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.

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.

A population-based examination of maltreatment referrals and substantiation for children with autism spectrum disorder.

Children with disabilities experience elevated rates of maltreatment, but little is known about the interaction of children with autism spectrum disorder with child protection systems. A population-based dataset of 24,306 children born in 2008 in Tennessee, which included 387 children with autism spectrum disorder identified through the Autism and Developmental Disabilities Monitoring network, was linked with state child protection records. Rates of maltreatment referrals, screening for further action, and substantiated maltreatment were examined for children with versus without autism spectrum disorder. Significantly more children with autism spectrum disorder (17.3%) than without (7.4%) were referred to the Child Abuse Hotline. Children with autism spectrum disorder were less likely than children without autism spectrum disorder to have referrals screened in for further action (62% vs 91.6%, respectively), but substantiated maltreatment rates were similar across groups (3.9% vs 3.4%, respectively). Girls versus boys with autism spectrum disorder were more likely to have substantiated maltreatment (13.6% vs 1.9%, respectively). The high percentage of children with autism spectrum disorder referred for allegations of maltreatment, the differential pattern of screening referrals in for further action, and the high levels of substantiated maltreatment of girls with autism spectrum disorder highlights the need for enhanced training and knowledge of the complex issues faced by children with autism spectrum disorder, their families, and state welfare agencies.

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.

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.

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.

Adult female and male siblings of persons with disabilities: findings from a national survey.

In this study, the authors used a national, Web-based survey to examine female and male siblings of individuals with disabilities. More than 1,160 adult siblings completed a 163-question survey about themselves, their siblings, and their sibling relationships. Most respondents reported fairly close contact with their siblings and positive sibling relationships, good health, and benefits from being a sibling to a brother-sister with disabilities. Compared with men, women reported benefiting more from the sibling relationship. Relative to the U.S. population, female (though not male) siblings married later and divorced less often, and these women had their first child at later ages. Implications are discussed regarding future research and service needs.

Testing structural models of DSM-IV symptoms of common forms of child and adolescent psychopathology.

Confirmatory factor analyses were conducted of Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) symptoms of common mental disorders derived from structured interviews of a representative sample of 4,049 twin children and adolescents and their adult caretakers. A dimensional model based on the assignment of symptoms to syndromes in DSM-IV fit better than alternative models, but some dimensions were highly correlated. Modest sex and age differences in factor loadings and correlations were found that suggest that the dimensions of psychopathology are stable across sex and age, but slightly more differentiated at older ages and in males. The dimensions of symptoms were found to be hierarchically organized within higher-order "externalizing" and "internalizing" dimensions, which accounted for much of their variance. Major depression and generalized anxiety disorder were substantially correlated with both the "externalizing" dimension and the "internalizing" dimension, however, suggesting the need to reconceptualize the nature of these higher-order dimensions.

Divorce in families of children with Down syndrome: a population-based study.

In this study, we examined the nature, timing, and correlates of divorce in families of children with Down syndrome (647), other birth defects (10,283) and no identified disability (361,154). Divorce rates among families of children with Down syndrome were lower than in the other two groups. When divorce did occur in the Down syndrome group, however, a higher proportion occurred within the first 2 years after the child's birth. Mothers and fathers of children with Down syndrome were much more likely to divorce if they were younger, had not graduated from high school, and if fathers were less educated and lived in a rural area. Few effects on divorce were noted for a variety of family structure variables.

Using an epidemiological approach to examine outcomes affecting young children with Down syndrome and their families.

In this paper, we utilise an approach drawn from the field of epidemiology to explore what is known and unknown about young children with Down syndrome and their families. After describing what we mean by an epidemiological approach, we review basic findings for children with intellectual disabilities, as well as challenges to performing such research. In considering the epidemiology of Down syndrome, we note that most studies to date have focused on prevalence, mortality-life expectancy, and rates of diseases and syndrome-related health-physical problems, while neglecting many other important issues. In considering potential advances in the epidemiology of Down syndrome, then, we first overview the process of linking two or more separate administrative records, before reviewing several of our own recent studies. We end this paper by discussing four challenges to future epidemiological studies of children with Down syndrome and their families.