Promoting Excellence : ALS Report to the Field : Speech and Communication

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†∑ Executive Summary
†∑†Report to the Field
†∑†Appendices


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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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.

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