Addressing the Challenge of Supporting Young Adults with Chronic Disease and Disability in the Labor Market

December 2017

Contributed by Arif Jetha, Associate Scientist, Institute for Work & Health, Toronto, Canada
When we think about young workers, we tend to picture people in good health with a vibrant, active lifestyle. We sometimes have blinders on regarding the challenges faced by young people who live with potentially disabling chronic health conditions, and often lack the knowledge to support them as they enter the labor market. This lack of awareness may have an especially important impact on those beginning their career with a chronic disease or disability that has no visible signs or symptoms, or is characterized by symptoms that fluctuate in severity such as arthritis or depression. 
A pair of studies conducted at the Institute for Work & Health in Toronto, Canada help illustrate the needs of young workers living with chronic disease and disability, and the difficulties they face accessing support within their places of employment. 
A recent survey of young adults living with psychological, learning and physical disabilities found that extended drug coverage, the opportunity to modify the way jobs are performed and flexible scheduling arrangements are among the most useful supports for finding and sustaining employment (1). Many of these needs are also reported in studies of older workers with disabilities (2). 
What is notable in this study is that many young people indicated difficulties accessing the most needed workplace supports. Out of the more than 150 young adult participants surveyed, three in four said a reluctance to talk about the details of their health condition at work was a barrier to accessing job accommodation and health benefits. Roughly the same share of participants thought that their jobs, which were mostly in sales and service sectors, could not be accommodated. Two-thirds also talked about negative attitudes towards people with disabilities in the workplace as a reason for not getting help.
The barriers to accessing the most needed workplace supports may be magnified for those living with a condition invisible to others or characterized by unpredictable flares of symptoms (3). Interviews and focus groups conducted with people living with arthritis found that having a condition not visible to others enabled them to conceal their condition from others. Yet, many of the young adult participants in the study were worried that their disease would ultimately worsen as they progressed in their career, and acknowledged that they would ultimately have to request formal accommodations or modifications to sustain employment. 
Being at an early career phase was also related to a reluctance in requesting assistance or asking for help out of fear of losing their jobs, limiting their career advancement opportunities or having their colleagues dismiss the impact of their health condition.  As one young adult who participated in the study described it: “I think there’s always the misconception that people don’t get impairments until later in life and so that can always be something very difficult either to convey to your employer or to your colleagues [who think] maybe you’re getting special treatment or you’re just a big complainer.” 
Adding to the findings described in both studies is the changing nature of work that young adults encounter as they start their career. Market pressures, cost cutting and changing social policies in industrialized countries has meant that full-time or permanent jobs are less available to the current generation of young people starting their careers (4). As a result, young adults living with chronic disease and disability are faced with the challenge of managing their health in non-standard employment situations where formal job accommodations and benefits may not be readily available and job security is a constant concern. 
So what’s the takeaway for employers and policymakers? Primarily, the current generation of young workers living with chronic disease and disability may require solutions that can be tailored to their needs to support their engagement in the labor market. 
On the bright side, among the most needed workplace supports are those that are low cost, such as flexible scheduling arrangements. Being able to start late or leave early on some days, to work from home on occasion, or to take frequent breaks can make a world of difference in enabling young people to attend medical appointments or self-manage their health condition. Offering a work environment where young people have the latitude to modify the way they perform tasks is another low-cost strategy. We’re talking about an environment that lets workers figure out their own ways to complete tasks, identify work-arounds for limitations, or ask for help without repercussions. These are also examples of arrangements that older workers with more job tenure often report feeling more comfortable in accessing (2, 3). 
In some of the jobs in which young people often work, such as sales and service sectors, it can be difficult for an employer to offer scheduling flexibility or enable an employee to choose the way in which they perform their job tasks. As an important first step, we recommend that communication practices between supervisors and young workers be strengthened as a way to start a dialogue on employment needs and the identification of relevant support strategies. Strengthening communication may be especially important for those living with invisible episodic conditions who may struggle with the decision to talk about their limitations or request formal accommodation (5). 
A supportive workplace brings out the best in its employees -- not only young adults living with chronic disease and disability, but also in a broader range of workers facing different life circumstances. Therefore, responding to the needs of young workers will also enable organizations to better respond to a range of other issues, including productivity loss, staff retention, morale, and workplace hazards that can contribute to injury or illness (6). 
Young adults with chronic disease and disability face a gap with regards to the workplace supports that they most need. This gap can be magnified when their conditions are episodic and invisible. By providing flexible strategies and solutions, employers and policymakers can play a critical role in helping young adults living with health conditions find employment and thrive in their working lives. The impact can be important not only for labor market activity, but for quality of life. 
References
  1. Jetha A, Bowring J, Furrie A, Smith F, Breslin C. Workplace needs analysis of young adults with disabilities during the transition from school to work. Under review. 2017.
  2. Gignac MA, Cao X, McAlpine J. Availability, need for, and use of work accommodations and benefits: are they related to employment outcomes in people with arthritis? Arthritis care & research. 2015;67(6):855-64.
  3. Jetha A, Bowring J, Tucker S, Connelly C, Martin Ginis K, Proulx L, et al. Transitions that matter: Life course differences in the employment of adults with arthritis Disability & Rehabilitation. 2017;In press. .
  4. Lyons S, Ng E, Schweitzer L. Generational career shift: Millennials and the changing nature of careers in Canada. . In: Ng E, Lyons S, Schweitzer L, editors. Managing the new workforce: International perspectives on the Millennial generation. Northhampton, MA: Edward Elgar Publishing LTD; 2012. p. 64-85.
  5. Lindsay S, Cagliostro E, Carafa G. A systematic review of workplace disclosure and accommodation requests among youth and young adults with disabilities. Disability and Rehabilitation. 2017:1-16.
  6. Breslin FC, Lay AM, Jetha A, Smith P. Examining occupational health and safety vulnerability among Canadian workers with disabilities. Disability and Rehabilitation. 2017:1-6.
Arif Jetha is Associate Scientist at the Institute for Work & Health. His research focuses on preventing and managing work disability among workers with chronic conditions.
Acknowledgement
CPH-NEW is a Center for Excellence to Promote a Healthier Workforce of the National Institute for Occupational Safety and Health. CPH-News & Views is a semi-monthly column written by Center researchers on emerging topics related to healthy workplaces. These comments reflect thoughts of the individual researchers and do not represent conclusive research summaries, nor do they necessarily reflect a consensus among all Center personnel. 
We welcome your responses and discussion. Please send all questions and comments to CPHNEW@uml.edu.