Consensus Paper

Consensus Paper on Substantive Content of New Law on Disability Rights

Prepared by Centre for Disability Studies NALSAR University of Law Hyderabad, INDIA

Contents

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Consensus Paper on Substantive Content of New Law

Explanatory Note

This consensus paper is primarily a prose record of the decisions taken under each segment of the proposed Act by the concerned sub-group after deliberating with the legal consultant. The deliberations were held on the strength of the base paper developed by the sub-group after dialoguing amongst themselves and with other stakeholders and the agenda prepared by the legal consultant.

This paper:

  • Presents the structure and substantive content of each chapter of the Act.
  • Flags those issues on which no consensus was reached and which the sub-group desired should be discussed in the big Committee.
  • Records those questions on which further research was desired by the sub-group.

The paper is being presented in order to seek approval from the full committee on the decisions reached by the sub-group whether with or without modifications/additions or deletions. The decisions reached by the Committee will be the basis of formulating the Working Draft of the Act.

By way of abundant caution it is restated that this paper is only a prose record of what the new law could include. It is not the text of the New Law. In order to obtain the context of the deliberations and decisions, it needs to be read along with the base documents and agendas of the sub group meetings.

Whilst considering the recommendations of the sub-group the Committee may also need to consider the suggestions made by civil society participants. The oral submissions made during the 29th Sep to 1st Oct meeting have been incorporated in the minutes of that meeting.

Statement of Objects and Reasons

A statement of Objects and Reasons is included in the Bill by which an enactment is introduced in Parliament. The importance of this statement in legal parlance is that whenever any dispute arises as regards to the correct meaning of any text in a legislation, the statement objects and reasons is often consulted by courts in order to arrive at the meaning intended by the legislature. Keeping this information in view the sub-group decided that the Statement of Object and Reasons of the new law would include the following:

  • Record the reasons for the enactment of the statute
  • These reasons would amongst others be as follows:
    • The ratification of the CRPD and the need to enact a disability rights law which was in harmony with it.
    • This would especially require a legislation which was in consonance with the social model of disability; recognized the full legal capacity; civil and political rights; and social economic and cultural rights of all persons with disabilities;
    • To formulate a disability law which learns from the experience of implementing the Persons with Disabilities (Equal Opportunity Protection of Rights and Full Participation) Act of 1995 and continues to build upon the progressive jurisprudence developed by the Indian Courts in furtherance of the rights of persons with disabilities.

Preamble

The Preamble is a part of the statute but like the objects and reasons it has no binding force. Courts of Law examine the preamble only when there is any ambiguity or dispute in the text of the statute. A preamble can record the reason why a particular statute is being enacted or it can capture the spirit with which a law is being formulated. Thus, for example, the preamble to the New Law could narrate how the making of this law has become necessary subsequent to India ratifying the UNCRPD; it could also articulate the hopes, aspirations and vision of persons with disabilities.

After consultation the sub group on Preamble and definitions decided that whilst mention of the UNCRPD shall be made in order to explain why the union was making a Disability Rights Law, a substantial part of the preamble shall be evocative in content. The evocative part of the Preamble should highlight that disability is an evolving concept which could not be exhaustively and permanently defined. The preamble shall also recount how disability was an integral part of human diversity and why the contributions of persons with disabilities needed to be duly recognized by the Indian polity. The role of the Preamble would be to create another image of PD rather than the existing stereotypical image. This positive rhetoric would assist in educating judges and administrators when they encounter disability related cases for the first time. The preamble could thus become an important instrument of awareness raising. It was decided that the Preamble should be crafted by drawing upon the principles formulated by the civil political rights group and human rights instruments. Such an evocative preamble was considered necessary to set the tone for a rights based statute insofar as it would guide both the State and the civil society on how disability rights needed to be understood, interpreted and implemented.

Title of the New Act

There was some discussion around the question of whether the new law should have a new title or retain the old one. It was suggested that retaining the old title could be one more method of saving the progressive jurisprudence of the 1995 Act. However no decision was taken on the matter and the issue was referred to the full Committee for its opinion.

Part I: Introductory

Definitions

Whilst discussing the definitions part of the statute, it was acknowledged that an exhaustive formulation of the definitions clause of the New Act could not be done till the entire statute has been finalized. This is because the definitions section is the dictionary of the Act and whether a word needs defining or not can only be decided after the words that are to be used in the statute have been finalized. Consequently, the sub group decided to limit its attention to those terms which they were certain would necessarily be used in the New Law. It was also decided that those terms which were being defined because they exist in the current Disability Act shall be defined only if those authorities, entities or concepts were retained in the New Law.

Utilizing the CRPD Definitions

The sub group decided that the definition of communication; language; discrimination on the basis of disability and universal design should be the same as in the UNCRPD. In relation to reasonable accommodation it was decided after much deliberation that a gender component shall also be introduced into the definition used in the CRPD. It was also suggested by some members that an explicit mention of age should also be inducted into the definition, however no final decision was taken on this suggestion and it was agreed that further research would be undertaken by the sub group in order to justify a mention of age related accommodation.

As a result of all the above mentioned decisions, the sub group largely devoted its attention to the definition of disability; person with disability; establishment and barrier. Since the question of defining disability was closely connected with the issue of certification, this sub group also deliberated upon the nature of the certifying authority and the manner in which certification needed to be undertaken.

Disability

The UNCRPD does not define disability and the preamble to the Convention explicitly states that disability is an evolving concept. The CRPD also expresses a specific preference for the social model of disability. Even as the Convention does not define disability, it incorporates a definition of a person with disability in the purpose article of the Convention. This definition of person with disability points out that a person with disability is one who has physical, mental, intellectual or sensory impairments which in interaction with various barriers hinders their full and effective participation in society.

The sub group wished to address the discrimination experienced by all persons with disabilities. At the same time, it wanted to ensure that the entitlements extended to persons with disabilities were availed of by those who most needed them. Whilst a generic definition drawing upon the social model could address the question of discrimination, it would be overly inclusive for purposes of entitlements. An enumerative definition of disability with a severity component built into it could to some extent answer the second concern of the sub group, however if this was done then the subgroup perforce had to endorse the medical model of disability. After a lot of deliberation it was ultimately decided to go for two definitions of persons with disabilities, one, which was generic and the other, which was enumerative.

The generic definition would be used to address the non-discrimination mandate of the statute; whilst the enumerative definition would be used for the entitlement segments of the New Law. It was further decided that only those impairments would be enumerated in the New Law for which explicit entitlements were provided in the statute. Any condition for which no entitlements were provided will not be named in the enumerative definition. However the enumerative definition would have a residuary clause which would allow for other impairments to be included if required without going in for a statutory amendment.

No final decision was taken on the placement of these two definitions, even as various options were discussed. Thus, for example, both definitions could be in the definition clause with the generic one being applicable to the entire law except for the entitlement provisions and the enumerative one could be made expressly applicable to the entitlement provisions. Other options are to place the generic definition in the definition clause and the enumerative definition in the specific chapter guaranteeing the entitlements. The sub group decided that various alternatives shall be explored and that option which best advanced the two purposes of non-discrimination and entitlement protection shall be used. The Legal Consultant was mandated to provide these various alternatives in the working draft.

Even as the sub group decided to opt for both the generic and enumerative definition, it had to further decide as to how the disabilities enumerated in the enumerative definition had to be defined. Should the statute only utilize a medical definition as is the present practice or should a socio-medical definition be incorporated? Whilst a strong preference was expressed for adopting a socio-medical definition, it was realized that there were no tools or measurement instruments which allowed for the immediate implementation of the socio-medical model. It was therefore decided that the New Law shall provide for immediate research to be undertaken taken to develop appropriate socio-medical tools which shall become the basis of certifying persons with disabilities for the purpose of entitlements after these instruments have been duly tested and authenticated. In the transition period the existing method of certification would continue with this modification that once a 'disability certificate' had been issued by a duly constituted authority, it shall be recognized by all authorities in all parts of the country. On the question of the necessity of a certificate for those who were not seeking any entitlements under the Act but required protection from discrimination, it was decided that identity procedures employed for the general population such as the UID should be used.

Additional Decisions required from Full Committee

  • Other than according its approval to the sub-groups suggestions on the dual definition, the Committee would need to consider whether the enumeration made in the Act would be the same for all entitlements or should they vary according to the nature of the entitlement?
  • The Committee may also wish to consider if they would wish to enhance the menu of entitlements in order to address the specific concerns of particular groups.

Definition of Barrier

Since the sub group opted for the social model of disability, a much deliberated question was whether the definition clause should include a definition of "barrier". No final decision was taken on this question and it was decided that the matter may be deliberated again in the full Committee.

Establishment and Other Authority

The UNCRPD has placed a number of obligations on private entities especially in relation to Accessibility. Section 41 of the Persons with Disabilities Act, 1995 asked for appropriate Governments and local authorities to provide incentives to employers both in the public and private sector to ensure that at least 5% of their work force is composed of person with disabilities. With increased liberalization and privatization it was felt that both in relation to job reservations and accessibility obligations, it would be desirable to mandate rather than only incentivize the duties of the private sector towards persons with disabilities. To that end, the sub group proposed a definition of establishment which included the private sector. Upon further discussions with the Legal Consultant it was realized that the jurisprudence surrounding establishment could make such a definition constitutionally questionable. It was therefore suggested that the case law under Article 12 of the Constitution on how other authority has been defined to bring in private players shall be duly researched to explore if that is a constitutionally more sound view of holding the large private players accountable.

Subsequent research has shown that the Committee may be better advised combine the article 12 jurisprudence with the definitions relating to establishment in labour legislations. In this manner without unduly affecting the small businesses the Committee may be hold the private player accountable. An updated report of this on going research shall be presented to the Committee in the 19th-20th Oct meeting in order to enable the Committee to decide upon the most suitable way of holding the private player accountable.

Extent of the Law

The sub group recommended that instead of the routinely excluding Jammu & Kashmir, keeping in view the real need of this law for persons with disabilities in that State this provision be so drafted that it specifies the condition on the fulfillment of which the law would apply to J&K. Thus this section should provide that this law would apply to the whole of India; however its application to the State of J&K shall be specified by the President only after the government of J&K gives its concurrence on the application of this law to that State.

Coming into Force

There are various legislative techniques by which a statute is brought into force after it has been passed by both houses of Parliament and signed by the President.

  • One method is where the statute comes into force as soon as it is signed but this is a rare technique primarily because most statutes require some ground level preparation before they can become operational law.
  • The other technique which is very common is to confer the power of enforcement on the Central Government which then decides when is it in a state of readiness to bring the Act into force. The difficulty with this technique is that it places the matter entirely within the discretion of the Government and no remedy is available against undue delay. There are several instances where a duly enacted statute was never brought into force.
  • A third method is where the legislature itself settles the time within which a statute shall come into force. The advantage of this technique is that whilst it gives the government time to make arrangements on the ground, it does not leave the choice of the legislation becoming operational law on the government.
  • After deliberation the sub group was of the opinion that it would prefer to take the last option in relation to bringing the New Law into force.

Part II: Lowering the Barriers

1. Awareness Raising

  • Awareness raising responsibilities accompanying the realization of every right
  • The generic ones will be included in this chapter
  • The particular ones will stay in the particular chapter for example there is some awareness raising work which needs to happen to realize the right to health which is best taken care of by the health establishment then it will be provided for in the chapter on the right to health. However the stereotypes on disability which may also impact on the health care rights of persons with disabilities will be provided in the awareness raising chapter. Illustratively the following awareness raising programs could be in the particular right or in the awareness raising chapter:

Home and Family

  • Create awareness to respect the decisions made by people with disability on all matters related to family life, relationships, founding a family and raising children

Right to live independently and in the community

  • Basic approach of society to be one of inclusion of everyone, including values of tolerance, respect for diversity, empathy.

Decisions required from the Committee

  • The Committee would need to consider whether this method of addressing the awareness raising obligations was appropriate?
  • Sub-groups would need to examine the awareness raising provisions formulated by them and advise the legal consultant on which of the obligations would they wish to place in the generic chapter and which obligations, if any, would they want to include in the particular chapter.

2. Accessibility

The following narration is to be read along with the chapter on Accessibility as it does not repeat the content of the chapter but only pinpoints on those questions which need to be addressed whilst incorporating this chapter in the law.

II.2 Foundational Significance of Accessibility

  • Text which acknowledges the cross cutting influence of accessibility
  • How none of the other Rights hold meaning without accessibility
  • Consequently Accessibility foundational to disability rights

[The general principles formulated by the sub group would be drawn upon along with the jurisprudence formulated by the Indian Supreme Court on fundamental rights to formulate this section of the chapter]

  • Since all accessibility needs would not be fulfilled at once necessary to bring in a prioritization
  • As a result of this discussion the sub-group has put in place a three phase plan on accessibility. The choice before the Committee on prioritization
  • To induct plan into the law with a procedure in place for modification
  • Accept the principle of prioritization and put in place a procedure by which access plans shall be formulated.

The Committee may wish to consider the suggestion of simultaneous but phased implementation which came from civil society.

Application of Accessibility Norms

  • International principles for ensuring physical, infrastructural, virtual and transportation accessibility to be customized to Indian requirements.
  • Chapter from sub-group makes a detailed and nearly exhaustive listing of infrastructure; transport; goods; services; information and communication technology; mobility and communication aids which are covered
    • some advantages and some disadvantages of enumeration
  • Since advantages outweigh disadvantages we would advise a residuary section to take care of the problems of disadvantages
  • Standards Not Confined to Physical Accessibility alone but would also address the accessibility requirements of persons with psychosocial; intellectual and developmental disabilities;
  • Question whether this should be named and included or just seamlessly included in the accessibility standards
  • A liberal definition of public so as to include the private player however allowances to small businesses and establishments

Research Development and Monitoring

  • Establishment of National Institute of Universal Design
  • Various options of setting it up to be discussed in Full Committee
  • To set it up through executive order
  • By separate statute
  • As a registered society
  • In this statute
  • Functions to be performed by the Institute
  • Whether only a research and development institution?
  • Or also to function as a Monitoring Body?
  • Ensuring Compliance and Penalties for Non Compliance
  • Fine or Imprisonment did not deliver the goods
  • Need for Alternative liabilities and sanctions
  • Normative suggestions such as no completion certificate without obtaining an accessibility certificate.
  • Adverse remarks; stoppage of electricity or withdrawal of recognition
  • Question for the Committee
  • How should this be incorporated in the law?
  • One option is to provide for it in the law but leave the enforcement on the regulatory authority
  • Second option is to legislate on the circumstances in which the sanction will become applicable
  • First option is more flexible than the second and is based on trusting the judgment of the enforcement authority
  • Second is a command -control where oversight is being retained on both the duty bearer and the enforcing authority.

II Human Resource Development

Creation of Service, Cadre, Posts

  • The necessity of personnel from grass root to tertiary level
  • Possibilities of setting up a National Disability Service in the legislation explored
  • Constitutionally this can only be done after a resolution to that effect is passed by the Rajya Sabha
  • In the interim the rehabilitation sub-group shall advise of positions which can created in this law to address the issue of personnel.

At the civil society consultation a number of questions were raised around the role of the Rehabilitation Council of India (RCI) in human resource development. Whilst one opinion was that the RCI was only an accreditation body; others felt that the RCI could make a contribution to HRD provided the resources at its disposal were enhanced and its functions enhanced. Consequent to the meeting the role of RCI vis a vis human resource development as also its relationship with the Disability Rights Authority is being researched and the till then findings of this research will be presented at the 19th-20th meeting.

Disability Rights Training

  • The necessity of disability rights training at all levels
  • Duty to this effect will be incorporated in the new law in line with an analogous provision which exists in the Domestic Violence Act.
  • What the Committee would need to consider post the civil society meeting is the extent of detail the members wish to provide on the content of this training. Whilst details of the training should ordinarily be left to the persons undertaking the training, it is possible to pen down the mandatory minimum content in the statute.

Further questions on training

In what follows we have put together some of the capacity building suggestions which have come from members in relation to some of the civil -political rights which shall be included in the new Act. We have put these down here just to sharpen the point in relation to capacity building. Whilst capacity building for socio-economic rights is more established and known; this is a relatively unchartered area. The importance of continuous training of existing personnel may be especially significant for this area. The committee may need to consider whether the Act should mandate this training more explicitly?

Right to Life

  • Capacity building programs for Families and care providers on care giving / giving support (e.g. Aadi's 4 principles program focuses on dignity, having control over own decisions, purpose of life, and social network).
  • Trainings on right to life, liberty and living, and caring must be provided to doctors as well as part of their sensitisation.

Right to Privacy

  • All courses, including professional courses, must include trainings on aspects of respect for privacy, dignity, personal integrity.
  • PWD should be provided with information and learning so that they know what choices to make on privacy.

Freedom of Speech and Expression

  • People's creativity is a way of communication. Care givers, and supported networks must attend to creative expression with equal seriousness. The Act must facilitate good 'reception' and listening skills of care givers.

Access to Justice

  • There was a discussion on improving the caring capabilities of the judicial system, which is a highly cognitive system. Emotional intelligence of this system to be addressed, by finding sensitive judges and influencing them to instil sensitivities. Capacity building of the judiciary is a must.
  • Block level legal service authority must be sensitised to human rights of all peoples including people with disabilities.
  • Quasi judicial systems and authorities (e.g. family court, Tribunals, Commissionerates, higher level people in civil service, etc.) must be trained as well on disability sensitivities.
  • Lok Adalats, Gram Nyalaya, Juvenile Courts and ADRs must be sensitized.
  • Prison and police authorities must be trained in disabilities.
  • Capacity building with different cadres on disability should aim to develop empathy, listening skills and other qualities of relating with society and with PWDs and not just be on basic information.
  • Right of Access to justice for PWDs must be included into all legal trainings, curriculum at LLM level, trainings of judges in training, all cadres of the judiciary including advocates.

Right to Live Independently and in the Community

  • Independence trainings for care givers and for PDs, so that community relationships are built on mutual contribution and respect

Equality and Non-discrimination

This right would be amongst the overarching pillars of the new Act. There was consensus in the sub-groups on the necessity of this provision. The legal consultant has been asked to find appropriate legal language to induct the following principles into the law. It was also decided that the Committee should recommend a constitutional amendment to include disability amongst the prohibited grounds of discrimination.

The following principles shall find inclusion in the legal provisions relating to Equality and Non Discrimination

  • Explicit prohibition of discrimination on the basis of disability
  • Right to a Equal and Effective Protection against discrimination on all grounds
  • Right to reasonable Accommodation
  • All measures necessary to accelerate or achieve de facto equality would not be considered discrimination
  • Recognition of multiple discrimination especially discrimination on grounds of gender would be in furtherance of the right to equality.

The matter is also under research and the till date progress of research will be presented in the 19th-20th Oct meeting to the Committee.

Part III: Authorities

The Persons with Disabilities Act, 1995 establishes a Central and State Co-ordination Committees along with Executive Committees both at the Central and State level. The 1995 Act also provides for a Central and State Commissioner for Disabilities. The sub group on Authorities in its early meetings evaluated the existing authorities in order to assess the extent to which these authorities could be utilized to fulfill the functions under the New Act. Whilst the body of the opinion in the sub group felt that the CCPD and SCPD could with some up gradation perform the jobs envisaged in the New Law, there were several others who expressed strong reservations against this opinion.

The matter was examined afresh in the meeting between the sub-group and the Legal Consultant wherein it was underscored that the purpose of the New Law and the various outcomes expected from the legislation the purpose to be fulfilled by the statute would be critical to determine the kind of authority or authorities which could best perform this function.

In line with the purpose clause of the UNCRPD it was agreed that the overarching purpose of the Act was to promote, protect and ensure the full rights of persons with disabilities on an equal basis with others. This promotion, protection and guaranteeing would need to be done in relation to all rights guaranteed in the Act such as the rights of education, employment, social security, or accessibility. The Act would need to both provide for non-discrimination and economic empowerment of persons with disabilities. It was also recognized that there was need to establish suitable professional services and support systems for the realization of the rights recognized in the UNCRPD and the new Act.

After extensive discussion on the strengths and weaknesses of the existing authorities, it was decided that whilst the existing authorities had the strength of being accessible to persons with disabilities, they could not perform the multifarious tasks required to be performed in the new Act. Consequently the new law should establish a National Authority to raise awareness and undertake sensitization; evolve policy, assist co-ordination and monitor implementation; and undertake regulatory responsibilities. The first level adjudication of grievances could continue to remain with the CCPD and SCPD with adequate infrastructure and financial support. However if redress could not be obtained with the intervention of the SCPD/CCPD then other procedures of redress would need to be built into the Act. The composition of the Authority and its functioning must give representation to the voice of persons with disabilities.

The Authority was thus visualized as a hybrid between a commission; a council and a regulatory body. It was suggested that the design of the United Kingdom Equal Opportunity Commission and the Canadian Disability Rights Commission could be examined in order to assess its suitability for the establishment of the Disability Rights Authority under the Act. Since the discussion on Appropriate Authority had necessarily to happen after the substantive content of the rights guaranteed under the statute was settled, the Legal Consultant was asked to explore various options and present the same to the Full Committee. On the strength of the mandate given by the sub group, we are presenting the following Disability Rights Authority as work in progress.

  • Central and State Commissioners of Disability as full fledged quasi-judicial authorities whose orders are binding.
  • Certifying boards all over the country
  • National Institute of Universal Design- research and development entity whose work will feed into the regulatory authority [ Detailed in the Accessibility Chapter]
  • Education Commission- Transitory Body which imagines curricular reform from the standpoint of persons with disabilities. [Elaborated upon in the Education Chapter]

After the civil society consultations on 29th Sep to 1st Oct the following further questions have arisen:

  1. Should the Committee include a Disability Rights Tribunal in this law?
  2. Will the Authority have a State and/or District tier? If not will it not be too distant from the lives of persons with disabilities?
  3. How does the proposed Disability Rights Authority interact with other Authorities existing in other statutes relating to disability rights such as the National Trust as well as the Rehabilitation Council of India. The National Trust also has its network of local level committees on the ground. So the question before the Committee would be:
    • Should these existing authorities be merged into the proposed Disability Rights Authority?
    • Should they be inducted into the new law as additional Authorities along with the proposed Disability Rights Authority?
    • Or should a mechanism of cooperation and co-ordination be built into the new law?

The strengths and weaknesses of each of these approaches is being presently researched and the till then reached findings shall be presented in 19th -20th Oct meeting to the Committee.

Part IV: Equal Recognition before the Law and Civil Social and Political Participation

This part of the new law would elaborate on the legal capacity of persons with disabilities. The question of legal capacity has relevance for all rights included in the new law but especially critical to civil-political rights. This is because whilst provision for social-economic rights has often been made without the participation of stakeholders (both persons with disability and non disabled persons), civil political rights have been the domain of the particular individual and hence denial of legal capacity means a certain denial of civil-political rights.

Equal Recognition before the Law

The legal capacity sub-group diagrammatically presented the overarching significance of the recognition of legal capacity to all other rights recognized in the new law. Keeping this presentation in view the legal consultants offered the choice of three kinds of models to the sub-group, which could be constructed to recognize legal capacity in the new law.

  • Minimalist which recognizes legal capacity
  • Proactive where processes and programs are built into the law by which the deprivation is dismantled and if required support is constructed.
  • Hybrid Model which is all of the above but the proportion of the proactive component is lower than provided in the Pro-active model.

The advice to the sub-group was to go for the third model and if required to adopt a twin-track of the second. In order to enable the Committee to decide whether this twin-track will be within the statute or outside it, a research team in the legal consultant's office is working further on the strengths and weaknesses of each approach. This enquiry is especially required because of some of the questions which were raised in the 29th Sep to 1st Oct meeting.

At the moment, on the basis of the research already undertaken, it can be said that the minimalist model is an absolute necessity in the law; this is because without recognizing the legal capacity of persons with disabilities the legal guaranteeing of other rights holds no meaning. The pro-active model of legal capacity is especially suitable for those persons with disabilities who have been for long denied legal capacity and are still in a state of deprivation whether because they are living in institutions or because they are subsisting under systems of plenary guardianship. For these persons with disabilities just recognition of legal capacity in the law may not be enough to result in their exercising legal capacity in fact; and more pro-active measures of establishing support may be required. For the vast majority of persons with disabilities recognition of legal capacity along with an authority which provides redress when capacity is denied may be sufficient. This authority could be pro-active in dismantling structural barriers but reactive in assisting individual difficulties. This means that for the structural barriers the authority would not await a complaint to initiate redress but for individual complaints the aggrieved individual will need to approach the authority. The third model is very similar to the model under which the non disabled function. For non disabled persons also, the second model is only utilized for those persons with disabilities who are economically, socially or educationally disadvantaged. The rest are presumed to be able to assert their rights. If the second model is made the predominant model then the problem is that all persons with disabilities would be seen to require support to exercise their legal capacity. The new law may thus inadvertently provide space to the very paternalism from which it is seeking to rescue persons with disabilities.

The sub-group decided that it would wish to defer consideration of the matter till the nature of the Authorities established in the Act was settled. The nature of the queries surrounding Authorities have already been outlined above. The Committee would need to take a decision on the manner in which legal capacity should be inducted in the new law in tandem with determining which and what kind of Authorities will be inducted in the new law.

Civil- Political Rights

This part of the law is the absolutely new segment of the proposed legislation. It is also important to note that whilst civil-political rights are recognized in Constitutions, legislations are primarily used to evolve procedures by which these rights can be deprived. Insofar as the new disability law is recognizing the civil-political rights of persons with disabilities in the new law, it is undertaking an unprecedented exercise. The unprecedented nature of the exercise is further enhanced by the fact that the proposed chapter shall not just prohibit appropriate governments from depriving the rights of persons with disabilities; but will also obligate them to launch appropriate programs to promote the realization of these rights.

The nature of these positive programs has been detailed out by the CPR sub-group. Since as a rule the legal recognition of civil-political rights is limited to either prohibiting its deprivation (for example the absolute prohibition of torture) or to prescribe a procedure by which these rights can be denied (for example the elaborate provisions which subsist in legislations on how an arrest has to be undertaken). In order to strengthen the justification for the induction of these positive obligations in the law the sub-group members shall provide empirical data on the necessity of the positive obligations by consulting with civil society or otherwise. The legal consultant's team has also been researching the existing jurisprudence on these rights to see how these can be analogically extended to persons with disabilities. The till date progress of this research will be presented to the Committee on the 19th -20th Oct meeting.

The work undertaken by the sub-group was originally disaggregated under the heads of changes required in policy; new law; other laws; programs mandatory; programs optional; work to done on awareness raising, accessibility and capacity building. This document is available at http://www.disabilitystudiesnalsar.org/Minutes_CPR.php. For this paper we have only reproduced the provisions relating to what is required in the law, in other laws and in mandatory programs. The suggestions relating to awareness raising; capacity building and accessibility will be addressed in that part of the law and have been illustratively referred to in those segments of this paper.

Also the rights of life liberty and access to justice have been further disaggregated in some detail to demonstrate how the aspirations expressed by the sub-group will be converted into law.

Right to Life

Provisions in New Law

  • Every human being has the inherent right to life and should be provided with all needs and supports so that he / she is able to live and have a good quality of life.
  • Basic needs are not only physical and material needs, but also basic human intellectual (knowledge) and emotional needs. Quashing PDs' emotional life, dreams, desires and aspirations should also be treated as neglect of basic psychosocial and interdependence needs. [The first two bullet points will be reworked relying on the Article 21 jurisprudence created by the Indian Supreme Court to formulate the right to life for persons with disabilities in the new law ]
  • The new Act should criminalise the actions that amount to exclusion and neglect of basic needs and inappropriate societal practices by person or persons / family members / organisational / institutional managers (private and public) leading to aggravating the disability, diminishment of quality of life or to death. The new Act should impose penalties on the abetment of deeds leading to barriers being created for PDs. [A connection would be forged between this aspiration and the penalties and offences chapter of the New Law]
  • The new Act must provide for all basic aspects of sustaining life and quality of life, on equal basis with others, such as food and balanced nutrition, clean water, fuel, housing, environmental health & hygiene, livelihood and social security. [ This bullet point and all the sub points will be used to make the positive obligation under the new law]
    1. All spaces offering services of any sort for persons with disabilities including residential care, health care, rehabilitation services, allied peripheral health, legal and other services must be conducive to enhance the quality of life of PDs on equal basis with others. Inclusivity should be a principle here, not 'special'. Such spaces must clearly provide information on the rights of PWDs who it is serving.
    2. The services must study and develop its own value base and 'good practices' in order to standardize the delivery of care.
    3. Continuing assessments of services, PD partnership in service evaluation, etc. must be encouraged by the Act.
    4. The Act must create some funds for the standardisation of ground level service delivery practices, their value base, delivery mechanisms, good practices and effectiveness.
  • The New Act should pronounce on the right to life of people living in institutions, and those PDs who are homeless or abandoned by family members. [will be incorporated in the new law as positive obligation on appropriate governments for vulnerable groups]

Changes in Other Laws

MTP Act - The subgroup discussed whether the right of the mother or right of the foetus should be protected. While making the new Act, the PNDT Act and the MTP need to be referred to. We are referring to these for protecting the rights of the person with disability. MTP should not be done on the basis of disability. Appropriate changes in MTP and PNDT should be brought about. Information to pregnant women, to adolescent girls, nutritional programs, etc. [This issue was discussed as one of the slippery slopes of the right to life. The sub-group did not take a position one way or the other but noted the fact that the IDC in the Ad Hoc Committee discussing the right to life just stressed on the value of a disabled life and skirted clear of this issue as it did not want the rights of persons with disabilities to be caught in the cross-fire between pro-life and pro-choice groups]

Programs (Mandatory)

Imaginative programs can be considered: Personalized care giver at home; volunteer base for home visits; people with empathetic listening skills; group living programs; peer support and networks; etc.

Situations of Risk and Humanitarian Emergencies

The following points formulated by the CPR sub-group shall be utilized to formulate the entitlements of persons with disabilities in the new law

Provisions for new law

  • Persons with disabilities, including women and children with disabilities, have to be identified as a group by all agencies concerned with situations of risk and humanitarian emergencies.
  • Rights of persons with disabilities will need to be recognized and ensured in risk prevention and mitigation as well as disaster preparedness, relief and reconstruction programs and policies.
  • Specific evacuation methodology for PD during fire or earthquakes (lifts not possible), floods etc. to be developed - mock drills to be conducted for the same in public places / care centres for PD for both regularly deployed rescue personnel as well as citizens.
  • Procedures need to be developed to consult local organizations of persons with disabilities, and of parents of children with disabilities, together with NGOs working in the field of disability, by all concerned agencies. People with disability must be involved in planning and execution of services at times of risk and emergencies People with disability must also be involved in teaching and training courses for risk and emergency situations.
  • So the National Disaster Agency and other concerned organizations will be required to review all its policies and procedures to ensure that persons with disabilities rights are addressed in interventions in situations of risk and humanitarian emergencies, within a period of one year after the law comes into force.
  • Medical doctors must not collude with the state or other forces or contribute to depriving emergency care to sections of people. This will tantamount to neglect, and if combined with narcoanalysis, and other such barbaric methods of truth telling, to torture.
  • Guidelines need to include provisions for identification of persons with disabilities in a population for registration to ensure support is provided where needed. Specific support must be ensured for people with disability who are home-bound.

Changes in Other Laws

  • So the National Disaster Agency and other concerned organizations will be required to review all its policies and procedures to ensure that persons with disabilities rights are addressed in interventions in situations of risk and humanitarian emergencies, within a period of one year after the law comes into force.

Programs (Mandatory)

  • Counselling services, psychotherapies, trauma reduction programs are a must in emergency situations. Cadres of people must be trained in targeted trauma reduction techniques, such as somatic healing. Guidelines must be provided so that people are not re -traumatised through services given.

Right to Liberty

Provisions for New Law

  • The UNCRPD is unambiguous on the claim that deprivation of liberty cannot happen on the basis of disability.[ This bullet point will translate into the prohibition which will be incorporated in the law]
  • The law should dismantle barriers, but should allow for the making of policies and programs which facilitate right to life in community settings. [ From this point the positive obligations reposed on appropriate governments will be constructed]

Programs (Mandatory)

[The following examples of mandatory programs will be coupled with the second bullet point to further detail the positive obligations of the appropriate government]

  • To experience wellness, a non-violent (violence free) environment is a precondition. Programs to promote values of peace, love and non-violence in schools must be encouraged by the law. (e.g the No Plastic Bag, No Tobacco, campaigns have had much success in schools.)
  • The law must encourage programs that promote such values and practices in neighbourhoods, service programs, families, social groups as well as in public life in general.
  • As conflict is a justice issue, suitable judicial and parajudicial programs must be enabled which will provide for arbitrations and negotiations during situations of family conflict (Police are not the best persons to be doing this.)

Access to Justice

Provisions for New Law

[The following bullet points put together by the sub-group will be used to firstly give a right to PD to access the legal system whether as complainant and witness. It will also elaborate on the rights of persons with PDs when brought before the legal system as wrongdoers. Next the rights of PDs to legal aid; communication support; reasonable accommodation and accessibility will be spelt out]

  • Justice system is the key holder of CPR and LC for PWDs. The Act must provide for intersections with judiciary.
  • All laws must presume / recognize / respect the full legal capacity of all people including PWDs.
  • Access includes [1] Access to take action against a wrong doer and [2] Access to the judicial system.
  • PWDs testimonial (e.g. blind people's and deaf people's testimonies) must be accepted in courts as evidence.
  • Right of Access to Justice will be realized by accessibility of communication at all levels, right from police level, to the level of Supreme Court. Accessible formats and language: AAC, interpreters, Braille, sign and tactile language, personal assistance, or any other mode of communication.
  • Recognition of legal capacity, reasonable accommodations and supported decision making should be in place while accessing justice.
  • Accessible judicial systems must be available at the block level

Changes in other laws

[This segment is just aimed to underscore the fact that for the full realization of the rights of persons with disabilities it would be essential that provisions linking the general law with the disability law are made. These provisions in the general law would guide general administrators to the Disability Rights Law and ensure that PD's rights are not compromised].

PWDs testimonial (e.g. blind people's and deaf people's testimonies) must be accepted in courts as evidence.

  • Institutions such as NALSA (National Legal Services Authority) would need to examine the National Legal Services Authorities Act, and refurbish the system and services on principles of inclusion and access to justice for PWD, made to comply with UNCRPD. Legal courts linked with LSAA should be looked at and strengthened.
  • Various commissions can be activated on disabilities; HR commissions, women's commissions, minority, child rights, SC, ST, backward.

Right to Integrity

Provisions for New Law

[The standard interpretation of integrity in other human rights acts and jurisprudence will be used to convert the following text into the legal text which will both prohibit actions which undermine the right and require actions which protect and promote it]

  • Right to integrity is about personal identity. The 'RIGHT TO BE YOU' and the barriers to that. Right to affirm oneself as a whole person in a physical and mental sense.
  • Articles (12, 17) will be read together.
  • The new Act must ensure the safety of occupying one's own personal space. Good touch / bad touch, illustratively, it is significant for people in wheel chairs or those being led. Every PWD would have experience of lacking safety in one's personal environment.
  • Right to integrity is linked with right to privacy, liberty, freedom of expression, right to be protected from violence, abuse and exploitation.
  • Within the context of medical services, right to integrity is linked to right to liberty, right to consent, right to choice, and right to services in the natural settings, and right to be protected from abuse and violence, and right to protection from inhuman, degrading and torturous treatments.
  • Right to integrity includes both bodily and mental integrity (e.g. domestic violence Act recognizes the latter.)
  • Right to integrity must be equally assured in case of people who are homeless and within institutions, both private and public.

Right to be protected against violence abuse and exploitation

[The manner in which abuse and exploitation have been defined in other legislations such as Domestic Violence Act, the Sexual Harassment Guidelines formulated by the Indian Supreme Court, SC & ST Atrocities Act, etc. shall be studied in order to determine how this section of the new law will be formulated. In formulating this provision care will be taken to ensure that the detailing of the atrocities do not once again victimize persons with disabilities]

Provisions for New Law

  • The new Act must consider that medical environments can be abusive and exploitative. Medical ethics references must be made to prevent the use of inhuman, degrading and torturous practices. There must be active dialogue with MOHFW to take up this aspect of best practices seriously.
  • Some focus on the higher risks of women, children (both boys and girls), elderly who are especially vulnerable to abuse.

Changes in other laws

[Once again the need for a resonance provision in mainstream legislations addressing the concerns of persons with disabilities was expressed and the following two legislations were especially mentioned]

Domestic Violence Act

Sexual Offences Bill

Programs (Mandatory)

[This segment concentrated on the positive obligations that would need to be woven into the Act]

  • There is absolutely no cover for the disabled street child and women with disabilities who are homeless. Creating support systems (soup kitchens, night shelters, spaces for personal hygiene in their natural environment is a must.)
  • Benefits for the child with disability could be covered by the PWDA.

Right to Privacy

[The manner in which the right to privacy has been recognized in Indian legislations and case law shall be drawn upon to convert the following aspirations into law. The jurisprudence developed by other countries will also be consulted]

Provisions for New Law

  • Privacy and having a boundary is central to anyone's experience of personhood. Not having an assurance of privacy leads to loss of dignity, shaming, and disrespect.
  • Reasonable accommodation and necessary support must factor in personalized needs for privacy. The balance between disclosure and privacy is a matter to be decided by PWD if necessary with support group, including family.
  • Protection of privacy in personal hygiene and self care within the home environment is a must.
  • Privacy needs must be addressed by balancing need for being alone, and need for being supported. Neglect on the one hand must be balanced by overprotection on the other hand.
  • Sexual identity and needs of PWDs also brings up issues of privacy (e.g. case study of woman with disability put into a room with lots of male cousins).
  • Media, courts, printed and electronic channels, movies, medical and other kinds of health services must assure privacy. Use of private information in media, courts and medical services must be regulated. (Case study of woman with mental illness whose privacy was invaded for weeks by a local newspaper in Maharashtra.)
  • Medical services must assure privacy in routine delivery of health and mental health care. Often only families are consulted, not PWD.
  • Privacy in situations of medical emergencies must be assured.
  • Ministry website having names and other details of PWDs must be edited out.
  • There must be a mechanism that should look at whether reasonable accommodation is being monitored. (The sub-group needs to clarify what is meant by this bullet point?)

Freedom of Speech expression and Information

Provisions for New Law

[The definition of communication in the definitions clause will have special significance for this right. The existing Indian jurisprudence on the right to freedom of speech and expression as also the contemporary importance accorded to the right to information will be drawn upon to convert the following bullet points into legal text. Once again the legal text would prohibit discrimination on grounds of disability as well as require performance of positive obligations]

  • The concept of 'communication' must be looked at more broadly, as helping people connect with each other in a meaningful and empathetic way. (The Committee may wish to examine whether they wish to alter the definition of communication in order to incorporate this aspiration of the sub-group)
  • Communication should be across domains, cultures, linguistic backgrounds, individualised forms of expression, non verbal communication, metaphorical communication, etc.
  • Freedom of expression creates an atmosphere of support and care for the larger community. It helps in creating tolerant, adaptive and caring cultures. It creates safe emotional environments.
  • The PWD should have the freedom to express oneself in any way they choose to.
  • All modes and forms of expression of PWDs to be accepted / recognized.
  • The views and opinions of PWDs expressed should be accepted and not be judged or criticised. Validation and affirmation of what PWDs express, and the right to be listened to, should be provided for.
  • Language as a system of communication is based on cognitive ability. Social and Emotional communication (e.g. receiving or giving a hug) is also to be developed to foster interdependence.
  • Personal assistance and supports to be provided for expressing oneself.
  • Freedom of expression must be established in medical contexts, without it being considered as a further symptom of disability.

Programs (Mandatory)

  • We must be enabled to talk about the right to "emotionally safe" environments and the access to that. What would be 'emotionally safe communication', which will break barriers between people to connect? Programs on assertive communication, creative communication, non violent communication, holding dialogues and trialogues, etc. can be fostered by the Act.

Right to Live Independently and in the Community

[This right has primarily been visualized in programmatic terms. The Committee may wish to examine the interplay between this right and the laws permitting institutionalization of persons with disabilities]

Provisions for New Law

  • People with disability have a right to choose their place of residence and not be obliged to live in a particular living arrangement.
  • A National Institute of assisted and independent living shall be established under the New Act which will be guide by the basic principles of the New Act and the vision of Assisted And supported living as envisaged by people with disability themselves [ This suggestion has not been discussed. It will need to be considered by the Committee whilst deliberating on the effectiveness of the Disability Rights Authority ]

Programs (Mandatory)

  • Support services to enable people with disability to live in their natural surroundings must be made available and it also must be ensured that these services are available at a low cost to people with disability in difficult circumstances.
  • State shall provide dignified living options to people with disability who are homeless, abandoned and with multiple vulnerabilities. These options will be community based and shall ensure quality services.
  • Community mechanisms for inclusion must be laid out, including peer support systems, local healing services, community networks, centres for making first contact, multipurpose workers who can provide first level counselling and immediately needed services at a single point, etc.

Right to Home and Family

[In converting the following bullet points into legal text the slippery slope of personal law will have to be climbed insofar as a number of the disqualifications on marriage as also disability being a ground for divorce have been incorporated in personal laws which apply to specific religious groups.

The provision prohibiting sterilization can be more easily incorporated in the legislation as there is no legal permission for the same and the one case which reached the Mumbai High Court resulted in the court prohibiting the sterilization]

Provisions for New Law

  • Ensure that people with disability have the right to marriage, family, parenthood, and relationships on an equal basis with others.
  • Ensure non discriminatory procedures for people with disability to raise children of biological origin or adopt children according to their choice. It must also ensure support measures and necessary assistance to raise children.
  • Ensure people with disability retain their fertility
  • Ensure the right of children with disability to live with their families, and not be separated from their parents or families

Changes in other Laws

  • Ensure that people with disability have the right to marriage, family, parenthood, and relationships on an equal basis with others.
  • Ensure non discriminatory procedures for people with disability to raise children of biological origin or adopt children according to their choice. It must also ensure support measures and necessary assistance to raise children.

Programs (Mandatory)

  • Ensure awareness, training and services to provide education in family planning on an equal basis with other members in the community

Liberty of Movement

[Whilst the first bullet point is about the obligations which can be placed and assumed by the appropriate governments ; the second can only be ensured by further international law interventions be it General Comments of the Treaty Body or contracts between States. The Committee can thus only urge the Government to take those further steps].

Provisions for New Law

  • Ensure that there are universal designs and accessible processes for issuing of identity cards, voter ID cards, Bank pass books and ATM cards, Credit Cards, Pan Numbers, Drivers License, Passport, ration cards, BPL cards, medical and health insurance cards, to people with disability on an equal basis with all other citizens. Disability should not be a ground for denial of visa/passport or any other such document that proves ones nationality or residence within the nation.
  • Ensure that People with disability have the right to acquire or change nationality on an equal basis with others and would not be deprived of the right on the basis of disability.

Right to Exercise franchise, Stand for Election and hold Public Office

[Since this right has primarily been recognized or denied in other laws, whilst the recognition of this right may happen in this law, its realization will be ensured only by introducing requisite amendments in the other laws which regulate the political rights, be it changing the rules of residence to give voting rights to persons with disabilities in institutions or modifying the rules for exercising postal ballots to give participation rights to house bound persons with disabilities].

Provisions for New Law

  • Recognize persons with disability as equal participants in political life-as voters, leaders, reformers at all levels (From Panchayat to parliament)
  • The topic of home bound PDs to be seriously addressed in the new Act. There must be a way of registering home bound PDs and their family members and some public mechanism of tracking their survival and well being.
  • Address the topic of institutionalised PDs seriously. They are farthest away from democratic process. There must be a way of registering them, and a public mechanism of tracking their survival and well being.

Changes in Other Laws

  • Recognize persons with disability as equal participants in political life-as voters, leaders, reformers at all levels ( From Panchayat to parliament)
  • The topic of home bound PDs to be seriously addressed in the new Act. There must be a way of registering home bound PDs and their family members and some public mechanism of tracking their survival and well being.
  • Address the topic of institutionalised PDs seriously. They are farthest away from democratic process. There must be a way of registering them, and a public mechanism of tracking their survival and well being.
  • Provide for reservation of a certain percentage of PDs in political spheres at all levels.... including in local governance (as in the precedent of SC/ST seats, women in each election)
  • Dismantle laws excluding PDs on basis of disability from contracting, voting, employment, marriage

Part V: Capability Development

In this segment the sub-groups deliberations on socio-economic rights have been recorded. In relation to education; employment and social security this document informs what the broad substantive structure of the chapters in the new law would look like and especially zeroes in on issues on which the full Committee needs to deliberate.

In converting the base documents into the proposed chapter the sub-group was alert to the need to include within the legislations those principles which need to have the force of law. Those suggestions which require flexibility of operation have been segregated as the policy recommendations of the Committee.

The sub-group has also not included in the chapter those detailed suggestions which should be incorporated in the rules and regulations but should not find place in the legislation. The reason for doing so is that very often these details need to be in accordance with local conditions hence it is not appropriate to mention them in a uniform central legislation. The other reason is that often these details need to be changed frequently. Since rules and regulations are easier to amend than legislations it is considered more appropriate to induct these matters of detail in rules and regulations.

This segment primarily addresses those rights which are traditionally categorized as socio-economic rights. Programmatic interventions are the way in which these rights are generally realized. Programmatic interventions are by their nature flexible whereas rights are concepts of non negotiability; in order to ensure that the law does not dilute the non-negotiability of the rights the sub-group has opted for the devise of mandatory programs to address these entitlements. The strategy of mandatory programs has also been used to ensure the positive component of civil political rights.

Education

The sub-group on education has settled the following broad format for the chapter on education.

The first part of this chapter shall outline the significance of the right to education. In order to underscore the importance of education in the life of persons with disabilities, the legal text shall draw upon the principles stated in Art 24(1) of CRPD supplemented with the jurisprudence developed by the Indian Supreme Court. The text shall be so formulated that it brings out the point that only if an educational intervention achieves for the person with disability the outcome specified in article 24 (1) of the CRPD can the educational intervention be considered as a fulfillment of the right to education.

The chapter shall next lay down that persons with disabilities must be guaranteed the right to education on an equal basis with others without being discriminated on the ground of disability.

The sub-group next requires that there is governance and values parity between the education chapter and the RTEA. This strategy has been proposed by the sub-group to ensure that irrespective of which way the amendment to the RTEA goes persons with disabilities are not short changed. Also whatever aspects of education are addressed by the new law there is no compromise on the issue of standards; quality; participative functioning.

The group also decided that the non ambitious nature of the amendments in the RTEA needed to be questioned and at a very minimum the CRPD definition of discrimination on the ground of disability and reasonable accommodation needs to find place in the RTEA.

The sub-group was in agreement on the need for equality of opportunity in Higher education and how affirmative action measures such as reservations and scholarships and assistive devices needed to continue. In the wake of the decision on definitions the Committee would need to consider whether link between entitlements and enumeration of disabilities needed to be made in this chapter? If yes then which disabilities other than ones identified for reservation in employment should find mention?

The sub-group may also wish to examine the various suggestions which have come from civil society in the 29th Sep-1st Oct and make their recommendations for the consideration of the full Committee.

(Those suggestions have been outlined in the Minutes of that meeting).

This suggestion of the sub-group has primarily come from the insight that most discussions around the education rights of persons with disability were informed by the deficit perspective towards disability. Persons with disabilities were not seen as integral members of the humanity who bring their own perspective to knowledge creation, dissemination etc. As a result of that discussion the suggestion for establishing an Education Reform Commission was made. In order to stress upon the immediacy of the task and to employ the terms of reference of this Commission to influence the existing approach on the Education Rights of Persons with Disabilities, the sub-group decided to both set up the Commission in the existing law and to specify its broad terms of reference.

In execution of the sub-groups mandate the following first research effort is being presented for the consideration of the Committee:

Education Reform Commission

  1. Terms of Reference
    1. To takes into account the lived experience of persons with disabilities, by developing a system from the standpoint of persons with disabilities and exploring how disability can contribute to knowledge creation in a way that benefits both disabled and non-disabled persons.
    2. fosters the principles of non-discrimination, appreciation of diversity and tolerance;
    3. Enhances accessibility and flexibility. Allowing for different learning styles and content that makes the curriculum relevant to learners and society.
  2. Curriculum development, which involves:
    1. Reviewing the existing curriculum and adopting a methodology for the same. The existing curriculum and texts may be critiqued for:
      • discriminatory language, ideas, and doctrine;
      • omission of issues of importance to individuals with disabilities;
      • failure to consider the perspective of individuals with disabilities;
      • signs of "disability consciousness," that is, an ideology of subordination of individuals with disabilities
      • Existing assumptions which run contrary to disability ideology/experience of persons with disability
    2. Providing for an inclusive curriculum should take into consideration:
      • Inclusion of issues significant to persons with disability in the curriculum
      • Revamping those parts of the existing course, which may appear disability-neutral, but render disability experience invisible, or might be implemented/ understood differently if disability is taken into account
      • Bringing the context of disability experience
    3. Looking at a wider ambit by including the review of courses, curricula, and pedagogic methods, therefore, also developing and encouraging the use of new methods and ways of learning and teaching.
  3. Periodic review of the curriculum
  4. Simultaneously providing support mechanisms for implementation. This may include:
    1. Education of teaching and non-teaching staff, which includes:
      1. Training with respect to addressing student performances, support mechanisms, assessment procedures; familiarizing with the new curricula
      2. Providing for pre-service and in-service teacher education programmes and realigning them in view of the above
    2. Revising existing textbooks and teaching materials
  5. Formulation of programmes for the implementation of these; advise on policy making
    1. All education policies to be based on the revised definitions of inclusive education and curriculum
    2. Policy to be made on the basis that inclusion is a rights issue
  6. Involve the participation of various actors in the process of curriculum development, especially students and persons with disability. Participation should be at all levels: formulation, implementation and monitoring.

    Developing ways to measure the impact of inclusive curriculum, and monitoring the progress made

  7. Harnessing new information and communication technologies, which may help in knowledge dissemination, effective learning and development of efficient education services; and combining them with more traditional technologies.

Employment Work Occupation

This chapter like the one on education has been heavily informed by the experience of PWDA Employment chapter. A number of decisions taken by the sub-group are informed by that experience. Other than the PWDA, the sub-group was greatly aware of the shrinking public sector and the need to expand avenues of economic empowerment be it by opening the doors of the private sector; or by promoting entrepreneurship and skill development. The need to address the livelihood entitlements of people in the rural area was also voiced. Even as the reality of shrinking employment in the public sector was acknowledged, the necessity of programs of affirmative action most especially reservations was undisputed. Whether these reservations should also extend to promotion was an issue on which no consensus could be reached in the sub-group and the matter has been referred to the committee.

As it stands the broad structure of the chapter is as follows:

  • It shall weave in the principle of Equality and Non Discrimination in the realm of Work Employment and Occupation
    • This would mean no discrimination on grounds of disability
    • Provision for reasonable accommodation
    • Provision for affirmative action in terms of reservations.
  • In order to enhance the implementation of the right of non discrimination it was suggested that the committee recommend the setting up of a Public Service Commission which will weed out the discriminatory content of all recruitment rules.
  • Also the statute should make provision for formulating disability friendly model service rules which can be the basis for all service rules.
  • Enhance the percentage of reservation and distribute it according to disability
  • Sub group suggested 6% reservation
  • Reservations in private sector can be incentivized but mandating needs to be a more careful exercise
  • Reservations in promotions was contentious and has been referred to the full committee
  • The full Committee would also have to examine whether the banding of disabilities as suggested by the subgroup is acceptable?
  • As a result of the PWDA experience the sub-group has only permitted identification of jobs for preferential treatment. Otherwise reservations would be available against all vacancies.
  • No provision shall be made whereby establishments can seek exemption from the purview of exemptions.
  • Reservation in development schemes
  • Preferences in government purchases
  • Inducting PD in employment generation, skill development, livelihood initiatives and programmatic interventions
  • Need to acknowledge the creative and entrepreneurial capabilities of PD's and correlative obligation on the State to formulate appropriate schemes for development of those capabilities
  • Require consideration of which kind of programs should find express mention in the statute
  • The sub group on Employment may examine the suggestions made during the 29th Sep to 1st Oct 2010 meeting and make their recommendations to the Committee. [ These suggestions have been included in the Minutes of this meeting]
  • Additional Issues which merit consideration by reason of the CRPD but have not been addressed till date
    • Safe and healthy work conditions
    • Labour and trade union rights
    • Assistance in finding, obtaining, maintaining and returning to employment
    • Protection from Harassment and Redress of Grievances

Social Security

This right has been programmatically formulated by the sub group working on it. The sub group has recommended the following programmatic interventions:

  • Housing, shelter, land, food security and social security
  • Social Security included health insurance, pension unemployment allowance
  • Special Importance has to be accorded to the standard of living, especially for women and children with disability.
  • Inclusion of provisions for safe drinking water and proper sanitation, especially in the rural sector.

The sub group may consider the various suggestions it received for this chapter in the 29th Sep -1st Oct 2010 Meeting and make its recommendations for the consideration of the Committee [These suggestions have been included in the minutes of the meeting]

Right to Health

This right is also now being considered by the entire committee even as Dr. Dharmendra is leading the discussion. For the convenience of deliberation the CRPD mandate and the suggestions received by the Committee are being included.

CRPD Mandate

Asserting the value of the life of PD's

  • Highest attainable standard of health without discrimination
  • Access to health services without discrimination
  • Even as the CRPD privileges the social model it also recognizes the fact of impairment
  • Holistic construction of Health
  • Equality and Non Discrimination
  • Same range, quality, and standard of free or affordable health care as provided to other persons
  • Sexual and reproductive health
  • Population based public -health programs
  • No discrimination in health insurance
  • No discrimination in life insurance

Right to Disability Specific Services

  • Services needed specifically because of disabilities
  • Early identification, intervention and prevention of further disabilities
  • Primary prevention programs would not be covered by this law

Need to build entitlement into law

Other than the generic right of equality and non discrimination does the Committee wish to create any particular entitlements for any specific disabilities? This question may be especially relevant for the medical disabilities.

Administration of Health Services

  • Close connect between this article and the right to legal capacity liberty and integrity
  • Service on the basis of free and informed consent
  • Waiver of this condition on an equal basis with others. The Committee would need to consider how ethical principles such as confidentiality; free and informed consent and no force should be inducted in the law.

Question of Vulnerable Populations

  • How should twin tracking be undertaken for women and children
  • Should there be explicit mention for the aged

The Committee would also need to examine the report of the parallel group working on health. This report has emphasized on the fact that persons with disabilities require a greater degree and standard of health care; and that there is need to recognize the fact that they are likely to spend much more for their health care needs; and they will utilize the health care system much more. Consequently, there is a need to consider them as 'priority population' within the realm of health care.

Following salient features/aspects emerged from the report:

  • This report has defined health as a state of physical and mental, social, economic and cultural well being to the highest attainable standard conducive to living a life with dignity, without impinging on the capacity to make choices, individual autonomy and legal capacity. From this operational definition, the report has delved into various aspects such as accessibility (the right to access the full range of quality and affordable healthcare, especially during the times of natural and man-made disasters, conflicts and humanitarian emergencies.
  • Accessibility was spoken of in terms of physical structure, building, medical equipment, availability of trained personal assistance etc.), availability of health care services within close proximity, training of health care professionals, non-discrimination, support mechanisms, awareness and dissemination of information in accessible formats, sexual and reproductive health etc.
  • The right to health in the context of women and girls has been specifically discussed, as also the health concerns of children with disabilities (especially in the context of early identification and intervention).
  • The need to address the concerns of elderly with disabilities has also been highlighted, particularly in the context of its inclusion in various social security measures.
  • The overarching attempt is to facilitate the co-existence of specific allowances for disability and universal legal entitlements at the same time.

Habilitation and Rehabilitation

This right shall now be deliberated upon and settled by the entire Committee even as Mr. Bhushan Punani is leading the discussion. Suggestions on this segment have been made by other sub groups and by civil society members. The Committee has also been looking at the CRPD mandate. To facilitate further deliberation on the right the CRPD mandate and the suggestions received on this right are being collated in this part of the consensus paper.

CRPD Mandate

  • CRPD mandate not just a professional medical one
  • Privileging of Peer Support
  • Health about impairments habilitation and rehabilitation about barriers
  • Hence programs to lower barriers are the concern of this article
  • Outcome oriented outlook
  • To attain and maintain maximum independence
  • Full physical, mental, social, and vocational ability
  • Full inclusion and participation in all aspects of life
  • Shall organize, strengthen and extend comprehensive services and programs
  • Employment
  • Education
  • Social Services
  • Promote availability knowledge and use of assistive devices and technologies

Suggestions on the substantive content of this right

  • Institutions cannot be a permanent living option.
  • Residential services on short term (a week to 10 days or so) on a hospice, recovery and retreat basis can be provided for, which are non custodial, offering a range of alternatives and catering to all the fitness and well being needs of all PDs.
  • Integration into the public health system: All medical and tertiary care needs can be provided in an integrated manner through the strengthening of public health system. Capacity building of doctors, and all staff linked to the medical system is a must. Integration with MOHFW on this aspect must be dialogued about.
  • The first time a person or family members recognize disability is a critical step where liberties are often compromised. Provisions must refer to preservation of right to liberty in the first instance where it is 'discovered'. Early intervention, diagnostic practices, and service delivery must be integrated and sensitive. In most of these interventions, children or young adults are involved, so developmental concerns must be kept in mind, ensuring quality of life in the long term, and protections from deskilling and from multiplying barriers (education, work, friendships, relationships, marriage, property, and other legal, social barriers) Input for health and rehabilitation subgroup.
  • All services must be provided in natural living environments to maximise community and family support for PDs.
  • There must be good quality aids and appliances, which should also be subsidized.
  • Strong support groups should be created for persons with certain forms of physical disability (eg. spinal cord injuries or muscular dystrophy).
  • Rehabilitation services should be affordable, appropriate, and accessible and people should be made aware of them.
  • There should be special emphasis of rehabilitation schemes in the rural sector.

A regulated program needs to be established in all disabilities so that there is a timely phasing out of custodial institutions, with tandem development of community services (community living programs, group homes, parents' committees, etc.) and social safeguards for the institutionalised persons. A 'ramping facility' needs to be provided in law so that people from institutions can come into the mainstream.

Leisure Culture and Sport

The following points shall be drawn upon to construct this right in the new law.

Provisions in the Law

  • All cultural/recreational programmes shall have multi sensory features to cater all persons with disability ( Braille form, hearing loops, interpreters and provision of designing the programme for persons with intellectual impairment)
  • All opportunities for recreation, leisure, sports and cultural activities are inclusive.
  • Persons with disability have a right to lead a good quality life and be a part of mainstream society. In order to make them an integral part of the society, it is imperative that they are provided access,, opportunities, and encouragement to take part on an equal basis with others in cultural life, recreation, leisure an sports. This is an aspect which needs taking appropriate actions to ensure that persons with disabilities take part in mainstream activities as well as disability specific activities particularly in the area of culture, sports and recreation. This would necessitate development and expansion of facilities, allocation of appropriate resources so that they can enjoy their rights without discrimination.
  • The appropriate Government and local authorities shall allocate adequate funds to make it possible for better utilization of existing facilities and opportunities. They should also promote creation of opportunities for further development and utilization of existing but latent creative, artistic and intellectual potential of persons with disabilities, not only for their own benefit, but also for the enrichment of society.
  • No person will be denied access to and participation in sports, cultural, recreation and other co-curricular and extra-curricular activities on grounds of disabilities. A provision of adequate funds shall be made for ensuring promotion of these activities.
  • Ensure that children with disabilities have equal access with other children to participation in play, recreation and leisure and sporting activities, including activities in schools;

Mandatory Programs

Make recreation and sports a part of the academic curriculum. Opportunities should be provided to Physical Education teachers and support staff for promotion of facilities and encouragement of integrated sports, culture and leisure activities in their own environment.

Part VI: Constituencies Mandating Enhanced Attention

Other than dedicated chapters on women and children with disabilities, the Committee is also being asked to consider whether explicit provisions should be included for Home Bound Persons with Disabilities and Aged with

Women with disabilities

This part of the law is still work under progress. At present the sub-group working on the right has reached the following decisions

  • There will be an explicit mention of discrimination by reason of gender in the right to equality and non discrimination. Consequently the definition of reasonable accommodation shall be suitably gendered.
  • There is a need to introduce the gender component at least in
    • Education
    • Employment
    • Health
    • Abuse and Violence
    • Home and Family
  • Other than the above the Committee would also need to consider how to promote and ensure a gendered understanding of the rights guaranteed under the new law. The legal consultant has been mandated to research this issue and a till date report shall be presented on the 19th-20th Oct meeting.
  • There should be an explicit prohibition on non -medical hysterectomy
  • The Committee also needs to deliberate on whether accountability, monitoring, redress and punishment were required for the enforcement of every right for WD? This matter needs consideration because of the distinct nature of each strategy.

Children with Disabilities

The sub-group dealing with this issue is recommending the following format for this part of the law

Double twin track

  • Dedicated Chapter in the new law which would address the particular concerns of children
    • Recognition to evolving capacity of child and balancing it with best interest
    • Access to justice
    • Freedom from exploitation violence and abuse
    • Right to nationality and to know and be cared for by their parents
    • Retaining of fertility
    • Right to a family life
    • Right to live in the community and the issue of abandonment
    • Right to Alternative Care
    • Right to free and compulsory education
    • Disability specific health services
    • Social protection programs
    • Right to political participation
    • Right to leisure culture and sport
  • Appropriate reference to this legislation in other legislations where children with disabilities are mentioned Illustratively the Juvenile Justice ( Care and Protection of Children) Act 2000
  • Second reference to children in the appropriate right where denial is expressly acute. For example an express mention to children in freedom from violence abuse and exploitation; in the right to education; in right to home and family; in leisure culture and sport.

Part VII: Offences and Penalties

  • This chapter would contain a general provision whereby infringement of any provision of the new law would be rendered punishable.
  • There would be need to forge a linkage between the abuse and exploitation provisions and social security so that a distinction between wrongful and helpless behavior is maintained.
  • Each sub-group should put together a list of wrongful acts it would want penalized and recommend the same for the consideration of the Committee
  • Suggestions should be made on creative sanctions other than fine and imprisonment which would obtain conformity with the law.
  • Opportunity to reform being built in but repeated offences invite more stringent punishment
  • Suggestions made on this count in the 29th Sep to 1st Oct meeting should be considered by the Committee

Part VIII: Miscellaneous

  • In this chapter an express obligation on obtaining disability relevant statistical information in sample surveys and the census shall be included
  • The statute shall be accorded overriding effect and any law to the contrary shall to the extent of contravention be void.
  • Repeal of PWDA and any other laws.
  • If possible a schedule of all other laws which would be amended even if it is to direct the readers of those laws to this law.

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