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Special education advocacy programs support families to secure services for their children with intellectual and developmental disabilities. Although research demonstrates the efficacy of one such program (the Volunteer Advocacy Project), its effectiveness when replicated by others is unknown. Replication research is critical to ensure that programs can remain effective. The purpose of this study was to explore the adaptation process for two agencies that replicated an advocacy program. Quantitative and qualitative data were collected to examine feasibility, acceptability, and effectiveness. Although it took resources to replicate the advocacy program, agencies reported ongoing implementation would be easier once adaptations were completed. The adapted programs were effective in increasing participants' knowledge, empowerment, advocacy, and insiderness. Implications for research and practice are discussed.

Although social groups have “insiders,” this construct has not been measured within the disability advocacy community. Examining 405 individuals who applied for an advocacy training program, this study examined the nature of insiderness within the disability advocacy community and ties to individual roles. Participants showed differences in mean ratings across 10 insider items. A principal components analysis revealed two distinct factors: Organizational Involvement and Social Connectedness. Non-school providers scored highest on Organizational Involvement; family members/self-advocates highest on Social Connectedness. Themes from open-ended responses supported the factors and showed differences in motivation and information sources across insiderness levels and roles. Qualitative analysis revealed two additional aspects of insiderness not addressed in the scale. Implications are discussed for future practice and research.

The purpose of this systematic review and meta-analysis was to identify and synthesize single-case research examining interventions used to increase the quantity and/or quality of participation by adolescents with disabilities during Individualized Education Program (IEP) meetings. For studies meeting quality indicators, we used visual analysis, Tau-U, and standardized mean difference to synthesize outcomes, including maintenance and generalization of effects. We identified seven studies examining quality of participation and eight studies examining quantity of participation that met our inclusion criteria; however, only three studies from each group met quality standards. Overall, interventions positively influenced student contributions at IEP meetings. When measured, increased quantity and quality of participation maintained over time and generalized to real IEP meetings. Implications for research and practice are discussed.

The remote instruction context presents many challenges for teachers, including managing student behavior. The practice of defining and teaching expectations is considered a high-leverage practice in special education, and should be applied to the remote setting to support the learning of students with and without disabilities. We present four recommended steps for adapting this practice for the remote setting and use a fictional vignette with example materials to demonstrate the process. Additionally, we provide other useful online resources for providing effective online instruction for students with disabilities.

Individualized Education Program (IEP) meetings are an important component of special education; however, few students actually attend and meaningfully participate in their meetings. Using a large-scale national survey, this study examined student attendance and participation at IEP meetings and the predictors of these outcomes. Respondents were 1,183 parents of students with disabilities across all grade levels. Results indicated that only a third of students attended their most recent IEP meeting. Most students who did attend their meeting were not actively participating. Results from a factor analysis of participatory behaviors challenge previous conceptualizations of student participation. Predictors of student involvement included strength of the parent–teacher partnership, as well as certain student characteristics related to grade and disability type. Implications are discussed.

Although typically taught by special educators, few studies have examined if certification area is associated with academic outcomes for students with autism spectrum disorders (ASDs). The purpose of this study was to determine whether students with ASD scored better on language arts and mathematics state assessments depending on teacher certification, and whether these associations varied by assessment type. We analyzed 3 years of state administrative data from students with ASD in grades 4–8 receiving special education services. Results showed students taking the regular or alternate assessment had similar academic outcomes regardless of teacher certification. Students who were taught by special education certified teachers and took the modified assessment had lower academic outcomes. Implications for practice, policy, and research are discussed.

This study examined the effectiveness of interventions used to increase the participation of adolescents with disabilities during individualized education program (IEP) meetings. A systematic literature review and meta-analysis were conducted to identify and synthesize the group-design experimental literature on this topic, as well as evaluate intervention effects. Six studies met inclusion criteria and were included in the analyses. Adolescents who participated in self-advocacy curriculum interventions made significantly more contributions during IEP meetings compared with students in control groups. Given this information, school districts should consider implementing such curricula and making student attendance and participation at IEP meetings a top priority. However, additional high-quality research is needed to expand the evidence base for this practice for students with more severe disabilities.

Although the field of special education advocacy is growing, little is known about the perceptions and goals of individuals who participate in advocacy trainings. It is important to understand why individuals want advocacy training to design more effective programs and determine whether training meets participant expectations. In this study, we evaluated the perceptions of 142 participants who completed the Volunteer Advocacy Project (VAP), a special education advocacy training. Using participants’ responses to open-ended questions on the VAP application, we examined the perceptions of caregivers and professionals to understand their motivations for becoming advocates, their plans for using their newfound knowledge and skills, and their perceptions of the attributes of special education advocates. Findings indicated some key differences between caregivers and professionals in their reasons for becoming advocates and plans for using their newfound knowledge and skills. Participants wanted to become special education advocates to help their own child (if they were caregivers) and to help others. Participants planned to use their newfound knowledge and skills to advocate and to provide service to the community at three levels depending on their role: school, community, and state/national. Finally, regardless of role, participants perceived warmth, competence, and grit to be necessary attributes of successful advocates. Implications for research and practice are discussed.

Because parents face barriers in advocating for their children within the special education system, some families request help from a special education advocate. In this study, we evaluated the perceptions of caregivers who requested advocacy support to understand why, for whom, when, and where the advocacy services were needed; how the advocate helped; and what the outcomes of the advocacy process were and which variables related to better outcomes. We conducted structured interviews with 36 families who had requested help and connected with an advocate over a 3-year period. Compared to national norms, families were more likely to request an advocate if their child had ASD, was in elementary school, and lived in non-rural areas. Family requests were most often for advocate attendance at IEP meetings; help to resolve disagreements with the school concerning supports and services; and information about school services and parental rights. Most advocate assistance was for a short duration, although a longer duration process, advocate attendance at meetings, and more intensive advocate assistance were all related to better outcomes. Most participants were satisfied with the advocate and with the end-result of the advocacy process. Findings are discussed in terms of implications for future research and practice.

Advocacy has long been important in the lives of individuals with intellectual and developmental disabilities (IDD). In special education, parents are expected to advocate on behalf of their child and hold the schools accountable for providing appropriate services and supports. However, not all parents desire to or are able to meet this advocacy expectation. As a result, the field of special education advocacy has emerged, and is growing. To situate a review of the literature on special education advocacy, I first provide a brief overview of special education law, parent rights, and barriers to parent advocacy. Next, I compare the components and evidence-base of several existing special education advocacy trainings, highlighting the need for additional, rigorous efficacy studies. Through a synthesis of the limited body of research on the special education advocacy process and resulting outcomes for students with IDD and their families, I then present a proposed theory of change, and implications for future research and practice. While the need for special education advocacy is unlikely to decrease in the near future, more work is needed to ensure that training organizations, advocates, schools, and families work collaboratively so special education advocates can support families to maximize the outcomes of students with IDD.

Facilitated Individualized Education Program (FIEP) meetings present one option for early, alternative dispute resolution in special education. Although it has been suggested that this process may be useful in resolving disputes and improving relationships, these hypotheses have not been directly addressed. In this study, we used individual participant feedback data collected by a northwestern state over a 2-year period to answer the following research questions: (a) What are the perceived outcomes of FIEP meetings in terms of agreement, reduced future use of procedural safeguards, and improved relationships between school staff and family? and (b) What are the predictors of these positive participant perceptions of the outcomes of FIEP meetings? We found that respondents perceived FIEP meetings to be successful, with more than half of respondents reporting an outcome of full agreement by all team members, 44% reporting reduced future use of procedural safeguards, and 42% reporting an improved relationship between school staff and family following the meeting. Using multilevel models, we found that perceived facilitator quality was a significant predictor of all three positive outcomes, even after controlling for significant meeting characteristics such as region and year. Given these initial findings, we also provide implications for research, practice, and policy.

Low-income, minority families are underrepresented in the literature on parent training for school-aged children with autism spectrum disorder (ASD). Although the use of visual supports, such as vi...

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.

Although parent involvement is required by special education law and is important for all students, the literature synthesizing studies on parent involvement has focused on the general education parent population, often without addressing students with disabilities. The purpose of this review was to descriptively synthesize the literature on parent training interventions to increase parent involvement for parents of school-aged students with disabilities and to evaluate the effects of this intervention using meta-analysis. The literature on parent involvement interventions was minimal, with few recent peer-reviewed studies; all included studies focused on parent involvement in the context of Individualized Education Program (IEP) meetings. Results of the random effects model were not significant, with a weighted mean effect size of 0.26 (95% CI [–1.01, 1.53]). Results are discussed in the context of low heterogeneity across studies and implications for future research, including the need for novel...

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.

In accordance with the Individuals with Disabilities Education Act (IDEA), parents of children with disabilities are expected to be equal partners in the special education process. However, many parents struggle to advocate for their children with disabilities. To this end, parents may learn their special education rights or hire an advocate to ensure their children receive services. Indeed, special education advocacy training programs have become increasingly common. One such advocacy training program is the Volunteer Advocacy Project (VAP). The VAP is a 36-h special education advocacy training program designed to educate and empower individuals, primarily parents of children with disabilities, to become special education advocates. This study examined the feasibility of the VAP. With respect to cost, attendance, attrition, participant satisfaction, and sustainability, the VAP was feasible among program graduates. Implications for research and practice are discussed.

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.

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 post-graduation advocacy activities of 83 graduates of one such volunteer advocacy training program. In the 1–4 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.

Although functional analysis (FA) remains the standard for identifying the function of problem behavior for students with developmental disabilities, traditional FA procedures are typically costly in terms of time, resources, and perceived risks. Preliminary research suggests that trial-based FA may be a less costly alternative. The purpose of this study was to add to the burgeoning evidence on trial-based FA. Working with students with disabilities, school-based paraprofessionals conducted trial-based FAs for four students with developmental disabilities emitting high-frequency problem behavior. We then conducted brief contingency reversals to assess validity of hypotheses derived from the trial-based FA. Results of the present study add to the small but growing evidence base validating the trial-based FA as a practical and flexible alternative to the standard FA in school settings.

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.

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

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.

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.