Deserving but not entitled: The social construction of autism spectrum disorder in federal policy.

Public policies play an influential role in shaping public opinion about health conditions, who is affected by them, and potential pathways for identification and intervention. This study draws upon a social constructionist perspective of policy design and disability to examine how autism spectrum disorder (ASD) has been framed in United States federal legislation. Qualitative content analysis of autism legislation passed between 1973 and 2019 indicates that policies reinforced ASD as a largely medicalized, neurobiological condition of childhood; this was reflected in both the policy aims, sources of knowledge and groups prioritized to address ASD; and the symbolic or material resources committed (or not committed) by enacted federal legislation to specific constituencies. Policy aims of early ASD legislation were symbolic in nature, focusing predominantly on framing children with ASD as a group worthy of public recognition. More recent legislation, in contrast, conferred material resources - albeit in targeted ways. Funding for surveillance and medical research on causation, early detection, treatment, and health professional training were prioritized with little attention to either service delivery needs of individuals with ASD and their families, supports over the lifecourse, or the social factors influencing ASD.

Mapping mental health inequalities: The intersecting effects of gender, race, class, and ethnicity on ADHD diagnosis.

While the effects of social stratification by gender, race, class, and ethnicity on health inequalities are well-documented, our understanding of the intersecting consequences of these social dimensions on diagnosis remains limited. This is particularly the case in studies of mental health, where "paradoxical" patterns of stratification have been identified. Using a Bayesian multi-level random-effects Poisson model and a nationally representative random sample of 138,009 households from the National Survey of Children's Health, this study updates and extends the literature on mental health inequalities through an intersectional investigation of one of the most commonly diagnosed psychiatric conditions of childhood/adolescence: attention-deficit hyperactivity disorder (ADHD). Findings indicate that gender, race, class, and ethnicity combine in mutually constitutive ways to explain between-group variation in ADHD diagnosis. Observed effects underscore the importance and feasibility of an intersectional, multi-level modelling approach and data mapping technique to advance our understanding of social subgroups more/less likely to be diagnosed with mental health conditions.

"In the driver's seat": Parent perceptions of choice in a participant-directed medicaid waiver program for young children with autism.

This study investigated families' experience of choice within a participant-directed Medicaid waiver program for young children with autism. Fourteen parents or grandparents participated in in-depth interviews about their experience of choosing personnel, directing in-home services, and managing the $25,000 annual allocation. Key findings included families' preference to hire providers with whom they have a prior relationship, parent empowerment and differences of opinion about parents as teachers. Professionals implementing participant directed service models could benefit from understanding the strong value parents' placed on the personalities and interpersonal skills of providers. Parents' descriptions of directing rather than merely accepting autism services revealed increased confidence in their ability to choose and manage the multiple components of their children's HCBS autism waiver program.

Unmet need and problems accessing core health care services for children with autism spectrum disorder.

To investigate the health care experiences of children with autism spectrum disorder, whether they have unmet needs, and if so, what types, and problems they encounter accessing needed care. We address these issues by identifying four core health care services and access problems related to provider and system characteristics. Using data from the 2005-2006 National Survey of Children with Special Health Care Needs (NS-CSHCN) we compared children with autism spectrum disorder with children with special health care needs with other emotional, developmental or behavioral problems (excluding autism spectrum disorder) and with other children with special health care needs. We used weighted logistic regression to examine differences in parent reports of unmet needs for the three different health condition groups. Overall unmet need for each service type among CSHCN ranged from 2.5% for routine preventive care to 15% for mental health services. After controlling for predisposing, enabling and need factors, some differences across health condition groups remained. Families of children with autism spectrum disorder were in fact significantly more at risk for having unmet specialty and therapy care needs. Additionally, families of children with autism spectrum disorder were more likely to report provider lack of skills to treat the child as a barrier in obtaining therapy and mental health services. Disparities in unmet needs for children with autism suggest that organizational features of managed care programs and provider characteristics pose barriers to accessing care.

Satisfaction and sense of well being among Medicaid ICF/MR and HCBS recipients in six states.

Self-reported satisfaction and sense of well-being were assessed in a sample of 1,885 adults with intellectual and developmental disabilities receiving Medicaid Home and Community Based Services (HCBS) and Intermediate Care Facility (ICF/MR) services in 6 states. Questions dealt with such topics as loneliness, feeling afraid at home and in one's neighborhood, feeling happy, feeling that staff are nice and polite, and liking one's home and work/day program. Loneliness was the most widespread problem, and there were also small percentages of people who reported negative views in other areas. Few differences were evident by HCBS and ICF/MR status. The findings document consistent benefits of residential support provided in very small settings-with choices of where and with whom to live-and to individuals living with family.

Choice-making among Medicaid HCBS and ICF/MR recipients in six states.

Choice in everyday decisions and in support-related decisions was addressed among 2,398 adults with intellectual and developmental disabilities receiving Medicaid Home and Community Based Services (HCBS) and Intermediate Care Facility (ICF/MR) services and living in non family settings in six states. Everyday choice in daily life and in support-related choice was considerably higher on average for HCBS than for ICF/MR recipients, but after controlling for level of intellectual disability, medical care needs, mobility, behavioral and psychiatric conditions, and self-reporting, we found that choice was more strongly associated with living in a congregate setting than whether that setting was HCBS- or ICF/MR-financed. Marked differences in choice were also evident between states.

Factors associated with expenditures for medicaid home and community based services (HCBS) and intermediate care facilities for persons with mental retardation (ICF/MR) services for persons with intellectual and developmental disabilities.

This article examines expenditures for a random sample of 1,421 adult Home and Community Based Services (HCBS) and Intermediate Care Facility/Mental Retardation (ICF/MR) recipients in 4 states. The article documents variations in expenditures for individuals with different characteristics and service needs and, controlling for individual characteristics, by residential setting type, Medicaid program (ICF/MR or HCBS), and state. Annual average per-person Medicaid expenditures for HCBS recipients were less than those of ICF/MR residents ($61,770 and $128,275, respectively). HCBS recipients had less severe disability (intellectual, physical, health service needs) than ICF/MR residents. Controlling these differences, and for congregate settings, HCBS were less costly than ICFs/MR, but this distinction accounted for only 3.3% of variation in expenditures. Persons living with families receiving HCBS ($25,072) and in host families (including foster, companion, or shared living arrangements; $44,112) had the lowest Medicaid expenditures.

Loneliness and living arrangements.

Adults with ID/DD live in increasingly small community settings, where the risk of loneliness may be greater. We examined self-reported loneliness among 1,002 individuals with ID/DD from 5 states in relation to community residence size, personal characteristics, social contact, and social climate. One third reported being lonely sometimes and one sixth said they were often lonely, but loneliness was not more common for people living alone or in very small settings. More loneliness was reported by residents of larger community living settings of 7 to 15 people. More social contact and liking where one lives were associated with less loneliness. Social climate variables, such as being afraid at home or in one's local community, were strongly associated with greater loneliness.

Evaluation of a cancer pain education module.

PURPOSE/OBJECTIVES: To assess whether a case-based cancer pain education module would lead to acquisition and retention of knowledge and attitudes at the graduate nursing student level. DESIGN: Quasi-experimental pretest, post-test, and follow-up. SETTING: Three nursing schools in the New England area. SAMPLE: 92 graduate nursing students. METHODS: An oncology nurse specialist delivered seven two- to four-hour seminars integrated in existing pharmacology, primary care, or adult health courses. Participants' cancer pain knowledge was assessed at four time points with a paper-and-pencil test: before the seminar, immediately after, and approximately 6 and 24 months after the seminar. MAIN RESEARCH VARIABLE: Cancer pain knowledge. FINDINGS: The intervention was effective in improving students' knowledge of cancer pain management and assessment (p = 0.0001), and the effect was retained at 6 and 24 months (p = 0.0001 and p = 0.0024, respectively). CONCLUSIONS: Policymakers, clinicians, and professional organizations have recommended providing cancer pain education during professional training to overcome the continuing problem of the undertreatment of cancer pain. The education module used was effective in changing students' knowledge of cancer pain management, and the results suggest that this knowledge is lasting. IMPLICATIONS FOR NURSING: Early cancer pain education for nurses may play an important role in improving pain control for patients with cancer. Although this study did not evaluate the application of cancer pain knowledge to clinical practice, the results support the notion that advanced practice nurses can improve their cancer pain management knowledge and attitudes while in training. One implication is that this shift in attitudes and knowledge will translate to effective management of pain in varied healthcare settings.