Picture this typical scenario: Eric works as an account manager for a large Canadian bank, and has been living with HIV for about eight years. For the most part, his health is stable but sometimes, there are periods when he has to take time off from work to recover.
Eric has been on and off disability insurance multiple times over the years and it seems like every time he goes back on, he has to go through the exact same process, and get medical forms from his doctor, even though his time off has always been related to HIV. Not only does Eric have to go through this stressful process while he's feeling ill, he is never sure from one time to the next if his medical information will continue to remain confidential.
He wishes there was a way to simplify the process of applying for and getting disability insurance, and just be able to write in something like, ‘this is an episode just like my last one,’ so he can quickly get started on benefits, and his recovery. Still, Eric counts himself lucky to even have access to disability insurance. His friend Michael – who is also HIV- positive – works for a big retail chain downtown, but has no disability insurance, and worries what will happen if he ever gets sick and needs time off.
While Eric and Michael are not the names of real people, their stories are based on common experiences shared by many people living with HIV and other episodic disabilities who work but may need to rely on Short-term Disability Insurance (STD) or Long-term Disability Insurance (LTD) during periods of ill health related to their episodic disability. Negotiating disability insurance while living with an episodic disability like HIV can be complicated.
People with episodic disabilities face significant employment and income support issues. Recurring periods of ill health make it difficult to work, especially full-time. Most people with episodic disabilities must rely on health and disability benefits and due to the strict definitions and policies that govern these benefit programs, many people are not able to participate in the workforce part-time or when their health allows.
There are many Canadians like Eric and Michael who are living with HIV or other episodic disabilities, and who are working or want to work, who would stand to benefit from more flexible and realistic disability insurance options at their workplaces.
A few months ago, we at the Canadian Working Group on HIV and Rehab (CWGHR) held the Episodic Disabilities and Insurance Roundtable in Toronto to highlight issues surrounding employment and disability insurance for people living with HIV and other episodic conditions. To bring together people from various groups to discuss the issues from their unique points of view, we invited policy makers and representatives from community organizations, the business community, and the insurance industry.
Attendees discussed the lived experience of employees with episodic disabilities, as well as ideas for improvements on which insurance companies, employers, and policy makers could focus. We shared key findings from our research into disability and the workplace. In 2014, CWGHR had conducted a comprehensive review of income security issues for people living with HIV and other episodic disabilities. Results suggested that people are still encountering significant economic and employment barriers.
"For employees living with episodic disabilities, it is critical that eligibility for benefits and employment supports are flexible, broadly defined, and reflect the diverse needs of employees."
Many people living with HIV or other episodic disabilities are unable to access STD or LTD at their workplace. Workers in part-time positions and certain sectors, like retail and tourism, are not usually offered disability insurance benefits as part of their contract.
For those without access to STD or LTD, a flare up of an episodic disability that requires taking time off work often leads to applying to Employment Insurance (EI) Sickness Benefits (if they qualify), and when that runs out, exhausting their personal savings. If their period of illness extends beyond the 15 weeks allowed by EI and/or they completely exhaust their own savings, they may be forced to eventually apply to provincial income support programs, where there are often significant disincentives to returning to work built in to the system. For example, people living with HIV report fears about losing access to provincial drug benefits should they attempt a move back into the workforce.
Even for those who have access to private insurance through their employers, LTD and STD are often not designed to accommodate frequent shorter-term absences due to episodic disabilities. Short-term Disability Insurance may not provide enough time off for a person with an episodic disability to recover, while Long-term Disability Insurance requires “total disability” in order to qualify. People living with episodic disabilities are frustrated with having to re-substantiate their conditions every time they experience an episode.
The 2015 report from the Institute for Research on Public Policy, “Leaving Some Behind: What Happens When Workers Get Sick” recommends revising key concepts and definitions of disability that govern income support programs to include episodic disability, and ensuring employers have access to the resources they need to promote a healthy and productive workforce.
For employees living with episodic disabilities, it is critical that eligibility for benefits and employment supports are flexible, broadly defined, and reflect the diverse needs of employees. In the longer term, better definitions, and coordination across the disability income and employment support systems could improve the level of disability insurance coverage available.
The Episodic Disabilities and Insurance Roundtable, hosted by CWGHR, gave attendees an opportunity to discuss in more detail the issues facing people with episodic disabilities in accessing insurance. Wendy Porch, Manager, Episodic Disabilities at CWGHR, explained how language around episodic disability is often unfamiliar for many people as this is a new concept.
Restrictive definitions of what it means to be disabled mean that people living with episodic disabilities like HIV don't always fit into traditional definitions of disability. While Canada is more reliant on private health insurance than other similar countries, the majority of Canadian businesses are small and medium sized enterprises which don’t always have the resources big businesses have to provide disability insurance as a health benefit.
" Building greater public awareness that one’s disability may be episodic but the underlying condition is chronic and permanent is crucial."
Our host for the roundtable, attorney and author Eric Schjerning shared his experience during the 30 years he has been practicing law and dealing with cases involving disability benefits. He said that while in the past mental health was excluded from discussions about disability insurance, nowadays its episodic disability that is not given the attention it deserves. Schjerning believes this will be a growing issue that may require challenging the definitions used in policies and programs.
Strategic Diversity Consultant Deanna Matzanke, talked about the challenges both employees and employers face when dealing with episodic disabilities in the workplace. She pointed out that while disability can be expensive to employers in general, for smaller employers, losing even one key person to disability can be disastrous.
Disability/illness is assumed to have a start and a stop, however, episodic disabilities don't fit that model, further confounding difficulties with insurance provision. She suggested insurance companies determine more efficient ways to manage episodes of illness for employees with episodic disabilities. Matzanke also believes that the focus ought to be on capacity instead of disability. In other words, to focus on what the person can do, not just what they cannot do.
Roundtable participants suggested that employers who manage disability benefits best are those who work with employees to find creative solutions. In workplace environments where there’s a need for regular attendance (e.g. flight attendants, healthcare), larger corporations sometimes try to accommodate people living with episodic illnesses by looking at more flexible positions, and utilizing flex hours. For those workplaces where regular attendance is not as critical, a key accommodation strategy may be providing options for working from home. For those times when an individual must be ‘on claim’ working together to streamline the qualification process is an important step.
The roundtable provoked a healthy discussion about the ways to move forward for stakeholders in business, the insurance sector, and community led organizations. Clearly, there is a need to broaden “disability” to include more than the traditional definitions of disability.
As well, there is a need for more harmonizing between public benefits and private insurance. Building greater public awareness that one’s disability may be episodic but the underlying condition is chronic and permanent is crucial. Everyone at the roundtable agreed that the goal is to create more fairness in the system. Bigger corporations, both unionized and non-unionized, that have the resources and flexibility potential, can lead the way.
Insurance for people living with episodic disabilities can be complicated and these issues are not just restricted to disability insurance. Manulife Canada recently became the first large Canadian insurance company to provide life insurance to people living with HIV. However, as of May 2016, all other Canadian insurance companies generally refuse to provide life insurance to people living with HIV. While Manulife Canada's move is welcome, we hope to see more comprehensive changes in the insurance sector that allow for increasingly humane policies and practices in business contexts.
CWGHR’s Episodic Disabilities and Insurance Roundtable provided a unique opportunity for a diverse range of stakeholders to dedicate time and thought to the complex issues associated with episodic disabilities, insurance and employment.
The event was well received by participants and their thoughtful contributions have led to the development of a number of action items that can further the conversation on this complex topic. CWGHR will continue to pursue these action items in our work related to income security and employment of people with episodic disabilities.
The Canadian Working Group on HIV and Rehabilitation (CWGHR) is a national charitable organization, working to improve the quality of life of people living with HIV through rehabilitation research, education, and cross‐sector partnerships. CWGHR members include people living with HIV, members of community‐based HIV organizations, national associations of health professionals, government agencies, private businesses and the employment sector.
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