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Augmentative And Alternative Communication (AAC) with the ALS Population

Pat Ourand, MS, CCC-SLP
23 Kirwin Court
Baltimore, MD 21234
410-661-8894 - voice
410-661-3031 - fax
e-mail: Pourand@home.com

Abstract:

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 presentations.

Handouts:

ALS - A New Era

• JM Charcot discusses the features of ALS
• 1990s: rapid increase in understanding of the pathophysiology
• 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 21%.

ALS: Diagnostic Criteria from the World Federation of Neurology El Escorial

• upper motor neuron loss
• lower motor neuron loss
• progression
• absence of other disease processes
• levels of diagnostic certainty:
• define, probable, possible

ALS Demographics

• 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 gene
• 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
• Engineering
• Education
• Psychology
• 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 process include:

• 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, expandability)

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
• effective
• allows and fosters growth
• acceptable and motivating to user and others
• affordable

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 change?
• 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 pay extra?
• 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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