2004 Conference Proceedings

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Sally K. Ecklund, M.A., CCC-SLP
Courage Center
3915 Golden Valley Road
Golden Valley, MN 55422
Phone: 763-520-0419
Fax: 763-520-0355
Email: sallye@courage.org

Courage Center and the ALS Association, Minnesota Chapter have combined their expertise and resources to provide services to individuals diagnosed with ALS throughout the state of Minnesota and designated areas. Funded through a major grant, the Hrbek-Sing Communication and Assistive Device Program provides a comprehensive array of communication, computer access and electronic aids to daily living technology and services including evaluation, speech-language pathology and occupational therapy, training in the use of assistive technology, and an extensive equipment loan bank.

Amyotrophic Lateral Sclerosis (ALS) is a neuromuscular disease that attacks the nerve cells and pathways in the brain and spinal cord, affecting all voluntary muscle action. In its late stages, it often leaves individuals totally paralyzed yet the mind remains unaffected. Because ALS often leaves individuals unable to use speech as a method of communication, the Hrbek-Sing Communication and Assistive Device Program was established in 1995.

A partnership to support people with ALS

The ALS Association, Minnesota Chapter and Courage Center have come together under a grant funded largely by Kent Hrbek, retired Minnesota Twins player. In September 1982, Edward Hrbek, Kent's father, died of ALS at the age of 53. Kent and his wife Jeanie are committed to ALS research and have raised hundreds of thousands of dollars for the cause. They played a major role in the establishment of the ALS Association Chapter in Minnesota, and serve as honorary chairs in the organization.

The ALS Association, Minnesota Chapter is a volunteer organization that provides technical and emotional support to individuals with ALS and their families; collects information about ALS, and disseminates it to individuals, families, health care professionals, and the general public; raises money for research and client services; and advocates the cause of individuals with ALS.

Since 1928, Courage Center has provided comprehensive rehabilitation, enrichment, vocational, independent living and educational services to adults and children with physical disabilities and sensory impairments. Headquartered in Golden Valley, Minnesota, Courage Center provides a broad array of services to individuals from metro and outstate areas.

Covered services

The Hrbek-Sing Program meets the changing communication and physical needs of individuals with ALS by helping them manage multiple communication-related issues and access to their environment. Services available include:

Speech-language therapy--individualized therapy with a licensed speech-language pathologist to address communication, or to train in the use of augmentative communication equipment Augmentative Communication, Computer Access and/or EADL Evaluation--comprehensive evaluation by a speech-language pathologist and/or occupational therapist to determine the most appropriate augmentative communication, computer access and EADL technology to meet the individual's current and future needs, and to determine the most advantageous form of access to the device; mounting of equipment may be included Equipment Loan Bank-free loan bank of augmentative communication, computer access and EADL equipment throughout the period of need; the ability to obtain equipment quickly without having to wait for lengthy third party payor prior authorization processes; ability to provide more appropriate/alternative equipment as client's abilities change.

Sally K. Ecklund, M.A., CCC-SLP, Program Coordinator will present an overview of the Hrbek-Sing Program, how it began and has evolved over the past eight years and provide descriptions of the technology available to clients served by the Program in addition to presenting a case study. Participants will learn the communication and daily living challenges faced by individuals living with ALS and how technology can and has helped them preserve independence as their abilities change.

The main topics of this presentation include:

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