Toilet Training in Children and Adolescents with Down Syndrome.

OBJECTIVES: Although the challenges of toilet training for children and adolescents with Down syndrome (DS) are well-known, details such as specific associations with comorbidities and related exacerbating factors are lacking. This study aims to characterize the nature of toilet training in a cohort of children and adolescents with DS and evaluate characteristics and comorbid conditions that may contribute to or prolong toilet training success in those with DS. METHOD: This was a retrospective, cross-sectional study investigating toilet training in children and adolescents with DS. A survey was completed by 137 patients' parents or guardians as part of their care experience in the clinic. RESULTS: Although toilet training on average began at age 3.40 years (SD = 1.47), children and adolescents with DS typically began telling caregivers they needed to use the toilet at 4.80 years (SD = 2.11), no longer used diapers during the day at 5.03 years (SD = 1.98) and night at 5.88 years (SD = 2.48), and were described by their caregivers as being fully toilet trained at 6.60 years (n = 28; SD = 2.43; range = 3.00-14.00 years). There was a linear trend in the age groups between 2 to 4 years (n = 37), 5 to 7 years (n = 42), 8 to 12 years (n = 39), and 13 to 17 years (n = 19) and the proportion of children and adolescents fully toilet trained (2 to 4 years = 0.040, 5 to 7 years = 0.211, 8 to 12 years = 0.278, and 13 to 17 years = 0.529). Typical readiness signs that children and adolescents with DS display and those most predictive of toileting success are reported. Placing the child on a schedule was the most successful (45.2%) training method identified by parents, with 55.8% of the families trying this approach. Children and adolescents aged 8 to 12 years with behavioral challenges were more likely (75.0%) to have daytime accidents compared with those without (25.9%), p = 0.006. CONCLUSION: Children and adolescents with DS in this sample started toilet training at 3.4 years and completed toilet training at 6.6 years. Even after completing toilet training, many children and adolescents continue to require support from their caregivers with some aspects of toilet training. Skill loss associated with various life events, behavioral challenges, medical diagnoses, and inconsistencies in toileting expectations across settings are factors caregivers believe contribute to delayed toilet training. Caregivers found that a consistent toileting schedule, using reinforcers, and providing prompting to use the toilet were the most successful methods.

Characterization of Family-Directed Care Coordination and Involvement in Behavioral Treatments in an Autism-Specific Medicaid Waiver.

Services for children with autism spectrum disorder (ASD) and their families have evolved with the advent of the Medicaid waiver, leading to more family-based coordination of care. Evaluating family involvement, the current investigation compared 230 families of children with ASD receiving Medicaid waiver services to a propensity-score matched group of 230 families who were waiting for such services (i.e., registry families). Compared to the registry, waiver families reported more involvement in service planning tasks, but not activities related to future-planning, managing crisis situations, or searching for and securing funding. Additional analyses characterize waiver families as engaging in high levels of coordinating and delivering behavioral interventions for their child. Implications for family burden and future programming for waiver programs are discussed.