Understanding Natural Supports in Diverse Adults With Intellectual and Developmental Disabilities Across Life Domains.

Although natural supports benefit individuals with intellectual and developmental disabilities (IDD), little is known about natural support provided within specific life domains or how race/ethnicity or support from professionals impacts the extent of natural support one receives. In this study, 518 parents of adults with IDD responded to a national survey about natural supports, including who provides support, the number of supporters, and variables that predict natural supports. Family most often provided support, although professionals and family friends were frequent supporters in several domains. Natural support was most extensive in health, least extensive in employment and housing. Individuals with IDD who regularly participated in daytime activities and/or identified as Black had more extensive natural support. Implications are discussed.

Applicants to a Special Education Advocacy Training Program: "Insiders" in the Disability Advocacy World.

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.

Revisiting the social validity of services rendered through a university-based practicum addressing challenging behavior.

This paper represents the third in a three-part series intended to challenge the social validity of the services provided by a university-based practicum for addressing the challenging behavior of individuals with disabilities. In this paper, we surveyed referring stakeholders (e.g., parents, teachers) of past service recipients to explore the acceptability of the service model's goals, methods, and outcomes. We probed for tensions resultant from the model's threefold mission (service, training, and research) and explored how conflicts between these goals affected the quality of our services. Generally, results were favorable and appeared to support continued model implementation, but not without qualification. Emergent themes, areas for improvement, and future directions for intervention research are all discussed.

Training Healthcare Professionals to Work With People With Intellectual and Developmental Disabilities.

This study assessed 155 healthcare providers, from nine disciplines, who work professionally with people with intellectual and developmental disabilities (IDD). Using a national, web-based survey, respondents rated their experience, comfort, and competence in treating individuals with different disability types and preferred methods of continuing education; respondents also provided suggestions for attracting others to work with the IDD population. Findings revealed that experiences, comfort, and competence were all higher concerning persons with autism spectrum disorder (ASD) and intellectual disability (ID), lower for those with deaf-blindness. Overall, levels of experience exceeded levels of comfort, which in turn exceeded levels of competence. The most helpful venues for continued training involved day-to-day contact with persons with IDD, which also characterized open-ended responses. Research and practical implications are discussed.

Ed Zigler's developmental approach to intellectual disabilities: Past, present, and future contributions.

Comprising two parts, Ed Zigler's developmental approach has greatly influenced how one conceptualizes children with intellectual disabilities (ID). In part one, Zigler championed a "two-group approach" concerning the cause of children's ID. He distinguished persons with a clear, organic cause of their ID from those displaying no clear cause. Members of this "organic" group often displayed IQs below 50 and co-occurring physical-medical conditions. The second, "cultural-familial" group, mostly showed IQs of 50-70, did not possess co-occurring physical or health problems, and often came from families of lower IQs and lower socioeconomic status. While the presence of these two groups has been supported, recent advances have also further differentiated the organic group, mostly in relation to behavioral phenotypes of persons with several genetic etiologies. In part two, Zigler championed the child with ID as a "whole person." Originally focused on the child's reactions to social deprivation and failure, recent studies directly examine parent-child, within-family, and wider system interactions throughout the life span. For decades a force within the ID field, Zigler's developmental approach to children with ID continues to influence researchers, interventionists, and policymakers.

The Sibling-in-Law: Understanding an Unknown Member of the Disability Community.

Little attention has focused on siblings-in-law, the spouses of siblings of people with disabilities. Using an online survey, 102 siblings-in-law provided information concerning themselves, their spouses, in-law family, and experiences. Overall experiences were rated as positive (51.0%), mixed (34.3%), or negative (14.7%). Compared to respondents with negative outcomes, respondents with positive and mixed outcomes felt being a sibling-in-law more positively impacted their marriage, relationship with in-laws, parenting, desire to advocate, and career. Before marriage, these two groups better understood sibling-in-law responsibilities and reported less worry about marrying into a family with a member with disabilities or having children with disabilities. In open-ended reflections, 1/3 of respondents discussed family dynamics; improving disability knowledge; future planning; and marriage considerations. Practice and research implications are discussed.

Families Requesting Advocates for Children With Disabilities: The Who, What, When, Where, Why, and How of Special Education Advocacy.

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.

Pulling back the curtain: Issues in conducting an intervention study with transition-aged youth with autism spectrum disorder and their families.

The transition from high school to adulthood is difficult for youth with autism spectrum disorder and their families. Recognizing these challenges, there is a small but emerging body of literature testing interventions to improve the transition process. But there are many challenges in performing intervention research that have yet to be fully addressed. We discuss issues that should be considered when conducting interventions with individuals with autism spectrum disorder to improve the transition to adulthood, drawing from our study of a parent training to facilitate access to adult services during the transition years. Issues covered include (1) timing (when is an intervention most effective?), (2) mode of delivery (what is the best way to present information?), (3) outcomes (how can intervention outcomes be accurately measured?), (4) target population (who is the intervention designed to help?), and (5) level of intervention (who should the intervention target?). Our answers, though preliminary, show the need to be flexible, to adopt a trial-and-error stance, and to listen to the needs-both explicit and implicit-of youth with autism spectrum disorder and their parents as they navigate the difficult transition from adolescence to adulthood.

Who Helps? Characteristics and Correlates of Informal Supporters to Adults With Disabilities.

This study examined who provides informal (or unpaid) supports to people with intellectual and developmental disabilities (IDD). Participants included 657 adult siblings of people with disabilities who responded to a national survey about informal supports in the areas of recreation, employment, and housing. Results indicated that most people with IDD received informal supports, with parents and sibling respondents most often providing those supports. Support was most commonly received in recreation, as opposed to housing or employment. Asked to list nonfamily informal supporters, respondents often mentioned paid staff and disability organizations. Correlates of total numbers of informal supporters included the individual with disability's functioning level and parents' ability to care for their offspring with disabilities.

Correlates of Sustained Volunteering: Advocacy for Students with Disabilities.

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.

Training Parents of Youth with Autism Spectrum Disorder to Advocate for Adult Disability Services: Results from a Pilot Randomized Controlled Trial.

This study presents findings from a pilot randomized controlled trial, testing a 12-week intervention to train parents of youth with autism spectrum disorder (ASD) to advocate for adult disability services-the Volunteer Advocacy Program-Transition (VAP-T). Participants included 41 parents of youth with ASD within 2 years of high school exit, randomly assigned to a treatment (N = 20) or wait-list control (N = 21) group. Outcomes, collected before and after the intervention, included parental knowledge about adult services, advocacy skills-comfort, and empowerment. The VAP-T had acceptable feasibility, treatment fidelity, and acceptability. After participating in the VAP-T, intervention parents (compared to controls) knew more about the adult service system, were more skilled/comfortable advocating, and felt more empowered.

Relating stress of mothers of children with developmental disabilities to family-school partnerships.

Although mothers of children with intellectual and developmental disabilities (IDD) experience high levels of stress and schools constitute an important resource, the relation remains unknown between maternal stress and educational services. Responding to a national, web-based survey, 965 mothers of students with disabilities completed a 163-item questionnaire about parent stress. We examined which child, parent, and parent-school characteristics correlated with maternal stress. Mothers with lower stress levels reported better parent-school relationships and low levels of parent advocacy. However, lower stress levels were predominantly shown by mothers with good-to-excellent parent-school relationships (vs. poor-to-fair partnerships) and who engaged in virtually no (vs. any) advocacy activities. Lower maternal stress levels were also noted when children had fewer behavior problems, Down syndrome, and did not have autism. Less stress was also reported by mothers who had not enacted procedural safeguards, were minorities, and rated themselves lower on neuroticism and were more extroverted, dependable, and open to new experiences. This study has important implications for practitioners and researchers.

Differences in Social Vulnerability among Individuals with Autism Spectrum Disorder, Williams Syndrome, and Down Syndrome.

Although individuals with disabilities are at increased risk of victimization, few studies examine persons with different disability conditions to determine whether distinctive cognitive-behavioral profiles are associated with different levels of social vulnerability. To determine the differences in social vulnerability and experiences of victimization, caregiver responses to a Social Vulnerability Questionnaire were examined for 103 caregivers of individuals with autism spectrum disorder (ASD), Williams syndrome (WS), and Down syndrome (DS). Although all three groups experienced similar rates and types of victimization, the specific correlates of social vulnerability differed by disability. Individuals with ASD displayed less risk awareness and had less social protection; those with WS were rated higher on risk factors related to perceived vulnerability and parental independence; and those with DS had less risk awareness and were perceived to be more vulnerable. Safety interventions should be tailored to address each group's specific correlates of social vulnerability.

Deaths among children, adolescents, and young adults with Down syndrome.

BACKGROUND: Although life expectancies in Down syndrome (DS) have doubled over the past 3-4 decades, there continue to be many early deaths. Yet, most research focuses on infant mortality or later adult deaths. MATERIALS AND METHODS: In this US study, hospital discharge and death records from the state of Tennessee were linked to examine 2046 hospitalized individuals with DS (85 died) in three age groups: children (1-9), adolescents (10-19) and young adults (20-29). RESULTS: Most deaths occurred to young adults, while children had the most hospitalizations. Leading causes of death were cardiovascular and pulmonary conditions, and patients who died had longer hospital stays. Proportions of female deaths rose in young adulthood, and disproportionately more African Americans died at each age period. CONCLUSION: Mortality is high among young adults with DS. Special vigilance is needed for individuals with DS who are female, African American and in their 20s.

Genetic disorders of intellectual disability: expanding our concepts of phenotypes and of family outcomes.

Over the past two decades, great strides have been made in our understandings of how genetic conditions influence behavior and how such so-called "behavioral phenotypes" influence parent and family stress and coping. In this paper, we call for expansions in two directions. First, as a field we need to go beyond behavior in our concepts of phenotypes, to also include the many medical, physical, and other "non-behavioral" phenotypes that influence children's everyday lives. Second, in examining how etiology-related phenotypes affect others, we need to go beyond the outcome of parental stress. In this regard, we focus on parental health, well-being, and various life choices, as well as how parenting children with specific genetic disorders can often lead to positive perceptions and outcomes. We end by discussing remaining research issues and how these two expansions relate to clinical practice.

Characteristics of inclusive faith communities: a preliminary survey of inclusive practices in the United States.

BACKGROUND: Although participation in faith communities is important to many individuals with disabilities, few studies have examined differences between communities that are more (versus less) inclusive. This study investigated characteristics of faith communities in the United States related to greater inclusion. METHODS: Participants were 160 respondents to an anonymous survey about inclusion. Survey items grouped together to form three inclusion-related outcomes: the degree to which faith communities welcome and include individuals with disabilities; the roles and contributions of congregants with disabilities; and physical accessibility. RESULTS: Across these outcomes, more inclusive communities (i) featured faith leaders who were more committed to inclusion; (ii) used educational resources to address disability-related issues; (iii) portrayed people with disabilities positively in their religious teachings; (iv) had stronger ties to disability organizations; and (v) had a stronger orientation towards promoting social justice. CONCLUSIONS: These five characteristics have important implications for promoting inclusion in faith communities.

Predictors of future caregiving by adult siblings of individuals with intellectual and developmental disabilities.

With the growing life expectancy for individuals with intellectual and developmental disabilities, siblings will increasingly assume responsibility for the care of their brother or sister with intellectual and developmental disabilities. Using a 163-item survey completed by 757 siblings, the authors identified factors related to future caregiving expectations. Siblings expected to assume greater caregiving responsibility for their brother or sister with disabilities if they were female, had closer relationships with and lived closer to their brother or sister with intellectual and developmental disabilities, and were the lone sibling without a disability. Siblings who expected to assume higher levels of caregiving had parents who were currently more able to care for their brother or sister with disabilities. With a better understanding of who intends to fulfill future caregiving roles, support can be provided to these siblings.

Doing nothing: adults with disabilities with no daily activities and their siblings.

A significant concern of parents and professionals is that adults with intellectual and developmental disabilities will go without regular educational-vocational activities. The authors examined predictors of such inactivity in individuals with intellectual and developmental disabilities, as well as how inactivity related to their sibling's well-being and the sibling relationship. Participants included 796 siblings of adults with intellectual and developmental disabilities who responded to a web-based survey. Nearly 13% of adults with intellectual and developmental disabilities were without daytime activities; these adults had more emotional-behavioral and health problems, were more underserved by the formal service system, and had parents who were less able to provide care. Although siblings of adults without activities reported more depressive symptoms, worse health, and less close sibling relationships, inactivity no longer predicted these problems after controlling for characteristics that predisposed adults with intellectual and developmental disabilities to have no activities.

Subsequent births in families of children with disabilities: using demographic data to examine parents' reproductive patterns.

The authors determined family reproductive patterns after the birth of a child with (vs. without) a disability. Using Tennessee birth records, the authors examined families of children with Down syndrome (N  =  1,123), spina bifida (N  =  368), and population group (N  =  734,189). Families of children with Down syndrome and with spina bifida were more likely to have subsequent children and larger family sizes than the population group. When a 1st-born target child was born, 28.8% of families had a 2nd child in the population group compared with 37.1% and 45.7% when the child had spina bifida or Down syndrome, respectively. Families of children with disabilities were more likely to have subsequent children regardless of maternal race, marital status, and educational level.

Chronic stress and health among parents of children with intellectual and developmental disabilities.

PURPOSE OF REVIEW: This article reviews recent studies connecting chronic stress to health outcomes in parents of children with intellectual and developmental disabilities (I/DD). This review is timely owing to the increased rates of certain I/DD conditions and the adverse effects that chronic stressors may have on parental health. RECENT FINDINGS: Although parents raising children with (versus without) I/DD have long reported greater levels of psychological stress, only recently have parental physical health problems been linked to aspects of the child with I/DD. SUMMARY: Chronic stressors can wear down the body, particularly the cardiovascular, immune, and gastrointestinal systems. So far, increased rates of caregiver health problems have been linked to caring for an elderly parent or for a child with recurrent cancer. Parents of children with I/DD also more often encounter severe, chronic stressors, particularly those involving child behavior problems and extreme caregiving need. These child characteristics, especially for older parents or for parents of children with certain conditions (e.g. spina bifida), may adversely affect parental health. More research is needed to explore stress-health connections among parents of children with I/DD, as well as the clinical and policy implications of such findings.