title: Inequalities in provision of the Disability Living Allowance for Down syndrome.
abstract: OBJECTIVE
  To assess factors associated with granting of the Disability Living Allowance (DLA) for Down syndrome.
  
  
  METHODS
  Cross-sectional survey.
  
  
  METHODS
  Families with a child with Down syndrome enrolled in a community-based trial of vitamin supplementation.
  
  
  METHODS
  156 children with trisomy 21 (59% male, 20% non-white) were enrolled before 7 months of age and 138 completed follow-up.
  
  
  METHODS
  Before the child was 2 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 speaking English. Significantly fewer ethnic minority parents (OR = 0.10; 95% CI 0.03 to 0.35; 69% vs 96%, risk difference 27%) and parents with English as a second language (OR = 0.15: 95% CI 0.04 to 0.62; 67% vs 93%, risk difference 26%) were granted the DLA. Amongst those granted the 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 the 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 the 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.
  
  
  BACKGROUND
  NCT00378456.
authors.affiliation: Centre for Paediatric Epidemiology and Biostatistics, Institute of Child Health, 30 Guilford Street, London WC1N 1EH, UK. j.ellis@ich.ucl.ac.uk
authors.forename: Jill
authors.initials: J
authors.lastname: Ellis
authors.forename: Stuart
authors.initials: S
authors.lastname: Logan
authors.forename: Rachel
authors.initials: R
authors.lastname: Pumphrey
authors.forename: Hooi Kuan
authors.initials: HK
authors.lastname: Tan
authors.forename: William
authors.initials: W
authors.lastname: Henley
authors.forename: Vanessa
authors.initials: V
authors.lastname: Edwards
authors.forename: Robert
authors.initials: R
authors.lastname: Moy
authors.forename: Ruth
authors.initials: R
authors.lastname: Gilbert
mesh_terms: D002675:Child, Preschool; D003430:Cross-Sectional Studies; D004314:Down Syndrome / Q000191:economics* / Q000453:epidemiology; D054242:Emigrants and Immigrants; D005006:Ethnicity; D006801:Humans; D007223:Infant; D008913:Minority Groups; D011446:Prospective Studies; D012946:Social Welfare / Q000191:economics* / Q000706:statistics & numerical data*; D011795:Surveys and Questionnaires; D006113:United Kingdom / Q000453:epidemiology