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XX.3 May + June 2013
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Public policy issues in augmentative and alternative communication technologies a comparison of the U.K. and the U.S.


Authors:
Annalu Waller

Augmentative and alternative communication (AAC) refers to strategies and techniques used by individuals who experience communication difficulties because they have little or no functional speech. AAC can support (i.e., augment) speech or it can provide a replacement (i.e., act as an alternative) for spoken communication. In addition to supporting expressive communication in adults and children, AAC can also support the development of language and even natural speech in children.

People who use AAC are a diverse group, as communication disorders can result from congenital disability (e.g., cerebral palsy, autism, Down Syndrome, and developmental delay), acquired disability (e.g., stroke, also referred to as cerebrovascular accident; head injury; and physical damage to the speech mechanisms), progressive disorders (e.g., amyotrophic lateral sclerosis, also referred to as motor neurone disease and muscular sclerosis) and temporary voice loss (e.g., intubation following surgery).

The majority of AAC interventions use unaided techniques (e.g., gesture and sign language) and low-technology devices (e.g., communication-symbol books and letter/word boards). However, speech language technologies provide unique opportunities for independent communication. Electronic AAC falls within the field of assistive technology. Although individuals who use AAC may benefit from technologies such as screen readers, voice recognition, alternative keyboards, and other input devices, AAC technology is characterized by its focus on interactive communication.

The growing awareness that research into AAC technologies has to engage with a wide range of stakeholders raises a number of training, professional, ethical, and legal challenges for researchers. As researchers, we need to understand the assessment, funding, and support policies surrounding AAC provision, as this knowledge will help strengthen the social validity of our research.

Despite a growing acknowledgment that access to communication is a fundamental right, funding for AAC remains a challenge for many. Funding in the U.S. is provided through various federal programs, some of which are not well supported at the state level, while funding in the U.K. is patchy and dependent on funding negotiations between different statutory bodies.

In England, a special education teacher reported to the communication champion in 2001 that “[t]hrough social care we can get an adapted bed for a child, but not funding to purchase a communication aid that would allow that child to say if they are tired. We can get a special cup, but not the means for the child to say they are thirsty. We can get a new wheelchair, but not the means for the child to tell us whether [she] is comfortable” [1].

In the U.S., insurance policies and health benefit plans will often deny applications to fund a communication device on the basis that it is a “comfort or convenience item,” although these exclusions are usually overturned upon request [2].

Electronic AAC technology can be broadly divided into dedicated AAC devices and software-based AAC applications that run on mainstream, or modified mainstream, platforms. AAC devices range from single-button programmable voice recorders through speech-generating devices (SGDs), also known as voice output communication aids (VOCAs). Most devices can be operated using direct selection (e.g., via a physical or an onscreen keyboard) or by switch access (e.g., using a scanning keyboard) depending on the physical ability of the user. The language and cognitive abilities of the user dictate whether the interface is literacy, symbol, or picture based. More recent developments have seen the proliferation of applications for mobile technology. Table 1 provides a summary of the types of devices available with indicative costs.

Assessment and Provision of AAC

In a perfect scenario, the provision of AAC begins with an assessment of need by multidisciplinary teams of qualified practitioners. Assessments will consider all aspects of an individual’s life, including education, employment, recreation, and any other communication environment that the individual may encounter. They will also assess the physical and cognitive abilities of the individual in order to evaluate the appropriate input method to control the device (e.g., direct input via a keyboard or a scanning switch) and the appropriate language system (e.g., text based or symbol based). Provision for the training of both the individuals and everyone who supports them, and ongoing support for the technology, will need to be identified, as well as time for regular reviews.

The funding of AAC must reflect the extensive and complex nature of AAC provision. Not only must funding cover the cost and support of the electronic devices, it also must cover specialized assessments and training. Even though the right to communication is entrenched in the law of several countries, funding AAC devices is often a challenge.

In many countries, communication is viewed as a fundamental right of each citizen. The International Society for Augmentative and Alternative Communication (ISAAC) has been instrumental in including AAC in the United Nations Convention on the Rights of Persons with Disabilities (http://www.un.org/disabilities/convention/convention-full.shtml). Article 21 (Freedom of expression and opinion, and access to information) states that parties “shall take all appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice, as defined in article 2 of the present Convention…” These rights are mirrored in national laws and policies that entrench and operationalize the provision of AAC in different countries (see Table 2).

Here, we will concentrate on the U.S. and the U.K. as examples.

The United States of America. The rights of U.S. citizens to have access to the assessment, provision, and support of AAC services and devices in the U.S. is primarily entrenched in the Social Security Act (which established the Medicare benefits in 1965), the Individuals with Disabilities Education Act (covering educational and early intervention provision), and the Americans with Disabilities Act (covering telecommunication services).


In the U.K., companies must guarantee that devices will be supported for seven years from the date of purchase. This places demands on companies in terms of development; the technology innovation lifecycle is longer than that observed in mainstream technology delivery.


Speech-generating devices (SGDs) in the U.S. are funded primarily through programs that focus on different populations (an excellent summary of funding routes is available at www.aacfundinghelp.com; see Table 3 for a summary). Assessment of need is undertaken primarily by specialized speech language pathologists (SLPs) or by multidisciplinary assessment teams. Funding applications normally require an SLP assessment and a prescription from a physician. Assessments are normally required before devices are procured unless the individual needing AAC has been diagnosed with a degenerative condition, for example, ALS, in which case time is of the essence.

The United Kingdom. The assessment and delivery of AAC devices and services are undergoing dramatic change in the U.K. AAC service provision and commissioning (procurement) is at both local and specialist levels. At the local level, service provision and commissioning partners (consortia of GPs—previously NHS [3] primary care trusts, local authority children’s/education services, schools, and adult social care services) are required to join up and align or pool budgets for equipment and allied services in order to provide seamless services. At a specialist level, the provision of equipment for people with complex physical disabilities is through regional NHS electronic assistive technology services or AAC Assessment Centers. The provision of NHS-funded services and equipment is guided by the NHS Specialised Services National Definitions Set (3rd Edition) – Definition No. 5. This definition is not prescriptive but provides guidelines in terms of assessment and service provision.

Funding is usually discussed at assessments and a proposed source of funding identified or agreed upon if possible. Depending on the circumstances and/or region, this is likely to be through the NHS trust, education authority, local authority, charity, or a combination of funding streams.

A number of reports have concluded that the funding of SGDs in the U.K. is currently a postcode lottery [1]. Table 4 summarizes these reports and their conclusions.

Manufacturers and Suppliers of SGDs

Developers of SGDs are required to comply with national standards set out by government and medical device authorities in order to establish and maintain billing privileges. Such accreditation allows suppliers to bill funding bodies such as Medicare in the U.S. or the NHS in the U.K.

The Medicare Prescription Drug, Improvement, and Modernization Act (also called the Medicare Modernization Act, or MMA), a U.S. federal law, was enacted in 2003. Section 302 of this Act required the Secretary to establish and implement quality standards for suppliers of durable medical equipment (DME), prosthetics, orthotics, and supplies (DMEPOS). All suppliers that furnish DME must comply with the quality standards to receive Medicare payments and to retain a supplier billing number. The standards are published on the Centers for Medicare & Medicaid Services (CMS) website (http://www.cms.hhs.gov/medicareprovidersupenroll). In summary, the quality standards state that suppliers of SGDs in the U.S. adhere to business standards, including administration, financial management, human resource management, consumer services, performance management, product safety, and information management; and service standards, including intake, delivery and setup; training and instruction of the beneficiary and/or their caregiver; and follow-up service. These standards ensure that recipients of SGDs are guaranteed an ongoing service that includes training and after-sales support.

In the U.K., regulation of medical devices is administered by the Medicines and Healthcare products Regulatory Agency (MHRA). The Medical Devices Regulations 2002 implement the provisions of the European Economic Commission’s (EEC’s) Medical Devices Directive, 93/42/EEC, and require all medical devices to carry the CE marking unless they fall within the definitions of custom-made devices or devices intended for clinical investigation. As in the U.S., SGDs are considered to be medical devices because the principal intended purpose is to compensate for lack of speech due to injury or disability, to provide a means of communication for those for whom this would be difficult or impossible, and/or to provide environmental control functions.

In the U.S. and the U.K., devices have to be approved as medical devices. In the U.S., SGDs are only eligible if they meet the requirements of durable medical equipment (DME). DME is defined as medical equipment that: can withstand repeated use, is primarily and customarily used to serve a medical purpose, generally is not useful to an individual in the absence of an illness or injury, and is appropriate for use in the home.

Sarah Blackstone [4] presented Medicare’s definition of what an SGD is and what it is not (see Table 5). Most funders adhere to Medicare’s definition of an SGD. In the U.K., companies must guarantee that devices will be supported for seven years from the date of purchase. This places demands on companies in terms of development; the technology innovation lifecycle is longer than that observed in mainstream technology delivery.

Viewing AAC devices as durable medical equipment raises issues when funding software-based AAC that run on mainstream platforms. Health-based funding (e.g., Medicaid in the U.S.) will not necessarily fund an AAC system that is embedded into a mainstream platform that offers additional functionality, such as Internet access or word processing. In a ruling in 2001, Medicare clarified that a laptop or PDA can be considered DME as long as the device is unable to be used for other purposes (www.aacfundinghelp.com). This affects how AAC companies package their systems; some companies produce their own platforms, which are either adapted mainstream platforms or their own dedicated hardware (see Table 1).

Table 1 illustrates the wide range of cost between dedicated and software-based applications. One of the reasons for the high cost of dedicated devices is the strict requirements of funding programs ensuring the durability, training, and after-sale support of this equipment. The reviews in the U.K. testify to the need for professional assessment and training in AAC provision to achieve successful use of AAC. It will be interesting to see how the explosion of AAC applications on mobile technology affects AAC provision when small numbers of individuals will still require sophisticated AAC solutions because of complex physical disabilities, while others will need expert training in communication development due to significant learning needs.

Other Potential Policy Issues in AAC

Multidisciplinary assessment teams tend to include representatives from speech-language pathology, occupational and physical therapy, education, and clinical engineering (also known as rehabilitation engineering). Clinical engineers have an electronic and computing background and may hold a postgraduate degree in rehabilitation engineering, which gives them an understanding of the biomechanics and neurological aspects of disability. There is also a clinical training aspect to such training, which includes client-practitioner relationships. Unfortunately, very few, if any, academic programs for computer scientists exist for those who wish to embark on a career in AAC.

The vulnerable nature of people who use AAC means that practitioners and researchers need to comply with statutory ethical procedures as well as maintain an ethical approach to clients. Ethical conduct demands that practitioners make decisions in the client’s best interest. Clinicians have a duty of care to their patients (see ASHA guidelines; http://www.asha.org/members/ebp/compendium/guidelines/), and so practitioners will have a duty of care to their clients.

One of the major challenges in user-centered research is that of informed consent. Gaining research ethics approval is often seen as a stumbling block when engaging in electronic AAC research. The main tenet of research ethics is that the well-being of participants in research projects is always held paramount. The main principles governing research projects are hence informed consent, confidentiality, and respect. The overarching principle is that of informed consent. This in itself poses issues for researchers, as participants who use AAC by definition have difficulty in communication, an essential requirement for obtaining informed consent.

Having a communication impairment does not necessarily preclude participants from giving informed consent. In such cases, it is good practice to confirm that participants understand the conditions of the study. The participant must be able to answer yes/no questions that confirm that he or she has understood the study protocol [5].

Further ethical issues of research involve methodologies in which participants are given experimental devices for the duration of the project, after which they are removed. This can cause distress, and poses ethical challenges if by removing the device the participant is deprived of communication. In these cases, the researcher has a duty of care to ensure there is a continued means of providing communication.

Summary

AAC provision is about communication and how technology can support that goal. The device or technology is only a tool within a larger package of training and support. The right of individuals is enshrined in international and national policies; however, state and local provision is still playing catch-up. Funding is available for SGDs, but again, securing this can be a challenge, and some individuals will fall through the gaps. The emergence of new technology often promises miraculous solutions at far less cost than that prescribed as a result of multidisciplinary assessment. The AAC field has to respond to rapid technological change, harnessing new capabilities while maintaining an understanding of the complexity of AAC provision. This places a responsibility on developers of technology not to underestimate the infrastructure needed to support the effective use of AAC. Speech language technology has the potential to liberate individuals to communicate to their potential, but only when it is part of a comprehensive package.

References

1. Down, K. Specialised AAC provision: Commissioning national services. Office of the Communication Champion and Council, London. 2011; http://www.thecommunicationtrust.org.uk/commissioners/reports.aspx

2. Golinker, L. Speech generating device funding for children. Exceptional Parent. (September 2009), 64–65.

3. Unlike the U.S., healthcare is provided nationally through the National Health Service (NHS). The NHS is the publicly funded healthcare systems in the U.K., primarily funded through general taxation rather than requiring insurance payments. The vast majority of health services are free at the point of use to residents of the U.K.

4. Blackstone, S. Augmentative Communication News (Special issue on AAC funding) 18, 4 (December 2006); http://www.augcominc.com/newsletters/index.cfm/newsletter_47.pdf

5. Balandin, S., Berg, N., and Waller, A. Assessing the loneliness of older people with cerebral palsy. Disability and Rehabilitation 28, 8 (2006), 469-479.

6. Bercow, J. The Bercow Report: A Review of Services for Children and Young People (0-19) with Speech, Language and Communication Needs. Department for Education (U.K.). 2008; https://www.education.gov.uk/publications/standard/publicationdetail/page1/DCSF-00632-2008

7. Augmentative and Alternative Communication Services: Quality Standard for Commissioners. Communication Matters. 2011; http://www.communicationmatters.org.uk/sites/default/files/downloads/standards/aac_quality_standard_for_commissioners_sept_2011.pdf

8. Scottish Government. A Right to Speak: Supporting Individuals Who Use Augmentative and Alternative Communication. 2012; http://www.scotland.gov.uk/Publications/2012/06/8416/0

9. Scottish Government. The Right Help at the Right Time in the Right Place. Strategic Review of Learning Provision for Children and Young People with Complex Additional Support Needs. 2012; http://www.scotland.gov.uk/Publications/2012/11/7084/0

Author

Annalu Waller is a professor in the School of Computing at Dundee University, Scotland, and currently serves as chair of the ACL Speech Language Processing for Assistive Technology (SPLAT) SIG.

Tables

T1Table 1. Examples of types of SGDs.

T2Table 2. Legislation affecting the provision of AAC in the U.S. and the U.K.

T3Table 3. Summary of Funding Programs for SGDs in the U.S. (Source: http://www.aacfundinghelp.com)

T4Table 4. Summary of reports on AAC provision in the U.K.

T5Table 5. Medicaid definition of a speech-generating device (from [4]).

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