Re-examining the role of episodic disabilities - Part II

In the Fall 2007 issue of VOICES, we discussed ‘episodic disabilities’, those disabilities that have an episodic component to them - episodes when the person is well enough to work, and unpredictable episodes when they physically cannot work. Most existing disability income support policies are designed for continuous inability to be employed; for example, the Canada Pension Plan –(Disability) (CPP-D) defines disability as ‘prolonged’ and ‘severe’ before one can qualify for income support benefits. The unintended consequence is that many people with these episodic disabilities disengage from the workforce completely, even though there are periods when they can work, in order to access the disability income support and the health care and other benefits that they desperately need.

When discussing this issue, it becomes clear that there are several stakeholder groups that need to be engaged in a comprehensive solution:

People living with episodic disabilities who need to be involved in issues related to their health and / or that affect them economically. the public disability insurance plans such as Canada Pension Plan –(Disability), for reasons mentioned above provincial disability income support programs private insurance carriers employers, managers and supervisors human resources professionals rehabilitation professionals other health care professionals.

What is being done in Other Countries?

International and Canadian studies have concluded that in order to achieve significant benefits for the integration of people with disabilities, national governments must establish strong and coherent policies in the area of employment1 .

Comprehensive models in other jurisdictions include:

active involvement by business and labour in federal policy and program planning; active employer contact with workers with disabilities; early assessment with a rehabilitation focus; programs which encourage and support labour force participation; provision of financial assistance (including partial benefits); government-funded incentives to employers to enable them to engage in early identification, planning for rehabilitation and immediate protection of financial security.

Who is doing what in Canada?

In Canada there are CPP-D policies that facilitate return to work for recipients:

automatic reinstatement whereby a CPP-D recipient who returns to work, and within two years needs to withdraw from employment for the same or a related condition, will be reinstated with only a physician’s statement three-month work trial period whereby a CPP-D recipient can maintain their CPP-D status during up to three months of employment to ensure employment stability before the file is closed earnings level of $4300 (for 2007) before the need to report to CPP-D. Reporting then allows for an exploration of rehabilitation and other support services offered by CPP-D. Although these policies facilitate the return to work experience for CPP-D recipients, they do not address the need for disability income support for those recipients who are able and willing to return to work in an episodic capacity. In other words, CPP-D recipients living with episodic disabilities who are able to earn income in periods when they are not disabled by their disease do not have the option of receiving partial CPP-D for the episodes when they are not able to work, presenting a significant barrier to employment2 .

In Canada, the research on return to work models has supported the involvement of multiple stakeholders. For example, employing the four-stage Sherbrooke model resulted in a remarkable reduction of total rehabilitation and income support costs by over 50%. Although the research targeted workplace back injuries and employees who were Workers’ Compensation Benefits recipients, the results have implications for a broader audience. Implemented and researched at 31 workplaces in the Sherbrooke area, the model was developed to provide an integrated intervention targeting both the worker and the job site. Injured workers participating were ‘at risk’ for chronic absence from the workplace. “For each injured worker participating in the program, a team was set up that included the ergonomist, the worker’s supervisor, management and union representatives, and the injured worker. The recommendations of the team were submitted to the employer, and the implementation of these solutions remained the employer’s responsibility.”3

A Focus on Episodic Disabilities and the Cross-Disability Approach

The Canadian Working Group on HIV and Rehabilitation (CWGHR) is a national, multi-sector, multi-disciplinary, charitable organization of stakeholders involved in rehabilitation in the context of HIV. Research conducted by CWGHR has shown there are many disabilities that are similar to HIV in that they are lifelong and episodic in nature4 , disabilities like multiple sclerosis, some forms of cancer and arthritis, mental illnesses and lupus.

Since 2001, CWGHR has undertaken research that has shown that the episodic nature of HIV and other disabilities wreaks havoc with the work lives and income for people living with episodic disabilities. In addition, CWGHR’s research has determined that many people with episodic disabilities are able, willing and eager to work; however, systemic and practical disincentives, specifically, lack of partial disability income support if one works part-time, leave few alternatives for recipients except to remain disengaged from paid employment to maintain critical disability income and health care supports.

Tools for Human Resources Professionals to Play a Leadership Role

One of the stakeholder groups mentioned above that can play a key role in the development and implementation of solutions are Human Resources (HR) professionals. HR professionals are in pivotal positions in organizations, as they can be the primary resource and liaison amongst the employer, the insurance carrier, rehabilitation professionals and the employee with a disability.

Yet results of a survey of HR professionals across Canada indicated that HR professionals are not able to identify the percentage of their disability caseload that was episodic. They also require further information about episodic disabilities as well as strategies to support the inclusion of employees with episodic disabilities in the workplace. Some of the key findings from the survey are:

• Over sixty (60) percent of the respondents reported that they have little to no knowledge on approaches to managing cases of episodic disabilities.
• Almost seventy (70) percent of all respondents reported that they are unable to statistically identify cases of episodic disabilities in their caseloads.
• Over fifty (50) percent of respondents reported that their current training was not useful with respect to episodic disabilities.
• Fifty-six (56) percent of Certified Human Resources Professionals (CHRP’s) interviewed expressed interest in training specific to episodic disability issues.
• Some respondents have been successful in finding creative solutions to Episodic Disability issues.
• Many HR professionals have individually invested time to research supportive options for persons with Episodic Disabilities.

The full report can be accessed at: http://www.hivandrehab.ca/EN/episodic _disabilities/documents/HR_report_English.pdf

As a response to the identified need for more information on episodic disabilities, CWGHR has developed an on-line course on episodic disabilities for Human Resources professionals. The course uses a variety of adult teaching modalities. For example, a Workplace Self-Assessment tool explores five organizational dimensions:

• Awareness and Leadership
• Planning and Sourcing
• Selection and Hiring
• Staff Development, and
• Creating an Inclusive Environment. In addition to the Workplace Self-Assessment Tool described above, other adult teaching methods employed include readings on specific disabilities in the workplace context, websites resources on accommodation, a case study and a concluding assignment to assess participants’ new knowledge on episodic disabilities. ,

On-line courses have several advantages including the convenience of working independently and at your own pace. If you are interested in finding out more about the course, or know of someone who would benefit from it, please contact info@hivandrehab.ca or check our web site at www.hivandrehab.ca .

As there are multiple stakeholders that need information about episodic disabilities in order to collaborate on meaningful solutions, resources are being developed for other stakeholders. For example, those in addition to Human Resources Professionals who are in key positions in the workplace include employers, managers and supervisors. Insurance carriers are also part of the solution, and need specific information about the impact of existing inflexible policies. Leadership is needed by public policy makers who are responsible for disability income support programs such as CPP-D.

Our government representatives can influence and direct resources to research more flexible alternatives to the existing restrictive models. However, they need to know the issues that are of concern to their constituents. Health care providers such as physicians are often required to complete disability applications, and need to understand the implications of their actions. Rehabilitation professionals need to understand the employment barriers their patients face. These stakeholders require specialized knowledge in order to be of assistance to their patients. CWGHR is planning to develop educational resources for these groups in the near future.

What role do patients play in lobbying for change?

As mentioned above, stakeholders in general need to be informed about the consequences of inflexible disability income support policies and programs, and of workplace policies and practices that are barriers to employment participation.

Patients are important stakeholders in providing the information about this issue to other stakeholders. CWGHR has a range of resources that can assist patients to do this. For example, CWGHR’s website contains fact sheets on episodic disabilities, as well as research reports in English and in French. Slide presentation materials are also available. CWGHR staff may be able to do a presentation on episodic disabilities, or assist patients to make a presentation.

Patients can also become CWGHR members. The benefits of membership include a more active role in the work that CWGHR does, access to its resources first-hand, and interaction with a network of people who are working toward improving the employment opportunities for people living with arthritis and other episodic disabilities. For more information on the episodic disability initiatives and resources at CWGHR, and how to be a member contact info@hivandrehab.ca or check, CWGHR’s web site at www.hivandrehab.ca .

In the next issue, we will explore in greater detail the policy barriers that are employment disincentives for people living with arthritis and other episodic disabilities, as well as the opportunities to play an active role in making a difference.

Eileen McKee is Manager of Episodic Disabilities Initiatives at CWGHR. She worked for twenty years as an administrator of a health care agency, and as a clinician and instructor before joining CWGHR in its research and policy work.

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1 CWGHR commissioned the Social Program Evaluation Group at Queen’s University to analyze Canadian and international income support, disability and work place policies and programs related to episodic disabilities. The full report can be accessed at http://www.hivandrehab.ca/episodic/Final%20Reports/Policies%20and%20Programs%20-%20English.pdf. In addition, an annotated bibliography (alphabetical and categorized) is available on request. Bullets above reflect the features of responsive policies and programs.

2 For more information about CPP-D, see http://www.hrsdc.gc.ca/en/isp/cpp/summary.shtml 3 Loisel, P, M Durand, B Diallo, From Evidence to Community Practice in Work Rehabilitation: The Quebec Experience The Clinical Journal of Pain 19:105–113 © 2003 Lippincott Williams & Wilkins, Inc., Philadelphia. 4 Proctor, P. Looking Beyond the Silo: Disability Issues in HIV and Other Lifelong Episodic Conditions. Canadian Working Group on HIV and Rehabilitation. May 2002.