Perspectives towards disability and role of health promotion

Perspectives towards disability

1. 1 Where does India stand: role of Physiotherapists Perspectives towards disability: from dysfunction to function Dr. Saumen Gupta , PhD

2. How the perspective changed over years ? Conventions – creating a framework , creating an environment, creating a draft, creating precursors 2

3. Timelines – Conventions World Programme of Action Concerning Disabled Persons 1982 Standard Rules on the Equalization of Opportunities for Persons with Disabilities ( 1993) Asian and Pacific Decade of Disabled Persons, 1993-2002 International Year of Disabled Persons 1981 The Convention on the Rights of Persons with Disabilities 2006 United Nations Decade of Disabled Persons (1983 - 1992) Biwako Millennium Framework for Action 2002

4. How we have shaped dysfunction into function ? - Creating precursors - Laws - Policy - Health care - Technology – integration of tech in health care 4

5. Timelines - Laws The Rehabilitation Council of India Act, 1992 Asian and Pacific Decade of Disabled Persons, 1993-2002 The Mental Health Act, 1987 United Nations Decade of Disabled Persons (1983 - 1992) Rights of Persons with Disabilities Act, 2016 The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 The National Trust Act, 1999

6. 6 Policy - - - Persons with Disabilities ( Divyangjan ) in India - A Statistical Profile : 2021 Policy document Participation Environmental barriers Medical model to social model Adoption of ICF in disability surveys

7. 7 Provisions in the constitution State shall, within the limits of its economic capacity and development , make effective provision for securing the right to work, to education and to public assistance in cases of unemployment, old age, sickness and disablement and in other cases of undeserved want. Article 41 of Constitution of India Lays down an obligation on the State to promote with special care the educational and economic interests of the weaker sections of the people and protect them from social injustice and all forms of exploitation. Article 46 of Constitution of India

8. 8 Provisions in the constitution “Social welfare, including welfare of the handicapped and mentally retarded.” (Entry No. 26) Eleventh Schedule to Article 243-G: “Safeguarding the interests of weaker sections of society, including the handicapped and mentally retarded.” (Entry No. 09) Twelfth Schedule to Article 243-W:

9. - Incidence and prevalence of disability - cause of disability - Age at onset of disability - Facilities available to the persons with disability - Difficulties faced by persons with disability in accessing/using public building and public transport - Arrangement of regular care giver, out - of pocket expenses relating to disability Objective of the survey was to estimate indicators National sample survey NSS Framework of questions for NSS , changed from 2001 to 2011 NSS

10. Difference in definition Differences in classification of disabilities Differences in procedure adopted for identification of disabilities Persons with Disabilities in its 76 th round National sample survey NSS Framework of questions for NSS , changed from 2001 to 2011 NSS

11. Persons with Disabilities in its 76 th round Policy (in terms of skill & accessibility) Deendayal Disabled Rehabilitation Scheme (DDRS) NSS District Disability Rehabilitation Centers (DDRCs) Assistance to Disabled Persons for Purchase / Fitting of Aids / Appliances (ADIP) Accessible India Campaign/ Sugamya Bharat Abhiyan Awareness Generation and Publicity Scheme Research on Disability Related Technology, Products Unique Disability ID Project (UDID) Incentive Scheme for providing employment augmentation of Braille Presses State Spinal Injury Centre

12. Include the development of rehabilitation professionals Policy (in terms of skill & accessibility) National Fund for Persons with Disabilities Rehabilitation Measures: National Handicapped Finance and Development Corporation (NHFDC) National Awards for the Empowerment of PwDs Physical rehabilitation Educational rehabilitation Economic rehabilitation Including vocational education Dignified life in society.

13. 13 Health care insurcance Niramaya Health Insurance Scheme Swavlamban Health Insurance Scheme Coverage Limit - 1 lakh Coverage: Ongoing Therapy: ₹10,000, Hospitalization: ₹70,000, Expenses: ₹1,000, Alternative Medicines: ₹4,500, Outpatient Department (OPD): ₹14,500 Premium - Family Income < ₹15,000: ₹250; > ₹15,000: ₹500 Coverage Limit - 2 lakh Coverage: disabled person, their spouse and up to two children Premium - ₹3,100 (only 10% has to be paid from your pocket, the rest will be funded by the Government)

14. Technology Priority-setting exercise for shortlisting National list of Essential assistive Products (NLEAP)- ICMR - PRIORITIZED TOP 21 ASSISTIVE PRODUCTS – 2023 National Centre for Assistive Health Technology ICMR – AIIMS & IIT M, IIT D, Assistive technologies for handicapped – IIT 14

15. 15 Technology

16. Technology Outdoor mobility device - A dd-on mobility device which can be attached externally to a manual wheelchair Same product can be used as a sitting chair and as a standing frame. Installable swivel seat mechanism Mobile app for the deaf Real-time text to braille converter Brain-controlled mobile application 16

17. 17 Role of Physiotherapy Most of the institutions highlight the teamwork approach. It would be correct to say that Physiotherapy is the link in the chain of management

18. 18 Role of Physiotherapy Dysfunctions and physiotherapists roles Lead Adjunct / contributing Supportive Physical function √ Social function √ √ Cognitive function √ Physical function Cognitive function Social function Lead Role Adjunct role Supportive role

19. Mapping roles in CBR matrix HEALTH EDUCATION LIVELIHOOD SOCIAL EMPOWERMENT PROMOTION EARLY CHILDHOOD SKILLS DEVELOPMENT PERSONAL ASSISTANCE ADVOCACY & COMMUNICATION PREVENTION PRIMARY SELF-EMPLOYMENT RELATIONSHIPS & MARRIAGE COMMUNITY MOBILISATION MEDICAL CARE SECONDARY & HIGHER WAGE EMPLOYMENT CULTURE & ARTS POLITICAL PARTICIPATION REHABILITATION NON-FORMAL FINANCIAL SERICES RECREATION & LEISURE SELF HELP GROUP ASSISTIVE DEVICES LIFELONG LEARNING SOCIAL PROTECTION JUSTICE DISABLED PEOPLES ORGANISATION Dysfunctions and physiotherapists roles Physical function Lead Adjunct Supportive Social function Adjunct Supportive Cognitive function Lead Adjunct

20. What are the ways we can achieve more capability to deal with disability ? 20

21. Role of physiotherapists Research (gather PUBMED data on publications ) Projects held by Physiotherapy departments Number of govt. institutions imparting PhD / higher education Vidwan profile Workshops and conferences conducted Research

22. Role of physiotherapists Master’s and PhD Multidisciplinary PhD Horizontal growth Multi-disciplinary education Higher Education

23. Role of physiotherapists Unfortunately, there is no credible source of information on practice Many physiotherapist have made their mark in sports sciences Need to look at inclusion of people with disability in other areas like vocational rehabilitation Special education Return to work and ergonomics Practice & entrepreneur

24. Disabling and enabling situations ? 24

25. 25 How to view disability ? - - - ‘Personal factor’ vs ‘interactive process between personal and environmental factors’ ICF vs DCP Participation Environmental barriers Medical model to social model Adoption of ICF in disability surveys

26. 26 Superior view both in vision and action ‘Personal factor’ vs ‘interactive process between personal and environmental factors’ ICF vs DCP - Medical model and social model - Result of the interaction between the individual’s health condition and contextual factors - Influence of the environment not clearly identified conceptually CM Medical model to social model - Anthropological model of human development and disability - Result of the interaction between intrinsic individual factors and extrinsic environmental factors -Directly influences social participation, incorporated as a determinant Classification of functioning model Disability Creation Process model CP CE

27. 27 Ways to intervene Disability AND Public health Disability in public health is grounded on following principles - Disability does not equate to illness - The environment is a crucial factor (either a facilitator or a barrier) in the health and well-being of people with disabilities - People with disabilities, like any targeted population, should be intimately involved with any activities affecting them

28. 28 Ways to intervene Disability AND Public health - Increase or decrease in opportunities for people with disabilities affect participation in societal activities - Environmental barriers must be removed, including barriers to participation in health programs and facilities - Assistive technologies that contribute to health and wellbeing should be considered in the realms of public health

29. 29 Ways to intervene Disability AND Public health - Public health interventions - disability prevention includes both prevention of new primary disabilities or impairments, and prevention of the adverse outcomes of disability - Some diseases occur only once and person does not recover - Secondary conditions and their impact / limitation should be kept in mind - Subgroups include aging with disability, Maternal and child health services in disabled

30. 30 Physiotherapy AND Public Health Amalgamation of Physiotherapy in Public Health With unique skills, physiotherapy has an invaluable contribution to make in each of these areas, creating huge opportunities for the profession Chartered Society of Physiotherapy, 2017

31. Public health surveillance

32. Public health surveillance An ongoing collection, analysis, and interpretation of health data essential to public health practice, closely integrated with timely dissemination of information for intervention Surveillance system ≠ other data systems (surveys, routine records, or research databases) Surveillance is ongoing and linked to intervention

33. Uses Monitor current status Document a trend (Changes over time ) Snapshot status Surveillance system evaluates interventions

34. Deficiency in public health systems Health surveillance Index Automated Overall health index, based on composite indices, Heart health Nutrition or Health care utilisation indices, Can be used to compare health trends over time and across geographical areas

35. Deficiency in public health systems Health surveillance Index Automated Automated public health decision making warning levels and action levels should be established Starts the intervention and health systems to intervene with standing orders

36. Message Need of supportive health policy to reinforce surveillance as a frontline in public health and stages of rehabilitation

37. " Are Western concepts of health/ disability / independence entirely translatable to India?"

38. Strategizing priorities in disability Surveillance (pathways to disability) How to get parent on board? Registry – access to the registry Preparing towards inclusion

39. Developing model of surveillance - A good basic background is the starting point - Theory and reviews will add to knowledge – what exists and what does not - what are the phenomena's which appear or tend to change - How does Body Structure change ? - How does Body Function change

40. Epidemiology of limitations At risk of developing secondary disabilities (Marge 1999) Mostly happen in BS and BF categories Core sets Body Structure Body Function Activity and Participation Structure of lower extremity Structure of upper extremity Additional musculoskeletal structures related to movement Structure of trunk Neuro-musculoskeletal and movement related functions Control of voluntary movement Sensation of pain Gait pattern functions Recreation and leisure Self-care Walking Mobility  

41. 41 41 The twenty-eight states are categorized along with the union territory adjoining states into five cultural zones

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44. 44 Model I Model II Participation 66.6% 47.8% Quality of Life 53.5% 52.1%

45. Model I 45 Model II

46. Data sharing Not enough data to make policies Govt does not have information about registered PWDs in NGO which can used for surveillance There is no comprehensive system to track impairments- use better outcomes or use outcomes which can followed in time Use of uniform system of documentation which actually helps prioritise management proactively - Skashama

47. Assistive technology Not only for mobility , but all also for all the participation areas Everyone's responsibility

48. Life care planning Planning - keeping in mind the future needs Life care planning is an individual centred activity that can facilitate aspects of daily living for a person with a chronic health condition, or disability A life care plan (LCP) is a working document that describes information for the provision of appropriate services and support, and must be updated regularly to capture any changes in situation It should be easy to use, culturally appropriate and legally sound

49. Burden of the dysfunction/ disabling conditions Secondary loss of income and cost of care Actual health cost Social costs Emotional costs Economics costs Caregiver distress Caregiver fatigue Delinquency School dropout Poor employability Prevention Follow-up Remediation rehabilitation Support, respite care, Institutionalization Vocational rehabilitation, novel employment opportunities

50. Registry based tracking is absent not available No surveillance SOPs are not in the DNA There is no effort in recognizing medical emergencies, support system and red flags – the practices are not uniform. Lacking

51. Recognising phenotypes Need for recognising phenotypes – and administer therapy appropriately and not just the run of mill interventions

52. Policy Implications 52

53. Sustainable surveillance programme should be deployed to monitor indicators of physical functioning Need for national registry 53 Policy implications

54. Surveillance 54 Take Home Message

55. Thank you 55