills (AMPS) was also completed. The AMPS assessment is a measure for evaluating a person’s quality of performance of personal or instrumental activities of daily living (AD L). The results of the assessment for this individual highlighted marked occupational performance difficulties compared to the general population.

The objective functional observations when combined with the AMPS assessment findings were used to inform decisions about what she would or would not be capable of in the future and also guide her rehab regime.

Hidden ability

On the flip side, uncovering ‘hidden abilities’ is essential for individuals with profound difficulties. Sadly it can be the case that individuals with complex and/or behavioural problems are regarded as not being able to engage in any purposeful activity.

The second case study was a client, 42, who had complex physical and behavioural needs as a result of a road traffic collision where as a pedestrian he had been knocked down by a car. This gentleman sustained catastrophic injuries. He had a 24-hour package of care in place and he lived within a residential home. A programme of community rehabilitation over a period of time uncovered a complex presentation of behavioural, sensory and physical needs. Through functional assessment, the neuro OT was able to begin the process of challenging his abilities from one of passivity to engagement in tasks and integration into his local community. This was dependent on a fine balance of his needs and the structure of his environment. A structured functional assessment identified the level of his ability with appropriate support. For example, over time OT input enabled him to withdraw money from a cash point, browse for items of clothes, order a drink in a coffee shop and purchase a newspaper.

To provide further objective information regarding this gentleman’s motor and cognitive skills Interactive Metronome Therapy (IMT) was used. This specialist intervention helped to refine brain timing and when used in conjuction with specialist occupational therapy assisted with improvements in cognitive and motor planning skills within activities of daily living. In addition to this it offered a baseline from which the OT could work from and objectively measure change.

The skill of a good neuro OT is knowing what to do with the information and how to take that person forward to achieve their personal goals and aspirations

The definition of the word ‘hidden’ is kept out of sight, concealed, invisible and unseen. Within the realm of neuro rehabilitation it is essential to ‘peel back’ the layers to uncover an individual’s ‘hidden ability’ or their ‘hidden disability’. Once that has been done the skill of a good neuro OT is knowing what to do with the information and how to take that person forward to achieve their personal goals and aspirations.

About the Author

Jo Throp

Jo Throp

Jo Throp is a neurological occupational therapist and clinical director at Krysalis Consultancy - an established nationwide specialist neurological occupational therapy consultancy which provides community-based rehabilitation and vocational rehabilitation services.

Jo is a practicing clinician with a passion for occupational therapy. Since qualifying in 1997 she has worked within the specialist field of neurology and has extensive experience of setting up and managing both community and inpatient multi-disciplinary neurological rehabilitation services, within both the NHS and independent sector.

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