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Acknowledgements

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Acknowledgements

    The Experience of People with Disabilities in Accessing

    Health Services in Ireland: Do inequalities exist?

    Report to the National Disability Authority

Maureen D’Eath, Jane Sixsmith, Roseanne Cannon and Louise Kelly

    Centre for Health Promotion Studies

    Department of Health Promotion

    National University of Ireland, Galway

    May 2005

Acknowledgements

    The authors of this report gratefully acknowledge the support and assistance of all those who participated in the study, specifically all who gave their time to be interviewed. We acknowledge the contribution of Dr. E. Stevens with data collections and Larri Walker and Christina Costello with report production. The support of Norbert MacGilla tSamhais is also acknowledged.

In particular we wish to thank the following:

Brainwave Irish Epilepsy Association

    Bridges

    Centre for Independent Living

    Disability Law and Policy Research Unit

    Headway Ireland

    Irish Lupus Support Group

    Irish M.E. Support Group

    Irish Wheelchair Association

    Mental Health Ireland

    Multiple Sclerosis Society

    National Association for Deaf People

    National Council for the Blind of Ireland

    People with Disabilities in Ireland

    Rehab Care

Terminology

    References made to deaf people and those hard of hearing were phrased following consultation with the National Association of Deaf People.

CONTENT

    EXECUTIVE SUMMARY ........................................................................ 1 1. LITERATURE REVIEW.........................................................11 1.1. HEALTH INEQUALITIES .............................................................................. 11

    1.2. EQUITY......................................................................................................... 13

    1.3. ACCESS ....................................................................................................... 13

    1.4. DISABILITY ................................................................................................... 14

    1.5. MODELS OF DISABILITY ............................................................................ 15

    1.6. INTERNATIONAL LEGISLATION ................................................................. 17

    1.7. EUROPEAN LEGISLATION ......................................................................... 19

    1.8. EQUALITY, EQUITY AND ACCESS FOR PEOPLE WITH DISABILITIES.. 28 1.9. PRIMARY SERVICE PROVISION ................................................................ 32

    1.10. HEALTH EDUCATION AND HEALTH PROMOTION .............................. 33

    1.11. HEALTH INFORMATION .......................................................................... 34

    1.12. HEALTH SCREENING .............................................................................. 35

    1.13. GENERAL PRACTITIONERS ................................................................... 38

    1.14. DENTAL SERVICES ................................................................................ 41

    1.15. REPRODUCTIVE HEALTH AND FAMILY PLANNING ............................ 43 1.16. SECONDARY SERVICE PROVISION ..................................................... 45

    1.17. ACCIDENT AND EMERGENCY DEPARTMENTS ................................... 46

    1.18. OUTPATIENTS ......................................................................................... 47

    1.19. MENTAL HEALTH SERVICES .................................................................. 47

    1.20. TERTIARY SERVICE PROVISION .......................................................... 49

    2. BACKGROUND, STUDY DESIGN & PARTICIPANT

    PROFILE ................................................................................................54 3. INTERVIEWS .............................................................................63 3.2. SPECIFIC SERVICES ON THE CONTINUUM OF HEALTH SERVICES .... 63

    3.2.1. Primary Health Care ............................................................................. 63

    3.2.2. Accident and Emergency Department .................................................... 72

    3.2.3. Secondary Health Services .................................................................... 75

    3.2.4. In-patients ............................................................................................. 79

    3.2.5. Mental Health Services.......................................................................... 83 3.3. EMERGING THEMES ACROSS SERVICES .............................................. 84

    3.3.1. Participants’ Perceptions of Equality .................................................... 85

    3.3.2. Layers of Inequality ............................................................................... 86

    3.3.3. Fragmentation of Services ..................................................................... 88

    3.3.4. Adaptation and ‘fit’ ............................................................................... 89

    4. DISCUSSION ..............................................................................91 4.1. INTRODUCTION ........................................................................................... 91

    4.2. OVERARCHING ISSUES ............................................................................. 92

    4.2.1. The Nature of Inequality ........................................................................ 92

    4.2.2. Nature of Service Provision ................................................................... 95

    4.2.3. Information Provision ........................................................................... 96 4.3. ACCESS ....................................................................................................... 98

    4.3.1. Accessibility: Physical Barriers Relative to Location ............................. 98

    4.3.2. Accommodation: Sensitivity to Individual Differences and Functioning

     100

    4.3.3. Affordability: Financial, Time or Energy costs .................................... 102

    4.3.4. Availability: The Type and Extent of Services ...................................... 102 5. CONCLUSIONS .............................................................................. 105 REFERENCES ....................................................................................... 111

    Executive Summary

    Research aims

    The overall aim of this study was to capture the experience of people with disabilities in Ireland in accessing mainstream health services, placing this experience within the context of an international literature review on the subject and making the results available to relevant parties to help them draw up recommendations in terms of practice, policy or further research. The findings are of particular relevance for people with disabilities, advocates, health professionals, professional associations, the National Disability Authority (NDA) and government departments.

    A number of reports have documented baseline information on health service provision for people with disabilities and identified gaps including research by the NDA e.g. Towards Best Practice in Provision of Health Services (2003) and Review of Access to Mental Health Services for People with Intellectual Disabilities (2003). However, there is a lack of data on the lived experiences of people with disabilities. By researching the experiences of people with disabilities in accessing and using mainstream health services we can better address any gaps in the health system and identify areas in which there may be opportunities for more effective, efficient and equitable care delivery. The health service users perspective is essential in a process of health service reform that consciously promotes equality, inclusion and person-centeredness. Thus, this research has an appropriate contribution to make to the ongoing reform, development and re-orientation of Irish health services.

    Methodology

    The study design was in two parts: firstly, a comprehensive international literature review on access and use of mainstream health services and secondly, individual interviews with adults with a disability on their experience of mainstream health services. Individual interviews were chosen as the most

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    appropriate method of data collection to capture service users experiences and to provide a person-focused approach (Priestley, 2000) and a framework within which respondents could express their understanding and experience in their own terms (Patton, 2002). Thirty-two interviews were carried out of which 27 were directly with people with a range of disabilities (15 men, 12 women; age range, 21 to 77 years, including persons with intellectual, physical and sensory disabilities, people who have suffered brain injury and people with physical who experience mental health difficulty). In addition to people with disabilities the mothers of two men with brain injury were interviewed, as were three advocates of people with moderate to profound levels of intellectual disability. Some of the participants had experienced their disability from birth while others had acquired a disability. Several persons experienced dual or multiple disabilities. Two thirds of the participants reported living in an urban area and more than half reported themselves to be employed although only four participants were in full time open employment with the others working in either part time (2) or in sheltered or supported employment or on training schemes. The majority of those interviewed had a medical card and a few had private health insurance while three persons had neither. The interviewees were identified through voluntary agencies that liased between the interviewee and research team to facilitate communication. All participants reside within one health board area although many had previously and some continued to access health services from other health board areas.

DISCUSSION

    Preamble

    In the main report, the findings section contains the results of the interviews while the discussion section in both the main report and, here, in the executive summary is based on the combined findings of the international literature review and the interviews. While the interviews were carried out only with people living in one part of the country, the findings support and echo closely the international literature, which lends support to the transferability of the findings. It can be

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    reasonably assumed that the experience of mainstream health services in one health service area in Ireland reflects, to a considerable extent, the situation in other parts of Ireland, given the central organisation and control of services. At the same time, there are some regional variations and, one might consider it both prudent and worthwhile to repeat this qualitative study on a countrywide basis and, also, to consider undertaking more in-depth qualitative work with particular sub-groups of people with disabilities, to corroborate and explore further the findings.

    In the main report the discussion is divided into two parts: overarching issues (the nature of inequality, the nature of service provision and information provision) and access (accessibility, accommodation, affordability and availability). Here, in the executive summary the discussion is outlined under eight headings: health service inequalities; inequality of access to health services; health services that are fragmented and un-coordinated; preventative and screening services; specific groups are particularly disadvantaged; financial barriers to accessing services; health services and independent living; communication, attitudinal and physical barriers; and health service development.

    Health Service Inequalities

    The fieldwork findings report positive experiences with the health services. The value of acceptance and reciprocity is demonstrated in the participants‟ experience of General Practitioners. Those actively sought out exemplified partnership approaches and inclusive practices. Unfortunately, this was not experienced across all areas of health service provision. The inequalities reported in the interviews are similar to the findings of the literature review and include inequalities in general medical services, dental medicine, mental health and preventive health programmes. Our research findings gave instances of inadequate public provision of certain services including speech therapy and physiotherapy. In some instances, while the availability of particular health services is at a sub-optimal level for everyone, the consequences of the

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    deficiency are greater for people with a disability where they are contending with additional disadvantage and, also, when the services are vital to their optimal functioning and participation in society.

    Inequality of access to Health Services

    For many people with disabilities interviewed in this study the degree of fit between themselves and the health service is a poor one. To compensate for the poor fit a range of adaptations is brought into play. In this research it was found that the system is generally rendered accessible only with considerable support from friends and relatives and from the informal goodwill of individual health workers who try to personally compensate for the deficiencies, inefficiencies and injustices of the system. “Society” acts as a buffer to compensate for a health service that is too rigid to be person-centred. Iacono et al (2004) describes this reality as an “adapter” mechanism that disguises the underlying inadequacies

    and inequalities of the system. The inequalities experienced by those interviewed would be far greater if the „adapters‟ were not compensating for and concealing them. The limitations of this „propping up‟ of health service provision are best evidenced by its inability to compensate for or to conceal the inaccessibility of preventative and screening services for many people with disabilities.

    Health Services that are fragmented and un-coordinated

    From the interviews in this study it would appear that the Irish health services are un-coordinated and too fragmented to support a person-centred approach. Fragmented services are insensitive to individual differences and needs and compromise the quality of service provision for everyone who seeks to access it. They impact inordinately on people with disabilities whose multiple service needs can be complex and who are often contending with educational, social and economic disadvantage. Fragmented services also place increased demands on their physical support capacities in a way not experienced by people without

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