Towards Best Practice in Provision of Health Services for People with Disabilities in Ireland
Foreword
This report is one in a series which presents research commissioned by the NDA in 2002 to provide such baseline evidence on the quantum and range of service provision. In commissioning this series, we found strong concurrence across all the policy areas that there were large data gaps. We have established where those gaps are most evident. We hope that it can assist in setting priorities for data strategies, service planning and policies for the equal treatment and inclusion of people with disabilities in Ireland.
It is clear that much of the policy work to date has been framed from the policy maker’s perspective with poor estimations of impact. It is imperative to frame policy from an individual perspective and to aggregate information from the individual to the regional/national perspective so that accurate estimates can be made regarding the potential costs and impact of proposed policy actions on the lives of people with disabilities.
I thank each of the researchers who worked on this series and supported the NDA in undertaking this important work, and the cross functional teams within NDA who had to progress the drafts towards conclusion. The priorities set out in the overview of this document are set to appear in our policy work over the next three year period under the second strategic Plan 2004-2006- “Progressing the Disability Agenda in Ireland”
I would like to acknowledge the support of the Disability Equality Unit in the Department of Justice Equality and Law Reform, without whose support this work would not be possible. I would also like to mark the encouragement of our Authority members who recognised the value of publishing despite the incomplete picture.
Angela Kerins
Chairperson
National Disability Authority
Table Of Contents
Foreword 6
Acknowledgments 7
Overview 7
Data 10
Health service mapping 10
Disability policy development and the reform programme in health 11
Service provision 12
Coordination and integration of services 12
Rights and a social model of disability 12
Quality developments and standards 13
Awareness raising, training and guidance 13
Information accessibility 14
User involvement and participation 14
Equality, equal status reviews and disability proofing 14
Conclusion 14
Introduction 15
CHAPTER I: POLICY AND LEGISLATION UNDERPINNING SERVICE PROVISION, DEVELOPMENT, PLANNING AND MONITORING 16
1.1 Introduction 16
1.2 The organisation of health services in Ireland 17
1.3 The reform programme in health 18
1.4 Key legislation 19
Mental Health Act 2001 19
National Disability Authority Act, 1999 20
Health (Eastern Regional Health Authority) Act, 1999 20
Health Amendment Act (no 3), 1996 20
Health Act, 1970 20
Health Act, 1947 20
1.5 National health policies and strategies 20
Quality and Fairness – A System for You 21
Primary Care: A New Direction, 2001 22
Acute Hospital Bed Capacity: A National Review, 2002 22
The National Health Promotion Strategy, 2000-2005 22
Reports of the Chief Medical Officer, 1999 and 2000 22
1.6 Specific Policies Impacting on Health for People with disabilities 23
A Strategy for Equality and Towards Equal Citizenship 23
Specific policy and service developments for people with disabilities 24
People with intellectual disability 24
People with physical and sensory disabilities 24
People with Mental Illness 25
Older People With Disabilities 26
Children With Disabilities 26
Women With Disabilities 27
1.7 Other government policies/legislation impacting on disability and health 27
The Strategic Management Initiative and Delivering Better Government 27
Equality Legislation 28
National Anti-Poverty Strategy, Health Working Group 28
1.8 Information and data issues 28
1.9 Assuring, monitoring and evaluating quality in health 30
1.10 Conclusion 31
Chapter 2: The range and quantum of services 32
2.1 Introduction 32
Mapping exercises in the Midland Health Board and the Eastern Regional Health Authority 32
Disability health services: recent developments 33
Data issues 33
Performance indicators for people with disabilities 35
2.2 Health mapping methodology 35
Definitions 39
2.3 National data and information 40
Budget for mental health and disability services 40
Funding for disability health services, 1997-2002 41
2.4 Mental health services 44
Data on mental health services 44
Key developments in services 44
In summary 45
Numbers in psychiatric care and receiving mental health services: data for 200111 46
Inpatients 46
Admissions 46
Community based psychiatric services: outpatients, day hospitals, day centres and community residencies 49
Outpatient clinics 49
Day hospitals 49
Percentages 55
Day centres 58
Community residencies 58
Medical staffing 58
Inspector of Mental Health Services 59
Key issues raised by the Inspector of Mental Hospitals (1998, 1999, 2000 and 2001): 61
Living conditions 61
Standards of care and rights of mental health patients 62
Funding 62
Health status 62
New services and staffing 62
2.5 Disability services: physical and sensory disability and intellectual disability 63
Services for people with intellectual disability and autism 63
Services for people with physical and sensory disabilities 69
2.6 Staffing and personnel issues 71
2.7 Rehabilitative training programmes funded by the DOHC 73
2.8 Community welfare services 74
2.9 Overview of statutory funded provision in a selection of health boards 74
a) Eastern Regional Health Authority 75
i) Mental health services 76
Examples of good practice 78
b) Midland Health Board 78
i) Mental health services 78
Recent service developments 79
Key policy, auditing and review initiatives impacting on service planning 80
Key challenges 80
Emerging issues/unmet needs 80
Voluntary Sector and Partnerships 81
ii) Disability support services 81
Key aspects of the Board’s recent activities 81
Recent developments in service 82
Gaps and challenges identified in services 84
Core services and staffing 84
Improved quality and range of services 84
Services for specific groups 84
c) Southern Health Board 85
i) Mental health services 85
Key priorities and plans: 85
ii) Services for people with physical and sensory disabilities 87
iii) Services for people with intellectual disability 87
Key priorities for 2003 include: 88
d) North Western Health Board 88
i) Mental health services 88
Recent developments: 89
ii) Services for people with physical and sensory disability 89
Recent developments in services: 89
Priority developments: 90
iii) Services for people with intellectual disabilities 90
Key developments include the provision of the following services: 90
e) South Eastern Health Board 91
i) Mental health services 91
Recent developments in services: 91
ii) Services for people with intellectual disability 92
Recent developments in services 92
Priorities for 2003 93
iii) Services for people with physical and sensory disability 93
Recent developments in services 93
Priorities for the Board for 2003 94
Examples of good practice: initiatives in mental health services and services for people with disabilities 94
2.10 Conclusions 94
CHAPTER 3: INTERNATIONAL GOOD PRACTICE IN HEALTH AND SOCIAL CARE SERVICES FOR PEOPLE WITH DISABILITIES 95
3.1 Introduction 95
Standard Rules on the Equalisation of Opportunities for Persons with Disabilities (adopted by the UN General Assembly in 1993). 98
3.2 International good practice 98
a) United Nations 98
b) World Health Organisation 100
Medical care 101
Rehabilitation 102
Support services 102
Personnel Training 102
3.3 European Good practice 102
a) European Union 102
b) Council of Europe 104
3.4 Case Study: The right to health 106
3.5 National examples of good practice 109
a) Introduction 109
b) The funding of health care 109
c) The organisation and provision of health and social care services in Europe 109
d) Equality, rights to services and legal protection against discrimination 110
Finland 112
Provision of health, social and rehabilitation services 112
Disability legislation 113
Denmark 114
Provision of health, social and rehabilitation services 114
France 114
Provision of health, social and rehabilitation services 114
Disability legislation 115
The Netherlands 115
Provision of health, social and rehabilitation services 115
Disability legislation 116
Sweden 116
Provision of health, social and rehabilitation services 116
Disability legislation 116
UK 117
Provision of health, social and rehabilitation services 117
Disability legislation 118
Australia 119
Disability legislation 119
Canada 119
Disability legislation 119
USA 120
e) The quality of health and social care provision 120
Integrating services for people with intellectual disability 123
Evidenced based service planning 123
Data and information systems 124
Mental health service mapping 124
f) The development of a social model of disability 126
Independent living 126
Assertive Outreach 127
Direct payments and personal budgets 128
Participation of service users in the planning, development and monitoring of services 129
User involvement 130
3.6 Conclusions 130
Equality and anti-discrimination approaches 131
Social model of disability 131
Good quality services 132
Chapter 4: Conclusions and key findings 133
Key findings from the health mapping research: 133
Data issues 133
Funding 133
Services 133
Data collection and management of data 134
Access to and provision of services 135
Disability Services 135
Mental health services 135
Funding 136
Towards a social model of disability 136
Feedback from service users about the future development of disability health services 137
Equality and disability proofing 138
Chapter 5: Recommendations 139
5.1 Data 140
Department of Health and Children and Health Boards 140
5.2 Health service mapping 141
Department of Health and Children 141
National Disability Authority 141
5.3 Disability policy development and the reform programme in health 142
Department of Health and Children 142
Department of Health and Children, Local Authorities and the National Disability Authority 142
Department of Health and Children, Health Boards and Department of Social and Family Affairs 142
5.4 Service provision 142
Mental Health Services 142
Department of Health and Children and statutory and non-statutory service providers 142
Local authorities and Health Boards 143
Irish College of General Practitioners 143
National Disability Authority, Mental Health Commission and mental health advocacy organisations 143
People with an intellectual disability 144
Department of Health and Children, Health Boards, statutory and non-statutory providers 144
People with a physical and sensory disability 144
Department of Health and Children, Health Boards, statutory and non-statutory providers 144
5.5 Coordination and integration of services 145
Government Departments 145
Local authorities, Health Boards and City and County Development Boards 145
5.6 Rights and the social model of disability 145
Department of Justice, Equality and Law Reform 145
Department of Health and Children, statutory and non-statutory providers 145
National Disability Authority 146
Comhairle and Advocacy Organisations 146
5.7 Quality development and standards 146
Department of Health and Children 146
Department of Health and Children and the National Disability Authority 146
5.8 Awareness raising, training and guidance 146
National Disability Authority and the Equality Authority 147
Department of Health and Children 147
National Disability Authority and the Department of the Taoiseach 147
5.9 Information accessibility 147
5.10 User involvement and participation 147
Department of Health and Children, National Disability Authority and Health Boards 148
5.11 Equality, equal status reviews and disability proofing 148
Equality Authority, National Disability Authority and Health Boards 148
Bibliography 148
Appendix 1: List of relevant legislation and policy documents relevant to disability and health 154
1. Key legislation 154
2. National health policy statements/documents 154
3. National policy documents on disability 155
Mental Health 155
Physical Disability 155
Intellectual Disability 156
4. Disability and other groups 156
Children 156
Older people 156
Women 156
5. Disability, Health and Poverty 157
6. Strategy Statements/Service Plans 157
7. Other relevant national, European and International provisions 157
International legal provisions that may impact on disability and health services 157
Appendix 2: Department of Health and Children Performance Indicators for Disability Services Intellectual 159
Effectiveness 159
Rationale 159
Source of Information 159
Frequency of Reporting 159
Specific Questions to be asked: 159
Commentary required: 159
Health Improvement 160
Rationale 160
Source of Information 160
Frequency of reporting 160
Specific Questions to be asked: 160
Appendix 3:Mental Health Services Mapping Framework 161
1. Day, residential and respite care 161
2. Home and community based supports 163
3. Mental health services for specific groups 165
Other services 167
Appendix 4: Services for People with Physical and Sensory Disabilities Mapping Framework 169
1. Therapeutic, rehabilitative and medical supports 169
1. Day, residential and respite care 171
3. Home and community based supports 173
4. Other services 175
Appendix 5: Services for People with Intellectual Disability Mapping Framework 178
1. Day, residential and respite care 178
2. Therapeutic, medical and other supports 180
3. Services to specific groups 181
4. Other services: needs assessment, advocacy, training, transport and housing 183
Appendix 6: Descriptions and Definitions of Services 185
Appendix 7: Summary Tables of Health Board Provided and Funded Services 190
MENTAL HEALTH: HEALTH BOARD FUNDED SERVICES 190
PEOPLE WITH INTELLECTUAL DISABILITY: HEALTH BOARD FUNDED SERVICES 191
PEOPLE WITH PHYSICAL AND SENSORY DISABILITIES: HEALTH BOARD FUNDED SERVICES 193
Appendix 8: UN Standard Rules 195
I. Preconditions for Equal Participation 195
II. Target Areas for Equal Participation 195
III. Implementation Measures 195
IV. Monitoring Mechanism 195
I. Preconditions for Equal Participation 195
Rule 1: Awareness-raising 195
Rule 2: Medical care 196
Rule 3: Rehabilitation 197
Rule 4: Support services 197
Appendix 9: Non Statutory Service Providers in the Disability Sector 198
A. Organisations Representing Non-Statutory Service Providers 198
B. Non-Statutory Service Providers Receiving Health Board Funding 198
Intellectual Disability 198
Physical and sensory disability 200
Mental health 201
All disabilities 201
Housing Associations 201
Acknowledgments
Many people cooperated in providing very valuable information and feedback during the preparation of this report. Directors of Disability Services in all of the health boards cooperated in providing information at an extremely busy time of the year. In particular thanks go to Breda Crehan-Roche, Director of Disability Services, David Whelan and Gerry Raleigh from the Midland Health Board for their assistance in carrying out the more detailed mapping exercise and for coordinating and contacting organisations providing disability support services in the Midland Health Board area. These thanks are also extended to Diane Nurse, Service Planner for Physical and Sensory Disabilities, ERHA; John O’Sullivan, Director of Disability Services ECAHB; Violet Hartford, SWAHB; Marion Meany NAHB, Frances Fletcher and Mary O’Reilly at the Department of Health and Children, and Fiona Mulvany and Antoinette Daly from the Health Research Board who provided valuable data for the health mapping. A large number of disability organisations also provided valuable insights and feedback, in particular I would like to thank Deidre Carroll from NAMHI, Donal Toolan, Forum of People with Disabilities, John Dolan and Joanne McCarthy, DFI, John Bosco Comana, IDS, Clodagh O’Brien, Not for Profit Business Association.