CHAPTER 1

I. INTRODUCTION
An estimated 70 million persons with disability in India are faced with problems of access to
basic and specialized health care services.1 Some of the main problems faced by persons
with disabilities are physical inaccessibility and financial barriers in accessing health care. In
addition to these barriers, there is the general problem of qualitatively poor health care
services. Despite the Government of India and the State Governments having introduced
several health schemes for the needs of the disabled, these do not adequately ensure their
right to full and equal healthcare.
The right to health as covered under the UN Convention on the Rights of Persons with
Disabilities (UNCRPD) requires that the State shall ensure that persons with disabilities
have the right to the enjoyment of the highest attainable standard of health without
discrimination on the basis of disability and that the State shall take all measures to ensure
that such a right is made a reality.2 As argued by Henry Shue, the right to access to health for
persons with disabilities is thus a basic right as it is necessary for the existence of all other
rights.3 Even rights such as the right to education and employment would be meaningless
unless persons with disabilities have access to adequate healthcare as without adequate health
care, no person would be able to avail of any employment or education opportunities.
This paper examines the state of the right to health for persons with disabilities in India. To
explore this question, we take the concept of equal access and non-discrimination as the
central themes and attempt to evaluate the legal and practical dimensions of accessibility to
healthcare (or lack thereof) for persons with disabilities.
II. METHODOLOGY

1 United Nations Development Programme, Official Records, U.N. document available at

http://www.un.org/disabilities/default.asp?id=18, last seen on 31/10/2015
2 Convention on the Rights of Persons with Disabilities, United
Nations,http://www.un.org/disabilities/convention/conventionfull.shtml.
3 Henry Shue, Basic Rights, 98 (2nd Edition, 1996).
1

This paper is divided into two sections. The first section looks at the scope of the right to
health both under the international instruments, the Constitution of India and other domestic
legislation.
The second part reviews the realities of the disability laws with right to health care using our
core themes of equal access and non-discrimination. This section is strengthened by the
traditional doctrinal research as most of the information can be sought from the available
literature by referring books, articles, journals, websites etc.
Finally, this paper contains a detailed summary of the various health care schemes in the
country for persons with disabilities.
CHAPTER 2
I.

THE LEGAL FRAMEWORK FOR THE RIGHT TO HEALTH FOR PERSONS

WITH DISABILITIES

(i) International Treaties and the Right to Health.

By ratifying the UNCRPD in 2008, India took on a series of obligations and standards in the
fields of education, employment and health care, whose aims were to transform the treatment
of persons with disabilities from being objects of charity, medical treatment and social
protection, to subjects with rights who can claim those rights, make decisions for their lives
based on free and informed consent, and live as active members of society. In this way, the
UNCRPD addresses disability from a social model, not perceiving disability as an
impairment or a deficiency, but focusing on the social discrimination that results from
disability.4
One of the core themes of the UNCRPD is to protect, promote and ensure the full and equal
enjoyment of all human rights and fundamental freedoms by all persons with disabilities and
to promote respect for their inherent dignity. This includes the right to equality in receiving
healthcare. Article 3 of the UNCRPD generally mandates the right to non-discrimination and
accessibility. Some of the other provisions of the UNCRPD that directly impact the right to
health include:

4 Mainstreaming Disability - Core Issues, UNCRPD India, available at http://uncrpdindia.org/advocacyinitiatives/core-groups/, last seen on 31/10/15.

a. Article 4 (i): To promote the training of professionals and staff working with persons with
disabilities in the rights recognised in the convention so as to better provide the assistance
and services guaranteed by those rights.
b. Article 9: To ensure that all facilities and services including medical facilities are
accessible for persons with disabilities.
c. Article 10: That persons with disabilities shall have the protection of their inherent right to
life on an equal basis with others.
d. Article 15: That no one shall be subject to cruel or degrading treatment nor shall he or she
be subject to any medical or scientific experiment without their free consent.
e. Article 17: Every person with disability has the same right as anyone else to respect for
their physical and mental integrity.
f. Article 19: The right to living independently and shall have access to a range of in-home,
residential and other community support services for living independently.
g. Article 22: The right to respect for privacy and the protection of privacy of personal, health
and rehabilitation information of persons with disabilities on an equal basis with others.
h. Article 25: The Right to Health. This article of the UNCRPD provides for the right to the
enjoyment of the highest attainable standard of health, without discrimination on the basis of
disability. These measures shall be gender sensitive, shall ensure that persons with disabilities
have access to information about the treatment they receive so that they know what they are
agreeing to. Article 25 provides for free and affordable health care, sexual and reproductive
health care, early identification and intervention services, services in rural areas, training of
health professionals, and prohibition of discrimination against persons with disabilities in
provision of health insurance.
i. Article 26: This provides for rehabilitation and mandates that governments must take
effective steps to enable persons with disabilities to maximise their independence, develop
their independent living and work skills, and manage their impairment or health condition.
Even before the UNCRPD was brought into force, the right to equal and accessible health
care had been declared in several international documents. The UN International Covenant on
Economic, Social and Cultural Rights 1966 (ICESCR) includes the right to timely and
appropriate health care, stating that health facilities, goods and services have to be accessible
3

to everyone without discrimination. This comprises physical accessibility, economic

accessibility, information accessibility and non- discrimination where health facilities,
goods and services are available to all but especially to those who are vulnerable or
marginalised. Article 12.2 (d) of the ICESCR deals with the right to the provision of equal
and timely access to basic preventive, curative, rehabilitative health services and health
education.5 Articles 2.2 and 3 of the Covenant also prohibit discrimination in access to health
care on a number of grounds, including physical or mental disability and health status.6
The international communitys support for the ideal of primary healthcare for all was first
articulated in the Alma Ata Declaration of 1978.7 It affirmed that health, which is a state of
complete physical, mental and social well-being, and not merely the absence of disease or
infirmity, was a fundamental human right and that the attainment of the highest possible level
of health is a world-wide social priority and its realization requires action in other social and
economic sectors beyond just the health sector.
Following the Alma Ata Declaration, the UN adopted the UN General Assembly of the
Standard Rules on the Equalization of Opportunities in 1993. 8 These rules cover all aspects of
life for people with disabilities and names preconditions and target areas for equal
participation as well as implementation and monitoring measures. Although not specifically
mentioning health services, Rule 5 of the UN Standard Rules on the Equalization of
Opportunities for Persons with Disabilities considers "accessibility" with reference both to
the physical environment and to information and communications services.9
Further, in 1997 the General Assembly identified accessibility as a priority in promoting the
equalization of opportunities for people with disabilities.10 This shows that a focus on
5 International Covenant on Economic, Social and Cultural Rights, Article 12.2 (d), ICESCR (1976).
6 International Covenant on Economic, Social and Cultural Rights, Article 2.3 & 3, ICESCR (1976).
7 Declaration of the Alma Ata, World Health
Organisation,http://www.who.int/publications/almaata_declaration_en.pdf, last seen on 31/10/2015.
8 Compendium of the International and Regional Instruments, United Nations Enable,
http://www.un.org/esa/socdev/enable/compendium.htm, last seen on 31/10/2015.
9 The Standard Rules on the Equalization of Opportunities for Persons with Disabilities, United
Nations Enable, http://www.un.org/esa/socdev/enable/dissre00.htm, last seen on 31/10/2015.
4

accessibility is crucial to reversing exclusion and enhancing equalization of opportunities for

persons with disabilities.
Thus many international treaties and instruments clearly focus on equal access to health
facilities and services for all without discrimination.

(ii) The Constitution of India.

The Constitution of India applies uniformly to every legal citizen of India, whether they are
healthy or disabled in any way (physically or mentally)
Under the Constitution the disabled have been guaranteed the following fundamental rights:
a. The Constitution secures to the citizens including the disabled, a right of justice,
liberty of thought, expression, belief, faith and worship, equality of status and of
opportunity and for the promotion of fraternity.
b. Article 15(1) enjoins on the Government not to discriminate against any citizen of
India (including disabled) on the ground of religion, race, caste, sex or place of birth.
c. Article 15 (2) States that no citizen (including the disabled) shall be subjected to any
disability, liability, restriction or condition on any of the above grounds in the matter
of their access to shops, public restaurants, hotels and places of public entertainment
or in the use of wells, tanks, bathing ghats, roads and places of public resort
maintained wholly or partly out of government funds or dedicated to the use of the
general public. Women and children and those belonging to any socially and
educationally backward classes or the Scheduled Castes & Tribes can be given the
benefit of special laws or special provisions made by the State.
d. There shall be equality of opportunity for all citizens (including the disabled) in
matters relating to employment or appointment to any office under the State.

10 U.N. General Assembly, Implementation of the world programme of action concerning disabled persons,
Res. 54/388, Sess. 54, U.N. Document available at ://www.un.org/disabilities/default.asp?id=46.

e. No person including the disabled irrespective of his belonging can be treated as an

untouchable. It would be an offence punishable in accordance with law as provided by
Article 17 of the Constitution.
f. Every person including the disabled has his life and liberty guaranteed under Article
21 of the Constitution.
g. There can be no traffic in human beings (including the disabled), and beggar and other
forms of forced labour is prohibited and the same is made punishable in accordance
with law (Article 23).
h. Article 24 prohibits employment of children (including the disabled) below the age of
14 years to work in any factory or mine or to be engaged in any other hazardous
employment. Even a private contractor acting for the Government cannot engage
children below 14 years of age in such employment.
i. Article 25 guarantees to every citizen (including the disabled) the right to freedom of
religion. Every disabled person (like the non-disabled) has the freedom of conscience
to practice and propagate his religion subject to proper order, morality and health.
j. No disabled person can be compelled to pay any taxes for the promotion and
maintenance of any particular religion or religious group.
k. No Disabled person will be deprived of the right to the language, script or culture
which he has or to which he belongs.
l. Every disabled person can move the Supreme Court of India to enforce his
fundamental rights and the rights to move the Supreme Court is itself guaranteed by
Article 32.
m. No disabled person owning property (like the non-disabled) can be deprived of his
property except by authority of law though right to property is not a fundamental
right. Any unauthorized deprivation of property can be challenged by suit and for
relief by way of damages.
n. Every disabled person (like the non-disabled) on attainment of 18 years of age
becomes eligible for inclusion of his name in the general electoral roll for the
territorial constituency to which he belongs.

(iii) The PWD Act,1995 and Other Domestic Legislation.

The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full
Participation) Act 1995 (PWD Act) was enacted in 1995. The enactment of the PWD Act
brought with it the first glimpses of legal recognition of the socio-economic rights of persons
with disabilities in India. Unfortunately, the PWD Act fell short of expectations and failed to
provide the comprehensive protection of legal rights of persons with disabilities as it did not
address concerns of the right to equality and the right to non- discrimination of persons with
disabilities. The Persons with Disabilities (Equal Opportunities, Protection of Rights and
Full Participation) Act, 1995 had come into enforcement on February 7, 1996. It is a
significant step which ensures equal opportunities for the people with disabilities and their
full participation in the nation building. The Act provides for both the preventive and
promotional aspects of rehabilitation like education, employment and vocational training,
reservation, research and manpower development, creation of barrier-free environment,
rehabilitation of persons with disability, unemployment allowance for the disabled, special
insurance scheme for the disabled employees and establishment of homes for persons with
severe disability etc.
Main Provisions of the Act,
a. Prevention and Early Detection of Disabilities
The PWD Act has very few provisions regarding the right to healthcare. Section 25 of the
PWD Act mandates the government to take appropriate measures for early detection,
screening and prevention of disabilities, provide training to staff at primary health centres,
organise or help organise awareness campaigns to disseminate information, and provide
pre- and post-natal care to both mothers and children.11
"25. Within the limits of their economic capacity and development, the appropriate
Governments and the local authorities, with a view to preventing the occurrence of
disabilities, shall:
(a) undertake or cause to be undertaken surveys, investigations and research concerning
the cause of occurrence of disabilities;
(b) promote various methods of preventing disabilities;

11 Ss. 25, The Persons With Disabilities Act, 1995.

7

(c) screen all the children at least once in a year for the purpose of identifying at-risk
cases;
(d) provide facilities for training to the staff at the primary health centres;
(e) sponsor or cause to be sponsored awareness campaigns and disseminate or cause to
be disseminated information for general hygiene, health and sanitation;
(f) take measures for pre-natal, pre-natal and post-natal care of mother and child;
(g) educate the public through the pre-schools, primary health centres, village level
workers and Aanganwadi workers;
(h) create awareness amongst the masses through television, radio and on the causes of
disabilities and the preventive measures to be adopted."
Section 42 directs the Government to formulate and implement schemes to provide aids
and appliances to persons with disabilities,12 "
42. The appropriate Governments shall by notification make schemes to provide aids, and
appliances to persons with disabilities Schemes for preferential allotment of land for
certain purposes." and lastly, Sections 66 and 67 of the PWD Act mandate the
government to undertake social security measures in the form of rehabilitation and
insurance schemes for persons with disabilities.13
"66. (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 Governments and local authorities
shall grant financial assistance to non-governmental organisations.
(3) The appropriate Governments and local authorities while formulating rehabilitation
policies shall consult the non-governmental organisations working for the cause of
persons with disabilities.

12 Ss. 43, The Persons With Disabilities Act, 1995.

13 Ss. 66 & 67, The Persons With Disabilities Act, 1995.
8

67. (1) The appropriate Government shall by notification frame an insurance scheme for
the benefit of its employees with disabilities.
(2) Notwithstanding anything contained in this section, the appropriate Government may
instead of framing an insurance scheme frame an alternative security scheme for its
employees with disabilities."
Thus, conceptually, the PWD Act covers the aspect of healthcare only under three
headings: (i) Early Detection and Prevention, (ii) Provision of Aids and Appliances, and
(iii) Rehabilitation. These provisions are limited and do not adequately guarantee the right
to health to persons with disabilities. The right to equal access to health and nondiscrimination in healthcare services finds no mention under the PWD Act, and the PWD
Acts definitional constraint applies only to public institutions rather than including
private institutions and hospitals, thus failing to fully comply with the UNCRPD.
The PWD Act also recognizes only 7 categories of disabilities, namely, blindness, low
vision, hearing impairment, loco motor disability, leprosy, mental illness and mental
retardation. Other categories of disability have not been recognized in the 1995 Act and
such a restrictive definition of disabilities affects the rights of persons with unrecognized
disabilities.
While leprosy is included as a disability under the law, the PWD Act fails to take positive
ameliorative measures for persons with leprosy. Leprosy still exists in a significant
percentage in India and this community suffers the greatest prejudice despite being
covered by the Act. There have been reported cases that women with leprosy have been
thrown out of hospitals because of the stigma attached; social bias is so great that positive
rights need to be provided to comprehensively cover the general health needs of persons
with leprosy.
b. Education

Every Child with disability shall have the rights to free education till the age of 18
years in integrated schools or special schools.

Appropriate transportation, removal of architectural barriers and restructuring of

modifications in the examination system shall be ensured for the benefit of children
with disabilities.

Children with disabilities shall have the right to free books, scholarships, uniform and
other learning material.

Special Schools for children with disabilities shall be equipped with vocational
training facilities.

Non-formal education shall be promoted for children with disabilities.

Teachers Training Institutions shall be established to develop requisite manpower.

Parents may move to an appropriate forum for the redressal of grievances regarding
the placement of their children with disabilities.
c. Employment
3% of vacancies in government employment shall be reserved for people with disabilities,
1% each for the persons suffering from:

Blindness or Low Vision

Hearing Impairment

Loco motor Disabilities & Cerebral Palsy

Suitable Scheme shall be formulated for

The training and welfare of persons with disabilities

The relaxation of upper age limit

Regulating the employment

Health and Safety measures and creation of a non- handicapping, environment in

places where persons with disabilities are employed

Government Educational Institutes and other Educational Institutes receiving grant from
Government shall reserve at least 3% seats for people with disabilities.
No employee can be sacked or demoted if they become disabled during service, although
they can be moved to another post with the same pay and condition. No promotion can be
denied because of impairment.
10

d. Non-Discrimination

Public building, rail compartments, buses, ships and air-crafts will be designed to give

easy access to the disabled people.

In all public places and in waiting rooms, the toilets shall be wheel chair accessible.
Braille and sound symbols are also to be provided in all elevators (lifts).

All the places of public utility shall be made barrier- free by providing the ramps.

e. Research and Manpower Development

Research in the following areas shall be sponsored and promoted

Prevention of Disability

Rehabilitation including community based rehabilitation

Development of Assistive Devices.

Job Identification

On site Modifications of Offices and Factories

Financial assistance shall be made available to the universities, other institutions of

higher learning, professional bodies and non-government research- units or
institutions, for undertaking research for special education, rehabilitation and
manpower development.

f. Affirmative Action
Aids and Appliances shall be made available to the people with disabilities.
Allotment of land shall be made at concessional rates to the people with disabilities for:

House

Business

Special Recreational Centres

Special Schools

11

Research Schools

Factories by Entrepreneurs with Disability,

g. Social Security
Financial assistance to non-government organizations for the rehabilitation of persons
with disabilities.

Insurance coverage for the benefit of the government employees with disabilities.

Unemployment allowance to the people with disabilities who are registered with the
special employment exchange for more than a year and could not find any gainful
occupation.

h. Grievance Redressal

In case of violation of the rights as prescribed in this act, people with disabilities may
move an application to the Chief Commissioner for Persons with Disabilities in the

Centre, or
Commissioner for Persons with Disabilities in the State.

THE RIGHTS OF PERSONS WITH DISABILITIES BILL, 2014

The Bill was introduced in the Rajya Sabha on February 7, 2014 by the Minister of Social
Justice and Empowerment, Mallikarjun Kharge. The Bill was referred to the Standing
Committee on Social Justice and Empowerment on September 16, 2014. The Committee
is scheduled to submit its report during the Budget Session 2015.
Highlights of the Bill
The Bill replaces the Persons with Disabilities (Equal Opportunities, Protection of

Rights and Full Participation) Act, 1995. Instead of seven disabilities specified in the Act,
the Bill covers 19 conditions.
Persons with at least 40% of a disability are entitled to certain benefits such as

reservations in education and employment, preference in government schemes, etc.

12

 The Bill confers several rights and entitlements to disabled persons. These include

disabled friendly access to all public buildings, hospitals, modes of transport, polling
stations, etc.
In case of mentally ill persons, district courts may award two types of guardianship. A

limited guardian takes decisions jointly with the mentally ill person. A plenary guardian
takes decisions on behalf of the mentally ill person, without consulting him.
Violation of any provision of the Act is punishable with imprisonment up to six

months, and/or fine of Rs 10,000. Subsequent violations carry a higher penalty. Key
Issues and Analysis The Bill is being brought in to fulfil obligations under an
international treaty. The question is whether it is appropriate for Parliament to impose
legal and financial obligations on states and municipalities with regard to disability,
which is a State List subject.
The Financial Memorandum does not provide any estimate of the financial resources

required to meet obligations under the Bill.

The Bill states that violation of any provision in the Act will attract imprisonment

and/or fine. Given the widespread obligations (such as making all polling booths
accessible to the disabled), many acts of omission or commission could be interpreted as
criminal offences.
In extraordinary situations district courts may appoint plenary guardians for

mentally ill persons. The Bill does not lay down principles for such determination, in a
consistent manner, across various courts. The Bill overrides the Mental Health Act, 1987
but the safeguards against misuse of powers by guardians are lower.
The Bill is inconsistent with other laws in some cases. These include conditions for

termination of pregnancy and the minimum penalty for outraging the modesty of a
woman.
PART A: HIGHLIGHTS OF THE BILL
1. Context According to the Census of India, 2011 disabled persons accounted for 2.21%
of Indias population. Of these, 20.3% have a movement-related disability, 18.9% are
those with hearing disabilities and 18.8% with vision related disabilities.

13

2. Currently, the Persons with Disabilities (Equal Opportunities, Protection of Rights and
Full Participation) (PWD) Act, 1995 specifies seven conditions as disabilities and makes
special provisions for disabled persons with regard to their rehabilitation, and
opportunities for employment and education.
3. In 2007, India became a signatory to the United Nations Convention on the Rights of
Persons with Disabilities (UNCRPD). The UNCRPD requires signatory states to make
appropriate changes in law and policy to give effect to rights of disabled persons.
4. Apart from the PWD Act, other laws that govern various aspects of disabilities include
the Mental Health Act, 1987, the National Trust for the Welfare of Persons with Autism,
Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999 and the
Rehabilitation Council of India Act, 1992. In 2010, the Ministry of Social Justice and
Empowerment constituted an expert committee under Dr. Sudha Kaul to draft a new Bill
for persons with disabilities.
5. The committee submitted a Draft Bill in 2011 that proposed to replace the PWD Act
and addressed rights and entitlements for disabled persons. Subsequently on February 7,
2014 the Rights of Persons with Disabilities Bill, 2014 was introduced in Rajya Sabha
and referred to the Standing Committee on Social Justice and Empowerment on
September 16, 2014.
Key Features
The Bill replaces the Persons with Disabilities (Equal Opportunities, Protection of Rights
and Full Participation) Act, 1995.
The Bill includes the following 19 conditions under disability: autism spectrum disorder;
low vision; blindness; cerebral palsy; deaf blindness; hemophilia; hearing impairment;
leprosy cured person; intellectual disability; mental illness; locomotor disability;
muscular dystrophy; multiple sclerosis; specific learning disabilities; speech and language
disability; sickle cell disease; thalassemia; chronic neurological conditions and multiple
disability. The Bill allows the central government to notify any other condition as a
disability.
Persons with benchmark disabilities are defined as those certified to have at least 40 per
cent of the disabilities specified above. Rights of persons with disabilities.

14

Persons with disabilities shall not be discriminated on grounds of their disability unless it
is shown that the specific act is appropriate to achieve a legitimate aim. Persons with
disabilities shall have the right to equality, personal liberty and to live in a community.
They will not be obliged to live in any specific arrangement and shall have access to
residential services and community support.
The Election Commission (centre and state) has to ensure that polling stations and all
electoral materials are accessible to persons with disabilities. Central and state
governments have to ensure that all public documents are in accessible formats.
The Disaster Management Authority (centre and state) will take necessary steps to include
disabled persons in its disaster management activities for their safety and protection.
Special provisions for persons with benchmark disabilities.
Education: Children between the ages of six to 18 years, with a benchmark disability,
have the right to free education in a neighbourhood school or special school if required.
All government and government aided institutions of higher education are required to
reserve at least five per cent of seats for persons with benchmark disabilities. For
admission in higher education institutions, they will be allowed relaxation in the upper
age limit, by five years.
Employment: Five per cent of government owned or controlled establishments shall be
reserved for persons with benchmark disabilities. One per cent of this must be reserved
for persons with (i) blindness and low vision; (ii) hearing and speech impairment; (iii)
locomotor disability; (iv) autism, intellectual disability and mental illness; (v) multiple
disabilities. The government may exempt any establishment from this provision.
The central, state and local governments shall provide incentives to the private sector to
ensure that at least five per cent of their work force is composed of persons with
benchmark disability.
Five per cent reservation to be provided for persons with benchmark disabilities in (i)
allotment of agricultural land and housing in all relevant schemes and programmes; (ii)
poverty alleviation schemes (with priority to women with benchmark disabilities); and
(iii) allotment of land on concessional rate for purposes of business, enterprise, etc.
Guardianship of mentally ill persons

15

If a district court determines that a mentally ill person is unable to take care of himself or
of taking legally binding decisions, it may assign limited guardianship for such a person.
A limited guardian will take joint decisions with the mentally ill person.
In extraordinary situations, where limited guardianship cannot be awarded, the district
court can award plenary guardianship where the guardian takes legally binding decisions
for the mentally ill person. The guardian need not consult with, or determine the will or
preference of the mentally ill person. Authorities established under the Bill
National and State Commissions for persons with disabilities: The central government
shall constitute a National Commission, and state governments shall constitute a State
Commission each, for disabled persons. The Commissions will be required to: (i) identify
any laws, policies or programmes that are inconsistent with the Act; (ii) inquire into
matters relating to deprivation of rights and safeguards available to disabled persons and
recommend appropriate remedial measures; (iii) monitor implementation of the Act and
utilization of funds disbursed by governments for the benefit of disabled persons, etc.
Central and State Advisory Boards on disability: The central government shall constitute
a Central Advisory Board, and state governments shall constitute a State Advisory Board
each, for disability matters. State governments shall also constitute District-Level
Committees. The functions of these advisory boards will include: (i) advising the
government on policies and programmes with respect to disability; (ii) developing a
national/state policy concerning persons with disabilities; (iii) recommending steps to
ensure accessibility, reasonable accommodation, non-discrimination, etc. Offences and
penalties
Any person who violates provisions of the Act, or any rule or regulation made under it,
shall be punishable with imprisonment up to six months and/or a fine of Rs 10,000, or
both. For any subsequent violation, imprisonment of up to two years and/or a fine of Rs
50,000 to Rs five lakh can be awarded.
Whoever intentionally insults or intimidates a person with disability, or sexually exploits
a woman or child with disability, shall be punishable with imprisonment between six
months to five years and fine.

16

State governments shall notify a Sessions Court to be a Special Court, in each district, to
try offences under the Act. This shall be done with the concurrence of the Chief Justices
of the relevant High Courts.
PART B: KEY ISSUES AND ANALYSIS

The Bill is being brought in to fulfil obligations under the UNCRPD that was ratified
by India in 2007. Parliaments jurisdiction to enact this Bill flows from Article 253 of
the Constitution which allows Parliament to enact legislation to give effect to
international agreements. Parliament has the power to enact this Bill despite the fact
that relief of the disabled comes under Entry no. 9 of the State List. This presents two
issues: Obligations imposed on states/municipalities to implement the Bill Though it
is clear that the Constitution allows Parliament to pass this Bill, the question is
whether it is appropriate for it to impose widespread legal obligations on states and
municipalities with regard to disability, which is a State List subject. Examples of
some of the obligations covered by the Bill are: (i) providing free education to a
person with benchmark disability till 18 years of age; (ii) barrier free access to all
parts of a hospital/health care centre run or aided by government; (iii) ensuring that all
existing public buildings are made accessible within five years; (iv) all public
documents are in accessible format; and (v) retrofitting of vehicles and accessibility of
bus stops, railway stations and airports for disabled persons. Clauses 30, 24(1)(b), 44,

11(4)(a), 40(1)(b).
The Rights of Persons with Disabilities Bill, 2014 .Financial Memorandum does not
estimate expenses under the Bill As explained above, the Bill mandates central and
state governments to provide various facilities and services to disabled persons that
could have financial implications for the state and local governments. However, the
Financial Memorandum of the Bill does not provide any estimate of the financial
resources required to meet obligations under the Bill. It also does not provide an
estimate of the expenditure expected to be incurred by the centre or states, or the
manner of sharing of funds between the centre and states. The memorandum states
since disability is a state subject under the Constitution, it is also expected that over
time the states will also contribute substantially to the implementation of the
provisions of the Bill. It could be argued that without allocating adequate funds the

implementation of the Bill could be hindered.

Criminal offences specified in the Bill Penalties including imprisonment for violating
general provisions, the Bill states that any person who violates provisions of the Act,
17

or any rule or regulation made under it, shall be punishable with imprisonment up to
six months, and/or fine of Rs 10,000. For any subsequent violation, imprisonment of

up to two years and/or a fine of Rs 50,000 to Rs five lakh can be awarded.

These provisions present two issues: Firstly, the Bill does not identify specific acts
that would constitute a criminal offence but has a general provision that states that
violation of any provision of the Act would attract imprisonment and/or fine. For
example, the Bill states that a person with disabilities will have the right to live in the
community. This implies that violating this provision could attract imprisonment for
up to six months and/or a fine of up to Rs 10,000. However, the Bill does not specify
what actions would constitute violating the right of disabled persons to live in a
community. For practical reasons, some provisions of the Bill will need to be
implemented in a phased manner. However, once the Bill comes into force, violating
its provisions would be a criminal offence. For example, the Bill requires the Election
Commission to ensure that polling booths are accessible to all disabled persons.
Would this imply that if some polling booths do not have facilities such as ramps, all
materials in Braille, etc. by the time the Bill comes into force, the Chief or State
Election Commissioner could be criminally charged? Similarly, the appropriate
government is required to provide all public documents in formats that are accessible
to disabled persons. Would this mean that if there is a government record that is not
accessible to a disabled person, the officer in charge of the government department
would be criminally liable? Secondly, under the Bill any violation of a rule or
regulation is treated as a criminal offence. The rules and regulations may specify
certain provisions which are not explicitly mentioned in the Bill. It could be argued
that the principal Act should clearly state all actions that would constitute a criminal

offence and not delegate these to rules and regulations.

Guardianship of mentally ill persons:- The Bill provides two types of guardianship for
mentally ill persons incapable of taking care of themselves and of taking any legally
binding decisions on their own. A limited guardian will take all legally binding
decisions along with the mentally ill person. A plenary guardian can be appointed to
take all legally binding decisions for the mentally ill person and is under no obligation
to consult him or consider his will or preference. The Bill overrides the Mental Health
Act, 1987 with respect to guardianship provisions. This may result in the safeguards
against misuse of guardianship, being lowered. There are three issues related to
guardianship: Safeguards for guardianship lower than Mental Health Act, 1987. The
safeguards in the Bill with regard to appointment and power of guardians for mentally
18

ill persons are lower than those in the Mental Health Act, 1987. Under the Bill, a
plenary guardian has no legal obligation to determine the will and preference of the
mentally ill person while taking decisions on his behalf. Such a provision could allow
circumstances in which the guardian misuses his power and acts against the interest of
the mentally ill person. In contrast, the Mental Health Act, 1987 specifies the
reporting requirements to be fulfilled by the guardian when taking care of the
mentally ill person or managing his property. For example, Sections 59, 60 and 71 of
the 1987 Act require the guardian (a) to give maintenance to the mentally ill person
and his dependent family; (b) submit annual reports to the district court of the
financial accounts of the mentally ill person; and (c) to obtain Financial Memorandum
Clauses 102, 103 Clause 4 Clause 10 Clause 11(4) Clause 13(1) The Rights of
Persons with Disabilities Bill, permission of the district court if the guardian wants to
mortgage, lease, sell, exchange immovable property of the mentally ill person. The
Bill does not envisage such safeguards. Principles for determining extraordinary
situations not specified, the appointment of a plenary guardian is dependent on
finding of an extraordinary situation by the district court. However, the Bill does not
provide the principles to be used in determining what could qualify as an
extraordinary situation. Therefore, different district courts could use different criteria
to award plenary guardianship. This implies that similar cases may be awarded either
limited or plenary guardianship depending on the district court. No provision for
removal or termination of guardianship Mental illness or incapacity can prevail in a
person temporarily or for short periods of time. The Bill does not provide for the
removal or termination of guardianship in case the mentally ill person develops the
capacity to take decisions. This is different from the provisions of the Mental Health
Act, 1987. Section 69 of that Act provides for removal of guardians by the district

court, if it finds sufficient cause to do so.

Definition of appropriate government:- The Bill defines appropriate government in
terms of ownership of establishments. If an establishment is financed by the centre,
then the central government is the appropriate government and if it is financed by the
state, then the state government is the appropriate government. This definition
presents no difficulty in terms of obligations related to employment and education
envisaged in the Bill. However, the Bill places certain other obligations on the
appropriate government which could lead to ambiguity in terms of which government
would discharge these obligations. For example, appropriate governments are
required to ensure that persons with disabilities (i) are not obliged to live in any
19

particular living arrangement; (ii) are protected from incidents of abuse, violence and
exploitation, and provided legal remedies against the same; (iii) shall have the right to
access any court, tribunal, commission having judicial or investigative powers; (iv)
schemes are formulated to provide them with support during natural and man-made
disasters, etc. It is unclear which government will be responsible for fulfilling such
obligations. Provisions of the Bill inconsistent with existing laws Certain provisions
of the Bill are at variance with existing laws. This may give rise to ambiguity with

respect to which laws will prevail in a given situation.

Penalty for outraging the modesty of a woman: The Indian Penal Code, 1860 The Bill
punishes the offence of outraging the modesty of a woman with disability, with
imprisonment of six months to five years and a fine. Section 354 of the Indian Penal
Code, 1860 penalises the offence of outraging the modesty of any woman with
imprisonment of one year to five years and fine. This implies that the Bill is lowering
the minimum penalty for offenders against women with disability, as compared to any

other woman.
Termination of pregnancy: The Medical Termination of Pregnancy Act, 1971:- The
Bill penalises anybody who performs, conducts or directs any medical procedure to
terminate the pregnancy of a woman with disability, without her consent. However,
the Bill makes an exception in the cases of severe disability. It states that in such cases
the womans consent is not mandatory as long as the opinion of a registered medical
practitioner and the consent of her guardian have been taken. Section 3(2)(b) of the
Medical Termination of Pregnancy (MTP) Act, 1971 allows for the termination of
pregnancy of any woman between 12 to 20 weeks of pregnancy provided that two
registered medical practitioners are of such opinion. It could be argued that the
safeguards against termination of pregnancy existing in the MTP Act, 1971
(requirement of opinion of two medical practitioners) are being lowered by the Bill
(requirement of one medical practitioner only). Government establishments exempt
from certificate of registration. The Bill requires every institution for persons with
disabilities to register with a competent authority appointed by the state government.
It also specifies the process for applying, receiving a certificate of registration,
grounds for the revocation of registration and an appeals procedure. However, the Bill
exempts institutions established or Clause 2(b) Clauses 4(2)(a), 6(1)(a), 11(1), 23(3)
(c) Clause 105(b) Clause 105(f) Clause 53 The Rights of Persons with Disabilities
Bill, 2014 maintained by the central or state government from registration

20

requirements. It is unclear why government institutions do not need to adhere to

registration norms applicable to others.

Comparison of the Bill with PWD Act, 1995 and Draft Bill, 2011:- The proposed Bill
replaces the PWD Act. In 2010 the government appointed a committee chaired by Dr.
Sudha Kaul, which submitted a Draft Bill in 2011. Subsequently, the Rights of
Persons with Disabilities Bill, 2014 was introduced in Rajya Sabha in February 2014.
The table below provides a comparison of some of the key features of the PWD Act,

Draft Bill and the Rights of Persons with Disabilities Bill:

Table 1: Comparison between 1995 Act, 2011 Draft Bill and Rights of Persons with

Disabilities Bill, 2014.

Provision/clause PWD Act, 1995 Draft Bill, 2011 (prepared by Sudha Kaul
Committee) Rights of Persons with Disabilities Bill, 2014 Number of disabilities
covered 20 (includes dwarfism which is not covered in the 2014 Bill).

PWD Act,1995
a)

Draft Bill, 2011

RPDB, 2014

Extent of disability to be Rights and benefits to apply to Rights apply to all persons

covered under the law At least all persons with disabilities with disabilities irrespective of
40% of a disability specified in irrespective
the Act.

of

extent

of extent of disability.

disability.

b) Person with 40% of a Intensive

physical

or Same as Draft Bill (only

specified disability can avail of psychological support, which persons

with

benchmark

benefits such as reservation in may be required by a person disabilities may have high
education, employment, other with disability for participating support needs).
schemes, etc. High support in daily activities of life, etc.
needs No provision.

Care-giver

allowance

to

persons with disabilities having

high support needs.
c)
Employment:
government

3%

in

Employment:

organisations government

7%

in Employment:

5%

organisations government

in

organisations

(within that 1% for specific (bands created amongst all (within that 1% for specific
21

disabilities). Education: 3%

disabilities and each entitled to disabilities). Education: 5% in

1% within this). Education: 6% higher education institutions

in

each

course

education.

in

higher (and upper age relaxation of

five years) and free elementary

education for those between

six to 18 years of age (six to 14
years under Right to Education
Act, 2009).
d)
Guardianship: No provision in All existing plenary guardians Addresses
PWD

Act.

guardianship

of

Guardianship to be converted to limited mentally ill persons in terms of

covered under the National guardians for all persons with limited

and

Trust Act, 1999 and the Mental disability.

guardianship.

Health Act, 1987.

categories

plenary
For

of

other

disability,

existing laws will apply.

e)
Legal

provisions:

Commissioner,
Commissioners
with

Chief Disability Rights Tribunals to National Commission to have

and be set up at centre, and each powers of a Civil Court.

for

disabilities,

persons state and district.

Session Courts to be notified as

redress

Special

complaints by aggrieved parties

Courts

governments.

and act as Civil Courts.

EDUCATION LAW FOR THE DISABLED

The right to education is available to all citizens including the disabled. Article 29(2)
of the Constitution provides that no citizen shall be denied admission into any
educational institution maintained by the State or receiving aid out of State funds on
the ground of religion, race, caste or language.

Article 45 of the Constitution directs the State to provide free and compulsory
education for all children (including the disabled) until they attain the age of 14 years.
No child can be denied admission into any education institution maintained by the
22

by

state

State or receiving aid out of State funds on the ground of religion, race, casteor
language.
HEALTH LAWS

Article 47 of the constitution imposes on the Government a primary duty to raise the
level of nutrition and standard of living of its people and make improvements in
public health - particularly to bring about prohibition of the consumption of
intoxicating drinks and drugs which are injurious to ones health except for medicinal
purposes.

The health laws of India have many provisions for the disabled. Some of the Acts
which make provision for health of the citizens including the disabled may be seen in
the Mental Health Act, 1987 (See later in the chapter).

FAMILY LAWS
Various laws relating to the marriage enacted by the Government for DIFFERENT
communities apply equally to the disabled. In most of these Acts it has been provided that the
following circumstances will disable a person from undertaking a marriage. These are:

Where either party is an idiot or lunatic,

Where one party is unable to give a valid consent due to unsoundness of mind or is
suffering from a mental disorder of such a kind and extent as to be unfit for marriage
for procreation of children

Where the parties are within the degree of prohibited relationship or are sapindas of
each other unless permitted by custom or usage.

Where either party has a living spouse

The rights and duties of the parties to a marriage whether in respect of disabled or nondisabled persons are governed by the specific provisions contained in different marriage Acts,
such as the Hindu Marriage Act, 1955, the Christian Marriage Act, 1872 and the Parsi
Marriage and Divorce Act, 1935. Other marriage Acts which exist include; the Special
Marriage Act, 1954 (for spouses of differing religions) and the Foreign Marriage Act, 1959
23

(for marriage outside India). The Child Marriage Restraint Act, 1929 as amended in 1978 to
prevent the solemnization of child marriages also applies to the disabled. A Disabled person
cannot act as a guardian of a minor under the Guardian and
Wards Act, 1890 if the disability is of such a degree that one cannot act as a guardian of the
minor. A similar position is taken by the Hindu Minority and Guardianship Act, 1956, as also
under the Muslim Law

SUCCESSION LAWS FOR THE DISABLED

Under the Hindu Succession Act, 1956 which applies to Hindus it has been specifically
provided that physical disability or physical deformity would not disentitle a person from
inheriting ancestral property. Similarly, in the Indian Succession Act, 1925 which applies in
the case of intestate and testamentary succession, there is no provision which deprives the
disabled from inheriting an ancestral property. The position with regard to Parsis and the
Muslims is the same. In fact a disabled person can also dispose his property by writing a
will provided he understands the import and consequence of writing a will at the time when
a will is written. For example, a person of unsound mind can make a Will during periods of
sanity. Even blind persons or those who are deaf and dumb can make their Wills if they
understand the import and consequence of doing it.
LABOUR LAWS FOR THE DISABLED
The rights of the disabled have not been spelt out so well in the labour legislations but
provisions which cater to the disabled in their relationship with the employer are contained in
delegated legislations such as rules, regulations and standing orders.
JUDICIAL PROCEDURES FOR THE DISABLED
Under the Designs Act, 2000 which deals with the law relating to the protection of designs
any person having jurisdiction in respect of the property of a disabled person (who is
incapable of making any statement or doing anything required to be done under this Act) may
be appointed by the Court under Section 74, to make such statement or do such thing in the
name and on behalf of the person subject to the disability. The disability may be lunacy or
other disability.
INCOME TAX CONCESSIONS
24

Relief for Handicapped

Section 80 DD: Section 80 DD provides for a deduction in respect of the expenditure

incurred by an individual or Hindu Undivided Family resident in India on the medical
treatment (including nursing) training and rehabilitation etc. of handicapped
dependants. For officiating the increased cost of such maintenance, the limit of the
deduction has been raised from Rs.12000/- to Rs.20000/-.

Section 80 V: A new section 80V has been introduced to ensure that the parent in
whose hands income of a permanently disabled minor has been clubbed under Section
64, is allowed to claim a deduction upto Rs.20000/- in terms of Section 80 V.

Section 88B: This section provides for an additional rebate from the net tax payable
by a resident individual who has attained the age of 65 years. It has been amended to
increase the rebate from 10% to 20% in the cases where the gross total income does
not exceed Rs.75000/- (as against a limit of Rs.50000/- specified earlier).

The persons with disabilities (PWD) (equal opportunities, protection of rights and full
participation) act, 1995
UN DECLARATION ON THE RIGHTS OF MENTALLY RETARDED PERSONS
This declaration on the rights of mentally retarded persons calls for national and
international actions so as to ensure that it will be used as a common basis and frame of
reference for the protection of their rights:
1. The mentally retarded person has, to the maximum degree of feasibility, the same
rights as under human beings.
2. The mentally retarded person has a right to proper medical care, physical therapy and
to such education, training, rehabilitation and guidance which will enable him to
further develop his ability, and reach maximum potential in life.
3. The mentally retarded person has a right of economic security and of a decent
standard of living. He/she has a right to perform productive work or to participate in
any other meaningful occupation to the fullest possible extent of capabilities.
4. Whenever possible, the mentally retarded person should live with his own family or
with his foster parents and participate in different forms of community life. The
25

family with which he lives should receive assistance. If an institutional care becomes
necessary then it should be provided in surroundings and circumstances as much
closer as possible to that of a normal lifestyle.
5. The mentally retarded person has a right to a qualified guardian when this is required
in order to protect his personal well-being or interests.
6. The mentally retarded person has a right to get protection from exploitation, abuse
and a degrading treatment. If prosecuted for any offence; he shall have right to the due
process of law, with full recognition being given to his degree of mental
responsibility.
7. Whenever mentally retarded persons are unable (because of the severity of their
handicap) to exercise their rights in a meaningful way or it should become necessary
to restrict or deny some or all of their rights then the procedure(s) used for that
restriction or denial of rights must contain proper legal safeguards against every form
of abuse. This procedure for the mentally retarded must be based on an evaluation of
their social capability by qualified experts, and must be subject to periodic review and
a right of appeal to the higher authorities.
THE MENTAL HEALTH ACT, 1987
The Mental Health Act 1987 provides for admission of mentally ill persons to psychiatric
hospitals or psychiatric nursing homes, facilities for establishing guardianship or custody of
mentally ill persons, and the establishment of Central Authority and State Authorities for
Mental Health Services. It also regulates the powers of the Government towards establishing,
licensing and controlling psychiatric hospitals and psychiatric nursing homes for mentally ill
persons. Although the Mental Health Act provides for psychiatric hospitals and nursing
homes, it does not make any mention of the rights to the mentally ill to dignity and treatment
with consent. This is largely due to there being no legislation in the country recognizing the
right to equality and equal treatment of persons with disabilities.
All the above legislations address certain specific themes without any of them providing the
core rights of equality and non-discrimination. Apart from existing legislation, there are
numerous bills and pending legislation on disability. A draft Mental Health Care Bill, 2013

26

has been prepared by the Government.14 There are criticisms as to whether having a separate
law for persons with psychosocial disabilities would be a good idea because this group is
always marginalized within the disability movement and the separate law would reinforce
such marginalization.
Similarly, there is a draft Rights of Persons with Disabilities Bill, 2014 introduced by the
Ministry of Social Justice and Empowerment in the Rajya Sabha that seeks to replace the
Persons with Disabilities Act 1995.15 The government seeks to bring the existing legislation
in India on disability in line with the UNCRPD to which India is a signatory. With such a new
legislation, policy-makers and disability rights activists are actively attempting to ensure that
the social model of disability is adopted by the legislation, thereby aiming to change attitudes
to disability in society. There is also a proposed draft National Health Bill, 2009, which
provides an overarching legal framework recognizing the right to health.16
Under the Mental Health Act, 1987 mentally ill persons are entitled to the following rights:
1. A right to be admitted, treated and cared in a psychiatric hospital or psychiatric
nursing home or convalescent home established or maintained by the Government or
any other person for the treatment and care of mentally ill persons (other than the
general hospitals or nursing homes of the Government).
2. Even mentally ill prisoners and minors have a right of treatment in psychiatric
hospitals or psychiatric nursing homes of the Government.
3. Minors under the age of 16 years, persons addicted to alcohol or other drugs which
lead to behavioural changes, and those convicted of any offence are entitled to
admission, treatment and care in separate psychiatric hospitals or nursing homes
established or maintained by the Government.
14 The Mental Health Care Bill 2013, available at
http://www.prsindia.org/administrator/uploads/general/1376983253~~mental%20health%20care
%20bill%202013 .pdf, last seen on 1/11/2015.
15 The Rights of Persons with Disabilities Bill 2014 available at
http://www.prsindia.org/uploads/media/Person%20with%20Disabilities/The%20Right%20of
%20Persons%20with %20Disabilities%20Bill.pdf, last accessed on 1/11/2015.
16 The National Health Bill 2009, available at
http://www.prsindia.org/uploads/media/Draft_National_Bill.pdf, last seen on 1/11/2015.
27

4. Mentally ill persons have the right to get regulated, directed and co-ordinated mental
health services from the Government. The Central Authority and the State Authorities
set up under the Act have the responsibility of such regulation and issue of licenses
for establishing and maintaining psychiatric hospitals and nursing homes.
5. Treatment at Government hospitals and nursing homes mentioned above can be
obtained either as in patient or on an out-patients basis.
6. Mentally ill persons can seek voluntary admission in such hospitals or nursing homes
and minors can seek admission through their guardians. Admission can be sought for
by the relatives of the mentally ill person on behalf of the latter. Applications can also
be made to the local magistrate for grants of such (reception) orders.
7. The police have an obligation to take into protective custody a wandering or neglected
mentally ill person, and inform his relative, and also have to produce such a person
before the local magistrate for issue of reception orders.
8. Mentally ill persons have the right to be discharged when cured and entitled to leave
the mental health facility in accordance with the provisions in the Act.
9. Where mentally ill persons own properties including land which they cannot
themselves manage, the district court upon application has to protect and secure the
management of such properties by entrusting the same to a Court of Wards, by
appointing guardians of such mentally ill persons or appointment of managers of such
property.
10. The costs of maintenance of mentally ill persons detained as in-patient in any
government psychiatric hospital or nursing home shall be borne by the state
government concerned unless such costs have been agreed to be borne by the relative
or other person on behalf of the mentally ill person and no provision for such
maintenance has been made by order of the District Court. Such costs can also be
borne out of the estate of the mentally ill person.
11. Mentally ill persons undergoing treatment shall not be subjected to any indignity
(whether physical or mental) or cruelty. Mentally ill persons cannot be used without
their own valid consent for purposes of research, though they could receive their
diagnosis and treatment.

28

12. Mentally ill persons who are entitled to any pay, pension, gratuity or any other form
of allowance from the government (such as government servants who become
mentally ill during their tenure) cannot be denied of such payments. The person who
is in-charge of such mentally person or his dependents will receive such payments
after the magistrate has certified the same.
13. A mentally ill person shall be entitled to the services of a legal practitioner by order of
the magistrate or district court if he has no means to engage a legal practitioner or his
circumstances so warrant in respect of proceedings under the Act.
THE REHABILITATION COUNCIL OF INDIA ACT, 1992
The Rehabilitation Council of India Act, 1992 establishes the Rehabilitation Council of India,
which lays down standards and qualifications for all rehabilitation professionals in the
country, provides for the recognition of rehabilitation professionals, prescribes standards for
rehabilitation courses and recognition for courses offered by universities and institutions and
lays down standards of professional conduct and ethics for rehabilitation professionals.
However, under the Rehabilitation Council of India mandate, mental health illness has not
been included.
This Act provides guarantees so as to ensure the good quality of services rendered by various
rehabilitation personnel. Following is the list of such guarantees:
1. To have the right to be served by trained and qualified rehabilitation professionals
whose names are borne on the Register maintained by the Council
2. To have the guarantee of maintenance of minimum standards of education required
for recognition of rehabilitation qualification by universities or institutions in India.
3. To have the guarantee of maintenance of standards of professional conduct and ethics
by rehabilitation professionals in order to protect against the penalty of disciplinary
action and removal from the Register of the Council
4. To have the guarantee of regulation of the profession of rehabilitation professionals by
a statutory council under the control of the central government and within the bounds
prescribed by the statute
THE NATIONAL TRUST for welfare of persons with autism, cerebral palsy, mental
retardation and multiple disabilities act, 1999
29

1. The Central Government has the obligation to set up, in accordance with this Act and
for the purpose of the benefit of the disabled, the National Trust for Welfare of
Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disability at
New Delhi.
2. The National Trust created by the Central Government has to ensure that the objects
for which it has been set up as enshrined in Section 10 of this Act have to be fulfilled.
3. It is an obligation on part of the Board of Trustees of the National Trust so as to make
arrangements for an adequate standard of living of any beneficiary named in any
request received by it, and to provide financial assistance to the registered
organizations for carrying out any approved programme for the benefit of disabled.
4. Disabled persons have the right to be placed under guardianship appointed by the
Local Level Committees in accordance with the provisions of the Act. The guardians
so appointed will have the obligation to be responsible for the disabled person and
their property and required to be accountable for the same.
5. A disabled person has the right to have his guardian removed under certain conditions.
These include an abuse or neglect of the disabled, or neglect or misappropriation of
the property under care.
6. Whenever the Board of Trustees are unable to perform or have persistently made
default in their performance of duties, a registered organization for the disabled can
complain to the central government to have the Board of Trustees superseded and/or
reconstituted.
7. The National Trust shall be bound by the provisions of this Act regarding its
accountability, monitoring finance, accounts and audit.
Case Law on the Right to Health
The right to health has been held to be a fundamental right in India by the Supreme Court
under the ambit of the right to life protected under Article 21 of the constitution. In
Consumer Education & Research Centre v. Union of India 17 the Supreme Court held that
the expression of the term life as understood in Article 21 of the Constitution includes a
much wider meaning of the term life, which includes the right to livelihood, better standard
17 AIR 1995 SC 922 .
30

of life, and hygienic conditions. It also held that the right to health is a fundamental right
under Article 21, read with Articles 39(e), 41, 43, 48A.
In Paramanand Katara v. UOI,18 the Supreme Court held the right to emergency medical
treatment as an important facet of the right to health. It held that every medical practitioner
was obligated to treat patients considered as emergency cases and that every individual has
the right to prompt and effective medical treatment, at a time of medical emergency. In
Paschim Banga Khet Mazdoor Samity and Others v. State of West Bengal 19 the Court held
that, by virtue of Article 21 of the Constitution of India, State Governments were obligated to
provide adequate and proper medical facilities to all. The Court thus recognised the right to
proper and adequate health care facilities as a right integral to the right to life under Article
21. It is thus an obligation of the State to ensure that persons with disability have access to
quality healthcare.
In Suchita Srivastava v. Chandigarh Administration,20 the Supreme Court had to decide
whether a woman with mild retardation who was pregnant after a rape had autonomy to
decide against an abortion, and to what extent. By stating that the State does have an
important and legitimate interest in preserving and protecting the health of the pregnant
woman,21 the Court affirmed the sexual autonomy of the individual regarding her
reproductive choices. Further, the Court also articulated the responsibility of the State to
provide adequate healthcare to persons with disability.
The right to public health care was decided in the celebrated South African constitutional
court decision in Minister of Health v. Treatment Action Campaign22, which revolved
around access to the drug Nevirapine that prevented the transmission of HIV from mother to
child. The Constitutional Court of South Africa held that right to access public healthcare in
the South African Constitution placed the government under a constitutional obligation to

18 AIR 1989 SC 2039.

19 AIR 1996 SC 2426.
20 AIR 2010 SC 235.
21 Ibid.
22 2002 (5) SA 703.
31

achieve the progressive realization of this right. The Court ordered that the drug be made
available at all healthcare centres of the country thereby making it much more accessible.
CHAPTER 3
DIMENSIONS AND PROBLEMS OF EQUAL ACCESS
It is an established fact that people with disabilities use public health services more than
people without disabilities.23 Not only do they need health care and treatment for their
disabilities but also many people with disability need to take care of secondary health
conditions, like pressure sores, fatigue, pain, etc. for which they need medical care. 24 Thus
ironically while people with disabilities use the health care system much more than others,
there exists qualitatively poor health care services and ineffective access to health care
facilities for them. The lack of specially trained health care practitioners, doctors and staff
coupled with poor infrastructure and ill equipped hospitals and clinics, spells a very bleak
picture for persons with disabilities seeking treatment and medical care specially suited to
their needs. Added to this are issues of both physical and financial access, as well as
discrimination and a failure to provide preventative and rehabilitative care.
Accessibility needs to be made mandatory as a requirement of reasonable accommodation.
The underlying justification for reasonable accommodation provisions lies in the social
disability model a model that focuses on how environmental barriers and not the persons
disability is the cause of impediments. In other words, it is not a wheelchair users disability
that prevents him or her from accessing modes of transport, but instead it is the buss lack of
being designed as wheelchair friendly, that causes the inaccessibility.
In the case of Syed Bashir-ud-din Qadri v. Nazir Ahmed Shah and Others25 the Supreme
Court recognized for the first time, the concept of reasonable accommodation. The Supreme
Court stated that the doctrine of reasonable accommodation includes the provision of aids and
appliances to enable a person with disability to carry out their daily duties effectively. The

23 The Current State of Health Care for People with Disabilities, National Council for Disability,
http://www.ncd.gov/publications/2009/Sept302009 last seen on 1/11/2015.
24 The Current State of Health Care for People with Disabilities, National Council for Disability,
http://www.ncd.gov/publications/2009/Sept302009 last seen on 1/11/2015.
25 2010 3 SCC 603.
32

same concept ought to be applied to providing health care that is accessible to all persons
with disabilities.
Accessibility, or lack thereof, can be obvious, invisible, and at times insidious in preventing
persons with disabilities from enjoying their right to health. It is an issue in nearly all levels
of the healthcare system. Although questions of accessibility are complex and nearly
inextricable from wider societal and administrative problems, we have attempted here to
isolate and examine some of the most significant dimensions of accessibility that need to be
addressed if we are to ensure persons with disabilities are able to exercise their right to
health.
Starting from the most basic elements, the structure of this section roughly mirrors the
experience of persons with disabilities in the healthcare system, including:
(a). Awareness and training,
A systemic problem with accessibility for persons with disability is inadequate awareness and
training of health care professionals at various levels. The recognition of the right to health
means that there should be trained medical staff at health care centres for persons with
disabilities, yet there is a huge lack of medical staff that is trained or even sensitized to the
needs of persons with disabilities. The schemes introduced by the government must make
provision for efforts to train and educate doctors and medical staff so as to bring about a
positive change in the quality of medical services offered to the people. These schemes must
also work towards creating a sense of co-operation among different governmental and nongovernmental organizations, while actively encouraging their participation in taking up
measures to address the health care needs of persons with disability.
a. Haemophilia: This lack of awareness and training is not specific to any one disability,
however taking a few particular disabilities as examples serves to illustrate the point. With
the case of Haemophilia, for example, there is such a lack of awareness that even doctors are
not aware of its symptoms and causes. Haemophilia is an invisible disability, i.e., there are
no visible signs of a disability and therefore it is difficult to get certification of any kind.
Physiotherapy for haemophilia is essential but very little knowledge of the same is available.
b. Thalassemia: Thalassemia is another condition, which has been grossly overlooked due to
lack of awareness. Statistics reflect that one in thirteen people have thalassemia dominant

33

or passive.26 The mortality rate is high because of lack of awareness and knowledge. If proper
care is provided, then it is possible to live over 40 years with thalassemia. The Cochin Zonal
Report recommended, for instance, that thalassemia be classified as a disability so that
individuals can get certificates and pension and insurance benefits. The report also
recommended genetic screening and counseling for thalassemia.
c. Muscular Dystrophy: Lack of awareness and sensitization is also a problem for persons
with muscular dystrophy. Muscular dystrophy is progressive in nature and is caused by a
genetic mutation. With genetic counseling, families can be made aware of how to help a
person with muscular dystrophy, yet medical staff are not often recognize muscular dystrophy
as such and lack the awareness to deal with it appropriately.
There is an urgent need for caregivers, counselors, family members and health care
professionals to be sensitive towards the needs of persons with disabilities. One way to help
solve this problem would be to better organize and regulate the care giving profession itself,
for instance by recognizing certain rights for caregivers and attendants by regulating or
unionizing their employment. Also, training institutes could operate at a micro level with
certification at several levels, with healthcare professionals training caregivers on how to
cater to the needs and comforts of persons with disability.
Healthcare professionals lack awareness about disabilities and usually, during check-ups, the
doctors blame the health issue on the disabilities. There is a need to introduce a course on
disability related issues such as rehabilitation and special healthcare needs of persons with
disabilities in the MBBS curriculum.
(b). Medical classification,
Related to the problems of awareness and sensitization are the gaps in proper classification of
disabilities and this is a problem even with medical professionals.
a. Autism: Autism for instance, is not traditionally covered by the MBBS curriculum as a
disorder and legislation such as the PWD Act, which does not include autism means that a
child having autism would not get a disability certificate or would get a disability certificate
stating that he or she has mental retardation or mental illness. This is highly problematic as
mental retardation and mental illness and autism are entirely different categories of
disabilities.
26 About, Thalaseemia, http://www.thalassemia.org.
34

b. Deaf-blindness: Even in cases of patients with deaf-blindness, multiple disabilities, and the
hearing impaired, misclassification is a problem. Most states do not accept deaf-blindness as
a separate category of disability and medical boards do not issue certificates mentioning
deaf-blindness. These kinds of misclassifications and knowledge gaps can have tragic
consequences. For instance, a common misunderstanding is that a person who is born with a
hearing impairment will always have a speech impairment. Due to this ignorance, most
children are not treated correctly for their form of disability and not even taught to speak.
There are also communication gaps, especially with young girls around the age of puberty,
where they are unable to communicate their uneasiness, which leads to behavioural issues
and eventually a misdiagnosis.
The problem with classification will be inherent if we are to have a medical model of
disability wherein only restricted forms of disability are covered under the law. In the PWD
Act only seven forms of disability are covered and a person with disability is one who has
40% or more of any of the seven disabilities. A more progressive approach would be to take
the guidance of the UNCRPD, which defines persons with disabilities as including 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.27 This legal approach, if continued, will result in better facilities
at hospitals and healthcare centres, thereby improving the institutional responsiveness to
persons with disability.
(c). Early intervention,
One of biggest issues of access to health care for persons with disabilities lies in the failure of
the healthcare system to anticipate health problems for persons with disabilities, and to
provide early intervention. The PWD Act emphasizes early intervention measures and
Section 25 of Chapter IV of the PWD Act deals with the prevention and early detection of
disabilities. According to Section 25, government and local authorities must take measures to
reduce the incidence of disabilities and their related health concerns by:
a. Undertaking surveys, conducting investigations and researching the underlying cause and
origins of disabilities,
b. The promotion of different preventive methods,
27 UN Convention on the Rights of Persons with Disabilities, Article 1, UNCRPD (2006).
35

c. The process of screening all children at least once a year, for the purpose of identifying atrisk cases,
d. Imparting training to staff at primary health centres,
e. Sponsor and promote awareness campaigns that spread information about general
hygiene, health and sanitation,
f. Measures that contribute towards better pre-natal, post-natal care of both mother and
child,
g. Educating the general public through the work of pre-schools, schools, primary health
centres, village level workers and aanganwadi workers, and
h. Spreading awareness amongst the general public through television, radio and other mass
media on the causes of disabilities and their preventive measures.
There are several early intervention schemes that have been introduced by the Central
Government, namely: the National Program for the Control of Blindness, National Program
for the Prevention and Control of Deafness, National Leprosy Eradication Program, Pulse
Polio Immunization Program, Integrated Child Development Schemes, National Health
policy and Child Survival and the Safe Motherhood program. A good example of an effective
government scheme would be the Bal Arogya Abhiyan, which is focused on early detection
and screening. Under this scheme, the government screens all children up to the age of 18 in
all schools for any kind of disability.
Although at the state level there are a few projects for prevention, early identification,
intervention and rehabilitation of disability and its complications, it has largely been ignored
in primary health care services by the State. Consequently, early identification of disability is
not a priority for health care providers. The effective implementation of these sorts of
initiatives requires a comprehensive strategy for expanding public health care centers and
involving communities and organizations in disability prevention and rehabilitation.
According to the data collected by the organization Childline, around one third of most
disabilities in children are preventable.28 Research shows that children are most responsive to
treatment up to six years of age. Thus early identification and intervention can yield
28 The Essentials of Child Protection, Publications,
http://www.childlineindia.org.in/publications.htm, last seen on 1/11/2015
36

significant and positive outcomes in qualitatively improving the lives of children with
disabilities.29 The Cochin Consultation echoed the need for early intervention and
recommends notification of a legal provision to force parents to send children for early
intervention, since there is none currently in the Juvenile Justice Act or elsewhere.
In rural areas, intervention is highly delayed because of the lack of trained professionals in
primary healthcare centres or district hospitals. The Delhi Consultation identified a particular
lack of paediatricians and specialists in rural areas. For many who are living in poverty, it
boils down to the question of loss of daily wage versus right to health of the child. Even to
take a child for regular intervention sessions would mean a loss in a days worth of earnings.
A cursory examination of some particular disabilities further demonstrates the need for more
effective early intervention. Regarding multiple sclerosis, for example, the data in India
reflects a relatively small number of cases, the reason for which could be either because it is
less diagnosed or less known, and therefore it is often misdiagnosed. The nature of multiple
sclerosis is such that it affects various parts of the brain, which in turn affect several parts of
the body. The various symptoms can take a long time for recognition but multiple sclerosis
can be diagnosed through an MRI scan of the brain. For this reason, the focus of healthcare
for persons with multiple sclerosis should be on early diagnosis, rather than later stage
symptom treatment. Early intervention is not just a requirement for children, but for adults
and elderly as well. The Indian ethos encourages the idea that old age is a time for illness and
health problems to set in, therefore inadequate attention is given to these problems. The
elderly form a different social group for purposes of the mainstream healthcare system. They
largely suffer from difficulty in mobility, partial or complete blindness, partial deafness,
difficulty in moving joints, etc. Some of the major problems such as Alzheimers require full
time medical and require well-trained caregivers and attendants, who are able to understand
the needs and problems of elderly people with disabilities. This opinion is shared by doctors,
parents and caretakers too who often feel that early intervention, diagnosis and treatment are
very influential, including for elderly persons. The Government has initiated and proposed
several schemes for early detection at the Central, State and District Levels in order to reduce
the incidence of disability and its allied health concerns among people from all parts of India.
Many schemes and programmes issued by the Government already focus on practices of
early screening and preventive care. While some of these schemes are meant for all persons,

29 Ibid
37

there are others specially introduced to benefit persons with disabilities. How effectively
these schemes are being implemented however, is questionable.
(d). Physical access,
One of the biggest hurdles in equal access to health care for persons with disability is
physical access to health centres. Article 9 of the UNCRPD states that state action must be
taken with regard to ensuring that persons with disability have equal access to physical
environment, to transportation, to information and communications, including information
and communications technologies and systems, and to other facilities and services open or
provided to the public, both in urban and in rural areas. This ties in with Article 19 and 20 of
the UNCRPD which emphasises the right to an inclusive, yet independent life accompanied
by the right to personal mobility which may be furthered through access facilitated by
external aids and appliances. Articles 44, 45 and 46 of the PWD Act, strongly emphasise the
need for non-discrimination in the areas of transportation, roadways and buildings the
measures to be undertaken by the Government must include accessible toilets, engraved zebra
crossings, railway platforms and pavements for better wheelchair use; the use of Braille
symbols and auditory signals in elevators; and ramps in hospitals, primary health care centres
and other medical care and rehabilitation institutions. Additionally, the Delhi Consultation
Report recommended the use of Braille on medicine bottles so that the visually impaired may
be able to take their prescriptions on their own.
However physical accessibility in health care centres and hospitals is not being implemented
in the country. UNCRPD INDIA had released a baseline report on accessibility in February,
2009 which was meant to highlight access problems.30 Noticeable, however is the complete
lack of data relevant to health care or health care facilities and physical access. There is
however a Draft Report on Indian Accessibility Standards (Recommendations for Buildings
and Facilities for Inclusion of Persons with Disability) submitted by members of
Accessibility, which is currently under review.31 It is obvious from a look at the existing data,
that there is a dearth of any guidelines or regulations for ensuring physical access of persons
with disability in public places. This includes accessibility and removal of architectural
barriers in hospitals and health care facilities.
30 Baseline Report, UNCRPD India, http://uncrpdindia.org/files/reports/Baseline-ReportAccessibility.pdf, last seen 1/11/2015.
31 Ibid.
38

The issue of accessibility of medical institutions is a serious one. In a study done, it was
found that not a single medical institution in India was completely accessible for persons with
disabilities due to physical barriers in libraries, lecture halls, and hospital campuses. 32The
Medical Council of India has now issued directions to the Deans/Principals of all the medical
colleges/institutions in India to submit compliance reports on access facilities for persons
with disabilities.33

Thus, clearly the experience of persons with disabilities show that

physical accessibility in health care centres and hospitals is a huge issue that needs to be
addressed if we are to ensure that the right to health of persons with disabilities is guaranteed.
a. The need for interpreters: Another big issue for access is the requirement of interpreters in
hospitals and health care facilities. Most respondents to the questionnaires stated that they go
to their health care facilities accompanied by their own interpreter. Only some stated that the
hospitals or health care centres provided interpreters. The issue of sign language interpreters
is a concern as there are not sufficient interpreters available and no effort is being made by
hospitals to ensure that they have sign language interpreters available with them for persons
with hearing impairment. This issue was raised in the case of The National Association for
the Deaf vs. Union of India and Others 34 filed by the National Association for the Deaf
before the Delhi High Court on the non- availability of sign language interpreters in public
services. The petition complained of the lack of availability of adequate number of sign
language interpreters in various public places including hospitals and sought for directions
against the Ministry of Social Justice and Empowerment and other authorities to ensure
access and better training of sign language interpreters. The Court noted the lack of
availability of sign language interpreters, it agreed with the Petitioner Association that due to
non-availability of interpreters, the hearing impaired were unable to avail medical, transport
and banking facilities and to also seek police help. The Court relied on the CRPD and held:
The United Nations Convention on the Rights of Persons with Disabilities adopted by the
General Assembly and ratified by the Govt. of India on 1st October, 2007 also provides for
taking appropriate measures to provide forms of live assistance and intermediaries including
32 Ibid.
33 Gaurav Vivek Bhatnagar, MCI asks all medical institutions to be accessible , The Hindu
(18/04/2013), available at http://www.thehindu.com/todays-paper/tp-national/tp-newdelhi/mci-asksall-medical-institutions-to-be- accessible/article4628862.ece, last seen on 10/07/2014.
34 177(2011) DLT707.
39

guides, readers and professional Sign Language Interpreters to facilitate accessibility to

buildings and other facilities open to the public. Needless to state that all the said rights are
composite part of life enshrined in Article 21 of the Constitution of India.35
Based on this, the Court issued specific directions to the respondent authorities, which
included undertaking a survey to assess the availability and requirements for sign language
interpreters, appointing nodal officers to seek information from concerned authorities and
prepare

report

to

be

used

for

creation

of

new

posts,

creating

courses and curricula for training of interpreters. It remains to be seen now whether the
number of sign language interpreters appointed by public hospitals and health care centres
would increase and if such employment is mandated. From the discussions at the zonal
consultations, it would seem that despite the Courts orders, most hospitals lack sign language
interpreters. The issue of interpreters in hospitals was also examined in the celebrated
Canadian case of Elridge v. British Columbia,36 in which the Canadian Supreme Court held
that the failure to provide interpreters amounted to discrimination, as it was not merely an
issue of internal hospital administration, but rather a question of how government policy was
being affected. The Court called this adverse effects discrimination in that the need for sign
language interpreters must not be looked at from the perspective of those persons not living
with disabilities, but as a pre-requisite for persons living with disabilities, in their pursuit to
access and benefit from what is being termed as a comprehensive medical service. The
reasoning of the court in the Elridge case carries forth a resounding need to re-consider the
manner in which we choose to devise accessible health care services for persons with
disabilities. Hospitals in India are quite inaccessible to persons with visual impairment. There
are no directions given in Braille and the infrastructure is not disabled-friendly. A person with
disability cannot go to the hospital alone and always needs an accompaniment. In case of
visually impaired persons, medicine bottles, and tablet strips do not come with Braille
instructions and in order to consume medicine, a person with visual impairment always
requires the assistance of others. Hence, as discussed earlier, it is necessary that Hospitals and
Government offices have sign language interpreters as it is an important means of
communication for persons with speech and hearing impairment.

35 Supra 30.
36 [1997] 2 S.C.R. 624.
40

b. Accessible Transport Services: If there is no transport that is accessible for persons with
disabilities, then even being able to travel to a health centre for a health checkup or medical
treatment would be impossible. Having accessible hospitals and health care centres would be
meaningless if there was no accessible transport for persons with disabilities to get there.
Equal access to transportation is not simply a right in itself, but a means to the enjoyment of
other total rights.37 Many respondents stated in the questionnaires that there should be
accessible transport facilities in order for them to access health care. In some cases the health
care schemes provide concessions only at certain hospitals, which are located far away
without accessible transport, due to which those schemes cannot be utilised. Most often the
primary health centres are not well-equipped with medical facilities so one is required to
travel to the district hospitals for basic treatment. Due to the difficulty in travelling long
distances to the district hospitals, many persons with disabilities are unable to receive
treatment at the proper time. Transport facilities for persons with disabilities have to be
factored into health care schemes and there needs to be policy which requires hospitals to
provide transport facilities to patients who have disabilities.
(e). Financial access,
A big hurdle to accessing adequate health care, aids, and corrective surgeries for persons with
disabilities is the financial barrier. The National Policy on Disability interestingly refers to
several programs for financial assistance for persons with disabilities in the field of
employment but none for access to health care.38
a. Government Schemes: While there are several kinds of government schemes that are
available for providing financial assistance for medical care, purchase of aids and appliances
and for surgeries, they are woefully inadequate. Participants in the study stated that
government health care schemes provided insufficient financial assistance for medical
treatment and health care. One respondent remarked that the assistance provided to him for
his treatment by the Government was Rs. 75,000/- when the actual cost of his treatment was
more than Rs. 10,00,000/-. Many respondents were not at all aware of these schemes,
indicating that these schemes need to be advertised a lot and awareness of these schemes is
37 Sharon Rennert, All Aboard: Accessible Public Transportation for Disabled Persons, New York
University Law Review 63 (1988).
38 Government Initiatives for Redressal of Disability in India, MOSPI, available at
http://mospi.nic.in/Mospi_New/upload/disablity_india_statistical_data_11mar2011/Chapter
%208%20- National%20redressal.pdf, last seen on 1/11/2015.
41

required. Many respondents also stated that procedures for applying for these schemes were
too lengthy and complicated.
b. Aids and appliances provided are not suitable: There are more schemes for purchasing aids
and appliances and not sufficient schemes for financial assistance in health care, medical
treatment and corrective surgeries. One respondent stated that he uses an ordinary wheelchair
as the specialized one is unaffordable. Wheelchairs that are being given out under various
schemes by the State and Central Governments do not fit in most of the houses that the
beneficiaries live in and therefore the wheelchairs are left outside to rust.
c. Health Insurance: Almost all respondents stated that it was difficult to obtain health
insurance as persons with disabilities. Ideally disabled people should be able to access the
government and private insurance schemes easily as they require it more than others. But the
reality is that many people with disabilities are being denied insurance on the grounds of
disability. People with Cerebral Palsy and other severe disabilities are either denied medical
insurance or being asked to pay a high premium by private insurance companies. If people
have some kind of a mental disability, then obtaining insurance is almost impossible,
especially for disabilities such as schizophrenia. The Niramaya insurance scheme was
primarily initiated by the National Trust because of this reason and this has been reported to
be by far the most used insurance scheme. 39 This is a Health Insurance Scheme for the
welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities.
The scheme envisages to deliver comprehensive cover which will have an insurance cover up
to Rs.1,00,000/- (Rupees One Lakh only) and that there would be no exclusion for any preexisting condition. The Treatment can be taken from any hospital from anywhere. The entire
scheme may be implemented & monitored by the National Trust through registered
organisation with the active participation of the Local Level Committees.
(f). Discrimination,
Thus far, we have largely framed the question of access in terms of the need for equality and
gaps in equality. Closely linked, however, is the question of discrimination, and how certain
groups are actively or systematically prevented from exercising their right to health. Are
persons with disability being provided access to health care equally as other citizens who are
not disabled? Are there violations of their rights to dignity and privacy?
39 Nirmaya Scheme, The National Trust, available at
http://www.thenationaltrust.co.in/nt/images/stories/Niramaya_updates/niramaya%20-%20scheme.pdf,
last seen on 1/11/2015.
42

The analysis of the questionnaires shows that this discrimination is indeed a large problem.
The treatment of persons with disabilities at almost all healthcare centres, both public and
private has been found to be extremely unequal and discriminatory.
a. Women with Disabilities: With regard to special services for women with disabilities,
especially reproductive health, the availability of health care has been almost non-existent.
This discrimination on the part of medical staff stems from a lack of adequate training as
evinced from the answers of doctors and healthcare practitioners to our questionnaire. This
absence of exposure to persons with disability (especially psychosocial disabilities) coupled
with a lack of training leads to insensitivity while treating the patient.

Women with

disabilities responded that they did not get information or assistance about their health issues
especially about fertility and reproductive health concerns. Indeed, the Cochin Zone
consultation found an overall lack of attention in disabilities policies for issues such as
gender, age, and urban/rural environments. The lack of informed consent is especially an
issue of concern for women with disabilities. Firstly, the doctors and healthcare professionals
do not provide them with adequate information. Secondly, the woman is usually not allowed
to make the decision. Often women with disabilities are considered to be asexual and the
concept of a family seems alien. The decision to undergo a particular treatment is taken either
by the husband, the father or other caregivers and members of the family. Abortion is
imposed on women often without their consent, notwithstanding the decision of the Supreme
Court in Suchita Srivastava v. Chandigarh Administration.40 The Cochin Zone Report cites
mass hysterectomies, which have been performed on women in mental health institutions.
b. Children: Hospitals often did not have facilities for children with disabilities. Respondents
stated that hospitals did not have any facilities to keep children engaged such as toys, reading
material or playing rooms and thus getting medical treatment for children with disabilities
when they were made to wait in hospitals for the entire day because extremely difficult.
c. Consent: One of the most common ways which persons with disabilities are discriminated
against is through a disrespect for their consent. Treating the person with disability as a
subject with emotion requires the element of consent for all procedures. However, as some of
our care givers answered in the questionnaire, doctors very often do not ask for consent while
adopting a very patronizing, paternalistic approach towards persons with disabilities. Consent
becomes a bigger issue when it comes to persons with psychosocial disabilities, where the
40 Supra 20.
43

problem is compounded because a common understanding amongst medical practitioners is

that a person with psychosocial disability does not have the capacity to take decisions. One
caregiver responded stating that doctors in the private hospital which she attends, often take
video clips of her son with psychosocial disability, which is then aired in conferences sans
any form of consent. Clinical trials are another issue faced by patients. Though informed
consent is mandatory for clinical trials, in most cases healthcare professionals conducting
clinical trials do not provide detailed information on the effect of the trials. There is an
unequal bargaining power between the doctors and patients and thus, patients are made to be
a part of clinical trials because of their desperate situation. In such cases, the right to health is
completely violated. Indeed, the Mumbai Consultation recognized the lack of respect for
informed consent and for incorporating persons with disabilities into decision- making, and
recommends that the Medical Council of India and doctors in general be brought under the
strict purview of the anti-discrimination and equal rights provisions of the PWD Act.
d. The right to privacy and dignity: Most respondents felt that their rights to privacy and
dignity were not protected during the process of medical examinations. Persons with
disabilities are routinely examined in the presence of other patients. For instance, one
respondent stated that he was required to produce a picture of his legs without his trousers in
order get a wheel chair. He was also not examined in private. Another patient reported that he
was asked to disrobe in the presence of a female nurse. One respondent with multiple
sclerosis stated that nurses and support staff at hospitals do not respect the patients privacy,
and that they enter the rooms and patient quarters without prior permission, and sometimes
violate the patients privacy by barging in on them for instance, when they are urinating.
Sexual needs and privacy arising therein of persons with disabilities is often overlooked. The
predominant presumption is that persons with disabilities are asexual beings. This makes
them susceptible to violent sexual harassment and violation, even rape, as their autonomy
over their bodies is seen as non-existent. Sexual autonomy is rarely conferred upon persons
with disability, particularly mental disability, and reproductive choices are seen as outside the
purview of their mental abilities. All these situations show that the rights to privacy and
dignity of persons with disabilities are not even recognised. In the context of healthcare, these
rights become all the more important as disabled persons are at the hands of doctors and
medical staff, and are not in a position to object the treatment that they may be subjected to.
e. Persons with psychosocial disabilities: There are four main reasons for a more detailed
discussion on the right to health for persons with psychosocial disabilities:
44

1. There is additional and intense discrimination faced by persons with psychosocial

disabilities, institutional lacunae that make it inept at responding sensitively to their needs;
2. The pervasive incidents of cruel and degrading treatment meted out by health
professionals;
3. The lack of free and informed consent prior to performing procedure on persons with
mental disabilities;
4. Discrimination faced by persons with psychosocial disabilities at the hands of medical
institutions is far more wide-spread and intense than other disabilities. This is because of the
deeply entrenched prejudice against mental disabilities.
The World Health Organization identified eight reasons why persons with mental and
psychosocial disabilities form a vulnerable group. Some of these reasons are high levels of
physical and sexual abuse, lack of access to emergency healthcare services, systemic
marginalization in education and employment, higher mortality rates and high levels of
stigma and discrimination stemming from common misconceptions about the causes and
nature of the mental health conditions.41 The shocking consequences of this discrimination
came to light in the Erwadi tragedy that witnessed the death of 40 mentally ill inmates during
to a fire because they were chained to their beds. This form of discrimination has pernicious
consequences in the quest for access to health for persons with psychosocial disabilities.
Misconceptions abound as to the nature of the problem, leading many to enlist the services of
quacks who perpetuate the prejudice and exacerbate the health problems of the individuals.
There is a need to remove stigmatisation and discrimination, as they are significant barriers to
accessing health services. Informed consent is also not consistently secured on contentious
issues like ECT and sterilisation, The Mental Health Care Bill 2013 proposes a completely
new system of the Mental Health Review Commission, with administrative and adjudicatory
functions. These institutions will lay down certain minimum standards and serve to monitor
the compliance of the standards by medical institutions. The glaring lacuna of the Bill,
however, lies in the fact that it reflects the health needs only of persons with psychosocial
disabilities- an approach that is being actively opposed by civil society groups and disability
rights advocates. As argued earlier, a comprehensive health care bill including a right to
health care for all persons with disabilities would be a better approach.
41 Disabilities, World Health Organisation, available at
http://www.who.int/disabilities/world_report/2011/en/, last seen on 1/11/2015.
45

Finally, concrete steps need to be taken to do away with the practice of institutionalization of
persons with psychosocial disabilities. Instead, robust community welfare programmes will
create a much more salubrious environment for the persons with psychosocial disability to
live in.
(g). Rehabilitation.
Further, consent is seldom obtained from either the patient or the caregiver for procedures
performed. Practices such as Electro-Convulsive Therapy and sterilization are conducted on
patients without any information given about the nature and consequences of the therapy. The
2013 Bill takes this into account by including the protection of the rights of persons with
mental illness. Neither the MHA nor the PWD Act has such a strong rights focus as the Bill
which includes the right to access mental healthcare, supported accommodation, community
based rehabilitation, right to information and confidentiality and access to medical records
among others. Therefore, the need for the 2013 Bill to be passed is immediate and urgent in
the Indian context.
Barriers to the right to access healthcare are most tangibly felt by persons with psychosocial
disabilities. This is because of the pervasive discrimination and prejudice that exists in
society against persons with mental illness. This bias is a result of widespread misinformation
about mental health problem which is itself a result of the marginalization and social
exclusion felt by these persons. It has also been shown by scholars that persons with
psychosocial disabilities experience poorer health than the rest of the disabled community.
According to several zone reports, these issues can be compounded for children and
adolescents with psychosocial disabilities since there is lack of sensitization and family
support services for psychosocial disabilities among these categories of people.
Further, even if the individual manages to avail himself or herself of healthcare in a medical
institution, un livable conditions encourage the spread of infectious diseases (tuberculosis,
HIV/AIDS, hepatitis), skin infections and respiratory and intestinal disorders, thereby leaving
the patient in a worse condition that earlier. These deplorable conditions have also resulted in
fatalities in the mental health institutions. Therefore, this is a manifestation of a formal right
to access healthcare i.e. on paper but in practice, we are far from it.
An inclusive right to access healthcare on an equitable basis without discrimination therefore
required to be recognized and implemented. Constituents of an inclusive and meaningful
right to healthcare include access to potable water, food, shelter and access to health-related
46

information. Finally, required provisions need to be made to facilitate informed consent for
contentious issues such as ECT or sterilization. Therefore, an inclusive right to access
healthcare includes within its ambit not just the existence of institutions of medical health,
but the extension of the concept of reasonable accommodation to include persons with
disability.
CHAPTER 4
CONCLUSION AND RECOMMENDATIONS
There is a long way to go for making the right to health for persons with disabilities a reality.
Article 25 of the UNCRPD is not yet being implemented in any meaningful way in India. In
order to make the right to health a reality, it needs to be internalised by the government and
the health sector and recognised as a right to be provided equally to all persons with
disabilities. Some of the recommendations for making this right a reality would be the
following:
a. A Comprehensive law needed: The enactment of a comprehensive law relating to the rights
of persons with disabilities, which would cover the right to health care that is accessible and
non-discriminatory and which is in conformity with Article 25 of the UNCRPD is needed,
because presently the PWD Act has no mention of the right to health at all. The Rights of
Persons with Disabilities Bill, 2014 is currently pending before the Parliament and this
contains various provisions relating to equal access to health care and also covers the special
needs of women, children and older persons with disabilities.

b. Rehabilitation: Providing

rehabilitation services that cater to all categories of persons with disabilities is imperative.
The halfway homes, day care and other current programs under the Rehabilitation Council of
India Act are not sufficient to reinstate people into employment after they have taken a break
due to any psycho-social disability. There need to be bridging programs to help rehabilitate
people and to introduce support systems beyond basic rehabilitation.
c. Providing improved health care to persons with mental disabilities: The health care needs
of persons with psychosocial disabilities are often always ignored. There is a shortage of
doctors and health care professionals trained to deal with psychosocial disabilities, which
greatly affects access. Even when health care is available, the stigma attached to psychosocial
disabilities creates barriers in access to health care and support. Issues of privacy and consent
become crucial for adequate health care to be provided. Towards this goal, to some extent the

47

Mental Health Care Bill, 2013 is a way forward, but many of its provisions are highly
controversial.
d. Schemes for health care to provide adequate financial assistance and not merely token
assistance. Procedures in availing of schemes to be easy and less cumbersome.
e. Providing accessible transport services for persons with disabilities and implementation of
the PWD Act.
f. Certain disability-specific recommendations:
A. Autism: It is strongly recommended that there be diagnosis facilities in district hospitals
for diagnosing and detecting autism.
B. Thalassemia: Blood transfusion facilities in each hospital with recovery rooms. Such
facilities should be made available in all district hospitals.
C. Haemophilia: RH factor to be made available free of cost, and provision of screening of
blood and factors for transfusion at all district hospitals / PHC levels
D. Downs Syndrome: As suggested in the Kolkata Consultation, for mothers above 40 or
below 20 years of age, it should be made mandatory to be tested to detect Downs Syndrome.
In Canada, for example, mandatory tests for Downs Syndrome are conducted 6 weeks into
the pregnancy. There is no such mandatory requirement in India.
g. Projects such as the Gubbara Project by the Latika Roy Foundation, in Dehradun where
they are present in District and Civil hospitals is a model worth implementing, and this could
be linked to the Rashtriya Swasthya Bima Yojana programme of the Ministry of Labour and
Employment.
h. Usable Aids and Appliances: Research and development should be better used to ensure
that wheelchairs, as well as other aids and appliances, are actually usable. There ought to be
more government-funded schemes which would substantially subsidise the purchase of aids
and appliances, and surgeries, and not just do lip service.
i. Budgetary Allocations: In order to make the right to healthcare for persons with disabilities
achievable, it is important to increase the allocation of resources for health care in the budget.
The Planning Commission of India, in the 12th 5 year plan, adopts an inclusive definition of
health as not merely an absence of disease but instead as a state of complete physical,

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mental and social wellbeing.42 Thus, in order to provide complete health coverage which
would address the physical, mental and social well-being of all persons with disabilities, the
budgetary allocations have to increase substantially and have to be spent on health care and
related measures.

42
Twelth
Five
Year
Plan,
Planning
Commission,
available
http://planningcommission.gov.in/plans/planrel/12thplan/welcome.html, last seen on 1/11/2015.

at

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