SUGGETIONS ON "RIGHTS OF PERSONS WITH DISABILITIES ACT 2011 - UNCRPD

Dear All

In continuation look into the comments and suggestion made on the above cited draft prepared in view of UNCRPD.
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Reflections & Suggestions on Working Draft of the “Rights of Persons with Disabilities Act, 2011” (RPWD Act 2011)

1.Definition of Disability / Person with Disability:
•By UNCRPD: 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.
•By RPWDA 2011: ‘Person with disabilities’ is a person with any physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder full and effective participation in society on an equal basis with others
Explanation: The term “long-term” from UNCRPD has been removed while framing RPWDA 2011.
Suggestion: It will be better to retain the word “long-term” in RPWDA 2011.

2.Category & Definition of Disabilities:
• Not mentioned both in UNCRPD and RPWDA 2011.
• Not given the definition for each disability.
• Absence f this creates problems for mapping, data base, certification, availing services and benefits and all other issues related with their rehabilitation.
Explanation: RPWDA 2011 has not mentioned about the categories of disabilities like that of PWDA 1995 except mentioning six categories under 19A “Reservation”. PWDA 1995 groups disabilities into seven and later 2 were added in NT A 1995 i.e., that comes to 9. In view of technology, development and specialization, the move should be towards specialization rather than reverse system of generalization.
Suggestion:
o Define each disability
o Consider categorizing of disabilities into 10 as:
• Persons with Blindness
• Persons with Low Vision
• Persons hearing impairment
• Persons with speech impairment
• Persons with Locomotor impairment
• Persons with Leprosy Cured
• Persons with Mental Illness
• Persons with Multiple Disabilities.
• Persons with Autism & Cerebral Palsy
• Persons with Mental Retardation (than intellectual disability)

3.Guardianship:

• UNCRPD: No mention on the guardianship except “support system” may require to PWD in exercising their legal capacity.
• RPWDA 2011: under 18 Right to Education mentioned “guardian means a person having care and custody of a child and includes a natural guardian, a guardian appointed by a court or a statute”
• RPWDA 2011: under 7B (2) – Access to Support: Plenary guardianship is abolished. Any legislation, rule, regulation and practice following or prescribing the system of plenary guardianship shall, hereinafter, be void.
Explanation: RPWDA 2011 is adding more on guardianship than UNCRPD which talks on legal capacities and support system.

RPWDA 2011 contradicts what mentioned at 7B (2) & 18.

For us, support system is the part of our tradition whether the persons is with or without disability and more in case of later one. Nothing new to talk about it. Depending on the skills and needs of the individuals, the informal support network covering: parents, family members, relatives, friends, community members and others do provide the support on life cycle basis.

The provision of Legal Guardian in the National Trust Act is unique and certainly supports the needy based on their skills and needs. Lapses if any should be rectified with an effective mechanism. In general and particular in respect of severe and profound cases, this provision will work for positive support rather than negative.

Suggestion: Legal guardianship as defined in the National Trust Act 1999 with option to the authority or LLC or parents or PWD either to appoint or not based on the skills and needs should be retained. Addition of support system to the existing Legal guardianship is welcome.

4. Reservation:

In RPWDA 2011: Under 19A Reservation (1), proposed 6%, 1% for each category as:
• Persons with blindness and low vision
• Persons with hearing impairment and speech impairment
• Persons with locomotor disability, leprosy arrested,
• Persons with Cerebral palsy, muscular dystrophy
• Persons with autism, intellectual disability and mental illness
• Persons with multiple disabilities, deaf-blindness, multiple sclerosis.

Explanation:
• Grouping blindness and low vision not advisable as their occurrence, challenges, skills, needs and support are different
• The occurrence, challenges, skills, needs and support services are different for locomotor disability to leprosy cured
• Cerebral Palsy and Muscular Dystrophy needs to be separated as its occurrence, challenges, skills, needs and supports are different
• The occurrence, challenges, skills, needs and support systems are different for autism, intellectual disability (mental retardation), mental illness
• The sixth category can be grouped into multiple disabilities as most of them reflect two are more disabilities.
• Retaining persons with mental retardation may reflect the reality than the intellectual disability as it moves toward slow a learner which is the common phenomenon.

Suggestion:
Reservation should be 10%, 1% for each category.

As suggested under 2. Category of Disabilities, the suggested are 10 as:

• Persons with Blindness
• Persons with Low Vision
• Persons hearing impairment
• Persons with speech impairment
• Persons with Locomotor impairment
• Persons with Leprosy Cured
• Persons with Mental Illness
• Persons with Multiple Disabilities.
• Persons with Autism & Cerebral Palsy
• Persons with Mental Retardation (than intellectual disability)

5. Prevention of Disability:

o UNCRPD: under Article 2- Awareness Raising – not mentioned about the Prevention.
o RPWDA 2011: under 3 Awareness Raising – not mentioned about the Prevention.

Explanation: Prevention of disability should be the essential part of disability acts. It is the fact and every one believes in “Prevention is better than Cure”. While providing habilitation and rehabilitation services, in general and particularly at grass root level, every PWD, parent, community member and other stakeholders will be curious to know and understand the causes for disability. That means, every one including: government, NGO / service providers, professionals and other stakeholders should talk about the cause of disability and measures for the prevention of disability. If the disability is not prevented or reduced to the maximum extent possible in the given environment, then how to face or answer the following questions as:

o how long habilitation/ rehabilitation should be continued?
o in the complex situation of environment and life, disability is expected to increase?
o is it possible to mobilize the resources (men, material and money) matching to the increasing demand?
o is it the wise step to allow disability to occur to provide habilitation and rehabilitation services?
o knowing disability as the barrier (poverty, disability and development are the cause and consequences of each other), should allow disability to increase or eradicate / reduce to the maximum extent possible in the given environment?
o what will happen to our vision of working for the creation of “Disability Free Society (DFS) or Nation (DFN)?

Suggestion:

o Prevention of Disability should be part of the RPWDA 2011,
o Include it as a separate head,
o Include the content as:
o Awareness raising on:
 the causes of disability
 consequences of disability
 measures for the prevention of disability
 integration with other departments as a holistic approach.
o Every habilitation and rehabilitation centre should have the information cell for the prevention of disability.

6. Data Base – Create Disability Register at Panchayat Level (PRI).

Explanation: The present system of mapping has got several limitations and it is well accepted by all of us. Once Disability Register is introduced at Panchayat level, then the vision of; inclusion, mainstreaming & living together can be made as mission and further into reality.

7. Social Security – Creation of separate Cell.

Explanation: The question of every parent that “what will happen to the child after us?” is still not answered properly. In this direction, creation of separate cell with innovation will certainly do the needful for the social security.

8. Awareness – Creation of Information cum Resources Cell (IRC) at Panchayat Level.

Explanation: Once Disability Register is introduced at the Panchayat level, then IRC should be added. It is the fact that many of the services and benefits were not availed by the target groups mainly due to not knowing the same. It is also that many of the concerned departments are not aware or not disseminating the information to the target groups. Creation of IRC will certainly resolve several such barriers and helps for better display with transparency.

9. Separate Disability Commission.

Explanation: Getting the priority also supports for getting the right support for the right people at the right time. Like other marginalized groups, creation of separate Disability Commission helps for better access with rights and further gets right voice with support.

10. Separate University for disability.

Explanation: We all believe that education is the most powerful tool for the empowerment of the people. It is the fact that persons with disabilities participation in the education general and particularly in higher education are very poor due to presence of barriers covering physical, technological and attitudinal. Though efforts are being made to minimize the barriers, creation of separate university may help to get the right channel with barrier free environment.

11. Under the structure of Disability Right Authority (DRA): DRA Organizational structure should go to the panchayat level i. e., Central, State, District, Mandal & Panchayat Level.

Explanation: It is the fact that we all rare looking for the inclusion of persons with disabilities with the aim of living together at the community level itself, the structure of DRA should go down to the level of Panchayat as it the primary administrative unit for implementing every scheme and benefit. A post of Disability Community Worker at the Panchayat level will enhance the access, connectivity, relationships and to resolve many issues what their group is facing at present. It also support for the suggestions given at point 6 & 8 as state above.

12. In addition to suitable representation at Society and political level, there should be a nominated post at all levels.

Explanation: In the present system, there is a representation for every group which is based on several factors like: caste, religion, vulnerability and many others which are well know to all of us. This helps to get the platform to raise the issues and resolve the needs and demands. Like other groups, the person with disabilities know as vulnerable groups with significant percentage should get the privilege of nominated post at all levels i.e., starting from the Panchayat to Central.
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Hoping to reach the skateboarders for getting the right thing for the right people at right time...

with thanks