September 22, 2010
At the very outset, the tone of the meeting was set by outlining in brief the standard of health envisaged in Article 25 of the United Nations Convention on the Rights of Persons with Disabilities (Hereinafter CRPD)
In furtherance of the recognition of the fact that the general right to health does not take into account the specific needs of persons with disabilities, it was seen that the CRPD effectively addressed the critical experiences of persons with disabilities and consequently brought to the fore an effective articulation of their right to health.
Due emphasis was laid on the adoption of a holistic view of 'Health' under the CRPD-in light of the absence of the specific enumeration of mental health, as distinct from physical health. After extensive negotiation, this dichotomy was agreed to deliberately be avoided so as to break free from the interventions that pervade the realm of physical and mental health as a result of the said distinction.
Insistence on the enjoyment of the highest attainable standard of health without discrimination on the basis of disability essentially underscores the all-important notion that a disabled life is as valuable as any other life. There is recognition of the fact that standards of health are individuated and that there is no universal standard of the "able body" from whose standpoint any other construct of the human self can be viewed as an aberration. This recognition of the difference in the standard of health is the core point which the chapeau to Article 25 seeks to drive home.
Also, there is a need to specifically enumerate the need for gender sensitive health care. This is so because certain (rather) non-negotiable precautions/norms/provisions which are observed otherwise as a matter of due course are absent in the case of women with disabilities. Thus, there is a greater need to ensure conformity to ordinary protocol in such circumstances.
Moreover, Article 25 (a), in so far as it warrants the provision of the same range, quality and standard of free or affordable health care as provided to other persons again highlights the need to hold a disabled life with the same regard as any other, and assumes special significance in the realm of the jurisprudence surrounding equality and non-discrimination, as also the right to life under Article 10. It is particularly important in the area of sexual and reproductive health so as to break free from the stereotype that tends to view persons with disabilities as asexual and consequently consider it non-problematic to deny them this right. At the same time, care must be taken to not restrict the scope of this right to mean simply the right to abortion.1
Also, the population based public health programmes must also be viewed in the larger context of principles of equality and non-discrimination.
Further, Article 25(b) enumerates specific requirements of persons with disabilities so as to duly accommodate their health care needs.
It is extremely pertinent to note that primary prevention finds no mention in the CRPD. This is largely because it does not concern itself with the discourse on 'disability rights'. Also, budgetary concerns do not warrant such a mention which would essentially jeopardize the interests of the actual stakeholders by subsidizing their interests2. However, due recognition is accorded to secondary prevention so as to address further exacerbation or aggravation of the condition. Thus, while primary prevention is a public health issue concerning the whole country, secondary prevention is specific to persons with disabilities and consequently calls for the allocation of dedicated monies.
Article 25(c) seeks to ensure that the said services are provided as close as possible to the people's own communities. (Concerns were raised herein as to whether the same would translate into integration. However, it was decided that the approach to be adopted-be it integration or otherwise- could only be conclusively determined once the standard to be attained was clearly identified)
Article 25(d) identifies certain important norms, viz. same quality, free and informed consent, capacity building for health care personnel, upholding ethical standard both within the public and private sphere etc. Extensive discussion followed on the issue of free and informed consent and intricate connections were observed with liberty, autonomy, integrity, privacy etc. It was also seen that the notion of free and informed consent must be carefully deconstructed in the context of support (which should not be ousted under any circumstance) vis-à-vis substituted consent. That is to say, the operationalization of free and informed consent must not negate the regime of legal capacity.
The debate to distinguish between support and guardianship essentially highlighted the paradigm shift that had been brought about from the hitherto existing regime of guardianship-which came into play only after arriving at a finding of incompetence- to that of support-which played itself out after duly recognizing legal capacity.
Lastly, Article 25(f) articulates the right to health and life in basic terms in terms of provision of food and fluids.
In the afternoon session, the parallel group working on this aspect presented its report which took off from the essential standpoint that persons with disabilities require a greater degree and standard of health care and that one needs to recognize the fact that they are likely to spend on as well as utilize the health care system 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:
After providing an operational definition3, it 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 was specifically discussed, as also the health concerns of children with disabilities (Specially in the context of early identification and intervention). The need to address the concerns of elderly with disabilities was also highlighted, particularly in the context of their inclusion in various social security measures.
The overarching attempt was to facilitate the co-existence of specific allowances for disability and universal legal entitlements at the same time.
Following the presentation, a discussion on the physical/mental dichotomy in the context of health care ensued again, further reinforcing the need to build a unified construct of heath, in keeping with the paradigm proposed by the CRPD.4
At the very outset, it was clarified that it was not permissible to proceed from the definition of 'rehabilitation' laid down by the World Health Organization (WHO) for it proceeds from a purely professional standpoint without incorporating stake holders' perspective-with no mention of peer support, community support etc.
On the other hand, the CRPD has sought to include appropriate and effective measures so as to break free from a professional/medical model and attain and retain maximum independence, full inclusion, participation etc. through peer support. To this end, States Parties shall take effective and appropriate measures to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life.
Programmes mandating peer support (both in terms of funding and protocol provision) were seen to be critical for effective rehabilitation.
It was seen that while health concerns itself with impairments, habilitation and rehabilitation concerns itself with ways and means of addressing the barriers. Thus, the construction of a person with disability under the CRPD is reflective of the said intersection between the barriers and impairments.
The proposal to create a cadre for disability rights under the larger ambit of Disability Services was first mooted during the discussions with the Human Resource Development Committee and the following propositions emerged:
Recommendations to the same effect are purported to be made by the committee. At the same time, it was recognized that such services cannot be created with immediate effect. Consequently, discussions surrounded the possibility of creating certain posts in the meanwhile towards the attainment of the said end. It was recommended that training should be imparted to personal care attendants-both general and specific in nature, with the specific component requiring the care giver to undergo a period of internship with the individual care seeker in question. Such training should, at the core, seek to change mindsets.
Also, the creation of a mandatory peer support programme could possibly be linked to the 'specific services' aspect of the cadre which would essentially work as a professionally equipped community of a certain stature.
Thus, it came to be seen that for present purposes, rehabilitation was the strongest site so as to start with efforts towards facilitating the requisite training and capacity building.
Towards the end, certain other ancillary concerns were also raised by members of the committee:
1 For practical purposes, it is seen that sexual and reproductive health often plays itself out as the right to abortion. Consequently, many pro-life countries have expressed specific reservations to this effect.
2 Herein, it must be clarified that primary prevention is not problematic per se, but the same must not be done at the cost of the rights and monies of persons with disabilities.
3 Health is 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.
4 This becomes particularly important in light of the fact that mental health, in such a context, is more often than not reduced to being synonymous with 'mental illness'. Also, it was seen that the report, at various places, had mentioned mental health separately, and the integration envisaged by the CRPD was not reflected here