A Practical Perspective to Understanding HIV and Employment

1. A Practical Perspective to Understanding HIV and Employment By: Le-Ann Dolan Program Director Canadian Working Group on HIV and Rehabilitation (CWGHR)

2. Presentation Overview • Goal of Presentation • Introduction to CWGHR • Episodic Disability Framework • Barriers to Employment for People Living with HIV • Leading Practices in HIV and Employment

3. Goal of Presentation Discuss a framework for understanding the impact of HIV on the work environment and highlight leading practices to support patients living with HIV.

4. Canadian Working Group on HIV and Rehabilitation (CWGHR) Established in 1998, CWGHR emerged as an innovator in bridging the traditionally separate worlds of HIV, disability and rehabilitation CWGHR is a national charitable organization aiming to address the complex and fluctuating health and social needs of people living with HIV and other episodic conditions by improving access to rehabilitation care, support and services

5. How CWGHR works • CWGHR’s programs are based on 4 key pillars that • are essential to developing and implementing • comprehensive, effective and relevant • rehabilitation policies and programs: • Education/knowledge exchange • Policy • Practice • Research

6. How CWGHR works • CWGHR focuses on 4 principal areaswithin • each of its 4 pillars of work: • Access to Rehabilitation • Income Security and Employment • Integrated Approaches to Episodic Disabilities • International Linkages

7. HIV as an Episodic Disability • Marked by fluctuating periods and degrees of wellness and illness • Unpredictable • Other episodic disabilities include: some forms of mental illness, HIV/AIDS, multiple sclerosis, diabetes, arthritis, and some forms of cancer • Presents challenges for active labour force participation, insurance benefits, income security, and social inclusion

8. The Episodic Disability Framework Exploring Episodic Disability from the Perspective of Adults Living with HIV • Developed as part of a qualitative • research study • Conducted a series of focus groups and • interviews with 38 adults living with HIV • Participants were asked about health- • related challenges living with HIV and • how these impact on their overall health O’Brien et al. 2008

9. Living Strategies Maintaining Control Living Strategies: Attitudes & Beliefs Depression Stigma Living Strategies: Blocking HIV out of the mind Personal Attributes:Aging Social Supports Living Strategies: Maintaining Control Day-to-Day Social Supports Trigger: HIV Diagnosis Trigger: Opportunistic Infection Episodic Disability Framework Level of ability Time (months, years living with HIV)

10. Barriers to Employment for People Living with HIV

11. Common Barriers to Employment • Long work hours • Limited access to transportation • Limited paid sick leave • Attending medical appointments • Health uncertainty • Lack of access to timely care, treatment & support • Stigma/Discrimination • New hire probationary periods • Lack of access to child care • Length of time out of workforce

12. Common Barriers to Employment cont. • Medication side effects • Balancing work and other aspects of life • Demanding Physical duties (e.g. standing, lifting) • Lack of access to flexible workplace policies • Lack of union protection / fair grievance procedure • Lack of access to extended drug and health benefits • Limited opportunities for advancement • Need for retraining and education

13. Helping Patients Understand HIV and Employment • HIV-related illness varies over time • Possible concurrent conditions • Require long term perspective • Regular check-ins with patient • Need access to supports outside of the workplace: emotional & community supports • Connect with an employment counselor or occupational therapist • Workplace accommodations are available

14. Case Study Example John, a long-term employee at a customer service centre, was diagnosed HIV positive. Initially, the medications were affecting his ability to get to work. He met with his manager to identify that it was likely he would use all remaining sick days and still have days when he would not be able to work. What supports would help John to maintain his job?

15. When is an Accommodation Needed? • Examples of times when a workplace accommodation may be needed: • Doctor’s appointments • Periods of personal illness • Periods of illness with a family member • Taking medications at work • Dealing with the side effects of medications at work

16. Leading Practices in HIV and Employment

17. Helpful Hints for Nurses • Help the patient understand that there will be periods of illness and wellness • Determine if all needed medical supports are in place • For patients returning to the workplace, encourage the patient to review the job requirements to determine if the core job requirements can be done over time

18. Helpful Hints for Nurses • For patients currently working, encourage the patient to review the job requirements to determine which of the job requirement(s) requires an accommodation and give some thought as to what type of accommodation will be helpful • Determine what other supports the patient has that can assist with employment issues i.e. employment counselor • Encourage the patient to ask about the process of requesting an accommodation • Know that disclosure of HIV status is not required in most cases but disclosure of any functional limitations related to the job is needed

19. Examples of Accommodation Leading Practices • Flex time • A private space to take medications • More frequent breaks • A private space to rest • Adaptive technologies • Peer supports • Part-time with full benefits • Part-time with pro-rated benefits • Consult an occupational therapist (OT) • Visit the Job Accommodation Network website

20. Additional Workplace Supports • Employee Assistance Programs (EAP) • Peer Associations • Variety of disability associations (e.g. National Network on Mental Health (NNMH), The Arthritis Society, Canadian AIDS Society (CAS) • Episodic Disabilities Employment Network (EDEN) website

21. Additional Information Le-Ann Dolan Program Director Canadian Working Group on HIV and Rehabilitation ldolan@hivandrehab.ca 416-513-0440

22. Thank You For more information see www.hivandrehab.ca