Development and pilot testing of a tool to calculate parental and societal costs of raising a child with intellectual disability.

Background There is a lack of evidence in Canada surrounding the costs to parents and society to raise a child with intellectual disability. Knowledge of these costs is necessary to ensure appropriate governmental support to families and to assess the financial impact of new diagnostic tests and treatments. Method We adapted 2 paper-based cost diaries into an online retrospective survey and evaluated it using a small pilot study of individuals with Down syndrome. Results Parents completed the survey with apparent ease, giving answers requiring little clarification; they used comment fields to add data that elaborated on both financial and emotional costs. Costs appeared concordant with those reported in other countries. Conclusion The survey successfully documents care time required, impact on employment, and other expenses. Minor modifications were made as a result of this pilot, and the survey is now available for wider use. [ABSTRACT FROM AUTHOR]