2000 Conference Proceedings
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ASSISTIVE TECHNOLOGY INTERVENTION FOR INDIVIDUALS WITH
Barbara Phillips, MS OTR, ATP
Molly Doyle, MS CCC, ATP
Las Floristas Center for Applied Rehabilitation Technology
Rancho Los Amigos National Rehabilitation Center
Downey, California 90242
The goal of this presentation is to inform service providers
of the unique implications of providing assistive technology
(AT) to individuals with amyotrophic lateral scelerosis (ALS).
Emphasis will be placed on the key role of the
interdisciplinary team while performing assessments, teaching
individuals and care providers to use AT, and the importance of
follow-up services. The course will focus on strategies to
accommodate for decline in functional status. The presenters
will address the following technology areas: augmentative
communication, computer access, electronic aids to daily living
and AT integration, and will also touch upon seating and
mobility issues. Several case studies will be presented.
Amyotrophic lateral sclerosis (ALS) is an adult onset,
progressive neuromuscular disease which affects all aspects of
daily living. There are different manifestations of ALS
however, all persons diagnosed demonstrate debilitating muscle
weakness which results in a steady decline in functional
status. The rate of progression varies from person to person.
Individuals with ALS can benefit from a range of assistive
technologies during all phases of the disease. Existing devices
often need to be adapted or new devices introduced to
accommodate for the progressive loss in function.
Individuals with ALS typically receive an initial AT
evaluation and then are followed through the course of their
disease. During the evaluation, the individual’s current
functional status and needs are assessed. Anticipated changes
in future function and needs are addressed prior to prescribing
assistive devices. Upon receipt of the recommended equipment,
return visits to the clinic are scheduled to address the issues
of set-up and training. Subsequent contacts are indicated to
ensure that the recommended technology continues to meet the
individual’s needs. If a client is unable to attend a
follow-up session, modifications and trainings are done in the
home or with care providers.
The presentation will be based on the interdisciplinary
approach used at CART and will follow several clients through
the process of initial evaluation, equipment recommendations
and acquisition, training, follow-up and on going equipment
modifications. Additional discussions will address two areas
essential in successful AT application with ALS populations:
how special collaborations fostered in the community maximize
the quality of services provided and how response to the
progressive nature of the disease has resulted in the need to
alter the AT intervention process including the features that
facilitate functional use. Case studies will be used to
highlight these issues.
Kazandjian, S. Marta: Communication and Swallowing Solutions
for the ALS/MND Community. Singular Publishing Group, Inc.
Miller, M., Robert, Strand A., Edythe, & Yorkston, M.,
Kathryn. Management of Speech and Swallowing in Degenerative
Diseases. Arizona: Communication Skill Builders. 1995.
Gallegher, J. P. Pathologic laughter and crying in ALS: A
search for their origin. Acta Neurologica Scandinavica. 1989;
80(2):114-17. Montgomery, G.K., and L.M. Erickson. 1987.
Neuropsychological perspectives in a amyotrophic lateral
sclerosis. Neurological Clinics 5(1):61-81.
Blackstone, Sarah. Augmentative Communication News. (January -
February 1998, March - April 1998. Volume 11, Number 1 and 2.
Cedarbaum, M., Jesse, Charatan, Matthew, Stambler Nancy, &
the ALS CNTF Treatment Study Group. Prognostic indicators of
survival. 1998. Alderson, M.K., MD; Almada, A.; Brinkmann,
J.R., MS; Bryan, W., MD; England, J.D., MD; Gappmaier, E., MS;
Graves, J., MS; Herbelin, L.; Lee, M.Y., MA; Mendoza, M., MS;
Miller, R.G., MD;MS; Smith, P.; Murphy, J.R., PhD; Mylar, D.,
Petajan, J.H., MD; Ringel, S.P., MD; Roelofs, R.I., MD; Smith,
S.A., MD; Yu, P.; &Ziter, F.MD. The natural history of
Amyotrophic lateral sclerosis. Neurology 1993.
Hillel, A., Miller, R., Yorkston, K., McDonald, E., Norris, F.
& Konikow, N. (1989). ALS Severity Scale. Journal of
Neuroepidemiology. 3: 142-150. Yorkston, K., Strand, E.,
Miller, R.n Hillel, A.m Smith, K. (1993). Speech deterioration
in amyotrophic lateral sclerosis: Implications for the timing
of intervention. Journal of Medical Speech-Language Pathology.
Carroll-Thomas, S. (1995). Communication changes and challenges
in ALS?MND. Journal of Speech -Language Pathology and
Audiology: 19:4, 281-282.
ALS Web site
ALS Association: http://www.alsa.org
ALS Association, Greater Philadelphia Chapter: http://www.als-phila.org/
MDA/ALS Clinic at Baylor College of Medicine:http://www.bcm.tmc.edu
Led Turner Amyotrophic Lateral Sclerosis Foundation:http://www.familyvillage.wisc.edu/lib_als.htm
ALS Association, Greater New York Chapter:http://www.als-ny.org/
Family Caregiver Alliance Fact Sheet - ALS: http://www.caregiver.org
ALS/MND on the World Wide Web: http://http1.brunel.ac.uk:8080/~hssrsdn/alsig/als_rsrc.htm
ALS - MND - Motor Neurone Disease Association - UK:http://www.alsmndalliance.org/,
ALS Society of Canada: http://www.als.ca
ALS Society of British Columbia: http://www.freenet.vancouver.bc.ca/als/
World Federation of Neurology - ALS Web Page: http://www.wfnals.org
ALS March of Faces:http://hometown.aol.com/alsmof/index.html,
Ride for Life - ALS News & Information:http://www.rideforlife.com\
The ALS C.A.R.E. Project: http://www.outocmes.org/als/
The ALS Survival Guide: http://www.lougehrigsdisease.net
Doctor D. Eric Livingston=s patient=s guide to ALS:
http://www.phoenix.net/~jacobson/pages/guide1.html ALS News -
Muscular Dystrophy Association:http://www.mdausa.org/publications/alsnews.html
Yahoo! Message Board for ALS has beeb started on Yahoo!-From
the Yahoo! Main Page, go to HEALTH Disease. When the next page
comes up, select Message Boards. When the next page comes up,
select Message Boards. When the Message Boards page come up,
select Alphabetical listings. Find ALS and click on it.
Family Caregiver Alliance Fact Sheet: ALS:http://www.caregiver.org
Ride for Life - ALS News and Information: http://www.rideforlife.com
The ALS Survival Guide: http://www.lougehrighsdisease.net
ALS News - Muscular Dystrophy Association: http://mdausa.org/publications/alsanews.html
ALS Resources (Communication Aids, Links, etc.):Http://www.speakeasily.com/alslinks.html
The national Library of Medicince has sites that allow you to
search published medical literature. MEDLINEplus: http://nlm.nih.gov/medlineplus/
ALS Digest. This is an ALS Interest Group?s weekly newsletter
with over 3050 subscribers. Bob Broedel is the editor. E-mail
email@example.com to subcribe.
ISAAC. The International Society for Augmentative and
Alternative Communication Web site has information about the
organization, national chapters, AAC (the Journal),
conferences, direct links to manufacturers and an interactive
University of Nebraska-Lincoln. The Barkley Center website is
rich with resources. Check out the Case Study of Mr. Scott, a
man with ALS who uses Vision Key. Thom Jakobs did a nice job
describing the process of equipment selection and its impact.
Applied Science Engineering Laboratory. ALS Web site at the
University of Delaware http://www.asel.udel.edu/rerc-aac
Stephen Hawking’s site http://www.damtp.cam.ac.uk/user/hawking/home.html
Assessment/ Prognositic Tools
Archives Neurology Bo 53 Feb 1996, pgs 141-147 The Amyotrohic
Lateral Sclerosis Functional Rating Scale
Journal of Medical Speech-Language Pathology, 1993, 1(1):35-46
Yorkston, K.M., E.Strand, R. Miller, A. Hillel, and K. Smith.
1993- Speech deterioration on AlS: implications for timeing of
intervention Neurology, 1986; 38:937-41 Andres, P., et al.
1986, Quantative motor assessment in amyotrophic lateral
Neurology, 1992; (43) 1316-1322 Ringel, S.P., et al. The
natural history of amytrophic lateral sclerosis
Mulder, Donald editor; 1980 The Diagnosis and Treatment of
amyotrophic lateral sclerosis, pgs 171-192.
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Reprinted with author(s) permission. Author(s) retain copyright.