Assessing people with MND for AAC
Augmentative and alternative communication (AAC) is an important clinical intervention for many people with motor neurone disease (MND).
This information is for health and social care professionals working with people with MND. It provides suggestions for best practice in AAC provision, and where to find more information.
As a key principle, an AAC assessment should be based on the needs and abilities of the person with MND and not, for example, on whether or not they can use a particular AAC device. There are currently no formal or published assessments specifically for AAC use by people with MND. However, the following key areas are suggested as best practice for establishing an individual’s AAC requirements.
The core features of an AAC needs assessment for a person with MND include:
- This is best conducted through an informal discussion. It is important to establish what the person with MND wants and what their needs are. This includes asking whether AAC support is wanted. If there is currently low interest, the motivation to use AAC may need further discussion.
- It is important to ask about expectations at an early stage. By establishing what the person with MND wants from an AAC system, it’s possible to explore how best to meet or manage the expectation and their needs. See the section Managing expectations of AAC
- Establish what other communication technologies the person with MND already uses. If they use email, text messaging and social networking sites, integration of an AAC system with these forms of communication should be explored.
- Some discussion about how and when the person with MND enjoys communicating may also be useful. Many people engage in a range of communicative activities and these all need to be considered in order to meet as many of the needs as possible (eg consider the need for AAC portability).
This should include communication strengths as well as problems experienced. Standard speech and language assessments may be useful, but only if placed in a functional context. What is important here is to understand how the person with MND is currently communicating, what practical communication difficulties, if any, they are facing and how these may change over time.
- Where relevant, assessment should consider posture, mobility, positioning, stability, and hand and eye movement. As an example, keyboard selection and switch operation may be considered.
- Collaboration between speech and language therapy, occupational therapy and physiotherapy should be considered where necessary. Further input from rehabilitation engineers/clinical scientists may also be important.
- Vision and hearing should be considered with reference to overall communication and, specifically, to AAC system use.
- If basic literacy and/or language problems are suspected, they should be examined further using a screening test or standard aphasia assessments, such as the comprehensive aphasia test (CAT). This will help to ensure appropriate system selection.
- If cognitive problems are reported or observed, further specialist assessment may be required. The Edinburgh Cognitive and Behavioural ALS Screen (ECAS) is an assessment tool that any health or social care professional can be trained in how to use.
- Some basic questions about familiarity and confidence with technology will enable judgement of how much AAC product support may be required. This may include on-going support and maintenance, as well as initial set-up.
- Take into account any technology the person is already using. It may be possible for software or apps to be added to a current system.
- AAC service delivery can be complex. The successful use of a system often relies on good teamwork at the assessment stage and, importantly, for longer-term use.
- Establish the level of support the person is likely to receive once an AAC system has been provided.
- Part of the assessment should include consideration of funding sources for any recommended equipment. See the section on Funding for AAC.
In the absence of any formal AAC assessments for people with MND, consider the use of published frameworks/models to guide the assessment process:
This is a classification of MND progression based on six levels of speech, hand function and mobility. The six groups are as follows:
- adequate speech and adequate hand function
- adequate speech and poor hand function
- poor speech, adequate hand function, adequate mobility
- poor speech, adequate hand function, poor mobility
- poor speech, poor hand function, good mobility
- poor speech, poor hand function, poor mobility
Be aware that there are likely to be changes over time as MND progresses.
Janice Light’s work on communicative competence is highly accessible and provides a helpful framework that can inform AAC assessment.
Competence is addressed in four areas: linguistic, social, operational and strategic. All four areas are deemed important for competent AAC use.
The model addresses a number of critical features, including the importance of the communication partner’s abilities, as well as those of the person using AAC.
Light J. Toward a definition of communicative competence for individuals using augmentative and alternative communication systems. Augmentative and Alternative Communication. 1989; 5:137-144.
Light J and Gulens M (2000). Rebuilding Communicative Competence and Self-Determination With Adults Who Have Acquired Neurogenic and Neuromuscular Disabilities. In Beukelman, Yorkston & Reichle (Eds.), Augmentative and Alternative Communication for Adults with Neurogenic and Neuromuscular Disabilities (pp. 137-179). Baltimore: Paul H Brookes Publishing Co.
A descriptive classification of four different profiles incorporating the function of both the person with an acquired dysarthria and the conversation partner.
Bloch S (2012). Conversation and interaction in degenerative diseases. In Yorkston KM, Miller RM, Strand EA and Britton D (Eds.), Management of speech and swallowing disorders in degenerative diseases (Third ed.). Austin, Texas: Pro-Ed.
This presents a number of areas that may influence an individual’s decision to either accept, reject or abandon the use of assistive technology. Importantly, it draws attention to issues relating to the individual, other people and the technology.
Lasker JP and Bedrosian JL (2000). Acceptance of AAC by Adults with Acquired Disorders. In Beukelman D, Yorkston K and Reichle J (Eds.), Augmentative and Alternative Communication for Adults with Acquired Neurogenic Disorders (pp. 107-136). Baltimore: Paul H Brookes.