Disability Status: Case Study of Delhi Metropolitan Region

Dr. Bupinder Zutshi

This study was supported by an educational grant from Ford Foundation

The present study examines the conceptual and theoretical aspects of disability sector in India with a special focus on magnitude, prevalence rates, incidence rates, characteristics and composition of disabled person in India. Special focus has been given to identify available services and facilities for disabled persons through government and non-government organizations with special reference to Delhi Metropolitan region.

The report has been divided into six parts excluding the executive summary, which presents main conclusions of the report for each part and also presents major recommendation of the report.

The lay out of the report is substantiated with the help of tables, maps, figures and diagrams for easy visual understanding.

Part-I examines the definitional and conceptual aspects of disability. It identifies various disability type groups based on specific physical, sensory and learning characteristics. It also attempts to trace and analyses international initiatives undertaken for the welfare of disability sector during last 50 years. The last section of this part examines national initiatives through legislation and other affirmative actions and initiatives to focus disability agenda for pro-active measures.

Part-II has been divided into seven sections. Each section examines magnitude, composition and characteristics of different types of disability / impairments. The disabilities/ impairments covered are all disabled, locomotor impaired, hearing impaired, vision impaired, speech impaired and mentally impaired. It examines the NSSO data collected for the disabled person through a sample surveys during 47th and 58th round in 1991 and 2002 respectively. The analysis includes state wise, gender wise and rural/ urban distribution of disabled persons depicting their magnitude, prevalence rates, incidence rate, degree of impairment, causes for impairment and a in depth analysis of demographic, social and economic characteristics of the disabled persons.

Part-III has been divided into three sections. It examines government services for the disabled persons in terms of developing national and regional institutes to support and create conducive environment for equal opportunities for disabled persons. Part-III also examines services and facilities provided by these national and regional institutes to disabled persons in India. The budget allocations for the disability sector welfare have also been presented in this section. Last section examines the concessions and other benefits provided to disabled persons for creating equal opportunities for their integration. It also analyses the status of implementation of the PWD-Act 1995 provisions in the states in India and by the central government.

Part-IV examines services and other facilities available for disabled person in the Delhi Metropolitan region. The analysis has been attempted both though primary and secondary sources of information. A details field survey was conducted in Delhi selecting 83 NGOs and voluntary organizations and 63 beneficiaries. The respondents included NGOs, Government organization personnel as well as disabled/-impaired persons seeking support from these organizations. Detailed analysis of the existing services as well as required services has been attempted on the basis of the field survey. Last section of the part documents the 'Good Practice- Initiatives' of NGOs and government organizations providing support to disabled persons in Delhi region.

Part-V of the report presents the broad conclusions and recommendations of the report. The recommendations are suggested based on the field survey data analysis, discussions with target groups and stakeholders and from the deliberations of the seminar organised in Delhi, where a large number of NGOs, government officials, target groups and other stakeholders were present.

A detailed list of references, literature reviewed and bibliography scanned for the study purpose is given in Part-VI of the report. These references, disability data and bibliography has been identified in libraries visited in Delhi, web search engines through internet and material collected from government departments and NGOs offices located in Delhi.

Last Part of the report documents annexes detailing NGOs working for Disability welfare in Delhi, NGOs and beneficiaries selected for a detailed field survey, field questionnaires used for the survey and a report on the seminar entitled " Services for Differently Abled Persons in India". The seminar was organised as a part of the research report to provide insights about disability sector in India through wider participation from stakeholders and target groups.

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Summary

Disability - Definition, Types, International and National Initiatives

• Defining disability is difficult to accommodate the expectations of all disabled groups. There are hundreds of different disabilities and there are, as many causes for these disabilities. Some people are born with disabilities; others become disabled later on in their lives. Some disabilities exhibit themselves only periodically like fits and seizures; others are constant conditions and are life-long. The severity of some stays the same, while others get progressively worse like muscular dystrophy and cystic fibrosis. Some are hidden and not obvious like epilepsy or haemophilia (impairment of blood clotting mechanism). Some disabilities can be controlled and cured while others still baffle the experts. Thus, finding a consensus on the different and frequently varying definitions of disabilities, whether sophisticated or practical, has never been easy. Some include total or partial impairment of senses and physical and intellectual capacities while defining disability. Others refer to a handicap or deviation of a social nature, injury or illness or incapacities to accomplish physiological functions or to obtain or keep employment. These definitions also reflect the consequences for the individual - cultural, social, economic and environmental- that stem from the disability.
• Disabled people do not form a homogenous group. They may be, the physically disabled, mentally retarded, the visually, hearing and speech impaired, those with restricted mobility or with so-called "medical disabilities" and learning disabilities. They can broadly be classified as Physical and Communication, Mental, Learning and Medical disabilities.
• The World programme of Action Concerning Disabled Persons have specified preventive, rehabilitation and equalization of opportunities actions for disabled persons, keeping in view the founding principles of the UN Charter, which are based on human rights, fundamental freedoms and equality of all human beings. It has suggested propagating social model through equalisation of opportunities through which the general system of society, such as the physical and cultural environment, housing and transportation, social and health services, educational and work opportunities, cultural and social life, including sports and recreational facilities, are made accessible to all. Equalization relates to the process of building a suitable environment to reasonably accommodate those needs of disabled persons.
• India has taken a big leap towards providing equalization of opportunities for disabled by adopting PWD-Act 1995. It is a significant step, which ensures equal opportunities for the people with disabilities and their full participation in the nation building. The Act provides for both the preventive and promotional aspects of rehabilitation like education, employment and vocational training, reservation, research and manpower development, creation of barrier-free environment, rehabilitation of persons with disability, unemployment allowance for the disabled, special insurance scheme for the disabled employees and establishment of homes for persons with severe disability etc.

Magnitude, Types and Characteristics

• The NSSO 58th round has estimated 18.49 million disabled persons in 2002, out of these 10.89 million were males and 7.59 million were females. About 57.50% disabled were having locomotor disability, while 10.88% were blind, 4.39% were having low vision, 16.55% were having hearing impairment, 11.65% had speech disability, 5.37% were mentally retarded and 5.95% were mentally ill.
• The prevalence rate was 1.77% in 2002 against 1.88% in 1991. The prevalence rate for males was 2% while it was 1.49% for females in 2002. Prevalence rates have shown declining trends during 1991-2002 for all disability types except for locomotor disability. Significant decline was registered for visually impaired persons during 1991-2002.
• The decline of prevalence rates for disabled persons among all disability types in age groups of less than 15 years and above 45 years is a welcome measure depicting appropriate awareness and medical care support. But increasing trends of prevalence rates for 15-44 age groups especially for locomotor impairment is a cause for worry and needs to be studied in-depth. A significant proportion of disabled persons were in the active working age group of 15-59 years especially among locomotor impaired, making not only themselves but their families also susceptible to social and economic uncertainties. Incidence rates has depicted significant declining trends during 1991-2002 for all types of disability groups in lower and high age groups due to appropriate preventive measures like awareness generation and medical care support, but increasing incidence rate during 1991-2002 among the age groups of 15-29 years for locomotor impaired persons needs further in-depth analysis.
• Fortunately about 60% disabled can function without aid/ appliances, while 13% cannot function even with aid and appliance and another 17% can take self care with the help of aid and appliance. Significantly 10% disabled have neither tried nor have access to aids and appliance and hence cannot take self-care. Thus measures need to be taken through the supply of appropriate aids and appliances to cover these 10% disabled, so as to reduce their dependence on other.
• As expected significant proportion of disabled were from scheduled castes, scheduled tribes and other backward classes. These groups require special attention through specific programmes to create awareness and support them through appropriate medical care and other rehabilitative measures. The social structure of disabled persons indicates that majority of them are never married or widowed/ divorced. Hence community support is required to rehabilitate them. A significant proportion is living with parents without spouses. Hence social security measures from government or community needs to be strengthened to support them in the later ages.
• The education level of disabled persons as compared to the general population trends depicts gloomy and depressing situation as about 59% disabled persons in rural areas and 40% disabled persons in urban areas were illiterate. Even among disabled literates, a significant proportion was educated only up to primary or middle level both in rural and urban areas. Provision of vocational training to the disabled person has yet to gain momentum as only 1.5% and 3.6% disabled population in rural and urban areas respectively had received vocational training in 2002. The educational scenario depicts that majority of disabled persons are not provided equal opportunities for education and even few who are enrolled in schools are not provided equal opportunity for middle, secondary and higher education.
• The NSSO survey 58th round in 2002, depicts that 62% and 89% males and females respectively in rural areas and 63.5% and 90.5% males and females respectively in urban areas were out of labour force. A distressing scenario for disabled persons depicts decline in proportion of self-employed in non-agricultural sectors in urban areas and in agricultural sector in rural areas during 1991-2002. Even the proportion of casual employees has declined during 1991-2002 for both rural and urban areas.
• The loss of job or change of job is one of the major psychological and mental problems associated with the onset of disability. Significantly 55.8% and 53.1% of these working people lost their job after the disability in rural and urban areas respectively. Another 13.2% in both rural and urban areas had to change their job due to the onset of the disability. Only 30.9% and 33.6% disabled persons continued with their jobs even after the onset of disability in rural and urban areas respectively.

Services and Facilities

• In consonance with the policy of providing a complete package of welfare services to disabled and handicapped individuals and groups, the Central government have set up national institutes along with their respective regional centres in each of the major area of disability. The thrust areas of these national institutes are development of manpower and of delivery models of services, which can have a widespread reach in the population. These institutes are: National Institute of Visually Handicapped (NIVH), National Institute of the Hearing Handicapped (NIHH), National Institute for Orthopaedically Handicapped (NIOH), National Institute for Mentally Handicapped (NIMH), The Institute for the Physically Handicapped (IPH) and National Institute of Research, Training and Rehabilitation (NIRTAR). These institutes run various specialized courses to train professional in the different areas of disabilities. These Institutes also run Out Patient Departments (OPD) clinics, which include diagnostic, therapeutic and remedial services. They also provide educational, pre-school and vocational services. These institutes have started outreach programmes with multi-professional rehabilitation services to the slums, tribal belts, foot hills, semi-urban and rural areas through community awareness programmes and community based rehabilitation facilities and services such as diagnostic, fitment and rehabilitation camps and distribution of aids and appliances to the disabled. Through outreach services, communities are sensitized on early-identification, prevention, intervention and rehabilitation of the disabled. Services such as vocational training and placement are provided in collaboration with NGOs. Technical know-how and information are also provided to NGOs, on infrastructure requirement for established service centers for the disabled.
• Government of India has developed several national, regional and district levels support centers to provide effective services to meet their requirements for aids and appliances, education, training and employments and other appropriate rehabilitation services. These macro, meso and micro level centres are located throughout the country to provide services at macro, meso and micro regional levels. The centers are Artificial Limb Manufacturing Corporation of India (ALIMCO), Indian Spinal Injury Center (ISIC), National Information Center on Disability and Rehabilitation (NICDR), Composite Regional Centers (CRC, Regional Rehabilitation Training Centers ( RRTCs), Vocational Rehabilitation Centers (VRCs), District Rehabilitation Centers ( DRCs). Specific funds have been allocated by the central government to these institutes and voluntary sector to support disabled persons.
• Both state and central Government has also provided Concessions and other facilities to disabled persons. The concessions and facilities include scheme of Integrated Education, scholarships and fellowships for education and vocational training, job reservation in Government Sector, economic assistance for disabled persons and other welfare measures like rebate in income tax, loans at soft interest rates, travel concession and specific poverty alleviation programmes for disabled persons.
• The implementation status of the PWD-Act 1995 has been analyzed and significant measures have been adopted by central government as well as by several state governments to implement the important provisions of the Act. However several state governments are still lagging behind in implementing these provisions.

Delhi - Services for Disabled Persons

• Based on the sample data collected by the NSSO 58th round, an estimated 77, 046 persons were projected as disabled persons, who were having at least one of the impairments in term of mental, vision, speech, hearing and locomotor disability. The gender distribution of disabled persons was 52,239 males and 24,102 females constituting 68% and 32% males and females respectively. Majority of the disabled persons (70.43%) were locomotor impaired followed by mentally retarded (7.70%), speech impaired (7.69%), hearing impaired (7%), mentally ill (6.24%), blind (5.26%) and low vision (2.14). The prevalence rates were 0.55%, while it was 0.69% for males and 0.38% for females.
• The disability incidence rates were very low in Delhi as compared to the national average, depicting appropriate measures like awareness and medical care support for taking preventive measures for controlling disability.
• Fortunately in Delhi about 51.5% of the disabled can function without aid/ appliances, while 20.9% cannot function even with aid and appliance and another 21.3% can take self-care with the help of aid and appliance. Significantly 6.3% of the disabled have neither tried nor have access to aids and appliance and hence cannot take self-care in case of urban areas. Thus as compared to the national average aids and appliances have been provided to a majority of the disabled person in Delhi.
• As expected less proportion of illiterates were found among the disabled persons in Delhi as compared to the national average, as only about 24% disabled persons were illiterate in Delhi. But surprisingly contrary to the expectations illiteracy rate among the disabled was 14.8% in rural areas and 27.8% in urban areas. This could be attributed to the presence of disabled person in slum colonies, who have migrated from rural areas and their families push the disabled children for begging and other low profile jobs. Even among the disabled literates 30% have education up to primary level, while 18% and 27% disabled persons were educated up to middle and secondary and above secondary level respectively. Thus in spite of propagation of inclusive education for disabled in the normal schools and availability of a large number of institutional services through NGOs and other governmental organizations for education of disabled persons, the educational levels for disabled persons in Delhi are still poor and need immediate support and strengthening.
• Only 9.9% disabled population had attended vocational training in Delhi state in 2002. Even among the disabled persons who received the vocational training, the nature of training received was in non-engineering skills, which fetch lower profile jobs and have lower income generation prospects. Thus majority of them lacked earning capacity through the training provided to them. Only 1.2% disabled persons had received vocational training in engineering skills. Thus the position of vocational training even in Delhi the capital city with numbers of government and non-government institutions for disabled persons is pathetic and needs immediate attention of policy makers. The PWD-Act 1995 has not changed the scenario of job opportunities for the disabled inspite of reservations.
• A number of voluntary organizations, NGOs and government organizations are providing technical training for developing capacities of human resources to attend the needs and requirements of the disabled persons in Delhi. These organizations also provide educational, referral, healthcare, vocational and rehabilitation support in Delhi. Thirty-six NGOs in Delhi were provided financial assistance during 2001-02. A total of 52.7 million Rupees, accounting 8.67% of the total support amount for the country under this scheme were disbursed to the NGOs for the voluntary action support to disabled persons during 2001-02. 11 Government Organizations and NGOs were supported and 24.21 million rupees were provided to government organizations and NGOs to support the purchase of aids and appliance and other fitments for the physically and mentally impaired persons in Delhi. Several concessions have also been provided by Delhi government in terms of educational reservation, job reservation in C and D groups, preferences for allotment of land and houses etc;
• The analysis of field survey data collected from 83 surveyed NGOs and government organisations has revealed that majority of the NGOs/ organizations are providing special education for the impaired children only up to primary level. However no effort is being made to continue their education for higher-level education. Hence their retention rates are very low. A significant proportion of NGOs and other organizations are also providing vocational training mostly in tailoring and other low profile jobs. The skills imparted do not provide any viable source of income to the impaired person. Counselling and guidance for seeking support through the existing concessions and services from government schemes is provided by only 15% NGOs. Very few NGOs and other organizations are supporting quality skill development and self-employment generation programmes, which is the main requirement of the impaired persons. The Out Patient Department (OPD) for healthcare is also provided by very few NGOs and other government organizations. Only about 10% NGOs and other organizations provide aids and appliances to the impaired persons. These aids and appliances have been of great help in solving their basic handicaps especially for low vision and locomotor disability groups.
• Thus the activities provided by the NGOs are not sufficient to alleviate their dependence on others. There is a need to extend schemes of healthcare, supply of aids and appliance and appropriate skill development programme for the impaired persons. Self-employment generating vocations are required to make impaired persons economically independent and provide them equal opportunities for becoming productive part of the society. Similarly impaired persons need to be provided higher education programmes through inclusive education system, so that the reservations provided in the PWD-Act 1995 are realized in its true letter and spirit. Availability of residential homes / hostels in the education institution for the impaired persons is minimal in view of the unfriendly accessible transport system to transport them for education purposes.
• The infrastructure and quality of services provided by the surveyed organizations depicts building infrastructure and space was not appropriate to provide effective services to the disabled persons. Healthcare support was provided only by few organizations.
• The nature of educational quality provided by the NGOs and other organizations was not up to mark, as 22% organizations were rated poorly in terms of education quality. However a significant proportion of NGOs and other organizations were providing good or satisfactory quality of education up to primary level.
• Vocational training component was inappropriate and not conducive to provide self-employment opportunities especially for earning decent income for self-sustenance. Most of the vocational training imparted was of low profile and basic, where beneficiaries had to face tough competitions from other population groups. Even marketing opportunities for products produced by the beneficiaries were not available. The organizations expressed their inability to provide quality skill training, as equipments were neither sufficient nor qualitative to impart quality skills. Lack of funds was major cause for not acquiring quality equipments. About 30% NGOs and other organizations had no equipments to provide training or healthcare support. Hence majority of them were engaged in providing counselling, referral services and guidance to the beneficiaries.

Recommendations

The recommendations derived from the in depth field survey and analysis of the information collected through literature survey, deliberation of the seminar and other study material are spelled in terms of enabling social, cultural and economic environment, strengthening government's pro-active policies, healthcare, education, vocational training, employment opportunities and other referral and rehabilitation services.

• Enabling social, cultural and economic Environment:
  • Establish responsibility on the society to make adjustments for disabled people so that they overcome various practical, psychological and social hurdles created by their disability.
  • Provisions to ensure equal opportunities without discrimination to all disabled people in Employment and protection of rights and full participation of disabled people in mainstream activities of the society.
  • Responsibility to prevent disabilities, provision of medical care, education, training, employment and rehabilitation of persons with disabilities.
  • Creating barrier-free environment for them, remove any discrimination against them which prevents them from sharing the development benefits, counteract any abuse or exploitation, lay down strategies for comprehensive development of programmes and services and for equalization of opportunities.
  • Collective efforts must be made by the entire society to integrate disabled with society for social contacts and participation in leisure and recreational activities.
• Strengthening Government's pro-active policies:
  • Government of India must undertake revision for identification of job list for disabled population for 3% reservation in government and PSUs, keeping in view the spirit of elimination of negative jobs for disabled rather than identifying positive jobs for disabled. The Committee for job identification list should include people from all walks of life including the disabled and pragmatic approach must be adopted for identifying job list.
  • More categories of disability must be included in the Act for provision of reservation benefits especially mentally disabled, autism, hemophilia and Alzheimer's disease etc.
  • The Disability Act 1995 and its Rules 1996 must be translated into all regional languages, so that its various provisions, benefits, etc. become widely known.
  • Coverage in programmes must be increased in the electronic and print media, which promote positive attitude towards persons with disability.
  • Dissemination of information through media. Press and other methods regarding the government schemes and concessions provided for disabled persons.
• Healthcare
  • Establishment of Child Guidance Centers, to develop community understanding and support for children.
  • Free OPD facilities at all major government and private hospitals for disabled persons.
  • Supply of free aids and appliances after appropriate medical check-up in all government and private hospitals.
  • Supply of free medicines for disabled persons in all major hospitals.
  • Improved equipments and professional manpower in centers for comprehensive diagnostic and therapeutic services to disabled especially children.
  • Diagnostic and therapeutic services to children with developmental, socio-emotional, behavioral, learning, hearing, speech and language problems.
  • Early intervention for minor impairments should be made mandatory through hospital services for prevention of these impairments turning into chronic impairment cases later.
• Education
  • Residential facilities in majority of schools for disabled especially for girls for maintaining their retention rates in view of difficulties in travel to schools.
  • Counselors who can provide S.I therapy should be appointed in all schools (government and private) to identify learning disabilities among the school-going children. Curriculum for mentally disabled or learners with disability must be made appropriate and tailor-made to reduce their stress.
  • Develop school-based programme aimed at assisting disadvantaged pupils and to mitigate conditions that hinder their learning.
  • All facilities like readers and translator's services and computerized Braille printing should be made available for blind persons.
  • Remedial free couching after school hours by specialized and trained professionals to make children up to date with other school children.
  • Inclusive education of severely disabled persons should be given only after professionals at pre-primary or up to primary stage give specialized training to them. Discriminatory attitude in the inclusive schools should be eliminated.
  • Developing the potential of children with disabilities through integrated education, cultural and sports activities.
  • Facilities and services should be improved and strengthened for enabling impaired person to continue for higher education, applied research programmes and technical education.
  • Disability should be taught as a separate discipline in the colleges and Universities with an integrated multi-disciplinary approach.
  • Appropriate financial, technical, human resource and infrastructure support should be made available through centre and state funds for education, technical and professional training for children and adults with disabilities throughout the length and breadth of the country. Identification of such target groups should be conducted at micro levels through field surveys. RCI can play vital role in identifying institutes where such training could be imparted to the persons who will attend these disabled persons in schools, NGOs and other welfare centers.
• Equal Opportunities for Employment
  • Regular promotions without positive discrimination to disabled staff in government and PSUs to next grade should be given in time.
  • Immediate adoption of Incentive policy for providing incentives to private sector for promoting employment of disabled. Employment of disabled should be made mandatory for the organizations supported by government funding.
  • Private sector should be encouraged and sensitized to provide equal opportunities without positive discrimination to disabled population through persuasion, awareness and pressure lobby.
  • Government of India should accord priority to poor persons with disabilities in all poverty alleviation programmes.
  • Sheltered employment for severely and profoundly impaired persons should be ensured by NGOs, private sectors as well as government jobs.
• Vocational Skills
  • Increase in the vocational training centers exclusively for the impaired persons. These vocational centers should be manned with professional trainers.
  • Vocational skills should develop capacity building to generate higher income earning capacities. Skills should be provided for manufacturing products having marketing opportunities.
  • Improved technological equipments should be made easily accessible to impaired persons, to improve their efficiency without physical and health discomfort while learning the vocational skills.
  • Easy access of loan at lowest interest rates for disabled especially for women for encouraging self-employment entrepreneurship. Their self-employments schemes must be monitored and sheltered with support from government and civil society agencies. Marketing of the product should be supported by civil society and government organization.
• Barrier-free Accessibility
  • All major public places, educational institutions, parks, railway stations, bus stands, airports, hospitals, hotels should adhere to the building code Act to provide easy and enabling accessibility for the impaired persons.
  • Transport services at concessional rates exclusively for the impaired persons should be strengthened to make easy mobility for travel for impaired persons.
• Rehabilitation Homes
  • Community based rehabilitation programmes should be encouraged for the disabled persons.
  • All homeless impaired persons should be identified and provided free residential homes/ hostels with all facilities minimal living facilities. Pension to these homeless impaired persons should be enhanced.
  • Income support in terms of regular pension to the families whose bread earner is disabled.

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