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National Aphasia Association NAA

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					Aphasia Advocacy, Community Outreach
and Education: National Initiatives and
Personal Perspectives
Ellayne S. Ganzfried, M.S. CCC-SLP
Executive Director
National Aphasia Association

Blair Justice, Ph.D., NAA Board Member and Person with
   Aphasia
Rita Justice, Ph.D., Co-survivor

TSHA Convention
April 3, 2009
National Aphasia Association
(NAA)
NAA is a consumer-focused, not-for-profit organization
  that was founded in 1987 as the first national
  organization dedicated to advocating for persons with
  aphasia and their families. Resources include:
  The Aphasia Quiz on www.aphasia.org
  NAA Hotline (800-922-4622) helps over 4,000
  families a year.
  NAA National Registry links to over 440 aphasia
  US support groups.
  www.aphasia.org receives over 30,000 hits per
  month, potentially helping over 200,000 families a
  year.
NAA Resources, cont’d
 The Aphasia Handbook: A Guide for
 Stroke and Brain Injury Survivors and
 Their Families -- with its simple, illustrated
 design and practical, non-technical content –
 this award-winning, internationally acclaimed
 book is a user-friendly, easy-to-understand
 resource.
 Aphasia Bill of Rights adopted in 2006,
 available on www.aphasia.org
 Aphasia US Postage Stamp Campaign
 underway, details on www.aphasia.org
Aphasia Facts
 Aphasia is an impairment of a person’s ability
 to process language, but does not affect
 intelligence. The causes are stroke, head
 injury, brain tumor or neurological conditions
 Aphasia will impair ability to speak and
 understand others and most people with
 Aphasia experience difficulty reading and
 writing.
Aphasia Facts
 Over 1 million Americans struggle with the
 devastation of aphasia.
 There are over 200,000 new cases each year;
 the numbers are expected to rise as the
 population ages.
 Aphasia is more common than cerebral palsy,
 muscular dystrophy or spinal cord injuries,
 yet most people have never heard of it.
Aphasia Facts
 Lack of awareness and information is as
 devastating as disorder
 People with aphasia are at a
 disadvantage in today’s health care
 system where the ability to access
 resources is closely tied to the ability to
 advocate for oneself
Current and Future NAA
Initiatives
 Multicultural Task Force (MTF)
 Aphasia Awareness Training for
 Emergency Responders
 Revision of Aphasia Community Group
 (ACG) Manual
 Annual Regional Conferences
 Videoconferencing Project
Multicultural Task Force (MTF)
 Formed in September 2007
 Members reflect various settings;
 variety of languages/cultural
 experiences and expertise
 Monthly conference calls
Mission and Goals
The MTF’s mission includes the following
  goals:
1. To bring together the input from a
  multidisciplinary cohort of researchers
  and practitioners as well as people with
  aphasia to clinical practices.
Mission and Goals
2. To link research on aphasia in
  different languages and in individuals
  from different cultures to clinical
  practices.
3. To bring together the input from both
  national and international researchers
  and practitioners.
Mission and Goals
4. To collect and disseminate literature
  on aphasia in different languages and in
  individuals from different cultures
  among researchers, practitioners, and
  people with aphasia.
5. To be an active resource center for
  the national and international public.
MTF Accomplishments
 Creation of MTF web page
 Recruitment of multicultural state
 representatives
 Fostering the creation of multicultural
 support groups
 Press release on MTF and issues
MTF Accomplishments
 Newsletter articles on multicultural
 topics
 Translation of NAA brochure into
 Spanish, Greek, Chinese, Tamil,
 Portuguese, Hebrew, Korean , Russian,
 French and Arabic
 Revision of NAA Mission and Bill of
 Rights
MTF Accomplishments
 Application and consideration for grants
 Collaboration with related organizations
 and outreach to international aphasia
 community
Aphasia Awareness Training for
Emergency Service Providers
   Grant received from Christopher and
   Dana Reeve Foundation to fund
   project
   Training of Police Officers,
   Firefighters and EMTs in NY, NJ and
   CT
   Distribution and recognition of
   Aphasia Sticker
   Go National!
Revision of ACG Manual
 Original manual printed in 1995 as part
 of NIDRR grant project
 Emphasized value of ACGs since the
 NAA was established
 Insufficient number to meet needs
 Need for ACGs has become more
 urgent in the last decade
Revision of ACG Manual
 Survey sent in February 2009 to
 selected ACG facilitators
 35 responses received
 Information used to update manual
 Peer review of manual
 Manual posted to website
Annual Regional Conferences
 Expanding successful Speaking Out!
 conference format to offer more
 frequent, regional meetings
 Retain unique features of Speaking Out!
 in a one day conference
 Serve a wider community; eliminate
 physical and financial constraints
Annual Regional Conferences
 Conduct Needs Assessment
 Create Manual as a template
 Standard components of each
 conference
 1st scheduled for October 2009 in
 Toledo, Ohio
 Ramp up over next 5 years
Videoconferencing Project
 Use of webcams to facilitate
 participation in ACGs
 Multi-state collaboration
 Creation of Best Practices Manual
 Funding through grants
Personal Perspectives and
Local Initiatives
 Blair and Rita Justice-their story
 Clip from video “Living After Stroke:
 Conversations with Couples”
 Lack of local resources
 Grassroots effort to create aphasia
 center in Houston
Houston Aphasia Recovery
Center (HARC)
Mission Statement:
 The Houston Aphasia Recovery Center (HARC)
  exists to serve people with aphasia and their
  families by providing programs, education,
  advocacy and resources to eliminate the
  isolation endured when the ability to
  communicate is impaired.
Nothing is more important than being
  understood.
Houston Aphasia Recovery
Center (HARC)
Vision Statement:
To create a center where people affected
  by aphasia and their families can come
  for conversation, recreation, support
  and information in order to once again
  fully participate in life.
Next Steps
 Advocacy Strategies
 Community Outreach Initiatives
 What you can do
 Collaborative efforts
 Wish List….
National Aphasia Association
National Aphasia Association
350 Seventh Avenue-suite 902
New York, NY 10001
(212) 267-2814
(212) 267-2812 (fax)
(800) 922-4622
www.aphasia.org
naa@aphasia.org
For more information contact:

Ellayne Ganzfried, M.S., CCC-SLP
Executive Director
ganzfried@aphasia.org

Amy Coble
Information/Administrative Coordinator
coble@aphasia.org
Blair and Rita Justice
ritajustice2@gmail.com
bjustice@uth.tmc.edu

HARC-”Drop in” Aphasia Conversation
 Group-Mondays 10:00-11:30 AM
Call Jeremy Lunsford for more information:
  713-743-2898