2. Overview of Disability 2003 Dr Ger Craddock PhD Centre for Universal Design

3. What is it Need to define? Or ………….. Do we? Some definitions……..

4. Commission on the Status of People with disabilities A person with a physical, mental, intellectual, emotional or sensory impairment and who, due to a lack of receptiveness and adaptability in existing social structures and otherwise, encounters obstacles to participation on equal or equally effective terms will all others in all aspects of the community; or A person with a record of such impairment or A person who is so regarded by third parties

5. Education Act 1999 The total or partial absence of a person’s bodily or mental functions, including the absence of a part of a person’s body; The presence in the body of organisms causing, or likely to cause, chronic disease or illness; The malfunction, malformation or disfigurement of a part of a part of a person’s body; a condition or malfunction which results in a person learning differently from a person without the condition or malfunction

6. Or a condition, illness or disease which affects a person’s thought processes, perception of reality, emotions or judgement or which results in disturbed behaviour

7. National disability Authority Act 99 “disability”, in relation to a person, means a substantial restriction in the capacity of a person to participate in economic, social or cultural life on account of an enduring physical, sensory, learning, mental health or emotional impairment

8. International Perspective of disability WHO - World Health Organisation –1980 ICIDH Impairment Disability Handicap –1997 ICIDH - 2 Impairment Activities Participation

9. World Health Organization Definitions (1980) Impairment A loss or abnormality of psychological or anatomical structure or function disability any restriction or lack (resulting from impairment) of the ability to perform an activity in the manner or within the range considered normal for a human being;

10. World Health Organization Definitions (1980) Handicap : a disadvantage for a given individual, resulting from an impairment or a disability that limits or prevents the fulfillment of a role that is normal for that individual (in relation to age, sex, social and cultural factors)

11. New Perspective

12. International Classification ICIDH 1980 ICIDH-2 ICF ICF – International Classification of Functioning, Disability and Health Models of disability Medical Social Business – Administrative

13. ICF World Health Organization Classification Assessment Surveys & Terminology Group as the New Member in the WHO Family of International Classifications www.who.int/classification/icf

14. Aims to provide a scientific basis for consequences of health conditionsto provide a scientific basis for consequences of health conditions to establish a common language to improve communicationsto establish a common language to improve communications to permit comparison of data across:to permit comparison of data across: – countries – health care disciplines – services – time to provide a systematic coding scheme for health information systemsto provide a systematic coding scheme for health information systems

15. ICIDH-1 ICF Conceptual transformationConceptual transformation User needsUser needs Advocacy scienceAdvocacy science –Service Outcomes: measure to manage –Health Measures: evidence to inform policy –Causality: multi-linear web

16. Foundations of ICF Human Functioning - not merely disability Universal Model - not a minority model Integrative Model - not merely medical or social Interactive Model - not linear progressive Parity - not etiological causality Context - inclusive - not person alone Cultural applicability - not western concepts Operational - not theory driven alone Life span coverage - not adult driven

17. Human Functioning not disability alone Body functionsvs impairmentsBody functionsvs impairments Body StructuresBody Structures Activitiesvs activity limitationActivitiesvs activity limitation 1980 disability 1980 disability Participationvs handicapParticipationvs handicap

18. Participation or Handicap? neutral language “politically correct” “politically correct” correct use correct use – intervention – opportunity –positive aspects

19. Universal Model vs. Minority Model Everyone may have disability ContinuumMulti-dimensional Certain impairment groups CategoricalUni-dimensional

20. Medical versus Social Model PERSONAL problem vs SOCIAL problemPERSONAL problem vs SOCIAL problem medical care vs social integrationmedical care vs social integration individual treatment vs social actionindividual treatment vs social action professional help vsindividual & collective responsibilityprofessional help vsindividual & collective responsibility personal vs environmental adjustment manipulationpersonal vs environmental adjustment manipulation behaviour vsattitudebehaviour vsattitude care vs human rightscare vs human rights health care policy vs politicshealth care policy vs politics individual adaptation vs social changeindividual adaptation vs social change

21. Sequence of Concepts ICIDH 1980 Impairments ImpairmentsDisease or or disorde r Disabilities Disabilities Handicaps

22. Health Condition ( disorder/disease ) Interaction of Concepts ICF 2001 Environmental Factors Personal Factors Body function&structure (Impairment ) Activities(Limitation)Participation(Restriction)

23. Equity / Parity Loss of limb Loss of limb landmines = diabetes = thalidomide Missed days at usual activities Missed days at usual activities flu = depression = back pain = angina Stigma Stigma leprosy = schizophrenia = epilepsy = HIV

24. Contextual Factors Person Ýgender Ýage Ýother health conditions Ýcoping style Ýsocial background Ýeducation Ýprofession Ýpast experience Ýcharacter style Environment ÝProducts ÝClose milieu ÝInstitutions ÝSocial Norms ÝCulture ÝBuilt-environment ÝPolitical factors ÝNature

25. Cultural Applicability Conceptual and funtional equivalence of Classification Conceptual and funtional equivalence of Classification Translatability Translatability Usability Usability International Comparisons International Comparisons

26. Structure Classification Parts Components Constructs/qualifiers Domains and categories at different levels at different levels ICF Part 1: Functioning and Disability Part 2: Contextual Factors Body Functions and Structures Activities and Participation EnvironmentalFactorsPersonalFactors Change in Body Structures StructuresCapacityPerformanceFacilitator/Barrier Item levels: 1 st 2 nd 3 rd 4 th Item levels: 1 st 2 nd 3 rd 4 th Item levels: 1 st 2 nd 3 rd 4 th Change in Body Functions Functions Item levels: 1 st 2 nd 3 rd 4 th Item levels: 1 st 2 nd 3 rd 4 th

27. ICF Components Body Functions &StructuresActivities&Participation Environmental Factors BarriersFacilitatorsFunctionsStructuresCapacityPerformance

28. Body Functions and Structures Skin and related structures Functions of the skin and related structures Structures related to movement Neuromusculoskeletal and movement-related functions Structures related to the genitourinary and reproductive systems Genitourinary and reproductive functions Structures related to the digestive, metabolic and endocrine systems Functions of the digestive, metabolic and endocrine systems Structures of the cardiovascular, immunological and respiratory systems Functions of the cardiovascular, haematological, immunological and respiratory systems Structures involved in voice and speech Voice and speech functions The eye, ear and related structures Sensory functions and pain Structures of the nervous system Mental functions

29. Activities and Participation 1Learning &Applying Knowledge 2General Tasks and Demands 3Communication 4Movement 5Self Care 6Domestic Life Areas 7Interpersonal Interactions 8Major Life Areas 9Community, Social & Civic Life

30. Environmental Factors 1. Products and technology 2. Natural environment and human- made changes to the environment 3. Support and relationships 4. Attitudes 5. Services, systems and policies

31. ICF Applications Health sectorHealth sector Social securitySocial security Education sectorEducation sector Labour sectorLabour sector Economics & development sectorEconomics & development sector Legislation & lawLegislation & law Other ….Other ….

32. ICF in health & disability statistics Common DomainsCommon Domains –Mobility- Cognition- Mood –Self Care- Usual Activities... link data from both health and disabilitylink data from both health and disability Multiple ComponentsMultiple Components overcomes the “impairment” focusovercomes the “impairment” focus Environmental FactorsEnvironmental Factors ComparabilityComparability

33. ICF Applications Health sectorHealth sector Social securitySocial security Education sectorEducation sector Labour sectorLabour sector Economics & development sectorEconomics & development sector Legislation & lawLegislation & law Other ….Other ….

34. ICF in health & disability statistics Common DomainsCommon Domains –Mobility- Cognition- Mood –Self Care- Usual Activities... link data from both health and disabilitylink data from both health and disability Multiple ComponentsMultiple Components overcomes the “impairment” focusovercomes the “impairment” focus Environmental FactorsEnvironmental Factors ComparabilityComparability

35. Needs assessmentNeeds assessment Outcome assessmentOutcome assessment Utilization patternsUtilization patterns Comparison of different interventionsComparison of different interventions Consumer satisfactionConsumer satisfaction Service performanceService performance –outcomes –cost-effectiveness Electronic recordsElectronic records Clinical terminologyClinical terminology ICF in clinical practice & management

36. ICF in policy making assessment of population healthassessment of population health impact of disabilityimpact of disability –economic –social evidence-base for policy makers on different policy interventionsevidence-base for policy makers on different policy interventions –responsiveness of services –efficiency –performance assessment

37. ICF research applications joint assessment of disease and functioningjoint assessment of disease and functioning –description of association –intervention response & synchrony of change –explanatory power on: utilizationutilization needsneeds costscosts outcomesoutcomes –Cost-effectiveness of interventions –Unified approaches

38. ICF Domains used in International WHO Surveys Health Domains VisionVision HearingHearing SpeechSpeech DigestionDigestion Bodily excretionBodily excretion FertilityFertility Sexual activitySexual activity Skin & disfigurementSkin & disfigurement BreathingBreathing PainPain AffectAffect SleepSleep Energy / vitalityEnergy / vitality CognitionCognition CommunicationCommunication Mobility and DexterityMobility and Dexterity Health Related Domains Self-care: Including eating Self-care: Including eating Usual activities: household activities; work or school activities Usual activities: household activities; work or school activities Social functioning: interpersonal relations Social functioning: interpersonal relations Participation: societal participation including discrimination/stigma Participation: societal participation including discrimination/stigma

39. HEALTH CONDITION IMPAIRMENT ACTIVITY LIMITATION PARTICIPATION RESTRICTION Leprosy Loss of sensation of extremities Difficulties in grasping objects Stigma of leprosy leads to unemployment Panic Disorder Anxiety Not capable of going out alone People's reactions leads to no social relationships Spinal Injury Paralysis Incapable of using public transportation Lack of accommodations in public transportation leads to low participation Juvenile diabetes Pancreatic dysfunction None (impairment controlled by medication) Does not go to school because of stereotypes about disease Vitiligo Facial disfigurement None participation in social relations owing to fears of contagion Person who formally had a mental health problem and was treated for a psychotic disorder None Denied employment because of employer's prejudice Examples of disabilities that may be associated with the three levels of functioning linked to a health condition.

40. Policy and Legislation Re Disability

41. Three principles informed recent international legislation and practice: The recognition that disability is a social rather than a medical issue. The adoption of a civil rights perspective, and The recognition of equality as a key principle of the human rights approach.

42. Irish Legislation Universities Act 1997 Employment Equality Act 1998 Education Act 1998 Equal Status Act 1999 Disability Bill 2001 Education Disability Bill 2002

43. Universities Act 1997 All Universities to have a policy Doc re: A) Access to the university and education for disadvantaged, people with disabilities and under represented sections of society B) Equality, including gender equality, in all activities of the university

44. Education Act 1998 Deals primarily with issues at 2 nd level Ed Main objectives to promote equality of access to and participation in education Definition of Disability

45. Employment Equality Act 1998 Promotes equality between employed persons as well as vocational training Outlaws direct and indirect discrimination on the grounds of gender, marital status, family status, sexual orientation, religious belief, age, disability, race and membership of the traveller community with regard to employment

46. Equal Status Act 1999 Deals with Discrimination outside employment. Relates to 3 rd level institutions Can’t Discriminate Admission criteria Access of a student to any course, facility Any other term or condition re participation Expulsion of a student

47. Disability Bills Disability Bill 2001/Education Bill 2002 Reducing the rights of people with disabilities Definitions medical Long implementation of access –Trains accessible by 2010-15 –Platforms in Train stations 2015-20

48. Disability Bill 2001

49. Areas Covered Accessible public services, public buildings and public information Accessible public transport including buses, trains and taxis Assessment of needs and provision of related health and personal social services Advocacy support and services, through Comhairle Sign language interpretation for deaf or hearing impaired people, including a videophone service Measures to support the integration of people with disabilities into employment

50. Areas Covered The provision of genetic testing and a moratorium on genetic testing for commercial purposes A centre of Excellence in Universal Design

51. Part 4: Health and personal Social Services provided by Health Boards “assessment of need” –Where a person with a disability has applied to a health board for a health service, the health board shall undertake or arrange for an assessment to be made of the person’s needs in that respect The assessment of need shall be reviewed from time to time to take account of any change in the person’s circumstances The Health Board shall insure that, to the greatest practicable extent- the person is involved in the assessment… or a representative of the person is involved

52. Provision of Services The health board concerned shall take such steps as are reasonable to provide the service as soon as practicable and to the greatest practicable extent. The health board may provide the service either directly or by arranging with a voluntary body or other person to provide it on its behalf.

53. Deciding Officer The deciding officer will be a member of the health board staff. He/She will decide on the provision of health services to persons with disabilities.

54. Complaints Officers The Minister for Health and Children will designate complaints officers.

55. Centre for Excellence in Universal Design The centre shall facilitate the achievement of excellence in universal design by the development and promulgation of standards in that regard. Universal design of electronic systems –Develop standards of excellence –Recommend those standards for adoption by bodies operating in the field of information technology and telecommunications –Encourage compliance by those bodies with international best practice in universal design –Undertake multidisciplinary research and development studies –Provide a practical and theoretical basis for Assistive technologies

56. Centre of excellence in Universal Design Introduce the principles of universal design to courses of training at all levels…affecting the environment –Professional exams include material relating to the principles –Courses of training available –architects, engineers, town planners, system analysts, software designers, transport providers and designers of passenger transport vehicles and vessels –Training trainers –Raising general awareness of the difficulties encountered by persons with disabilities in relation to the environment –Providing the knowledge, skills and values to instil new attitudes and behaviour towards achieving an environment that is universally designed-persons engaged in work affecting the environment

57. The Person The Disability Movement Definitions of Disability

58. The Person The person with a disability in an Irish Context The “experience of disability in Ireland went from benevolent to paternalistic charity to stubborn discrimination and exclusion and the experience of many working in the disability related sector is often one of deep frustration at the bureaucracy, delay, and confusion resulting from these attitudes, organisational fragmentation and sheer lack of required financial resources” [CIL 2000 p3]

59. Environmental Barriers Attitudinal Barriers Structural Barriers Knowledge Barriers Physical/access Barriers Responsibility Barriers Communication Barriers