1. Translating Research into Practice in the Employment of People with Disabilities: The Motivation Factor and Stages of Change Steve Williams, MD Bethlyn Houlihan, MSW, MPH Jane Wierbicky, RN New England Regional SCI Center Boston Medical Center ACRM-ASNR Conference Sept. 30, 2006

2. Copyright 2006, NERSCIC Reproduction w/ permission only Learning Objectives Participants will be able to… 1.Describe up-to-date research on the employment of people with disabilities in terms of the extent of the problem, predictors of employment, and related factors. 2.Summarize qualitative research findings exploring the motivation of people with disabilities in employment- seeking activities using the Transtheoretical Model (aka “Stages of Change”). 3.Understand the role of motivation and Stages of Change in guiding further research, and in translating current research findings into effective interventions to better serve people with disabilities, particularly at-risk and hard-to-reach populations.

3. Copyright 2006, NERSCIC Reproduction w/ permission only Presentation Outline Existing Research: What We Know Translating Research Into Practice: Exploring Stages of Change in Relation to Motivation & Facilitators/Barriers to Employment Practice Recommendations & Future Directions for Research

4. Copyright 2006, NERSCIC Reproduction w/ permission only The Ongoing Problem of Unemployment in SCI 78.5% of unemployed < age 34 want to work –Only 29% looking for work (Krause, 2001) Employment rates –35% of people with disabilities (pwd) in paid work FT or PT (NOD Disability Survey, 2004) –Versus: 25% of people with SCI (pwSCI) (Krause et al,1999) Trends over time –1986 = 34% pwd employed –Subsequent 8 years = 5% decline –Rebound by 2004

5. Copyright 2006, NERSCIC Reproduction w/ permission only Impact of Being Employed on pwSCI More satisfied with life More active Fewer medical treatments More education Perception of fewer problems Higher overall adjustment (Yasuda et al, 2002, p. 180)

6. Copyright 2006, NERSCIC Reproduction w/ permission only Predictors of Employment: Personal Characteristics Years post-injury (more) Age (younger) Age at injury** (younger) Gender (male > female) Education level** (esp. African Americans; 16+ yrs= 95% worked post-injury) Race (Yr 3 > Yr 1) (Caucasians working more) Physical and mental health** Stamina ~Injury level Married (Yrs. 1&2 only) Yasuda et al, 2006 NOTE: starred items are strong predictors replicated in several studies

7. Copyright 2006, NERSCIC Reproduction w/ permission only Predictors of Employment: Job-Related Characteristics Able to return to pre-injury job –Professional occupation pre-injury = lower physicality –~75% need accommodation (Dowler et al, 1998) Physicality of prospective job –Shift towards administrative, clerical, finance Limited scope of job options presented/ available Hours per week: shift from full-time to part- time pre- to post-injury

8. Copyright 2006, NERSCIC Reproduction w/ permission only Other Related Factors Self-report barriers: (Castle, 1994 in Yasuda et al, 2002) –Transportation, lack of benefits, physical limitations –Employed: Lack of stamina & confidence; low morale –Unemployed: Lack of skills; need for retraining & help in finding new careers Considerations in improving work satisfaction: (Wehman et al, 2000 in ibid) –Employed: May need to change job or job structure (incl. duties, supervisor, hrs worked) –Unemployed (if employed): Ongoing health problems; transportation; disability benefits

9. Copyright 2006, NERSCIC Reproduction w/ permission only Other Related Factors (Cont’d) Vocational decision-making barriers (Krause & Anson, 1996 in Yasuda et al, 2002) –Lack of info about employment opportunities –Uncertainty (about abilities and in general) –Lack of knowledge of occupation types The above are related to gender, age, race, level of injury Return to work = dynamic process

10. Copyright 2006, NERSCIC Reproduction w/ permission only Questions for Discussion Are these factors correct in your experience? Are there others that should be included?

11. Copyright 2006, NERSCIC Reproduction w/ permission only Qualitative Employment Research at NERSCIC 1) Employment intervention for chronically unemployed: convenience sample; rehab as point of entry; weekly check-in; peer mentors; community linkages for referrals. 2) Employed/Unemployed focus groups to assess: facilitators/barriers, role of readiness/stages of change, & recommendations 3) Employment agency interviews

12. Copyright 2006, NERSCIC Reproduction w/ permission only Five Stages of Readiness to Change: 1) Precontemplation: Not thinking about change; May be resigned 2) Contemplation: Weighing benefits/ costs of behavior change 3) Preparation: Experimenting with small changes 4) Action: Taking a definitive action to change 5) Maintenance: Maintaining new behavior over time Conceptual model in public health, originally for addictions Rationale: Most interventions target those ready to change; 70% of smokers not ready to take action on own, so need interventions to increase readiness Stages of Readiness for Behavior Change (Zimmerman et al, 2000)

13. Copyright 2006, NERSCIC Reproduction w/ permission only Focus Group Description

14. Focus Group Analysis Stages of Change & Application to Employment

15. Copyright 2006, NERSCIC Reproduction w/ permission only Stages of Change in Employment: Pre-Contemplation

16. Copyright 2006, NERSCIC Reproduction w/ permission only Stages of Change in Employment: Contemplation

17. Copyright 2006, NERSCIC Reproduction w/ permission only Stages of Change in Employment: Preparation

18. Copyright 2006, NERSCIC Reproduction w/ permission only Stages of Change in Employment: Action

19. Copyright 2006, NERSCIC Reproduction w/ permission only Stages of Change in Employment: Maintenance

20. Copyright 2006, NERSCIC Reproduction w/ permission only Questions Does Stages of Change seem like a useful model? In what ways does it make sense to apply? What are its limitations?

21. Copyright 2006, NERSCIC Reproduction w/ permission only Resources/ Logistics Perceptions of Ability Individual Characteristics Disability & Health Skills Training & Education Information/ Knowledge Existing Services/ Programs Focus Group Analysis: Major Employment Domains IndividualLevel Community Level

22. Copyright 2006, NERSCIC Reproduction w/ permission only Individual Resources/ Logistics Transportation Financial Family support Time availability Accessibility of environment Personal care assistance Perceptions Individual --own ability --anticipated discrimination Employer & coworker response --disability- related --race-related --level of qualifications Individual Characteristics Interests Skill set Marital status Ability to initiate Disability & Health Physical and mental health status Age at injury Level of injury Self-care routine Cognitive ability Individual Level Domains

23. Copyright 2006, NERSCIC Reproduction w/ permission only Skills Training & Education Computer/Internet skills Job-seeking skills Training opportunities (interning) Educational status Information/ Knowledge Existing services/ programs Rights under the ADA Scope of job options Job physicality fit w/ personal ability Existing Services/ Programs Knowledge level of service provider Coordination of services Getting the “word” out School assistance ADA & other government policies/programs Scope of job options Benefits Community Level Domains

24. Copyright 2006, NERSCIC Reproduction w/ permission only Focus Groups: Top Factors Impacting Readiness Individual Level –“Motivated” w/ self esteem (Type A vs. Type B) –Young age at injury (<18 yrs old) –Interests in line w/ offered job options –Able to drive independently –Married –Home computer/ Internet access Community Level –Info not available re: future vocational options early on; benefits impact; job task fit w/ physical abilities; scope of job options to fit interests, incl. non-traditional & self- employment; existing services. (Barrier) –Outreach in years 1& 2 at home

25. Copyright 2006, NERSCIC Reproduction w/ permission only Individual Factors

26. Copyright 2006, NERSCIC Reproduction w/ permission only “Self-Motivated” Personality vs. “Free spirited”: Employed Group (Type A vs. Type B) The employed group described themselves as being self-motivated and persistent when asked what helped them become ready to find a job: “I was self-motivated...I had an inner resolve within me that I didn’t know existed until the going got tough.” “After my injury, I went right back to school and said I’m going to do this and that, and I just did it.” “I was fortunate to have a personality to seek out stuff.”

27. Copyright 2006, NERSCIC Reproduction w/ permission only Motivation: Unemployed Group Many in the unemployed group described themselves as more free spirited and exploratory, both in life and in their job choices pre-injury: “Before my accident...I just took jobs that would give me more time to play...work part-time and have some fun.” “Prior to my accident, I probably was on that same “odd job” path...working part time at a hospital, I would pretty much yell out the codes…And also I was DJ’ing weddings.” “Prior to my accident, I had no aspirations for schooling. I was doing physical labor, and that suited me fine.”

28. Copyright 2006, NERSCIC Reproduction w/ permission only Confidence in Job-Seeking w/ a Disability: Employed Group The employed group described gaining a sense of confidence to be ready to successfully seek out a job: “Confidence. It takes time to get confidence back and feel comfortable asking for the help you need.” “[I] had almost given up, went into [book store] and noticed they have an employee in a wheelchair...went right up and said ‘Can I have an application? I notice you have a disabled person working here.’ I was very bold about it.” “I find it’s all in attitude and how you portray yourself. Once people see you’re ok, then they’re ok.”

29. Copyright 2006, NERSCIC Reproduction w/ permission only Confidence: Unemployed Group The unemployed group was less confident overall, and felt that w/ an education, they can gain respect and confidence: “People judge you by what they see. It also serves as a barrier for myself because it makes me feel that there are less things that I am able to do, which may or may not be the case.” “Where there are ten other people that can do the job without [accommodations] … that’s going to be difficult to overcome. That’s probably my hang up more than someone else’s, or somebody on the other end hiring.” “I’ve always seen education as like a weapon…so that someone else can’t prevent me from getting an opportunity.” “First, I would like to get an education. That way, you get that respect. If you’re disabled, you need...that degree.”

30. Copyright 2006, NERSCIC Reproduction w/ permission only Diverging Experiences of Services: Employed Group The employed group expressed fewer barriers, and that available services greatly assisted w/ readiness: “I was encouraged to start working right away because [State Rehab Commission] wanted to get people working right away.” “...after college, I really felt all the doors were open to me and I had hope for a future—[State Rehab] helped me, helped me get my van, helped me find work. Really they were the ones that kind of started me on the path to rehab.” “...peer mentor, he called me out of the blue to see how I was doing. He said, ‘Have you contacted [State Rehab]?’ And he set up a meeting and that’s how it all started.”

31. Copyright 2006, NERSCIC Reproduction w/ permission only Diverging Experiences of Services: Unemployed Group Most in the unemployed group found few services available, little information, and few competent employment professionals: “You don’t get too much support out there, you know…I’m tired of [employment agencies] already. ‘I’ll call you back tomorrow….’ Five months after, they still didn’t call you back.” “A lot of agencies just want to get you to work, but they don’t tell you all the parts that are going to be affected after.“ “Small Business Administration...they are archaic! They had no idea how to start a computer-based company!”

32. Copyright 2006, NERSCIC Reproduction w/ permission only Limited Job Options & the Pigeon- Hole Effect: Employed Grp All in the employed group could return to previous job, or pre-injury interests in working w/ people, a good match w/ state vocational agency’s traditional focus on human service and disability advocacy job options. “I probably wouldn’t do something in this field probably if I wasn’t injured, but different things happen in life, and your path changes. But I would do something with people, I’m sure. (State Vocational Counselor) “After injury, I was home for quite a while, not knowing what I wanted to do with my life, but I knew I wanted to do something with people.” (Dir. Of Volunteer Svcs) “I always knew that I wanted to help people...I don’t really think my views changed much…” (Social Worker)

33. Copyright 2006, NERSCIC Reproduction w/ permission only Limited Job Options & the Pigeon- Hole Effect: Unemployed Grp For the unemployed group, who could not return to previous job, state voc. agency couldn’t individualize job options to match their alternative and/or exploratory job interests. This led to the “Pigeon-Hole Effect”. “There are jobs I could take...Wal-Mart or something—greeting...but c’mon. For me, I don’t feel like these are jobs that use me to my full ability of what I can offer…Will I be satisfied emotionally or mentally and will it provide for me financially?”

34. Copyright 2006, NERSCIC Reproduction w/ permission only Pigeon-Hole Effect: Unemployed Grp (Cont’d) “I’m working with [State Rehab] and they’re kind of pushing me towards a specific goal, a vocational goal, which is rehab counseling...one of my major concerns is that the opportunities that are out there are not visible enough, so I feel like I’m only left to go to school. That’s my only option.” “I didn’t go through [State Rehab] because I found them to be wanting to pigeon-hole you into a particular job... They’re not willing to step beyond the box to let somebody experiment with something different, something new.“

35. Copyright 2006, NERSCIC Reproduction w/ permission only What do Consumers Want at Each Stage? 1) PRECONTEMPLATION: Education in acute rehab about the reality of working & beginning steps to build future readiness (housing, transportation, etc.) 2) CONTEMPLATION: Wider scope of job options to fit skills, interests, and physical capabilities, incl. computer- based jobs; Job peer mentors

36. Copyright 2006, NERSCIC Reproduction w/ permission only What do Consumers Want at Each Stage? 3) PREPARATION: More readily accessible info (ex. Website portal); Coordination of existing service agencies; Training program for people with disabilities, including internships, to get experience to gain a better job; Regular networking lunches, not just for the job ready 4) ACTION: Networking opportunities; Computer-based jobs (& training)

37. Copyright 2006, NERSCIC Reproduction w/ permission only Employment Agency Interviews Compared to Focus Groups Differences (Overlooked by EA) Marital Status (Domain: Individual Characteristics) Age at Injury (Domain: Disability & Health) Call Right time/Right place (Domain: Existing Services/ Programs) Similarities Many Individual and Community Domain items from focus groups were echoed by employment agencies (EA)

38. Copyright 2006, NERSCIC Reproduction w/ permission only Employment Agency Interviews: Unique Recommendations Develop more effective ways for active outreach to SCI non-service seekers (who are not job ready); utilize existing approaches more Develop more community connections for referrals for those not job ready, incl. vocational counseling Recruit diverse staff as service providers to improve cultural competence & linguistic capacity Promote state vocational agencies--many individuals not aware of services provided Engage employers w/disability; > understanding

39. Copyright 2006, NERSCIC Reproduction w/ permission only Employment Agency Interviews: Unique Recommendations (Cont’d) Market to schools, pharmacy centers, hospitals, DMR, DMA, etc. Develop early intervention programs, provider fairs, and job training programs Focus not just on job skills, but job-related skills (“professionalism”) Focus more on pre-employment options for pre- contemplation, contemplation, preparation: volunteering, interning, self-assessment & evaluation Post-employment maintenance difficult; provide support to prevent absenteeism, etc.

40. Copyright 2006, NERSCIC Reproduction w/ permission only Applying Stages of Change In understanding case studies: NERSCIC & others To translate findings of public reports: Best Practices in State Government & Best Practices in Home-Based Employment To shape recommendations from NERSCIC findings & previous research for policy and intervention

41. Copyright 2006, NERSCIC Reproduction w/ permission only Future Directions of Research Further quantification of factors and effects of employment/unemployment, using Stages of Change paradigm Services used and most useful for behavior change at different stages Research: how to impact motivation & other psych factors ignored to date (Murphy et al, 2003) Survey to establish research priorities of pwd Use ICIDH-2 for common disability definitions Expand definition of successful outcomes: short- and long-term; change in readiness; matched to individual’s priorities

42. Copyright 2006, NERSCIC Reproduction w/ permission only Questions In your experience, what impacts a person’s readiness to begin a job search? What helps them to keep searching? Employment is a complex issue with many contributing factors. What priorities does the field need at this time?

43. Copyright 2006, NERSCIC Reproduction w/ permission only Acknowledgements This project was made possible through the National Institute of Disability & Rehabilitation Research Model SCI Systems Grant (Grant # H133N000024)

44. Contact Information Bethlyn Houlihan Bethlyn.Houlihan@bmc.org Ph: (617) 638-7380