Samantha E. Goldman

Determining the amount, timing and causes of mortality among infants with Down syndrome

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, post-neonatal 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.

Health Outcomes of Infants and Toddlers with Down Syndrome

Abstract Reviewing large-scale, population-based studies, this chapter summarizes three health outcomes for young children with Down syndrome: (1) adverse birth outcomes (e.g., prematurity, low birthweight); (2) in-patient hospitalizations; and (3) early mortality. Prematurity and low birthweight occur several times more often among newborns with (vs. without) Down syndrome, and account for 14–25% of all newborns with the syndrome. From 1/2 to 3/4 of these infants experience nonbirth hospitalizations within their first 3 years, most beginning during their first year. Those infants with congenital heart defects experience hospitalization more often, earlier, and for longer periods; respiratory problems constitute the main reason for hospitalizations among children with (and without) heart defects. Newborns with Down syndrome die before their first birthday from 4 to 24 times more often than other newborns; congenital heart defects, African American mothers, and prematurity are the major risk factors. Future studies need to identify child, parent, and family risk factors for early health outcomes, tie health outcomes to medical services, and determine the influence on early health of pollution and other environments. Better data and data-linkage are also needed. With an expanded research base, physicians will be able to provide more precise anticipatory guidance to parents, early interventionists, and others who care for young children with Down syndrome.

Identifying the Associated Factors of Mediation and Due Process in Families of Students with Autism Spectrum Disorder

Compared to families of students with other types of disabilities, families of students with autism spectrum disorder (ASD) are significantly more likely to enact their procedural safeguards such as mediation and due process. However, we do not know which school, child, and parent characteristics are associated with the enactment of safeguards. For this study, 507 parents of students with ASD responded to a national web-based survey. Parents who filed for due process or mediation were more likely to advocate for their child, have poor family-school partnerships, and have greater household incomes. Parents were also more likely to utilize their safeguards if their children were older, experiencing more internalizing behaviors, and educated in segregated placements. Implications for research and practice are discussed.

Documenting the Experiences of Special Education Advocates

Many parents struggle to advocate for their children with disabilities to obtain services at school. Subsequently, parents may turn to special education advocates to help ensure that their children receive appropriate services. However, it is unclear how special education advocates support families and secure services for children with disabilities. Before determining whether special education advocacy is effective, the advocacy process used by special education advocates needs to be understood. In this study, 33 special education advocates participated in individual interviews about advocacy. Participants reported that they used an advocacy process with five main stages: developing rapport with the parent, establishing clear expectations, learning about the child and the family, educating and empowering the parent, and participating in Individualized Education Program (IEP) meetings. Details about the advocacy process are provided, and implications for future research, policy, and practice are discussed.

Correlates of Sustained Volunteering: Advocacy for Students with Disabilities

ABSTRACT Parents of students with disabilities often receive support from special education advocates, who may be trained through a variety of programs. Using a web-based survey, this study examined the postgraduation advocacy activities of 83 graduates of one such volunteer advocacy training program. In the one to four years after program graduation, 63.8% (53 of 83) of the graduates advocated for one or more families; these sustained advocates reported stable rates of advocacy over time, and advocates performed activities that were either family-focused or school-focused. For graduates who advocated post-training, amounts of advocacy were positively related to satisfaction with advocating and with higher levels of involvement with other advocates and with the broader disability community. Compared to those not advocating after graduating, sustained advocates reported greater advocacy-role identities, increased involvement in disability groups, and higher likelihood to advocate in the upcoming year. Future research and practice implications are discussed.

Facilitated Individualized Education Planning The State of Implementation and Evaluation

Facilitated individualized education planning (FIEP) presents an alternative to formalized dispute resolution procedures, which can have damaging financial and relational consequences for families and schools. Although recommended as an alternative dispute resolution practice, minimal research has examined its implementation and evaluation. In this study, we described where and how FIEP was being implemented and what types of data state educational agencies (SEAs) implementing FIEP were collecting. In two phases, we contacted representatives of each SEA in the United States, asking them to complete a survey on their state’s use of FIEP, and then to share outcome and participant feedback data and data collection forms. From 43 responses in the first phase, we found that almost half of SEAs are using FIEPs (n = 24), and of those not currently using FIEP, 12 were considering implementing the practice in the future. In the second phase of the study, we found that six states that responded to the request for data captured similar content on meeting outcomes and participant feedback. Outcome data provided preliminary, initial evidence for the potential effectiveness of FIEP in achieving positive outcomes in the form of agreement or consensus regarding IEPs. Implications for practice, research, and policy are discussed.

Using Secondary Datasets in Disability Research: Special Issues, Special Promise

Abstract This chapter describes how secondary datasets and analyses can be helpful within the field of intellectual and developmental disabilities. Beginning with definitional issues, we discuss the ways in which secondary datasets have both advantages (cost-effective data collection, personal advantages, growing numbers of such datasets) and disadvantages (researcher not involved in sampling procedures, constructs examined, or questions posed). Recent years have seen increasing numbers of intellectual disability articles analyzing large-scale databases, but the subfield retains a feel of being wide but shallow. Current initiatives focus on generating registries, databanks, and other large-scale datasets, and we describe here three such initiatives (Project IAN, National Fragile X Survey, NDAR). Increasingly, large-scale, secondary datasets are helping researchers address the need for information concerning individuals with intellectual disabilities and their families.