Disability In India _ Statistical Profile 2011 March Mospi 2g2a3e

   

   

 

Disability in India - A Statistical Profile    

March 2011

Central Statistics Office Ministry of Statistics & Programme Implementation Government of India

Foreword In most parts of the World people with disabilities are subject to multiple deprivations with limited access to basic services, including education, employment, rehabilitation facilities etc. Widespread social stigma plays a major role in hindering their normal social and economic life. However in the last three decades since the International Year of Disability in 1981, there has been a "paradigm shift" in attitudes and approaches to persons with disabilities. Worldwide the movement takes a new height from viewing persons with disabilities as "objects" of charity, medical treatment and social protection to treating them as "subjects" with rights, capable of claiming those rights and making decisions for their lives based on their free and informed consent as active of society. The Asia Pacific Region followed up the UN initiative with two consecutive disability specific regional decade initiatives since 1993 with approximately two-thirds of world’s 600 million disabled people living in this region. It led to the formulation of Biwako Millenium Framework for action towards an inclusive, barrier free and rights-based society for persons with disabilities and its supplement, the Biwako Plus Five for further efforts in this regard. In accordance with this convention, Governments are expected to enhance their national capacities in data collection and analysis of disability statistics besides other policy initiatives. The Washington Group on Disability Statistics was formed by United Nations Statistics Division in 2001 to allow the representatives from national statistical agencies of various countries to come together and address selected problems in statistical methods in compiling Disability Statistics. However, there has been a major difference between the developed and the developing countries in understanding the disability types and formulation of their measures. In economically developed countries these have been conceived in keeping with the greater scope of using measuring devices during disability surveys/ censuses or in the istrative records of the medical facility centres. On the other hand such advanced procedures are not feasible in developing countries for getting accurate measure of various disability related parameters. For this very reason, India, like most of the developing countries, could not adopt the International Classification of Functioning, Disability and Health framework for identification and measurement of disability types. In these countries disability statistics is essentially based on the informants’ response to the simple, easily comprehensible disability questionnaire and thus can capture only the most severe cases. This is reflected in the wide divergence in the estimates of prevalence of disability of the developed and the developing countries. In India the official statistics collected through both Population Censuses and the nationwide sample surveys put an estimate of around 2% prevalence of disability as against nearly 20% in countries like Australia and New Zealand in the Asia Pacific region. This publication has contextualized the analysis of existing official data on disability with reference to the policy framework and the embedded principles of social justice followed in the country at present.

(T. C. A. Anant) Secretary, Ministry of Statistics & Programme Implementation iii  

Preface

In India, the enactment of the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 is a signal achievement of its disability movement. With increasing awareness of disability-based discrimination, explicit legal safeguards and major international commitments as a signatory of United Nations Convention on the Rights of Persons with Disabilities (2006), India is attempting a multi-faceted approach to maximise the participation of these differently abled persons in the socio-economic progress of the country. In order to work towards an inclusive, barrier free society through raising awareness and policy actions, there is a need to have comprehensive reliable statistics on people with disability and their socioeconomic conditions. In India, the major sources of statistics on disability are the decadal Population Censuses and the regular large scale sample surveys on disability conducted by National Sample Survey Organisation (NSSO). Based primarily on the findings of the latest Population Census (2001) and NSS Survey on Disability (2002), this statistical profile of the disabled persons in India along with discussion on relevant national and international issues makes the publication a comprehensive documentation on the subject. It is expected to be a unique guide in analysing the issues of concern for deciding on the nature and locales of necessary policy interventions. The detail discussion on the disability statistics in India available through multiple sources brings about the issue of variation in the estimates of disability from different official sources due to differences in concepts, definitions, methodology, type of questions etc. Thus one can find variations in the estimates of prevalence of various types of disability as obtained from NSSO 2002 and Census 2001 mainly due to different definitions used by these two agencies and hence leading to different coverage of the population. A Technical Advisory Committee (TAC) on Disability Statistics was constituted by the Ministry of Statistics & Programme Implementation in the year 2005 to review the conceptual framework and definition for the measurement of disability. The Committee deliberated on the issue in consultation with the various stakeholders and came up with standardized definition and questionnaire for collection of information on disability. However, subsequent progressive changes are yet to be reflected as the new Population Census 2011 is presently under way. I wish to place on record my sincere appreciation for the dedicated effort put in by the team of officers led by Smt. S.Jeyalakshmi, Additional Director General, Social Statistics Division of my office in bringing out this publication.

(S.K.Das) Director General, Central Statistics Office

v  

Officers of Social Statistics Division, Central Statistics Office, Associated with the Publication

Smt. S. Jeyalakshmi Additional Director General

Shri S. Chakrabarti Deputy Director General

Smt. Nivedita Gupta Director

vi  

CONTENTS Chapter no. Topic

Page no.

Snapshot of Disability Statistics

viii - ix

Abbreviations

x

1.

Introduction

A1 – A9

2.

Overview of Statistical Evidences on Disability

B1 – B5

3.

Major Concepts and Definitions

C1 – C12

4.

Dimension of Disability in India

D1 – D18

5.

Nature and Causes of Different Types of Disability

E1 – E15

6.

Socio-economic Profile of Disabled Persons

F1 – F22

7.

International Scenario

G1 – G7

8.

Government Initiatives for Redressal of Disability in India

H1 – H8

State-wise Tables and Maps on Disability

S1 – S11

Appendix-I

Appendix-II Major References State-wise Tables and Maps on Disability Table S1: Total Number (in 000) of Disabled Persons in States/UTs in India for each Population Category: Population Census 2001 Table S2: Total Number (in thousands) of Disabled Persons in States/ UTs in India and their Percentage Distribution by Type of Disability: Population Census 2001 Table S3: Number of Totally Disabled and their % distribution by type of disability in states/UTs of India in 1981 Population Census 1981 Table S4: Percentage of disabled persons in the population of each State/UT: NSS Survey on Disability 2002 Table S5: Prevalence of different types of disability per 100,000 persons in each state/UT : NSS Survey on Disability 2002 Table S6: Percentage distribution of disabled persons of age 5 years and above by level of general education for each state/UT: NSS Survey on Disability 2002 Page S7 to S11: Maps depicting prevalence of various types of disability in the states of India based on NSSO survey (2002) findings   vii   

Snapshot of Disability Statistics

Item of information

Census 2001

NSS Survey 2002

Proportion of disabled persons in population 2.1%

1.8%

21 million

18.5 million

Estimated size of disabled population

Sex ratio among the disabled (no. of females per 1000 males) 738

698

Location of the disabled persons Rural: 75% Urban: 25% Decomposition of disabled population by type of disability 49% in seeing 7% in speech 6% in hearing 28% in movement 10% mental Decomposition of disabled population by age-group More than 50% have age less than 30 and 25% were of age 50 or more

Rural: 76% Urban: 24%

15% in seeing 12% in speech 17% in hearing 57% in movement 11% mental

44% have age less than 30 and 35% were of age 50 or more

Literacy and completed educational level of disabled population 51% not literate, 55% not literate, 26% literate up to primary 25% literate up to primary 6% completed middle level 11% completed middle level 13% secondary level or above 9% secondary level or above Percentage of disabled children attending schools In age-group 6-10 years: 56% (rural) & 64%(urban) In age-group 11-14 years: 64%(rural) & 69%(urban)

In age-group 5-18 years: 48% (rural) & 55% (urban)

viii

Item of information

Census 2001

NSS Survey 2002

Employment status of disabled population Among males: 55% main workers, 9% marginal & 36% non-workers.

Among females: 19% main worker, 13% marginal & 68% non-workers.

Among males: 36% employed, 1% unemployed & 63% out of labour force Among females: 10% employed 0.3% unemployed & 89% out of labour force.

Level of Living of households reporting disability

-

Of households reporting disability of one or more of its 60% in rural areas and more than 25% in urban areas had monthly per capita consumption expenditure of Rs. 300.

Extent of disability 60% could take self-care without aid/appliance; -

17% could take self-care only with aid/appliance; 9% had not tried appliance; 13% could not take self-care even with the help of aid/appliance.

ix

 

Abbreviations

BMF

Biwako Millennium Framework

DISTAT

United Nations Disability Statistics Database

ESCAP

Economic and Social Commission for Asia and the Pacific

ICD-10

International Statistical Classification of Diseases and Related Health Problems

ICF

International Classification of Functioning, Disability and Health

ICIDH

International Classification of Impairments, Disabilities, and Handicaps

MoSPI

Ministry of Statistics & Programme Implementation, Government of India

MSJE

Ministry of Social Justice & Empowerment, Government of India

NSSO

National Sample Survey Organisation (now National Sample Survey Office)

PWD

Persons with Disabilities

PWD Act

Persons with Disabilities (Equal opportunities, Protection of Rights and Full Participation) Act 1995

SAARC

South Asian Association for Regional Cooperation

SHO

Self-help organizations of persons with disabilities

TAC

Technical Advisory Committee on Disability Statistics

UNCRPD

United Nations Convention on the Rights of Persons with Disabilities (2006)

UNSR

United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities

WHO

World Health Organisation

WHO-FIC

WHO Family of International Classifications

 

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Chapter 1 Introduction

“Science may have found a cure for most evils; but it has found no remedy for the worst of them all the apathy of human beings." - Helen Keller 1.1 What is Disability? As defined by the World Health Organization Disability “is an umbrella term, covering impairments, activity limitations, and participation restrictions. Impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives." The Convention on the Rights of Persons with Disabilities (2006), the first legally binding disability specific human rights convention, adopted by the United Nations gives two descriptions of disability. The Preamble to the Convention states that “Disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others.” Again it emphasizes that “Persons with disabilities include those who have long term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” Both the expressions reflect a shift from a medical model to social model of disability. In the medical model, individuals with certain physical, intellectual, psychological and mental impairments are taken as disabled. According to this, the disability lies in the individual as it is equated with restrictions of activity with the burden of adjusting with environment through cures, treatment and rehabilitation. In contrast in the social model the focus is on the society, which imposes undue restrictions on the behaviour of persons with impairment. In this, disability does not lie in individuals, but in the interaction between individuals and society. It advocates that persons with disabilities are right holders and are entitled to strive for the removal of institutional, physical, informational and attitudinal barriers in society. The WHO estimated that more than six hundred million people across the globe live with disabilities of various types due to chronic diseases, injuries, violence, infectious diseases, malnutrition, and other causes related to poverty. People with disabilities are subject to multiple deprivations with limited access to basic services, including education, employment, rehabilitation facilities etc. Widespread social stigma plays a major role in hindering their normal social and economic life. To work towards an inclusive, barrier free

A1

society through raising awareness and policy actions, there is a need to have comprehensive reliable statistics on people with disability and their socio-economic conditions. 1.2 Disability in India While estimates vary, at the turn of the new millennium about 21 million people in India were found to have disability as per the official statistics. These included persons with visual, hearing speech, locomotor or mental disabilities, who constituted about 2 percent of the population. However, some sources claim that the magnitude in actuality is more with at least 5 per cent of population suffering from one disability or other and the official statistics ing for only the most severe ones. By and large, people with disability are further disabled through unequal treatment and denial of basic rights by the broader society. The voiceless disabled people are inseparable part of India’s growing population of marginal, weaker and vulnerable sections of society. The roles and responsibilities of the Government of India are clearly identified in laws but there is a need to study the gap between the law and the practice. This report aims at presenting a statistical profile of disability in India, especially in the new millennium. 1.3 Constitutional Provisions on Disability in India Dignity of the individual is a fundamental notion behind all the fundamental rights guaranteed under part III of the Constitution of India. The Preamble to the Constitution of India & Part III of the Constitution imposes a negative obligation on the part of the state, not to restrain the liberties and rights guaranteed under the same part. Further the State has been directed under the various provisions of the constitution to extend similar treatment to all persons. Article 41 declares that, the 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. Article 46 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. Indian Constitution while distributing legislative powers between the Centre and States kept the disability issue in the State list. The Parliament of India gained competence to legislate on disability issues with the g of the Proclamation of Equality and Full Participation of People with Disabilities in Asian and Pacific Region. Article 249 of the Constitution empowers the Parliament to legislate on any subject falling in any list in order to fulfill its international obligations. Being a signatory to a number of conventions, with a view to implement the Proclamation, the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 was enacted with effect from 1st January 1996. The formal recognition of discrimination on grounds of disability is a recent phenomenon and laws enacted even twenty years ago generally did not include disability in the list of prohibited discriminations. For instance, the Constitution in Articles 15 and 16 prohibits discrimination in the matter of employment and access to public facilities on grounds of religion, race, caste, sex and place of birth, but is silent on disability. A2

In fact, the service rules until 1995 prevented entry of persons with disabilities in higher grades of service. These rules gave the employer the authority to force premature retirement in public interest and often employees who acquired disability during service were either forced out of job or got their rank reduced. In most cases their opportunity for career enhancement was suspended forever. With increasing awareness of disability-based discrimination, explicit legal safeguards have now been put in place. The enactment of the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 is a signal achievement of the Indian disability movement. Preamble to this Act clearly delineates its objective of promoting and ensuring equality and full participation of persons with disabilities. The Act aims to protect and promote economic and social rights of people with disabilities. Though the words disability has not been defined under the Act, but it covers seven disabilities under section 2(i) of the Act - blindness; low vision; leprosy-cured; hearing impairment; loco motor disability, mental retardation, mental illness etc. 1.4 Acts on Disability In our Indian Constitution several Articles and Clauses provide ample opportunities for the development of legal instruments to protect the rights of the disabled people. The first major legal advancement for the protection of the rights of the disabled people after the constitutional guarantee took its shape as the Rehabilitation Council of India Act, 1992 and it came into force on 31st July 1993. The Persons with Disabilities (Equal Opportunities, Protection of Rights & Full Participation) Act, 1995, came into force after a decade old lobbying by the activists working for the rights of the disabled. This Act classifies the categories of the disabled and further identifies the duties of the Government of India, State Governments and local istration towards the welfare of the disabled people. The Mental Health Act, 1987 This was an Act to consolidate and amend the law relating to the treatment and care of mentally ill persons, to make better provision with respect to their properly and affairs and for matters connected therewith or incidental thereto. The Rehabilitation Council of India Act, 1992: The Act was created to provide for the constitution of the Rehabilitation Council of India for regulating training of the Rehabilitation Professional and maintaining of a Central Rehabilitation and for matters related to these issues.   Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 : The enactment of the Persons with Disabilities (Equal opportunities, Protection of Rights and Full Participation) Act 1995 (referred to as persons with Disability Act) is guided by the philosophy of A3

empowering persons with disabilities and their associates. The endeavour of the Act has been to introduce an instrument for promoting equality and participation of persons with disability on the one hand, and eliminating discriminations of all kinds, on the other. The Act aims to protect and promote economic and social rights of people with disabilities. The Act covers seven disabilities. The criteria for classification of each disability are embodied in a biomedical model. Section 2(t) of the Act proclaims that a person with disability means ‘a person suffering from not less than forty percent of any disability as certified by a medical authority.’ The disabilities that have been listed in Section 2 include blindness, low vision, hearing impairment, locomotor disability or cerebral palsy, mental retardation, mental illness and persons cured of leprosy. In addition, autism and multiple disabilities have been covered under the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999. The Act spells out responsibilities of the Government at all levels including establishments under its control. It lays down specific measures for the development of services and programmes for equalising opportunities for the enjoyment of right to education, work, housing, mobility and public assistance in case of severe disability and unemployment. To execute the mandated responsibilities, a Central Co-ordination Committee and State Co-ordination Committees representing major development ministries, of Parliament and disability NGOs and having a woman with disability as a member have been envisaged in a multi-sector model. Furthermore, the institution of Chief Commissioner in the Centre and Commissioner for Persons with Disabilities in States has been proposed. Their mandate is to redress individual grievances, provide safeguards to the rights of persons with disabilities, monitor implementation of disability related laws, rules and regulations, and oversee utilisation of budget allocated on disability. These quasi-judicial bodies are vested with the powers of a civil court. The PWD Act has an exclusive chapter entitled Non-Discrimination. Sections 45, 46 and 47 of this chapter prohibit discrimination on the basis of disability in the matter of public employment and in access to public facilities. It is another thing that corresponding reforms in service rules, building codes and motor vehicle standards have been extremely slow. Consequently, disability litigation is on the rise but the redeeming feature of the current scenario is efficient disposal of disability discrimination cases both by courts and quasijudicial bodies. This historic legislation is a corner stone of evolution of jurisprudence on the rights of persons with disabilities in India. As a result, disability concerns have come into sharp focus. However, within a period of ten years of enforcement of this Act its weaknesses have also surfaced in the absence of a powerful implementing instrumentality. Unlike usual indifference the government soon realised these weaknesses and acceded to the demand of the disability movement for overall review of the Act. Towards this end a committee was constituted which harmonised views of the disability sector and relevant bodies in its comprehensive report.

A4

The National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999: The Government has also introduced a National Trust for the Welfare of Persons with Mental Retardation and Cerebral Palsy Bill, 1995. The trust aims to provide total care to persons with mental retardation and cerebral palsy and also manage the properties bequeathed to the Trust. As certain groups among the disabled are more vulnerable than others, a special enactment for the protection of such persons, their property and well-being was felt necessary. The enactment of the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999 (referred to as the National Trust Act) aims to fulfill a common demand of families seeking reliable arrangement for their severely disabled wards. The specific objectives of the Act are: •

To enable and empower persons with disabilities to live as independently and as fully as possible within and as close to the community to which they belong;

•

To promote measures for the care and protection of persons with disabilities in the event of death of their parent or guardian; and

•

To extend to ed organisations to provide need based services during the period of crisis in the family of disabled covered under this Act.

1.5 Framework for Disability Statistics The Disability Division in the Ministry of Social Justice & Empowerment, Government of India, through its programmes and policy formulations facilitates empowerment of the persons with disabilities, including persons with visual, hearing, speech, locomotor and mental disabilities. They run a few schemes for disabled persons and released the National Policy for Persons with Disabilities in the year 2006. However, there are inherent challenges in the implementation for MSJE as the nodal agency since disability has a multi-sectoral implication. For example, for early detection of disability or for special education needs of the disabled children Ministry of Health & Family Welfare and the Ministry of Human Resources Development together with Ministry of Women and Child Development are the appropriate lead agencies. To address this issue, the PWD Act mandates central and state level Coordination and Executive Committees as key institutions in development of disability policy. Disability Statistics in India are captured through decennial Population Censuses and periodic dedicated National Sample Surveys conducted by Ministry of Home Affairs and Ministry of Statistics & Programme Implementation respectively. International Classification of Functioning, Disability and Health (ICF) has a comprehensive classification of disability which is found to be extremely difficult to canvass in census or surveys, particularly in developing countries like those in the SAARC. It was therefore, felt necessary that an appropriate survey framework based on feasible concepts and definitions and classification of disability conditions is adopted in consultation A5

with stakeeholders in vaarious fields inncluding mediical, legal, social justice annd statistics. Towards T this end, e a frameworrk, considerinng inter-alia the ICF for collecting sttatistics on diisability was developed by b the Ministry of o Social Justicce and Empow werment. Thhe frameworkk had been fielld-tested whille in the meann time India propposed to develop a framework for disabiility statistics in keeping wiith the same to t be developeed for the SAAR RC region coountries throough SAARC C-STAT mechhanism. Accoordingly, in the t SAARC-STAT meeting held h in Dhakaa, Bangladesh in April 2008 it was decided to constiitute an Inforrmal Virtual Group G under the Chairmanship of Pakistan to collect infformation on existing practtices and definnitions follow wed by the Membber States on collection c of data d on disabillity. In India thhe collection of o statistics onn disability likke collection of statistics onn other socio-economic suubjects by Ministrry of Statisticss & Programm me Implemenntation is goveerned by the Collection C of Statistics Act. The Act has beeen amended and the Act cuurrently in force is Collecttion of Statistics Act, 2008 1.6 Interrnational Claassification of Function ning, Disability and Heaalth (ICF) ICF is a classification c of o health andd health relateed domains thhat describe body b functionns and structuures, activities and participaation. The doomains are claassified from body, individdual and sociietal perspecttives. Since an inndividual's funnctioning andd disability occcurs in a conteext, ICF also includes i a listt of environmental factors. IC CF is useful too understand and a measure health h outcom mes. It can be used in cliniccal settings, health services or surveys at thhe individual or populationn level. Thus ICF complem ments ICD-10, the International Statistical Classificationn of Diseases and a Related Health H Problem ms and therefoore is lookingg beyond morttality and diseaase. After niine years off internationaal revision efforts e coordiinated by thhe World Health Organizattion (WHO),, the Worldd Health Asseembly on May M 22, 20011, approved the International Classificattion of Functiioning, Disability and Heaalth and its abbbreviation off "ICF." This classificationn was first creatted in 1980 (and ( then callled the Interrnational Classsification of Impairments,, Disabilities, and Handicapss, or ICIDH)) by WHO to provide a unifying fram mework for classifying c thee consequencees of disease. The ICF classification c complements c WHO’s Interrnational Classifification of Disseases-10th Revvision (ICD), which w contains information i on o diagnosis and a health coondition, but not on functtional status. The ICD andd ICF constitutee the core classsifications in the WHO Faamily of Internnational Classsifications (WHO-FIC). Thhe ICF is structurred around thee following brroad componeents: Body fuunctions and structure s Activitties (related too tasks and acttions by an inddividual) and participation (involvementt in a life situaation) Additioonal informatiion on severitty and environnmental factorrs Functioninng and disabillity are viewedd as a complexx interaction between the health h conditiion of the individual and the conteextual factors of the enviroonment as welll as personal factors. The picture p produced by this com mbination of factors f and diimensions is of o "the person in his or her world." The classification treats t these dimensions as inteeractive and dynamic d ratheer than linear or o static. It alllows for an asssessment of the t A6

degree of disability, although it is not a measurement instrument. It is applicable to all people, whatever their health condition. The language of the ICF is neutral as to etiology, placing the emphasis on function rather than condition or disease. It also is carefully designed to be relevant across cultures as well as age groups and genders, making it highly appropriate for heterogeneous populations. ICF has two parts, each with two components: Part1: Functioning and Disability (a) Body functions and Structures (b) Activities and Participation Part 2: Contextual factors (a) Environmental factors (b) Personal factors These components are denoted by prefixes in each code. •

b for body functions

•

s for body structures

•

d for activity and participation

•

e for environmental factors

The letters b,s,d.e are followed by a numeric code that starts with the chapter number (one digit) followed by the second level (2 digits) and the third and the fourth level (one digit each). b2

sensory functions and pain

first level item

b210

seeing function

second level item

b2102

quality of vision

third level item

b21022

contrast and sensitivity

fourth level item

Further qualifiers (1 digit) are added after decimal point to denote the extent or magnitude of impairment: xxxxxx.0 – No impairment, xxxxxx.1 – mild impairment etc., the qualifier going up to ‘9’. In some cases there are second qualifier also which are denoted by integers 0 to 9 in second place after decimal point. The number of qualifiers and what they represent are specific to the components b, s, d and e. Eg. b21022.1 means mild impairment in contrast and sensitivity of visions. 1.7 Sources of Disability Statistics In any society estimating reasonably accurately the population suffering from physical or mental infirmities is always a challenging task. In the absence of a complete and perfect istrative statistics, recourse is A7

taken through surveys and censuses in spite of their inherent limitations in netting rare personal characteristics. The Persons with Disabilities (Equal Opportunities, protection of Rights and Full Participation) Act which came into force in 1995, imposes specific obligation on the government to undertake surveys, investigation and research concerning causes of disability. As already discussed in India, the major sources of statistics on disability are the decadal Population Censuses and the regular large scale sample surveys on disability conducted by National Sample Survey Organisation (NSSO). i) Population Census: The history of collection of data on disability/ infirmity dates back to the inception of modern Indian Census in 1872. The questionnaire of the 1872 Census included questions not only on physically and mentally infirm but also persons affected by leprosy. Collection of information on infirmities in each of the successive decadal censuses continued till 1931. However, in view of the serious doubts expressed by the then Census Commissioners about the authenticity and quality of data collected on infirm population, the enumeration of physically disabled persons was discontinued during the 1941 Census. It was felt that question on disabled population did not lend themselves to a census enquiry since these did not seem to provide accurate data due to variety of reasons particularly due to the social stigma attached with this characteristic. After a gap of 50 years, a question on disabilities was again canvassed at the 1981 Census. Since 1981 had been proclaimed as the "International Year for the Disabled" it resulted in inclusion of a question on disability during censuses the world over and India was no exception to it. However, the question on only three broad categories of physical disabilities, viz. `Totally Blind', `Totally Dumb' and `Totally Crippled', was canvassed during the House listing Operations of 1981 Census. When the results of 1981 Census were finally available, it was felt that there was considerable under enumeration of physically handicapped persons. The 1981 Census results also ed the views expressed by the earlier Census Commissioners that the enumeration and determination of the physically handicapped and their characteristics were beyond the scope and capacity of Census Operations due to the complexity of the definition of disability and inherent reservations of the population to share this information with the enumerator usually a local government official. The question on disability was not canvassed again at the 1991 Census of India. The question on disability was again incorporated in census of India 2001 under the pressure from the various stakeholders and obligation under PWD Act, 1995, although it was generally felt that it was difficult to collect accurate information on disability during the census enumeration process. Further, the concepts and definitions spelt out in the act were found to be difficult to canvass in the in the absence of expert investigator specifically trained for the purpose. However, considering its advantage of comprehensive coverage of population characteristics and scope to provide estimates at sub-state level the decision to include the question on disability for all the of the households was finally agreed upon.

A8

ii) NSS Surveys on Disability: The National Sample Survey made its first attempt to collect information on the number of physically handicapped in its 15th round survey (July 1959-June 1960). The enquiry was exploratory in nature and was confined to rural areas only. In its 16th round (July 1960-June 1961) the geographical coverage was extended to urban areas. Thereafter the subject was again taken up for nationwide survey in its 24th round(July 1969-June 1970), 28th round (October 1973-June 1974), These surveys (undertaken during 15th, 16th, 24th, and 28th rounds) were intended mainly to get a count of persons in the country who suffered from certain specified physical handicaps. However, the types of physical handicap covered were not always same. For reasons of economy information on physically handicapped was collected in the early rounds in survey schedules meant for other subjects. Therefore, there was very little scope for collecting information on cause, specific nature and other details of physical handicap. NSSO undertook a comprehensive survey on this subject for the first time in the NSS 36th round (JulyDecember 1981) as 1981 was the International Year of the disabled persons. Detailed information relating to magnitude of disability, type of disability, cause, age at onset, type of aid/ appliance used and other socio-economic characteristics was collected in this survey. A decade later, at the request of MSJE, NSSO covered this subject again in its 47th round (July-December 1991), with the same basic framework including concepts, definitions and operational procedures as followed in the 36th round. While the earlier surveys were restricted to only the physically handicapped persons, in the survey conducted since NSS 36th round (1981) an extended definition was used to cover all persons with one or more of the three physical disabilities – visual, communication (i.e. hearing and/ or speech) and locomotor. Also, data on developmental milestones and behavioural pattern of all children of age 5-14 years were collected, regardless of whether they were physically handicapped or not. Again, after a gap of eleven years, the survey on the persons with disabilities was carried out in the 58th round during July-December, 2002. This round also maintained the same definitions and procedures for physical disabilities as were adopted in earlier two rounds. This round, however, extended the coverage by including the mental disability. Along with the particulars of physical and mental disabilities, the socioeconomic characteristics of the disabled persons such as their age, literacy, employment, vocational training etc. were collected. Governing Council (GC) of NSSO through the working groups with National Experts in different medical institutions, eminent professors, academicians and other important s including Ministry of Social Justice and Empowerment, finalised the questionnaire, sampling design, tabulation plan etc. for the survey.

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Chapter 2 Overview of Statistical Evidences on Disability

2.1 Size of Disabled Population At the turn of the new millennium about 21 million people in India were found to have disability as per official estimate obtained from the Population Census 2001. These included persons with visual, hearing speech, locomotor or mental disabilities, who constituted about 2 percent of the population. On the other hand, NSSO survey on Disability (July – December 2002) estimated the disabled population in the country as 18.5 million, who formed about 1.8 percent of the population. Population Census and NSS surveys are the major two sources of official statistics. But the two differ substantially especially in respect of overall estimates of persons with various types of disability and their age distribution, mainly due to differences in the concepts and definitions as also the data collection methodologies. 2.2 Prevalence of Disability: a) As per Population Census 2001, of the persons with disability (PWD), about 75% belonged to rural areas and only 25% were from urban areas. For the population of the country as a whole, 2.13% were found to have one type of disability or the other. In rural India, the prevalence of disability was much higher (2.21%) as compared to that in its urban counterpart (1.93%). Among males, the prevalence of disability (2.37%) was significantly higher than that among females (1.87%). The prevalence rate among SC population (2.23%) was marginally higher as compared to the general population; while among ST population, it was noticeably lower (1.92%). Among the major states of India the prevalence of disability (percentage of disabled in total population) was relatively much higher in J & K (3%), Orissa (2.8%), Kerala (2.7%), Tamil Nadu and H.P. (2.6% each) while it was quite low in Maharashtra (1.6%), Jharkhand, Punjab and Delhi (1.7% each), Karnataka & Andhra Pr.(1.8% each) etc. b) In the NSSO Survey (2002) 8.4% of rural households and 6.1% of urban household reported disability of one or more of their in the survey. More than 90% of these households reported disability of only one member, 6 to 8% in the rural areas and nearly 10% of households in the urban areas reported to have two disabled . Only in 1% or less of the households, three or more disabled could be found in both the sectors. For the population of the country as a whole, 1.8% was found to have at least one type of disability. Again out of them 10.63 per cent suffered from more than one type of the disabilities. In rural India, the prevalence of disability was more (1.85%) as compared to its urban counterpart (1.5%). Further, among males, the proportion of disabled (2%) was significantly higher than that among females (1.5%). Among the disabled persons, 7% were ST, 22% were SC, 41% belonged to OBC and 30% were categorized as ‘others’. The proportion of disabled persons in the population was found to be relatively high (more than 2%) in H.P (2.6%), Orissa (2.5%) Kerala (2.2%), and Punjab (2%) and significantly low in Delhi (0.6%), Assam (1.0%), B1   

Jharkhand (1.2%), Rajasthan (1.5%) etc. In almost half of the states the prevalence was in the range of 1.7% to 1.8%. The proportion of persons with any disability was found to be increasing steadily with age from about 0.5% for age less than 5 to more than 1.7% till age 20. It remains more or less same almost till the age 50. Thereafter, it increases rapidly with age to about 3% for age-group 55-59 and more than 6% after age 60 years. 2.3 Composition of Disabled Population: a) As per Census (2001) findings, where not more than one type of disability was recorded for each PWD, about half of them were found to have visual disability, more than a-fourth had movement disability, about 10% were having mental disability, 7% had speech disability and 6% were with hearing disability. The proportions vary marginally across different sets of population categories. More than half of the disabled were of age less than 30 and only onefourth of disabled persons were of age 50 or more. b) In the NSSO (2002) survey ‘a person with restrictions or lack of abilities to perform an activity in the manner or within the range considered normal for a human being was considered disabled’ and information on one or more types of disability were collected from each person reported to have disability. The survey found out Loco motor Disability to be the most prevalent type with more than 1% of population suffering from it. This was followed by hearing disability, then visual disability and lastly speech and mental disability, prevalence of each of which was relatively low (with less than 0.3% of population suffering from each of these disabilities). 2.4 Literacy of the Disabled Persons: a)

In the Population Census (2001) majority of disabled persons were found to be not literate – only 37% of disabled females and 58% of disabled males were reported to be literate. Only 3% were of level graduate and above and another 10% were of level secondary or higher secondary. Wide gap in literacy among disabled existed in the states from 37% in Bihar to 67% in Kerala with almost half of the states having majority of their disabled persons not literate. Among disabled children, 58% of age 6-10 years and 63% of age 11-14 years of were found to be attending schools, as against 69% and 75% respectively in the general population.

b) NSSO survey estimated that about 55% of the persons having any disability were not literate, 25% were literate up to primary level, 11% completed middle level and another 9% were of secondary level and above. 58% of disabled in the rural and 39% of disabled in urban (age 7 years and above) were not literate, another 35% in rural and 43% in urban were literate but below secondary and only 7% rural disabled and 18% urban disabled persons were of educational level secondary and above. Among the major States, the highest percentage of illiterates among disabled persons was found in Bihar (66%), Orissa and Andhra Pradesh (64% in both the states). The proportion of not-literate persons among the disabled of age 5 years and above was least in Kerala (33%). B2   

The proportion of disabled children currently enrolled was found to be low (less than 50%) in general, and among mentally disabled and blind children in particular in both rural and urban sector. Proportion of disabled females (age 5-18 years) enrolled in either ordinary or special schools were invariably lower than that of their male counterpart. Regarding reason for nonenrolment in special school, 32% identified disability itself as the main reason, another 15% were not aware of special schools and for another 14% parents were not interested. 2.4 Employment of the Disabled Persons: a) In Population Census (2001) more than a-third (36%) of disabled males and more than twothird (68%) of disabled females of age 15 to 59 years were found to be non-workers (not economically active) vis-a-vis only 19% of males and 60% of females as non-workers among general population. Majority of persons with speech or movement disability and almost threefourth of persons with mental deficiencies were non-workers. On the whole 55% of disabled males were main workers, 9% marginal workers and 36% non-workers. Among disabled females the respective percentages were 19% main worker, 13% marginal worker and remaining 68% non-workers. Out of the total disabled non-workers, about 50% of the nonworkers were dependent, more than 20% were students, about 14% were engaged in household duties, 2% were pensioners, 1% of them were beggars, vagrants, etc and 5% were categorized as others. b) The NSSO Survey (2002) estimated oonly 25% of the disabled population as employed, 1% were unemployed and the rest were out of labour force. Among males, 36% were found to be employed while among females only 10% were employed and 89% were out of labour force. More than 90% of the disabled persons with mental retardation or blindness, 85% of persons with mental illness and about 80% of persons with low vision were out of labour force. Nearly 70% of the persons with speech or locomotor disability and about 65% of the persons with hearing disability were also out of labour force. Out of the persons employed, about 13% were self-employed in agriculture, 10% were casual labourers, 5% were self-employed in non-agricultural activities and only 4% (5% for locomotor disability, 3% in case of speech disability and less than 1% for the other types of disability) were regular employees. Among the disabled persons who were out of labour force, 15% attended domestic duties and 5% attended educational institution. In general, nearly 55% of the disabled males working were involved in the primary sector, 17% in secondary sector and 28% in the tertiary sector. Out of the total disabled females, more than 60% were involved in the primary sector, 16% in the secondary sector and 22% in the tertiary sector. 2.5 Marital Status of the Disabled Persons: a) Population Census (2001) found out only 1% of the total disabled persons/males/females were married at age below15 years. In the age-group 15-59 years, about 34% of the total disabled persons were reported to be never married, 60% were married, 5% were widowed and 1% were divorced or separated. About 50% of persons with disability in speech, mental B3   

(most prominent) and movement were never married even after age 15. But in case of disability in seeing and hearing, majority of age 15-59 years were married. b) In NSS Survey, among the disabled males of all age, 47% were reported to be never married, 45% were married, 7% were widowed and 1% got divorced or separated. Among the disabled females, 39% were never married, 31% were married, 28% were widowed and 2% got divorced or separated. More than 90% of the persons with mental retardation never got married. More than 70% of the males faced with speech disability and nearly 70% of the females having disability in hearing were not married. Even in the marriageable age category (15 years and above), almost a-third of disabled males and 22% disabled females remained unmarried. More than 90% of the disabled persons were not living alone, about 5% were living with their spouse and only 3% were living alone. 2.6 Extent of Disability: This information was collected in NSS Survey where it was found that in the year 2002, of the PWD about 60% could take self-care without aid/appliance and another 17% could take selfcare only with aid/appliance and 9% had not tried or aid/appliance or those were not available to them. But 13% of the disabled persons could not take self-care even with the help of aid/appliance. 2.7 Cause of Disability and Age at Onset: Again in the NSS surveys only detail information on cause of disability, age at onset of disability etc. were collected and tabulated separately for each type of disability. In more than 50% cases, mental retardation has been reported to be caused by serious illness or head injury in the childhood. More than 85% of the persons with mental retardation were disabled since birth. The proportion was still higher in the rural areas (90%) as compared to the urban areas (about 70%) and again more for females (90%) than for males (85%). More than 85% of the mentally retarded persons showed a delay in the development of the combination of sitting, walking and talking. Mental illness is more of an old age problem. For nearly 40% cases, the age at onset was 45-49 years and more than 30% acquired mental illness after the age of 60 years Out of the total visually disabled persons, more than 70% were blind (of which 35% had no light perception and more than 35% had light perception but could not count fingers from a distance of 1meter) and nearly 30% suffered from low vision. More than 60% of the persons with blindness and about 70% of persons with low vision acquired disability due to the following three reasons - old age, cataract and other eye diseases. Again, more than two-third of persons with blindness and more than 70% of persons with low vision acquired the disability after the age of 60 years. Among the persons with hearing disability, in more than 30% cases the disability was reported to be profound, another 40% had severe disability, and only 30% had moderate hearing disability. The three major reasons for hearing disability was old age, other illnesses and B4   

ear discharge. Nearly 60% of the persons with hearing disability acquired the disability after the age of 60 years and about 25% acquired it in the age-group 45-49 years. Nearly 50% of the persons with speech disability could not speak and nearly 20% of the speech disabled spoke only in single words. Paralysis, mental illness or retardation and voice disorders were reported, among other common causes, as major causes of speech disability. For more than a-third of the speech disabled persons, the age at onset was after 60 years, about 20% acquired disability in the age-group 45-49 years and more than 35% of speech disabled persons were disabled since birth. About 45% of the locomotor disability was attributed to deformity of limb, more than 20% to dysfunction of ts of limb, another 15% to paralysis, 10% to any other deformity of body and 8% to loss of limbs. Polio and injury other than burns were the two major causes of locomotor disability contributing more than 50% of cases. More than 50% of the persons with locomotor disability acquired it after the age of 60 years, 28% in the age-group 45-49 years and only 5% were disabled since birth. About a third of the persons with locomotor disability used crutches, 11% used callipers, nearly 8% acquired from wheelchair or artificial limbs, 6% used tricycle, 5% had splint and only 1% had spinal brace. 2.7 Level of Living and Type of Assistances Received by the Disabled Persons: In the NSSO Survey information was collected on the average monthly consumer expenditure of the households reporting one or more cases of disability. In both rural and urban areas, about 25% of the households belonging to the lowest MPCE class reported disability although less than 3% of general households belonged to this poorest class. More than 50% of households reporting one or more disabled were below poverty line in both rural and the urban sector. These households were put into disadvantage in respect of both disability and poor level of living. Also the proportion of households reporting disability decreased steadily as one moves up along the higher MPCE classes. In general, about 12% of the disabled persons of age 5 years and above had received some govt. aid or help. The disabled in the urban areas had a higher RGAH (received any Govt. aid/ help) rate as compared to the rural. Out of the total percentage of disabled persons receiving aid from govt., more than 20% received help for aid/ appliance, nearly 10% obtained help for education and 5% for corrective surgery (more so in urban areas). The distribution of disabled males and females receiving any aid or help was nearly the same. Among the different types of disability, a higher proportion of persons with blindness (16%) and locomotor disability (13%) received any govt. aid or help, followed by low vision and speech disability (about 10% each), and finally mental and hearing disability (nearly 5%).

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Chapter 3 Major Concepts and Definitions 3.1 The Background The Convention of Rights of Persons with Disabilities (UNCRPWD:United Nation, 2006 w.e.f. 8 May 2008) and the Biwako Millenium Framework for Action and Biwako Plus Five (ESCAP 2003) reflect a shift from a medical to social model of disability . In the medical model, individuals with certain physical, intellectual, psychological and mental conditions (impairment) are regarded as pathologic or abnormal; it is simply the abnormality conditions themselves that are the cause of all restrictions of activities. According to the medical model, disability lies in the individuals, as it is equated with those restrictions of activity. Faced with the line of thinking, individuals would feel pressured to work on ‘their’ restrictions, bearing the burden of adjusting to their environment through cures, treatment or rehabilitation. In contrast, the social model shifts the focus to the society; undue restrictions on behaviour of persons with impairment are seen to be imposed by: a) dominant social, political, and economics ideologies; b) cultural and religious perceptions regarding persons with disabilities; c) paternalism in social welfare systems; d) discriminations by society; e) the inaccessibility of the environment and information; and f) the lack of appropriate institutional and social arrangements. Thus in this model, disability does not lie in individuals, but in the interactions between individuals and society. In the social model, persons with disabilities are right holders, and are entitled to advocate for the removal of institutional, physical, informational and attitudinal barriers in society. Thus it is a concept based on the consequences of diseases/ infirmity on functional capacity and/ or social participation. It locates the definition of disability at the most basic level of activity/participation in core domains – defined as the ability or inability to carry out basic actions at the level of whole person (i.e. walking, climbing stairs, lifting packages, seeing a friend across the room etc.). 3.2 Indian Context In India different definitions of disability conditions have been introduced for various purposes, essentially following the medical model and, as such, they have been based on various criteria of ascertaining abnormality or pathologic conditions of persons. In absence of a conceptual framework based on the social model in the Indian context, no standardisation for evaluating disability across methods has been achieved. In common parlance, different such as disabled, handicapped, crippled, physically challenged, are used inter-changeably, indicating noticeably the emphasis on pathologic conditions. Persons with Disability Act, 1995: Through the Act is built upon the premise of equal opportunity, protection of rights and full participation, it provides definitions of disabled person following the medical C1

model. According to the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, "Person with disability" means a person suffering from not less than forty per cent of any disability as certified by a medical authority (any hospital or institution, specified for the purposes of this Act by notification by the appropriate Government). As per the act "Disability" means (i) Blindness; (ii) Low vision; (iii) Leprosy-cured; (iv) Hearing impairment; (v) Loco motor disability; (vi) Mental retardation; (vii) Mental illness, which were defined as below. •

"Blindness" refers to a condition where a person suffers from any of the following conditions, (i) Total absence of sight. (ii) Visual acuity not exceeding 6/60 or 20/200 (snellen) in the better eye with correcting lenses; (iii) Limitation of the field of vision subtending an angle of 20 degree or worse;

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"Person with low vision" means a person with impairment of visual functioning even after treatment or standard refractive correction but who uses or is potentially capable of using vision for the planning or execution of a task with appropriate assistive device;

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"Leprosy cured person" means any person who has been cured of leprosy but is suffering from(i) Loss of sensation in hands or feet as well as loss of sensation and paresis in the eye and eye-lid but with no manifest deformity; (ii) Manifest deformity and paresis; but having sufficient mobility in their hands and feet to enable them to engage in normal economic activity; (iii) Extreme physical deformity as well as advanced age which prevents him from undertaking any gainful occupation, and the expression "leprosy cured" shall be construed accordingly;

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"Hearing impairment" means loss of sixty decibels or more in the better ear in the conversational range of' frequencies;

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"Loco motor disability" means disability of the bones, ts muscles leading to substantial restriction of the movement of the limbs or any form of cerebral palsy;

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"Mental retardation" means a condition of arrested or incomplete development of mind of a person which is specially characterized by sub normality of intelligence;

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"Mental illness" means any mental disorder other than mental retardation;

However, these definitions were not found to be useful even for enumerating the disabled population, particularly in Population Census process for a large population like that of India.

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3.3 Definitions adopted for Population Census Census of India 2001 document mentioned "Defining and measuring disability is a complex issue and it is not easy to communicate these concepts during the census process, in which only a limited amount of questioning time is possible to be spent with a household for obtaining detailed information on every individual." With regard to definitions adopted by PWD Act, Census of India stated "the concepts and definitions of disabilities coupled with measuring its extent and its types contained in the PWD Act, 1995 were found to be extremely difficult to canvass even in normal circumstances assuming people had time, were willing and forthcoming to share this information and there was an expert investigator to elicit this information." Census therefore used its own version of definitions of disabilities. Census of India 2001 defined five types of disabilities:- (i) seeing, (ii) speech, (iii) hearing, (iv) movement, and (v) mental. Seeing disability: A person who cannot see at all (has no perception of light) or has blurred vision even with the help of spectacles. A person with proper vision only in one eye was also treated as visually disabled. A person may have blurred vision and had no occasion to test whether her/his eyesight would improve by using spectacles - such persons were treated as visually disabled. Speech disability: A person who is dumb or whose speech is not understood by a listener of normal comprehension and hearing, was considered to have speech disability. Persons who stammer but whose speech is comprehensible were not classified as disabled by speech. Hearing disability: A person who cannot hear at all (deaf), or can hear only loud sounds was considered to have hearing disability. A person who is able to hear using hearing aid, was not considered as disabled under this category. If a person cannot hear through one ear but her/his other ear is functioning normally, she/ he was still considered to have hearing disability. Movement Disability: A person, who lacks limbs or is unable to use the limbs normally, was considered to have movement disability. Absence of a part of a limb like a finger or a toe was not considered as disability. However, absence of all the fingers or toes or a thumb make a person disabled by movement. If any part of the body is deformed, the person was also treated as disabled and covered under this category. A person, who cannot move herself/himself without the aid of another person or without the aid of stick, etc., was treated as disabled. Similarly, a person who is unable to move or lift or pick up any small article placed near her/him was also treated as disabled in movement. A person who may not be able to move normally because of problems of ts like arthritis and has to invariably limp while moving, too was considered to have movement disability. Mental disability: A person who lacks comprehension appropriate to her/his age was categorised as mentally disabled. This would not mean, however, that if a person is not able to comprehend her/his C3

studies appropriate to her/his age and is failing to qualify her/his examination, she/ he was considered mentally disabled. Mentally retarded and insane persons were treated as mentally disabled. A mentally disabled person generally has to depend on her/his family for performing daily routine. In Population Census, if a person suffered from two or more types of disability, only one of them was recorded. In all such cases it was left to the respondent to decide as to under which type of disability the person should be categorised. The definitions, concepts and instructions were designed in such a manner that the question on disability can be canvassed appropriately without hurting the sentiments or feelings of the informant with a view to have good chances of netting the disability characteristics of the population. 3.4 Definitions adopted for NSSO Survey on Disability The NSSO undertook a comprehensive survey of disabled persons for the first time in its 36th round during the second half of 1981, the International Year of the Disabled Persons. After a gap of ten years, a second survey on the disabled was carried out in the 47th round during July-December 1991 at the request of Ministry of Social Welfare, Govt. of India. In these surveys, the objective was to provide the database regarding the incidence and prevalence of disability in the country and the basic framework of these surveys viz., the concepts, definitions and operational procedures were kept the same. Prior to 1981, NSS surveys were restricted to only the physically handicapped persons. Since NSS 36th round (1981) an extended definition was used to cover all persons with one or more of the three physical disabilities – visual, communication (i.e. hearing and/ or speech) and loco-motor. The particulars of disability of the disabled persons, such as, the type of disability, degree of disability, cause, age at onset of disability, type of aid/appliance used, etc. were collected along with some socio-economic characteristics. Also, data on developmental milestones and behavioural pattern of all children of age 5-14 years were collected, regardless of whether they were physically handicapped or not. The third and the latest comprehensive survey on the disabled persons was carried out in the NSS 58th round (July-December 2002), where the coverage was extended to include mental disability also, keeping all other concepts, definitions and procedures for physical disability same as those of the 47th round. The broad definitions adopted for collection of data pertaining to this survey on disability were as follows: Disability: A person with rrestrictions or lack of abilities to perform an activity in the manner or within the range considered normal for a human being was treated as having disability. It excluded illness/injury of recent origin (morbidity) resulting into temporary loss of ability to see, hear, speak or move. The NSS definition of disability was much closer to the social model. However, the scope of the definition was not translated in questionnaire deg in compliance with CRPWD and as a result of that, could not fully capture the population that the core definition meant to cover. Mental disability: Persons who had difficulty in understanding routine instructions, who could not carry out their activities like others of similar age or exhibited behaviours like talking to self, laughing/ crying, staring, violence, fear and suspicion without reason were considered as mentally disabled for the purpose of C4

the survey. The “activities like others of similar age” included activities of communication (speech), self-care (cleaning of teeth, wearing clothes, taking bath, taking food, personal hygiene, etc.), home living (doing some household chores) and social skills. Visual disability: By visual disability it was meant loss or lack of ability to execute tasks requiring adequate visual acuity. For the survey, visually disabled included (a) those who did not have any light perception - both eyes taken together and (b) those who had light perception but could not correctly count fingers of hand (with spectacles/ lenses if he/ she used spectacles/ lenses) from a distance of 3 metres (or 10 feet) in good day light with both eyes open. Night blindness was not considered as visual disability. Hearing disability: This referred to persons’ inability to hear properly. Hearing disability was judged taking into consideration the disability of the better ear. In other words, if one ear of a person was normal and the other ear had total hearing loss, then the person was judged as normal in hearing for the purpose of the survey. Hearing disability was judged without taking into consideration the use of hearing aids (i.e., the position for the person when hearing aid was not used). Persons with hearing disability might be having different degrees of disability, such as profound, severe or moderate. A person was treated as having ‘profound’ hearing disability if he/she could not hear at all or could only hear loud sounds, such as, thunder or understands only gestures. A person was treated as having ‘severe’ hearing disability if he/she could hear only shouted words or could hear only if the speaker was sitting in the front. A person was treated as having ‘moderate’ hearing disability if his/her disability was neither profound nor severe. Such a person would usually ask to repeat the words spoken by the speaker or would like to see the face of the speaker while he/she spoke or would feel difficulty in conducting conversations. Speech disability: This referred to persons’ inability to speak properly. Speech of a person was judged to be disordered if the person's speech was not understood by the listener. Persons with speech disability included those who could not speak, spoke only with limited words or those with loss of voice. It also included those whose speech was not understood due to defects in speech, such as stammering, nasal voice, hoarse voice and discordant voice and articulation defects, etc. Loco-motor disability: A person with - (a) loss or lack of normal ability to execute distinctive activities associated with the movement of self and objects from place to place and (b) physical deformities, other than those involving the hand or leg or both, regardless of whether the same caused loss or lack of normal movement of body – was considered as disabled with loco-motor disability. Thus, persons having locomotor disability included those with (a) loss or absence or inactivity of whole or part of hand or leg or both due to amputation, paralysis, deformity or dysfunction of ts which affected his/her “normal ability to move self or objects” and (b) those with physical deformities in the body (other than limbs), such as, hunch back, deformed spine, etc. Dwarfs and persons with stiff neck of permanent nature who generally did not have difficulty in the normal movement of body and limbs were also treated as disabled.

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In NSS surveys since the data are collected by the non-medical investigators, it is imperative to define disability in a very careful and guarded way to minimize the bias of the investigators and respondents. To minimise these difficulties and to involve feasible and practical concepts and definitions of disability, the experts from the relevant medical disciplines were consulted. Moreover, besides the socio-economic characteristics, information on cause of disability, age at onset, degree of disability, treatment undergone, aids/ appliances acquired etc. was collected for each of the disability separately for the persons suffering from one or multiple types of disability. In the case of loco motor disability, a person suffering from multiple types of loco motor disability was considered to have multiple disabilities. 3.5 Technical Advisory Committee on Disability Statistics A Technical Advisory Committee (TAC) on Disability Statistics was constituted by the Ministry of Statistics & Programme Implementation in the year 2005. The Committee was entrusted with the work to review the conceptual framework and definition for the measurement of disability and to examine the reasons of variations in the estimates of disability as obtained from NSSO 2002 Survey and Census 2001. The Committee deliberated on the various aspects of the disability statistics including reasons for variations in the estimates of disability as available from the two sources of the data. a) Analysis of variation in definitions The Persons with Disability (PWD) Act, defines disability in of extent of impairment of body structure and body function. The context in which the definitions of disability and categories therein are being examined here relates to the classification of person, as disabled or not, by an enumerator who is given a short training in concepts and definitions. Therefore, the definitions under PWD Act need to be converted into definitions, which are simple and tangible from the point of view of the enumerator as well as the respondents. The NSS definition of disabled person i.e. ‘A person with restrictions or lack of abilities to perform an activity in the manner or within the range considered normal for a human being’ seems to be in order provided the deviation from normal manner is defined in a manner suitable to the above context. The above general definition of disability is based on activity limitation in execution of usual task and not the deviation from the accepted standard of biomedical status of the body of a person. This criterion has been used in examining the category-wise definitions and on the appropriateness of a definition. Mental Disability: The definition under PWD Act can serve only as a basis on which practical definition has to be worked out. The definition used under population census limits mental disability to as characterized by sub normality of intelligence and thus, covers only ‘Mental Retardation’ category of the PWD Act. On the other hand, NSS definition covers sub-normality of intelligence (as difficulty in understanding routine instructions) and goes further in an attempt to cover mental disability other than ‘Mental retardation’ by adding other C6

characterization of the behaviours like talking to self, laughing/crying, staring, violence, fear and suspicion without reason. As NSS definition seems to be more comprehensive/ inclusive, although NSS 2002 figure of number of mentally disabled was less than the Census 2001 figure. However, in contrast to other categories of disability these figures obtained from two sources were close to each other. Visual Disability: Except including a person with proper vision only in one eye (Population Census) the definitions of Census and NSS are similar in practical . NSS has used the counting of fingers as practical measure to the blurred vision. Classifying person with proper vision only in one eye as disabled, is not in accordance with the PWD Act. Besides, categorization of a person as disabled is primarily based on activity limitation in execution of usual task in environment relevant to the person and not the deviation from the accepted standard of biomedical status of the body of a person. Inclusion of person with proper vision only in one eye under ‘Visually disabled’ is not in accordance with this criterion. As expected, the Census 2001 figure (10.64 million visually disabled person) is higher than the NSS estimate (2.83 million). The high extent of difference is not justifiable due to inclusion of ‘one eyed’ category only. It may be that many two eyed persons also suffer from low or lack vision in one of the eye due to some internal injury/defect which is not noticed by others from outside. Hearing Disability: Census and NSS definition differ in following respect a) A person with only one ear functioning normally is classified as disabled in Census but not under NSSO survey. b) Under ‘Moderate’ disability NSS includes as disabled a person who would normally ask to repeat the words spoken by the speaker or would like to see the face of the speaker while he/ she spoke or would feel difficulty in conversations. PWD Act does not classify a person as suffering from ‘Hearing Impairment’ if he/ she has one ear functioning normally. Here again Census definition has given undue weightage to the deviation of body structure from the accepted structure. On the other hand NSS definition of ‘Moderate Hearing Disability’ may be considered as covering more than what is required or intended under PWD Act. In spite of that, a Census figure (1.26 million) was much less than the NSS estimates (3.06 million). Besides sampling error, inclusion of moderate category of hearing disabled, inclusion of persons having hearing disability in combination with other disability (like speech disability) under both disability categories, may be other reasons for NSS figure being higher than Census figure. Speech disability The definitions of Census and NSS are similar so far as a person having speech disability is concerned. Census definition is more simple and qualifies the listener also. It may be noticed that the PWD Act does not include speech disability under its purview. The reason for NSS figure being higher may be that some C7

persons have speech disability in combination with other disability which is more pronounced than speech disability. These persons would be listed under that pronounced disability alone in Census but under NSS results the person would also be additionally listed as having speech disability. Locomotor Disability In case of ‘Locomotor disability’ the definition given under PWD Act itself is simple. Both, Census and NSS definitions are in accordance with the definition under the Act except NSS definition includes dwarfs and persons with stiff neck of permanent nature who generally did not have difficulty in the normal movement of body and limbs, as having locomotor disability. Besides sampling errors, inclusion of dwarfs and persons with stiff neck, and inclusion of persons having multiple disabilities under each category may be responsible for the large variation or at least part of the variation. Leprosy cured person Census and NSS definitions do not consider the loss of sensation or deformities in leprosy cured person for the purpose of disability unless it manifests in the type of disabilities defined under Census and NSS. Activity limitation has been the primary determinants in laying down the definition of disability. A close look at different definitions would show that deviation from the accepted standard of the body structure was judged based on this criterion for including or excluding a person under a disability category. Examining the proprietary of excluding the three categories of ‘Leprosy cured person’ from the purview of the disability of Census and NSS it is felt that third category of ‘Leprosy Cured person’ defined under PWD Act may be considered for inclusion in Census and NSS definition of disability, as in this case the person suffers from activity limitation due to social attitude. b) Summary Findings The Committee found that the variations in the estimates of disability as obtained from NSSO 2002 and Census 2001 are mainly due to different definitions used by these two agencies and hence leading to different coverage of the population. It therefore, became a prime objective of the Committee to streamline the various definitions used for only surveys and Population Censuses of India. To finalise the definitions for various disabilities the Technical Advisory Committee consulted specialists from the Hospitals. The report also included the input from the institutes under the Ministry of Social Justice and Empowerment, such as, Ali Yavar Jung National Institute for the Hearing Handicapped, Mumbai, National Trust for the Welfare of Persons with Autism Cerebral Palsy Mental Retardation and Multiple Disabilities, New Delhi and National Institute for the Mentally Handicapped, Secunderabad. It was suggested that the Census being done on a very large scale, it may continue to collect general information about the disabled persons but the definitions may be used as recommended by the Committee. On the other hand, the NSSO has to collect detailed information about the disabled persons by deep probing. As it is very sensitive to ask any person about his disability, uniform core questions need to be included before starting thorough probing questions.

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c) General Criteria for judging a disabled person A person with restrictions or lack of abilities to perform an activity in the manner or within the range considered normal for a human being - this general definition of disability is based on activity limitation in execution of usual task and not the deviation from the accepted standard of biomedical status of the body of a person. This concept is followed in NSSO survey. The Census has recommended that the persons who attended/are attending special institutions and those who attend/attending normal education institutions will be treated as disabled if itted to normal schools against the quota reserved for disabled students or otherwise. (i) Disability in Seeing/ Visual Disability A person who does not have any light perception – both eyes taken together or a person who has light perception but can not count fingers of a hand (with spectacles/ lenses if he/she uses spectacles/ lenses) from a distance of 3 metres (or 10 feet) in good day light with both eyes open is considered as visually disabled. The visually disabled persons may be categorized into two broad groups viz; those with Blindness & those with Low Vision. Blindness: A person who does not have light perception and a person who has light perception but cannot count fingers at a distance of 1 metre even with spectacles is taken as Blind. Low vision: A person who has light perception but cannot count fingers up to a distance of 3 metres even with spectacles is taken as a person with Low Vision. The core question which will decide whether a person is having absolute blindness/incurable/non correctable blindness is the following: (i)

Can you perceive light?

Yes/ No

If the answer is ‘no’, then the person will be treated as an absolute blind person. If the answer is yes, then it means that the person is not absolutely blind and there is scope for improvement of vision after treatment. If the answer to question 1 above is ‘yes’ then the following question may be asked: (ii)

Can you perceive my hand movements? Yes/ No

(iii) Can you count fingers of my hand? Yes/ No (the hand is to be kept one metre to three metres away from the person) The questions (ii) and (iii) are to be asked to the person whose sight is already corrected with the best possible spectacle or lens. Normally, during the survey questions are asked assuming that the person has the best possible correction in the spectacle/lens he is wearing. If the person suffers from low vision even after taking corrective measures, she/he will be recorded as visually disabled under category ‘Low Vision’. Persons with blurred vision who did not have occasion to test their eyesight would improve by using

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spectacles would be treated as having ‘Low Vision’. (The question (i) can be used for assessing prevalence of absolute blindness through census whereas in sample survey further detailed questions may be asked.) (ii) Disability in speech/speech disability A person will be classified as having speech disability if he/she is unable to speak like normal persons. The core question which will identify a person having speech disability is as under: • Is there any one in the house who is unable to speak like others (normal persons)? (This question should not be canvassed for children up to 3 year of age) •

Does he/she not speak at all?

Further probing question may be asked in order to categorise the speech disability: •

Does he/she speak only in single words?

•

Is her/his speech not understood easily by others?

•

Does he/she stammer?

•

Does he/she have any voice problem like hoarse voice or nasal voice?

•

Does he/she have any other speech defect such as articulation defects etc.?

Persons who stammer but whose speech is comprehensible will not be classified as disabled by speech. (iii) Disability in hearing/hearing disability A person will be classified as having hearing disability if he/she has any problem in hearing day to day conversational speech when hearing aid is not used. A person who has problem only in one ear will not be considered as having hearing disability. A person may have the following degrees of hearing disability: •

A person, who does not hear at all or can only hear very loud sounds like thunder and crackers, is considered to have profound disability.

•

A person who can hear speech only when spoken to very loudly, near the ear is considered to have severe disability.

•

A person often asks for repetitions when spoken to or needs to see the face of the person who is speaking is considered to have moderate disability.

•

A person who has difficulty in hearing but it does not interfere in day today conversation is considered to have mild disability.

Core questions to identify the persons with hearing disability are as under:

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•

Is there any one in house who has difficulty in hearing day today conversational speech?

•

Does he/she hear only very loud sounds like thunder/crackers?

•

Does he/she hear speech only when it is spoken very loudly near the ear?

•

Does he/she ask for repetitions when spoken to or needs to watch the face of the person who is speaking?

•

Does he/she have difficulty in hearing but it does not interfere in day today conversation?

(iv) Disability in movement/ locomotor disability Persons with (a) loss or absence or inactivity of whole or part of hand or leg or both due to amputation, paralysis, cerebral palsy, deformity or dysfunction of ts which affects his/her “normal ability to move self or objects” and (b) those with physical deformities in the body (other than limbs), such as, hunch back, deformed spine, etc. regardless of whether the same caused loss or lack of normal movement of body are considered as disable with locomotor disability. Thus, dwarfs and persons with stiff neck of permanent nature who generally do not have difficulty in the normal movement of body and limbs are also to be treated as disabled. (v) Mental disability A mentally disabled person is defined as the one who has difficulty in understanding routine instructions, who does not carry out his/ her activities like others of similar age or exhibited behaviours like talking to self, laughing/crying, staring, violence, fear and suspicion without reason. The “activities like others (normal) of similar age” includes activities of communication (speech), self-care (cleaning of teeth, wearing clothes, taking bath, taking food, personal hygiene, etc.), home living (doing some household chores) and social skills. The mentally disabled are categorized into two groups viz. mentally retarded and mentally ill. If persons with mental disability manifests this behaviour since birth/ childhood but before 18 years of age and the person was late in talking, sitting, standing or walking, they are classified as ‘mentally retarded’. The remaining mentally disabled persons are classified as ‘mentally ill’. The ‘normal time’ for attaining the milestone after birth in the case of ‘sitting’ is before 1 year, for ‘walking’ it is before 2 years and for ‘talking’ it is ‘before 3 years’. In the category of mental disability, both the mental retardation and mental illness should be elicited separately. As in the PWD Act both are listed as separate disability. Core Questions to identify a person with Mental Retardation are as under: 1. Is there anyone in family who has difficulty in understanding instructions, and who does not carry out his/ her activities like others of his age/ her age, such as; •

Motor activities, head holding, sitting, standing, walking, grasping, manipulation

•

Activities of speech and communication C11

•

Activities of self care, brushing teeth, dressing, bathing, feeding, toileting etc.

•

Personal hygiene

•

Activities of household chores

•

Activities of play and socialization

2. Is he/ she late in sitting, standing, talking or walking? 3. Is the abnormal behavior of the person was observed since birth or developed before 18 years of age? If the responses to these three questions are in affirmative it suggests that person may be suffering from mental retardation. Core Questions to identify persons with Mental Illness are as under: 1. Is any one in family does not look after his/her personal hygiene like brush his teeth, take a bath, have regular meals and dresses properly. 2. Is he/ she show abnormal behaviour like violence, laughing and weeping without reason, suspicious, talking to self, hearing voices when alone and irrelevant talks 3. Is he/ she has problems in communication and understanding the verbal and non-verbal messages. 4. Does he/ she has problems related to work and social relationship. If the answer is in affirmative to all four questions then it suggests that person may be suffering from mental illness. Persons, who show signs of mental fatigue, lack of understanding and depend on others for daily routine on of being old, will not be considered as mentally disabled. (vi) Leprosy Cured Persons Any person who has been cured of leprosy but is suffering from(i) Loss of sensation in hands or feet as well as loss of sensation and paresis in the eye and eye-lid but with no manifested deformity; (ii) Manifest deformity and paresis; but having sufficient mobility in their hands and feet to enable them to engage in normal economic activity; (iii) Extreme physical deformity as well as advanced age which prevents him from undertaking any gainful occupation, and the expression "leprosy cured" shall be construed accordingly; Only the persons who have been cured of leprosy and are having type (iii) (as mentioned above) kind of disability will be considered as disabled. The other two types given above will not be considered as disabled.

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Chapter 4 Dimension of Disability in India 4.1 Estimates of Disabled Persons The official estimates of disabled persons in India, obtained through the latest Population Census and National Sample Survey Organisation‟s comprehensive surveys on disability, put the figure as about 21 million (roughly around 2 percent of the population) at the beginning of the new millennium. However, estimates vary across sources and a new World Bank Report1 on disabled persons in India, has observed that „there is growing evidence that people with disabilities comprise between 5 and 8 per cent of the Indian population (around 55 – 90 million individuals). There is a common concern that disabled persons are among the most excluded ones in the development process of the country. For an effective and efficient policy intervention to improve the lots of the disabled persons, it is of utmost importance to get a clear idea of the dimension of disability in India. Although government and the public sector would have to play a key role in this endeavour, it may be neither feasible, nor desirable for them to do it all. Further, there is wide heterogeneity in the situation and the policy requirements of different groups of disabled persons in India. There are major differences in social attitudes to different types of disability, coupled with variations due to gender, class, place of residence (rural / urban) etc. Population Census and NSS surveys are the major two sources of official statistics in India. But the two differ substantially in respect of overall estimates of persons with various types of disability and their composition, mainly due to differences in the concepts and definitions as also the data collection methodologies. Therefore in this section dimension of disability reflected by these two sources would be taken up separately.

A. Findings of Population Census In recent years a question on disability was canvassed during the House listing Operations of 1981 Census where there was considerable under enumeration of physically handicapped persons. The 1991 Population Census did not cover disability. Again in Census 2001, question on disability was included for all the of the households at the time of detail population enumeration. The findings of latest Population Census of 2001 on disability have been discussed here in detail with a brief mention of the observations based on 1981 Census, although the two sets of results were not quite comparable.

1

People with Disabilities in India: From Commitments to Outcomes, by Human Development Unit, South Asia Region, The World Bank.

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4.2 Number of Disabled Persons and their composition: Census 2001 Table 4.1: Total Number (in thousands) of Disabled Persons in India and their Percentage Distribution by Type of Disability Population Category Total Rural Urban Male Female SC ST

Total disabled persons (no. in thousand) 21907 16388 5518 12606 9301 3711 1618

% of disabled in % distribution of disabled persons by type of disability total population seeing speech hearing movement mental 2.13 2.21 1.93 2.37 1.87 2.23 1.92

49 48 50 46 53 49 50

7 8 7 8 8 7 8

6 6 4 5 6 6 8

28 28 26 31 24 29 26

10 10 12 11 10 9 8

Source: Population Census (2001).

In the year 2001, of the persons with disability (PWD) about 75% belonged to rural areas and only 25% were from urban areas. About 58% of disabled were males while only 42% were females. For the population of the country as a whole, 2.13% were found to have one type of disability or the other.

Fig. 4.1: Per cent distribution of disabled persons by type of disability 10%

seeing

28%

speech

hearing 6%

movement 49%

7%

mental

As per Census (2001) findings, where not more than one type of disability was recorded for each PWD, about half of them were found to have visual disability, more than a-fourth had movement disability, about 10% were having mental disability, 7% had speech disability and 6% were with hearing disability. The proportions vary marginally across different sets of population categories. Although the overall estimates of total number of PWD obtained through NSS survey (2002) were not wide off the mark, there were significant variations from Population Census findings with respect to their composition by type of disability.

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4.3 Prevalence of disability: Census 2001 Fig. 4.2 Prevalence Rate (%) of Disability in Various Categories of Population ST

1.92

SC

ST

2.23

Female

SC

1.87

Female

2.37

Male Urban

Male

1.93

Urban

Rural

Rural

2.21

Total

Total

2.13

0.00

0.50

1.00

1.50

2.00

2.50

prevalence (%) of disability

In rural India, the prevalence of disability was much higher (2.21%) as compared to that in its urban counterpart (1.93%). Again, among males, the prevalence of disability (2.37%) was significantly higher than that among females (1.87%). The prevalence rate among SC population (2.23%) was marginally higher as compared to the general population; while among ST population, it was noticeably lower (1.92%). Fig. 4.3: Prevalence of disability in major states of India Maharashtra

1.6

Jharkhand

1.7

Delhi

1.7

Punjab

1.7

Karnataka

1.8

Andhra Pradesh

1.8

Chhattisgarh

2.0

Gujarat

2.1

Uttar Pradesh

2.1

India

2.1

Haryana

2.2

Bihar

2.3

Uttaranchal

2.3

West Bengal

2.3

Madhya Pradesh

2.3

Rajasthan

2.5

Himachal Pradesh

2.6

Tamil Nadu

2.6

Kerala

2.7

Orissa

2.8

Jammu and Kashmir

3.0 0.0

0.5

1.0

1.5

2.0

% of disabled persons

D3

2.5

3.0

3.5

Among the major states of India the prevalence of disability (percentage of disabled in total population) was relatively much higher in J & K (3%), Orissa (2.8%), Kerala (2.7%), Tamil Nadu and H.P. (2.6% each) while it was quite low in Maharashtra (1.6%), Jharkhand, Punjab and Delhi (1.7% each), Karnataka & Andhra Pr.(1.8% each) etc. However, as indicated in state tables S1 and S2 in Appendix-I, if we consider all the states of the country, the prevalence of disability in state population was highest in Sikkim (3.8%). Further, in of numbers, about half of the disabled were located in five states, i.e. Uttar Pradesh, Bihar, West Bengal, Tamil Nadu and Maharashtra. The number of disabled males was higher than that of disabled females in any state in general, except for the case of Tamil Nadu. 4.4 Age-Group wise disability: Census 2001 More than half of the disabled were of age less than 30 and only one-fourth of disabled persons were of age 50 or more. This is of serious concern as most of the disabled persons were found to be very young. This also strengthens the conjecture that the official disability counts might not have fully captured the functional disability incidences faced in old age. It also indicates that government policy and programmes should aim at early mainstreaming of these young persons with disability for a long-run solution to the problem. Table 4.3(a): Total Number and Distribution of Disabled Persons in Different Age-Groups for Various Population Categories Age-group Total no. of PWD % of disabled in each age-group for different population categories (in thousands) Total Rural Urban Male Female 0-4 1200 5.5 5.7 4.7 5.1 6.0 5-9 2057 9.4 9.8 8.1 9.2 9.7 10-19 4475 20.4 20.3 20.9 20.8 20.0 20-29 3271 14.9 14.1 17.4 15.4 14.3 30-39 2848 13.0 12.5 14.5 13.5 12.4 40-49 2371 10.8 10.4 12.0 11.6 9.8 50-59 1838 8.4 8.4 8.5 8.6 8.1 60-69 1919 8.8 9.3 7.2 8.1 9.7 70-79 1233 5.6 6.1 4.3 5.1 6.3 80-89 476 2.2 2.4 1.6 1.9 2.6 90+ 147 0.7 0.7 0.5 0.5 0.9 All age (incl. age not stated) 21907 100.0 100.0 100.0 100.0 100.0 Total no. of PWD (in thousands) 21907 16388 5518 12606 9301 Source: Population Census (2001).

In table 4.3(a), it is observed that percentage of disabled in the working age-groups of 20 – 59 years is more in urban areas than in rural areas. This may be attributed to the fact that working age people in urban areas are much more exposed to mechanized modes at workplace and in day-to-day activities compared to the rural people. The proportion of disabled in older ages (60 and above) is also found to be higher among women as compared to men. D4

Total no. of disabled persons

Fig. 4.4: Estimated total no. of Disabled Persons in each age-group

50 45 40 35 30 25 20 15 10 5 0

44.75 32.71 28.48 23.71

20.57

18.38

19.19 12.32

12.00

4.76

1.47

0.73

Age group (years)

Table 4.3(b): Total Number of Disabled Persons in Different Age-Groups and their Percentage Distribution by Type of Disability Age-group

No. of PWD (in thousands)

0-4 5-9 10-19 20-29 30-39 40-49 50-59 60-69 70-79 80-89 90+ No. of PWD (in ‟000)

% distribution of disabled persons by type of disability in each age-group

1200 2057 4475 3271 2848 2371 1838 1919 1233 476 147 21907

seeing 69 48 40 45 50 51 51 52 52 51 49 10635

speech 3 13 11 9 8 6 5 4 3 2 2 1641

hearing 2 4 4 4 4 5 8 11 14 16 16 1262

movement 20 27 33 30 25 26 28 28 27 27 28 6106

mental 6 9 12 14 14 12 9 6 4 3 4 2264

Source: Population Census (2001).

In table 4.3(b), it can be seen that in age-group 0-4 years percentage of children with visual disability were more(70%) and those with all other disabilities were much less compared to other age-groups. Proportion of PWD with hearing difficulty increased steadily in higher age-groups while movement, mental and speech disabilities were relatively more prevalent between age 5 to 39 years. 4.5 Findings from Population Census 1981 Prior to the year 2001, count of totally blind, totally crippled and totally dumb persons were attempted in the Population Census 1981. In general, out of 0.12 million population reported to be disabled, about 45% were found to be totally blind, 32% were totally crippled and 25% were totally dumb. In D5

comparison to the rural areas, the percentage of totally blind persons was lesser and that of crippled persons was higher in the urban areas. Table 4.4(a): Total number of disabled persons and their % distribution by type of disability Population Category

Total no. of disabled

Total Rural Urban

1118948 969401 149547

% distribution of disabled by type of disability Totally blind 43 44 36

Totally crippled 32 31 39

Totally dumb 25 25 24

Table 4.4(b): Prevalence of disability (% population) Population Category

Total disabled

Totally blind

Totally crippled

Totally dumb

0.16 0.19 0.09

0.07 0.08 0.03

0.05 0.06 0.04

0.04 0.05 0.02

Total Rural Urban Source: Population Census 1981

Only 0.16% of the total population was found to be totally disabled in India in the year 1981. The prevalence of disability was much higher in rural areas as compared to that in urban. Among the three types of severe disability, blindness was most prevalent for the population as a whole. However, in general it was felt that there has been severe under estimation of disabled persons in Census 1981. Fig. 4.5: Prevalence of Disability in Census 1981 and Census 2001 2.50

2.21

2.13

1.93

2.00 1.50 1.00 0.50

0.19

0.16

0.09

0.00

1981

2001

1981

2001

1981

2001

As shown in state table S3 in Appendix-I there was a high prevalence of disability in 1981 in UP, followed by Andhra Pradesh, MP and West Bengal and low in HP, J&K and Haryana. The percentage of totally blind was higher in Rajasthan, U.P. and M.P. and the proportion of totally dumb was high in some of the north –eastern states.

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B. Findings of NSSO Surveys on Disability 4.6 Size of Disabled Population : NSSO survey (2002) National Sample Survey Organisation has been conducting comprehensive nation-wide large scale sample surveys on disability almost once in 10 years. The third and the latest survey on the disabled persons was carried out in the NSS 58th round (July-December 2002), where the coverage was extended to include mental disability also. According to the survey estimates, in 2002, there were 18.5 million disabled persons in the country and they formed about 1.8 per cent of total population. Again out of them 10.63 per cent suffered from more than one type of the disabilities. The types of disability covered were (i) mental disability in the form of (a) mental retardation or (b) mental illness, (ii) visual disability in the form of (a) blindness or (b) low vision, (iii) hearing disability, (iv) speech disability, and (v) locomotor disability. In the case of locomotor disability, more than one type of locomotor disability was considered as multiple disabilities. Table 4.6: Estimated number of persons suffering from different types of disability type of disability mental retardation mental illness Blindness low vision hearing disability speech disability locomotor disability any disability*

Estimated number of disabled persons (in thousands) rural urban male female all persons 700 840 1603 655 2369 1603 7983

295 261 410 159 693 552 2651

626 665 929 369 1613 1291 6634

369 437 1085 444 1448 863 4000

995 1101 2013 813 3062 2155 10634

14085

4406

10891

7600

18491

Note: Estimates obtained by using survey proportions on the projected population. * one or more of mental, visual, hearing, speech and locomotor disabilities Source: NSSO Survey on Disability 2002

Unlike Population Census (2001), here among the different types of disabilities, the number of persons having locomotor disability was found to be highest in both rural and urban India followed by the number of persons with hearing disability and visual disability. However, quite like Population Census, in NSS findings also, 76% of disabled persons were from rural areas and only 24% were from urban areas and 59% were males and only 41% were females. 4.7 Prevalence of Disability: NSSO survey (2002) For the population of the country as a whole, 1.8% were found to have atleast one type of disability. In rural India, the prevalence of disability was more (1.8%) as compared to its urban counterpart (1.5%). Further, among males, the proportion of disabled (2%) was significantly higher than that among females (1.5%). Locomotor disability was most prevalent (more than 1% of population), followed by hearing disability, then visual disability and lastly speech and mental disability, prevalence of each of which was D7

quite low (less than 0.3%).The prevalence of locomotor disability was much higher among males (1217 per 100000 population) than among females (785 per 100000 population).Between the two sectors, the prevalence of almost all types of disability was more in the rural sector as compared to the urban. However, identification of mental retardation was found to be more prevalent in the urban sector. Higher prevalence of disability due to blindness and low vision among women than among men, corroborates the similar findings in Census 2001. In of proportion this is true about hearing disability, too. Table 4.7: Prevalence of disability per 1,00,000 persons for each sex and sector Number of disabled persons per 1,00,000 population rural urban male female All persons 92 100 115 72 94 110 89 122 86 105 210 140 171 214 192 86 54 68 87 77 310 236 296 285 291 210 187 237 169 204 1046 901 1217 785 1008 1846 1499 2000 1493 1755

type of disability mental retardation mental illness Blindness low vision hearing disability speech disability locomotor disability any disability

Source: NSSO Survey on Disability 2002

Fig. 4.6 Prevalence of Disability per 100,000 persons

any disability

1755 1008

locomotor disability

204

speech disability

291

hearing disability 77

low vision

Series1

192

blindness

105

mental illness

94

mental retardation 0

500

1000

1500

Number of disabled per 100000 population

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2000

Table 4.8: Percentage distribution of disabled persons by type of disability for each sex and sector Percentage of disabled persons for each type of disability rural urban male female All persons 5 7 6 5 5 6 6 6 6 6 11 9 9 14 11 5 4 3 6 4 17 16 15 19 17 11 13 12 11 12 57 60 61 53 57 100 100 100 100 100

type of disability mental retardation mental illness blindness low vision hearing disability speech disability locomotor disability any disability

Note: The total of rows do not add up to 100 since more than 10% disabled persons had multiple disabilities Source: NSSO Survey on Disability 2002

4.8 Social Group of Disabled persons: NSSO survey (2002) While studying the social group, it would be interesting to find out whether distribution of disabled people by social groups was different from that for the general population. In the rural areas, the distribution of social groups in general households and households reporting disability was found to be more or less same. In the urban sector, the households reporting disability had a relatively higher percentage share of SC(18%) and OBC (38%), and a relatively lower percentage in the category „others‟(41%) households in comparison to general households for which the respective percentage share of these social groups were 15%, 33% and 48%. Fig. 4.7 Percentage distribution of households by social group 100% 90%

26

26

80%

41

48

70% 60% 50%

41

42

40%

20% 10% 0%

38

33

30%

22

23

10

9

All households

Households with disabled persons

15 3

18

All households

Households with disabled persons

3

Rural

Others

Urban

OBC

SC

ST

Among the disabled persons, 7% were ST, 22% were SC, 41% belonged to OBC and 30% were categorized as others. In the rural sector, only 26% of the disabled persons belonged to the social group „others‟, whereas in the urban areas 41% disabled were from „others‟. Thus the distribution of disabled

D9

persons by social group was markedly different between the rural and the urban sector, but there was very little differences between the two sexes as revealed in table below. Table 4.9: Percentage distribution of disabled persons by social group for each sex and sector Population Category

ST

SC

OBC

Others

All

rural urban male female all persons

8.4 2.5 6.6 7.7 7.1

23.2 18.4 22.1 22.2 22.1

42.2 37.6 41.3 41.1 41.2

26.2 41.4 30.0 29.0 29.6

100 100 100 100 100

Source: NSSO Survey on Disability 2002

In all categories of population, the percentage of incidences of disability was significantly higher for OBC people as compared to the other social groups. 4.9 State-wise Prevalence: NSSO survey (2002) In the latest NSS survey on disability, the proportion of disabled persons in the population was found to be relatively high (more than 2%) in H.P (2.6%), Orissa (2.5%), Kerala (2.2%), and Punjab (2%) while it was significantly low in Delhi (0.6%), Assam (1.0%), Jharkhand (1.2%), Rajasthan (1.5%) etc. However, in almost half of the states the prevalence was in the range of 1.7% to 1.8%. Fig.4.8 : Prevalence of disability in major states/UT's in India Delhi

0.6

Assam

1.0

Jharkhand

1.2

Rajasthan

1.5

Karnataka

1.6

Jammu & Kashmir

1.6

Madhya Pradesh

1.7

Bihar

1.7

all-India

1.8

Uttaranchal

1.8

Chhatisgarh

1.8

Andhra Pradesh

1.8

Maharashtra

1.8

Gujarat

1.8

West Bengal

1.8

Haryana

1.8

Tamil Nadu

1.9

Uttar Pradesh

1.9

Punjab

2.0

Kerala

2.2

Orissa

2.5

Himachal Pradesh

2.6 0.0

0.5

1.0

1.5

% of disabled among population

D10

2.0

2.5

3.0

If prevalence of different types of disability in individual states can be examined as in state table S5 in Appendix-I, it can be found that among major states mental retardation was reported highest in Kerala and lowest in Assam and other small north-eastern states. Mental illness was also most prevalent in Kerala and H.P. but lowest in Delhi, Karnataka, Andhra Pradesh etc. Blindness was widely prevalent in Orissa, H.P. and U.P. Low vision was high in Orissa, Kerala, H.P. and low in Jharkhand and Haryana. Hearing impairment occurred in large proportions in Sikkim, Pondicherry, H.P., Lakshadweep and much lower in Delhi, Chandigarh, Assam. Speech disability also recorded high in Sikkim, Pondicherry, Goa, Kerala and low in Delhi, Assam, Rajasthan, Punjab etc. The states possessing the largest percentage of locomotor disabled persons were Himachal Pradesh, Punjab and Uttar Pradesh, Haryana and relatively low in many of the northeastern states and Assam. Thus, it can be seen from above that for almost all types of disability, Kerala and Himachal Pradesh had high prevalence as compared to other major states of the country while Assam and Jharkhand had it low. In Delhi prevalence of almost all the disabilities were negligible as compared to the other states of the country. The pattern of disability prevalence in the major states as observed from NSS 2002 results were quite different from the pattern observed from Census 2001 results, which had lesser dispersion with higher central tendency as against higher dispersion and smaller central tendency for NSSO 2002 results over the major states. 4.10 Age-group wise Prevalence: NSSO survey (2002) In general, the proportion of persons with any disability was found to be increasing steadily with age from about 500 per 100000 population for age less than 5 to more than 1700 (per 100000 population) till age 20. Thereafter it remains more or less same almost till the age 50. Thereafter, it increases rapidly with age to about 3000 for age-group 55-59 and more than 6000 after age 60 years. Fig. 4.9 Number of disabled persons per 100,000 persons in each age-group 6401

6750 6000 5250

Rural

Urban

4500 3750

3025

3000

2283

2250

1549 1167

1500 750

1907 1748 1627 1487 1448 1444 1594

523

0

Age-group(years)

D11

1846

In particular, as revealed in the next table, for mental illness, blindness, low vision and hearing disability there was a steady rise in the prevalence of disability with age. But for each of the age-groups, prevalence of disabilities in rural areas was invariably higher than that in urban except for mental retardation which was reported more in the urban areas. Table 4.10: Number of disabled persons per 100,000 persons for each age-group and type of disability agegroup (years)

mental retardation

mental illness

blindness

low vision

type of disability hearing speech

hearing & speech

locomotor

at least one disability

rural 0–4

59

12

32

5

55

129

86

334

523

5–9

115

32

48

12

172

297

209

716

1167

10-14

148

53

52

22

196

281

212

999

1549

15 – 19

172

91

56

21

193

243

208

1181

1748

20 – 24

141

111

65

23

200

263

245

1039

1627

25 – 29

105

155

68

17

205

207

198

895

1487

30 – 34

91

173

77

16

207

169

175

852

1448

35 – 39

64

173

75

32

235

175

156

825

1444

40 – 44

39

186

128

43

261

158

148

912

1594

45 – 49

23

172

183

65

292

137

117

1143

1907

50 – 54

23

194

266

124

453

135

139

1258

2283

55 – 59

17

178

431

234

537

136

98

1668

3025

11

180

1733

747

1551

190

132

2796

6401

all

92

110

210

86 310 urban

210

172

1046

1846

0–4

75

16

30

5

55

132

86

291

487

5–9

153

35

73

16

142

285

215

557

1015

10-14

165

55

82

10

209

338

326

758

1317

15 – 19

164

73

44

13

145

223

158

875

1337

20 – 24

137

92

56

18

118

175

158

819

1242

25 – 29

87

100

43

20

120

149

129

620

1000

30 – 34

86

102

30

19

134

116

101

669

1054

35 – 39

93

117

53

20

135

112

107

726

1138

40 – 44

46

141

79

30

143

118

117

868

1309

45 – 49

50

131

105

39

219

124

123

941

1476

50 – 54

25

111

182

98

213

115

67

1224

1855

55 – 59

12

131

283

122

391

132

80

1683

2571

7

167

1087

459

1385

223

137

2888

5511

100 89 140 Source: NSSO Survey on Disability 2002

54

236

187

153

901

1499

60 & above

60 & above all

The proportion of persons with mental retardation and speech disability increased with age initially and thereafter decreased gradually. Mental retardation was mostly found in ages between 10 to 20 years

D12

while speech disability detected in large numbers among children aged 5 to 14 years. After age 60, cases of speech disability start increasing again. Almost 80% of the persons with speech disability had hearing disability as well, in both rural and urban sector. Prevalence of both forms of visual disability, i.e. blindness and low vision increased with age. Similar was the pattern of hearing disability. For loco motor disability, initially there was increase in the prevalence with age, followed by a dip in the age groups between 20 to 40 years, after which the proportion again showed an upward trend. 4.11 Prevalence of disability: Comparison over NSS surveys over time The first comprehensive survey on physical disability was carried out in NSS 36 th round (July – December, 1981) and its follow-up survey in NSS 47th round (July – December, 1991). Beginning with 36th round, the concepts, definitions and survey procedures for capturing the physical disability were retained the same in all the surveys on disability including the 58th round. Only the mental disability was included for the first time in the 58th round. It is, therefore, worthwhile to see the changes in the prevalence of disability in the country. However, the age restrictions for the hearing and speech disability were done away with in the 58th round and accordingly the results were not strictly comparable with the previous rounds. Table 4.11: Prevalence of disabled persons per 100,000 persons obtained from NSS surveys of 36th, 47th and 58th rounds 36th round 47th round 58th round sex (July-Dec. ‟81) (July-Dec. ‟91) (July-Dec. ‟02) rural male 2045 2277 2118 female 1632 1694 1556 persons 1844 1995 1846 urban male 1532 1774 1670 female 1297 1361 1311 persons 1420 1579 1499 Source: NSSO Survey on Disability 2002

Between 1981 (NSS 36th round) and 2002 (58th round), there was no major change in the prevalence of disability, especially in the rural sector; although NSS 47th round (1991) recorded a slightly higher prevalence of disability for both males and females, or rural and urban. In that survey round developmental milestones of children had been surveyed along with disability. In general, in all the survey rounds prevalence of disability was found to be highest (more than 2000 per 100000 population) among rural males and lowest among urban females (about 1300 per 100000 population).

D13

prevalence of disability (per 100,000 population

Fig. 4.10: Prevalence of disability per 100,000 persons over NSS rounds 2500 2000

1995

1844

1846

1500

1499

1579

1420 1000

500 0 36th round (July-Dec 47th round (July-Dec 58th round (July-Dec '81) '91) '02) Rural

Urban

4.12 Age at the onset of any type of disability: NSSO survey (2002) Some people are born disabled and some acquire disability in course of time. For those who acquired disability after birth, information relating to age at onset of disability was collected. In order to study the pattern of age at the onset of disability, the cohort of persons of age 60 years and above who acquired any type of disability, had been considered and their distribution over age at onset of disability had been studied. In general, about a third of the disabled persons were reported to have onset of disability since birth. Among persons with mental retardation or speech disability acquired the disability more than 80% got it since birth. In contrast, only a small percentage of persons with low vision or blindness (less than 20%) were born with the disability, while others had acquired them at later ages. Among persons with mental illness and those with loco motor or speech disability the proportion of disabled since birth was marginally higher. Table 4.12: Percentage of persons disabled since birth among the disabled persons by type of disability %persons disabled since birth among disabled persons of age 60 years & above type of disability rural urban male female persons mental retardation 85 82 83 85 84 mental illness 24 20 23 23 23 blindness 15 17 18 13 16 low vision 8 11 12 6 9 hearing disability 37 37 39 35 37 speech disability 83 76 81 83 82 locomotor disability 29 24 27 29 28 any disability 33 30 33 31 32 Source: NSSO Survey on Disability 2002

D14

Table 4.13: Per 1000 distribution of persons 60 years and above for each type of disability by age at onset of disability Age at onset of Mental Mental Low Blindness Hearing Speech Locomotor disability retardation illness vision 866 47 18 6 65 356 54 Disability since birth 75 0 7 5 6 9 20 0–4 0 8 8 4 9 9 16 5–9 10 – 14 47 6 8 3 14 13 14 12 13 5 1 6 5 8 15 – 19 0 30 4 2 14 1 13 20 – 24 0 32 5 1 6 1 7 25 – 29 30 – 34 0 40 8 1 16 13 18 0 132 32 11 46 25 55 35 – 44 0 368 233 248 247 198 284 45 – 59 0 323 673 717 571 369 511 60 & above All age 1000 1000 1000 1000 1000 1000 1000 Source: NSSO Survey on Disability 2002

More than 85% of the persons of age 60 years and above suffering from mental retardation were disabled since birth. Almost 36% of the speech disabled persons were disabled since birth. Apart from that, for all other types of disability, the most common age at onset was after 45 years of age. In particular, in case of low vision and blindness, in more than 90% cases, age at onset has been beyond 45 years, and out of them almost for 70%, the disability was acquired after age 60. 4.13 Extent of physical disability: NSSO survey (2002) For determining the extent of physical disability of a disabled person, self-care, such as, ability to go to latrine, taking food, getting dressed, etc. were taken into . The disabled persons were classified into one of the four categories, viz., (i) those not able to take self-care even with aid/appliance, (ii) those able to take self-care only with aid/ appliance, (iii) those who can take self care without aid/appliance, (iv) aid/appliance not tried/ not available. Table 4.14: Percentage distribution of physically disabled persons by extent of physical disability Extent of disability cannot take self-care even with aid/ appliance can take self-care only with aid/ appliance can take self-care without aid/ appliance aid/ appliance not tried/ not available Total (incl. non-reporting cases)

rural

urban

male

female

all persons

13

14

12

15

13

17

18

18

16

17

60

61

61

59

60

10 100

6 100

9 100

10 100

9 100

Source: NSSO Survey on Disability 2002

D15

Fig. 4.11 Percentage distribution of physically disabled persons by extent of physical disability 100%

90%

10

6

9

10

9

61

61

59

60

80%

aid/ appliance not tried/ not available

70%

60%

60

can take self-care without aid/ appliance

50% 40% 30% 20% 10%

17

18

18

16

17

13

14

12

15

13

0%

can take self-care only with aid/ appliance

cannot take self-care even with aid/ appliance

It was found that about 60% could take self-care without aid/appliance and another 17% could take selfcare only with aid/appliance and 9% had not tried or aid/appliance or those were not available to them. But 13% of the disabled persons could not take self-care even with the help of aid/appliance and therefore they remain the most critical section of disabled population. Among disabled females the proportion with this severe disability was more (15%) than among disabled males (12%). About 10% of rural disabled persons had not tried aid/appliance or it wasn‟t available to them as compared to only 6% in the urban. It would however be more interesting to study the pattern age-group-wise. Almost 80% of the disabled persons were of age 15 years or above and among them also about 13% could not take self-care even with aid/ appliance, 19% could take self-care only with aid/ appliance, 60% could take self-care without aid/ appliance and 9% did not try any aid/ appliance to overcome their difficulties. For those of age 60 years and above, the proportions were different with almost 20% of them not reported to be able to take self-care even with aid/ appliance.

D16

Table 4.15: Number of physically disabled persons by extent of physical disability per 1000 physically disabled persons in each age-group and sex age –group extent of physical disability per 1000 (years) can not take can take self- can take self- aid/ appliTotal distribution of disabled self-care even care only care without ance not (incl. persons by age with aid/ with aid/ aid/ tried/ not n.r. appliance appliance appliance available cases) 0–4 300 111 404 184 1000 31 5–9 159 88 644 106 1000 78 10 – 14 101 113 687 96 1000 100 15 – 19 89 139 695 76 1000 90 20 – 24 86 139 702 71 1000 73 25 – 29 79 132 699 87 1000 56 30 – 34 80 112 728 79 1000 50 35 – 39 80 124 718 75 1000 51 40 – 44 95 159 654 91 1000 46 35 – 44 87 141 688 83 1000 97 45 – 49 111 169 644 76 1000 52 50 – 54 110 178 628 83 1000 47 55 – 59 126 219 573 81 1000 51 45 – 59 115 189 615 80 1000 150 60 & above 193 265 447 93 1000 275 15 & above 128 190 596 84 1000 791 All age 133 172 603 90 1000 1000 Source: NSSO Survey on Disability 2002

n.r.: not reported

4.14 Variation in Disability estimates of NSSO and Census figures on Disability As per the latest NSSO Disability Survey (July to December 2002) report, the number of disabled persons in the country was estimated to be 18.5 million, who formed about 1.8 per cent of the total population. On the other hand Population Census 2001 found 21.9 million of PWD in India (about 2.13 per cent of total population). The difference in total number as also prevalence of disability can partly be explained by major differences in concepts, definitions, methodology, type of question asked etc. Besides, multiple disabilities also ed for some differences. About 10.63 per cent of the disabled persons suffered from more than one type of disabilities as revealed by NSSO survey, while collected data on only one type of disability for each disabled person. The comparative figures on Persons with Disabilities (PWD) based on NSSO 2002 survey (58th round) and Census 2001are given below:

D17

Table 4.16: Number of physically disabled persons (in 100000) as obtained by the latest NSS Survey on Disability (2002) and those from the Population Census 2001

Type of Disability

Total number of PWD( in 100000) NSSO Estimate 2002

Census Estimate 2001

Locomotor

106.34

61.05

Visual

28.26

106.35

Hearing

30.62

12.62

Speech

21.55

16.41

Mental

20.96

22.64

Total

184.91

219.07

In of the prevalence by individual type of disability, the differences were large between estimates from these two major official sources of disability statistics, especially for locomotor and visual disability. However, it is often argued that, the official disability estimates, obtained from either Population Census or dedicated NSS surveys on the subject can at best be considered to be reliable estimates of severe disabilities only. This is because, both the methods rely more on traditional diagnostic identification of disability, rather than the functional disability consideration. Typically, the elderly population, large number of whom may be functionally disabled, are usually not identified so by the households and therefore not reported as disabled in any household level enquiry, the way the disability questions are asked. There are other socio-cultural reasons including social stigma attached to disability which may for low reporting of cases. Even the 11th five-year Plan document had noted that, “it can be reasonably argued that persons with disabilities constitute anywhere between 5 to 6 per cent of our total population”. Thus, the official estimates can be considered as the lower bound estimates with a strong bias towards more serious disabilities only.

D18

Chapter 5 Nature and Causes of Different Types of Disability In this chapter a detail discussion on nature and causes of disability is made separately for each type of disability. Information on these aspects of disability was collected in the NSSO surveys on disability, latest one being held in the year 2002. Information on mental disability was collected for the first time in this latest survey. 5.1 Mental Disability: Causes of mental disability: In more than 50% cases mental retardation has been reported to be caused by serious illness or head injury in the childhood. Across various sub-populations like rural, urban, male or female the causes of mental retardation remained more or less same. Table 5.1: Percentage distribution of persons with mental retardation or mental illness by cause of mental disability for each sex and sector Cause of mental disability Pregnancy & birth related Serious illness during childhood Head injury in childhood Heredity Other reasons Not known Total*

Rural 3 39 9 2 20 25 100

Urban 3 46 13 3 16 18 100

Pregnancy & birth related Serious illness during childhood Head injury in childhood Heredity Other reasons Not known Total *

3 7 3 3 44 40 100

2 15 5 3 50 25 100

Source: NSSO Survey on Disability (2002)

Mental Retardation Male Female 2 4 42 40 9 11 3 2 19 19 23 23 100 100 Mental Illness 0 6 9 9 3 3 3 3 48 42 36 37 100 100

All persons 3 42 10 2 19 23 100 2 9 3 3 46 36 100

*total incl. not recorded cases of 'cause of mental retardation'

In contrast to rural areas, more number of the persons reported to be mentally retarded due to serious illness in childhood in the urban areas. Also in rural areas the cause of disability was not known to more number of persons as compared to urban areas. Contrary to common belief, in less than 5% cases it was reported to be due to birth related causes or heredity. E1

In case of mental illness again only in very few cases it was attributed to heredity, birth related reasons and in only 9% cases were reported to be due to serious illness in the childhood. In 36% cases respondents could not report the exact cause of disability. Unlike the cases of mental retardation, for mental illness the percentage distribution by causes of disability varied, though marginally, from one sub-population to the other. Fig. 5.1: Percentage distribution of all persons having mental retardation or mental illness with age at onset 0-18 years by cause of disability % distribution of persons with mental illness and age at onset 0-18 years by cause of disability

% distribution of persons with mental retardation and age at onset 0-18 years by cause of disability 3%

2%

Pregnancy & birth related

23%

9% 3%

Serious illness during childhood 43%

3%

37%

Head injury in childhood Heredity

19%

Other reasons 2%

46% 10%

Not known

Table 5.2: Per cent distribution of persons 60 years and above with mental retardation or mental illness by age at onset of disability Mental retardation Mental illness Age at onset All Since birth 0–4 5–9 10 – 14 15 – 19 20 – 24 25 – 29 30 – 34 35 – 44 45 – 59 60 & above Total

Rural

Urban

Male

Female

90

71

85

90

persons 87

7 0 3 0 0 0 0 0 0 0 100

8 0 13 8 0 0 0 0 0 0 100

10 0 3 2 0 0 0 0 0 0 100

4 0 7 0 0 0 0 0 0 0 100

8 0 5 1 0 0 0 0 0 0 100

Rural

Urban

Male

Female

All persons

5

3

5

5

5

0 1 0 1 3 3 4 12 41 28 100

0 1 1 2 3 3 4 16 21 47 100

0 1 1 2 3 4 5 12 34 35 100

0 1 1 1 3 3 4 14 39 30 100

0 1 1 1 3 3 4 13 37 32 100

Source: NSSO Survey on Disability (2002)

Age at onset of mental disability: Mental retardation can be seen as a phenomenon whose manifestation was observed mostly at birth or at very early ages of life. More than 85% of the persons with mental retardation were disabled since birth. The proportion was still higher in the rural areas (90%) as E2

compared to the urban areas (about 70%) and again more for females (90%) than for males (85%). For 8% of the persons with mental retardation, the age at onset was 0-4 years (in both rural and urban areas). Another 3% acquired it between ages 10-14 years. On the other hand, the problem of mental illness is more of an old age problem. Only 5% of the persons with mental illness were disabled since birth and another 10% acquired it between ages 5 to 34 years. Age 35 years onwards the disability starts setting in. For nearly 40% cases, the age at onset was 45-49 years and more than 30% acquired mental illness after the age of 60 years. Unlike rural areas, in urban areas about 20% fell mentally ill in the age-group 45-49 years and almost 50% acquired the disability after the age of 60 years. There was no major difference with respect to onset of mental illness for males and females. Fig. 5.2: Per cent distribution by age at onset for persons with mental retardation and mental illness

59 ab ov e

44

60

&

45

–

34

– 35

29 30

–

24 25

–

19

–

– 15

20

9

– 10

Age at onset

bi lit y Di sa

14

4

–

–

5

0

sin ce

bi rth

Per cent incidence

100 90 80 70 60 50 40 30 20 10 0

Mental retardation

Mental illness

Table 5.3: Per cent distribution of mentally retarded persons by the delay in developmental activity for each sex and sector Mentally retarded who were late in Sitting Walking Talking Combination of sitting, walking & talking All mentally retarded persons

Rural

Urban

Male

Female

All persons

2.6 2.1 9.0 86.3 100

1.9 2.6 10.3 85.2 100

2.4 2.5 9.3 85.8 100

2.3 1.9 9.5 86.3 100

2.4 2.3 9.4 86.0 100

Source: NSSO Survey on Disability (2002)

More than 85% of the mentally retarded persons showed a delay in the development of combination of sitting, walking and talking. About 10% were late only in talking and 2% each were late in only sitting or only walking. The trends were nearly the same among males and females although there were some minor differences between rural and urban areas. 5.2 Visual Disability Prevalence of visual disability over years: The prevalence of visual disability can be examined over past NSS surveys. The prevalence of visually disabled persons has first shown a marginal drop from the year 1981 to 1991. Thereafter there has been a sharp dip in their proportion in the year 2002. The reduction in E3

the proportion of visually disabled has been significantly more in rural sector as compared to its urban counterpart. Table 5.4: Prevalence of visually disabled persons per 1,00,000 population over NSS surveys sector rural urban

NSS 36th round (July – December, 1981) male female person 444 670 553 294 425 356

NSS 47th round (July – December, 1991) male female person 471 548 525 263 346 302

NSS 58th round (July – December, 2002) male female person 276 326 296 163 228 194

Next we can examine degree of disability, causes of disability, age at onset etc., separately for blind and for those with low vision. Table 5.5: Percentage distribution of persons with visual disability by degree of disability for each category Degree of disability Rural Urban Male Female All persons no light perception 34 35 35 34 35 has light perception but cannot count fingers from a distance of 1 meter: and normally uses specs. 14 18 16 14 14 and normally does not use specs. 23 19 20 24 22 Blindness (sub-total) 71 72 71 71 71 has light perception but cannot count fingers from a distance of 3 meters: and normally uses specs. 9 12 10 9 10 and normally does not use specs. 20 15 18 20 19 Low vision(sub-total) 29 28 28 29 29 All visually disabled 100 100 100 100 100 Source: NSSO Survey on Disability (2002)

Degree of visual disability: Out of the total visually disabled persons, more than 70% were blind (of which 35% had no light perception and more than 35% had light perception but could not count fingers from a distance of 1meter) and nearly 30% suffered from low vision (that is the persons who had light perception but could not count fingers from a distance of 3 meters). The overall proportions of blind and low vision among the visually disabled remained more or less same across sectors and sex. Among the E4

visually disabled persons, who had light perception, a higher percentage of persons in the urban areas were using spectacles as compared their rural counterparts

Low vision

Fig. 5.4: Per cent distribution of persons with visual disability by degree of disability 19

normally doesnot use specs 10

normally uses specs

22

.

Blindness

has light perception and doesnot use specs 14

has light perception and uses specs

35

no light perception 0

5

10

15

20

25

30

35

40

Causes of Visual Disability: Table 5.6: Per thousand distribution of persons with blindness or low vision by cause of disability for each sex and sector Cause of Visual Disability

sore eyes first month life sore eyes after one month severe diarrhoea before age 6 cataract glaucoma corneal opacity other eye diseases small pox burns injury other than burns medical/ surgical intervention old age other reasons not known total*

Blindness Rural 3 6 7 212 52 21 170 47 4 38 22 250 70 90 1000

Source: NSSO Survey on Disability (2002)

Urban 1 8 8 196 80 40 164 36 2 47 49 200 74 89 1000

Low vision

Male Female 4 2 8 5 8 6 192 223 56 59 25 24 183 157 51 40 4 3 54 28 26 28 202 272 90 55 87 92 1000 1000

All person Rural 3 1 6 2 7 5 209 280 58 32 25 48 169 109 45 10 3 3 39 44 27 17 241 295 71 34 90 110 1000 1000

All Urban Male Female persons 1 1 0 1 4 5 1 3 7 8 3 5 358 276 309 294 40 36 31 33 14 53 33 42 163 137 104 119 9 14 7 10 3 2 4 3 58 69 29 47 28 22 16 19 198 223 321 278 52 42 33 37 59 102 99 101 1000 1000 1000 1000

* ’total’ includes not recorded cases of ‘cause of blindness/low vision’

More than 60% of the persons with blindness acquired disability due to the following three reasons - old age (nearly 25%), cataract (21%) and other eye diseases (more than 15%). Similarly about 70% of the persons with low vision also acquired disability due to these same three reasons-cataract and old age (nearly 30% each) and other eye diseases (more than 10%).

E5

Fig. 5.5: Per 1000 distribution of visually disabled persons by cause of disability burns

3

sore eyes first month life

3

sore eyes after one month

6

severe diarrhoea before age six

7

corneal opacity

25

medical/ surgical intervention

27

injury other than burns

39

small pox

45

glaucoma

58

other eye diseases

169

cataract

209

old age

241

other reasons

71

not known

(Per cent )

90

0

50

100

Blindness

150

200

250

300

350

Low vision

These three reasons were more prevalent in the rural areas as compared to urban sector in case of blindness. But, in case of low vision, in urban areas, cataract and other eye diseases were significantly more responsible for causing disability, whereas in rural sector a higher proportion of persons had low vision due to old age. Other reasons that were more significantly responsible for blindness especially in the urban areas were glaucoma, corneal opacity, injury other than burns and medical/ surgical intervention. In contrast to males, cataract and other eye diseases were more common, and injury other than burns, old age and other reasons were less prevalent among females. Age at onset of visual disability: More than two-third of persons with blindness and more than 70% of persons with low vision acquired the disability after the age of 60 years. Another 25% got disabled in the age group 45-49 years and there was very little difference in this respect between the two types of visual impairment. Less than 2% of visually challenged persons were disabled since birth.

E6

Table 5.7: Per 1000 distribution of persons 60 years & above with blindness/ low vision by age at onset of disability Age at onset Since birth 0–4 5–9 10 – 14 15 – 19 20 – 24 25 – 29 30 – 34 35 – 44 45 – 59 60 & above total

Rural 19 7 9 7 4 4 5 7 34 220 684 1000

Urban 13 9 5 10 10 2 1 12 22 294 621 1000

Blindness Male Female 21 15 5 8 7 9 7 8 4 6 2 5 2 7 12 5 41 25 214 246 683 666 1000 1000

All persons Rural 18 7 7 6 8 5 8 3 5 1 4 2 5 1 8 1 32 9 233 248 673 717 1000 1000

Low vision Urban Male Female 5 13 2 1 2 7 0 5 4 3 4 3 0 3 0 4 2 2 1 0 1 0 2 0 21 7 14 245 233 258 716 729 708 1000 1000 1000

All persons 6 5 4 3 1 2 1 1 11 248 717 1000

Source: NSSO Survey on Disability (2002)

5.3 Hearing Disability Prevalence of hearing disability- comparison over NSS survey rounds: Table 5.8: Prevalence rate (per 100,000 persons) of hearing disability obtained in NSS 36th, 47th and 58th rounds by sex and sector NSS 36th round NSS 47th round NSS 58th round* (July – December, 1981) (July – December, 1991) (July – December, 2002) sector male

female

persons

male

female

persons

male

female

persons

rural

595

510

573

498

435

467

351

332

342

urban

386

395

390

325

355

339

252

256

254

* for persons of age 5 years and above in NSS 58

th

round.

There has been a steady decline in the proportion of persons with hearing disability between 1981 (36 th round) and 2002 (58th round). However in the NSS 58th round the information on having hearing disability was obtained from persons of age 5 years and above unlike the previous two surveys. Also there was a sharper drop in the prevalence of disability in the rural areas as compared to the urban sector.

E7

Degree of hearing disability: Depending upon the extent of person’s inability to hear properly, the degree of hearing disability has been classified into 3 categories- profound, severe and moderate. A person was considered as having very severe or profound hearing disability, if he/she could not hear at all or could hear only loud sounds. Severe hearing disability exists, if a person could hear only shouted words, while moderate hearing disability was reported when the disability was neither very severe nor severe. Persons having moderate hearing disability usually would ask to repeat the words spoken by the speaker or like to see the face of the speaker during conversations. Table 5.9: Per cent distribution of persons with hearing disability by degree of disability for each sex & sector Degree of disability Rural Urban Males Females All persons Profound 31 34 32 31 32 Severe 40 36 38 40 39 Moderate 29 29 29 29 29 All 100 100 100 100 100 Source: NSSO Survey on Disability (2002)

Among the persons with hearing disability, in more than 30% cases disability was reported to be profound, another 40% had severe disability, and only 30% had moderate hearing disability. Across different subpopulations the proportions remained more or less same. Causes of hearing disability: The single major reason for hearing disability was old age (more than 25%). Other major causes included other illness (more than 20%) and ear discharge (more than 15%). In more than 15% of the cases, the cause was not known. Among the two sectors, ear discharge was a more prevalent cause in the rural sector than the urban sector, while for other causes including old age and noise induced hearing loss were more prevalent in the urban sector. In the rural sector more than 18% of disabled persons did not know the cause of hearing disability. Table 5.10: Per cent distribution of persons with hearing disability by cause hearing disability Cause of hearing disability German Measles/ Rubella noise induced hearing loss ear discharge other illness burns injury other than burns medical/ surgical intervention old age other reasons not known Total (including not recorded cases )

Rural

Urban 0.6 1.7 16.5 22.9 0.2 4.7 1.4 25.4 7.7 18.3 100

Source: NSSO Survey on Disability (2002)

E8

0.8 3.1 13.2 22.1 0.2 5.9 2.2 29.5 9.9 12.8 100

Male

Female 0.8 2.5 16.2 22.0 0.3 5.6 1.3 25.4 7.9 17.5 100

0.5 1.5 15.4 23.5 0.1 4.2 1.8 27.2 8.5 16.8 100

All persons 0.7 2.0 15.8 22.7 0.2 4.9 1.5 26.3 8.2 17.2 100

Fig.5.8: Per cent distribution of persons with hearing disability by cause of hearing disability 1% 2%

German Measles/ Rubella noise induced hearing loss

17%

16%

ear discharge other illness

8%

burns injury other than burns 23%

medical/ surgical intervention 26%

old age 2% 5%

other reasons 0%

not known

Age at onset of hearing disability: Nearly 60% of the persons with hearing disability acquired the disability after the age of 60 years and about 25% acquired it in the age-group 45-49 years. About 6% got hearing disability since birth. As compared to the rural areas, lesser proportion of urban persons was disabled since birth and a higher percentage acquired it after 60 years. Among males and females, a higher proportion of males was disabled since birth or acquired it after the age of 60 years. By and large hearing disability can be considered more as old age disability.

Table 5.11: Per 1000 distribution of persons 60 years and above with hearing disability by age at onset of disability for each sex and sector Age at onset Since birth 0–4 5–9 10 – 14 15 – 19 20 – 24 25 – 29 30 – 34 35 – 44 45 – 59 60 & above total

Rural 68 7 7 15 5 16 5 16 46 257 557

Urban 53 5 14 10 10 8 8 13 47 215 618

1000

1000

Source: NSSO Survey on Disability (2002)

E9

Male 77 8 7 16 5 14 5 14 41 227 585

Female 53 5 10 12 6 15 7 18 51 267 557

All persons 65 6 9 14 6 14 6 16 46 247 571

1000

1000

1000

In more than 80% of cases the hearing disability was reported to have been acquired after age 45 years and in most cases after the age of 60 only. Only 6% were born with the disability and another 13% acquired it before the age of 45 years. More males were found to be born with hearing impairment as compared to females. 5.4 Speech Disability Prevalence of speech disability - comparison over NSS survey rounds: Three surveys on disabled persons were conducted adopting more or less the same concepts, definitions and procedures during the second half of 1981, 1991 and 2002, respectively. It is, therefore, possible to examine the changes in the prevalence of speech disability in the period 1981 to 2002. It may be noted that while the data for 36 th and 47th rounds were collected for persons of age 5 years and above, those for the 58th round were collected for all ages. Hence for the sake of comparison estimates for persons of age 5 years or more have been taken for NSS 58th round. Table 5.12: Prevalence rate (per 100,000 persons) of speech disability obtained from NSS 36th, 47th and 58th rounds by sex and sector NSS 36th round NSS 47th round NSS 58th round* sector (July – December, 1981) (July – December, 1991) (July – December, 2002) male female persons male female persons male female persons rural 379 228 304 333 208 273 254 184 220 urban 342 207 279 285 182 237 228 154 193 * for persons of age 5 years and above

Fig.5.10 Prevalence rate (per 100,000 persons) of speech disability obtained from 36th,47th & 58th rounds by sector 350 300

250

304 273 279 220

200

237 193

150 100 50 0

36th round (July-Dec '81) 47th round (July-Dec '91)

58th round (July-Dec '02)* with speech disability Urban

The graph shows that there has been a reduction in the proportion of persons in 2002 Rural th th (58 round of NSS) as compared to the results of the 36 round in 1981 in both the sectors (rural and urban). The prevalence of speech disability was more among males than among females in both rural and urban sectors as observed in all the survey years.

E10

Type and degree of speech disability: Table 5.13: Percentage distribution of persons with speech disability by type of disability for each sex and sector Type of speech disability Rural Urban Male Female All persons Cannot speak 49 45 45 51 48 Speaks only in single words 18 20 18 21 19 Speaks unintelligibly 14 15 15 14 14 Stammers 11 12 14 6 11 Speaks with abnormal voice 6 6 6 6 6 Any other speech defect 3 3 3 2 3 All including n.r. cases 100 100 100 100 100 Source: NSSO Survey on Disability (2002)

Nearly 50% of the persons with speech disability could not speak and nearly 20% of the speech disabled spoke only in single words. A higher percentage of disabled persons could not speak in rural areas as compared to the urban sector. Among disabled females, the problem of not being able to speak was more prevalent than males. But a higher proportion of disabled males stammered in contrast to proportion of disabled females. Causes of speech disability: Paralysis was found to be the single most major cause of speech disability ing for almost a quarter of all cases. Mental illness or retardation and voice disorders were reported among other common causes. However, contrary to the popular perception, hearing impairment was not reported as cause of speech disability in many cases. In more than 40% of cases the cause could not be specifically ascertained. Table 5.14: Percentage distribution of persons with speech disability by cause speech disability Cause of speech disability Rural Urban Male Female All persons Paralysis 23.9 25.0 24.3 24.2 24.2 Mental illness / retardation 7.9 10.0 7.5 10.3 8.5 Voice disorder 9.0 6.7 7.9 8.9 8.3 Injury including burns 5.1 6.7 7.2 3.0 5.6 Medical/ surgical intervention 2.0 4.4 2.5 3.1 2.7 Cleft palate/lip 1.5 2.1 1.2 2.4 1.7 Old age 1.4 1.0 1.0 1.7 1.3 Hearing impairment 0.9 0.1 0.1 0.2 0.3 Other illnesses 22.2 24.3 23.7 21.4 22.8 Other reasons 6.8 6.8 6.3 7.6 6.8 Not known 14.8 10.2 14.6 11.2 13.3 All (incl. not recorded cases ) 100.0 100.0 100.0 100.0 100.0 Source: NSSO Survey on Disability (2002)

Age at onset of speech disability: For more than a-third of the speech disabled persons, the age at onset was after 60 years, about 20% acquired disability in the age-group 45-49 years and more than 35% of speech disabled persons were disabled since birth. In rural sector, a higher proportion of persons were disabled since birth and in the urban areas, a higher proportion acquired it after the age of 45 years. A relatively higher proportion of females were speech disabled since birth and more males acquired it after the age of 45 years. E11

Table 5.15: Per cent distribution of persons 60 years and above with speech disability by age at onset of disability for each sex and sector Age at onset Rural Urban Male Female All persons Since birth 37.5 30.6 33.1 39.1 35.6 0–4 1.1 0.6 1.2 0.6 0.9 5–9 0.9 0.9 0.2 1.9 0.9 10 – 14 1.5 0.6 1.1 1.4 1.3 15 – 19 0.7 0.1 0.9 0.0 0.5 20 – 24 0.1 0.1 0.1 0.1 0.1 25 – 29 0.2 0.1 0.0 0.4 0.1 30 – 34 1.2 1.5 1.9 0.4 1.3 35 – 44 3.3 0.4 2.1 3.1 2.5 45 – 59 19.0 21.8 22.2 16.5 19.8 60 & above 34.5 43.4 37.1 36.7 36.9 total 100.0 100.0 100.0 100.0 100.0 Source: NSSO Survey on Disability (2002)

5.5 Loco motor Disability Prevalence of loco motor disability- comparison over NSS survey rounds: The prevalence of this particular disability was noticeably more in urban areas in comparison to rural, and also more among males than among females. Table 5.16: Prevalence rate (per 100,000 persons) of loco motor disability over NSS rounds sector NSS 36th round NSS 47th round NSS 58th round (July – December, 1981) (July – December, 1991) (July – December, 2002) male female persons male female persons male female persons rural 1047 597 828 1345 784 1074 1274 804 1046 urban 800 544 679 1170 728 962 1058 730 901

E12

Fig.5.12 Prevalence rate (per 100,000 persons) of locomotor disability obtained from NSS 36th,47th & 58th rounds by sector 1200

1074 1046

1000

828

800

901

962

679

600 400 200 0

36th round (July-Dec '81)

47th round (July-Dec '91)

Rural

58th round (July-Dec '02)*

Urban

It can be seen that, in both the rural and urban areas, the prevalence of loco motor disability in the year 1991 was much higher as compared to the rate in 1981. But thereafter it has shown marginal decline in 2002. Type of loco motor disability: About 45% of the loco motor disability was attributed to deformity of limb, more than 20% to dysfunction of ts of limb, another 15% to paralysis, 10% to any other deformity of body and 8% to loss of limbs. Deformity of limb was more prevalent in the rural sector whereas a higher percentage of persons were loco motor disabled due to dysfunction of ts of limb. In contrast to females, a higher percentage of males exhibited deformity or loss of limb. On the other hand, females suffered more with dysfunction of ts of limb. Table 5.17: Percentage distribution of persons with loco motor disability by type of disability for each sex and sector Type of loco motor disability Rural Urban Male Female All persons Deformity of limb Dysfunction of ts of limb Paralysis Other (deformity of body) Loss of limb All (incl. not recorded cases)

46 22 14 10 8

44 25 15 8 8

46 21 14 9 8

44 26 15 10 9

45 23 15 10 5

100

100

100

100

100

Source: NSSO Survey on Disability (2002)

Causes of loco motor disability: It could be seen that polio and injury other than burns were the two major causes of loco motor disability contributing more than 50% of cases. Out of the rural and the urban sectors, stroke, arthritis and injury other than burns were more prevalent in the urban area and polio was found more common in the rural area. The females, in comparison to males, acquired loco motor disability more due to arthritis, other illness and old age. On the contrary, among the various causes of disability, males suffered more due to polio and injury other than burns.

E13

Table 5.18: Per cent distribution of persons with loco motor disability by cause of loco motor disability for each sex and sector Causes of locomotor disability Rural Urban Male Female All persons 29.5 27.0 29.0 28.6 28.9 Polio Injury other than burns 25.6 27.1 29.5 19.9 26.0 Other illness 12.0 12.0 10.8 14.1 12.0 Stroke 6.6 8.2 7.1 6.8 7.0 Other reasons 4.6 4.1 4.2 4.9 4.4 Not known 4.7 3.1 4.1 4.7 4.3 Old age 3.5 3.1 2.0 5.9 3.4 Arthritis 2.9 3.5 2.2 4.6 3.1 2.4 2.3 2.3 2.6 2.4 Cerebral palsy Medical/ surgical intervention 2.0 2.6 2.2 2.0 2.1 Burns 2.0 1.8 1.9 2.1 1.9 Leprosy cured 0.8 2.9 1.5 1.2 1.4 Leprosy not cured 1.7 0.8 1.5 1.3 1.4 Cardio-respiratory disease 0.3 0.3 0.4 0.2 0.3 Cancer 0.3 0.2 0.3 0.3 0.3 Tuberculosis 0.3 0.3 0.4 0.2 0.3 Source: NSSO Survey on Disability (2002)

Age at onset of loco motor disability: More than 50% of the persons with loco motor disability acquired it after the age of 60 years, 28% in the age-group 45-49 years and only 5% were disabled since birth. In rural areas, the onset of disability was more likely since birth and in the early years of childhood as compared to the urban area. About 57% of the people with movement disability acquired disability after the age of 60 years in the urban areas, in comparison to 49% in the rural areas. As compared to females, males showed a higher proportion of disability in the age-group 5-59 years. Table 5.19: Per 1000 distribution of persons 60 years and above with loco motor disability by age at onset of disability for each sex/ sector Age at onset Rural Urban Male Female All persons Since birth 59 37 54 53 54 0–4 19 24 20 20 20 5–9 18 10 20 11 16 10 – 14 14 14 14 14 14 15 – 19 8 6 11 4 8 20 – 24 12 16 18 6 13 25 – 29 7 6 11 3 7 30 – 34 20 13 21 14 18 35 – 44 61 38 66 42 55 45 – 59 288 269 291 274 284 60 & above 492 567 472 557 511 total 1000 1000 1000 1000 1000 Source: NSSO Survey on Disability (2002)

E14

Fig. 5.13 Age at onset of disability in movement 60.0 50.0 40.0

30.0 20.0

Locomotor

10.0

0.0

Age at onset of disability

Type of aid/ appliances used by loco motor disabled: About a third of the persons with loco motor disability used crutches, 11% used calipers, nearly 8% acquired from wheelchair or artificial limbs, 6% used tricycle, 5% had splint and only 1% had spinal brace. More than 25% were using some other aid/appliance apart from the above mentioned items. Table 5.20: Percentage distribution of persons with loco motor disability persons by type of aid / appliance acquired for each sex and sector Type of aid/ appliance Crutch Callipers Wheelchair Artificial limbs Tricycle Splint Spinal brace Others All

Rural 33 9 8 7 7 5 1 29 100

Urban 32 15 8 9 5 4 2 24 100

Source: NSSO Survey on Disability (2002).

E15

Male 34 10 8 8 7 5 1 25 100

Female 30 12 8 5 4 5 1 33 100

All persons 33 11 8 7 6 5 1 27 100

Chapter 6 Socio-economic Profile of Disabled Persons in India

The existing data available indicates that people with disability are subject to multiple deprivations. As compared to the general population, they suffer more from poverty, low literacy, unemployment, which put them further behind. The differences in access to basic services and degree of social marginalisation among persons with different types of disability are also striking, and they get further magnified, with differences on of gender, caste, rural/ urban background etc. It is therefore, imperative to study the socio-economic profile of the disabled population for any meaningful policy intervention. With population Census and NSSO surveys revealing different aspects of the disability scenario, the socioeconomic profile of the disabled obtained from these two sources are being discussed separately.

A. Findings of Population Census 2001 More than 98% of disabled persons lived in normal households, while only 1.1% were in institutional households and remaining 0.2% were houseless. Again out of the 193 million households in India, a little less than 10% households reported to have one or more disabled . On the other hand 17% of institutional households and 8% of houseless households had disabled member(s). As already discussed in the previous section, the prevalence of disability was found to be more in rural areas (2.2%) as compared to urban (1.9%) and more among males (2.4%) than among females (1.9%). Among social groups it was observed to have higher incidences among Scheduled Castes (2.2%) and relatively lower among Scheduled Tribes (1.9%) as compared to others. 6.1 Disabled population in different age-groups: Census 2001 In general, number of disabled persons increased with age broadly in the age group 0-19 years and thereafter as age increased the number of PWD decreased gradually for both males and females. More than 35% of the disabled persons (more than 7.5 million in number) were of age less than 20 years and another 15% were of age between 20 to 30 years. Less than 20% of disabled males and females were of age more than 50 years. Thus, it is noted with due concern that majority of the disabled persons in India were reported to be very young. Also, it is important to keep in mind this demographic profile of the disabled population as indicated in the figure below, while studying their socio-economic outcomes or planning for suitable policy interventions.

F1

Estimated number of disabled (in lakhs)

Fig.6.1: Estimated number of disabled males and females in different age-groups in Census 2001 30

26

25 19

20 15

19

6

5

Female

17 15

13

12

10

Male

12

11

9

9

10 8

6

9

6

6 2 2

0

6.2 Literacy and level of 0-4 education: Census 2001 5-9 10-19 20-29

30-39

40-49

50-59

60-69

70-79

80-89

1 1 90+

Education is critical in expanding opportunities in life for any population, more so for the differently-abled Age-group (year ones. But as the figure below indicates majority of the disabled persons in our country (51%) were not literate. For the population as a whole, as well as in any of its sub-category, literacy among disabled persons was invariably much lower than that among respective general population. The gap was significantly large in case of female population with only 37% of female disabled persons reporting literacy. This was also true in rural areas (44% literates) where three-fourths of disabled persons live. Fig.6.2 Percentage of literates in the general population vis-a-vis in disabled population

80

69

70

60

55

49

50

49

64

63

58 45

44

37

40 30

20 10

Disabled popl

General popl

Disabled popl

General popl

Disabled popl

General popl

Disabled popl

General popl

General popl

Disabled popl

0

F2 Total

Rural

Urban

Males

Females

Further, there were major differences across different types of disability, the worst positioned were those with speech and mental disability with only about one-third of them being literate.

Percentage of disabled persons

As fig.6.3 indicates, there were differences with respect to level of education even among the literates for persons with different types of disability. Only about 25% of persons with speech, hearing and mental disability completed at least primary education. The situation was little better among persons with visual and movement disability with 34% of visually disabled and 40% of persons with loco motor disability having completed primary level of education or above. Across all types of disability only 3% were of level graduate and above and another 10% were of level secondary or higher secondary. In cases of speech and hearing disability, only 1% reported to have graduation and another 6% completed secondary level. Fig 6.3: Percentage Distribution of Disabled Persons by Level of Education 70 60 50 40 30 20 10 0

Total

In seeing

In speech

Illiterate

51

50

64

In hearing In movement Mental 57

43

62

Literate but below primary

13

13

13

15

14

11

Primary but below middle

13

13

10

12

15

10

Middle but below matric/secondary

8

8

5

6

10

6

Matric/Secondary but below graduate

10

10

6

6

12

7

Graduate and above

3

3

1

1

3

2

6.3 Educational attendance of children with disability: Census 2001 In respect of current level of attendance in educational institutions of disabled children, only 58% of disabled children aged 6-10 years and 63% of children aged 11-14 years were found to be attending schools, the corresponding poportions for the general population were much higher at 69% and 75% respectively. Even in urban areas, the gap between general and disabled children was sizeable. Among disabled male children 60% in the age-group 6-10 years and 67% in the age-group 11-14 attended school. For disabled females the respective proportions were still lower at 55% and 58% respectively. The gap between general population and disabled population in school attendance was sizeable not only in rural areas but also in urban areas. In urban areas among disabled children 64% of those of age 6-10 years and 69% of age 11-14 years attended education. For the general population 79% of children aged 6-10 years and 84% of age 1114 years were in school. F3

Females Males

11-14 yrs

Urban

11-14 yrs

11-14 yrs

All

11-14 yrs

Rural

Fig.6.4: Percentage of children attending education 58

69

55

6-10 yrs

66 67 60

6-10 yrs

79

72 69

84

64

6-10 yrs

79

61 56

6-10 yrs 11-14 yrs

66 63

58

6-10 yrs Disabled population

71

75

69

General Population

Then there were further disparity among children with various types of disability, especially for the children with speech and mental disability. More than 55% of children with speech disability and more than 60% of children having mental disability were not going to school even in the prime school-going-ages, i.e. age 6 to 14 years. Fig.6.5: Percentage of disabled children in different age-groups attending educational institutions 80

72

70

65

63 58

60 50

20

44

38

30

39

35

35

25

20

16

58

44 46

43

40

68

63 65

18 13

12

12

15

10 0 All

In seeing

In speech

In hearing

In movement

Mental

Type of Disability 5 yrs 6-10among yrs disabled11-14 yrs 15-19 Among states also there were wide gaps in literacy population from 37% inyrs Bihar to 67% in Kerala with almost half of the states having majority of their disabled persons not literate. Even in the best practice states like Kerala, literacy rate among disabled persons did not exceed two-third.

F4

Fig. 6.6: Percentage of Literates among Disabled Persons in Major States 80 65

70 60 50 40

37

40

42

44

45

45

45

48

49

49

49

50

50

50

52

52

53

54

58

67

59

30 20 10 0

6.4 Employment and Activity Status: Census 2001 If one studies the employment status of population on the age-group 15 – 59 years, it can be observed that invariably the proportion of main workers and marginal workers were much lower among disabled population as compared to the general population. Accordingly, the percentage of non-workers among disabled was relatively more as compared to that among general population. More than a-third (36%) of disabled males and more than two-third (68%) of disabled females of age 15 to 59 years were non-workers, i.e. not economically active. On the other hand among general population, only 19% of males and 60% of females were non-workers. Fig. 6.7: Percentage of main workers, marginal workers & non-workers among persons of age 15 to 59 years 80

71

68

70

60 50

49

48 40

60

55

39

40

36

30

19

20

13 11

23

19

17

9 9

10

13

0 Main worker

Marginal Non-worker worker

Main worker

persons

Marginal Non-worker worker

Main worker

Marginal Non-worker worker

Male General population

F5

Female Disabled population

Then there were further differences among different types of disability with majority of persons with speech or movement disability and almost three-fourth of persons with mental deficiencies being non-worker. Fig.6.8: Percentage distribution of disabled persons in the age-group 1559 yrs by work status for each type of disability 100% 90% 80%

39

49

39

51

56

70%

72

60%

12

50%

15

11

12

40% 30%

49

40

20%

10 7

45

37

34 21

10%

0% All

In seeing

Non-workers

In speech

In hearing

In movement

Marginal workers

Mental

Main workers

Fig. 6.9: Per cent distribution of disabled males/females by work status for each type of disability in the age-grp 15-59 yrs

21

24

36

38

47

9

62

68 9

68

12

59 75

65 83

11 9

In seeing

Main workers

In hearing

Marginal workers

F6

11 28 14

In movement Non-workers

8

Males

9

Females

22

Males

Females

In speech

7 44

18

Males

Males

Females All

Females

23

19

19

14

Females

51

Females

64

15 13

Males

70 55

Males

100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0%

Mental

The fig. 6.9 depicts that across all types of disability there was wide gap in the proportion of disabled males and females working. On the whole 55% of disabled males were main workers, 9% marginal workers and 36% non-workers. Among disabled females the respective percentages were 19% main worker, 13% marginal worker and remaining 68% non-workers. 6.5 Activity of non-workers: Census 2001

Fig.6.10: Per cent distribution of disabled non-workers by their activity for each type of disability 100% 90% 80% 70% 60%

52

47

52

54

53 69

50% 40% 30%

15

19

14 17

10

20% 10%

25

27

27

19

27

10 13

0% Total

Others

In seeing

In speech

In hearing

Beggar, Vagrants,etc.

Pensioner

Dependent

In movement

Mental

Household duties

Student

In general, out of the total disabled non-workers, about 50% of the non-workers were dependent, about 25% were students, about 15% were engaged in household duties, 2% were pensioners, 1% of them were beggars, vagrants, etc and 5% were categorized as others. Again, out of the total disabled non-workers, about 45% were visually challenged, 30% possessed disability in movement, 12% were mentally disabled, 8% had disability in speech and 5% had disability in hearing. 73% of the total disabled non-workers belonged to rural sector and 27% in the urban sector. The total disabled non-working population consisted of 52% females and 48% males. In the general population among the non-workers, 49% males and 26 % of females were students. As against this among disabled non-workers 31% males and 19% females only were students. Also, there were a significantly higher percentage of dependents among the disabled non-workers as compared to nonworkers in general population. In the general population among non-workers, 42% of males and 33% of females were dependants while among disabled non-workers, 56% of males and 49% of females were dependants. F7

Fig. 6.11: Per cent distribution of population by activity of non-workers 100%

5

5

6

4

7

4

90% 80%

33

37

70%

42

49

52

60% 50%

56 2

22

36

40% 2

15

30%

26

49

20%

36

31

25

10%

26

19

0% General popl

Disabled popl

General popl

Persons

Students

Disabled popl

General popl

Males

Household duties

Dependents

Disabled popl

Females

Pensioners

Beggars, Vagrants etc.

Others

6.6 Marital Status of disabled persons: Census 2001 On comparing the marital status of general population and the disabled population, it was found that in general, a higher percentage of disabled persons were never married (34%) as compared to the general population (25%) and 60% of disabled persons were married in comparison to the 71% of the married persons in the general population. More specifically, among males, 66% in the general population and 58% among the disabled were married. A similar trend was observed in the marital status of females. However, while discussing about marital status, instead of general population it is better to consider population of age 15 and above as only 1% of the total disabled persons were married in the age-group 0-14 years. Fig.6.12: Per cent distribution of disabled persons of age 15 to 59 years by marital status for each type of disability

100%

Divorced/ Separated

80%

45 60

60%

52

38

Widowed

63

72

40% 49

20%

34

43

53

27

22

0% All

In seeing

Married

In speech

In hearing

type of disability

F8

In movement

Mental

Never Married

In the age-group 15-59 years, about 34% of the total disabled persons were never married, 60% were married, 5% were widowed and 1% were divorced or separated. Among disabled males, 39% were never married, 58% were married, 2% were widowed and 1% were divorced/separated. Among disabled females, 28% were never married, 62% were married, 8% were widowed and 2% were divorced/ separated. A higher percentage of persons with disability in mental, speech, and movement were never married. But in case of disability in seeing and hearing, higher percentage of persons were married.

Fig. 6.13: Per cent distribution of disabled males & females of age 15-59 years by marital status for each type of disability

100% 90% 80% 70%

37

44 58

60%

62

48

70

52 63

74

50%

40

50 63

40% 58

53 43

39 28

10%

45

40

Females

20%

Males

30%

33

27

46

20

16

All

In seeing

Divorced/Separated

In speech

Widowed

In hearing

In movement

Married

Females

Males

Females

Males

Females

Males

Females

Males

Males

Females

0%

Mental

Never Married

6.7 Distribution of disabled persons by social group: Census 2001 Among the disabled, 7% belonged to ST and 17% to SC while in the general population 8% were from ST and 16% from SC. Thus, prevalence of disability among SC population (2.23%) was more as compared to that among general population (2.13%) while among ST the prevalence of disability was much less (1.93%). Among the disabled persons belonging to ST, proportion of persons with visual, speech and hearing disability was relatively more and those with loco motor or mental disability was relatively less as compared to general population. On the other hand among disabled persons belonging to Sc category these proportions were more or less same as those among general population.

F9

B. Findings of NSSO Survey on Disability (2002) From the dataset obtained through the dedicated Disability Survey of NSS, last conducted in the year 2002, a more comprehensive socio-economic profile of the disabled persons emerges. 6.8 Age-group distribution of disabled population: NSSO survey 2002 We may next study the age distribution of the disabled population separately for males and females before analyzing their socio-economic profile. Almost a-third of the disabled population located by this survey were of age less than 20 years. Another 30% of disabled females and about 20% of disabled males were of age more than 60 years. Remaining 47% of males and 39% of females with disability belonged to the agegroup 20 to 59 years. This information would be extremely useful for the purpose of deciding programme interventions for the disabled persons. However there has been a marked basic difference from the age distribution of disabled persons obtained through Population Census 2001, which points to the conceptual difference in the definitions of disability of the two methods.

Percentage of disabled in the age-group

Fig. 6.14 Percentage distribution of disabled persons across agegroups 30

25 20

male

female

15 10 5 0

6.9 Social Group of disabled households: NSSO survey 2002 In the NSS survey it was found that although there was no major difference between general households Age-group(years) and the households with disabled member(s) in respect of percentage share of various social groups in rural India, in urban areas there was some perceptible difference. As against 15% SC, 33% OBC and 48% ‘Others’ social group among general population, 18% were SC, 38% were OBC and only 41% were ‘Others’ among households with disabled member(s). F10

Fig. 6.15 Percentage distribution of households by social group 100 90 80

26

26

41

48

70

60 50

41

42

40

38

33

30 20

22

23

10

10

9

0 All households

Households with disabled persons

All households

Rural

Others

18 3

15 3

Households with disabled persons

Urban

OBC

SC

ST

6.10 Level of Living of disabled population: NSSO survey 2002 In the NSSO 2002 survey, 8.4% of rural households and 6.1% of urban household reported disability of one or more of their in the survey. In NSSO surveys information on monthly per capita expenditure is collected for each household reporting disability or otherwise. This can be used as an useful indicator to study the level of living of households with one or more disabled vis-à-vis that of all households in general. In both rural and urban areas majority of households reporting one or more disabled belonged to the poorest three expenditure classes while they consisted 12% of all rural households and less than 10% of all urban households. These households were thus put into disadvantage both in respect of disability and poor level of living. The average size of such households is also a matter of concern. Further, almost 25% of households reporting disability of member(s) as against less than 3% of general households were in the poorest expenditure class with an average monthly per capita expenditure less than Rs. 225 in rural areas and less than Rs. 300 in urban areas. However it is difficult to comment on whether in such cases disability was a cause or the effect of poverty. The proportion of households reporting disability falls steadily as one moves up along the higher MPCE classes. The average household size also was found to be decreasing with increase in the level of living (MPCE). Further, of the households reporting disability in any expenditure class, more than 90% reported disability of only one member of the household, 6 to 8% in the rural area and nearly 5 to 9% of households in the urban areas reported to have two disabled . Only in 1% or less of the households, three or more disabled could be found in both rural and the urban sectors. F11

Table 6.1: Percentage of households reporting disability and their distribution in the household in each monthly per capita expenditure class (Rs.) by number of disabled persons in the household monthly per capita expenditure class (MPCE in Rs.) Rural 0 - 225 225-255 255-300 300-340 340-380 380-420 420-470 470-525 525-615 615-775 775-950 950+ all 0- 300 300-350 350-425 425-500 500-575 575-665 665-775 775-915 915-1120 1120-1500 1500-1925 1925+ all

average hh. size (0.0)

% of all hhs in the MPCE class

6.6 6.2 6.2 6.6 6.1 5.5 6.2 5.1 5.1 5.0 4.7 3.9 5.7

2.9 2.9 6.2 7.5 8.3 8.6 10.2 10 12.5 13.3 7.4 9.8 100

6.3 6.8 6.0 5.7 6.7 5.3 5.5 5.5 4.7 4.5 4.5 3.7 5.5

1.9 2.1 5.6 6.2 8.9 8 8.8 9.2 12.7 14.3 9.1 13.2 100

% of hh. in the MPCE class reporting disability

24.7 17.9 16.4 9.5 10.4 10.7 7.1 9.8 5.6 5.3 3.8 3.1 8.4 Urban 25.6 13.0 11.9 17.2 3.6 8.8 7.7 5.5 4.3 3.5 1.6 1.7 6.1

number of hhs. with disabled persons 1

2

3 or more

total

92.6 91.9 91.4 91.4 91.9 92.4 92.6 92.4 93.1 93.5 93.4 93.1 92.3

6.7 7.1 8.1 7.8 7.5 6.9 6.8 7.0 6.5 6.0 6.2 6.2 7.0

0.7 1.0 0.5 0.7 0.6 0.7 0.6 0.6 0.4 0.5 0.4 0.8 0.6

100 100 100 100 100 100 100 100 100 100 100 100 100

90.8 90.4 91.0 91.0 90.8 93.7 92.4 93.1 93.5 94.3 94.7 93.4 92.3

8.2 9.3 8.5 8.5 8.6 5.8 7.0 6.3 6.1 5.4 4.9 6.6 7.2

1.1 0.2 0.4 0.5 0.6 0.5 0.6 0.6 0.4 0.3 0.5 0.0 0.5

100 100 100 100 100 100 100 100 100 100 100 100 100

Source: NSSO Survey on Disability (2002)

6.11 Literacy among the disabled: NSSO survey 2002 Literates, for the purpose of this survey, were those who could read and write a simple message with understanding. For those considered to be literates, information on specific level of general education completed was ascertained. F12

Fig. 6.16 Per cent distribution of persons (age 7 years & above) by level of literacy 100%

12

7

18

90%

33

80% 70%

35 48

43

60% 50%

48

40% 58

30% 20%

40

39 19

10%

0%

General Disabled popl popl

General Disabled popl popl

Rural not literate

Urban

literate below secondary

secondary and above

In general, about 55% of the persons having any disability were not literate, 25% were literate up to primary level, 11% up to middle level and 9% were literate up to secondary level and above. Of the disabled persons of age 7 years and above, 58% in the rural areas and 39% in urban areas were not literate, another 35% in rural and 43% in urban were literate but below secondary and only 7% rural disabled and 18% urban disabled persons were of educational level secondary and above. As expected, literacy level of disabled persons was higher in urban areas (60%) as compared to rural areas (40%) because most of the educational institutions, especially special schools for disabled, are located in urban centers. Nongovernmental organizations working for education of disabled are also located in urban centers. However, the gap between proportion of literates among general population and that among disabled persons were wide in both rural and urban areas. Then there has been further disparity in literacy among persons suffering from different types of disability. It could be seen that as high as 87% of persons with mental retardation (almost 90% in rural and more than 80% in urban areas) were not literate. Among persons with visual disability about 75% were not literate and there was major rural-urban difference (with 80% not literate in rural areas as compared to 55% in the urban areas). Even for speech and hearing disability 70% of persons in rural areas and 50% in urban areas were unable to read and write. Further, 59% of the persons with mental illness and 44% with loco motor disability were not literate. Literacy level was relatively high among movement disabled as compared to other disability categories, more so in urban areas. This is due to the reason that they face only one barrier i.e. mobility and they can easily be incorporated in regular school. Neither special teacher nor special books and other facilities are needed for them. Movement barriers can be easily removed by creating ramps in schools. F13

Fig.6.17 Per cent distribution of disabled persons of age 7 yrs and above by level of general education for each type of disability 100%

3 11

90%

4 5

9 10

4 5

14

80%

4 6

5 7

11

17 23

70%

9

13 14

24

22

26

60%

29

50% 86

40%

77

30%

74 64

59

66 54 44

20% 10% 0%

literate secondary & above

literate middle

literate upto primary

not literate

In state-wise table S6 in Appendix-I it can be observed that among the major States, the lowest literacy rate among disabled persons was found in Bihar (34%), Orissa and Andhra Pradesh (36% in both the states). The proportion of literates among the disabled persons of age 5 years and above was highest in Kerala (67%). 6.12 Enrolment status of disabled children: NSSO survey 2002 Fig.6.18: Per cent currently enrolled among disabled persons(age 5-18 yrs) with different types of disability 70 60 47.5

50

44.4

40 30 20 10.6

10 0.6

0

rural

urban

rural

currently enrolled in ordinary school mental retardation

mental illness

blindness

F14

urban

currently enrolled in special school low vision

hearing

speech

locomotor

any disability

The proportion of disabled children currently enrolled was found to be low (less than 50%) in general for almost all types of disability excluding loco motor disability especially in the rural sector. Among mentally disabled children the current attendance in ordinary schools was around 10% in both rural and urban sector. Only negligible proportion of disabled children was found to be attending special schools in rural sector, which may be due to non-availability of such schools in the villages. In urban area, in case of mental retardation, a higher proportion of persons were enrolled in special schools rather than in the ordinary schools. Persons with low vision and locomotor disability were largely enrolled in ordinary schools. However in case of blindness and speech impairment, a sizeable proportion of disabled children in urban areas were found to be enrolled in special schools. Proportion of disabled females (age 5-18 years) enrolled in either ordinary or special schools were invariably lower than that of their male counterpart. 6.13 Reasons for non-enrolment in special schools: NSSO survey 2002 Disabled persons of age 5 – 18 years who reported as not enrolled in any school were asked about the reason for non-enrolment in special school. 32% identified disability itself as the main reason, another 15% were not aware of special schools and for another 14% parents were not interested. The figure tells about the attitude of the society to the need of getting disabled children in schools even in prime school going age.

Fig.6.19 Percentage of disabled children (age 5-18 yrs) by major reasons for non-enrolment in special school other reasons

11.4

for attending domestic chores

0.6

difficulty in getting ission

0.6

for participation in household economic activity

1.6

expensive

4.3

for other economic reasons

5

school far away

6

parents not interested

14

school not known

15

due to disability

32 0.0

5.0

10.0

15.0

20.0

25.0

30.0

35.0

6.14 Attendance in vocational course: NSSO Survey 2002 In NSSO 2002 survey, along with the general educational level of the disabled, information relating to whether or not any vocational course (engineering or non-engineering) had been completed by them was also collected. Among persons with any disability aged 10 and above, it was found that 1.5% in rural areas F15

and 3.6% in urban areas attended vocational courses. The proportion was higher for persons with loco motor disability, especially in urban areas. Fig. 6.20 Per cent of disabled persons aged 10 & above who attended any vocational course

4.3 rural

urban 3.6

3.2 2.5

2.4

2.3

2 1.5

1.8 1.1

1 0.5

0.4

Mental retardation

1.5

1.4

1.3

Mental illness

Blindness

Low vision

Hearing

Speech

Locomotor Any disability

6.15 Broad usual activity status of disabled persons: NSSO Survey 2002 Usual activity of the disabled: The usual activity status of an individual is the activity situation obtaining for the person in respect of his/her participation in economic or non-economic activities during the reference period of 365 days preceding the date of survey. Adopting a relatively long time criterion, two major activity statuses are identified as: A. In the labour force: 

working or being engaged in economic activities (work) (employed);

 not engaged in economic activities (work) but available for work (unemployed) . B. Out of labour force: 

not engaged in work and also not available for work .

Within the labour force, again a relatively long time criterion is adopted to identify the statuses as ‘working (employed)’ and ‘not engaged in economic activities (work) but available for work (unemployed)’. In general, only about 25% of the disabled population was found to be employed, 1% were unemployed and the rest were out of labour force. Among males, 36% were found to be employed while among females, only 10% were employed and 89% were out of labour force. In the rural sector, 26% of the disabled persons were employed. Among rural disabled males 37%, and among rural disabled females 11% only were employed. In the urban sector these proportions of employed were still lower for both males and F16

females. About 35% of the urban disabled males and only 9% among the urban disabled females were employed. Fig.6.21: Per 1000 distribution of disabled persons by broad usual activity status for each type of disability

100 90 80 70

65

60 50

94

87

81

73

71

74

26

28

26

91

40 30 20

34

10 0

6

13

employed

19 9

unemployed

out of labour force

More than 90% of the disabled persons with mental retardation or blindness were out of labour force. So were more than 85% of persons with mental illness and about 80% of persons with low vision. Nearly 70% of the persons with speech or locomotor disability and about 65% of the persons with hearing disability were out of labour force too. Table 6.2a: Per 1000 distribution of disabled persons by broad usual activity status for each type of disability, sex and sector rural urban rural+urban emplo unempl out of empl unemplo out of empl unempl out of type of disability yed oyed labour oyed yed labour oyed oyed labour force force force male mental retardation 89 0 911 58 1 941 81 1 919 mental illness 199 2 799 99 4 897 176 2 821 blindness 139 4 857 193 5 802 149 4 847 low vision 339 5 655 291 7 702 331 6 663 hearing 530 4 466 347 17 635 492 6 501 speech 391 7 602 249 16 734 356 9 635 locomotor 387 11 602 404 22 574 391 14 595 all disabled 369 8 622 347 18 635 364 11 625 F17

Table 6.2b: Per 1000 distribution of disabled persons by broad usual activity status for each type of disability, sex and sector rural urban rural+urban emplo unempl out of empl unemplo out of empl unempl out of type of disability yed oyed labour oyed yed labour oyed oyed labour force force force female mental retardation 20 0 980 5 1 994 16 0 984 mental illness 59 0 941 15 0 985 49 0 951 blindness 43 1 956 33 3 963 41 1 958 low vision 73 0 927 51 0 949 69 0 931 hearing 198 0 802 101 3 896 177 1 822 speech 143 3 854 64 7 929 125 4 871 locomotor 98 4 898 107 5 888 100 4 896 all disabled 109 2 889 87 4 909 104 3 893 Source: NSSO Survey on Disability (2002)

In general, nearly 70% of the disabled persons were out of labour force, more than 30% were employed about 1% were unemployed. Out of the persons employed, about 13% were self-employed in agriculture, 10% were casual labourers, 5% were self-employed in non-agricultural activities and only 4% were regular employees. Among the disabled persons who were out of labour force, 5% attended educational institution and 15% attended domestic duties. Table 6.3: Percentage distribution of disabled persons of age 15 years and above by usual activity status for each type of disability usual activity status Type of disability

Mental retard. Mental illness Blindness Low vision Hearing Speech Locomotor Any

employed selfselfemployed employed regular in in non– employee agriculture agriculture

1.5 3.9 4.5 8.7 14.3 9.7 15.2 12.6

3.7 3.2 1.6 3.4 7.2 10.6 5.3 5.2

0.4 1.0 1.0 0.9 2.4 3.0 5.2 3.7

not in labour force casual total labourer

3.2 5.8 2.6 6.7 16.0 17.0 9.1 9.6

8.7 13.9 9.7 19.7 39.8 40.2 34.8 31.1

unemplo attended attended begg yed educational domestic ar institution duties

0.1 0.2 0.3 0.3 0.4 1.1 1.3 0.9

2.7 1.2 1.3 1.3 1.7 4.4 7.1 4.9

5.9 8.7 8.2 16.4 21.8 19.4 14.8 15.2

0.3 0.4 1.3 0.7 0.2 0.3 0.9 0.7

others

82.3 75.6 79.1 61.6 36.1 34.6 41.3 47.2

total

100 100 100 100 100 100 100 100

Source: NSSO Survey on Disability (2002)

Among different types of disability, nearly 40% of persons with speech or hearing or loco motor disabilities were employed while in case of mental retardation or blindness less than 10% and among persons with mental illness or low vision, less than 20% were employed. F18

In general, nearly 55% of the disabled males working were involved in the primary sector, 17% in secondary sector and 28% in the tertiary sector. Out of the total disabled females, more than 60% were involved in the primary sector, 16% in the secondary sector and 22% in the tertiary sector. In the rural areas, nearly 70% of the disabled males or females working were involved in the primary sector only. About 12-13% of the disabled males as well as females were involved in the secondary sector. 20% of the males and 15% of the females were in the tertiary sector. In the urban areas, about 10% of the disabled males and females working were involved in the primary sector. 30% each of the disabled males and females worked in the secondary sector. Nearly 60% of the disabled males and 53% disabled females were engaged in the tertiary sector. Table 6.4: Number of persons who were working before the onset of disability per 1000 disabled persons of age 5 years and above for each type of disability Type of disability Mental retardation Mental illness Blindness Low vision Hearing Speech Loco motor At least one disability

Rural

Urban

46 533 567 634 528 100 368 389

Males

21 398 424 455 429 65 322 311

46 556 585 670 569 104 402 406

Females 28 424 501 546 443 74 283 323

All persons 39 505 540 603 509 92 357 372

Source: NSSO Survey on Disability (2002)

Onset of disability in a person who was usually working may sometimes lead to loss of work or change of work. Also, the number of persons working before the onset of disability depends upon the age of onset of disability. Accordingly, only 4% of the persons with mental retardation and 9% of the persons with speech disability were working before acquiring disability. On the other hand, 36% of the persons with loco motor disability, more than 50% of the persons with mental illness, or with blindness, or hearing disability and more than 60% of the persons with low vision were working before they became disabled. It is worthwhile to note that since mental retardation and speech disability were mostly acquired since birth or in the agegroup 0-4 years, a lower proportion was found to be working after the onset of disability. On the contrary, in case of the other types of disability the age of onset is generally after 45 years, and thus a higher proportion of disabled persons were reported to be working before acquiring disability. 6.16 Marital status of disabled persons: NSSO Survey 2002 In general, among the disabled males of all age, 47% were never married, 45% were married, 7% were widowed and 1% got divorced or separated. Among the disabled females, 39% were never married, 31% were married, 28% were widowed and 2% got divorced or separated. As compared to the other types of disabilities, more than 90% of the persons with mental retardation never got married. More than 70% of the males faced with speech disability and nearly 70% of the females having disability in hearing were not married. F19

Fig. 6.22 Percentage distribution of disabled persons of all age by marital status for each type of disability

2 16

100% 90%

2 1 5

7 9

80% 70%

1

39

42

2

2 4

1 11

23

21

41

37

39

60%

1

42

50%

92

39

40% 30%

72

47

44

20%

45

46 33

21

10%

12

0%

Divorced/Separated

Widowed

Married

Never married

Fig. 6.23 Per cent distribution of disabled persons of ages 15 years and above by marital status

100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0%

20

8

19

20 36

50

57

47

49 39

28

33

32

22

29

Even in the marriageable age category and above), almost a-third of disabled males and 22% Rural (15 yearsUrban Male Female All persons disabled females remained unmarried. The proportion was more in urban (32%) areas than in rural(28%).

Divorced/Separated

F20

Widowed

Married

Never married

6.17 Living arrangement of disabled persons: NSSO Survey 2002 Information on living arrangement of the disabled persons was collected to know whether they were living alone or with spouse only or with spouse and other of the household. It was found that, in general, more than 90% of the disabled persons were not living alone, about 5% were living with their spouse and only 3% were living alone. Among the different types of disabilities, in case of mental retardation, more than 99% of the disabled persons were living with spouse and/or others. In case of mental illness about 97% were not living alone and only 3% were living alone. In case of visual disability, nearly 95% of the disabled persons were living with others and 5% were living alone. In case of hearing disability, 96% of the disabled persons were living with others and 4% were living alone. In case of speech disability almost 98% were not living alone and only 2% were alone. Lastly in case of locomotor disability, about 97% of the disabled persons were living with others and 3% were alone. Table 6.5: Percentage distribution of disabled persons by type of living arrangement in each type of disability Type of disability Mental retardatn Mental illness Blindness Low vision Hearing Speech Locomotor All disabled

Living alone 0.3 3.1 4.9 6.1 4.0 1.0 2.6 3.1

Rural Living with spouse only0.4 4.4 8.0 9.7 6.7 2.6 5.2 5.5

Living with spouse &/or 99.2 others 92.2 87.2 84.0 89.1 96.4 92.1 91.4

Living alone 0.1 1.9 5.5 4.7 5.3 3.8 2.8 3.3

Urban Living with spouse only0.3 3.2 5.7 5.0 6.0 1.5 4.5 4.4

Living with spouse &/or 99.5 others 94.5 88.8 90.2 88.7 94.6 92.5 92.2

Rural+Urban Living Living Living with with alone spouse spouse only0.4 99.3 &/or 0.3 others 2.9 4.2 92.7 5.0 7.5 87.4 5.9 8.8 85.1 4.3 6.6 89.0 1.7 2.3 95.8 2.7 5.0 92.2 3.1 5.2 91.5

Source: NSSO Survey on Disability (2002)

6.18 Assistances received by disabled persons from Govt. or otherwise: NSSO Survey 2002 Table 6.6: Percentage distribution of disabled persons of age 5 years and above who have received any aid/help by type of aid/help received Populati % disabled % distribution of disabled persons receiving any aid/help on aged 5 years received govt. aid/help for receiv category & above who ed educa vocational aid/ corrective govt./semi other govt. total other received any aid/help tion training appliance surgery -govt. job aid/help aid or help all Rural Urban Male Female All

11 15 12 11 12

7 14 8 9 9

1 3 2 2 2

24 18 22 21 22

Source: NSSO Survey on Disability (2002)

F21

4 6 4 5 5

3 4 4 2 3

52 37 47 50 48

90 82 87 88 87

10 19 13 12 13

100 100 100 100 100

In general, about 12% of the disabled persons of age 5 years and above reported to have received any aid or help. Among the disabled in the urban areas 15% got aid/ help as compared to only 11% in the rural. Nearly 90% of such aids/assistances were received from government. Out the disabled persons receiving aid/ help, more than 20% received help for aid/ appliance. Nearly 10% obtained help for education and 5% for corrective surgery (more so in urban areas). For the disabled males and females the experience reported to be more or less same. Table 6.7: Percentage distribution of disabled persons of age 5 years and above who have received any aid/help by type of aid/help received for each type of disability Type of disability

Mental retardn Mental illness Blindness Low vision Hearing Speech Locomotor Atleast one disability

% disabled aged 5 years & above who received any aid or help 6 5 16 11 6 10 13 12

disabled persons receiving any aid/help received govt. aid/help for educat vocational aid/ correct govt./ other ion training appliance ive semigovt. surgery govt. aid/ job help

received other total aid/ help

all

6 3 13 2 1 16 8

1 2 3 1 2 1 1

16 24 15 27 36 13 23

3 3 11 14 3 2 3

2 3 2 2 3 1 4

61 49 46 33 40 47 49

89 84 89 79 86 80 88

11 16 11 21 14 20 12

100 100 100 100 100 100 100

9

2

22

5

3

48

87

13

100

Source: NSSO Survey on Disability (2002)

Among persons with different types of disability, relatively higher proportion of persons with blindness (16%) and loco motor disability (13%) received any aid or help, followed by those among persons with low vision and speech disability (about 10% each). Only about 5% of persons with mental or hearing disability got any aid/ help. Persons with blindness and speech disability obtained more help from govt. for education as compared to other disabilities. Again those disabled in hearing (as also persons with low vision, mental illness and locomotor disability) received more help from govt. for aids or appliances. More than 10% of the visually impaired persons getting assistance obtained so for corrective surgery. From the discussion above, it is quite clear that govt. as also non-govt. sources need to extend more assistance through more aid/ help to the disabled persons besides more comprehensive and equitable provision for inclusive education and employment.

F22

Chapter 7 International Scenario

7.1 Global Awareness The Preamble of the Charter of United Nations affirms the dignity and worth of every human being and gives primary importance to the promotion of social justice. Persons with disabilities are, de-facto, entitled to all the fundamental rights upheld by the Charter. Article 25 of the Universal Declaration states that each person has, the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in the circumstances beyond his control. The United Nations declared 1981 the International Year of Disabled Persons, and adopted the World Program of Action concerning Disabled Persons (1982). UN also declared the Decade (1983-1992) as decade of Disabled Persons. Since then, the attention towards the disabled people and the need to promote their welfare came into the forefront. The Asia Pacific Region was the first to follow up with a regional Decade of Disabled Persons in 1993 since approximately 400 million of the world’s 600 million disabled people live in the region. The first changes came in 1982 when the World Program of Action Concerning Disabled Persons was accepted by the General Assembly of the UN. The United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities (UNSR), formulated by the UN at the end of their Decade of Disabled Persons in 1992, followed the World Program as the next treaty to address the issue of disability. Both of these defined handicap as “the encounter between the person with a disability and the environment,” effectively shifting the focus of disability legislation all over the world from aiding the disabled person to adapting their surroundings to permit equal participation in society. This change reflects the lessons learned from the human rights movement, but there is still considerable scope for integration of the rights based approach with discussions of disability. 7.2 WASHINGTON GROUP ON DISABILITY STATISTICS The Washington Group on Disability Statistics was formed as a result of the United Nations International Seminar on Measurement of Disability that took place in New York in June 2001. An outcome of that meeting was the recognition that statistical and methodological work was needed at an international level in order to facilitate the comparison of data on disability cross-nationally. Consequently, the United Nations Statistical Division authorized the formation of a City Group to address some of the issues identified in the International Seminar and invited the National Centre for Health Statistics, the official health statistics agency of the United States, to host the first meeting of the group. The City Group is an informal, temporary organizational format that allows representatives from national statistical agencies to come together to address selected problems in statistical methods. A City Group usually develops a series of three to four working meetings and is named after the location of the

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first meeting. Participants are representatives of national statistical offices, international organisations, organisations representing persons with disabilities and other non-government organisations. The main purpose of the Washington Group on Disability Statistics is the promotion and coordination of international cooperation in the area of health statistics by focusing on disability measures suitable for censuses and national surveys which will provide basic necessary information on disability throughout the world. 7.3 Convention on the Rights of Persons with Disabilities (UNCRPD) The Convention on the Rights of Persons with Disabilities and its Optional Protocol was adopted on 13 December 2006 at the United Nations Headquarters in New York, and was opened for signature in March 2007. It is the first comprehensive human rights treaty of the 21st century and is the first human rights convention to be open for signature by regional integration organizations. The Convention entered into force on 3May 2008. The Convention marks a "paradigm shift" in attitudes and approaches to persons with disabilities. It takes to a new height the movement from viewing persons with disabilities as "objects" of charity, medical treatment and social protection towards viewing persons with disabilities as "subjects" with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active of society. The Convention is intended as a human rights instrument with an explicit, social development dimension. It adopts a broad categorization of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms. It clarifies and qualifies how all categories of rights apply to persons with disabilities and identifies areas where adaptations have to be made for persons with disabilities to effectively exercise their rights and areas where their rights have been violated, and where protection of rights must be reinforced. Considering the existence of powerful human rights institutions that protect all people, including the disabled, and treaties that protect solely disabled persons—the World Program of Action, Standard Rules, Beijing Declaration on the Rights of People with Disabilities, Declaration of the Rights of Disabled Persons, Declaration on the Rights of Mentally Retarded Persons, and Principles for the Protection of Persons with Mental Illness—one might wonder why there is need for a new convention. Firstly, none of the treaties that deal specifically with disabilities are legally binding. Secondly, the very existence of human rights conventions for refugees, women, and children indicates that there are specific groups that are especially vulnerable and require a single set of binding norms and a separate body to monitor respect for their rights. Arguably, disabled persons fall into this category as well. Lastly, a convention allows for clarity—it encourages more robust human rights expertise on disability as well as creating a focused body to which NGOs can direct their claims. 7.4 Rights of Persons with Disabilities in the Asia Pacific Context The international change in attitudes towards the rights of persons with disabilities is especially important for the Asia Pacific Region since approximately 400 million of the world’s 600 million disabled people G2

live in the region. Nearly one third of disabled persons live below the poverty line, and less than ten percent of youth with disabilities attend school. Governments of developing nations, of which there are many in Asia and the Pacific, have been reluctant to champion the rights of disabled persons because of the enormous cost involved in implementing suitable policies. However, the scale of the problem alone should assure governments that protecting these rights are not a matter of choice. The United Nations declared 1981 the International Year of Disabled Persons, and the adoption of the World Program of Action concerning Disabled Persons (1982) and the declaration of the Decade of Disabled Persons (1983-1992) followed soon thereafter. These events provided the catalyst for major revisions in the way disabled persons were regarded by governmental and non-governmental institutions. The Asia Pacific Region was the first to follow up with a regional Decade of Disabled Persons in 1993. Inter-country meetings to discuss possible methods of inter-sectoral collaboration and to assess the success of the Asian Pacific Decade of Disabled Persons were held in India, Malaysia, Singapore and South Korea. Partly in response to the increased international and regional attention, a significant amount of legislation has been ed in the region regarding disabled persons. However, the laws are uneven in scope, implementation and monitoring processes. A closer examination of the legislation of the different nations will reveal areas where these laws are weak and give rise to general recommendations. Australia and Japan have both ed comprehensive disability laws. In Japan the process of getting these bills ed involved the initiative of many NGOs and the input of disabled individuals in high political positions. However, most other countries have piecemeal legislation that only covers one aspect of disability rights. On the surface, much progress has been made regionally for the incorporation of the rights perspective into disability legislation. Examples include the India’s Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act in 1995 and the Philippines’ Magna Carta for Disabled Persons in 1991. The success of the Asia Pacific Decade of Disabled Persons depends not just on creating appropriate legislation regarding disabled persons but putting into place mechanisms for accurately monitoring such legislation. 7.5 Biwako Millennium Framework Economic and Social Commission for Asia and the Pacific (ESCAP) in its at its fifty-eighth session, Highlevel Intergovernmental Meeting to Conclude the Asian and Pacific Decade of Disabled Persons, 19932002, adopted resolution in May 2002 on promoting an inclusive, barrier-free and rights-based society for people with disabilities in the Asian and Pacific region in the twenty-first century, by which it proclaimed the extension of the Asian and Pacific Decade of Disabled Persons, 1993-2002, for another decade, 2003-2012. The Biwako Millennium Framework sets out a draft regional framework for action that provides regional policy recommendations for action by Governments in the region and concerned stakeholders to achieve an inclusive, barrier-free and rights-based society for persons with disabilities in the new decade, 2003-2012. The regional framework for action identifies seven areas for priority action in the new decade. Each priority area contains critical issues, targets and the action required. The regional framework for action explicitly incorporates the millennium development goals and their relevant G3

targets to ensure that concerns relating to persons with disabilities become an integral part of efforts to achieve the goals. The seven priority areas and the targets identified in the framework are as follows. A. Self-help organizations of persons with disabilities (SHOs) and related family and parent associations Target 1. Governments, international funding agencies and non-governmental organizations (NGOs) should, by 2004, establish policies with the requisite resource allocations to the development and formation of self-help organizations of persons with disabilities in all areas, and with a specific focus on slum and rural dwellers. Governments should take steps to ensure the formation of parents associations at local levels by the year 2005 and federate them at the national level by year 2010. B. Women with disabilities Target 2. Governments and civil society organizations should, by 2005, fully include organizations of persons with disabilities in their decision-making processes involving planning and programme implementation which directly and indirectly affect their lives. Target 3. Governments should, by 2005, ensure anti-discrimination measures, where appropriate, which safeguard the rights of women with disabilities. Target 4. National self-help organizations of persons with disabilities should, by 2005, adopt policies to promote the full participation and equal representation of women with disabilities in their activities, including in management, organizational training and advocacy programmes. C. Early detection, early intervention and education Target 5. Women with disabilities should, by 2005, be included in the hip of national mainstream women’s associations. Target 6. Children and youth with disabilities will be an integral part of the population targeted by the millennium development goal of ensuring that by 2015 all boys and girls will complete a full course of primary schooling. Target 7. At least 75 per cent of children and youth with disabilities of school age will, by 2010, be able to complete a full course of primary schooling D. Training and employment, including self-employment Target 8. By 2012, all infants and young children (birth to four years old) will have access to and receive community-based early intervention services, which ensure survival, with and training for their families. Target 9. Governments should ensure detection of disabilities at as early an age as possible. Target 10. At least 30 per cent of the signatories (Member States) will ratify the International Labour Organization Vocational Rehabilitation and Employment (Disabled Persons) Convention (No. 159), 1983, by 2012.

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Target 11. By 2012, at least 30 per cent of all vocational training programmes in signatory countries will be inclusive of persons with disabilities and provide appropriate and job placement or business development services for them. E. Access to built environments and public transport Target 12. By 2010, reliable data that measure the employment and self-employment rates of persons with disabilities will exist in all countries. Target 13. Governments should adopt and enforce accessibility standards for planning of public facilities, infrastructure and transport, including those in rural/agricultural contexts. Target 14. All new and renovated public transport systems, including road, water, light and heavy mass railwayand air transport systems, should be made fully accessible by persons with disabilities and older persons; existing land, water and air public transport systems (vehicles, stops and terminals) should be made accessible and usable as soon as practicable. F. Access to information and communications, including information, communications and assistive technologies Target 15. All international and regional funding agencies for infrastructure development should include universal and inclusive design concepts in their loan/grant award criteria. Target 16. By 2005, persons with disabilities should have at least the same rate of access to the Internet and related services as the rest of citizens in a country of the region. Target 17. International organizations (e.g., International Telecommunication Union, International Organization for Standardization, World Trade Organization, World Wide Web Consortium, Motion Picture Engineering Group) responsible for international ICT standards should, by 2004, incorporate accessibility standards for persons with disabilities in their international ICT standards. Target 18. Governments should adopt, by 2005, ICT accessibility guidelines for persons with disabilities in their national ICT policies and specifically include persons with disabilities as their target beneficiary group with appropriate measures. Target 19. Governments should develop and coordinate a standardized sign language, finger Braille, tactile sign language, in each country and to disseminate and teach the results through all means, i.e. publications, CD-ROMs, etc. Target 20. Governments should establish a system in each country to train and dispatch sign language interpreters, Braille transcribers, finger Braille interpreters, and human readers and to encourage their employment Target 21. Governments should halve, between 1990 and 2015, the proportion of persons with disabilities whose income/consumption is less than one dollar a day. 7.6 International Commitments on Disability Statistics For generation of appropriate statistics according to standards and guidelines developed by International agencies for monitoring implementation of schemes towards the accessibility of facilities and services for G5

the disabled, India is a partner country in the Washington Group set up by the UNSC for standardization of disability statistics and bringing about uniformity in definitions, etc. at the global level. The UN Disability Convention adopted in 2006 as well as the UN Standard Rules on the Equalization of Opportunities for persons with Disabilities (Standard Rules, 1993) and the 2002 Biwako Millennium Framework for Action Towards an Inclusive, Barrier-free and Rights-based Society for persons with Disabilities in Asia and the Pacific (BMF) adopted by UN ESCAP, stress the need to develop valid reliable and internationally comparable disability statistics. 7.7 International Classification of Functioning (ICF), Disability and Health Though the Reports of the Expert Committee on Disability Prevention and Rehabilitation of WHO had noted that no ideal set of definition existed during the seventies and proposed the use of operational definition to view disability as a process and examination of it in the context of disease-impairmentdisability-handicap, it was the International Classification of Impairment, Disability and Handicap (1980) that first proposed a definition of Impairment, Disability and Handicap. It was in 1988 that the first international data-base on disability was available under the UN system, titled United Nations’ Disability Statistics Data base (DISTAT). The publication of International Classification of Functioning (ICF), Disability and Health (2003) was a landmark in a sense that unit of enumeration became the state of health of individuals rather than the individual himself with provisions to for functionality, both activity limitations and participation restrictions. The ‘Washington Group’ adopted this approach and produced a set of questions aimed at assessing the functional capabilities. The Group also trained countries in conducting tests in disability data collection methodology. The main contention was to ensure that there is convergence in the definitions concerned with measurement of disability by developing consensus among member countries using population based measuring tools. It is important to note that definitional problems and ambiguity creates differences in the overall data generated. Bringing about uniformity in definition has therefore been a mandate for the Washington Group at the global level. 7.8 ESCAP/ WHO Disability Project (2004-06) The ESCAP/ WHO disability project conducted during 2004-06 had received active participation from India. A pilot survey was carried out in Meerut, India as part of the project. The UN Disability Convention adopted in 2006 as well as the UN Standard Rules on the Equalization of Opportunities for persons with Disabilities (Standard Rules, 1993) and the 2002 Biwako Millennium Framework for Action Towards an Inclusive, Barrier-free and Rights-based Society for persons with Disabilities in Asia and the Pacific (BMF) adopted by UN ESCAP, stress the need to develop valid reliable and internationally comparable disability statistics. Built upon the outcome of the project, the follow-up activities seeks to promote better disability data collection by developing standard measurements and improving national technical capacities. Training Manuals are being designed and finalized taking into country specific needs.

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7.9 Prevalence of Disability Data on the proportion of persons with disabilities to the total population i.e. the prevalence of disability indicates substantial variations across the countries. While most developed countries reported a range of 10% to 20% prevalence of disability their developing countries’ counterpart reported a range of 1% to 2%. This wide variation is attributable to the varied definitions of persons with disabilities, methods, and capacities for data collection at the national levels. UNESCAP brings out disability profile of countries and areas in the Asia and the Pacific in their annual publications “Disability at a Glance” where the disability prevalence rates are also indicated. Even in the Asia-Pacific region percentage of population with disability varies from 20% in Australia or New Zealand to 1% in Indonesia and Malayasia. India has got disability prevalence of 2.1% as revealed by Population Census 2001.

Fig.7.1 Proportion (%) of persons with disabilities to total population

% of population having disability

25 20

20

20 15

12.3 10

10 5

8

7

6.4 6.3

5.6

5

4.6 4.5

0

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3.5 3.5 3.4

3

2.8 2.5 2.1 1.7 1.6 1.2

1

1

Chapter 8 Government Initiatives for Redressal of Disability in India 8.1 National Policy for Persons with Disabilities, 2006 The National Policy recognizes that Persons with Disabilities are valuable human resources for the country and seeks to create an environment that provides them equal opportunities, protection of their rights and full participation in society. It is in consonance with the basic principles of equality, freedom, justice and dignity of all individuals that are enshrined in the Constitution of India and implicitly mandate an inclusive society for all, including persons with disabilities. The National Policy recognizes the fact that a majority of persons with disabilities can lead a better quality of life if they have equal opportunities and effective access to rehabilitation measures. The salient features of the National Policy are: i) Physical Rehabilitation, which includes early detection and intervention, counselling and medical interventions and provision of aids and appliances. It also includes the development of rehabilitation professionals; ii) Educational Rehabilitation which includes vocational training; and iii) Economic Rehabilitation, for a dignified life in society. 8.2 Mechanism for implementation of the National Policy The following mechanism is in place for implementation of the National Policy: a. The Ministry of Social Justice & Empowerment is the nodal Ministry to coordinate all matters relating to implementation of the Policy. b. The Central Coordination Committee, with stakeholder representation, coordinates matters relating to implementation of the National Policy. There is a similar Committee at the State level. Panchayati Raj Institutions and Urban Local Bodies are associated in the functioning of the District Disability Rehabilitation Centres. They are required to play a crucial role in the implementation of the National Policy to address local level issues. c. The Ministries of Home Affairs, Health & Family Welfare, Rural Development, Urban Development, Youth Affairs & Sports, Railways, Science & Technology, Statistics & Programme Implementation, Labour, Panchayati Raj and Women & Child Development and Departments of Elementary Education & Literacy, Secondary & Higher Education, Road Transport & Highways, Public Enterprises, Revenue, Information Technology and Personnel & Training are also identified for implementation of the policy.

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d. The Chief Commissioner for Persons with Disabilities at Central level and State Commissioners at the State level play key role in implementation of National Policy, apart from their statutory responsibilities. 8.3 India as a signatory of UN Convention on the Rights of Persons with Disabilities The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which India signed on 30th March, 2007, was ratified and came into force on 3.05.2008. Three important obligations arise out of the Convention, namely (a) Implementation of provisions of the UNCRPD, (b) Harmonization of Indian Laws with the UNCRPD, and (c) Preparation of a Country Report by 2010. All concerned Central Ministries were requested to implement the provisions of the UNCRPD in so far as these relate to them. The need for focus on women and children was also emphasized. The Ministries were also requested to identify statutes and orders that require amendment in the light of the Convention and to initiate the process of amendment. All Chief Ministers of States and s of UTs were similarly requested to refer to various obligations under the Convention that relate to the State Governments and to implement the same. State Governments/ UTs were also requested to furnish the status report for preparation of Country Report. 8.4 Disability Certificates The PWD Act, 1995, provides certain benefits to persons with disabilities who have not less than 40% of any disability, as certified by a medical authority. Thus, a person with disability who wishes to avail the benefits under the Act, has to obtain a disability certificate from the medical authority notified for the purpose. State Governments are responsible for issuing disability certificates on the basis of applications from the persons with disabilities. The Persons with Disabilities Rules, 1996 have been amended in 2009 which inter-alia prescribed a simplified and decentralized procedure for issuance of Disability Certificate. In the amended rules, instead of ―Medical Board‖, ―Medical Authorities‖ has been prescribed for issue of medical certificates. The Medical authorities have to be notified by the appropriate governments. 8.5 Statutory Committees i. Central Coordination Committee (CCC) constituted under Section 3 of the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, is chaired by the Minister for Social Justice and Empowerment and has official and non-official , including of Parliament, representatives of organizations of persons with disabilities and experts in the field of disability. It serves as the national focal point on disability matters and facilitates the continuous evolution of a comprehensive policy towards solving the problems faced by persons with disabilities. It advises the Central Government on the formulation of policies, programmes, legislation and projects with respect to disability and reviews and coordinates the activities of all the Ministries/ Departments of H2

Government and other Governmental and Non-Governmental Organizations which are dealing with matters relating to persons with disabilities. It takes up the cause of persons with disabilities with the concerned authorities and international organizations with a view to provide for schemes and projects for the disabled in the national plans and other programmes and policies evolved by the international agencies. ii. Central Executive Committee (CEC) constituted under Section 9 of the Persons with Disabilities Act, 1995, chaired by the Secretary, Ministry of Social Justice and Empowerment, is the executive body of the Central Coordination Committee. It is responsible for carrying out the decisions of the Central Coordination Committee and performs such other functions as may be delegated to it by the Central Coordination Committee. 8.6 Provisions of the PWD Act relating to Rehabilitation Section 2(w) of the PWD Act, 1995, defines ―rehabilitation‖ as ―a process aimed at enabling persons with disabilities to reach and maintain their optimal, physical, sensory, intellectual, psychiatric or social functional levels‖. Section 66 of the PWD Act, which deals with rehabilitation, reads as below: ―Appropriate Governments and local authorities to undertake rehabilitation (1) The appropriate Governments and the local authorities shall within the limits of their economic capacity and development undertake or cause to be undertaken rehabilitation of all persons with disabilities. (2) For purposes of sub-section (1), the appropriate Government and local authorities shall grant financial assistance to non-governmental organizations. (3) The appropriate Governments and local authorities while formulating rehabilitation policies shall consult the non-governmental organizations working for the cause of persons with disabilities.‖ 8.7 Components of Rehabilitation of Persons with Disabilities Some of the main components of rehabilitation of persons with disabilities are: (i) provision of assistive aids and appliances (ii) education (iii) vocational training (iv) assistance for employment (v) training in or assistance for independent living Central Government has been providing grant-in-aid to non-governmental organizations over successive Five Year Plans through various schemes for projects relating to rehabilitation of persons with disabilities, including the Deendayal Disabled Rehabilitation Scheme that covers components (ii) to (v) above and the H3

Scheme of Assistance to Disabled Persons for Purchase/ Fitting of Aids/Appliances (ADIP), covering component (i) above. 8.8 Schemes of the MSJE The Ministry of Social Justice & Empowerment operates various schemes for empowerment and rehabilitation of persons with disabilities (PWDs). The schemes aim to promote physical, psychological, social, educational and economic rehabilitation and development of persons with disabilities to enhance their quality of life and also enable them to lead a life with dignity. The major schemes for rehabilitation of persons with disabilities are: 1. Scheme of Assistance to Disabled Persons for Purchase/Fitting of Aids/Appliances (ADIP) - aims at physical rehabilitation of persons with disabilities through provision of assistive aids and appliances. 2. Deendayal Disabled Rehabilitation Scheme (DDRS)- an umbrella scheme that addresses all aspects of rehabilitation and includes projects covering various services ranging from programmes for preschool and early intervention to rehabilitation of leprosy-cured persons. 3. Scheme for Implementation of Persons with Disabilities Act- under the scheme funds are provided for projects to make public buildings barrier-free, to the institutions at regional and district level providing services to persons with disabilities and the creation of awareness on related issues. 4. Scheme of Incentives to Employers in the Private Sector for Providing Employment to Persons with Disabilities. 8.9 National Institutes working in the field of disability There are seven National Institutes under MSJE working in the field of disability. These institutes are engaged in Human Resources Development in the field of disability, providing rehabilitation services to the persons with disabilities, research and development. These National Institutes including their regional centres and composite regional centres run 80 courses of one year or more duration. The seven National Institutes are:1. National Institute for the Visually Handicapped (NIVH), Dehradun 2. National Institute for Empowerment of Persons with Multiple Disabilities (NIEPMD), Chennai 3. Swami Vivekanand National Institute for the Rehabilitation, Training and Research (SVNIRTAR), Cuttack 4. National Institute for the Hearing Handicapped (NIHH), Mumbai 5. National Institute for the Mentally Handicapped (NIMH), Secunderabad 6. National Institute for the Orthopaedically Handicapped (NIOH), Kolkata 7. Pt. Deendayal Upadhyaya Institute for the Physically Handicapped (PDUIPH), New Delhi.

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8.10 Regional and District-level Centres for Persons with Disabilities Composite Regional Centre (CRC): The scheme of setting up of Composite Regional Centres is a part of overall strategy to reach out to the persons with disabilities in the country and to facilitate the creation of the required infrastructure and capacity building at Central, State and District levels and below for awareness generation, training of rehabilitation professionals, service delivery etc. At present, there are six CRCs functioning at Sundernagar, Srinagar, Lucknow, Guwahati, Patna and Bhopal. District Disability Rehabilitation Centres: To facilitate the creation of infrastructure and capacity building at district level for awareness generation, rehabilitation, training and guiding rehabilitation professionals, MSJE with the active of the State Governments is providing comprehensive services to the persons with disabilities by way of setting up of District Disability Rehabilitation Centres in all the unserved districts of the country. 8.11 Economic Empowerment A. National Handicapped Finance and Development Corporation is an apex institution for channelizing the funds to persons with disabilities through the State Channelizing Agencies (SCAs) nominated by the State Government(s) or through Non Government Organizations (under Micro Credit Scheme) with the following purposes: a) To promote economic development activities and self-employment ventures for the benefit of persons with disability. b) To extend loan to the persons with disability for up gradation of their entrepreneurial skill for proper and efficient management of self-employment ventures. c) To extend loans to persons with disability for pursuing professional/technical education, leading to vocational rehabilitation/self-employment. d) To assist self-employed persons with disability in marketing their produce. B. National Awards for the Empowerment of Persons with Disabilities The National Awards are conferred on the persons with disabilities having outstanding achievements and the individuals and organizations that are working for the empowerment of persons with disabilities. These awards have been instituted with the objective to focus public attention on the issues concerning persons with disabilities and to promote their mainstreaming in the society. The awards are given on 3rd of December in every year, which has been declared as International Day of Disabled Persons. The awards are given under the following twelve categories:— (i) Best employees/self-employed with disabilities, (ii) Best employers and placement officer/agency of persons with disabilities, (iii) Best individual and institution working for the cause of persons with disabilities, H5

(iv) Role Model, (v) Best applied research/innovation/product development aimed at improving the life of persons with disabilities, (vi) Outstanding work in creation of barrier-free environment for the persons with disabilities, (vii) Best district in providing rehabilitation services, (viii) Best Local Level Committee of National Trust, (ix) Best State Channelizing Agency of National Handicapped Finance and Development Corporation (x) Outstanding creative adult persons with disabilities, and (xi) Best creative child with disabilities. (xii) Best Braille press C. National Handicapped Welfare Fund, subsequently renamed as National Fund for People with Disabilities (National Fund) was established in 1983. Presently, the National Fund is implementing a scholarship scheme for students with disabilities. D. Trust Fund for Empowerment of Persons with Disabilities: In pursuance of the directions of the Hon‘ble Supreme Court judgment dated 16.04.2004, a Trust Fund for Empowerment of Persons with Disabilities (chaired by Comptroller & Auditor General of India) was ed on 21.11.2006. 8.12 Statutory Authorities/Bodies of MSJE in the Disability Sector The Office of the Chief Commissioner for Persons with Disabilities (CD) has been set up to take steps to safeguard the rights and facilities to the persons with disabilities. Based on the complaints filed before him/her, if the provisions of the Persons with Disabilities Act, any rules, bye-laws, regulations, executive orders or instructions are violated or are not implemented, the Chief Commissioner takes up the matters with the concerned authorities. The Act also empowers the Chief Commissioner to issue suo-motu notice of any such non-compliance. National Trust for the Welfare of Persons with Autism, Cerebral Palsy,Mental Retardation and Multiple Disabilities is a statutory body set up under the National Trust for the welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act (Act 44 of 1999), 1999. The main objective of National Trust is to ensure persons with disabilities to lead independent life with dignity, and strengthen NGOs and other service providers and appoint legal guardians to take care the needs of persons with disabilities. The major activities of National Trust include training and awareness programmes, capacity building programme & shelter, care giving & empowerment programmes. The Rehabilitation Council of India was initially set up and given Statutory Status by an Act of Parliament namely Rehabilitation Council of India Act, 1992. The Act was subsequently amended in 2000. H6

The Council is responsible for regulating and monitoring the training of rehabilitation professionals and personnel, promoting research in rehabilitation and special education. 8.13 Other major initiatives i.

Artificial Limbs Manufacturing Corporation of India (ALIMCO) was set up in 1972 by the Government of India, a ―Not for Profit‖ company with the mission of Empowerment of Persons with Disabilities and restoration of their dignity by way of manufacturing and supplying durable, sophisticated, scientifically manufactured modern and ISI standard quality Assistive aids and appliances that can promote physical, psychological, social economic and vocational rehabilitation by reducing the effect of disabilities and enhancing potential for self-dependence. ALIMCO is the premier and the largest manufacturer of quality Aids & Appliances in whole of South Asia.

ii.

Accessibility to Buildings: Sections 45 and 46 of the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 envisage barrier free accessibility in public buildings which includes ramps, adaptation of toilets for wheel chair s etc. Several Central Ministries have been requested to take appropriate steps in this regard. In a pursuant Accessibility to Websites

iii.

Ministry of Social Justice & Empowerment has launched its accessible website – www.socialjustice.nic.in which is disabled friendly. A new category of National Awards for the welfare & development of persons with disabilities has been announced for launching disabled friendly websites in Government Public and Private Sectors.

iv.

Dedicated Satellite Channel on Disability: The EDUSAT Channel ‗NAVSHIKHAR‘ has been set up at RCI Office in collaboration with Indian Space & Research Organization (ISRO) and Media Lab Asia (MLA) for the benefits of the students, trainees and parents of the persons with disabilities.

v.

National Interactive Web Portal on Disability: RCI in collaboration with the Media Lab Asia (MLA) has developed a comprehensive national web portal namely ―www.punarbhava.in‖ on disability. The portal is designed to provide all related information regarding different disability issues at one platform on regular basis.

8.14 Programmes/Activities of other Ministries relating to Disability Besides Ministry of Social Justice and Empowerment other Ministries/ Departments of Government of India which attend to certain policy measures and other incidental issues related to disability through their programmes and activities are as follows: i.

Ministry of Women & Child Development

ii.

Ministry of Human Resource Development

iii.

Ministry of Health & Family Welfare H7

iv.

Ministry of Urban Development

v.

Ministry of Housing & Urban Poverty Alleviation

vi.

Ministry of Rural Development

vii.

Ministry of Labour & Employment

viii.

Department of Higher Education

ix.

Department of Personnel & Training (DOP&T)

x.

Department of Science and Technology

xi.

Department of Scientific and Industrial Research.

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Appendix-I State-wise Tables and Maps

Table S1: Total Number (in 000) of Disabled Persons in States/UTs in India for each Population Category No. of disabled persons(in thousands) State Name Andhra Pradesh Arunachal Pradesh Assam Bihar Chhattisgarh Delhi Goa Gujarat Haryana Himachal Pradesh Jammu & Kashmir Jharkhand Karnataka Kerala Madhya Pradesh Maharashtra Manipur Meghalaya Mizoram Nagaland Orissa Punjab Rajasthan Sikkim Tamil Nadu Tripura Uttar Pradesh Uttaranchal West Bengal A & N Islands Chandigarh Dadra & Nagar Haveli Daman & Diu Lakshadweep Pondicherry All India

Total

Rural

Urban

1364.98 33.32 530.3 1887.61 419.89 235.89 15.75 1045.47 455.04 155.95 302.67 448.38 940.64 860.79 1408.53 1569.58 28.38 28.8 16.01 26.5 1021.34 424.52 1411.98 20.37 1642.5 58.94 3453.37 194.77 1847.17 7.06 15.54 4.05 3.17 1.68 25.86

1050.4 27.46 468.11 1692.45 344.99 13.43 8.56 719.37 339.79 144.76 229.72 348.93 661.14 647.78 1060.43 1020.37 20.96 22.74 9.69 23.52 877.71 297.02 1109.38 18.57 945.02 48.8 2705.78 154.83 1354.25 5.08 1.66 3.27 1.88 0.99 9.54

314.58 5.86 62.19 195.16 74.89 222.45 7.19 326.1 115.25 11.19 72.95 99.45 279.5 213.01 348.1 549.21 7.42 6.06 6.32 2.98 143.63 127.51 302.6 1.8 697.48 10.14 747.59 39.94 492.92 1.98 13.88 0.78 1.29 0.69 16.32

21906.77

Male

Female

773.97 591.01 22.18 11.14 297.52 232.78 1131.53 756.09 231.77 188.12 144.87 91.01 8.89 6.86 604.96 440.5 273.84 181.2 90.44 65.51 171.82 130.85 264.23 184.15 537.73 402.91 458.35 402.44 824.69 583.84 933.87 635.72 15.46 12.92 15.32 13.49 8.76 7.25 14.54 11.96 568.91 452.42 252.86 171.67 840.65 571.33 11.41 8.96 791.69 850.81 33.46 25.48 2076.5 1376.87 113.21 81.56 1058.69 788.49 4.23 2.83 9.54 6 2.33 1.72 1.78 1.39 0.9 0.78 14.77 11.09

SC

ST

239.63 0.15 41.15 285.84 58.35 39.32 0.32 84.83 92.93 41.28 22.66 55.8 158.23 91.08 237.72 188.13 0.8 0.13 0 178.89 130.38 241.72 1.19 312.81 10.74 742.74 36.11 410.64 2.8 0.11 0.13 4.5

91.35 23.16 56.81 16.88 117.86 0.02 136.81 6.57 34.13 104.87 61.37 10.27 237.87 130.71 8.82 24.63 15.38 24.32 190.42 183.05 3.8 13.22 16.47 1.98 5.79 96.15 0.81 2.75 0.26 1.64 -

16388.38 5518.41 12605.67 9301.15 3711.11 1618.17

Source: Population Census 2001

S1

Table S2: Total Number (in thousands) of Disabled Persons in States/ UTs in India and their Percentage Distribution by Type of Disability Percent Total no. of % distribution of disabled persons in state disabled in state disabled persons by type of disability State name population (in thousands) seeing speech hearing movement mental Andhra Pradesh 1.8 1364.98 43 10 5 30 11 Arunachal Pradesh 3 33.32 69 7 9 10 4 Assam 2 530.3 53 11 10 17 9 Bihar 2.3 1887.61 53 7 4 27 9 Chhattisgarh 2 419.89 38 7 8 36 10 Delhi 1.7 235.89 51 7 4 28 11 Goa 1.2 15.75 28 12 6 31 23 Gujarat 2.1 1045.47 47 6 7 30 10 Haryana 2.2 455.04 44 5 6 33 11 Himachal Pradesh 2.6 155.95 41 8 10 30 11 Jammu & Kashmir 3 302.67 69 6 5 13 8 Jharkhand 1.7 448.38 42 9 6 31 12 Karnataka 1.8 940.64 47 10 5 28 10 Kerala 2.7 860.79 39 8 9 28 16 Madhya Pradesh 2.3 1408.53 45 5 6 35 8 Maharashtra 1.6 1569.58 37 7 6 36 14 Manipur 1.2 28.38 41 10 11 22 17 Meghalaya 1.2 28.8 46 12 13 18 11 Mizoram 1.8 16.01 39 13 15 15 18 Nagaland 1.3 26.5 38 17 20 16 10 Orissa 2.8 1021.34 50 7 8 25 10 Punjab 1.7 424.52 40 5 4 35 15 Rajasthan 2.5 1411.98 53 5 5 28 8 Sikkim 3.8 20.37 53 16 17 11 4 Tamil Nadu 2.6 1642.5 59 8 4 22 8 Tripura 1.8 58.94 47 9 10 24 11 Uttar Pradesh 2.1 3453.37 54 7 4 27 8 Uttaranchal 2.3 194.77 44 9 8 29 10 West Bengal 2.3 1847.17 47 9 7 22 15 A & N Islands 2 7.06 47 9 8 26 9 Chandigarh 1.7 15.54 54 6 4 25 12 Dadra Nagar Haveli 1.8 4.05 58 7 8 20 7 Daman & Diu 2 3.17 60 6 4 22 9 Lakshadweep 2.8 1.68 36 12 9 30 13 Pondicherry 2.7 25.86 41 7 9 34 9 All India 2.13 21906.77 49 7 6 28 10 Source: Population Census 2001

S2

all 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100 100

Table S3: Number of Totally Disabled and their % distribution by type of disability in states/UTs of India in 1981

State/UT

Andhra Pradesh Arunachal Pradesh Bihar Delhi Gujarat Haryana Himachal Pradesh J&K Karnataka Kerala Lakshadweep Madhya Pradesh Maharashtra Manipur Meghalaya Mizoram Nagaland Orissa Punjab Rajasthan Sikkim Tamil Nadu Tripura Uttar Pradesh West Bengal A & N Island Chandigarh D &N Haveli Goa, Daman & Diu Pondicherry All India

Totally disabled

% of Totally Disabled by State

% distribution of disabled persons by type of disability Totally Blind Totally Totally Crippled Dumb

100552 2626 98735 5157 68399 15843 10714 13795 54730 31053 155 101873 82392 2167 2676 1547 2792 61298 19328 80043 2483 87431 4143 164556 100955 262 345 225 1631 1042

8.99 0.23 8.82 0.46 6.11 1.42 0.96 1.23 4.89 2.78 0.01 9.1 7.36 0.19 0.24 0.14 0.25 5.48 1.73 7.15 0.22 7.81 0.37 14.71 9.02 0.02 0.03 0.02 0.15 0.09

40 28 40 38 34 48 37 28 33 26 48 52 45 29 42 24 19 45 47 58 7 33 37 57 29 26 28 40 28 46

30 15 36 42 47 30 25 36 35 39 23 34 32 32 28 28 21 32 33 27 14 34 36 25 34 44 48 28 39 28

30 57 24 20 18 21 38 35 32 35 29 14 23 39 30 49 61 22 20 15 78 32 27 18 37 30 24 32 32 26

1118948

100

43

32

25

Source: Population Census 1981

S3

Table S4: Percentage of disabled persons in the population of each State/UT State/UT

rural

urban

male

female

person

Andhra Pradesh Arunachal Pradesh Assam Bihar Chhatisgarh Delhi Goa Gujarat Haryana Himachal Pradesh Jammu & Kashmir Jharkhand Karnataka Kerala Madhya Pradesh Maharashtra Manipur Meghalaya Mizoram Nagaland Orissa Punjab Rajasthan Sikkim Tamil Nadu Tripura Uttar Pradesh Uttaranchal West Bengal A & N. Island Chandigarh D & N Haveli Daman & Diu Lakshadweep

1.9 1.7 1 1.7 1.8 0.7 1.6 1.9 1.9 2.7 1.6 1.3 1.7 2.2 1.7 2 1 1.6 0.8 0.9 2.5 2.2 1.5 1.7 2 0.7 2 2.1 1.7 1.7 0.8 0.9 0.9 2.3

1.4 0.1 1.1 1.5 1.9 0.5 1.5 1.6 1.4 1.3 1.3 1 1.1 2.3 1.5 1.5 1 0.9 0.7 0.7 1.8 1.5 1.3 0.6 1.8 1.1 1.6 0.9 1.9 1 0.6 0.7 1.4 2.6

1.9 1.6 1.1 2.1 2 0.7 2 2 2.1 3.2 2 1.6 1.8 2.5 1.9 2.1 1.1 1.8 0.8 0.8 2.6 2.3 1.8 1.7 2.1 0.8 2.2 2 2 2 0.6 1 0.9 2.7

1.7 1.3 0.9 1.2 1.6 0.4 1.2 1.5 1.4 2 1.2 0.9 1.4 2 1.4 1.6 0.8 1.3 0.7 0.9 2.3 1.7 1.2 1.5 1.8 0.7 1.5 1.6 1.5 1 0.6 0.7 1.3 2.3

1.8 1.4 1 1.7 1.8 0.6 1.6 1.8 1.8 2.6 1.6 1.2 1.6 2.2 1.7 1.8 1 1.5 0.8 0.9 2.5 2 1.5 1.6 1.9 0.8 1.9 1.8 1.8 1.5 0.6 0.8 1.1 2.5

Pondicherry

1.8

2.4

2.1

2.2

2.2

All India

1.8

1.5

2

1.5

1.8

Source: NSSO Survey on Disability 2002

S4

Table S5: Prevalence of different types of disability per 100,000 persons in each state/UT

State/UT Andhra Pradesh Arunachal Pradesh Assam Bihar Chhatisgarh Delhi Goa Gujarat Haryana Himachal Pradesh Jammu & Kashmir Jharkhand Karnataka Kerala Madhya Pradesh Maharashtra Manipur Meghalaya Mizoram Nagaland Orissa Punjab Rajasthan Sikkim Tamil Nadu Tripura Uttar Pradesh Uttaranchal West Bengal A & N Islands Chandigarh D & N Haveli Daman & Diu Lakshadweep Pondicherry All India

Mental retardation

Mental illness

Blindness

Low vision

Hearing

Speech Locomotor

90 11 45 70 84 44 240 93 92 118 104 63 98 194 72 99 47 63 127 54 104 116 82 39 113 24 92 104 114 78 64 67 58 249 95

69 167 106 105 97 35 112 106 87 195 165 82 50 272 98 90 123 125 141 58 170 89 81 126 88 42 97 101 169 211 61 63 44 177 62

215 120 112 141 170 30 37 140 132 273 172 116 208 176 202 224 56 134 32 85 293 169 162 60 186 74 240 189 184 84 40 109 30 225 329

112 123 47 51 89 12 101 37 32 131 95 23 104 132 53 71 52 141 36 105 244 58 37 50 102 10 64 78 92 93 18 11 17 81 62

333 503 168 189 410 40 376 298 227 622 223 191 273 453 196 332 211 294 197 171 582 208 182 894 428 113 248 283 335 372 69 102 169 588 769

259 269 148 179 226 44 382 205 181 281 181 183 204 335 176 215 113 252 138 130 188 166 149 703 245 135 183 257 236 255 101 117 189 326 405

966 350 411 1062 1016 398 862 1100 1153 1345 723 699 858 1099 1046 1051 424 662 191 261 1149 1333 906 412 1059 412 1176 922 859 692 379 485 664 1333 995

94

105

192

77

291

204

1008

Source: NSSO Survey on Disability 2002

S5

Table S6: Percentage distribution of disabled persons of age 5 years and above by level of general education for each state/UT literate State/UT not literate upto primary middle secondary & above Andhra Pradesh 64 20 7 9 Arunachal Pradesh 84 8 4 2 Assam 48 36 11 5 Bihar 66 19 8 8 Chhatisgarh 56 30 8 6 Delhi 24 30 18 27 Goa 44 23 15 18 Gujarat 45 26 15 14 Haryana 52 29 6 13 Himachal Pradesh 52 24 10 15 Jammu & Kashmir 64 16 10 10 Jharkhand 66 19 8 7 Karnataka 57 20 12 11 Kerala 33 37 19 10 Madhya Pradesh 52 32 9 8 Maharashtra 48 27 15 11 Manipur 60 16 13 11 Meghalaya 52 42 5 2 Mizoram 45 39 11 5 Nagaland 41 37 14 9 Orissa 64 21 10 5 Punjab 58 22 7 13 Rajasthan 58 25 9 8 Sikkim 68 25 4 2 Tamil Nadu 53 26 10 12 Tripura 48 34 13 6 Uttar Pradesh 58 24 10 7 Uttaranchal 59 23 11 7 West Bengal 48 31 11 10 Andaman & N. Isl 33 42 19 7 Chandigarh 45 23 13 20 D & N Haveli 46 32 10 12 Daman & Diu 48 28 10 14 Lakshadweep 46 43 8 4 Pondicherry 43 37 11 9 All India 55 25 11 9 Source: NSSO Survey on Disability (2002)

S6

Maps Depicting Prevalence of Disability in the States of India Based on NSSO Survey (2002) Findings

S7

S8

S9

S10

*******************

S11

Appendix-II Major References

1. The First Report on Disability – Census of India 2001 by Office of Registrar General & Census Commissioner, Government of India. 2. Report no. 485 : Disabled Persons in India, July – December 2002 by National Sample Survey Office, M/o Statistics & P.I., Government of India. 3. People with Disability in India: From Commitments to Outcomes by Human Development Unit, South Asia Region, The World Bank. 4. Disability at a Glance 2008 & 2009 by UNESCAP. 5. Annual Report (2010) of Ministry of Social Justice & Empowerment, Government of India.