Patricia Noonan Walsh

Managing health problems in people with intellectual disabilities

#### Summary points People with intellectual disabilities have a higher prevalence of health problems than the general public, and their health needs are often unrecognised and unmet.1 People with intellectual and other disabilities are also more likely to develop secondary health conditions.w1 Improving the health of people with disabilities during their lives is a specific aim of the Healthy People 2010 initiative in the United States,2 the Valuing People initiative in the United Kingdom,w2 and the Pomona project (www.pomonaproject.org),3 a public health initiative funded by the European Union to develop and test a set of health indicators for people with disabilities. A recent randomised controlled trial on annual health screening in people with intellectual disabilities found an improvement in health in the intervention group.4 Nevertheless, epidemiological research on the health of people with intellectual disabilities is limited. We present here an up-to-date overview for medical generalists. Epidemiological research shows a prevalence of intellectual disability of about 0.7% (a figure mostly derived from service registrations—funding bodies or service providers).5 w3 In a recent conceptual review, Mont challenges the usefulness of a single summary indicator to capture disability,6 which is not a health condition borne by an individual. Rather, disability is, he says, “complex and multifaceted, with …

Ageing and health status in adults with intellectual disabilities: Results of the European POMONA II study

Abstract Background POMONA II was a European Commission public health-funded project. The research questions in this article focus on age-specific differences relating to environmental and lifestyle factors, and the 17 medical conditions measured by the POMONA Checklist of Health Indicators (P15). Method The P15 was completed in a cross-sectional design for a stratified sample of 1,253 adults with ID across 14 European member states. Results Older people (55+) were more likely to live in larger residential homes. Rates of smoking and use of alcohol were lower than in the general population but were higher with older age. More than 60% of older adults had a sedentary lifestyle. Cataract, hearing disorder, diabetes, hypertension, osteoarthritis/arthrosis, and osteoporosis were positively associated with advancing age; allergies and epilepsy, negatively associated. Conclusions Some evidence of health disparities was found for older people with ID, particularly in terms of underdiagnosed or inadequately managed preventable health conditions.

Quality and Costs of Supported Living Residences and Group Homes in the United Kingdom.

Information was collected on 63 adults in supported living residences, 55 adults in small group homes, and 152 adults in large group homes. Results indicated that (a) there were no statistically significant differences in service costs once these had been adjusted to take account of participant characteristics; (b) compared with participants living in small group homes, those in supported living residences had greater choice, participated in more community-based activities, experienced fewer scheduled activities, were more likely to have had their home vandalized, and were considered at greater risk of exploitation; (c) compared with participants living in large group homes, those in small group homes had larger social networks, more people in their social networks who were not staff, not family, and did not have mental retardation. These residents were considered at less risk of abuse.

Quality and costs of community-based residential supports, village communities, and residential campuses in the United Kingdom

The costs, nature, and benefits of residential supports were examined for 86 adults with mental retardation living in village communities, 133 adults living in newly built residential campuses, and 281 adults living in dispersed housing schemes (small community-based group homes and supported living). Results indicated that (a) the adjusted comprehensive costs of provision in dispersed housing schemes were 15% higher than in residential campuses and 20% higher than in village communities; (b) dispersed housing schemes and village communities offered a significantly greater quality of care than did residential campuses; and (c) there appeared to be distinct patterns of quality of life benefits associated with dispersed housing schemes and village communities, with both approaches offering a greater quality of life than did residential campuses.

Health of Women with Intellectual Disabilities

Introduction Section One- Health Status and Trends Reproductive and Physical Health in Women with Intellectual Disabilities Women Aging with Intellectual Disabilities: What are the Health Risks? Womens Mental Health Section Two- Social Context of Health Womens Health: Social and Economic Contexts A Historical Approach to the Rights of Women with Intellectual Disabilities Unholy Trinity: Women, Parenting and Intellectual Disabilities Social Roles and Informal Supports for Women with Intellectual Disabilities Section Three- Promoting Health Health and Aging Issues for Women with Intellectual Disabilities in their own Voices Sexuality of Women with Intellectual Disabilities Risk and Vulnerability: Dilemmas for Women with Intellectual Disabilities Health Education for Women with Intellectual Disabilities Building Supports for Women with Intellectual Disabilities Across the Lifespan Nursing Perspective with Practical Considerations Mens Health: The Female of the Species is more Healthy than the Male.

Environmental opportunities and supports for exercising self-determination in community-based residential settings.

Information was collected on the environmental opportunities for exercising self-determination among 281 adults with mental retardation receiving community-based residential supports. The results indicated that: (1) the majority of participants had little or no opportunity to exercise self-determination over major life decisions (e.g., with whom and where to live, the recruitment and retention of care staff); (2) even in more mundane areas, such as where and when to eat, the majority of participants were not supported to exercise effective control; (3) variation in environmental opportunities to exercise self-determination was strongly related to a range of factors including participant ability, previous residential history, and structural and procedural aspects of the residential supports currently provided.

The adaptive behavior scale-residential and community (part I): towards the development of a short form

A potential 24-item short form (SABS) of the 73-item Adaptive Behavior Scale-Residential and Community (Part I) (ABS-RC2; Nihira et al., 1993a, b) was developed, based on data from two diverse UK samples of adults with intellectual disabilities living in residential services (n = 560 and 254). SABS factor and total scores showed good internal reliability in both samples (alpha 0.89-0.98), and were highly correlated with their full ABS-RC2 Part I equivalents (r = 0.97-0.99). Regression equations were calculated for SABS factor and total scores against their full ABS-RC2 Part I equivalents. Levels of agreement between predicted quartile scores (derived from the regression equations) and actual full ABS-RC2 Part I quartile scores were high (kappa 0.75-0.89; percentage agreement 82%-92%). It is concluded that the SABS is a potentially useful research tool, although further work is clearly needed to establish the reliability and cross-cultural validity of the instrument.

Examining the prevalence of epilepsy and delivery of epilepsy care in Ireland

Purpose:  To examine the prevalence of epilepsy and delivery of epilepsy care in Ireland.

The P15 - a multinational assessment battery for collecting data on health indicators relevant to adults with intellectual disabilities.

BACKGROUND Health disparities between adults with intellectual disabilities (ID) and the general population have been well documented but, to date, no dedicated assessment battery for measuring health disparity has been available. This paper reports on the development and testing of a multinational assessment battery for collecting data on a range of health indicators relevant to adults with ID. METHODS An assessment battery (the P15) was developed following piloting, and administered to samples of adults with ID, in 14 EU countries. Samples were neither random, nor representative of the countries from which they were drawn. However, within the local health administration areas selected in each country, efforts were made to ensure samples were broadly representative of the typical living circumstances, ages and ability levels of the administrative population of adults with ID. The total sample comprised 1269 adults with ID, of whom 49% were female. The mean age was 41 years (range 19 to 90). RESULTS Overall, feasibility, internal consistency and face validity of the P15 was acceptable. CONCLUSIONS With some refinement the P15 could be useful for collecting data on health indicators known to be particularly important for adults with ID. It is useable in a range of countries and has the potential to highlight health inequity for adults with ID at a national or local level. Larger scale epidemiological studies are needed to exploit the potential of the P15 to address health inequity in this group.

Health indicators and intellectual disability.

Purpose of review Health disparities are evident between people with intellectual disabilities and the general population. Despite the potential of indicators for measuring disparities and planning interventions to address inequalities– currently a priority health policy target– few studies have mapped the physical or mental health of people with intellectual disabilities onto the growing territory of health disparities, health information systems and health indicators. This review summarizes recent publications about the role of indicators in gathering optimal health information on behalf of this segment of the population. Recent findings Studies related to measures of the health of people with intellectual disabilities are presented in three sections: information captured in general population surveys; measures of health status of people with intellectual disabilities at country and regional levels; and their use of healthcare systems. The work of the Pomona group of European partners who have devised and applied a set of health indicators specifically for people with intellectual disabilities is presented. Summary Health indicators yield data to identify health conditions, plan interventions and compare populations or segments of the population. It is suggested that better definitions, measures and surveillance will yield comparable information to inform public health policy and clinical practice.