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A Practical Perspective on Understanding Episodic
Disabilities and Employment
By: Melissa Popiel, MSW
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Presentation Overview
• The Lived Experience• What is an Episodic Disability?• Current Challenges in Episodic Disabilities and
Employment• Initiatives of the Canadian Working Group on
HIV and Rehabilitation• Leading Practices in Episodic Disabilities and
Employment
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Goal of Presentation
Discuss a framework for understanding the impact of episodic disabilities on the work
environment and highlight leading practices to support clients living with episodic disabilities.
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The Lived Experience
A Case Study of Jill and her Journey Back to Health and
Work
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The Lived Experience:A Case Study
“So, I'm forty and four years ago I hit rock bottom in theabsolute worst way you can possibly do. I became sodysfunctional that I was almost catatonic, ended up in ahospital and was admitted to the psychiatric ward atMount Sinai for three weeks. I'm a lawyer, I'm aprofessional, I'm a mother, I'm a wife, daughter, sister— you name it. I was at the peak of my career…”
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The Lived Experience:A Case Study cont.
“To go from high-functioning to no functioning wasthe most dramatic thing I've ever gone through in mylife. Three weeks it took me to become functionalenough that I could get myself out of bed [and] I couldremember to wash my face and brush my teeth, to getmyself on medication, to get some kind of control overwhat I was doing on a day-to-day basis..”
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The Lived Experience:A Case Study cont.
“So after three weeks, I was determined to befunctional enough that I could be discharged and senthome. And that in many ways was like being droppedoff a cliff. I went from 24-hour care with a specialistattending to the kinds of things I needed to absolutelyno care at all. My husband works. I don't have family inthe city and my daughter goes to school. So I was athome alone, with no care whatsoever in an extremelyvulnerable state. And within about three or four weeks Iwas close to needing to be hospitalized again…”
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The Lived Experience:A Case Study cont.
“In those three or four weeks my husband was on the phone continuously trying to find anybody who had anopening for one of the psychiatrists, any kind of interimsupport that we could get that didn’t cost an arm and aleg. And the only saving grace was that my mother inlaw picked up and came and literally stayed with me forfive weeks..”
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The Lived Experience:A Case Study cont.
“I had got so bad just before she came that myhusband had taken me to CAMH [the Centre forAddiction and Mental Health] to visit one of the socialworkers because he just didn't know what to do. Andthis was affecting how often he was getting towork on time [and] my daughter was, she was onlythree at the time…”
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What is an Episodic Disability?
• Marked by fluctuating periods and degrees of wellness and illness
• Unpredictable• Episodic disabilities include: some forms of
mental illness, HIV/AIDS, multiple sclerosis, diabetes, and some forms of arthritis and cancer
• Presents challenges for active labour force participation, insurance benefits, income security, and social inclusion
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The Numbers
• An increasing number of people are living with episodic disabilities
• It is estimated that:20% of Canadians will experience an
episode of mental illnessThree million Canadians have diabetes63,000 Canadians are living with HIVFour million Canadians are affected with
arthritis and other rheumatic conditions; expected to double by 2020
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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
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Time (months, years living with HIV)
Social Supports
Living Strategies:Attitudes & Beliefs Living Strategies
Maintaining Control
Social Supports
Living Strategies:Blocking HIV out of the mind
Trigger:HIV Diagnosis
Living Strategies:Maintaining Control
Personal Attributes:Aging
Stigma
Le
vel o
f a
bili
tyEpisodic Disability Framework
Trigger:Opportunistic Infection
Day-to-Day
Depression
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How can people use this information and apply the Episodic
Disability Framework?
RehabProfessionalsCan use it to ask questions about health challenges
Policy MakersCan use it to help guide
programs & policies
People Living with Episodic Disabilities
Can use it to better understand and describe their health challenges
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Definition of
Disability
Access to Quality
Services Income security
Barriers to Employment
Summary of Some of the Challenges Facing People Living with Episodic Disabilities
Proctor et al. 2002
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Canadian Working Group on HIV and Rehabilitation
(CWGHR)Established in 1998, CWGHR emerged as aninnovator in bridging the traditionally separateworlds of HIV, disability and rehabilitation.
CWGHR is a national charitable organization aimingto address the complex and fluctuating health andsocial needs of people living with HIV and otherepisodic conditions by improving access torehabilitation care, support and services.
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What does CWGHR do?
1)Coordinates and advises on issues of disability, rehabilitation and HIV
2) Leads and supports initiatives in rehabilitation and HIV
3) Promotes cross-disability linkages to address common issues and challenges experienced by people living with HIV and those with other episodic conditions
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How CWGHR works
CWGHR’s programs are based on 4 key pillars thatare essential to developing and implementingcomprehensive, effective and relevantrehabilitation policies and programs:
• Education/knowledge exchange • Policy• Practice• Research
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How CWGHR works
CWGHR focuses on 4 principal areas within each of its 4 pillars of work:
1.Access to Rehabilitation2. Income Security and Employment 3. Integrated Approaches to Episodic Disabilities 4. International Linkages
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Integrated Approaches to Episodic Disabilities
To promote cross-disability linkages and action onissues of mutual concern
Policy: National Episodic Disability Network (EDN) andOntario Episodic Disability Network (OEDN)Practice: Episodic Disability Employment Network(EDEN)Education: Managing Episodic Disabilities CourseSeriesResearch: Barriers and Facilitators to Labour ForceParticipation for People Living with HIV
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Employment Leading Practices for People Living with Episodic Disabilities
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Current Challenges in the Workplace
• Consultations/research identified concerns about return to work and sustaining work
Stigma and discrimination Length of time out of workforce Disclosure
• Uncertainty/fear can take many forms• Many unknowns with employment
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Supporting Clients with Episodic Disabilities
• Episodic disabilities vary over time• Possible concurrent conditions • Require long term perspective• Regular check-ins with client• Need access to supports outside of the
workplace: medical, emotional & community supports
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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
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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
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Helpful Hints for Rehabilitation Providers
General Counsel:• Help the client understand the episodic nature
of the illness• Help the client understand prognosis vs.
diagnosis• Help the client understand their desired
working environment – not-for-profit vs. large employer
• Find out the client’s tolerance for risk
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Helpful Hints for Rehabilitation Providers cont.
General Counsel cont.• Help the client make an informed decision
about illness disclosure• Develop an elevator story with the client
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Helpful Hints for Rehabilitation Providers cont.
Within the workplace:• Help employers change their thinking on when
and where work needs to be done • Recommend that clients are pro-active in
communicating with employers• Encourage ongoing communication between
client and employer• Help the client understand the workplace
policy on sick days
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Helpful Hints for Rehabilitation Providers cont.
Within the workplace:• Actively help clients develop a back-up plan
for unpredictable absences• Help the client understand the process of
requesting an accommodation• Recommend that clients keep files
meticulously up to date
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Helpful Hints for Rehabilitation Providers cont.
Medical & Community Resources:• Understand that on-going management of the
episodic disability is dependent upon access to care
• Ensure that the client has clear guidelines from their medical team about working
• Be aware of resources that may help the client i.e. Health Gateway
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Additional Workplace Supports
• Family/Employee Assistance Programs (FEAP)
• Peer Associations• Variety of disability associations (e.g. National
Network on Mental Health (NNMH), Arthritis Society, Canadian AIDS Society (CAS))
• Episodic Disabilities Employment Network (EDEN) website
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Summary
• Develop a long-term perspective with the client• Find out the client’s tolerance for risk• Learn about client concerns with return to work• Create space to see what works• Share your successes
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Additional Information
Melissa Popiel: Coordinator of HIV and Episodic Disabilities Initiatives
416-513-0440 x.235
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Thank You
For more information see www.hivandrehab.ca