A HUMAN RIGHTS APPROACH TO THE SOCIAL CARE

A HUMAN RIGHTS APPROACH TO THE SOCIAL CARE OF PEOPLE WITH A DISABILITY: DEVELOPING A STRATEGY FOR PEOPLE WITH A DISABILITY Paul Martin Northern Ireland Health and Social Care United Kingdom

A BRIEF HISTORY (1600 -2011) CHURCHES AND CHARITIES INSTITUTIONAL CARE STIGMA AND EXCLUSION THE WELFARE STATE POOR CO-ORDINATION DRIVERS FOR CHANGE OBSTACLES TO PROGRESS

WHAT IS A DISABILITY AND HUMAN RIGHTS APPROACH TO HEALTH AND SOCIAL CARE?

‘DISABILITY’ • INDIVIDUAL PEOPLE MAY HAVE IMPAIRMENTS OF VARIOUS KINDS, BUT IT IS IN INTERACTION WITH SOCIETY THAT THEY BECOME ‘DISABLED’. • “DISABILITY IS A SOCIAL CONDITION, NOT A MEDICAL CONDITION. ” • RECOGNISE AND RESPOND TO A PERSON’S INTEGRAL HUMANITY, NOT THEIR HEALTH CONDITION.

A HUMAN RIGHTS BASED APPROACH A HUMAN RIGHTS-BASED APPROACH TO HEALTH AND SOCIAL CARE DRAWS ON THE PRINCIPLES OF HUMAN RIGHTS TO GUIDE POLICY, PRACTICE AND THE DESIGN AND DELIVERY OF SERVICES.

HUMAN RIGHTS BASED APPROACH A DISABILITY AND HUMAN RIGHTS-BASED APPROACH TO HEALTH AND SOCIAL EMPHASISES: • THE RIGHT OF PEOPLE WITH DISABILITIES TO ENJOY THE HIGHEST ATTAINABLE STANDARD OF HEALTH AND SOCIAL CARE WITHOUT DISCRIMINATION; AND • COMPLIANCE WITH THE HUMAN RIGHTS ACT 1998

HUMAN RIGHTS • HUMAN RIGHTS ACT • DISABILITY DISCRIMINATION ACT • UN CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES

UN CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES AN INTERNATIONAL AGREEMENT WHICH CONFIRMS THAT PEOPLE WITH DISABILITIES HAVE THE SAME HUMAN RIGHTS AS NONDISABLED PEOPLE. IT PROTECTS THE RIGHTS OF PEOPLE WITH DISABILITIES IN ALL AREAS OF LIFE INCLUDING HEALTH AND SOCIAL CARE, INDEPENDENT LIVING, PERSONAL MOBILITY AND ACCESS TO JUSTICE.

PRINCIPLES OF A HUMAN RIGHTS BASED APPROACH DIGNITY INDEPENDENCE FREEDOM TO MAKE CHOICES NON-DISCRIMINATION PARTICIPATION AND INCLUSION ACCEPTANCE BY OTHER PEOPLE EQUALITY OF OPPORTUNITY ACCESS

WHY A HUMAN RIGHTS BASED APPROACH? A HUMAN RIGHTS-BASED APPROACH PROVIDES A FRAMEWORK OF CORE VALUES AND PRINCIPLES UPON WHICH SERVICES CAN BE BASED. THIS FRAMEWORK SUPPORTS HEALTH AND SOCIAL CARE STAFF IN MEETING THEIR PROFESSIONAL ETHICAL OBLIGATIONS.

WHY A HUMAN RIGHTS BASED APPROACH? RESPECTING AND PROMOTING HUMAN RIGHTS IMPROVES BOTH THE QUALITY AND EFFECTIVENESS OF HEALTH AND SOCIAL CARE, IMPROVES DECISION-MAKING PROCESSES AND ENHANCES THE HEALTH AND WELL-BEING OF ALL SERVICE USERS.

WHY A HUMAN RIGHTS BASED APPROACH? A RIGHTS-BASED APPROACH SENDS A MESSAGE TO SOCIETY THAT PEOPLE WITH DISABILITIES ARE FIRST AND FOREMOST EQUAL PERSONS WITH HUMAN RIGHTS. A RIGHTS-BASED APPROACH LEADS TO MORE MEANINGFUL PARTICIPATION AND ENGAGEMENT OF WITH DISABILITIES IN THE DESIGN AND DELIVERY OF HEALTH AND SOCIAL CARE SERVICES.

HOW TO IMPLEMENT A HUMAN RIGHTS BASED APPROACH? TRAIN STAFF SHARE LEARNING AND LESSONS ON GOOD PRACTICE ENSURE POLICIES IMPACT ON PRACTICE SEEK OUTSIDE ADVICE/EXPERTISE AS APPROPRIATE ALLOCATE KEY RESPONSIBILITIES

IN 2006 THE DISABILITY RIGHTS COMMISSION STATED: “…in England Wales, people with learning disabilities and people with mental health problems are much more likely than other citizens to have significant health risks and major health problems. For people with learning disabilities, these particularly include obesity and respiratory disease…” …. They went on to say……. . “In primary care, these high risk groups are actually less likely to receive some of the expected, evidence-based checks and treatments than other patients and efforts to target their needs specifically are ad hoc. ” Equal Treatment: Closing the Gap, Disability Rights Commission, 2006

SETTING THE SCENE • INCREASED RISK OF EARLY DEATH. 58 TIMES MORE LIKELY TO DIE BEFORE AGE OF 50 YEARS (MANY OF THESE DEATHS ARE AVOIDABLE) • RESPIRATORY DISEASE LEADING CAUSE OF DEATH. 3 TIMES HIGHER THAN GENERAL POPULATION • HIGHER RATE OF GASTROINTESTINAL CANCER (45% V 25%) • CHILDREN REPORTED TO HAVE ONLY FAIR/POOR HEALTH IS 2. 5/4. 5 TIMES GREATER THAN NON DISABLED PEERS • PEOPLE WITH LD WHO HAVE DIABETES HAVE FEWER MEASUREMENTS OF BMI THAN NON DISABLED • THOSE WITH STROKE HAVE FEWER BP CHECKS

SETTING THE SCENE • PREVALENCE OF EPILEPSY IS 20 TIMES HIGHER • LESS LIKELY TO ACCESS NATIONAL SCREENING PROGRAMMES – CERVICAL SCREENING 3 -17% V 85% – BREAST SCREENING 17 -52% V 76% – ROUTINE DENTAL CARE AND ASSESSMENT FOR VISION/HEARING IMPAIRMENTS • 40% OF PEOPLE HAVE ADDITIONAL MENTAL HEALTH NEEDS - PREVALENCE RATES FOR SCHIZOPHRENIA 3% V 1% - PREVALENCE RATES FOR DEMENTIA 21. 6% V 5. 7%

BARRIERS TO ACCESS ADMINISTRATIVE PROCEDURES DIAGNOSTIC OVERSHADOWING LIMITED COLLABORATION ATTITUDES, ASSUMPTIONS AND NEGATIVE PREDICTIONS • LIMITED UNDERSTANDING AROUND CAPACITY, CONSENT AND BEST INTERESTS • •

SETTING THE SCENE • PEOPLE WITH A LEARNING DISABILITY ARE LESS LIKELY TO BE GIVEN PAIN RELIEF AND LESS LIKELY TO RECEIVE PALLIATIVE CARE • CONSIDER THE NEEDS OF THOSE WITH MILD LD, SEVERE LD AND DEMOGRAPHICS (THOSE WITH COMPLEX NEEDS AND OLDER PEOPLE)

DEVELOPING THE STRATEGY FOR PEOPLE WITH A PHYSICAL AND SENSORY DISABILITY NORTHERN IRELAND 2011 -2015

VISION FOR THE STRATEGY • Promote health, wellbeing and maximise potential of individuals; • Encourage family and person-centred services and the promotion of independent living options; • Support people to become well informed and expert in their own needs; • Services are tailored to meet the changing needs of people over the course of their lifetime; and • Continue to promote and enable balanced risk taking.

OBJECTIVES • Support disabled people to better exercise their rights, choices and life opportunities; • Support the continuing development of an inclusive and effective range of high quality health and social care services; • Develop a more integrated approach to the planning and management of services within and across government departments, the HSC and the independent community and voluntary sector;

VALUES Dignity and respect for individual differences; Social inclusion and acceptance of the individual by society; Independence and life opportunities; Informed choices; Anti-discrimination in service provision; and Equality of opportunity and access to services and facilities.

KEY POLICY PRINCIPLES Equity Prevention / Early Intervention Partnership with the Third Sector Balanced Risk - Effective Assessment and Management Self Directed Support Social Inclusion User / Carer Participation

DEFINITION ‘Someone with a physical or mental impairment, which has a substantial and long term adverse effect on their ability to carry out normal day-today activities’

SCOPE ü A person-centred planning and lifecycle approach ü Partnership ü The promotion of health and wellbeing ü Enhancing access to a range of community, technological and advocacy services, including for example:

• • • Adaptations; Advocacy - Self, Peer and Independent; Assistive Technologies; Care in the Community; Direct Payments; Domiciliary Care; Equipment – Prosthetics and Wheelchairs; Individual Personalised Budgets; Habilitation / Rehabilitation; Respite / Short Break Care; and Transition Planning;

ü Skilled Workforce ü Appropriate commissioning and service provision to promote efficient and effective care; and ü implementation

PREVALENCE IN NORTHERN IRELAND • 18% of all people living in private households in NI have some degree of disability. When broken down this means that 21% of adults and 6% of children have a disability; • 37% of NI households include at least one person with a disability; 20% of these contain more than one person with a disability; • There is a higher prevalence of disability among adult females with 23% of females indicating that they had some degree of disability compared with 19% of adult males;

EXPENDITURE • £ 13. 221 m - hospital expenditure (including inpatient, out-patient and day cases); • £ 61. 245 m - personal social services (including social work services, residential and nursing homes, domiciliary care and day care services); • £ 23. 601 m - community health services (including occupational therapy, speech and language therapy, physiotherapy, community medical and dental services, nursing care and services for technology dependent children).

PROMOTING POSITIVE HEALTH WELLBEING AND EARLY INTERVENTION • Supporting individual lifestyle choices; • Primary, Secondary and Tertiary Action • Reducing the Effects of the Wider Social Determinants • Promoting Mental Health and Wellbeing • Balanced Risk Taking • Promoting Good Hearing Health • Prevention

PROMOTING POSITIVE HEALTH WELLBEING AND EARLY INTERVENTION Early intervention Promoting Good Visual Health Early Intervention for Children with Communication Disabilities

PROVIDING BETTER SERVICES TO SUPPORT INDEPENDENT LIVES Personalisation: - Choice and Control; - Family / Person-Centred Planning; - Self-Directed Support; and - Long Term Conditions; Information, Advice and Advocacy; Provision of a Skilled Workforce; Equipment;

PROVIDING BETTER SERVICES TO SUPPORT INDEPENDENT LIVES Rehabilitation; Short Breaks / Respite; Service Re-Design; Transition Support / Planning; Day Opportunities, including: - Inclusive lifestyle support; - Vocational and Employment Opportunities; and - Increased Complexity of Need; • Housing; and • Transport. • • •

Identification of Carers; The relationship between Carers and Service Providers; Information and Training; Support Services; Employment; and Help for Young Carers.

Carers are real and equal partners in the provision of care; Carers need flexible and responsive support; Carers have a right to a life outside caring; Caring should be freely chosen; and Government should invest in carers.

LISTEN DIRECTLY TO DISABLED PEOPLE AND CHILDREN SUPPORT FAMILY /CARERS AND FOCUS ON PREVENTION PREPARING DISABLED ADULTS AND CHILDREN FOR CHANGE VALUE THE WORKFORCE RECOGNISE THE CONTRIBUTION OF THE NGO SECTOR HELP CHANGE ATTITUDES THINK ACCESSIBILTY