Inequalities in provision of the Disability Living Allowance for Down syndrome

Objectives: To assess factors associated with granting of the Disability Living Allowance (DLA) for Down syndrome. Design: Cross Sectional survey. Setting: Families with a child with Down syndrome enrolled in a community-based trial of vitamin supplementation. Participants: 156 children with trisomy 21 (59% male, 20% non-white) were enrolled before 7 months and 138 completed follow up. Main outcome measures: Before two years old, we surveyed parents about applications for the DLA and socioeconomic factors and assessed the child’s development. Results: Application for the DLA was not associated with ethnicity or English speaking. Significantly less ethnic minority parents (OR=0.10; 95% CI 0.03 to 0.35) and parents with English as a second language (OR=0.15: 95% CI 0.04 to 0.62) were granted the DLA. Amongst those granted DLA, ethnic minority families were significantly less likely to be granted a higher monetary award (OR= 0.19; 95% CI 0.06 to 0.55). Severity of disability, reflected by quartile of Griffiths Developmental Quotient or presence of severe cardiac disease requiring surgery, was not associated with application, granting, or level of the DLA award. Conclusions: Although all children with Down syndrome meet some of the criteria for the DLA, only 80% were receiving this benefit. The decision to award DLA and the monetary level of the award favoured white, English speaking parents and was not related to severity of disability. Routine monitoring of awards by ethnicity and language spoken is needed.