1999 Conference Proceedings
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Augmentative And Alternative Communication (AAC) with the ALS
Pat Ourand, MS, CCC-SLP
23 Kirwin Court
Baltimore, MD 21234
410-661-8894 - voice
410-661-3031 - fax
This presentation will focus on the areas to consider when
evaluating individuals with progressive or other neurological
disorders. A variety of communication options, strategies and
techniques that are currently available for individuals will be
presented and discussed.
The presenter will provide examples of no tech and low tech,
as well as high tech systems of communication that have proven
successful. The session will also include video samples of a
variety of communication strategies currently being used by
individuals. As available, actual systems, devices, strategies
and techniques will be demonstrated throughout the session. This
demonstration will also include a variety of slides and videotape
ALS - A New Era
- JM Charcot discusses the features of ALS
- 1990s: rapid increase in understanding of the
- Riluzole (Rilutek) is the first drug approved by FDA with a
double-blind, placebo-controlled clinical trial. Found to inhibit
glutamate release. It seems to provide a statistically
significant advantage by reducing the relative risk of death by
ALS: Diagnostic Criteria from the World Federation of
Neurology El Escorial
- upper motor neuron loss
- lower motor neuron loss
- absence of other disease processes
- levels of diagnostic certainty:
- define, probable, possible
- Age at onset of symptoms is the full adult age range
- mean age: 55 years
- Gender is 1.5 : 1 males : females
- Incidence is 1-2 per 100,000
- Prevalence is 6 per 100,000
ALS Risk Factors
- Age (e.g., more rapid progression in the elderly)
- Gender (e.g., more prevalent in males)
- Trauma - no confirmed data
- Environmental factors - no confirmed data
Types Of Motor Neuron Disease
- Progressive muscular atrophy (PMA)
- Spinal muscular atrophy (SMA)
- Lower motor neuron (LMN)
- Primary lateral sclerosis (PLS)
- Upper motor neuron (UMN)
- Amyotrophic lateral sclerosis (ALS)
- Upper and lower motor neuron
- Progressive bulbar palsy (PBP)
- Bulbar onset of ALS
Types Of ALS
- Sporadic (SALS) with no family history
- Familial (FALS)
- FALS 1: autosomal dominant; chromosome 21, mutations of SOD 1
- FALS 2: autosomal recessive; chromosome 2
- FALS 3: autosomal dominant
An Interdisciplinary Team approach is critical in the
provision of AAC services for individuals with disabilities. The
team members may include, but are not limited to:
- Client, Family Caregiver
- Speech/Language Pathologist
- Medical Staff Occupational Therapy
- Physical Therapy
- Social Services
- Vocational Counseling
- Other Consultative Services
Considerations for technology solutions may include various
levels of technology. No technology (e.g., pointing / gestures /
sign language; Yes-No questions; eye gaze) is used at some point
with each and every individual. The use of low technology may
include, but is note limited to direct selection to a
word/alphabet board, direct selection to a object/picture board,
partner-directed scanning, row/column or column/row scanning;
category or color coding. The breakdown of high technology
usually considers either a dedicated system (e.g., speech output)
or multi-purpose system (speech and written output).
A systematic selection process can be incorporated whenever
consider technology-based solutions. The multiple steps of this
- Initial Interview
- Needs Assessment across environment (e.g., communications,
recreation/leisure, vocational/educational, environmental
control), partners (e.g., in-person, telephone, small group,
classroom), messages (e.g. quantity, quality) and/or modes (e.g.,
verbal, written, across phone lines)
- User Assessment addressing cognition, receptive and
expressive language, motor skills, and sensory Skills
- Interface Control Selection Process (e.g., direct selection,
Morse code, scanning, proportional control)
- Final System Analysis (e.g., dimensions, positioning,
portability, feedback, operating technique, flexibility,
Maximizing the user’s system is critical in the design
of an AAC configuration. By definition this means "accommodating
the system user by individualizing the selected interface device,
the system controller, and the environmental interaction to allow
the user to gain maximum benefit (output) from minimal input."
This requires that the educational professional possess
sufficient knowledge of the available equipment, as well as the
individualized needs of the user.
All AAC systems are multi-component communication systems
regardless of the simplicity of the design or limitations of the
output. These design features confirm that the AAC system::
- provides full range of communicative functions
- compatible with other aspects of the individuals life
- does not restrict communication partners
- useable in all environments and physical conditions
- does not restrict topic or scope of communication
- allows and fosters growth
- acceptable and motivating to user and others
System specific questions that can be asked by clinicians
recommending, or consumers utilizing AAC include:
- Does it have immediate application & utility?
- Is it comfortable to use?
- Is there a way for me to independently turn it on and off as
my motor abilities change?
- Can it be easily transported? If not, what is necessary to
transport the system? Do I need a mounting system? If so, where
do I get one?
- Can it work with other equipment I already own/use? If so, do
I need additional items to have the systems work together?
- Does the system allow for additional peripherals, such as
switches, expanded keyboards, etc., to be added as my needs
- How can I get funding for the system?
- Are used systems available for purchase?
- System Specific Questions
- Is there a lending program where I can borrow the system on a
long or short-term basis?
- How long does a system like this normally last?
- Is there someone in my area who can repair the system in a
timely manner if it breaks down?
- Will I need special training in order to use the system? If
so, does training come with the purchase of the system or will I
need to pay extra?
- Do my communication partners need special training? If so, is
it included with the purchase of the system or will they need to
- Who is responsible for delivering and setting up the system
after it arrives?
- What is the policy for returning the system if it does not
meet my needs over time?
- Are there warranties available? If so, is there a cost?
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