A Deeper Look at GLI: Defining disability

This week’s web feature looks at the question of whether or not policy-makers can determine the ability of people with disabilities to engage in paid employment. Under our current conditional system of income support, obtaining the approval of bureaucrats is necessary to receive disability income support.

I focused mostly on the nature of disabilities themselves, but Michael asked a very good question about process. I’ll repost my answer here, but I also want to touch on another related issue, that of obtaining a diagnosis.

Determining a diagnosis is not always easy or possible. Some diagnoses, like chronic fatigue syndrome, are obtained only through ruling out every other possibility. Other diagnoses can only be obtained with considerable expense or from specialists. For those in rural and remote areas with limited access to specialists, this can either diminish the possibility of a diagnosis or considerably increase the cost of obtaining one. Some doctors are also reluctant to make referrals to specialists unless they’re certain of the problem, and patients may not feel comfortable advocating for themselves. Yet there have been cases where disability supports have been refused because the diagnosis came from a family doctor rather than a specialist.

Canada’s problem of doctor shortages also has an impact. Not everyone has a family doctor who can make referrals or provide a consistent level of care, and symptoms can be easily overlooked or misdiagnosed from infrequent or emergency medical care.

Because of these challenges, many people with disabilities may not ever know that they have one or more disabilities and may be confused as to why they struggle with certain circumstances or symptoms for their entire lives. This, in turn, will affect their ability to participate in paid employment, as well as the level of income they earn.

But assuming that they can get some kind of diagnosis, disabled Canadians have only cleared the first hurdle. The second is the application process, which provides its own challenges. Most disability income support programs have their own specific definitions of eligibility that an applicant must meet, in addition to merely having a disability. Let me give you two examples.

For Canada Pension Plan Disability Benefits, you must have a disability that is "severe and prolonged," that prevents you from working at any job on a regular basis. Applicants fill out a package that includes a questionnaire about work history and medical conditions and a medical report for your doctor. Then "Service Delivery Specialists" (basically nurses trained to understand the policy) evaluate the application based on the medical condition, the impact of the condition or treatment on your availability for work, personal characteristics, and work performance.

In 2005, a House of Commons committee questioned this process, finding that the decisions were arbitrary and inconsistent. They also questioned the fairness of a process in which the decision-makers never meet the applicant, and nurses are given the power to over-rule interpretations of medical information given by doctors.

In Ontario, the first step in obtaining Ontario Disability Support Program is a financial check to ensure that you are in financial need. Then a Disability Determination Package must be filled out and sent to the Disability Adjudication Unit. The DAU determines whether or not you have a disability and whether or not your disability is substantial enough to prevent you from working. The DAU is composed of nurses, Occupational Therapists, and rehabilitation counselors.

The package of information you send them includes two forms to be filled out by your doctor, and a self-report form. Again, this is a centralized operation, with no contact between the adjudicators and you, the applicant. The DAU has been criticized as inconsistent in its decisions and not always transparent about its criteria, as well as for a tendency to discount family doctors.

Of course, this process is going on while sick, tired or impaired people are confronted by enormous stress in one of the most stressful areas of life – financial security. Instead of letting people look after their health, we make them live in poverty or anxiety about their financial situation.

Giving people unconditional income security would eliminate this huge stress, taking away the adversarial process of proving their disability and thus their “deservingness” for our support. In addition to being more humane, this just makes a lot more sense.