The National Trust for Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities

Consultation Paper drafted under the auspices of the National Trust. 

Dr. Amita Dhanda
Gabor Gombos

I Introduction

The National Trust Act which was enacted in 1999 after a long gestation period was primarily prompted by the need to address the apprehension of parents (primarily of persons with intellectual disability) on the future of their wards after them. However by the time the NTA was enacted, the protective motivations of the original proposal were diluted with the inclusion of autonomy and self advocacy claims.

The 1999 Act also acknowledged that a guardian to manage the affairs of a person with disability could not be appointed merely by looking at the nature of the disability; instead the statute required that the needs of the individual person with disability should be examined and a guardian appointed only if required. This recognition of limited guardianship in the National Trust Act 1999 was one of the forward looking examples that the Ad Hoc Committee for the Drafting of the Convention on the Rights of Persons with Disabilities was apprised of whilst it deliberated on the legal capacity of persons with disabilities.  

Even as the National Trust Act 1999 adopted a forward looking approach, its provisions have been overtaken by events. The United Nations Convention on the Rights of Persons with Disabilities, which has been negotiated and drafted with the active involvement of persons with disabilities from all over the world, alters what States Parties need to do for persons with disabilities. India has signed and ratified the Convention on the Rights of Persons with Disabilities (hereinafter CRPD) and the CRPD having obtained the requisite number of ratifications came into force on 3rd of May 2008. In line with our international obligation we are now required to bring our laws in conformity with the international Convention. It is important that in b ringing the NTA in conformity with CRPD we are guided by both the text and the spirit of CRPD. It is also necessary that the suggestions for change are made by reading the CRPD as a whole and by placing the NTA within the context of Indian statutory law.

We have been guided by these considerations in formulating the following proposal for consultation.

II Reconsideration of Underlying Principles of NTA

The NTA regime is based on the presumption that some persons with disabilities, due to the nature of their disability, are incapable of making their own decisions; hence they do not possess legal capacity; and thus special protective arrangements need to be put in place for them. Consequently, the statute only makes caretaking arrangements for the named disabilities, proceeding on the presumption that such arrangements are only required for those disabilities.

The CRPD questions these presumptions of the NTA insofar as it recognizes that all persons with disabilities possess legal capacity and are persons before the law. The CRPD also acknowledges that some persons with disabilities may require support for the exercise of their legal capacity; it therefore places an obligation on States Parties to provide such support to persons with disabilities. However the fact that some persons with disabilities need support for the exercise of their legal capacity is no reason to deny the existence of the capacity. Thus the CRPD sets up a universal model of legal capacity whereby all persons with disability are recognized to possess legal capacity and support arrangements need to be so put in place, that they can be accessed or made available, as required by persons with disabilities. CRPD recognizes that protection based on legal incapacitation often results in a further barrier to equal participation in society; it therefore introduces an enabling legal framework which supports equal status and safeguards against abuses. This recognition of universal legal capacity in the CRPD mandates that: the NTA should explicitly recognize the legal capacity of persons with disabilities; and national laws which deny legal capacity of persons with disabilities are repealed. The CRPD would also require recognition to and facilitation of support networks. The support networks would be needed so that persons with disabilities are in no way disadvantaged in the exercise of legal capacity.

It is important to note that whilst CRPD stets up a regime of universal legal capacity by recognizing the legal capacity of all persons with disabilities; the NTA is a law with restricted application because it addresses the capacity deficits of certain named disabilities only.

In the light of the above the Consultation would need to address the following questions:

  • How should NTA be amended to incorporate the CRPD model of universal legal capacity?
  • Should the model be only extended to the named disabilities?
  • Or should the NTA be amended to make this model available to all disabilities?
  • What other amendments should be introduced in the NTA to bring the statute in conformity with the CRPD?

In what follows we provide reasoned answers to these questions.

Suggested Amendments with Reasons:

The NTA should introduced an Express Provision Recognizing Universal Legal Capacity and the provision should state that

All persons with disabilities have full legal capacity.

Reasons: Section 12 (3) of the NTA challenges the inextricable association of incapacity with some disabilities; it therefore requires that before appointing a guardian for a person with the named disability, an enquiry on the need of such guardian should be made; and a guardian should be appointed only if upon enquiry such guardian is considered necessary. The NTA accepts that in a particular case a persons with disability could be found to possess legal capacity; but it does not presume that persons with disability possess capacity like non disabled persons.

The general position of the law, as exemplified especially by the Contract Act 1872, is that all adult persons who have crossed the age of minority are presumed to possess legal capacity. Thus any person who alleges lack of capacity is required to prove it. This presumption does not extend to persons generally found in a state of unsound mind. In their case the law presumes lack of capacity and the person contending presence of capacity is required to prove it. Whilst legislation has restricted the presumption of lack of capacity on persons who are generally of unsound mind; the courts have not insisted on the requirement of generality. Once a person has been found to be with intellectual disability or living with mental illness, they have presumed that such person living with mental illness or intellectual disability lacked legal capacity. 

The CRPD requires that this overarching presumption of lack of capacity associated with persons with disabilities should be displaced and they should be treated on an equal basis with others. To fulfill this mandate of the CRPD it is necessary that the NTA states all persons with disabilities have full legal capacity.

The NTA provision should expressly state that Support Does not Diminish Capacity

This legal capacity is in no way diminished if a person with disabilities sets up a supported network to assist him in the exercise of this legal capacity.

Reasons: Once a persons with disabilities is found to lack legal capacity the law handles this situation of incapacity by appointing a guardian to manage the persons and property of the person with disabilities. The guardian then assumes the persona of the incapacitated person and takes all decision on his or her behalf. If the guardian is viewed as support it is necessary to note that this support is not extended by the existing Indian law without a finding that a person with disability lacks legal capacity. Art 12 of the CRPD allows for   support to be provided without a finding of incapacity. For NTA to provide support without diminishing capacity it is necessary that the new section should expressly state that accessing of support  by a person with disability in no way diminishes their legal capacity.

Role of National Trust in Providing Support

This new provision should state that nature of the responsibility assumed by National and to that end state:

The National Trust shall accord recognition to supported networks and offer assistance to persons with disabilities in setting up such networks.

Reasons: The CRPD places a duty on State Parties to provide support to persons with disability to assist in the exercise of legal capacity. Insofar as the National Trust is an autonomous statutory body which is supported by the government, and the NTA is aimed at promoting both the autonomy and independent living of persons with disabilities; it may be appropriate to fulfill this mandate of the CRPD by requiring the National Trust to offer assistance to persons with disabilities to set up support networks. This assistance could be provided in two kinds of ways: one, the National Trust could through its Local Level Committees accord recognition to the support networks that are created by persons with disabilities; and two, where it could assist persons with disabilities to set up the support networks.

The National Trust would need to provide this assistance to enable the paradigm of supported decision-making to displace the long subsisting familiar paradigm of guardianship or substituted decision-making. Recognition in the law alone will not without more dispel the long subsisting prejudice against persons with disabilities. For that prejudice to be dispelled, it is important that persons with disability should be seen to in fact function in society. For such functioning to in fact happen, it is important to put in place procedures, which would lower the barriers against persons with disabilities. The recognition of the supported network of persons with disabilities by the National Trust could be one such procedure.

Whilst some persons with disability would be able to put in place a supported network on their own and may only need the National Trust to assist them by recognizing the Network, others may require the National Trust to help them in setting up the Network. The inclusion of this provision in the NTA is being suggested to enable the Trust to devise mechanisms by which the shift from a paradigm of Substituted Decision-Making to a Paradigm of Supported Decision-Making can be made. Furthermore the active involvement of the Trust would also help putting in place, the safeguards required by CRPD, against abuse by supported networks.

Expand the Definition of Disability

The National Trust Act defines “persons with disability” to mean a person with autism, cerebral palsy, mental retardation or multiple disabilities. This restrictive definition needs to be altered.

The definition of disability should be altered in the NTA and the present restrictive model should be replaced with a universal model. This could be done by adopting the definition of disability incorporated in the CRPD.

Reasons: As already mentioned the definition of disability in NTA was prompted by the criterion of enhanced vulnerability.  Whilst a medicalized standard of enhanced impairment prompted the inclusion of cerebral palsy and multiple disabilities; psycho-social considerations dictated the induction of autism and mental retardation.  The creation of a specialized legal regime of the National Trust was also induced by the questionable legal status of the persons with the aforementioned disabilities. The need for substitute legal arrangements was especially felt by parents of persons with mental retardation because both law and practice attributed incapacity to their wards. A similar attribution of incapacity was practiced in reality towards the other disabilities. Whilst some of these were included in the NTA others were not.

The CRPD requires a stoppage of the legal attribution of incapacity against persons with disabilities thus removing a legal barrier that contributes to disability itself. Just the dismantling of the disqualifying regime in law would not alter the situation on the ground but the alteration of the law is a precondition to social change. Social attribution of incapacity is not restricted to persons excluded by the law, hence what the CRPD prompted change in the law would do is that it would bring persons with mental retardation and persons living with mental illness at par with other persons with disabilities. To make this statement is no way a denial of the aggravated exclusion and stigma faced by persons with intellectual and psychosocial disabilities. However it is aimed to emphasize that the new regime of legal capacity affords an opportunity for cross disability solidarity based on enabling paradigm of supported decision making and this opportunity would be seized if the NTA abandons the present restricted definition and adopts a more universal definition of disability. The continuation of the present definition may cause the named disabilities to be ghettoized in exclusionary regimes.

Further the new model of legal capacity can take off the ground only if imaginative support networks are created. In order to generate the political impetus to release resources for the creation of these networks, it is important for persons with disabilities to speak in one voice. The National Trust would also be able to further the enterprise of garnering support for persons with disabilities when the human interdependence of all persons with disabilities and all humans is emphasized.

With this amendment the NTA could be recast as the legal capacity and supported networks legislation for all persons with disabilities; whilst the other rights could be addressed in the Persons with Disabilities Act 1995, again, for all persons with disabilities.

Right to Participation

An express provision should be included in the NTA which states that:

The National Trust shall devise all approved programmes in active consultation with persons with disabilities and their organizations.

Reasons: The CRPD requires all programs and policies for persons with disabilities to be formulated with their active participation. The National Trust has resources for initiating approved programs. The CRPD would require the National Trust to consult with persons with disabilities to identify specific areas of action to enable persons with disabilities to exercise their legal capacity and starting programs accordingly with the active participation of an in consultation with persons with disabilities.

Various Draft Amendments to NTA




















Professor Law National Academy of Legal Studies and Research, Hyderabad, NGO Delegate to the United Nations Ad Hoc Committee on the Convention on the Rights of Persons with Disabilities. Top

Ashoka Fellow Centre for Advocacy and Mental Health, Bapu Trust Pune, Senior advocacy Officer, Mental Disability Advocacy Center Budapest, NGO Delegate to the United Nations Ad Hoc Committee on the Convention on the Rights of Persons with Disabilities. Top

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