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.

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.

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.

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.

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.