Distinguishing disability from disease a constructive approach for health services and policy

November 15, 2016

Disabilities are currently combined together with disease in practically every context: in everyday conversation, in the media, in the terminology used by health professionals, and in the way health care services are organized and delivered.

In a new paper published in Frontiers in Public Health’s Section on Child Health and Human Development, NeuroDevNet investigator Dr. Anton Miller and CanChild’s Dr. Peter Rosenbaum propose that this conflation is problematic, because it tends to undercut the broader range of health issues and needs faced by people with a chronic health condition that might be associated with ‘disability’.

“Health conditions are things people have, whereas disability is defined in terms of how an individual functions,” says Dr. Miller, a University of British Columbia-based developmental pediatrician who is part of the Network’s Empowering Steps Movement Therapy project.

In the absence of a clear distinction between disease and disability, providers and users of health services, as well as researchers and policymakers tend to default to a disease-based lens, which focuses on diagnosing and treating diseases and disorders. This works well when the underlying biological processes are well understood and specific treatments for these processes are available. In the case of children with neurodevelopmental disabilities, Miller and Rosenbaum contend that a “diagnose-and-treat” approach is inappropriate.

“Affected children differ greatly in their symptoms, abilities and difficulties,” observes Dr. Miller. “Most of the diagnoses used are not informative as to specific and biologically-based interventions. A disability perspective can lead to a program of interventions and supports (services that help you keep, learn, or improve skills and functioning for daily living) based on the characteristics of the individual child and family.”

Drs. Miller and Rosenbaum hope to influence education of health professionals as well as policy and services through their critical synthesis of a wide range of sources, including the World Health Organization’s International Classification of Functioning, Disability and Health, known as the ICF. The pair also scoured evidence from clinical and scientific research spanning multiple neurodevelopmental disabilities, and reflected on philosophical sources that describe how different kinds of knowledge inform our thinking and our perspectives, as well the impact that functional impairments can have on families in their clinical practices, irrespective of a child’s diagnostic label.

Key elements of a ‘disability perspective’ are individual functioning and the person’s environment, according to Dr. Rosenbaum. “Functioning occurs at various levels – including bodily processes, daily activities, and in social contexts, where a person’s environment influences their experience of disability,” says Dr. Rosenbaum. “All of these aspects of an individual’s life must be considered simultaneously.”

Adopting a ‘disease perspective’ means that people may fail to pay careful attention to optimizing functioning through rehabilitation and supports aimed at the person and their environment, adds Rosenbaum.

The authors note that current clinical services, research efforts and policymaking are often oriented to a disease perspective with the result that access to assessment and treatment, the ability to contribute to new knowledge about disability by participating in studies, and eligibility for (re)habilitative services and supports may all hinge on the presence or absence of a particular health condition.  

“We provide recommendations for a recalibration of the disease and disability perspectives within clinical service delivery (clinics and data gathering that emphasize functioning), policy-making (access to services and supports based on functional needs and abilities), research (studies of child functional characteristics and impact on families and family need across conditions), and health education,” notes Dr. Rosenbaum.

The first step toward replacing policies regulating access to services and supports based on diagnostic category with a less categorical, more disability-based approach will require conversations with policy and decision makers, Dr. Miller concludes.

“This is the responsibility of clinicians, educators, and leaders in health services research,” agrees Rosenbaum, as it can be linked – where appropriate – to activism by stakeholder groups that centres on needs-based assessment of functional limitations. “Joining forces can be more effective if due consideration is also given to functional strengths – not only within the child, but also the family and, ultimately, the community as well.”

Miller and Rosenbaum Frontiers 2016 Disease and Disability Perspectives

Research Snapshot: Separating Disability from disease a constructive approach for health services and policy