Article that downplays the importance of diagnosis for those with developmental disabilities: with comment

1. 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-andtreat”
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
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Comment
I cannot disagree more with this approach. This is in keeping with governmental policies of downplaying and decreasing the access
to
FASD diagnosis. The fact is that without a diagnosis the developmental disabilities of FASD are not acknowledged. As it is, those
diagnosed represent a small minority of those with the disabilities of FASD. Without a diagnosis, which should include the cause,
research into the cause will be less. This is in keeping with those who do not want to acknowledge the role of alcohol as a cause of
developmental disabilities.
The number of births in Canada in 2013 was 380,323
[www.statcan.gc.ca/tables-tableaux/sum-som/l01/cst01/hlth85a-eng.htm]
If we accept the conservative estimate of the incidence being 1 per 100 births then 3-4 thousand of those born in Canada will have
FASD. We do not know how many individuals are diagnosed each year in Canada, but it has to be a small fraction. Keep in mind
that
this is the incidence. The prevalence is the number who survive less those that are deceased for any give time. Clearly there are
thousands of individuals who have not been diagnosed and have not had neuropsychological testing. They can be found homeless
on
the streets, in prisons, and attending mental health clinics: help and understanding for those individuals will only come through a
diagnostic process.
Barry Stanley