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Identification of Existing Resources
Communication becomes increasingly challenging with progression of the disease,
ultimately resulting in the patient's inability to use speech or motor movements.
Therefore, establishing communication strategies early in the course of illness
will improve communication at the end of life. There are many different assistive
devices to aid in communication, and these are listed in Appendix
D.
Identification of Existing Gaps
Some patients may not have access to a speech-language pathologist (SLP),
particularly one with expertise in augmentative and alternative communication
(AAC). Speech-language pathologists help direct patients to appropriate technology
to aid in communication. Many health care providers are unaware of the technology
available to help with speech and communication.
Some speech-language pathologists may not have adequate experience or specific
training and preparation to handle patients with ALS in need of augmented communication.
There is a lack of adequate funding to pay for the evaluation, to purchase the device and to train the patient to use the device. The current documentation
process for funding augmentative communication devices is too lengthy and complicated
and generally falls outside the limited time patients with ALS have to use
such devices. The use of augmentative devices at the end of life has not been
studied.
Recommendations to the Field
Practice Recommendations
- The ALS Peer Workgroup calls on the AAN Quality Standards Subcommittee
to initiate the second Practice Parameter Guideline in ALS and address
management of communication impairment in ALS.
- Improve content of existing
Web sites and educational materials about
communication for patients and families, including printed materials such
as brochures and booklets.
- Educate health care providers about what resources
are available for patients and their families (facilities, reimbursement
and health care
coverage). This can be done at national meetings (courses and lectures),
independently sponsored courses and conferences.
- Establish training curricula
accredited through ALSA/MDA that require a minimal level of expertise among
clinic staff in assistive technology use
and other communication initiatives.
- Require augmentative and alternative
communication (AAC) expertise of interdisciplinary ALS clinics (by the
supporting patient advocacy organizations-ALSA
and MDA).
- Create regional centers that could provide AAC evaluation, loans
of devices and post-placement training of patients and families.
- The American
Speech Language and Hearing Association's (ASHA) Special Interest Division
on Augmentative and Alternative Communication should create
a list of certified speech-language pathologists (SLPs) with a minimum number
of years of experience in the provision of services to the AAC population
and proof of continuing education credits in AAC.
Research Recommendations
- Identify problems of acquisition and utilization of AAC.
- Define the impact
of inability to communicate on quality of life and interaction with health
care providers. Determine the effectiveness of
AAC intervention for individuals with ALS and its impact on quality of life.
- Determine
whether AAC prevents or reduces caregiver burden and to what extent. Examine
if the effect of AAC intervention makes a positive change
in the domains of functional limitation, disability and societal limitations
according to the World Health Organization (WHO) framework.
Policy Recommendations
- Third party payers must provide adequate reimbursement for Speech-language pathologists to
evaluate and train patients who need assistive communication devices.
- Third
party payers other than Medicare and Medicaid, especially HMOs, must add
assistive communication devices as a covered benefit.
- Third party payers
must streamline documentation requirements for assistive communication
devices.
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