Healthcare providers can have limitations and challenges providing optimum care for patients with intellectual disabilities. Siobhan Brennan and Susanna Goodhart highlight key professionals and carers who may be instrumental when trying to deliver good management and care along with other key factors to consider for this patient population.
While major efforts are being made to address inequality in healthcare, there remain significant barriers to both access and quality of provision for people with learning disabilities (PwLD).
The wide array of syndromes and other health difficulties associated with the many different, and many unknown causes of learning disabilities makes this population particularly vulnerable to a wide range of health concerns, including hearing loss. It is estimated that PwLDs make up approximately 2% of the UK population and that over 30% of PwLDs have a hearing loss .
The cognitive and communication difficulties inherent in learning disabilities inevitably make it difficult for many PwLD to identify their own needs, making MDT working particularly crucial for this population. Lessons have been learnt about historical cases of diagnostic overshadowing; where withdrawal, self-neglect or challenging behaviours in response to pain from an underlying physical or mental health concern have been seen as something the person does because of the learning disability, rather than highlighted as needing to be investigated by specialists .
Teams involved in audiological care need to consider carefully how best to prevent hearing losses from going undetected in those who are not aware it and/or cannot express about it themselves. Tendencies to use situational understanding; going along with what they can see others are doing, laughing along with jokey vocal tones, often lead those around PwLD to overestimate their hearing and verbal understanding.
Prescribing the optimum combination of carers and professionals to comprise an MDT for PwLD is unlikely to be effective as they are such a heterogenous population, so each MDT should be developed by considering the needs of the individual. There are however commonalities which can be considered when planning the make-up of each MDT.
PwLD, family and carers
The World Health Organization (WHO) suggests: “Collaborative practice happens when multiple health workers from different professional backgrounds work together with patients, families, carers and communities to deliver the highest quality of care” . It should go without saying that the involvement of the person themselves is fundamental to appropriate MDT working. While it is acknowledged that there are PwLD without known family members, if family can be identified, their involvement in MDT working can be crucial. McShea et al highlighted the need for carers to have greater knowledge around hearing loss to adequately support PwLD and in the context of the MDT, McShea’s conclusion is particularly pertinent: “Working in collaboration is necessary to achieve long-term change to practice” .
Who is the person’s key worker?
A key worker is defined by NHS England as “a named local care and support navigator” and there are people with learning disabilities who “should be offered a […] keyworker to coordinate and ensure timely delivery of a wide range of services set out in the person-centred care and support plan, working closely with the person and their families/carers where appropriate and ensuring a consistent point of contact” . If a person has a key worker their involvement in the MDT is important because as they should know the person very well and will be aware of other issues affecting that person. Furthermore, their involvement in the MDT should begin in the MDT planning stage as they can also provide vital information regarding who the most relevant people in the person’s life are. The key worker should ideally be identified at the receipt of the first referral to audiology services and, if it is not highlighted on the referral, the GP or local Community Learning Disabilities Team should have information about who the key worker is.
Examples of pictures that can be used to support people with difficulties hearing, understanding, or remembering spoken or written information, to understand what to expect from audiology appointments. These images have been reproduced with permission from Photosymbols.
What is the person’s communication method?
There are a range of communication methods used by PwLD, and input from speech and language therapy can support the person, their family and the audiology team with the impact that amplification may have on that particular communication form, as well as strategies to make audiological assessment more accessible to them. Likewise, hearing loss, and history of hearing loss can contribute a wide range of speech and language difficulties . Understanding of the nature of a hearing loss is crucial in understanding of language capabilities - for example, whether the person is unable to understand the complex concepts of negatives or plurals, or if they are unable to hear the quiet sounds of contractions such as “n’t” or high frequency “s”.
Does the person have other sensory needs?
As well as a higher incidence of hearing loss in this population, PwLD are also 10 times more likely to have a serious sight problem than the general population. Furthermore, the combined impact of glasses and hearing aids may be overwhelming for an individual so considering these issues in combination can be productive. The local Community Learning Disabilities Team may have a sensory lead who can both draw together professionals needed to address the sensory needs that a person may have, but also raise awareness among the Community Learning Disabilities Team professionals about the need to make referrals for sensory issues. This person is frequently an important contributor to the MDT for PwLD.
“Prescribing the optimum combination of carers and professionals to comprise an MDT for PwLDs is unlikely to be effective as they are such a heterogenous population”
Regarding other sensory factors, there is a higher incidence of autism in PwLD which can be related to other sensory difficulties. One of these that affect audiology provision is tactile defensiveness; the disproportionate experience of tactile stimuli. This can impact assessment, through resistance to otoscopy or the use of headphones. It can also affect the uptake of hearing aids. Occupational therapy members of the MDT can consider a desensitisation programme that may help with these issues.
At what stage of life is this person at?
The World Health Organisation state: “Multidisciplinary teams and information sharing systems are essential to quality health care for children with intellectual disabilities” . Focusing specifically on children with intellectual disabilities, they also propose: “Families must be supported in their efforts to obtain services across sectors, and health professionals need to have access to previous health care services and the history of any given child”. When considering our MDT, would the input from education be useful? There are authors who specifically raise the importance of MDT working at the transition period, for example Schrander-Stumpel et al state: “Coordinated and multidisciplinary health care is important in persons with ID and/or rare genetic syndromes. Inadequate transition from paediatrician to adult medical care increases the major risks for loss of quality of health care” .
How many is too many?
While there are clear benefits to MDT working, challenges can arise from cross-industry professionals having different perspectives and working styles that have been reported to create difficulties such as time delays in decision making and different expectations in time scales and processes . While it may be tempting to include a plethora of people in an appointment to create a comprehensive MDT, it is also worth bearing in mind the perception of the person around whom the MDT is focused. If gathered together simultaneously, too many people in the room can be problematic and can have a tendency to obscure the voices of some.
NHS England in 2015 published a service model for “Supporting people with learning disabilities and/or autism who display behaviour that challenges” based on multiple principles of good care. The importance of effective MDT working is iterated throughout this document and is best summed up by: “Everyone should have access to integrated, community-based, specialist multidisciplinary health and social care support for people with a learning disability and/or autism”.
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3. World Health Organization (WHO). Better health, better lives: children and young people with intellectual disabilities and their families.
Last accessed March 2020.
4. McShea L, Fulton J, Hayes C. Paid support workers for adults with intellectual disabilities; Their current knowledge of hearing loss and future training needs. Journal of Applied Research in Intellectual Disabilities 2015;29:422-32.
5. NHS England 2015. Supporting People with a Learning Disability and/or Autism who Display Behaviour that Challenges, Including those with a Mental Health Condition. Service Model for Commissioners of Health and Social Care Services. NHS England, 2015.
Last accessed March 2020.
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Declaration of Competing Interests: None declared.