The Continuum of Services for Persons with Aphasia The Aphasia Community Friendship Center (ACFC)

Lynn L. Chenoweth, MT-BC, NMT FellowUMAP Music Therapist-Board CertifiedACFC Executive Director

Sally Jakeway, MA, CFY-SLPIntegrity RehabACFC Volunteer

MSHA March 21, 2013

Learning ObjectivesParticipants will learn about:

U.S. Aphasia Centers Historical Review

Life-Participation Approach to Aphasia (LPAA) A Social Model of Care for PWA.

Aphasia Centers (Nationwide, Michigan, PWA) Needs-based Data

Aphasia Community Friendship Center (ACFC): FACTS

Research Study: How Participation in Aphasia Groups Influences Perception of Aphasia.

ACFC for PWA, Caregivers, & Volunteers Opportunities & Outcomes

NEXT STEPS for PWA: SLP Referral Opportunities:

Blueprint for a Community-Based Aphasia Center - an advocacy project

PROGRAM OUTLINE

● Aphasia Centers - Brief History● Aphasia Centers - Needs-Based Data● ACFC Purpose, Vision, Core Values● ACFC Philosophy● LIfe-Participation Approach to Aphasia (LPAA)● ACFC History, Mission Statement, FACTS● ACFC Newsletter In Our Words● Research Study: How Participation in Aphasia Groups

Influences Perception of Aphasia● ACFC Outcomes: PWA, Caregivers, Volunteers● ACFC Community Aphasia Education Initiative● Blueprint for a Community-based Aphasia Center

APHASIA CENTERS . . . A Brief HistoryResource: Roberta Elman, PhD - June 2012

1947 1979 1989

1996 2001 2002

2003 2008 2010

APHASIA CENTERS NEED-BASED DATA(Resource: Lingraphica 2007)

INCIDENCE of Aphasia in U.S. 2007 - 80,000/yr.

2020 - 180,000/yr. (projected figure)

PREVALENCE of Aphasia in U.S.

2007 - 1,000,000

2020 - 2,000,000 (projected figure)

ACFC Need-Based Data(Resource: Michigan Department of Community Health 2005)

INCIDENCE of Strokes in MI (2005) 200,000

FACT: 25% - 40% of Stroke Survivors Acquire Aphasia - (NAA - 2008)

MI (2005): New Stroke Survivors with Acquired Aphasia ~ 50,000 - 80,000

ADDITIONAL NEEDS-BASED DATASurvey of PWA

PWA following discharge from speech therapy stated that they felt . . . ● they had maxed out the potential for recovery.● they were leaving the safety net of a meaningful 1:1

therapeutic relationship.● alone and lost without the structure once provided by therapy

schedules.● they did not have a clear vision as to how to continue the

journey to recovery.● unsure of their ability to successfully use newly acquired

communication skills in unfamiliar social settings and their community.

ACFC PURPOSE

● To augment the current aphasia rehab services in Washtenaw County;

● To extend the Life-Participation Approach to Aphasia Rehab beyond the clinical setting.

ACFC VISION

The ACFC Vision was an aphasia-friendly environment that would . . .

● recognize & nurture the uniqueness of each participant.

● foster new friendships.● stimulate, motivate, and encourage conversation

and independence.● provide opportunities to participate in activities

of choice.

ACFC CORE VALUES

● DOING . . . Commitment to Life & Recovery

● EMPOWERING . . . Developing Relationships

● BELONGING . . . Community Connections

ACFC Person-Centered Philosophy

"Life takes on meaning in the minute-by-minute reality in which we experience ourselves achieving the ordinary things" (Gary Kielhofner, OT). . . thus, the belief that a person's Life Story continues to take on meaning despite the presence of aphasia and/or other neurologic impairments.

The Life Participation Approach to Aphasia The LPAA Project Group - Roberta Chapey, Judith Duchan, Roberta Elman, Linda J. Faria, Aura Kagan, Jon Lyon and Nina Simmons-Mackie:

● A Social Model of Health Care● Consumer-Driven● Person-Centered● Communication● Re-engagement in life . . . Activities of Choice● Relationships . . . Social Network● Environment . . . Aphasia-Friendly

ACFC HISTORY

● EMU Aphasia Advocate Project . . . 12/2005 ● IRS 501(c)(3) . . .July 5, 2009● ACFC Opened . . . January 17, 2010● ACFC Caregiver Support Group . . January 2012● Publicly identified as 1 of 8 non-profit,

independent community-based Aphasia Centers in the United States by Roberta Elman, PhD, CCC-SLP, A Brief History of Aphasia Centers, June 2012

ACFC MISSION STATEMENT(what . . . who . . . why . . . how)

. . . to provide an environment where persons with aphasia and aphasia-related communication disorders can continue to optimize their communication skills and enhance quality of life, regardless of their stage of recovery and/or ability to pay, through a variety of life-participation programs with support from professionals and trained volunteers.

ACFC IS NOT. . . . . . . .

● an alternative to individualized formal speech & language therapy.

● an alternative to an intensive aphasia program such as UMAP.

● a stroke support group.

● a respite program for caregivers.

ACFC IS . . . . . . .an adult 'drop-in' venue providing a safe, supportive environment in which to:

● practice newly acquired communication skills.

● engage in conversation with other PWA who can

empathize and understand.

● reclaim the voice & confidence to 'speak out'

again.

ACFC IS . . . . . . . . (continued)

an adult 'drop-in' venue providing a safe, supportive environment in which to:● enjoy a choice of activities ● access communication-related resources.● develop a meaningful circle of friends ● experience a sense of belonging.● feel ALIVE with purpose while living with the

challenges of aphasia.

ACFC FACTS: VOLUNTEER STAFF

ALL ACFC Staff are volunteers:

● Music Therapist, Art Therapist, LMSW, CCC-

SLP (social media consultant)

● NSSLHA Students (EMU)

● Community Advocates

● PWA (peer support)

ACFC FUNDING

ACFC is a 501 (c)(3) IRS recognized charitable organization. It is currently funded by:● participant fees.● private donations● fundraising effortsNo person is turned away for financial reasons. A sliding scale is available. There is NO CHARGE for a family's 1st visit to the Aphasia Community Friendship Center.

ACFC Participant Guidelineswww.aphasiacenterMI.org

Participants will . . . ● have communication disorder secondary to . . . .● demonstrate ability to use one or more methods

of communication● be oriented to person, place, & time.● be independent of ADLs or be accompanied by a

caregiver.● demonstrate appropriate social interaction with

other group members.● be alert and able to sustain attention for at least

one hour .

ACFC PARTICIPANTS 2013Profile

ACFC participants include stroke survivors and others with progressive neurologic conditions. They live with a variety of challenges:● Broca's Aphasia● Wernicke's Aphasia● Primary Progressive Aphasia● Progressive Supranuclear Palsy● Muscular Dystrophy● MCD

ACFC FACTS (continued)

LOCATIONHawthorn Suites3535 Green Rd.Ann Arbor, MI 48108

OPEN FRIDAYS 10:00 a.m. - 4:00 p.m.

CAREGIVER SUPPORT GROUP(1st & 3rd Fridays . . . 1:30 p.m. - 3:00 p.m.)

ACFC FACTS (continued)

Weekend Activities happen outside the Aphasia Center 'comfort zone'. . . . . . ● Blueberry picking

● Tiger baseball game

● Chain-of-Lakes boat tour

● U-M Museum of Art

● Picnics

● Restaurants

ACFC FRIDAY SAMPLER● Chit-Chat Cafe● Exercise w/ Music● Lunch & Conversation● Speaker Bureau Guest; Group Activity; Art

Therapy; Music w/ Kerry

● Individual & Group Activities of Choice● Conversation Group topic specific (i.e.

Presidential Election, Super Bowl, In Our Words newsletter, Aphasia Bill of Rights)

ACFC NEWSLETTERIN OUR WORDS

PURPOSE . . . to engage ACFC participants in group process; to provide each person with opportunities to present ideas autonomously, to assert communicative independence, to tap into the creative self, and to embrace the value of his/her message and the message of others in their own words.

ACFC NewsletterIn Our Words (continued)

TITLE: In Our Words

SCHEDULE Quarterly

CONTRIBUTING EDITORS ACFC participants

TOPICS Group discussion; Individual volunteers.

SUBMISSIONS Written or recorded dictation (transcribed).

EDITOR-IN-CHIEF 'Coach'; Layout; Transcriptions; Photos & more.

DRAFT REVIEW Contributing editors.

PUBLISHING Funded by private donations.

DISTRIBUTION SLPs in Southeastern MI, rehab centers, physicians, churches . . .

anywhere we can.

ACFC NewsletterIn Our Words (continued)

OUTCOME Participants have experienced an increase in

● Self-confidence & motivation to participate more fully in the group process.

● Self-actualization . . . awareness of the value of one's self.

● Appreciation of others and their creativity.● Responsibility for the project’s success.

Graduate Research Presentation

How Participation in Aphasia Groups Influences Perceptions of Aphasia

by Sally Jakeway, MA, CF-SLP

Eastern Michigan University, '12

How Participation in Aphasia Groups Influences Perceptions of Aphasia

Sally Jakeway

Thesis Chair: Sarah Ginsberg, Ed.D., CCC-SLPThesis Committee: Ana Claudia Harten, Ph.D., CCC-SLPJayne Yatczak, M.S., OTL

July 10, 2012

Purpose

●To understand how participation in aphasia support groups influenced how a PWA perceived his/her communication disorder

A Phenomenological Study

●Identifies thematic relationships based on the commonalities revealed through the coding of the data●Utilizes descriptive studies of human experience●Three perspectives were explored:

● the person with aphasia ● his caregiver/spouse/family member● his Speech-Language Pathologist

●Triangulation allowed for a cohesive interpretation of the data

Participation Criteria

●Open to males and females with aphasia secondary to stroke●Who participated in aphasia groups●18-99 years old●All socioeconomic and cultural backgrounds●All levels of physical and language abilities●Healthy enough to participate in the interview process

Data Collection

●Descriptive data was collected to substantiate the analysis:● personal interviews and interview transcripts● audio recordings● video recordings● and field notes

●All participants were informed:● Of the research procedures● Of voluntary nature of participation● That pseudonyms would be assigned

●Signed consent was obtained from each participant

The Interview

●Semi-structured using both open-ended and close-ended ●Supported Conversation Techniques (SCTs) included:

● Speaking slowly and directly to the subject● Using simple sentences● Printing key words● Yes/no questions● Providing pen and paper for the participant.

●Locations were determined by the participant

Findings: Themes

●Analysis revealed that participation in group settings helped affect change in their attitudes toward their aphasia.●Three major themes emerged from the narratives:

● Acceptance● Learning and Advocating● Setting Goals

The Participants

PWA Caregiver SLP

TravisLate 50s, 4 ½ yrs post stroke

none Mary

MikeLate 50s, 3 yrs post stroke

Josh, son Mary

WillEarly 80s, 1 ½ yrs post stroke

Beth, wife Susan

MartinLate 40s, 14 yrs post stroke

Laura, mother Dan

Feeling Accepted: “There’s Other Guys . . . the Way I Am”

●“The one place where that experience becomes something positive, and where the aphasia that is disrupting one’s life also gains one membership in this new community.” (Shadden & Agan, 2004, p. 180)●Acceptance in a group setting led to self-acceptance●Feelings of acceptance helped participants to live with their aphasia

Feeling Accepted: “There’s Other Guys . . . the Way I Am”

●“I knew I had a disorder. I had a stroke and aphasia. I had a disorder. I knew that. . . . I knew that I got to work on it.”

–Travis●“People think you had a stroke, you’re stupid because you can’t talk right. They think that means your mind’s not working right. My mind work fine. Problem is, what I want to say, I trouble saying it. My mind is doing right. I just have trouble saying it.” –Travis●“Sometimes when I go to a [store] or there places looking for something, and I couldn’t say it right and the guy looked at me like, ‘What’s your problem? What are you? Dumb?’ I can see the look. People that had stroke see the look.” –Travis●“All these people have different kinds of strokes. . . . All these people are fighters. They have not given up. I am too.”

–Travis

Feeling Accepted: “There’s Other Guys . . . the Way I Am”

●“A lot of people stand back. . . . They don’t want to talk to me.” –Mike●“Now I can understand what’s, what I am, and there’s other guys, other people . . . the way I am.” –Mike●“I’m a, I was a go, go, go person. But now I’m a ‘Hi, how are you?’ type person. . . . It’s a new life.” –Martin ●“I accepted it. Two things: I was stress, stress, stress, and now a different kind of stress.” He added, “But, it’s still I’m happy go lucky.” –Martin ●“Yes, of course he misses his old life. You think he’s going to say, ‘Oh, no. This is fine’? . . . He’s handling it.” –Laura

Learning and Self-Advocacy: “A One-Man Fighting Team”

●“Having information allowed people to start taking control and to participate in decisions about their own therapy and their own rehabilitation.” (Worrall et al., 2010, p. 314)●“[They are] becoming stronger advocates for [themselves], and stronger teachers with the public about aphasia.” –Mary

Learning and Self-Advocacy: “A One-Man Fighting Team”

●“This is a part of me and at times I’ll hold that [aphasia card] and I’ll hand it to people when I’m, because I’m have a problem.” –Mike● Mike has become “a one-man fighting team to get aphasia-friendly businesses.”

– Mary

Learning and Self-Advocacy: “A One-Man Fighting Team”

●“ I’m reaching out to any level that will at least help me to understand who I am, you know, what’s going on with me.” – Will ●“I think it helped them learn more and understand more about their own particular set of symptoms, what kind of aphasia they had, and where they were in changing types of aphasia in recovery.” –Mary

Goals: “Doing it for Myself”

●“Group interventions can target the sharing of life stories and provide a framework for linking past, present, and future in the lives of persons with aphasia post-stroke.” (Shadden and Hagstrom, 2007, p. 334)●“I’m doing it for myself. . . . There’s stuff I’m going to do. I’m not trying to prove anyone wrong. I do it for myself.” –Travis●“They get to talk about how they are trying to be someone different now, and what they are trying to do differently, and they support each other really wonderfully.” –Mary

Goals: “Doing it for Myself”

●“That’s the hard part of right now is finding another job because my change. I’ve changed and I’m not, I know who I am and what it is I have.” –Mike●“He’s apply[ing] himself to go do it. That’s good. . . . Now-a-days he’s going to have to take care of himself.” –Josh●“Their perception is ‘I sound terrible and I can’t talk to people and I don’t want to,’ and then they withdraw. I think an individual’s perception of their abilities really does affect their outcome, how they go back to the community. I think everyone’s different in their perceptions.” –Susan

Discussion and Conclusion

● Feelings of acceptance, continued learning and self-advocacy, and setting goals all pointed to how participation in an aphasia group affected change in the participants’ perceptions of their aphasia, helping them to learn to live with their aphasia.●“I don’t know if people ever accept their aphasia . . . I think they learn how to deal with it. They understand it better and they learn how to live with it.” –Mary

Implications

● Encourage the narrative experience from both the PWA and the caregiver● Recognize and promote the value of aphasia groups by encouraging participation & referring clients to available groups● Promote further investigation of aphasia groups

Limitations

● PWA participants were all male● Able to successfully communicate their narratives themselves without the use of augmentative technology or caregivers to answer for them● They were all living independently, and were ambulatory● Future Inquiry:

● Narratives from female stroke survivors● PWAs managing a greater range and severity of physical

limitations and language abilities.● PWAs representing various ages of onset and time

poststoke.● Family members and caregivers.

References

Bogden, R. C., & Biklen, S. K. (2003). Qualitative research for education: an introduction to theories and methods, fourth edition. Boston: Pearson Education Group, Inc. Merriam, Sharan B. (2009). Qualitative research: A guide to design and implementation. San Francisco: John Wiley & Sons, Inc. Shadden, B. B. & Agan, J. P. (2004, July-September). Renegotiation of identity: the social context of aphasia support groups. Topics in Language Disorders 24(3), 174-186.Shadden, B. B., & Hagstrom, F. (2007, October-December). The role of narrative in the life participation approach to aphasia. Topics in Language Disorders 27(4), 324-338. Worrall, L., Sherratt, S., Rogers, P., Howe, T., Hersh, D., Ferguson, A., & Davison, B. (2010). What people with aphasia want: their goals according to the IFC. Aphasiology 25(3), 309-322. doi: 10.1080/02687038.2010.508530

ACFC Outcomes: PWA, Caregivers, Volunteers

ACFC OUTCOMESPWA, Caregivers, Volunteers

Personal Testimonies

Video Clips

Slides

NEXT STEPS for PWASLP Referral Opportunities

● Encourage your clients to visit the ACFC.● Help your clients make a phone call to ACFC for

information i.e. schedule, location, cost.● Assist your clients to access and preview the

ACFC website.● Assist your clients to send an email to ACFC.● Include ACFC brochure & newsletter in your

discharge materials.

ACFC Community Aphasia Education and Awareness Program Initiative

● FIRST Responders (police, fireman, EMS)● Churches● Chamber of Commerce● Local TV stations● Senior Centers● Retired Lifelong Learning Programs● County Realtors' Association● Banks● Secretary of State Offices

Blueprint for a Non-Profit Community-Based Aphasia Center

. . . an advocacy project . . . BASIC NEEDSA Plan w/ a purposePassionPatiencePerseveranceParticipants . . . and . . . $$$$$$$$$

RESOURCESNonprofit Enterprise at Work, Inc (NEW) - Ann Arbor, MI Wonderful resource; offers inexpensive workshops; great materials. ONLINE Resource: Basic Infrastructure Checklist . . . for registered nonprofit organizations in Michigan

Blueprint for a Non-Profit Community-Based Aphasia Center

. . . . an advocacy project (cont.). . .

STEP 1 . . . GETTING STARTED

Visit U.S. Aphasia Centers Online

Seek Community Needs-based Data

Compose Mission Statement Identify: Purpose,

Core Values, Goals, Profile.

TEST THE WATERS

Blueprint for a Non-Profit Community-Based Aphasia Center

. . . . an advocacy project (cont.). . . STEP 2 . . . DON’T LOOK BACKBoard Profile & RecruitmentBy-Laws; Articles of IncorporationProgram Description; Budget ProposalStaff Job DescriptionsAttorney - 501(3)(c) application (IRS)Location; Logo; WebsiteRegister Aphasia Center with NAARegister Non-profit with State of MichiganBusiness Supplies; Program MaterialsBrochures & Business CardsMarketing Plan; FundraisingVolunteer Orientation & TrainingComputer; IPad

RESOURCES