Communication challenges for people with intellectual disability

Welcome back. And I hope you enjoyed your first week. You have now learned what intellectual disability means, how those with an intellectual disability present with poor health outcomes, and that the common health conditions associated with intellectual disability differ to those common among the general population. Now, whilst there are many challenges within health care practice that impact on people’s engagement, one of the greatest challenges is that of difficulty with communication. So today we begin exploring the area of communication for people with intellectual disability. Communication seems simple. We are exchanging information continuously moment to moment. Our world has become fast-paced, and the rate and modes of communication are ever-changing.

Despite these developments, the act of communication between people is simple, a two-way process of reaching an understanding of what one person wants to impart and what the other receives. We use verbal, nonverbal, written word, electronic, a vast number of means of communication with each other. However, for people with intellectual disability, the picture isn’t as clear. Lower educational status, cognitive ability, physical deformities, such as cleft palate, and other speech and language challenges are not uncommon among many people with intellectual disability. For example, up to 90% of people with intellectual disability have communication difficulties. The incidence of additional sensory impairments, including sight and hearing, is much greater than in the general population.

Up to 40% of people with intellectual disability have a hearing loss that is often missed or undiagnosed. People with autism have lifelong communication impairments around social communication, social interactions, and social imagination. Only 5% to 10% of people with intellectual disability have recognised literacy skills. And most are not able to access standard written information. These speech and language challenges interfere with the person’s comprehension, ability to express themselves, or to be understood. This inevitably has an impact on their health care experience. One of the most commonly identified barriers to providing excellent health care for people with intellectual disability is communication difficulties.

In a survey of 1,912 randomly selected GPs in Australia, 85% agreed that communication between themselves and their patients with an intellectual disability created barriers to providing health care. Barriers can also include the person’s comprehension of the questions being asked, resulting in difficulties in history taking. Difficulties in processing information may be exacerbated due to time constraints in a busy clinic. Some of the greatest challenges present for those with severe or profound level of intellectual disability who may have no further language skills and are dependent on others to identify and express their needs. This is particularly challenging for practitioners who are unfamiliar with intellectual disability. And this can result in a poor experience.

Practitioners themselves have expressed difficulties in understanding the person’s speech or articulation, causing difficulty in obtaining accurate information from the person. Similarly, people with intellectual disability have reported that communicating with health care professionals poses one of their greatest challenges. In the IDS TILDA study, one in three adults with an intellectual disability reported they found it difficult to make themselves understood when speaking to health care professionals. As communication difficulties increase, behaviours that are considered challenging typically increase in frequency, intensity, or duration, further worsening the situation and impacting on the exchange. When attending a clinic or hospital appointment, one of the first things that disrupts the communication experience with the person with an intellectual disability is failure to develop rapport.

This includes failing to talk with the person, failure to direct the conversation to the person, failure to make eye contact with them, talking over them or using jargon, talking to their carers instead of the person first. So no matter what else you engage in, if there is one message to take from today, it is always, always greet the person, talk to the person, and engage with the person who has the intellectual disability. People with an intellectual disability highlight that they are frequently overlooked when it comes to conversations in a clinical or medical setting, that all conversations or discussions, no matter what their level of intellectual disability, is often directed towards their carer.

Assuming that they will not understand insults their integrity and undermines their ability. What is required is that you, as a professional, take practical and simple steps to improve the experience and by doing this, you are making reasonable adjustment, which can be as simple as the introduction of accessible, easy read information to enable people to understand health assessments. The inclusion of this easy read material is beneficial in improving the overall experience for the person with intellectual disability. Further, it will empower the person and respect their rights. So as we complete this step of our course, be cognizant of the fact that people with intellectual disability do experience great challenges when it comes to communication.

And although you may consider these challenges reciprocal, there is something you can do about it. We will explore the principles and best practise for face to face communication, identifying practical tips that you can apply to your repertoire of skills as you build expertise to ensure the experience of the person with an intellectual disability is the best you can provide.