Thursday, March 3, 2011

New Law


I would request all readers reading this blog especially from Bangalore to give this post its due importance.
For people who are totally unaware of the new disability act coming into act shortly, I would like to provide some background information. A new law is being worked on for people in the disability sector as a replacement of the 1995 PWD (persons with disabilities) act. A working draft committee with a handful of very committed members (as I say handful, in terms of comparison to the number of people affected) is looking into it. This is an issue close to all our hearts especially the parents.  Read on. This is an abridged version of a mail that has been circulated among the members for a better understanding of the law and its shortcomings.
The issues are
·         The mandate of the committee, and specifically the one law multiple law issue
·         Inclusive education versus appropriate education
·         Consultation with the wider sector
·         The worth of parents with disabilities.

The mandate of the committee, and specifically the one law multiple law issue

    We are trying to promulgate a comprehensive law that will take into account the considerations of rights of all people with disabilities. However people in the disability sector are divided on the interpretation of this issue. One section wants all other disability laws including the existing National Trust Act be repealed, arguing that having separate laws will stigmatize persons with intellectual disabilities, the deaf blind, autism etc. However, persons with intellectual disabilities, the deaf blind, autism etc, which is the disenfranchised sectors, the population that the National Trust serves, are not in favor of repealing these acts right away.  Those of us who belong to these sections know that when we have one legislation for all, then the marginalized will be the ones who will be left out as happens even now. Yes the rights of all persons with disabilities should be covered under this new comprehensive rights law. But that does not prevent the existence of other laws, especially to address issues that concern those disabilities that have very high support needs.  Autism is one such sector where  even most adults need attention and support 24x7.
Inclusive education versus appropriate education
Although to send our child to a mainstream school is a dream all parents cherish, but unfortunately it is not possible in all cases. Another issue is the case of inclusive education along with special education versus inclusive education banning special education. As a mother of a child attending a special school, it is an option that must not be ruled out. What happens if the child is not coping up in a mainstream school? Also the mainstream schools will also take time to get better and equipped to meet the needs of the special child.
Consultation with the wider sector
Initial participation by members in various committees form the developmental disabilities were poor. One area of controversy regarding the wider consultation has been the question, who decides which sections of the disability sector should attend. Who determines this, the group with the largest presence??? I t is in this troubled scenario when state level consultations take place there is a need for adequate representation from the Autism spectrum Intellectual disabilities sector.
     The worth of parents with disabilities.
There is no doubt that persons with disabilities should be their own advocates and spokespersons. There is no question that nothing should happen for persons with disabilities without their consent and participation. One does not dispute that for those with mobility impairment, visual impairment, hearing impairment, and so on; they are the best persons to decide their destiny. Also they are capable of doing so.

     But what happens when these rights are intertwined with the rights of those disabilities that cannot articulate their rights?  My son cannot communicate what he did in school, how can he be expected to articulate for his rights. Should these disabilities go unrepresented because they cannot represent themselves? To trash the parents right to be supports for them, to trash parents right to articulate their rights for them, is just so unfortunate. What makes it more disturbing is that many of us parents feel so overwhelmed with the day to day struggle. We are their advocates and we must hold their hands.
Disability discourse rightly talks of giving power to Disabled Peoples Organisations (DPOs). At the same time parents, of those persons with disability who their rights, need to speak up and demand that Disabled Peoples Parents Organisations (DPPOs) have a right to speak for persons with disabilities such as autism.
        Thank you for the patience and time you have taken to read this. There is more to the law. As it concerns your child please take time out to read the proposed draft of the executive committee.

How can you participate?
To garner all the inputs from ASI and evolve a Consensus on this very important issue to present at the Bangalore Consultation, we will be having a meeting, details of which are below:
Kindly confirm your participation - with your name, organisation and contact details and any specific access requirement by the 2nd March 2011 as this will help us in making the necessary arrangements for the consultation.
As agreed during the State Coordination Meeting on 15th Feb 2011 at the Office of the Commissioner Disabilities, CBR Forum will be hosting the consultation with persons with disabilities, parents, NGOs, representatives from Govt. from Bangalore Urban District on the Working Draft on the Rights of Persons with Disabilities Act, 2011.
Some of the topics covered would include the
a)      The 5 non negotiables:

·         Parents to be acknowledged as having same status as persons with Disability to voice concerns of their ward. Wherever there is reference to Disabled Peoples Organisation, Parents Organisations to be also mentioned.
·         Legal Guardianship should remain intact in addition to Supported Decision Making. (ref ; pg 38, Sec-9 B)
·         While we support Inclusive Education as an ideal that all parents would aspire to, we need specialised services and special education services for some of our children. We do not support ONLY inclusive education.
·         Separate Training Facilities need to be available with Specialized Teachers to take care of persons with higher support needs such as in the case of Severe Intellectually Disabled person.
·         More Fund and grants to be allocated for Research and Development and Intervention programs for Disabilities such as Autism, which are relatively new, and less known.  
b)      Providing land at subsidized rates for these children, establishment of caregivers and their training…..
                 For those of you, interested in attending, I shall be happy to forward the complete briefing note that has been circulated. My id is vijirajmohan@yahoo.co.in /viji.rajmohan@gmail.com

The objective of the consultation is to: 
 
" To provide and overview of the content in the Working Draft 
" To collectively identify Gaps/ Areas that needs to be addressed in the Draft
" To document these Gaps and submit to the Commissioner (Disabilities) and SNAC by 10th March 2011

The consultation will be held on 7th and 8th Mar 2011 at Don Bosco, Milton Street, Bangalore - Tel: 25494760/ 25494758. You can confirm your attendance with Ruby Singh,  rubysingh_india@yahoo.co.in  ( 9741418103) /kavitha - kavitha@kilikili.org
                    



2 comments:

Balraj said...

Missed this one as I read your blog today - too late.

Is there any way to get connected thru email or phone? I am in Bangalore too. My son is 3 years 9 months old and he has been diagnosed with ASD (high functioning). I thought connecting with you would be helpful as you have great deal of information on Autism.

Thanks.

viji said...

My id is vijirajmohan@yahoo.co.in

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