Capturing Unmet Therapy Need Among Young Children With Developmental Delay Using National Survey Data

Estimates of unmet therapy need based on parent report overlook the unmet needs of children with developmental delay (DD) whose parents do not first recognize a need for therapy. Using national survey, data we: 1) identified children with DD who likely need physical, occupational, or speech therapy services; 2) estimated the prevalence of overall unmet therapy need; and 3) examined factors associated with unrecognized therapy need and parent-reported unmet therapy need.

Criteria for DD were applied to children aged 0 to 4 years using the 2009-2010 National Survey of Children With Special Health Care Needs (NS-CSHCN). Multivariate logistic regression was used to identify factors associated with unrecognized or parent-reported unmet therapy need.

Among 5349 children with special health care needs aged 0 to 4 years, 50.2% met our inclusion criteria for DD, 21.6% had overall unmet therapy need, 15.4% had unrecognized therapy needs, and 6.2% had parent-reported unmet therapy need. The adjusted odds of unrecognized therapy need were higher among black and Hispanic children, and children from other racial or ethnic groups than among white children (adjusted odds ratio 1.78 [95% confidence interval 1.23-2.57]). The odds of parent-reported unmet therapy need were higher for children lacking special education services.

Relying on parent-reported unmet therapy need, without considering children with DD whose therapy needs go unrecognized, likely underestimates overall unmet therapy need among children with DD. Exploring the mechanisms underlying racial, ethnic, and socioeconomic disparities in overall unmet therapy need should facilitate the development of effective interventions aimed at improving therapy access for children with DD.