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Background: Burnout has been considered important to understanding the well-being of workers in the intellectual disabilities (ID) field and the quality of services delivered to clients/consumers. However, little research has examined the psychometric properties and applicability to staff in ID services of one of the most widely used burnout measurements--the Human Services Survey version of the Maslach Burnout Inventory (MBI-HSS). Methods: Data were gathered using a mailed questionnaire comprising the MBI-HSS and demographic information. The sample consisted of 435 staff delivering direct care and working in out-of-home community placements for persons with ID in New York state. The factorial structure of the scale was examined using confirmatory and exploratory factor analysis. Internal consistency estimates of reliability of the MBI-HSS were determined using Cronbach's alpha. Results: Confirmatory factor analysis supported the MBI-HSS as an acceptable measure to evaluate burnout in ID services staff. However, the reliability statistics obtained for the Depersonalization (DP) sub-scale was much lower than what has been reported in studies with other staff populations. An exploratory factor analysis suggested that a four-factor solution, dividing the DP sub-scale into two factors, provided a somewhat better fit for the sample. Conclusions: The use of the MBI-HHS as an instrument for measuring burnout among ID workers has its attraction but also its limitations. In particular, the DP sub-scale should be used with caution because there appear to be wording issues for staff in ID settings that may lead to inconsistent responses.

There have been growing reports of older women and men caring for their grandchildren and great grandchildren. Many of these grandparents are caring for children with developmental disabilities. To systematically examine the effectiveness of a support group intervention for such grandparents, we recruited 97 grandparents through three agencies in New York City and assigned them to treatment and wait list control conditions. Significant reductions in symptoms of depression and increases in sense of empowerment and caregiving mastery were found for the treatment group. Similar effects were found for the control subjects when they later received the intervention.

Background: Monitoring population trends including mortality within subgroups such as people with intellectual and developmental disabilities and between countries provides crucial information about the population's health and insights into underlying health concerns and the need for and effectiveness of public health efforts., Methods: Data from both US state intellectual and developmental disabilities service system administrative data sets and de-identified state Medicaid claims were used to calculate average age at death and crude mortality rates., Results: Average age at death for people in state intellectual and developmental disabilities systems was 50.4-58.7 years and 61.2-63.0 years in Medicaid data, with a crude adult mortality rate of 15.2 per thousand., Conclusions: Age at death remains lower and mortality rates higher for people with intellectual and developmental disabilities. Improved case finding (e.g. medical claims) could provide more complete mortality patterns for the population with intellectual and developmental disabilities to inform the range of access and receipt of supportive and health-related interventions and preventive care., (© 2015 John Wiley & Sons Ltd.)

This paper reports on a collaborative process to create an "aging prepared community" in a four county region. The process benefited from a generous grant from the John A. Hartford Foundation that supported an 18 month planning period which included input from service providers and a vast array of aging persons and their families, including particular efforts to reach underserved populations from multicultural, inner- city and rural communities. Under the umbrella of the Elder Network of the Capital Region, the process is now beginning its implementation period with foci on the following: linking health, social service and faith communities; developing accessible health education and wellness programs; creating and implementing a regional system of information and assistance; and mounting a media campaign.

The aim of this study was to identify predictors of the use of health and human services by community residing persons with dementia and their family caregivers. Telephone interviews were conducted with a sample of 608 primary caregivers of community residing persons with dementia who were randomly selected from a state-wide dementia registry. The Anderson Behavioral Model of Health Care Use was used as the analytic framework. Hierarchical ordinary least squares regression models were developed to analyze predictors of health and human services use. Predisposing, enabling, and need variables explained 40.9% of the variance in service use, 29.8% of the variance in health service use, and 38.1% of the variance in the use of human services. Enabling variables explained more variance in the use of health and human services than did need or predisposing variables. In contrast to the health services utilization literature that points to the importance of need variables, the results of this study lend support to findings in the caregiving literature that indicate that enabling variables are at least as important as need variables in predicting the use of community services by family caregivers of persons with dementia.

Background: The health status and health needs of adults with intellectual disability (ID) change with advancing age, and are often accompanied by difficulties with vision, hearing, mobility, stamina and some mental processes., Aim: The present study collected health status information on a large cohort of adults with ID aged > or = 40 years living in small group, community-based residences in two representative areas of New York State, USA., Method: Adult group home residents with ID aged between 40 and 79 years (n = 1371) were surveyed to determine their health status and patterns of morbidity., Results: Most subjects were characterized as being in good health. The frequency of cardiovascular, musculoskeletal and respiratory conditions, and sensory impairments increased with age, while neurological, endocrine and dermatological diseases did not. Psychiatric and behavioural disorders declined with increasing age, at least through 70 years of age. Although most conditions increased with age, their frequency varied by sex and level of ID. Frequencies of age-related organ system morbidity were compared to data from the National Health and Nutrition Evaluation Survey III. It was found that adults with ID had a lower overall reported frequency of cardiovascular risk factors, including hypertension and hyperlipidaemia, and adult-onset diabetes. Inconsistencies with mortality data among older adults with ID were observed (which showed equal if not greater prevalence of deaths as a result of cardiovascular disease and cancer)., Conclusion: These results suggest that either a cohort effect is operating (i.e. contemporary populations are healthier than previous populations), or that there may be under-recognition of select risk factors and diseases.

This article describes the processes and methods used to protect human subjects during a joint research project undertaken by a state health department and a university-based research team. The use of a statewide registry to obtain a sample of primary caregivers of persons with dementia provided a unique opportunity for the research team to interview a large and representative sample of caregivers. At the same time, it raised complex issues regarding the privacy of the primary caregivers and the confidentiality of the patient data that were drawn from the state-operated mandatory dementia registry. Guidelines for enabling access while ensuring the privacy and confidentiality of the study participants are presented.

A demonstration project was undertaken in the state of New York to assess how area agencies on aging (AAAs) would approach outreach and direct aid to families caring for someone with a developmental disability. It was found that AAAs organized their outreach and direct-aid efforts using three main approaches: direct operation, contract operations, and multi-organizational. They generally organized staff time so that about two days per week of effort was devoted to undertaking outreach activities, conducting community education, and providing casework and referrals for target families. Four major distinctions were identified that differentiated work with older carers of persons with a developmental disability from that with other kinds of carers: complexity of problems presented by households identified, vagaries of fiscal resources, diverse household composition, and planning for eventualities. It was concluded that targeting AAAs for outreach and providing help to these carers was effective and productive and should be replicated throughout the United States.