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AAC Project
Independent Living Centre
WA (Inc)
Disability Industry Plan Seed Grant
Mapping Best Practice
“Everyone has the need to communicate. The challenge is to figure out a way of providing all individuals with
appropriate ways to meet this need, regardless of their age, diagnoses, or level of disability.” (Sigafoos & O’Reilly, 2004, p.1229)
Author: Kelly Moore on behalf of the Independent Living Centre WA.
Completed June 2008 Contact: [email protected] or [email protected]
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Table of Contents
1. Executive Summary
2. Statistics in AAC
3. Current AAC Practice in Australia and Western Australia
4. Funding for Communication Devices in Australia
5. Specialist AAC Services in Australia
6. AAC Services in other Countries
7. Models of AAC Service Delivery
8. Barriers and Supports to Achieving Positive Outcomes in AAC
9. Family Centred AAC Practice
10. Assessment and Prescription
11. Trial, Training and Support for AAC Users
12. AAC Professional Expertise and Education
13. Success and Abandonment
14. Evidence Based Practice in AAC
15. Summary
16. References
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1. Executive Summary The terms Augmentative and Alternative Communication (AAC) describe communication
modes used to supplement or as an alternative to oral language, including gestures,
sign language, picture symbols, the alphabet and devices that produce synthesised or
digitised speech. AAC users may include those whose developmental disability impairs
their capacity to vocalise, those who have difficulty developing language and people
who lose the capacity to speak due to trauma or the onset of disability through illness.
Current AAC practice and service delivery in Western Australia varies greatly depending
on a wide range of factors. Most AAC services are delivered by primary therapists
employed in the health or disability sectors. In addition, educators are often involved in
AAC service delivery. Some specialist AAC service providers are able to be accessed.
Funding for communication devices varies greatly across the states of Australia.
AAC devices are relatively expensive items of equipment that require a comprehensive
approach to prescription supported by skilled clinicians- principally a Speech Pathologist
and Occupational Therapist. The process undertaken by professionals for an individual
to obtain successful independent use of an AAC device can be lengthy and challenging.
It involves comprehensive multidisciplinary assessment and implementation in
consultation with multiple stakeholders, including the individual and their family.
The current environment of rapid technology advancement combined with research and
development has had a significant impact on this particular area of assistive equipment.
The challenges for clinicians working in this climate are multiple. For example, each new
device released into the market place requires clinicians to source additional capital to
purchase the equipment, up-skill staff in usage and enable clients to trial. In addition,
successful AAC service provision requires specific clinical expertise which is difficult for
a therapist with a large caseload to acquire. After devices are funded, there is an
ongoing need for support from a therapist which is challenging.
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This project aims to seek out methods that will improve the effectiveness and capacity of
the sector to gain the best outcomes for clients with complex communication needs
using the most cost effective methods and processes. “Not only is there the financial
cost of AAC equipment and instruction, but there are also significant learning costs for
individuals who use AAC and the facilitators who support them.”(Lund & Light, 2007,
p.323). The sector has not had the opportunity since the Community Aids and
Equipment Program (CAEP) began funding devices to collectively examine existing
practices and determine best practice options for the future development of a cost
effective system that fully utilises existing capacity.
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2. Statistics in AAC
Due to the diverse terminology used to describe communication disability, it is difficult to
compare and gather statistics related to the need for communication devices. However,
“recording the size, characteristics and needs of populations that use or could benefit
from AAC is essential for the ongoing development of AAC as an area of practice”
(Sutherland, Gillon & Yoder, 2005, p.295).
Currently in WA, there is no consistent data or statistics regarding AAC users or
prescription. “It is imperative to document the long-term outcomes of AAC interventions
to ensure accountability, justify costs, guide clinical interventions and establish best
practices to improve services to individuals with complex communication needs” (Lund &
Light, 2006, p. 284).
The 2006-2007 DSC Annual Report-Summary Data states, that of individuals who
accessed services provided or funded by the Commission, 56% required support with
communication.
SCOPE is a disability organisation in England and Wales whose focus is people with
cerebral palsy. Their aim is for disabled people to achieve equality. According to SCOPE
(2007) just lower than 2.5% of the total UK population has communication support
needs.
The Scottish Executive Communication Support Needs: a Review of the Literature
(2007) reported an estimated 1-2% of the population in Scotland has communication
support needs.
In the UK, approximately 4% of all children have a persistent communication impairment
which is part of a wider condition & this group is most likely to need AAC (Hartshorne,
2006).
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“The reported prevalence rate of 0.15% for complex communication needs among the
student population in New Zealand is similar to the rate reported in previous studies in
Australia” (Sutherland et al., 2005, p. 302)
In Victoria, Bloomberg and Johnson (1990) found the incidence of individuals with
complex communication problems to be 0.12 % of the total state population.
SCOPE (2007) reported;
• 75% of high tech AAC devices are abandoned
• Parents make up the largest group taking responsibility for programming their
child’s communication device
• One third of AAC users felt they had not had sufficient training in how to use their
communication equipment
• 70% of high tech AAC users had their communication device break down at least
once
• 1 in 5 people who use high tech communication devices reported they did not
have access to their device at appropriate times
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3. Current AAC Practices in Australia
Speech Pathology Australia (2004) has published a position paper on Augmentative and
Alternative Communication. It provides guidelines for AAC service delivery, assessment
and intervention. In particular it describes the following principles for AAC service
delivery;
• Team approach, involving the individual with complex communication needs and
their significant communication partners as integral stakeholders
• Assessment and intervention should take place in the clients environment and
across multiple contexts
• Training and support for communication partners should be available, particularly
at times of transition or critical times for the communication user
• “Extensive and in some cases ongoing, support may be required in order to
establish appropriate and functional communication” (Speech Pathology
Australia, 2004, p.4). Current AAC Practices in WA Currently in Western Australia, AAC prescription is most commonly initiated by families,
health or education professionals. A local or primary therapist would normally drive the
prescription process. Access to Speech Pathologists and Occupational Therapists
varies depending on an individual’s disability and eligibility for therapy services. Children
who are eligible for registration with the Disabilities Service Commission are eligible for
services from early intervention and school aged therapy service providers. Early
intervention therapy services are also provided through the WA Department of Health to
children with developmental issues. Therapy services for adults with disabilities are
often reduced in comparison to paediatric services. Access to adult therapy services
varies greatly depending on a number of factors.
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Primary therapists in both adult and paediatric disability services often have large
caseloads which may not allow for sufficient time to commit to a thorough and ongoing
AAC assessment and implementation plan. In addition, many therapy providers work
within a consultative model that may not allow for individualised assessment and
intervention practices that are required for success in AAC service delivery. Private
therapists may also be involved in the AAC prescription process. Overall there appears
to be an inadequacy of services to support the effective prescription and implementation
of AAC for those with complex communication needs across the age span. This lack of
services has also been reported in other countries where speech therapists have large
caseloads and where there are a limited number of therapists with specialist expertise in
AAC (Holmes & Logue, 2003).
There are currently no standards for prescription across therapy providers in Western
Australia. There is a need for improved local professional AAC knowledge and greater
coordination and planning between service providers of AAC (Ko, McConachie & Jolleff,
1998). The level of expertise of Speech Pathologists and Occupational Therapists who
prescribe AAC varies greatly. Some therapists with a special interest in AAC may pursue
additional professional development to up-skill in this area.
Due to the current shortage of therapists to fill vacant positions & caseloads in WA at
present, it is common for individuals to have multiple changes in therapists, thus
disrupting the AAC prescription and implementation process. A change in therapist may
also occur when an individual changes therapy service providers for example, from an
early intervention provider to school age provider. This high turnover in therapy staff can
be frustrating for individuals, families and other stakeholders. Particularly as it takes time
for a therapist to build rapport with a new client and often reassessment is carried out by
the therapist to gain an overview of the client’s communication skills. The effect of going
back to the beginning of the AAC prescription process is particularly time consuming
and may delay the client gaining an AAC device and the skills to use it, in a timely
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manner. Commonly therapists may approach a client with a new or different device or
technique, based on their previous experience rather than any other factors. In addition,
for existing AAC users, the new primary therapist may not be familiar with the particular
AAC device that their client is using. The primary therapist will most likely require
additional time to address the ongoing need to learn new software/ skills as they gain
new clients with AAC devices. The combination of these factors may result in a lengthy
and ineffective AAC prescription process. Commonly therapists approach the client with
a new or different device or technique, based on their previous experience rather than
any other factors.
Specialist AAC Consultative Services
The Independent Living Centre of WA is a non-government, not-for-profit, community
based, assistive technology and equipment information and advisory service. The ILC
Tech team is able to provide information and advice about AAC, however they do not
prescribe communication devices. The ILC Tech team includes a Speech Pathologist,
Occupational Therapist and Education Technology Specialist. The ILC Tech service can
be accessed by anyone in the community. ILC Tech is resourced with a wide range of
communication devices which can be demonstrated to therapists, families and other
stakeholders. Some of these are available for hire from the ILC for clients to trial.
The Centre for Cerebral Palsy is a charity, providing services and support to people
living with cerebral palsy and their families throughout WA. CP Tech is a consultancy
service that works with clients, families and staff in providing advice, support, and
technical expertise to assist people with CP and other disabilities to gain greater
independence through the use of equipment and technology options. CP Tech consists
of a consultation clinic and a workshop. The CP Tech team includes occupational
therapists, physiotherapists, speech pathologists, and an engineer. They offer AAC
prescription and support services to clients registered with The Centre for Cerebral
Palsy.
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There are also other therapists with expertise in AAC assessment and implementation at
other therapy organisations who may assist other therapists within their organisation to
prescribe AAC devices.
Current AAC Funding in WA The Community Aids and Equipment Program (2007) is funded and administered by the
Disability Services Commission. Each service provider or region manages and prioritises
their own CAEP budget for all types of equipment. The CAEP Imprest List (section 4.4)
details information about funding for communication aids. In order for aids and
equipment from the imprest list to be funded by CAEP, individuals must have a
permanent or likely to be permanent disability and meet several other criteria.
CAEP will fund basic and essential equipment for primary use in the home. This criteria
applies to all equipment funded by CAEP, but may not be particularly relevant for the
funding of communication aids. Communication is a vital skill which is essential for
functioning in all environments, not just within the home, but within the wider community,
including education and employment settings. In addition, CAEP funding can not be
accessed by individuals who are hospital inpatients. In some cases however,
communication devices may assist with rehabilitation and these individuals may benefit
from having access to this funding.
According to the CAEP manual, communication device prescription must be based on
assessment and the prescriber must be able to clinically justify the prescription. A trial of
the communication device in the client’s primary residence should also occur prior to
applying for funding. CAEP will cover costs associated with trialing communication
devices prior to purchase. In addition, the prescriber must provide training in the use of
the funded equipment. However, the cost associated with training individuals and their
communication partners to use an AAC device is not included in CAEP funding and can
be substantial. There are currently no available figures for the number of hours required
to train an individual to use a particular AAC device and the amount of training time
differs depending on multiple factors.
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CAEP will fund communication devices up to the ceiling level cost of $6,500.00. If
additional funding is required for a more expensive device, the prescriber can apply to
the CAEP Clinical Sub Committee for costs above this ceiling level. Additional funding is
available for communication software, access hardware, mounting systems or access
and replacement batteries.
CAEP funds many types of assistive equipment and technologies and there are often
waitlists as local budgets are prioritised. Waiting for a communication device may have a
significant impact on the potential AAC user. For example, the language development of
a young AAC user may be delayed as they wait for a device to be funded. In addition, if
an individual waits for a significant amount of time, for example 12 months, their
communication needs may change and the original device that was applied for may no
longer be the most appropriate to meet the needs of the AAC user. Finally,
communication is a basic right. Without the timely funding of communication devices, we
may be denying individuals the basic human right to communicate effectively their
choices, opinions, feelings, and concerns.
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Funding for Communication Aids in Australia
In Australia, the provision of communication aids varies depending on which state you live in.
State WA SA TAS VIC NSW QLD Name of Equipment Program
CAEP Community Aids and Equipment Program
State Wide Complex Communication Needs Project
Community Equipment Scheme (**currently under review)
Aids and Equipment Program
PAPD Program of Appliances for Disables People
Medical Aids and Equipment Subsidy
Name of Specific Division/ Program for Communication Aids
- ** Information based on current 12 month project “State Wide Complex Communication Needs Project” (Commn devices previously funded through Independent Living Project)
- Specialist Statewide Services- Yooralla Brooklyn Electronic Communication Devices Scheme
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Name of Government Department responsible for funding
Disability Services Commission
Office of Disability and Client Services
State Health Department Department of Human Services
NSW Health Department Health Department of QLD
Funding Available for Communication Devices
Covers communication device up to $6500.00 Additional funding is available for add ons
Funds trial, purchasing of communication devices and possible follow up education sessions
Covers $2000.00 for any equipment. Communication devices are often not successful at gaining this funding due to prioritisation of other equipment in the scheme (eg. wheelchairs)
Provides assessment and electronic communication devices for people of all ages with complex communication needs
All equipment is placed on a waitlist which is prioritised by need. Eg. Level 1- urgent equipment. Communication aids come in at Level 3 or 4 which may involve waiting 6 months- 2 years for funding. Sometimes easier to get low cost items, ++ difficult to get funding for high cost items
Covers communication device up to $3000.00 plus carry bag, plus 2 switches if required
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State WA SA TAS VIC NSW QLD Ceiling Level $6,500.00 No limit $2000.00 only $6000.00 for
6yo and over $4500.00 for 0-6 y.o.
No limit, however waitlists are long
$3000.00 only
Is funding available above ceiling?
Yes, applications can be made to the CAEP Clinical Sub Committee
- This is the ceiling level for all equipment in the scheme. No specific limit for communication aids.
- - No. Any additional funds must be fund raised
Trial An adequate trial should occur whenever possible
Clients loan a device, then if that device is suitable they are given that device and another is funded to replace it in the trial library. Minimum 2 weeks trial is expected
No guidelines Expected by not mandatory.
Not mandatory Expected by consultants who review applications
Training post supply Application guidelines state; Must provide training in use of the prescribed equipment and supply care and maintenance, however additional funding for this is not provided
Utilising packages and materials developed locally and nationally, the Statewide Complex Communication Needs team will run regular training to enhance communication opportunities and participation for people with CCN. The target audiences for this training may include individual clients, families, carers, professionals and the wider community.
No guidelines 3 hours of training is included as part of the funding.
- Application guidelines state that the prescriber must arrange for setting up and programming, training client and carer in effective use of the device and provide information about maintenance.
Other sources of funding commonly sought
Not required Many individuals who need AAC self fund or seek support from charitable organisations
Self fund or fund raise above ceiling
Funding from charities such as Variety or Lions Clubs
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State WA SA TAS VIC NSW QLD
Who is eligible for the funding?
-permanent or likely to be permanent disability -not currently hospital inpatients -holders of pensioner concession card or health care card or carer payment -are able to demonstrate financial hardship -have not received compensation payout -are in a residential situation that is structured to encourage independent living -equipment must be for use primarily in the home
Anyone with complex communication needs (including dyspraxia) who is eligible for services from disability SA or Novita.
The scheme is available to Tasmanian residents living in the community who have a disability of long term or indefinite duration or require equipment as part of discharge from a hospital or residential care and are;
-ineligible to receive equipment from other government funded programs
-have not received compensation in respect of the injury
-are the recipient of one of the following benefit card entitlements: Health Care Card, Pensioner Concession Card, Health Benefit Card or Interim Concession Card Entitlement
A&EP provides aids, equipment and home modification subsidies for people who: -are a permanent resident of Victoria and holder of a Medicare card; -have a permanent or long term disability and/or are frail aged; and -need aids and equipment from the A&EP summary list of available aids on a permanent or long-term basis.
Individuals who -have a permanent and long term disability and need equipment to live and participate in the community -live permanently in NSW -are unable to obtain equipment, aids and appliances from any other government program -have not received compensation or damages in respect of the disability -have been discharged from hospital for at least a month and are not eligible for equipment under loan arrangement by hospital or health service
-permanent QLD resident Must have a Centrelink pensioner card OR DVA pensioner card OR Centrelink Health care card OR Queensland Govt Seniors card or Centrelink confirmation of concession card entitlement form
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State WA SA TAS VIC NSW QLD Who makes the application?
Speech Pathologist Primary therapist refers their clients to the SWCCN project
Anyone Speech Pathologist Set list of prescribers
Waitlist Dependent on area/ other applications
No waitlist as yet- new project No, must reapply each round
Not at the moment Yes- 6 months +
Not usually
Additional Information
Additional funding is also available through CAEP for
• Low Tech Communication System
• Software (eg. Wivik, Boardmaker)
• Access to device (eg. switches)
• Mounting system
• Voice enhancing devices
See website www.novitatech.org.au/sccn
-no effective loan system in this state -SPA TAS branch has recently made an application to the Community Equipment Scheme for designated funding for communication aids -Education Department sometimes funds laptops and software for students
Quick issue within 4-6 week’s Reissued equipment is even quicker.
Electrolarynges are also covered by this funding pool
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5. Specialist AAC Services in Australia Victoria; Yooralla Brooklyn Electronic Communication Devices Scheme
The Electronic Communication Devices Scheme provides training and communication
devices for people of all ages with complex communication needs. This scheme
operates from one statewide specialist centre, employs specialist Speech Pathologists
in the area of AAC and manages dedicated government funding for communication
devices. There is a ceiling level for adult and school age clients of $7000.00 and
$4,500.00 for children aged 0-5. The scheme also operates a communication device
recycling scheme which works effectively to reissue equipment in a timely manner.
Introductory device training for families and individuals is included when a new device is
funded. Primary therapists can also access support and training from this specialist
service.
South Australia; State Wide Complex Communication Needs Project
Novitatech in South Australia is currently completing this project. The project will provide
funding for the purchase of communication devices for individuals with complex
communication needs (including dyspraxia). It will also provide a trial and loan scheme,
AAC assessment and prescription service and support and training for primary
therapists and individuals who receive funded devices. It will also commence follow up
groups for individuals with complex communication needs to practice their skills. A team
of specialist AAC therapists will staff this team. Primary therapists may refer their clients
to the project.
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6. AAC Services in other Countries See Appendix 1- International Models; taken directly from Submission to John Bercow
Review from Communication Matters. (Moulam, 2008, p. 77-83)
Current Reviews of AAC Prescription in Other Countries In September 2007, the UK Government launched the Bercow review of speech,
language and communication needs of children up to the age of 19 years old. The final
report is due in 2008.
Several groups, including Scope, Afasic and Communication Matters made the following
recommendations to the Bercow review in a joint submission in January 2008. This
submission put forward the following recommendations;
• Need for baseline data on individuals with complex communication needs (collect
statistics on demographic trends and levels of need).
• Creation of a specific service for children with complex communication needs,
including a sub group for AAC. This specific service should include the provision
of equipment as well as training, support, advice and information for the child with
complex communication needs and those around them.
• Development of care pathways for children with complex communication needs
• Establishment of a register for children with complex communication needs, to be
maintained by GP statistics
• Consider ways of addressing shared responsibility between health, education and
social care in the provision of services to children with complex communication
needs, to avoid conflicting priorities between service providers.
• Recommend the development of best practice frameworks across service
providers to ensure services are appropriately commissioned to allow early
identification and meeting the needs of children with complex communication
needs
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Communication Matters (Moulam, 2008) made an additional submission entitled the
Desired Outcomes from The John Bercow Review of Speech, Language and
Communication Needs in Children 0-19 years. Communication Matters is the leading
UK-wide organisation focusing on the needs of both children and adults with complex
speech, language and communication support needs that may benefit from AAC to
maximise their opportunities and enhance their quality of life. Their submission
recommended the following;
• A National Service Framework for children with speech, language and
communication needs
• Central government funding for the supply of communication equipment and
replacement
• Regional centres of excellence to be funded using a formula based on the
population of each local authority and expected prevalence
• Local authorities and health to jointly fund multi-disciplinary local teams to ensure
holistic provision of ongoing support in both school and home environments
• Specific recommendations relating to assessment of need and provision, training
and support in education, training and support for families and social networks,
children and young people as achievers and transition research relating to AAC
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7. Models of AAC Service Delivery
The Communication Matters submission to the Bercow review (Moulam, 2008) describes
the following models of service provision in AAC.
Model Pros Cons Specialist Service Model Centralised location and budget which bulk purchases equipment to ensure low cost of provision
-removes funding responsibilities from local authorities -enables prioritisation of AAC equipment, as it eliminates competing priorities -decreases waiting time between assessment and provision
-equipment is owned by funding provider and may not allow for flexibility of use by the ACC user -Provides initial assessment, provision and maintenance of devices, but may not provide ongoing assessment, support and training that is required -equipment bought for stock may limit choice
Retail Model Voucher system based on customer self assessment of needs and use of the voucher system to purchase basic equipment that is required equipment
-opportunity for those who have self assessed themselves to have a need; to gain a basic standard communication device
-reliant on customers self assessing and knowing what type of equipment is required. -may leave consumers open to marketing from retailers without objective advice -no provision for AAC specialist assessment and support for the AAC user -may encourage replacement, rather than upgrading or repair -this model is designed for basic equipment and was initially implemented for adults. Will need to be assessed for its application to supplying paediatric equipment -this model cannot cope with equipment with constant technological development or with the changing communication development and needs of children
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Model Pros Cons Regional Centres of Excellence Predominant model of service provision and support in UK. Pooled budgets for AAC assessments, training, provision and support.
-Employ experienced AAC professionals -specialist knowledge and network of expertise are required to run this model of AAC -Multidisciplinary teams design support packages to suit AAC users and those around them
-few centres cover a large area -many of the centres in the UK are financially vulnerable and services vary between centres as a result
Communication Aids Project This type of project aims to assist school aged children with complex communication needs by providing technology to meet their curriculum needs for spoken and written communication. It also supports students with transition between schools and post school options.
-This model may be flexible enough to cope with changes in AAC technology and the continual develop of communication in children with complex communication needs. -Children can be re-referred to the program and reassessed
-time limited project in the UK -Many children were left with equipment for their age
Telecare Model Multi agency approach, provides telecare and telehealth services
-Designed for disability sector -Standardised assessment procedure enables minimal waiting times between prescription and equipment provision -Telecare response database keeps records and information about the program and drives future service development -Model provides initial assessment and ongoing support and assessment of need
All equipment is standardised and may not be appropriate for the complexity of AAC prescription
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Model Pros Cons Specialist School Model This model develops expertise in schools. Schools must demonstrate AAC knowledge and skills to achieve specialist school status in partnership with other schools. Schools are encouraged to share their expertise.
-Successful sharing of expertise and skills in local area -Builds capacity in AAC and Assistive Technology in mainstream schools
-Few schools have this status currently -Support is tied to education setting -Schools still need to access specialist regional centres to gain funding to purchase devices
Statutory Monies Model Statutory funds are amalgamated to purchase equipment and support for individuals with disabilities. This may include central funding administered at a local level or central funds administered by the government.
-This model provides a holistic package to supply and support a range of equipment
-Access to funding is often bound by tight eligibility criteria -it is often routine to provide standardised equipment that may not necessarily meet need
Social Enterprise Model This model can exist under any of the above models, but it is coordinated by a third party organisation that may set up a communication aids service.
-Can utilise expertise currently in the sector that is not being recognised -Takes funding and provision of equipment responsibilities away from local authorities
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Model Pros Cons Children’s Trust Teams This model works on the suggested Children’s Services and Children’s Trusts model; that local authorities meet AAC needs for children by establishing country wide multi-disciplinary teams. Service agreements are written with regional centres for specialist advice, training and complex assessment.
-local service with multidisciplinary team who can draw on expert advice for assessments.
A school in the United States offers the following model of service delivery for school aged
children (Hunt-Berg, 2005).
Model Pros Cons The Bridge School Model Students temporarily leave their local school and attend Bridge School intensive AAC program. A collaborative team approach, involving families and local educational staff is used to develop the student’s community participation through AAC technology.
-intensive -staffed by professionals with AAC expertise -transition program back into local school -involves families and local educators
-intervention is provided outside of the students regular school environment -Support is tied to education setting
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Another model of AAC service delivery has been implemented in New Jersey, USA (Enstrom, 1992).
Model Pros Cons Communication Resource Centre Two tiered service. First level provides interdisciplinary assessments, AAC device loan service, in servicing, client training and follow up with clients, families and professionals. Second level of service is community based, where professionals support device implementation and application in the clients various environments.
-staffed by professionals with AAC expertise -support to generalise AAC use in the community -involves local professionals and significant others
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8. Barriers and Supports to Achieving Positive Outcomes in AAC Barriers and supports to achieving positive AAC outcomes have been widely
researched. Lund & Light (2007) have documented these factors which can be used to
reflect on current AAC practices in WA and influence positive change to service
provision for individuals with complex communication needs. Many of the barriers to
positive AAC outcomes listed below currently occur in AAC service provision in WA. We
can look at these barriers in light of current practice in WA and adopt policies to support
positive AAC outcomes and effective service delivery.
(Table from Lund & Light, 2007, p.326) Barriers to positive outcomes in AAC
Attitude Barriers • Negative attitudes of professionals • Low expectations of family members • Negative attitudes of non-disabled peers • Negative attitudes of society
Cultural differences • Difficulties developing communication systems for multiple languages
• Professionals’ lack of understanding of cultural issues
Technological Barriers
• Limitations in technology • Difficulty accessing technology • Technical breakdowns
Service Delivery limitations
• Lack of availability of services • Limited knowledge of professionals • Lack of collaboration between professionals • Limited focus of goals
Supports to positive outcomes in AAC
Social Support • Supportive, inclusive community • Strong parental advocacy • Expectations of success • Family involvement in interaction
Personal characteristics
• Patience • Persistence/ determination • High expectations • Social nature
Services • Competent and knowledgeable professionals • Training for families, facilitators and teachers • Effective communication between
professionals, family, school
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9. Family Centred AAC Practice
Given that most AAC devices are primarily supported by a child’s parents, a family
focused and family centred model of service delivery should be adopted. “Families need
to become a more integral part of the decision making processes in order to reduce the
degree of frustration with professionals, noncompliance with intervention strategies and
abandonment of AAC devices” (Parette, Huer & Brotherson, 2001, pg, 79).
Robinson and Sadao (2005) describe a person focused learning method as a means of
preparing future AAC professionals to work with family members and individuals who
may require AAC. “Person focused learning was found to have potential as an effective
method for assisting AAC professionals to develop team-based and family based
collaborative skills” (Robinson et al., 2005, p.149). The contributions and insights
offered by those affected by AAC prescription should inform our service delivery (McCall
et al., 1997).
Studies by Angelo, Kokoska and Jones (1996) and Angelo, Jones and Kokoska (1995)
investigated parents of children, adolescents and young adults using assistive AAC
devices and their priorities for their child’s future needs for device use. This information
may be useful for professionals to engage both parents in the AAC process.
Mother’s Priorities Father’s Priorities
Increasing knowledge of assistive devices Increasing knowledge of assistive devices Planning for future communication needs Planning for future communication needs Social opportunities for AAC adolescent with non disabled peers and other AAC users
Need to know how to maintain and repair device
Integrating assistive devices into the wider community
Knowing how to program the device
Developing community awareness Getting computer access for their AAC using adolescent
Support for AAC users Finding volunteers to work with child Getting computer access Getting funding for devices or services Finding trained professionals Knowing how to teach their child Finding advocacy groups Integrating assistive devices in the home
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A recent article (O’Keefe, Kozak & Schuller, 2007) summarised the results of a focus
group of AAC users in Canada. These AAC consumers stressed the following points be
considered in AAC service delivery.
• Preparation of AAC users to succeed in situations to maintain relationships and
employment
• Improving service delivery of their devices
• Improving technology in devices (high and low tech)
• Raising public awareness of AAC
• Developing methods to teach reading to AAC users
• Developing AAC training for all health professionals.
While maintaining family centred practice, it is important that other settings beyond the
family environment are involved in the AAC process, including schools and employment
settings. For success in AAC, the communication device must be supported in all
settings.
Impact on Families
AAC devices and technology can have a variety of effects on family members. Family
involvement is paramount for successful AAC outcomes and it is therefore important that
we consider this impact on families (Angelo, 2000). In particular, family stress levels
should be considered when prescribing devices, in light of their effects on family
functioning (Parette, 1994).
Angelo (2000) surveyed families who had received AAC devices. Over 50% of those
parents surveyed agreed or strongly agreed with the following statements;
As a result of having or using AAC
• My responsibilities have increased
• My roles have increased
27
• Demands on my time have increased
• I am an advocate for AAC
• My knowledge of technology has increased
• I think the device has adequate features
• My communication with my child is better
• Our child relates better with professionals and peers
• My child can convey frustration, emotions, emotional and physical wellbeing
• My child is more independent
• My child feels less stress when communicating
• My spouse and I are positive about my child using AAC
• My child is positive about using an AAC device
Over 50% of those parents surveyed disagreed or strongly disagreed with the
following statements;
As a result of having or using AAC
• The device restricts my lifestyle
• Much of my time is spent programming
• Much of my spouses time is spent programming
• I find it difficult to use the device at home
• I think the device needs repairs too often
• I feel the device restricts communication
• My family feels the device is a burden
• My family feels the device carries a stigma
Given that these factors have been identified, it is essential that we discuss their
implications to families who are considering AAC so that they can be prepared for the
impact of AAC on their family life. In turn, AAC professionals can use this knowledge to
better provide resources and support for families using AAC (Angelo, 2000).
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10. Assessment and Prescription
It is beyond the scope of this literature review to examine protocols and models of
assessment in AAC prescription. However, it is relevant to report some findings in the
literature surrounding assessment and it’s impact on service delivery.
It is widely mentioned in the research that AAC assessment should be carried out by a
multidisciplinary team and in collaboration with the individual, their family and other
stakeholders such as educators and employers. The beginning of the AAC process
should involve comprehensive assessment, in order to ensure the correct device is
selected for the user and assessment should be ongoing (post prescription) as the AAC
user’s communication needs will change over time. In addition, assessment should
encompass consideration of client characteristics, environment, roles that AAC user
must undertake and technology characteristics (Pendergrass & Vestal, 2002) as well as
a large range of factors such as linguistic skills, cognitive ability, literacy skills, physical
access, attitude of user, their family and communication partners and those peoples
ability to provide essential long term support (Matthews, 2001).These findings outline
the need for AAC service delivery models to allow therapists with AAC expertise
adequate time and resources to carry out this complex ongoing assessment across
various contexts.
As AAC service delivery moves towards evidence based practice it is also suggested
that in order to ensure that we document long term outcomes in AAC, a broad range of
domains should be measured initially and throughout the AAC process. These include
“receptive language, reading comprehension, communicative interaction, linguistic
complexity, functional communication, educational and vocational achievement, self
determination, quality of life and contextual factors” (Lund & Light, 2006, p. 297). It is
therefore important that therapists work towards consistency in AAC assessment, to
ensure collection of relevant data to provide evidence in our practice. This evidence and
data can then demonstrate levels of need and provide leverage for future funding.
29
It is paramount that effective ongoing assessment and support is provided to ensure the
success in AAC. This support must be provided to the AAC user, their family and
significant others and other stakeholders. “Successful AAC service delivery also
depends upon thorough observations and ongoing assessments of children’s
communication behaviours across settings” (Cress, 2004, p. 51). This is an important
consideration when determining effective AAC service delivery. The investment of
resources to ensure comprehensive AAC assessment and prescription is vital, as is
investment in ongoing support services for AAC users.
30
11. Trial, Training and Support for AAC Users AAC professionals would agree that trialing a communication device prior to applying for
funding is essential to ensure the correct device has been prescribed. In a study of
Australian Speech Pathologists, approximately 50% reported they could access
specialist AAC centres or services for assessments, device loans and resources. Nearly
one third of the respondents in this study said a lack of resources had inhibited them
from recommending AAC (Balandin & Iacono, 1998). This case may be more typical for
therapists in rural or remote areas.
It is repeatedly discussed in the literature that one of the main reasons for
communication device abandonment is inadequate training for the AAC user and their
communication partners across environments. At times, clients may be exposed to AAC
instruction in individual sessions with their Speech Pathologist. “Although some
individual sessions may be necessary during the initial stage of training, AAC instruction
must be integrated into the client’s entire routine.” (Pendergrass & Vestal, 2002, p.45).
Providing training in naturally occurring communication contexts is essential for the user
to experience meaningful practice and allows for communication partners to observe
and learn the communication system (Pendergrass & Vestal, 2002). Communication
partners across family, leisure, education and vocational contexts need to be trained to
support the AAC user to develop competency at using their device. The investment of
time and commitment for supporting the device needs to be accurately portrayed to
communication partners across these contexts, in particular to families (Pendergrass &
Vestal, 2002). This includes the ongoing need for maintenance and updating
vocabulary.
Murphy, Markova, Collins and Moddie (1996) estimated that participants in their study
received 40 hours of therapy per year. They estimate that someone learning English as
a second language requires 200 hours of teaching to hold basic conversation. “To learn
to use an alternative method of communication, particularly when one has a physical
31
disability and/ or learning disability, is a far more difficult task, yet there is comparatively
little time allowed for it and far few adequately trained personnel” (Murphy et al, 1996,
p.39).
Additional training time is also required for communication partners to learn the AAC
system and to assist with long term support for the user in terms of communication
strategies and system maintenance. McCall, Markova, Moodie and Collins (1997) found
differences between the interactions of AAC users with formal and informal
communication partners. They suggest joint training with formal and informal
communication partners to share experiences and promote better awareness of each
other’s perspectives.
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12. AAC Professional Expertise and Education In WA, Speech Pathology students receive 9 hours of AAC training in the final year of
their Human Communication Science degree at Curtin University. Speech Pathology
students may also gain additional AAC experience in their clinical placements. The
amount of AAC tuition hours in clinical practice and education varies between Australian
universities. Speech Pathologists as well as Occupational Therapists with a particular
interest in AAC may pursue additional training at professional development events and
conferences. Post graduate education in AAC is not available at any Australian
Universities.
Ratcliff and Beukelman (1995) found that in the US, 15% of institutions offered at least
one course in AAC, 67% offered one course devoted to AAC and 8% of institutions did
not offer a specific AAC course, but added smaller amounts of AAC content throughout
the curriculum. The majority of AAC courses were offered as post graduate education
and approximately half of the institutions reported that within their faculty, at least one
staff member listed AAC as their primary area of expertise. Clinical contact hours for
students in the area of AAC were also evaluated. “On the average, 28% of the students
in any given institution were reported to obtain some clinical clock hours in AAC” (Ratcliff
& Beukelman, 1995, p. 66).
An Australian study of Speech Pathologists and AAC practice revealed few opportunities
for Speech Pathologists to access higher qualifications in AAC and that there were
limited opportunities to access support from more experienced therapists in this
specialist area (Balandin & Iacono, 1998). Many of the surveyed therapists reported
knowledge and skills associated with unaided systems such as signing but less
knowledge and reduced skill levels associated with high tech AAC systems. In this
study, 29% of respondents reported they had recommended an AAC system that they
had never seen. Notably, knowledge of AAC was most limited among Speech
Pathologists working with adults who have acquired disorders. “Overall, there appeared
33
to be a lack of AAC expertise within the profession in Australia. A lack of interest in
obtaining further information on AAC and an unwillingness to enroll in further
education…” (Balandin et al.,1998, p. 239).
Collier and Backstien-Adler (1998) describe a training and support model to develop
AAC competencies at three levels; general awareness of AAC, competencies for
Speech Pathologists and specialised competencies for specialist AAC service providers.
Many professionals may be involved in the assessment, prescription and
implementation of AAC devices. This may include the Speech Pathologist, Occupational
Therapist, Physiotherapist, Rehabilitation Engineer and education staff including
Teacher, Education Assistant and Learning Support Coordinator. “Most Australian
Speech Pathologists are involved in AAC practices in some way” (Balandin et al., 1998,
pg. 247), however some may be misinformed about the application of AAC to various
clients groups. The Communication Matters submission to the Bercow review found a
significant lack of training of professionals involved with the provision of assistive
technology. It noted that most professionals require post graduate education in the area
of assistive technology and/or in house and short course training. Many professionals
gain knowledge of a particular AAC technology from self training, or on the job training
driven by necessity (Matthews, 2001).
Balandin and Iacono (1998) discovered several reasons why Australian Speech
Pathologists decided against prescribing AAC. These included the negative attitudes of
the family, the client demonstrated presymbolic communication behaviours, a lack of
resources, a family or teacher’s lack of AAC knowledge or skills and the belief that AAC
inhibits speech.
Overall, it appears that there are limited opportunities for professionals involved in AAC
to access further education. There are many myths surrounding AAC resulting from a
lack of knowledge on the benefits of AAC. These myths may also lead professionals to
34
not consider AAC as a possible option for their client. Lack of professional knowledge
significantly affects AAC application and service provision (ASHA, 1981). Many
therapists need to be empowered to discuss the benefits of AAC on language
development when families feel that an AAC system may impede their child’s speech or
language development. Given the lack of professional expertise in AAC, it is therefore
not surprising that many AAC users and their families are inadequately trained to use
their communication device (SCOPE, 2007).
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13. Success and Abandonment
It is difficult to define what constitutes success and abandonment in AAC. Johnson,
Inglebret, Jones and Ray (2006) define success as “long term use of one or a series of
AAC systems with a majority of (communication) partners” (p. 86). Abandonment, in this
study, was defined as occurring when an individual ceases using an AAC system but
still requires one. The perspectives of Speech Language Pathologists were examined.
Factors relating to long term success of AAC were ranked. The top 5 factors included;
1. AAC user experiences successful communication
2. Degree to which the AAC system is valued by the user and communication
partners as a mode of communication
3. Variety of communication functions served by the system
4. Match between users physical abilities and system characteristics
5. Support for the system from the user and their family
(Johnson et al., 2006).
The reasons for inappropriate abandonment as ranked by ASHA Speech Pathologists
included;
1. Communication partners believe they can understand the user without using the
AAC system
2. Insufficient provision of opportunities by the communication partner, for the user
to use AAC system to participate in conversations
3. No opportunity or need to use the AAC system
4. Reduced or lack of motivation of communication partners
5. Users preference to communicate by other modes
(Johnson et al., 2006).
Overall, the results of this study indicated that “respondents believed that a complex
network of factors accounted for success or abandonment of AAC systems in all cases,
rather than a single factor or small set of factors” (Johnson et al., 2006, p.95).
36
It is estimated that 75% of high technology communication devices are abandoned due
to lack of training and support (SCOPE, 2007). Phillips & Zhano (1993) found that 29%
of communication devices are abandoned due to lack of consultation with AAC user,
device not meeting users needs or poor device performance. In addition, a device that is
too simple to meet changing needs or too complex that it is difficult for the user to
operate, may be abandoned (Pendergrass & Vestal, 2002).
Murphy, Markova, Collins and Moodie (1996) summarised the obstacles to efficient AAC
use as;
• Lack of availability and accessibility of the AAC system
• Lack of knowledge of communication partners
• Insufficient therapy/ training of the system for user and communication partners
• Selection and availability of appropriate vocabulary
• Lack of reliability of high technology systems
• Inability to use high tech systems in some situations (e.g. pool, bath)
This study found that AAC users inconsistently used their device in different situations.
In particular, AAC system use was increased in formal day placement situations, often
where therapy is provided and decreased in leisure settings. It was repeatedly reported
that the AAC system was used most effectively in the instructional/ therapy setting and
not used effectively or at all in natural settings. Murphy et al. (1996) also reported
inconsistent availability of the AAC system across different settings.
The presence of AAC trained communication partners has a profound effect on
successful communication for an AAC user. “…informal partners tended to anticipate
users’ needs (sometimes mistakenly) and at times did not see the need for the AAC
system thus reducing the necessity and the motivation to use it” (Murphy et al., 1996,
p.37). Another factor that may influence an AAC users’ motivation to use their system is
accessibility. Motivation can be reduced if the user cannot operate their device without
37
relying on a communication partner to prepare it for them, for example switching the
device on or getting it out of their bag (Murphy et al., 1996).
Limited experience or expertise of professionals prescribing and supporting
implementation of AAC may lead to problematic clinical practices (Balandin et al., 1998).
In turn, this may lead to lack of success or inappropriate abandonment of
communication systems that cannot be adequately supported by trained professionals.
In addition to financial losses, abandonment can have a significant impact on the AAC
user and their family. If their experience with AAC technology is negative they may be
less likely to try any new technology in the future, which may impact on their
independence, participation and general quality of life (Pendergrass & Vestal, 2002).
It is apparent that many factors can lead to success or abandonment in AAC. It is also
clear that ongoing professional support across communication contexts and training with
multiple communication partners will provide the best AAC outcomes.
38
14. Evidence Based Practice in AAC There is increasing evidence in the field of AAC practice (Blackstone et al., 2007).
However, there is little documentation to describe how decisions are currently made in
this area. Schlosser and Raghavendra (2004) state that “most decisions are based on
practitioner familiarity, clinical reasoning from experience, practices promoted in
continuing education/ professional development activities, discussion with colleagues
and some use research evidence” (p.2). An evidence based decision making framework
and definition is proposed.
“Evidence-based AAC practice is the integration of best and current research evidence
with clinical/educational expertise and relevant stakeholder perspectives, in order to
facilitate decisions about assessment and intervention that are deemed effective and
efficient for a given direct stakeholder.” (Schlosser & Raghavendra, 2004, p. 3.)
Hill (2004) also describes a model of evidence based practice to ensure professionals
fulfill their obligation to collect data and measure communication outcomes in AAC. This
evaluation and collection of data will in turn support clinical decision making and ensure
the goals of AAC are achieved. “By applying the principals of Evidence-Based Practice
(EBP) and performance measurement, clinicians can have a dramatic effect on
improving the quality of life for individuals with CCN and feel confident that they are
providing exemplary AAC services and supports” (Hill, 2004, p. 18).
Schlosser and Lee (2000) completed a review of AAC research to determine the
effectiveness of interventions in AAC. They concluded that “AAC interventions meeting
our exclusion criteria were demonstrated to be effective in terms of behaviour change,
generalisation and, to a lesser degree, maintenance.” (p.219). The importance of
considering generalisation and maintenance strategies at the beginning of the
intervention process was noted (Schlosser & Lee, 2000).
39
15. Summary There is a low incidence but high cost associated with the provision of AAC equipment
and the process for an individual to obtain an appropriate communication device is often
complex. In order to improve the effectiveness and capacity of the sector, it is necessary
to examine current practices in light of available information on service delivery models
used interstate and internationally. It is clear that developing AAC expertise among
professionals in WA is paramount to ongoing successful outcomes for AAC users. This
specialist level of professional expertise is required not only to assess and prescribe
AAC systems, but to ensure the ongoing support and success for AAC users, their
families and other communication partners. The sector can look to current research to
seek out methods to support AAC device success and reduce abandonment. The
literature suggests that in order to ensure successful outcomes for current and potential
AAC users, the sector must begin to adopt evidence based practices.
“…in AAC research, the end goal is not just the design and recommendation of AAC
devices, access methods, or outputs. Rather, AAC requires the concomitant attention to
communication content, communicative goals, enhancing social participation and social
networks, communicative self management and self-determination, technological
education, instructional strategies and AAC technologies and strategies.”
(Blackstone, Williams & Wilkins, 2007, p. 192).
40
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