B.C. needs good data on disabilities

Re: “A new age for Canadians with disabilities,” comment, Aug. 7.

Clearly, Al Etmanski has achieved a lot that will benefit persons with disabilities, but I respectfully suggest he turn his attention to the collection of good data.

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The World Health Organization said: “For people to count they have to be counted.” Nowhere is this more true in the case of persons with disabilities. It is difficult to find long-term, accurate population data on the topic.

At one time, B.C. had this ability in an agency known as the Health Status Registry in Vital Statistics under the Health Ministry. Sadly, it has been allowed to decay to a point of near irrelevance.

The ministry has produced plans and flow charts, and spent money on outside consultants since 2013 with very little to show. Furthermore, it is ignoring functional disabilities such as cerebral paralysis, developmental problems or learning problems, and is concentrating on structural congenital anomalies in its “New Initiative,” which will have an upper age limit of ascertainment of one year.

In contrast, the health registry’s upper age limit for ascertainment was 19 years, and no age limit for genetic disorders. This is the sort of data that persons with disabilities need in order to plan and prod the government into providing resources.

There is nothing more powerful than good data. The registry had this ability, and still could since the machinery is still in place to resuscitate it, but it requires a “champion” in the ministry. Perhaps Etmanski could turn his considerable skills to this task, since the ministry has shown no interest.

Brian Lowry, MD


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