Transcript Paul Martin-Developing the Strategy for People with a Disablity

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 and 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
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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
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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)
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
 •A person-centred planning and lifecycle approach
 Partnership
 The promotion of health and wellbeing
 •Enhancing access to a range of community,
technological and advocacy services, including for
example:
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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;
 •Skilled Workforce
 •Appropriate commissioning and service provision to
promote efficient and effective care; and
 •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
• •£13.221m - hospital expenditure (including inpatient, out-patient and day cases);
• •£61.245m - personal social services (including
social work services, residential and nursing
homes, domiciliary care and day care services);
• •£23.601m - 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.
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 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