People with Disabilities in India: From Commitment to Outcomes

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7.45 Previous research and that for this report indicates quite clearly that there is a major awareness raising agenda on disability among family members of PWD. This can range from increasing knowledge on the causes and treatment of disability, entitlements under public schemes and availability of NGO and private services for PWD, exposure to success stories of PWD to raise awareness of the potential of PWD with the right opportunities, and other issues. While awareness campaigns often focus on the community, it seems even more critical as a first step to target families of PWD and PWD themselves (for whom self-esteem and other issues contribute to self-limitations in many cases). 7.46 The growth of the self-help movement also holds out significant potential for PWD. 207 While experience with disability-specific SHGs is relatively limited in much of the country, certain states indicate the potential of PWD to mobilize and the potential for such mobilization to produce results. Karnataka is a case in point. Organizations such as Action for Disability and Development (ADD) India and Samuha have had sustained experience in promoting and building the capacity of PWD SHGs. In the case of Samuha, the SHGs are structured on a three tier level, with federations at taluk/district levels and a statewide network. Field work for this report reveals that these groups have improved accountability of district authorities in service delivery, as well as raising awareness among PWD of their rights, and issues related to detection, prevention of disabilities, and livelihoods. 208 The experience of ADD in promoting formation of and strengthening PWD SHGs, and the achievements of those groups, is presented in Box 7.5. The Karnataka SHG experience is also linked to the relatively widespread penetration of Community- Based Rehabilitation (CBR) in the state (CBR is discussed in Chapter 3). Box 7.5: ADD India and the sangham approach to PWD SHGs ADD India has had a sustained program of support to SHGs of PWD in Karnataka and Tamil Nadu. As of 2004, it was estimated to have included around 20,000 people in its SHGs, a sharp increase from around 5,000 people in the mid-1990s. It has promoted SHG of PWD on a cross-disability basis, using a model of SHG with 7-20 members which meets twice monthly. Office bearing is rotated among the membership on the basis of elections. The SHGs (known as sanghams or associations) discuss the whole range of PWD issues in their village, and also take matters up with the local authorities. Many of them have a mutual savings system from which members can borrow either in emergencies or for income generation purposes. The sangham membes also participate in village development activities such as immunization drives. The PWD sanghams also link with womens’, youth and other groups to lobby on matters of mutual interest. The sanghams have also mobilized greater political participation among PWD. For example, in AP in the late 1990s, 31 PWD were elected to local panchayats (of a total of 78 standing), and members ensure regular representation in gram sabhas. In order to spread their expertise in facilitation and support to PWD SHGs, ADD have a training programme for NGO staff who wish to support similar efforts. The partnership with other NGOs is a key element of ADD’s model of promoting PWD SHGs. Source: UNESCAP (1997); ADD (UK) annual report, 2003-04. 7.47 The challenge in SHGs is often to go to scale in terms of wide coverage. This may be an even bigger challenge for PWD SHGs, where capacity building needs may be greater in some cases. However, the experience of the AP Velugu programme (now IKP) indicates that wide coverage of PWD SHGs can be achieved within the context of major programs. As of late 2005, AP had over 130,000 people with disabilities formed into almost 15,000 SHGs which are in some areas federated at mandal and district levels. A similar initiative is also in progress in TN under a World Bank-financed community development project. While strengthening their capacity and 207 UNESCAP (1997) provides a useful overview of experience in the Asia-pacific region with SHGs of PWD. 208 Bhambani, op.cit. -141-
moving to improved outcomes for PWD remains a challenge, the AP experience deserves close attention to assess the scope for a widescale PWD SHG movement. C. Conclusions and recommendations 7.48 There are both policy and institutional reform needs in the disability sector. At this point, a focus on outcomes for people with disabilities would suggest that the priority should be on institutional reform and strengthening, reviewing the institutional framework in the disability sector and strengthening the capacity of institutions to deliver on policy commitments. Nonetheless, several broad policy reforms remain important. They include: 7.49 Policy Reforms. Disability policy reforms are needed in several areas: First, there should be serious consideration given to broadening the categories of disabled people included in the PWD Act, which may in any event be necessary in light of the new UN Convention to which India is a signatory. This may also require a de-linking of definitional inclusion of different groups with specific entitlements under the Act. While fiscal and other capacity issues suggest that not all disabled people may be supported through public interventions, this does not seem a good reason to exclude them from inclusion as PWD under the Act. Legislation and policy should ensure that clear obligations for involvement of persons with disabilities themselves at all stages of policy development, implementation and monitoring. Second, MSJE and central and state Commissioners’ offices should develop programs in collaboration with DPOs and NGOs for awareness raising of officials, service providers, PRI representatives and communities on programs for people with disabilities. A periodic monitoring of awareness, with particular focus on lagging states and remote regions, should be put in place to assess impact. States should be strongly encouraged to develop their own disability policies which elaborate a credible strategy for meeting their commitments under the PWD and other acts. The example of Chhattisgarh offers a useful example of such a policy. Finally, there should be a process for basic benchmarking of feasible policies and programs for people with disabilities in the areas which are currently subject to the economic capacity proviso. 7.50 Institutional reforms would seem desirable in several directions: First, the institutional framework at all levels needs to have a substantially strengthened direct role for persons with disabilities themselves. Second, responsibility for specific programs for PWD should be brought clearly under relevant line Ministries in some cases, e.g. bringing all education policies under MHRD as noted above. Third, GoI may like to consider overhauling the current coordinating mechanism into a National Commission for PWD, which would have the status and convening power which is currently under-developed in the sector. It is important that such a body be a coordination and oversight agency, and not be viewed as a separate “silo” for disability. Such an initiative would only make sense if the structural problems of coordination within and between levels of government, and between the public and non-governmental sectors are addressed. It would also require a transition strategy if the current Commissioners’ Offices are to be merged into a future Commission, so that there is not simply duplication of responsibilities. In this light, any move towards a Commission should not forestall the urgent need to strengthen the capacity of Commissioners’ Offices to perform their current functions, in particular on grievance redressal. Fourth, the enforcement mechanisms for the Act need to be clarified and strengthened. One option would be a Disability Tribunal with direct enforcement powers. This has pros and cons, as there is a risk of “over-judicializing” the grievance mechanisms for PWD and thus reducing their access. An alternative is obviously strengthening of both central and state Commissioners’ offices to play their grievance redressal function more effectively. A review of human resource and financial capacity of central and state Commissioners’ offices is also needed, and guidelines on minimum staffing levels introduced. The national policy and legislation needs to reflect the -142-
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PEOPLE WITH DISABILITIES IN INDIA:
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Abbreviations and Acronyms ADL ANM
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Table of Contents EXECUTIVE SUMMARY
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Figure 5.3: Employment rates of PWD
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Box 5.4: A Jobs Fair Bringing Emplo
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NGOs, both quantitative and qualita
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Out of school rates for CWD are hig
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needs to respond more proactively t
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government strategies for promoting
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Safety Net Schemes 33. Safety nets
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40. In early 2006, a National Polic
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should move to implement the Act’
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54. Addressing current and future p
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disability SHGs, which has been sho
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have comparative advantage is putti
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extent of individual functioning du
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converting income into well-being o
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21. In light of the challenges that
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not be explained by this. The major
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Table 1.2: Disability Prevalence ra
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The share of disability impact due
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• It is also important to recall
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1.17. A second issue with obvious i
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Figure 1.9: Employment rates of PWD
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Box 1.2: Census questions on disabi
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Box 2.1: Disability in Indian mytho
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• overall, there is low acceptanc
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Table 2.2: Positive perceptions of
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different areas, as for example the
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governmental sectors drive home the
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Box 2.4: Raising awareness and chan
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• onset of mental disabilities is
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3.9. Locomotor disability is the ca
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B. Prevention of Disability 3.15. A
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3.20. The NBCP, like other vertical
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almost three times more likely to h
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PWDs. The scheme operates in 11 cen
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Figure 3.4: Proportion of disabled
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Table 3.11: Type of Service Accesse
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Urban 1.46 North 1.40 South 1.10 Ea
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Box 3.1: WHO’s “Ten Question Pl
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3.51. (f) Financial barriers to acc
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including for road accidents, and e
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A. Indian and International Policy
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4.9. A specific feature of SSA is a
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• significant gender differential
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Out of school rates for CWD are hig
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Only around 5 percent of children w
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4.30. (b) Financial performance of
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only factor contributing to both po
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The numbers of CWD identified by SS
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IE training options. The impacts of
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part of the authorities to increase
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well beyond the needs of CWD alone.
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performance in the schooling system
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DLROs has contributed to West Benga
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CHAPTER 5: EMPLOYMENT OF PERSONS WI
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atios, while others such as J&K, Bi
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Figure 5.8: Employment rates over t
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Page 121 and 122: of age and disability status. Multi
Page 123 and 124: 5.23. For males in the survey, a de
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Page 127 and 128: 5.34. Nonetheless, there has been u
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Page 131 and 132: exchanges are in any event servicin
Page 133 and 134: Source: NHFDC website reporting cum
Page 135 and 136: Box 5.5: Good practice in NGO skill
Page 137 and 138: D. Conclusions and recommendations
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Page 143 and 144: Table 6.4: Coverage of disability s
Page 145 and 146: Table 6.6: Contributions and benefi
Page 147 and 148: 6.24. Easily the largest scheme for
Page 149 and 150: 6.35. While the design of the insur
Page 151 and 152: people. The transfer under NOAPS wa
Page 153 and 154: 7.4 (a) The Persons with Disabiliti
Page 155 and 156: 7.8 (ii) Sectoral policy issues in
Page 157 and 158: • in the area of education, the p
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Page 163 and 164: 7.28 There is little detailed analy
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Page 173 and 174: CHAPTER 8: ACCESS FOR PEOPLE WITH D
Page 175 and 176: Box 8.1: International and regional
Page 177 and 178: The comparison of institutional arr
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Page 181 and 182: ANNEX 1: COMPARING THE INCOMPARABLE
Page 183 and 184: of prevalence estimates across the
Page 185 and 186: person will be treated as having
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