Increasingly, parents are relying on advocates to ensure that children with disabilities receive appropriate educational services. As agencies begin to train advocates to work with families, it is necessary to evaluate the efficacy of such advocacy training programs. This study evaluated the efficacy of the Volunteer Advocacy Project (VAP), a 40‐h training workshop that has been delivered since 2008 to six cohorts live and via webcasts. The aim of the study was to determine whether the VAP increased the knowledge and advocacy skills of its trainees and how trainee and training characteristics related to the effectiveness of the training. This study examined changes from pretest to posttest knowledge and advocacy skills of 90 trainees of the VAP. We also examined interactions between pre/post change and trainee and training characteristics. Participants demonstrated significant gains from pre‐ to posttests in their knowledge of special education and in their advocacy skills. Those participants who partook of the training in latter cohorts and at distance sites showed more progress in special education knowledge. Increases in advocacy skills differed by type of participant: compared to parent participants, professionals demonstrated significantly greater pre/post test increases in advocacy skills. This study has important implications for researchers, practitioners, and policymakers.
Objective To examine the amount, timing and causes/correlates of infant mortality among newborns with Down syndrome. Methods Using the Tennessee Department of Health Birth, Hospital Discharge and Death records, infants were identified who were born with Down syndrome from 1990 to 2006. Those who died during the first year were separated into three groups (first day death, neonatal mortality, postneonatal mortality) and data from the Birth and Death records were used to compare the three death groups and the survival group on correlates of mortality. Results Of 1305 infants born in Tennessee with Down syndrome from 1990 to 2006, 97 died within the first year, for a mortality rate of 74 per 1000. Most Down syndrome infant deaths occurred during the post-neonatal period (56%), although many occurred during the first day (27%). Newborns who died during the first day had significantly lower birthweight, 5-min Apgar scores and gestational lengths, whereas those who died in the post-neonatal period had significantly more heart-related causes of death (all Ps < 0.001).No associations were found in this sample between increased infant mortality and maternal age, education, race, marital status or familial urban residence.Conclusions Infants with Down syndrome experience high rates of mortality occurring at three distinct times during the first year. These groupings are tied to specific, different causes of death.
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