CHAPTER 3: AUGMENTATIVE AND ALTERNATIVE COMMUNICATION (AAC) DEVICES

1. AAC Landscape

AAC is any type of method or system that is used to replace or supplement natural speech. AAC allows people who cannot use conventional speech to communicate daily with others, both in person and digitally. AAC encourages independence, increases people’s ability to participate in society, and reduces the financial burden on their caregivers.

Common conditions that can lead to communication impairments include amyotrophic lateral sclerosis (ALS), Alzheimer’s disease, Parkinson’s disease, autism spectrum disorders, stroke, brain or head injuries, or cerebral palsy.60 People with other lifelong, acquired or progressive conditions may also have or develop expressive and/or receptive communication impairments in parallel. For example, rural rehabilitation

services across Pakistan, Uganda, and Zimbabwe identified that 38-49% of individuals with other primary disabilities also had some form of communication impairment.61

Both younger and older people face communication limitations. Children as young as 12 months old with little or no speech capabilities often benefit from early AAC intervention. Providing AAC to younger children can prevent learning delays, strengthen understanding of language and future communication ability, and allow for wider participation in school.62 As children age, their AAC needs will most likely evolve. Adults who develop communication impairments later in life as a result of disease or injury will require different types of AAC as many may have previously had natural speech capabilities. Adults who use AAC may also experience changing communication needs, especially if they have progressive conditions that increase the severity of their communication impairment over time.

Approximations vary on the number of people who require AAC. Estimates in the UK suggest that 0.5% of the population struggle with daily communication and would benefit from AAC. 63 Applying the same prevalence as in the UK would indicate a global need of around 40 million people. 64 However, the number and types of people requiring AAC in LMICs may be different as they generally have younger populations. The number of people with communication needs will continue to grow, especially in LMICs, driven by growing populations and increasing awareness of common communication impairments like aphasia (a communication limitation that impacts people after stroke or brain injury) or those associated with autism spectrum disorders or neurodiversity.65

There are generally two types of AAC: aided and unaided. Unaided AAC does not require external tools and includes methods such as facial expressions, gestures, and sign language. Conversely, aided AAC requires electronic or non-electronic tools to facilitate communication. The remainder of this landscape will focus on aided AAC. The term ‘system’ will be used broadly to describe aided AAC mechanisms, while ‘device’ or ‘product’ will be used to refer to specific tools.

Aided systems range from low-tech to high-tech products. Low-tech products are paper-based, while high-tech products are electronically powered systems.66 These products can be accessed through an array of motions. The four primary access methods for aided AAC systems are touch, mouse/mouse alternatives (e.g. joystick), eye gaze, and switches. Table 4 illustrates a range of methods to enable a person to access boards, charts, books, computers, etc. on which there will be text or symbols that the person is communicating. This may involve the use of speech output when using computer-based devices.

TABLE 4 – EXAMPLES OF COMMON AIDED AAC SYSTEMS

Paper-based / low-tech AAC examples

Direct touch / access (paper-based)		The term direct touch describes the way someone points to symbols or letters/words on a chart or page using a part of their body. It is also known as direct selection and direct access. People most often point using a finger, but sometimes use a fist, elbow, toe, or whatever works best for them. They may also use a pointing tool to facilitate direct touch.
Listener mediated scanning		Listener mediated scanning is the term used to describe the access method whereby a communication partner delivers the options that are available by pointing to symbols or speaking aloud the words, or by a combination of both, and the communicator indicates when the communication partner has reached the desired option.
Visual access		One way of presenting information when communicating through eye pointing is to use an E-tran frame. An E-tran (or eye transfer) frame is a clear screen rectangle with a central window removed. The idea is that the communication partner holds the frame between themselves and the communicator, making eye contact through the central window.
Coded access		Coded access describes an access method where symbols/text are effectively given a grid reference that the individual then communicates. It requires two separate charts to communicate. One chart contains the symbols/text, the other allows the communicator to indicate the location of the symbol they wish to communicate.

Electronic / high-tech AAC examples

Direct touch / access (electronic)		The term direct touch describes the way someone points to symbols or text on a computer screen using a part of their body. It is also known as direct selection and direct access. People typically point using a finger, but sometimes use a fist, elbow, toe, or whatever works best for them. They may also use a pointing tool to facilitate direct touch.
Mouse / mouse alternative		There are several alternative forms of a computer mouse that allow other ways of moving a pointer around a screen, selecting, clicking, and double-clicking when a typical computer mouse is difficult to use.
Switch		A switch is a device that when selected will activate a powered system, such as a computer, smartphone, or tablet, an electric wheelchair or environmental control.
Eye gaze		Eye gaze systems allow people with severe physical disabilities to access a communication aid or computer using their eyes. These devices have an inbuilt camera which tracks where an individual is looking, and allows the person to select an area of the screen by blinking, dwelling (staring for a consistent time), or clicking a switch using another part of their body whilst dwelling.

In 2017, global AAC revenue was USD 168.6 million,67 with a 70% combined market share in Europe and North America.68 Asia-Pacific made up 18%, while Latin America and Africa had 9% and 3% of market share respectively.69 Higher demand for AAC in the US and Europe is predominantly driven by access to funding. As a result, the five largest AAC suppliers (Abilia, Mayer-Johnson, PRC-Saltillo, Zygo, and Tobii Dyanox) can also be found in those regions. These suppliers tend to focus on product innovation and continuously release new high-tech devices.

Suppliers have minimal operations in LMICs because they cannot capture the same prices on their portfolio of high-tech products. Furthermore, they often do not see a strong business case to produce cheaper, less complex AAC products that could serve as alternative, more scalable options for LMICs. Some organisations, including non-profits and suppliers, have developed inexpensive online content that can be printed onto physical boards and shared across multiple users in order to increase access to AAC. NGOs, social enterprises, and other local manufacturers have also attempted to fill this gap by creating low-cost paper-based AAC products. Despite these efforts, there are currently no widespread solutions available.

Electronic AAC typically requires some form of hardware and software. Suppliers previously sold standalone AAC systems that had all necessary hardware and software self-contained within the device. Recently, smartphones and tablets have been able to replicate the operating systems of some AAC products, which has removed the need for standalone AAC devices. However, many individuals may need additional AAC products (e.g. switches or eye gaze cameras) beyond a smartphone or tablet. Suppliers have also created AAC products that can be connected (wired or wirelessly) to smartphones and tablets in order to further address the changing market. For example, some switches can now be connected via Bluetooth to generic smartphones and tablets.

People who need/use AAC also have access to a wider range of AAC software on the internet that can be downloaded onto their own smartphone or tablet for significantly lower cost. Organisations have also developed inexpensive and sometimes free AAC applications. Additionally, cloud-based software can now be accessed across multiple devices. Using tablets and smartphones as AAC devices also allows people to access other forms of interaction beyond in-person communication, such as social media and online content. While face-to-face communication is often the primary reason for AAC, many end users highlight the personal importance of these other forms of digital interaction. This increased connection is a key component of independent living and contributes to the realisation of human rights for people with disabilities.

As smartphone and internet penetration grows, there is an opportunity for LMICs to prioritise these devices as AAC tools. As discussed in Chapter 1, governments and insurers often do not want to pay for smartphones or tablets as a form of AT, given the perception that these devices are a luxury and are broadly accessible to the general public. Instead, many insurance plans restrict consumer choice by requiring users to buy more expensive standalone AAC systems.

Limited funding remains a key challenge to expanding AAC access to people with communication impairments. Many LMIC governments have issued public mandates to provide AAC, but there is often a lack of ownership across ministries and consequently no money is budgeted. Furthermore, many LMICs lack national health insurance plans like those in the US and Europe to partially or fully cover AAC. Without this financial support, people with communication impairments are forced to pay out-of-pocket for AAC solutions.

Awareness of the benefits of AAC is low in LMICs for several reasons. Data about communication impairments is not systematically captured in LMICs and therefore the need for AAC may not be fully understood. Identifying communication impairments can also be challenging in LMICs because there is a general shortage of experts capable of diagnosing and recommending AAC solutions. For example, there is one speech language pathologist (SLP) for every 3 million people in Sub-Saharan Africa, compared to one SLP for every 3,250 people in the US and UK.72 Furthermore, SLPs in LMICs are typically concentrated in urban areas, which can result in neglect of rural communities.

Medical professionals, including SLPs, often also have limited training in the benefits of AAC. In HICs, some organisations and governments have created tools to help build awareness and learning for medical professionals. For example, the NHS Education for Scotland developed IPAACKS (informing and profiling AAC knowledge and skills) as a resource to support the learning and development of people working with individuals who use AAC.73 However, these types of resources are lacking in LMICs.

In addition, many people who need AAC often lack the tools and resources to find and compare different AAC solutions. In HICs, social media and informal peer groups have allowed users to share their experiences with AAC and increase awareness. However, access to these groups can be restricted in low resource settings. With limited tools and resources, many people with communication impairments in LMICs go undiagnosed and do not have access to effective AAC solutions.

Feature-matching is the process of assessing the skills, preferences, and environmental needs of a person with communication impairments and identifying the appropriate AAC system for their daily lives. If done incorrectly, a user may end up using AAC that does not adequately address their functional limitation. For example, an assistive switch would be difficult to use for someone with severe ALS, also known as Lou Gehrig’s disease, a progressive nervous system condition that results in loss of muscle control. Instead, an eye-tracking device that does not require muscle control may be more effective.

Incorrect feature-matching and providing unsuitable products can result in several negative consequences. Users may require additional training to learn how to use the AAC system since it does not adequately address their needs; however, there is extremely limited availability of access to AAC training internationally. It can also be extremely tiring or disappointing for some people to use an ineffective system. This can lead people to only attempt communication for short periods of time or abandon the use of AAC altogether, which can increase the risk of isolation and result in additional demands on existing health services. Additionally, people with communication impairments have different limitations that require a wide variety of AAC. The most effective system for any individual is based on the user’s context and needs. AAC products must be culturally and linguistically appropriate for the user in order to ensure adoption. Finding culturally appropriate AAC products can be a challenge in LMICs, given many AAC products are first developed in English and/or with an American or European frame of reference. It is often difficult and time consuming to translate these tools into local languages, or to adjust symbols and pictures to fit local traditions and customs.

Freely available culturally appropriate symbol sets were created to overcome some of these challenges. For example, Global Symbols is an open source project that was started in 2016 in order to create an online database of high-quality symbols for different cultural contexts.74 Initiatives like Global Symbols are helping to expand AAC access to LMICs, especially in countries without localised AAC content.

Research in the US indicates that roughly one-third of AAC systems will be abandoned by users, often due to lack of support and training. 77 Ongoing support and training, both for the user and their support network (e.g. parents, teachers, and colleagues), are essential to avoiding product abandonment. Formal training programmes, online communities, and informal channels all help people learn how to effectively use and integrate AAC products into their daily lives. Routine evaluation is also necessary to ensure an AAC system continues to meet a person’s communication needs. For instance, people with ALS may have evolving communication needs as their condition changes. Loaning devices to people and replacing them once their needs change has proven to be an effective model. For example, the UK has saved taxpayer funds by reissuing almost 40% of nationally procured AAC devices. However, follow up after product provision is often neglected in LMICs due to budget constraints, limited professional expertise, and distribution complexity. This can result in even higher abandonment rates for AAC systems in LMICs.

2. AAC Access Challenges

The market landscape identified several barriers to address to provider greater access to AAC in LMICs. Other relevant barriers were also previously covered in Chapter 1.

Demand
Awareness	Many individuals and service providers are not aware of the benefits of AAC, primarily due to a lack of resources to find the right products that fit their needs. Furthermore, there is limited professional training and expertise to diagnose communication disabilities.
Financing	Out-of-pocket costs for AAC tools are too high and there is limited external funding. Furthermore, LMICs do not have health insurance programmes equivalent in coverage to those in HICs to partially or fully cover AAC products. Given one-third of AAC products will be abandoned by users, there is also false economy in purchasing AAC equipment that is not fully used.

Supply
Competitive Landscape	A limited number of AAC suppliers operate in LMICs as many believe the business case does not exist.
Product Profile	AAC tools are heavily skewed towards European languages and Western cultures. Finding culturally appropriate AAC products is difficult and time consuming.

Enablers
Provision	Limited knowledge and diagnostic skills to identify communication impairments can result in individuals not getting the products they need. LMICs have a shortage of resources and experts to facilitate appropriate feature matching, which can result in ineffective provision of tools.
Support	Ongoing support, training, and maintenance of AAC tools is often neglected in LMICs due to budget constraints, limited professional expertise, and distribution complexity, which can result in higher abandonment rates.

3. Proposed Interventions to Increase Access to AAC

Strategic Objective 1: Ensure clear global guidance for appropriate and effective AAC provision in LMICs

Rationale	A wide range of AAC tools is required to meet the various needs of people with communication disabilities. Providers often lack the expertise to match an appropriate AAC tool to a user’s needs. AAC tools should be linguistically and culturally appropriate to avoid abandonment.
Activities	Support a global normative body, such as WHO, to develop guidelines on appropriate communication impairment identification and feature-matching techniques. Disseminate guidelines through bilateral meetings and engagements to encourage adoption. Develop an online repository of AAC tools for LMICs that meet WHO Assistive Product Specifications.

Strategic Objective 2: Expand AAC access through country-level adoption of procurement, provision, and financing

Rationale

Out-of-pocket expenses for AAC tools are too high for people in LMICs. National insurance programmes can help defray costs across socio-economic levels. National procurement of AAC tools would encourage identification of AAC users and data collection on actual demand. This would also help pool demand for and reduce overall costs of the many different AAC tools needed to meet users’ needs. Furthermore, this would help systematically capture AAC outcome measures and increase feedback on useful tools. Early efforts to provide AAC have a profound influence on ability to learn and greatly improves the chances for that child to become an active part of society later in life.

Activities

Support LMIC governments to: 1) include AAC tools on national assistive product lists; 2) strengthen governance for AAC; 3) improve data collection; and 4) expand SLP capacity. Support the development of AAC programs specifically targeted toward early childhood and school based intervention.

Strategic Objective 3: Test and validate AAC solutions for low resource settings

Rationale	AAC suppliers are concentrated in HICs and often have limited operations in LMICs because of unclear demand and limited funding. Validating market demand and funding could encourage global suppliers to enter LMICs with new products.
Activities	Develop pilot programmes to test and validate low-tech and scalable AAC solutions. Improve market visibility of global suppliers (including examples of effective AAC services and equipment management models) to encourage expansion into LMICs.

Strategic Objective 4: Ensure availability of free and effective AAC applications

Rationale

Smartphones and tablets are some of the most cost-effective AAC devices on the market and offer access to a wide variety of AAC software. As smartphone and tablet penetration increases in LMICs, there is an opportunity to identify free software applications that can meet a variety of user needs. Expanding access to devices with free AAC applications can lower overall costs and increase AAC provision.

Activities

Support software developers to adapt free applications and resources to LMICs and local contexts. Advocate to governments to expand access to tablets and phones as a digital AT solution (see Chapter 1).