Chapter 8 Learning Disabilities
Introduction
• People with learning disabilities (LD) will meet with all sorts of health professionals in all types of settings, from GP practices, outpatient clinics, general hospital inpatient wards and specialist clinics.
• This volume will address some of the difficulties, and issues faced by physiotherapists when assessing people with LD, whether in the generic or specialist services.
• Reference will be made to the legislation in the United Kingdom, e.g. ‘Valuing people (DOH, 2001) and ‘The same as you’ (Scottish Executive 2000).
• The ‘Death by indifference’ report by Mencap (2007) highlighted six case studies where the National Health Service (NHS) failed to meet the needs of people with LD in general hospital settings, with the neglect resulting in unnecessary suffering and premature death.
• Three of the patients included in the case studies had chest complications, which were inadequately treated by physiotherapy.
• The report emphasised that the following health inequalities were experienced by people with LD and which need to be addressed:
What is a learning disability (LD)?
• LD is not a disease and is not an illness and will be evident from childhood, and in many cases without a clear cause.
• There are often links with pre- or postnatal injury or disease.
• There may also be links with genetics, chromosomal abnormalities or environmental factors.
• There is a historical perspective to LD which has resulted in people being excluded, institutionalised, labelled and deprived of their rights (Barrell 2007).
• The World Health Organization (1992) has defined learning disabilities as, ‘a state of arrested or incomplete development of mind’.
• LD is generally understood to be a combination of the following:
• LD can be divided into four very basic groups based on IQ scores:
• Those people with moderate or severe LD may also display other associated physical and mental health problems.
Prevalence of LD and profound and multiple learning disability (PMLD)
• The British Institute of Learning Disabilities (www.bild.org.uk), estimates that there are 1.2 million people with LD in the UK.
• According to research completed at Lancaster University (Emerson and Hatton 2005), approximately 985 000 people in England had a LD, around about 2% of the general population.
• Approximately 796 000 of these are over the age of 20. It was estimated that there were 21 000 people with PMLD.
• From Scottish statistics there is an indication that about 2–4% of the population have LD.
• The number of adults with LD is predicted to increase by 11% between the years 2001 to 2021 (Emerson and Hatton 2005).
• The prevalence of LD in the population over the age of 60 is predicted to increase by 36% from 2001 to 2021.
Profound and multiple learning disability
• The term PMLD is used to identify people with LD and additional disabilities.
• People with PMLD form a small, but significant section of the wider population of people with LD.
• Carnaby (2004) highlighted a difference of opinion relating to terminology.
• The definitions of profound intellectual disability most often cited include having an IQ of below 20 and describing individuals as those who are severely limited in their ability to understand or comply with requests or instructions. Most such individuals are immobile or severely restricted in mobility, incontinent, and capable at most of only the rudimentary forms of non-verbal communication (WHO 1992).
• People with PMLD are likely to be more vulnerable and require additional support with healthcare management, mobility and continence and the consequential outcomes.
• In practice, people with PMLD may learn to function within their environment using a variety of communication strategies.
Challenging behaviour
• There are specific conditions that can predispose an individual to display challenging behaviour.
• Emerson (1995) defined challenging behaviours as being ‘culturally abnormal behaviours(s) of such intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy’.
• A further definition states: ‘behaviour which is likely to seriously limit use of or result in the person being denied access to, ordinary community facilities.’
• Types of challenging behaviour can be described as: aggression, self-injury, destructiveness, over activity, inappropriate social or sexual conduct, bizarre mannerisms or eating inappropriate objects.
Autism
• The concept of autism is broad, with it being described as a spectrum disorder.
• It can present as a subtle problem of social understanding and functioning or as profoundly severe disabilities.
• People on the spectrum are referred to as having autistic spectrum disorder (ASD) or in the absence of LD and in the upper regions of the intellectual quotient of the spectrum (IQ > 70) are defined as having Asperger’s syndrome.
• People with LD may therefore exhibit autistic tendencies.
• Wing and Gould (1979) proposed that all people on the autism spectrum, irrespective of their cognition, have a triad of key impairments, which are:
• It is important for a physiotherapist to have an awareness of the effects of autism if linked to a person with LD, so that an approach can be appropriately adapted and an intervention designed to meet their individual needs.
Legislation
Mental Capacity Act (2005)
• The mental capacity act is relevant to physiotherapy as it covers the issues of consent and capacity.
• This is particularly pertinent for people with LD and the treatment they receive.
• It is a fundamental principle that people have the right to determine what happens to their body.
• This right is reflected in the rules of professional conduct and standards of physiotherapy practice (CSP 2005a).
• People with LD in the past have not necessarily been involved in decision-making and often professionals and carers may not have considered whether they have the capacity to make decisions.
• As physiotherapists, it is important to remember that touching a patient prior to obtaining valid consent may constitute battery under civil or criminal law.
• Gaining an individual’s consent to assessment and treatment is more than a legal requirement; it is a matter of common courtesy and helps to establish a relationship of trust and confidence (CSP 2005b).
• Capacity must be assessed for each individual task, e.g. someone may be able to consent to aquatic physiotherapy by being at and seeing the pool and they consent by changing and coming to the pool area. However they may lack capacity to consent to a smear test or understand the consequences of not undertaking the test.
• Each situation has to be assessed individually and it cannot be assumed someone ‘has capacity or not’ as it depends on the nature of the task or demand.
Mental Health Act (2005)
Knowledge specific to learning disability
Multi-disciplinary team (MDT)/multiagency working
• Physiotherapists working in the field of LD rarely work in isolation.
• They are generally based in a MDT made up of a variety of health care professionals; including specialist LD nurses, occupational therapists, speech and language therapists, psychologists and psychiatrists.
• Joint working is carried out with a number of professionals depending on the needs of the client.
• Close work also takes place with the care management team who are either social workers or occasionally LD nurses.
• Although some individuals live at home with family providing the main care, many individuals live in supported accommodation and therefore close working is essential with the care providers and local authority day services.
• Carers have either very limited medical knowledge or none at all.
• This is something that all physiotherapists should bear in mind when giving advice or training these staff.
Communication
• Many physiotherapists consider themselves to have excellent communication skills, but the usual verbal or written skills may be of limited use with someone who has LD.
• Working with this client group requires skills in both the delivery of information and comprehension of verbal and non-verbal messages.
• Speech and language therapists (SALT) can be a valuable source of information and there are courses available to gain a grounding in augmentative communication skills.
• However, courses are not always immediately accessible and therefore the skills need to be developed in light of increased awareness over time.
• It is often easy to make assumptions about someone’s level of comprehension as many individuals develop ways of interpreting their environment, such as situational cues, where routine may play a part in understanding a message, e.g. asking someone if they want a drink, when you are holding a cup of tea, or asking someone if they want to go out, when you have their coat in your hand.
• The question itself may not be understood, but by holding a cup or coat the message is reinforced.
• Many clients use such ‘objects of reference’ to communicate or use simple signing.
• As individuals with LD may have no verbal communication, it is necessary to develop skills in other forms of communication and these are many and diverse.
• Individuals may express pain and discomfort in a variety of ways and skills in reading body language and facial expression need to be developed.
• Alternatively increased symptoms may be expressed through an increase in what may appear to be ‘challenging behaviours’.
• Physiotherapists are often dependent on carers in these situations to describe changes in someone’s behaviour and from there a clear picture may emerge as to what is affecting the individual.
• For example; if an individual is uncomfortable in their seating, this may be expressed by self-injurious behaviour, as they may not be able to change their position to relieve pressure.
• They are reliant on others to interpret their need.
• When working with a diverse range of professionals and unqualified carers both written and verbal skills are essential and the ability to translate ‘jargon’ into easily understood language is necessary as carers assist with assessments and/or implementation of physiotherapy programmes.
• It is essential to ensure that carers are able to understand what is being said and what is required in order for the individual to receive the best management for their problems.
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