1. Multiple Sclerosis: Medical and Psychosocial Aspects, Impact on Career Development, and Implications for Rehabilitation Counselors Phillip D. Rumrill, Ph.D., CRC Kent State University

2. Multiple Sclerosis (MS) One of the most common neurological disorders in the world Characterized by lesions in the central nervous system (brain and spinal cord) Destroys the myelin sheath that covers nerve tissue Symptoms are determined by location of lesions

3. Unique Features of MS Onset in early-middle adulthood Range of symptoms Capricious disease process High incidence among women Presence of cognitive impairment Normal life expectancy Impact on career development

4. 4 History, Risk Factors, Causes Dates back to 14 th Century Affects as many as 1/2 million people in the United States Most common among women of European descent (2/3 people with MS are women) Cause thought to be a combination of environmental, genetic, and auto- immune factors

5. 5 Courses and Progression Relapsing-Remitting MS Clearly defined flare-ups & recovery periods Primary Progressive MS Slow and steady decline in functioning Secondary Progressive MS Relapsing-Remitting  progressive Progressive Relapsing Steady, progressive decline with relapses

6. 6 Diagnosis McDonald Criteria Magnetic resonance imagining (MRI) Positron emission tomography (PET) Predict: frequency, duration, & intensity

7. 7 Physiological Effects Fatigue Deconditioned Fatigue Short-Circuiting MS Fatigue

8. 8 Physiological Effects Motor Disturbances Spasticity Weakness Ambulation

9. 9 Physiological Effects Numbness and Tingling Tremor Visual Impairments Bowel and Bladder Dysfunction Sexual Dysfunction

10. 10 Psychological Effects Cognitive Dysfunction Affective Disorders Psychological Adjustment

11. 11 Treatment Adrenocorticotropic hormones Corticosteroids Emergent medications: Interferon beta-1a Interferon beta-1b Glatiramer acetate Mitoxantrone Natalizumab

12. 12 MS & the World of Work Importance of work: Identity Financial benefits Socialization Sense of purpose Group membership Health insurance

13. MS and Employment 90 to 95% of people with MS have employment histories Two-thirds were still working at the time of diagnosis 25 to 40% retain employment as the disease progresses

14. Factors Associated with Unemployment Gender Education Symptom type Course and severity Job type Employer attitudes Workplace discrimination

15. Unemployed People with MS 3/4 leave jobs voluntarily 4/5 feel they can work 3/4 would like to work

16. Employment Concerns Survey of People with MS Created a survey including 32 critical employment-related concerns Gathered responses in yes/no format on two dimensions: importance and satisfaction Identified strengths and weaknesses among items

17. Sample (N=1310) Female = 79% Caucasian = 92% Average age = 50 Unemployed = 57% 12 years education = 97% 16 years education = 40% Urban/suburban = 74%

18. Strengths % Imp 98 97 95 Are treated with respect by service providers Are encouraged to take control of their lives Have access to service providers %Sat 61 56 51

19. Employment Weaknesses %Imp 95 Have access to reasonably priced prescription medications Know about available employment and social services Have adequate health insurance so that they can recover and return to work Are treated fairly by employer during hiring process Receive up-to-date, easily understood information about benefits and work incentives from the Social Security Administration %Dis 78 75 73 72

20. Employment Weaknesses (cont) %Imp 94 93 91 89 Have their needs considered in the development of Social Security Programs Know their rights regarding job-related physical examinations Have adequate financial help to stay on the job Have opportunities for home-based employment Have assistance in coping with stress on the job %Dis 74 77 81 72 76

21. From Work to QOL: A Vocational Rehabilitation Model Predictors of QOL Educational attainment Employment status Stress/coping level Number of symptoms Persistence of symptoms R=.66, R 2 =.43, p<.001

22. 22 Factors Associated with Labor Force Participation Gender 80% of women with MS unemployed 66% of men with MS unemployed

23. 23 Factors Associated with Labor Force Participation Socioeconomic Status More likely to leave work force if have working spouse More likely to stay in work force if have higher education & larger savings Higher-level employees have more flexibility and autonomy in modifying job

24. 24 Factors Associated with Labor Force Participation Age Unemployment increases as a linear function of age: Significant relationship between age and MS- related functional disability Older people with MS may have the financial means to stop working

25. 25 Factors Associated with Labor Force Participation Physiological Symptoms Large reason for people with MS to leave the work force Fatigue Mobility problems Ambulation difficulties

26. 26 Factors Associated with Labor Force Participation Course and Disease Progression Least likely to be employed if: Chronic and Progressive MS Higher severity & number of persistent symptoms

27. 27 Factors Associated with Labor Force Participation Cognitive Dysfunction Diminished: Rate of learning Short-term memory Long-term memory Abstract reasoning abilities

28. 28 Factors Associated with Labor Force Participation Psychological and Emotional Factors While often accompany MS, not frequent reason given for leaving work force Much smaller impact on employment status than gender, age, physiological symptoms People reporting problems with emotional lability significantly less likely to be employed

29. 29 Factors Associated with Labor Force Participation Workplace Discrimination National survey (Roessler, et al., 2002): Treated unfairly in hiring process: 73% Were denied reasonable accommodations: 58% Received lower pay: 53% Were refused schedule modifications: 59% Received inadequate health insurance: 73% Received from employers little/no information about legal rights: 69%

30. 30 Factors Associated with Labor Force Participation Disability Benefits People with MS progress at higher and faster rates than people with other disabilities from: Active employment  Short-term disability  Long-term disability  Social Security Disability Insurance  “Too disabled to work” message

31. 31 Federal Laws that Provide Employment-Related Protections Americans with Disabilities Act (ADA) Covered employers Reasonable accommodations Disability Qualified Essential functions Undue hardship Other employment protections Enforcement

32. 32 Federal Laws that Provide Employment-Related Protections The Family and Medical Leave Act Requirements “Serious health condition” definition Coverage Foreseeable requires advance notice Verification required

33. 33 MS-Specific Interventions MS Employment Assistance Service Kent State University Operation Job Match Career Crossroads: Employment and MS

34. 34 Programs for People with All Types of Disabilities The State-Federal Vocational Rehabilitation program Disability and Business Technical Assistance Centers The Job Accommodation Network