Beth Marks

Health characteristics and behaviors of adults with mental retardation residing in three living arrangements

Three hundred and twenty-nine subjects (aged 17-70 years) residing in an institution (N = 184), group home (N = 39), or with one or more family members (N = 106) were evaluated on body composition, blood lipids, and health behaviors. Subjects in the institutional group had lower body weights than those in the group home and natural family settings (p < .001) and also had lower BMIs and percent body fat levels compared to those in the natural family (p < .001). The institutional group also had lower total cholesterol and LDL-C levels than the group home and natural family groups (p < .001) and lower TG and ratio of total cholesterol to HDL-C than the natural family group (p < .01). Although overall use was quite limited, residents in the group home setting smoked more cigarettes, drank more alcohol and coffee, and exercised less than those in the institution and natural family (p < .001). Group home residents also exercised less. Health promotion and disease prevention initiatives for persons with mental retardation living in group homes, in supported living placements, and with their natural families should be undertaken and carefully evaluated.

The State of the Science of Health and Wellness for Adults With Intellectual and Developmental Disabilities

Historically, people with intellectual and developmental disabilities (IDD) have experienced health disparities related to several factors including: a lack of access to high quality medical care, inadequate preparation of health care providers to meet their needs, the social determinants of health (e.g., poverty, race and gender), and the failure to include people with IDD in public health efforts and other prevention activities. Over the past decade, a greater effort has been made to both identify and begin to address myriad health disparities experienced by people with IDD through a variety of activities including programs that address health lifestyles and greater attention to the training of health care providers. Gaps in the literature include the lack of intervention trials, replications of successful approaches, and data that allow for better comparisons between people with IDD and without IDD living in the same communities. Implications for future research needed to reduce health disparities for people with IDD include: better monitoring and treatment for chronic conditions common in the general population that are also experienced by people with IDD, an enhanced understanding of how to promote health among those in the IDD population who are aging, addressing the health needs of people with IDD who are not part of the disability service system, developing a better understanding of how to include people with IDD in health and wellness programs, and improving methods for addressing the health care needs of members of this group in an efficient and cost-effective manner, either through better access to general medical care or specialized programs.

Promoting sexuality across the life span for individuals with intellectual and developmental disabilities

Sexuality is a human right that is important to all individuals regardless of age, gender, orientation, or developmental level. Sexuality is closely related to a persons self-concept and self-esteem. Individuals with I/DD have a right to sexuality and sexual expression. Nevertheless, persons with I/DD have historically been denied this right, and many structural and attitudinal barriers exist to their healthy sexuality. Paradigms in sexuality education have shifted toward recognizing sexuality as a human right, a major life resource, and an integral part of ones makeup. To broadly address the development of healthy sexuality for individuals with I/DD, the issue needs to be normalized, not ignored or avoided; which means involving parents, staff, and professionals. Working with parents to overcome parental overprotection and social isolation is critical. Parents can provide opportunities for their sons and daughters to network and form meaningful personal relationships, with peers including encouraging association with peers outside of school or work hours.

Bridging the equity gap: health promotion for adults with intellectual and developmental disabilities

Health is influenced by political, economic, social, cultural, environmental, behavioral and biological conditions--either positively or negatively. Health promotion aims to make these factors more favorable through health advocacy. Advocating for physical, mental, and social health requires that individuals with I/DD have opportunities to identify and realize their aspirations, develop the capacity to satisfy their needs, and possess the ability to adapt and/or cope with the environment. Because health is both an individual and a social responsibility, effective health promotion strategies must incorporate linkages between health and development, particularly for vulnerable and disadvantaged groups where deprivation in health and economic resources exist simultaneously and reinforce each other [6]. Incorporating health and development at the core of health promotion activities addresses issues of poverty, poor health, and unemployment, while accounting for social, cultural and economic differences. Health promotion enables people with I/DD to achieve their health goals by ensuring equal opportunities and resources. This includes having supportive environments, access to information, and life skills and opportunities to make healthy choices. People cannot achieve their health goals unless they can control health determinants. Health promotion efforts require coordinated action from all interested groups (e.g., government entities, health and other social and economic sectors, nongovernmental and voluntary organizations, local authorities, industry and media), including individuals, families and communities. Community-based health promotion emphasizes community participation, along with empowerment of community members to address inequities and increase control over their health [3]. Individual satisfaction and participation are critical components in community coalitions that are providing health promotion programs. Moreover, community leadership, shared decision-making, linkages with other organizations, and organizational climate can predict satisfaction, participation, and planning. Health becomes a resource for everyday life when individuals with I/DD are empowered and can participate in health promotion activities that are based in their community.

Interventions to promote health: Crossing networks of intellectual and developmental disabilities and aging

BACKGROUND People with intellectual and developmental disabilities experience lower levels of healthy behaviors as do older persons, making health promotion a key priority for these populations. OBJECTIVE The aim of this paper is to review the two fields of developmental disability and aging health promotion research in order to understand strategies used by both and to identify emerging and innovative practices that disability researchers can learn from each other. METHODS We conducted scoping reviews of health promotion intervention peer reviewed articles in English from 1991 to 2011 for intellectual and developmental disabilities and from 2007 to 2011 for the more extensive gerontological literature. Two reviewers extracted data. RESULTS The disability review identified 34 studies and three main types of interventions: exercise, multi-component, and health screens. The aging review identified 176 articles which had a wider variety of intervention topics and techniques, with more articles including innovative approaches to bringing interventions to community settings across a wider variety of populations. CONCLUSIONS As people with intellectual and developmental disabilities are living longer, disability health promotion can look to the aging literature for ideas to incorporate in future interventions for people with intellectual and developmental disabilities, while the gerontological research can learn from the research in intellectual and developmental disabilities on ways to adapt health promotion interventions to people with cognitive and physical limitations. Use of universal design principles could enable greater inclusion of people with disabilities in health promotion interventions for the general aging population.

Health Behavior in Adolescents

Adolescents appear to be among the healthiest group of Americans by traditional measures, such as mortality rates (OTA, 1991a). Unfortunately, despite their apparent good health status, adolescents are the only age group in the United States that has not experienced an improvement in health status over the past 30 years (Blum, 1987). Estimates show that 1 in 5 adolescents aged 10–18 suffers from at least one serious health problem (OTA, 1991a). The leading causes of death among adolescents differ from those of other age groups in that unlike older and younger Americans, adolescents are more likely to die of unintentional injuries, suicide, and homicide. Consequently, the use of traditional measures of health may not be an adequate reflection of adolescent health.

Promoting Collaboration Between Hospice and Palliative Care Providers and Adult Day Services for Individuals With Intellectual and Developmental Disabilities

While end-of-life issues are increasingly gaining more attention, people with intellectual and developmental disabilities (IDD) continue to receive significantly less consideration in research, education, and clinical practice compared with the general population. This is a growing concern especially since the sheer number of persons aging with IDD is expected to double in the next 17 years. Furthermore, policies are shifting to reflect a preference for home and community-based services as an alternative to institutionalization, and it becomes evident that adult day services (ADS) may be ideal settings for receipt of end-of-life care, especially among individuals with IDD. However, end-of-life care and advance planning most commonly occur in long-term care settings for the general population and have historically been less of a priority in ADS and residential services for people with IDD. This article discusses the attitudes of, and collaboration between, ADS and end-of-life providers for aging adults including persons with IDD and explores how ADS may be a great pathway for delivering end-of-life care to the IDD population. Implications and recommendations will also be examined.

Nursing care resources for individuals with intellectual and developmental disabilities across the life span

This article provides resources that can be used by nurses working with individuals with intellectual and developmental disabilities (I/DD) across the life span and in a variety of settings. Resources include books, articles, videos, disability-related organizations, professional organizations, and agencies providing disability-related services. Additionally, resources are provided on a range of topics, including advocacy, issues across the lifespan for individuals with I/DD, health promotion, and legislation.

Technical Standards for Nursing Education Programs in the 21st Century

Purpose: The Institute of Medicine (2000, 2002) exposed serious safety problems in the health system and called for total qualitative system change. The Institute of Medicine (2011, 2015) also calls for improving the education of nurses to provide leadership for a redesigned health system. Intertwined with improving education is the need to recruit and retain diverse highly qualified students. Disability is part of diversity inclusion, but current technical standards (nonacademic requirements) for admission to many nursing programs are a barrier to the entry of persons with disabilities. Rehabilitation nurse leaders are in a unique position to improve disability diversity in nursing. The purpose of this paper is to discuss the importance of disability diversity in nursing. Design: The history of existing technical standards used in many nursing programs is reviewed along with examples. Methods: On the basis of the concept that disability inclusion is a part of diversity inclusion, we propose a new model of technical standards for nursing education. Conclusion and Clinical Relevance: Rehabilitation nurse leaders can lead in eliminating barriers to persons with disabilities entering nursing.

Intellectual and developmental disabilities

FACT SHEET Intellectual and Developmental Disabilities National Institutes of Health Updated October 2010 1  Intellectual disability refers to a group of disorders characterized by a limited mental capacity and difficulty with adaptive behaviors such as managing money, schedules and routines, or social interactions. Intellectual disability originates before the age of 18 and may result from physical causes, such as autism or cerebral palsy, or from nonphysical causes, such as lack of stimulation and adult responsiveness.  Developmental disability is a severe, long term disability that can affect cognitive ability, physical functioning, or both. These disabilities appear before age 22 and are likely to be life-long. The term “developmental disability” encompasses intellectual disability but also includes physical disabilities. Some developmental disabilities may be solely physical, such as blindness from birth. Others involve both physical and intellectual disabilities stemming from genetic or other causes, such as Down syndrome and fetal alcohol syndrome.