Takin It to the Streets: Aphasia Community Education and Advocacy

1
Takin It to the Streets Aphasia Community
Education and Advocacy

• Authors
• Laura J. Glufling-Tham, MS, CCC/SLP Emerson
  College
• Jerome Kaplan, MA, CCC/SLP Boston University
• Marjorie Nicholas, Ph.D., CCC/SLP MGH Institute
  of Health Professions
• Therese ONeil-Pirozzi, Sc.D., CCC/SLP
  Northeastern University

2
General introduction

• Aphasia advocacy and community education occurred
  in June 2006 at the National Aphasia Association
  Speaking Out Conference in Boston.
• Speaking Out is bi-annual conference
  co-sponsored by NAA and at least one local
  graduate program or rehabilitation facility
• This conference is unique in that it welcomes
  professionals, persons diagnosed with aphasia and
  significant others.

3
Role of persons with aphasia at the conference

• At the NAA Speaking Out Conference, the
  overriding goal was for persons with aphasia to
  have integral roles during pre-conference
  planning and during the Conference itself.

4
Goals for session

• Overview of our project and discussion of social
  approaches with persons diagnosed with aphasia
• Discussion of the ways persons with aphasia were
  involved in education and self-advocacy
• Description of the students activities with
  reference to revised ASHA standards and Scope of
  Practice
• Lessons learned from the experience what worked
  and what could be improved
• Video commentary by two people with aphasia who
  were involved in the project

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Role of persons with aphasia at the conference

• Following the WHO-ICF Model (WHO, 2001), each
  person with aphasia maximized his or her
  communicative effectiveness and activity level
  and participation level before and throughout the
  conference.

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Role of persons with aphasia at the conference

• The theoretical framework supporting our
  conference efforts emphasized the tenets of the
  Life Participation Approach to Aphasia (LPAA)
  and other social approaches to intervention for
  aphasia (Chapey et al., 2001)

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LPAA Core Values

• The explicit goal is enhancement of life
  participation.
• All those affected by aphasia are entitled to
  service.
• The measures of success include documented life
  enhancement changes.
• Both personal and environmental factors are
  targets of intervention.
• Emphasis is on availability of services as needed
  at all stages of aphasia.
• Chapey, R., et al. (2001). Life participation
  approach to aphasia A statement of values for
  the future. In Chapey, R. (ed.) Language
  Intervention Strategies in Aphasia and Related
  Neurogenic Communication Disorders, 4th ed.

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Role of persons with aphasia at the conference

• Roles included
• Pre-conference planning
• Staffing the registration table
• Speaker introductions
• On-site staff education

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Role of persons with aphasia at the conference

• Pre-conference
• persons with aphasia served on various committees
  and were integral members of the planning and
  organization of the conference

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Role of persons with aphasia at the conference

• Conference Hotel Staff education
• one gentleman with aphasia spoke to hotel
  management and staff about
• what it is like to have aphasia
• communication suggestions and strategies to
  maximize communication/interaction

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Role of persons with aphasia at the conference

• Staffing the registration table
• several persons volunteered to help at the
  registration table with a variety of tasks,
  including
• Conference registration
• Selling T-shirts
• Setting up and breaking down displays

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Role of persons with aphasia at the conference

• Speaker introductions
• Each person with aphasia utilized a variety of
  communicative means to convey information about
  the speaker, the session, and themselves at each
  session
• Each person with aphasia met with his/her
  assigned speaker prior to the session
• Persons with aphasia who completed the
  introductions had been diagnosed with a various
  types of aphasia and severity levels
• One gentleman utilized his augmentative
  communication device (pre-programmed) to complete
  his personal introduction and the introduction of
  the speaker

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Video clips of speaker introductions
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Impact of having persons with aphasia as integral
members

• Impact
• Afforded the person with aphasia an opportunity
  to be an active and integral participant in the
  conference
• Served as an inspiration and model for others
  with aphasia
• Allowed self-advocacy about living with aphasia
  to occur
• Empowered laypersons to communicate more
  successfully and more comfortably with persons
  with aphasia

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Video clips of persons with aphasia their
statement re participation in conference.

• First clip

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Video clips of persons with aphasia their
statement re participation in conference.

• Second clip

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Graduate students role

• Collaboration among four Boston area
  Communication Sciences and Disorders programs
  occurred
• Boston University Sargent College
• Emerson College
• MGH Institute of Health Professions
• Northeastern University
• This was a unique opportunity for students
• To work together for aphasia education and
  advocacy
• To demonstrate how professionals and persons with
  aphasia can work collaboratively towards a common
  goal

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Graduate students role

• Recently, ASHA revised the standards for graduate
  study (ASHA, 2005) and our Scope of Practice
  (ASHA, 2001).

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Graduate students role

• Impact
• Graduate students are now required to demonstrate
  knowledge and skill across a wider array of
  areas, including
• Prevention
• Education
• Advocacy
• Oral presentation skills
• Written presentation skills

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Graduate students role

• All of the graduate students who participated in
  the conference followed appropriate practice in
  the areas outlined.
• In addition, this experience broadened their
  professional development and allowed for
  application of knowledge learned in class to
  real-life settings.

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Student responsibilities

• Responsibilities included
• Meeting with a person with aphasia to help
  prepare an introduction for a speaker at the
  Conference
• Creating an aphasia brochure to be distributed to
  local businesses
• Organizing a slide presentation for the hotel
  management and staff at the hotel where the
  conference was to be held
• Visiting area businesses to educate them
  regarding aphasia and communication strategies

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Student responsibilities

• Meeting with a person with aphasia
• Each student was paired with a person with
  aphasia at a pre-conference meeting
• The pair also scheduled additional meetings to
  prepare and practice the speaker introductions
• The person with aphasia introduced him/herself at
  the outset of each talk and completed the
  introduction.
• The paired graduate student served as an
  assistant and provided guided help as needed, for
  example, using
• Scaffolding
• Scripting
• Supported conversation strategies

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Student responsibilities

• Creating an aphasia brochure
• The students met with one supervisor and created
  an aphasia brochure to be distributed to area
  businesses.
• The students identified topic areas and key
  information deemed important, including
• What aphasia is
• What communication impairments may be present in
  someone diagnosed with aphasia
• In what ways a layperson could assist a person
  with aphasia to communicate

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Student responsibilities

• Creating an aphasia brochure (continued)
• Students pulled from knowledge learned in class
  and in clinical experiences to generate these
  topics and tips
• Students designed the layout with graphics and
  distributed these to area businesses (see later
  slide)

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Aphasia Brochure

• booklet community ed.doc

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Student responsibilities

• Organizing a slide presentation for the hotel
  management and staff
• Again, students utilized information learned in
  class and from clinical experiences for the
  presentation
• One student was paired with a person with aphasia
  and served as an assistant/guide while this
  gentleman explained what it was like to live with
  aphasia and ways in which hotel staff could
  communicate more effectively with attendees.

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Student responsibilities

• Educating area businesses
• Two students were paired and assigned 2-3
  businesses
• Students distributed the brochures to restaurants
  and convenience storesplaces where persons with
  aphasia might be likely to visit
• Students met with management at each
  establishment 1-2 weeks prior to the conference

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Accomplishments

• Increased visibility and understanding of aphasia
• Improved interaction between laypersons, persons
  with aphasia, students, and professionals
• Increased confidence and self-advocacy by persons
  with aphasia
• Increased knowledge of prevention activities to
  reduce communication breakdowns
• Improved comfort for both survivors and families
  interacting with businesses
• Improved student oral/written presentation skills

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Replicability and Generalizability

• Persons with aphasia
• Increase involvement with educational conferences
  through
• Volunteering
• Speaking
• Increase education activities and self-advocacy
  through
• Serving as peer counselors
• Speaking in academic settings to educate students
• Discussing life with aphasia during May is Better
  Speech and Hearing Month or Aphasia Awareness
  Month in June

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Replicability and Generalizability

• Students
• Complete prevention activities across the life
  span and type of communication disorder
• Staff a booth
• Create a brochure
• Make a pamphlet
• Encourage involvement in community education
  projects
• May is Better Speech and Hearing Month
• Aphasia Awareness in June
• TBI awareness in October

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Replicability and Generalizability

• Professionals
• Involve the patients/clients you work with in
  local conferences
• Speaking
• Staffing/volunteering
• Ask patients/clients you work with to speak to
  your classes or staff about what it is like to
  live with a communication disorder
• Complete prevention activities

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• We hope you will also
• take it to the streets.
• THANK YOU
• QUESTIONS