Certification and the RPD Bill 2014

By Asmita Banerjee, Rahul Chakraborty & Gautam Chaudhury

Historically (and, to a great extent, the practice prevailing in our country), the focus of assessment of disability was the extent of impairment/disability one had (WHO ICIDH 1981) and interventions were aimed at normalizing the individual by reducing the effect of disability and trying to make the person fit in the existing environment. This is based on an individualistic view in which the problem lies within the individual and forms the basis of the ‘medical model.’ This individualistic and medicalised view has been considered to be biased by disability activists and organizations who argue that persons are ‘disabled’ because of the structure of the society in which they live, which does not accommodate their impairment or  lower the barriers by creating an enabling environment which enhances participation in everyday life on equal basis with others. Thus, the social model focuses on the environment – physical, social, and attitudinal – that makes a person with impairment, a person with disability.

The WHO in their International Classification of Functioning, Disability and Health (ICF 2001) defines disability as characterized by “the outcome or result of a complex relationship between an individual’s health condition and personal factors, and of the external factors that represent the circumstances in which the individual lives.” Thus, ICF looks at disability as a combination of individual, institutional and societal factors that define the environment within which a person with impairment lives. “In ICF, the term functioning refers to all the body functions, activities and participation, while disability is similarly an umbrella term for impairments, activity limitations and participation restrictions.” It focuses on the body, individual limitations and participation and does not stress the interaction between individual and society in the definition of disability, thus in its present form does not offer a broader perspective for defining policies. Though ICF has been now widely accepted, yet it has been used in a limited way. Most developing countries have hardly used it for assessment purposes as, in its present form, it’s too complex to be used as a disability screening instrument.

In 2006 the UNCRPD defined disability as “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

In this definition, the focus is primarily on the barriers and not on the impairment/ disability (health conditions). Impairment is mentioned as ‘long term’.

As the UNCRPD has been conceptualized for a global following, it requires some relevant and appropriate modifications depending on the context with an ultimate aim of conformity with the CRPD. One has to keep in mind the vast majority of the population of the country.

In India, in the PWD Act 1995, disability is defined as “person with disability” means “a person suffering from not less than forty per cent of any disability as certified by a medical authority.” This is based on the medical assessment of the extent of impairment a person has. There are guidelines set up by the government, based on which the assessment (of impairment) is done. In reality in many instances it is done rather in an arbitrary manner.

The draft RPD Bill 2014 (which states in the beginning ‘to give effect to the United Nations Convention on the Rights of Persons with Disabilities and for matters connected therewith or incidental thereto’) introduces two definitions of disability, which are rather ambiguous: 

“Person with disability” means a person with long term physical, mental, intellectual or sensory impairment which in interaction with barriers in the environment hinder his full and effective participation in society equally with others. 

“Person with benchmark disability” means a person with not less than forty per cent of a specified disability where specified disability has not been defined in measurable terms and includes a person with disability where specified disability has been defined in measurable terms, as certified by the certifying authority;

Though the composition of the or certification is not mentioned, it is not very clear on what basis this 40% is derived (“the central government will notify guidelines”). It is likely that the norms of the PWD Act 1995 are likely to continue. The present guidelines are based on the extent of the impairment one has.

Most of the entitlements/benefits are only for the “benchmark disabilities.” The bill is ambiguous about, shall we say, persons with “non-bench mark disability.”

It appears that the first definition is in congruence with the UNCRPD definition (after the amendment introduced in the RS) to please certain groups and be politically correct. Whereas, the second one appears to be, in disguise, the existing one which actually would matter as the majority of the entitlements and benefits that are mentioned in the bill are meant for persons with benchmark disabilities only.

Interestingly though the words ‘in interaction with barriers in the environment’ is used in the definition, yet one wonders whether any mechanism is thought of to identify the barriers and try to remove/lower them. It must also be noted that the definition of Rehabilitation does not address the ‘barriers’ at all.

A law having two definitions is likely to cause ambiguity.

The other issue is around naming certain conditions that would qualify as disability. The schedule rather has a mixture of impairments and conditions (e.g. locomotor and muscular dystrophy). It defies all logic why one should mention conditions as it is limitless and, as medical science is improving, many new conditions are going to come up. The bill also lists ‘sickle cell anaemia’ and ‘Thalassemia’ as conditions which are to be recognised as disability. One wonders why then conditions like HIV & AIDS, diabetes etc. are excluded. In general, as impairment arises from a health condition, the first assessment is done by health personnel. In our country the story ends there (this was in congruence with the bill without the amendments). In some countries, one can then approach the welfare department or the employment department to have an assessment to find out what kind of support (includes environmental modification and reasonable accommodation at home/workplace etc. and support or maintenance allowances) one may need and can have access to.

Once again if one looks at the definition it states ‘long term impairment’. It does not name any conditions.

The RPD Bill 2014 also has another definition – ‘persons with high support need.’ In this regard if “any person with benchmark disability who considers himself to be in need of high support, or any person or organisation on his or her behalf, may apply to an authority, to be notified by the appropriate Government, requesting to provide high support” (chapter VII), who after receiving a report from an assessment board will decide on the matter “subject to relevant schemes and orders of the appropriate Government in this behalf.” (One assumes that this is not confined to ‘pension’ and ‘care giver allowances’ as these two schemes are mentioned in the bill).

If this is thought to be feasible, then why not the following idea, provided it is not restricted to a few listed conditions.

Considering the vast population with very limited or virtually no appropriate services, identifying and lowering the barriers at home and community could make a remarkable difference in the lives of many (including persons in need of ‘high support’). The local government, authorities, the civil society, family, and the disabled person herself/himself could play a very proactive role in this process. The first part is not to look at the impairment but to identify the barriers. Then, some appropriate modifications/changes (at least those that are feasible at that point of time in the given context) for some of these can make a remarkable difference at least for some to begin with. Obviously some orientation/sensitisation on the issue – ‘identifying and lowering barriers and creating an enabling environment’ – would be of immense help. This has the possibility of having an impact on the outlook with persons with disabilities as well on members of the community where they live. It has the possibility of bringing about a change for the vast majority. Obviously, a twin track approach (at the level of the individual and the barriers) would (perhaps) be more effective. But then the reality is that a large number of especially the adult population, who are poor, perhaps do not need any ‘sophisticated’ rehabilitation (health related) interventions.

Whether this is acceptable to the law makers and different other groups to be made part of the law is rather irrelevant. Initiating such a process can go a long way to make a difference in the lives of the majority disability population. In the rights perspective this is a part of the duty and responsibility of the primary (the state) and secondary (includes civil society) duty bearers. An initiation in this direction would sow the seeds of ‘progressive realisation’.

This approach, then, can justify the definition of persons with disabilities.

Authors: 

Asmita Banerjee is a post-graduate in Human Development and working in the social development sector since last 8 years.

Rahul Chakraborty is a post-graduate in Social Work and a development professional for more than 10 years.

Gautam Chaudhury is a disability development professional for around 40 years and Founder Director of SANCHAR, a non-governmental organisation working in the field of Disability.

References

1. Guidelines for evaluation of various disabilities and procedure for certification- Notification No.154. The Gazette of India Extraordinary Part I – Section 1 New Delhi, Wednesday, June 13, 2001

2. International Classification of Impairments, Disabilities, and Handicaps- WHO 1981

3. International Classification of Functioning, Disability and Health – WHO 2001

4. The Rights of Persons with disability Bill 2014 – as introduced in the Rajya Sabha on 7 February 2014 (with amendments)

5.Using International Classification of Functioning, Disability and Health to understand challenges in community reintegration of injured veterans- Linda J. Resnik, PhD, PT, OCS; Susan M. Allen, PhD – JRRD Volume 44 Number 7 2007

6.The International Classification of Functioning, Disability and Health: a systematic review of observational studies – Luciana Castaneda, Anke Bergmann, Ligia Bahia – Revista Brasileira de Epidemiologia – vol.17 no.2 São Paulo Apr./June 2014

***

For more stories, read Café Dissensus Everyday, the blog of Café Dissensus Magazine.