Principles in Practice: The Advocacy and Empowerment Project

Complete Digitized Text of Chapter 8 of the book Combating Violence & Abuse of People with Disabilities: A Call to Action by Nancy M. Fitzsimons.https://cornerstone.lib.mnsu.edu/books-fitzsimons-combating-violence/1009/thumbnail.jp

Recognizing and Responding to the Health Disparities of People with Disabilities

Health status is critically important to experiencing quality of life, self-sufficiency, and full participation in society. For the 54 million Americans with disabilities, maintaining health and wellness is especially important to reduce the impact of impairment on functioning in these critical life areas. Yet, people with disabilities may be the largest underserved subpopulation demonstrating health status disparities that stem from preventable secondary conditions. Healthy People 2010, the nation’s blueprint for improved health, addresses this problem in its objectives. In 2002 and 2005, the U.S. Surgeon General asked for public health efforts to improve the health and wellness of persons with disabilities. This article examines the concepts of health and wellness, summarizes currently available information documenting disparities in health for people with disabilities, and provides a framework for policy recommendations to reduce health disparities among people with disabilities

New England Regional Health Equity Profile & Call to Action

Good health is a foundation that allows people to participate in the most important aspects of life. The purpose of the New England Regional Health Equity Profile and Call to Action is to identify where differences in good health exist among racial, ethnic, and disability populations in New England as well as foster policy, programmatic, and individual action to combat health disparities and achieve health equity for racial, ethnic, disability and underserved populations in New England. The report was written by the members of the New England Regional Health Equity Council (RHEC), one of ten regional health equity councils formed by the Office of Minority Health at the federal Department of Health and Human Services. The mission of the New England RHEC is to achieve health equity for all through collective action in the New England region. The New England RHEC’s vision is to achieve health equity through cross-sector interaction and collaboration of activities and resources to optimize health for all where they live, learn, work, and play. The New England Regional Health Equity Profile and Call to Action uses a “social determinants of health” approach. A social determinants of health approach focuses on understanding how the intersection of the social and physical environments; individual behaviors; and access to education, income, healthy foods and health care, impacts a wide range of health and quality-of-life outcomes. The report examines the following topics: Socio-Economic Status, Healthy Eating and Physical Activity, Risky Behaviors, Cultural Competency in Health Care, Health Care Access, Health Outcomes, and the Intersection of Race/Ethnicity & Disability. It also includes a description of State Health Equity Activities and a Regional Call to Action

Healthy Lifestyles for People with Disabilities

People with disabilities are more susceptible to compromised health status and preventable secondary conditions. A Healthy Lifestyles curriculum was developed as a health promotion program for people with disabilities. Using the curriculum, ten free 2½-day workshops were provided for people with various disabilities in Oregon and Southwest Washington. Workshops were conducted in collaboration with local entities such as Centers for Independent Living. The workshops took an integrated approach to health, addressing connections among physical, social, emotional, and spiritual health, and health through meaningful activities. During workshops, the participants obtained health information and experienced healthy activities such as yoga and non-impact aerobics, both tailored for people with disabilities. At the end of the workshop, each participant identified two healthy lifestyle goals to work toward. Progress and/or barriers in accomplishing those goals were shared in support groups for 6-9 months. Preliminary results indicate early and sustained improvements in health behaviors and health-related attitudes. The Healthy Lifestyles program offers a promising approach to promoting health among people with disabilities

The dynamics of disability and chronic conditions

The purpose of this paper is to provide a background to chronic conditions and disability and introduce manuscripts that were part of a recent forum examining this issue. The paper begins with an overview of definitions of disability and chronic conditions. It then presents several reasons why disentangling chronic conditions and disability is important. Finally, it briefly describes the forum manuscripts before making a call for understanding the dynamics of chronic condition and disability to promote the health of all

Self-reported health of people with intellectual disability

Self-reported health is an important outcome in the evaluation of health care but is largely ignored in favor of proxy-based reporting for people with an intellectual disability. This study briefly reviews the role of self-report in health assessment of people with intellectual disability and the challenges and recommendations that have emerged from the considerable body of research on interviewing and self-report. Limitations in current recommendations are addressed from the perspective of the cognition of self-report. The review describes conceptual directions for the reconciliation of the two contradictory themes in the treatment of self-report: the centrality given to personal perceptions and choices and the methodological concerns over the meaningfulness and validity of the self-reporting process

Construction and validation of the Outpatient Health Care Usability Profile (OHCUP)

Background: The Americans with Disabilities Act (ADA) requires health care facilities to provide equal access to patents with disabilities. Yet, people with disabilities experience many access barriers. Objective/hypothesis: To develop a valid, reliable, and user-friendly tool that measures the physical and environmental features of outpatient health care facilities. Instead of addressing full compliance with the ADA, the tool measures the essential features of an outpatient health care facility. Methods: The project included an online survey of people with disabilities (reported elsewhere), work groups of people with disabilities prioritizing ADA administrative guidelines (ADAAG), ADA expert review, measure development, pilot testing and re-testing. ADA experts\u27 ratings were summarized as Content Validity Ratios (CVR). Retained ADAAG items were organized into a survey instrument and tested by raters at outpatient health clinics. Inter-rater reliability was assessed using Cohen\u27s Kappa coefficient and Gwet\u27s AC1 statistic. Refinement and re-testing of the instrument was conducted. Results: The work groups narrowed the ADAG items from over 400 to 154 items. CVR ratings from ADA subject-matter experts reduced the items to 129. Inter-rater reliability for the pilot version was 0.61 (Kappa) and 0.88 (AC1). After refinement, inter-rater reliability was 0.77 (Kappa) and 0.90 (AC1). The items with the lowest reliability scores were re-examined, revised, and re-tested. Inter-rater reliability for the final version of the OHCUP was 0.89 (Kappa) and 0.97 (AC1). Conclusion: The OHCUP is a valid and reliable tool for measuring the usability of health care facilities

Examining functional content in widely used Health-Related Quality of Life scales

Purpose: Assess extent to which generic Quality of Life (QOL) and Health-Related Quality of Life (HRQOL) scales include function in assessment of health, and identify health assessment items that are free of functional content. Methods: An expert panel on measurement of health and disability reached consensus on definitions of health, disability, and function. They assessed all items of all generic (non-condition-specific) scales in the 2006 ProQolid database for being important to measuring health as distinct from function. Ratings were summarized as content validity ratios. Retained items were written into standard format and reviewed again by the expert panel and a validity panel with expertise in specific disabilities. Results: Of 85 scales, 21 were retained as containing items important for assessing health. Scales ranged from 100% (BRFSS HRQOL, WHO-5) to only 4% of items rated as important. In further review of “important” items, functional content was identified in many of the items, particularly with regard to mental functioning. Conclusions: Popular generic scales of QOL and HRQOL vary greatly in the degree to which they include content on function. A pool of items can be identified that are relatively free of function. Distinguishing measurement of function and health is particularly important for people with long-standing functional limitations and for assessing the relationship of health with function. (PsycINFO Database Record (c) 2012 APA, all rights reserved