Aur Raju ban gaya plantation role model! | iGovernment.in

Congratulations to a forward looking SM Raju, Bihar is in safe hands with such officers and a CM like Nitishji.

Aur Raju ban gaya plantation role model! iGovernment.in

regards
SC Vashishth
Consultant-Development Projects

Right to Education Act and Children with Disabilities

Dear Friends,

Now the Ministry of HRD, Govt. of India has indicated that what best they can do to include Children with Disabilities in the RTE Act  2009 is by including them under the Definition of "Disadvantaged Children". And that is their bit.

Any thing further is not their cup of tea and Ministry of Social Justice should do something to amend the Persons with disabilities Act. There can not be any thing worse than this. The fact is that the children with disabilities are no one's babies when it comes to inclusion and equal rights.

Isn't it simple that Ministry of HRD being the nodal ministry for Education  should also deal with education of children with disability? I fail to understand as to how education of children with disabilities becomes a welfare issue? This needs to stop right now and the RTE bill needs to be amended conclusively to provide for all support, special educators, therapists,  reasonable accommodation and inclusive schools based on universal design. Nothing less than that is going to be acceptable to us!

There is good news that Delhi Government is changing the Recruitment Rules of the Teachers to include Recruitment Rules for Special Educators and related matters after the recent Delhi High Court judgement in Social Jurists PIL. However, the situation in other states is pathetic and grave.

The Education for All "सर्व शिक्षा अभियान" has actually failed to cater to the needs of children with disabilities in an inclusive set up. It is impossible to include children in the mainstream without proper preparation of teachers, infrastructure and support systems. Also only appointment of two Special Educators per school in the National Capital Territory Region will not serve the larger needs and the states have to take proactive measures to address the issue. Till today, there is no talk of developmental therapists, speech therapists, mobility trainers and other rehabilitation professional being included as a part of mainstream schools which are otherwise a necessary part of Special schools run by NGOs.

The First Country Report on action taken by Indian Government on UNCRPD is due in May 2010. The Union Government has sought reports from States as what actions they have taken in these areas and I received a frantic call from one leading State NGO from one of the states asking that the State Welfare department is asking about UNCRPD and what is that Government is required to do in light of this. I was taken aback but this is sadly the truth! Many departments in state governments are not even aware or have taken no pains to even open the convention document that Union Government might have sent to them.

In such situation, there is an urgent and calling need for the NGOs and the DPOs to act as monitors and get the systems working. On its own, nothing would happen and we need to show the road to the implementing agencies and the Governments. Its our cause and we can't wait for it to happen on its own, at the whims and fancies of State. The Persons with Disabilities Act is a live testimony to this which has not been fully implemented even after nearly one and a half decade of its being passed by the Parliament of India.

I see a new role for the NGOs - that of  "Facilitators of Change" and "Advocacy Organisations" and "Resource Centres" to guide the Government rather than merely restricting themselves to the role of a Service Provider.

Its when you get engaged in Providing Service, you have no time or energy left to act as Resource Centre or advocacy organisation and also you keep chasing the grant applications to the Government to run the schools and other services. And that is what precisely the Government want you to remain engaged in!

We have to understand that education of children with disability is a fundamental right of the children which the Government is bound to provide for in terms of  systems, infrastructure and finance. Thus there is no point in NGOs seeking grants which are often very subjective and do not cover even the 50% of the expenses if rightfully done. I had taken up few cases for NGOs where the workers of the NGOs went against their employers in the Labour Courts seeking minimum wages and what I learnt from NGOs was that the grant that comes for a helper is merely 2000 Rupees which is far less than the minimum wage of an unskilled worker in Delhi. The matters are pending in High Court where Grant making Ministries have been impleaded as necessary parties for proper adjudication of the case! And I am well aware what is going to be the outcome of such petition!

Therefore it is the right time for NGOs to redcue their role as Service Provider and gradually move towards their new and calling role as Resource Centres, Research bodies and be a part of Advocacy and Monitoring mechanism to ensure that the rights of persons with disability to live with dignity in society on an equal basis with others are realised to its full and rights enshrined in the UN Convention on the Rights of Persons with Disabilities are progressively realised.

Another worrying issue that we should be concerned with too is the second amendment which HRD ministry is contemplating to bring in RTE Act to satisfy the powerful lobby of minority institutions who do not want to be governed by State Laws at the same time want to continue receiving grants/aids from the Government. These schools if exempted from constituting School Management Committees (which is a powerful tool to increase citizen's participation in the school management and check misuse of public funds) they could do what they like without any external check including refusal to take in children with disabilities. The move should be resisted by one and all to ensure participation of civil society and stakeholders in the process of education and maintain transparency in the delivery of quality education to all including children with disabilities.

regards

Subhash Chandra Vashishth, Advocate-Disability Rigths, subhashvashishth@gmail.com, 9811125521

To read the press coverage on RTE click here

RTE Act to cover kids with disabilities

NEW DELHI: Children with physical, learning and speech disabilities would now be put under the disadvantaged category in the Right to Education Act.

The Cabinet will soon take up HRD ministry's cabinet note seeking amendment in the RTE Act. Another amendment seeks to exempt schools run by minority organisations from setting up School Management Committees.

However, the amendment bill will be introduced only in the budget session of Parliament.

In the last session of Parliament, when the RTE Bill was passed, disabled rights groups had protested against non-inclusion of disabled children in the disadvantaged category. Disability will be further explained to include disabilities mentioned in the People with Disabilities Act and National Trust Act. But since PWD Act does not include cerebral palsy, autism and multiple disability, RTE amendment bill will specifically mention disabilities like dyslexia, aphasia and learning and speech disabilities.

Sources, however, said amending RTE to include disabilities is not enough. "Social justice ministry should move a comprehensive amendment bill to amend PWD Act. HRD ministry has done its bit," a source said.

The second amendment states that schools run by minority bodies will be exempted from setting up School Management Committees. The proposed amendment, sources said, will exclude schools managed by minority organisations from constituting School Management Committees. Right now, only unaided schools not receiving any kind of aid or grant from the government or local authorities are excluded from setting up school management committees (SMCs).

The amendment comes in the wake of demand from many states and minority-run institutions that they be exempted from setting up SMCs because it contravenes Article 30 of the Constitution that gives minorities right to establish and administer educational institutions. The amendment will be carried out in sub-clauses of clause (n) of Section 2 of the Act as well as in section 21 of the Act. It will specifically mention that minority-run institutions need not have SMCs. In the RTE Act, SMCs have a big role to play in the running of schools. Half the members of the committee will be women.

e-Courts begin in Delhi High court | iGovernment.in

Dear Friends,

So finally the Delhi High Court has implemented the much awaited E-Courts System which will  pave ways for inclusion of persons with visual impairment as lawyers and judges. Justice Bhatt has taken a lead in presiding the first e-court of India. He is a very learned and sensitive judge and has been behind many pathbreaking, rational and logical judgements on disability.
regards


Subhash Chandra Vashishth, Advocate
09811125521, subhashvashishth@gmail.com


e-Courts begin in Delhi High court iGovernment.in


e-Courts begin in Delhi High court


It was started on an experimental basis in the court of Justice S Ravinder Bhatt

Published on 12/16/2009 - 09:53:32 AM

New Delhi: There were no bulky files on the table, only a sleek wide LCD screen and a touch-screen handbook for the judge as the Delhi High Court on Tuesday launched its first paperless court to bring about speedy justice.

In its first eco-friendly initiative, the e-court was started on an experimental basis in the court of Justice S Ravinder Bhatt.

The proceedings went off smoothly. Within two hours, around 18 cases were disposed off, which on a routine basis take a whole day.

The LCD panel was on the right side of the judge, while he used a touch-screen handbook. The lawyers had laptops to argue their cases. The records of the cases were digitised.

"The necessity of e-Courts has arisen due to the shortcomings of a paper-based system, like storage of documents, maintenance and wastage of a lot of paper," In-Charge of the e-Court committee Justice BD Ahmed said.

Emphasising the need for fast disposal of cases, he said e-Courts will function in a more organised manner and anyone across the world can access the case file.

The committee is also working to make the court proceedings be seen live on the website.

Initially the lawyers faced some hiccups in using the laptop and adjusting to the system. Most of them agreed that it was a good step.

With the help of e-Courts, warrants, court notices and other documents can be sent via e-mail to the party concerned or the post office concerned from where a service slip will be sent back confirming the receipt.

With the introduction of e-Courts, filing of cases will be much easier and lawyers will just have to submit a CD or DVD.

A step further to ensure that Blind Judges can function effectively in the Courts

Dear Friends,

Please refer to my earlier posts on how can a Blind person work as a Judge in which I had proposed that if the petitioner, Counters, Rejoinders, Evidence, Affidavits, judgements/orders and all other documents could be in e-format, the Blind Judges would be a great success. This provides an enabling environment. Though the reasoning being given may not be striving towards an accessible and enabling environment and may be to counter shortcomings of a paper-based system like storage, maintenance and wastage of a lot of paper, it works fine for us. A blessing in disguise. Sustainability requires inclusion of all as well as being eco-friendly.

With this news, I am delighted that what I proposed some time back is surely going to see the light of the day. The good part is that the judge would be able to look at the file and relevant rules/acts on a touch/screen just like a file in the hand. And this makes it so accessible to blind judges.

I am sincerely counting on atleast six-seven blind candidates who are appearing for the forthcoming Delhi Judical Service examination being conducted by Delhi High Court. The preparation are in full swing and I am keeping my fingers crossed.

To read the news from source click on the link below or read the news here itself below the link.

regards

SC Vashishth, Advocate-Disability Rights

To read from Source click here.

Delhi High Court to start e-Courts in Dec

e-Courts will reduce paperwork and filing of cases will be much easier and lawyers will have just to submit a CD or DVD

Published on 11/27/2009 2:01:55 PM

New Delhi: The Delhi High Court plans to start e-Courts that will not only ensure speedy justice for all but reduce paperwork and be eco-friendly, by next month.

"The necessity of e-Courts has arisen due to shortcomings of a paper-based system like storage, maintenance and wastage of a lot of paper," Justice BD Ahmed said.

Justice Ahmad, who is the in-charge of the e-Court committee, said the e-Courts will start functioning from early next month, reports IANS.

Emphasising the need for fast disposal of cases, he said e-Courts will function in a more organised manner and anyone across the world can see the case file.

"We are also working on the project in which live court proceedings would also be seen on the website," Justice Ahmed said, adding that the project will be first started in one court and will soon be started in all other courts, including the five district courts in the capital.

For lawyers and litigants, the e-Courts will be a great help as it would enable them to stop carrying bulky files to the court and just a USB device or the CD of their case.

"Recording of evidence in any case will be done electronically. We are planning to have centres all across the capital from where the person can record his statement and the court can see it via video-conferencing. This will help us in saving a lot of time not only of litigants but also of the court," Justice S Muralidhar, another member of the e-Court committee said.

He noted the new system will also help to put a halt to frequent adjournments by the lawyers.

With the help of e-Courts, warrants, court notices and other documents can be sent via e-mail to the party or the post office concerned from where a service slip will be sent back confirming the receipt.

"We will also ensure that courts shall provide adequate facility to the lawyers while they argue their case using the laptops. Judges will also be given a touch screen handbook which will be like their computer screen and they can read it like a file," Justice Ahmed said.

With the introduction of e-Courts, filing of cases will be much easier and lawyers will have just to submit a CD or DVD.

"We are also planning to introduce a system where court fees can be paid online so that entire work is done at a click of mouse," Justice Ahmed said, noting introduction of e-Courts will enhance transparency, accountability and accessibility for a litigant.

Exclusionary practices continues to be forced upon those who acquired disability due to leprosy

Dear Friends,

I am startled with the news Separate residential unit to be set up for lepers, disabled, hope you too would share my concern.

The systemic apartheid meted out to the disabled especially those who acquired disability due to leprosy in the past continues even today. Its well known fact that with MDT (a new technique to treat leprosy), Leprosy is fully curable but many of our laws continue to stigmatize them and discriminate against without any medical or social basis!

Matrimonial laws still allow divorce on the ground of Leprosy. Leprosy cured are not allowed in the public places, temples etc.

They are not allowed to even contest elections or hold municipal posts in Orisa. The candidate Mr.Dhirendra Pandua had challenged the decision incurring disqualification to hold the post of Councilor and chairperson in Balasore municipality on the ground of him being a leprosy patient. The appeal went to Supreme Court who opined that a leprosy patient cannot contest a civic poll or hold the post of a Councilor or Chairperson of a municipality.

The apex court's verdict in September 2008 upheld the decisions of the Election Tribunal and the Orissa High Court that had upheld the provisions of the Orissa Municipal Act, which disqualify a leprosy patient from holding such posts.

Holding that these provisions are not discriminatory and violative of Article 14 of the Constitution, a Bench comprising Justices C K Thakker and D K Jain said "We do not find any infirmity or illegality in the judgement warranting interference."

The Supreme Court, though agreed that now with aggressive medication a patient may fully be cured of the disease, yet they did not want to take role of legislature and pass any order indicating existence of discrimination. They could have held the law to be against Article 14 but choose to be silent. The wisdom of Judges thought it prudent to leave it to legislature to amend the laws in light of new technology and development in science. Sad part is that Orissa legislature has not risen up to the occassion and the discriminatory law continues!

I can congratulate Maharashtra legislature who have become the first state to repeal the Leper Act of 1898 and currently all Leprosy Affected Persons can participate in election process on an equal basis with others.

However, the news of planning an exclusionary village for the leprosy cured with some visually and physically disabled persons in Maharashtra is something astonishing.

Despite advancement in the medical science and complete control over Leprosy which was considered as "Maharog" once upon a time, there has been no efforts to raise awareness in the society in general and change the laws that openly discriminate against the leprosy cured.

The Govt. of India has put programmes in place for containing the spread of leprosy and results are showing with the increased awareness, however, the recent statement of the Union Health Minister Mr. Gulam Nabi Azad doesn't inspire confidence in citizens for it indicates Govt's failure to reach out to the patients with infected form of leprosy. The data indicates reducing figures but we are yet to reach zero tolerance stage.

But this from no angle justifies continuance of discriminatory laws which are reflections of the mindsets of the society surely repugnant to human rights philosophy and equality that Indian constitution grants to each citizen of India.

Even disability was considered as a bane, a result of karmas and thus the disabled were often shunned out of society with no rights and they were often left to survive on alms. Much water has passed since then. Social model of disability seems to be replacing the Medical model and we are moving towards a rights based model of society.

However, the leprosy cured disabled continues to be discriminated even today. Even within the disability sector, they have been marginalised due to lack of awareness. I was stuck with a question posed by one gentleman with disability!, "why lepers in disabled category?" Ignorance! I said to myself and then went over explaining him, prevails! But should we allow this to continue?

We need larger sensitization and support of medical community to spread the word to shackle the age-old beliefs about leprosy.

I feel leprosy cured have failed to reap the benefits of the Persons with Disabilities Act till date, despite bring included in the definition of Disability well in 1995 itself.

This needs to change and the disability sector needs to intervene to discourage this discrimination. Can we start from ourselves?


--
Warm regards,

Subhash Chandra Vashishth
Advocate-Disability Rights
Mobile: +91 (11) 9811125521

3 Year Health Professional course to ensure Rural Health

Dear Friends,

The Country may have reached the 21st century with all advancements in science and technology but when it comes to rural India which still comprises 70% of India, people are dying because of common ailments which is left untreated due to lack of trained medical professionals or ends up being treated by a quack who have mushroomed in the absence of a trained medical & para-medical profesionals.

We were hearing an appeal from the PM and the President calling upon the doctors to compulsorily serve in rural India at least for 2 years in the begining of their practice. But in India such appeals do not seem to work with every one looking to generate mullas as early as possible. Many want to fly off to other developed countries and those who remain move to big cities/towns to develop their business.

The Govt. machinery is woefully pathetic when it comes to PHCs etc. Doctors posted there do not report there. The PIL filed by Advocate Prashant Bhushan has some answers for such a situation. He suggest reducing the duration of MBBS course from 5 years to 3 years or atleast create another course which makes a trained doctor eligible to practice in rural areas. His reason is simple. You don't need to be armed with high professional qualification to give basic health services in rural areas. China practices such a system to ensure right to health in far flung areas.

It can surely be done in India. If accepted by Min. of Health, the problem of quacks can be tackled for sure while the health will reach the door of the rural masses. This solution has caught the eye of the Delhi High Court Judges who have issued notices on the petition to the Govt. of India (Min. of Health) to file a reply and study feasibility of the same.

Looking forward to the response of the Govt and how this PIL culminates in to some pathbreaking initiative through court intervention!
regards

Subhash Chandra Vashishth, Advocate


For detailed news from source click here:


Delhi HC suggests a 3-year MBBS course
It asked the government to consider changing the MBBS curriculum so that basic health facilities can be reached to the rural population

Published on 11/19/2009 3:39:28 PM


New Delhi: Taking serious note of the fact that basic health facilities were not reaching the poor in rural areas, the Delhi High Court has asked the Health Ministry to consider whether the present course can be reduced from five years to three years.

A division bench comprising of Chief Justice Ajit Prakash Shah and Justice S Muralidhar asked the Health Ministry and the Medical Council of India (MCI) to consider changing the MBBS curriculum so that basic health facilities can be reached to the rural population.

"This is a very important issue. Almost 80 per cent of the rural population is devoid of the basic public health and this fact should be considered seriously," the court said while asking the Ministry to file its response by December 9, the next date of hearing, reports IANS.

Asking the government to amend the present educational standards the court said, "You have to change the over-five years' MBBS course so that doctors who get trained don't fly to other countries or stick to the metro cities in the wake of good earning. Educational system should be changed to three years so that every doctor can cater to rural population."

The court was hearing a public interest petition filed by a public health specialist, Meenakshi Gautham, who contended that a person who completes his MBBS can practice modern medicine as soon as the course is completed.

These graduates, the petition said, either rush to big cities or go abroad, and therefore a large majority of people are not able to get proper medical treatment, and are forced to depend either on untrained and uncertified rural medical practitioners, or on quacks.

"The irony is that 80 per cent of the common medical problems and ailments can be treated at the level of primary health care and do not require attention of a professional trained in highly academic, sophisticated, five-and a half-year long course like MBBS," advocate Prashant Bhushan said, and suggested the Ministry should follow the educational model adopted by China.

Want to become Judge? An ideal opportunity for VH law graduates in Delhi

Dear friends,

The Delhi High Court will hold Delhi Judicial Service Examination to fill at least 60 posts of Lower Judiciary in Delhi soon. I have been constantly calling upon the Visually Impaired Candidates to come forward in large number and appear for this august examination to make at least some beginning. Why I say so is because, there are five posts reserved for the Candidates with Low Vision/Blind and out of these only one has been advertised for first time, the remaining four vacancies are carried forward vacancies. You will be amazed to know that one carried forward vacancy has been advertised for fifth time, 01 for third time and 02 for second time!!

This indicates that either the information is not reaching out to the blind candidates or they are not keen on it or they are not geared up/prepared for it or there are no eligible VH candidates available!! I am sure the latter one is not true for the data of students passing out from Law Colleges indicates a good number of VH students passing out successfully. Then where they are going? I am writing it here so that I am able to circulate this information to the largest network possible and assist them in preparation for the same.

I have been told by many prospective candidates that they need some training and coaching for this which is not available in their near vicinity. The Govt. or the Delhi High Court has not made any such arrangement so far to make some special efforts to fill these vacancies by way of counselling, coaching and training. A few professional institutes that exists are not geared up to handle the needs of the VH. Non-availability of study material in alternate formats and modern technology/gadgets are other stumbling blocks.

I had written an article some time back on what all it takes for a blind to become a Judge or hold a position in Judiciary here on this blog and I received many positive comments that it was not only able to sensitize many outsiders but also insiders of the Disability Sector and particular the Visually Impaired brethren. And they promised that they would surely be looking forward to the next advertisement for the recruitment.

How to apply for Delhi Judicial Service Examination 2010?

(a) Qualifications and Age: , Indian Citizen, Law Graduate from recognised university, practicing as an advocate or qualified for enrolment as an Advocate under Advocates Act, Not more than 30 years of age as on 01 January 2011. (Age relaxation applicable for SC/ST/Ex-servicemen/ Disabled as per rules) (Though advertisement doesn't say about age relaxation to disabled but it can be presumed in light of DOPT memorandum dated 29.12.2005 regarding the same (Click for Hindi version of memo)

(b) Now if you qualify in the above criteria, go and fetch the Application Form and DJS Registration form both by paying Rs. 100 (for Disabled, SC/ST) and Rs. 600/ (for General Candidates) on any working day between 03.11.2009 - 30.11.2009 (10.30 AM to 01.00 PM and 02 PM to 4 PM) from Filing Counter of Delhi High Court. Those who can't go, can ask for it by post also (refer to detailed advertisement)

(c) Important Dates : Submit the filled application in person (By hand) at Filing Counter till 4 PM on 01.12.2009 or by Registered Post Ack Due so as to reach not later than 4 PM on 01.12.2009.

For further details refer to detailed advertisement

Hoping to see many Blind/ Low Vision candidates competing and getting appointed this time!

regards

Subhash Chandra Vashishth

Advocate, Disability Rights

09811125521

Another case of Misuse of benefits meant for Disabled

Dear friends,

Equalising opportunities provided by way of positive discrimination by the Govt. to its employees with disabilities can often be misused, by vested interests. Therefore proper mapping of people with disabilities is all the more important. This is height of carelessness of the BSA that 24 transfers were made on the basis of fake certificates without even verifying as to how suddenly so many teachers became disabled! It wouldn't have come to the notice had suddenly so many applications were made on the common ground of disability to stop their transfers.

Even for the employees with disabilities, the rules are very clear that they can be transferred close to their native places among various institutions. No one can claim to continue at single school through out.

We learnt about similar case in Bihar last year or so. This indicates for some tough mechanism of verifications and harsher punishments in case of misuse by the State. All these teachers should not only be prosecuted under the provisions of Indian Penal Code but also under the provisions of Persons with Disabilities Act-1995 and be suspended with immediate effect. The vigilance department should reach the root of this malaise as to who coordinated such mass practice. There must be someone within the department advising teachers to adopt this measure!

To sum up, need to have a database of PWDs district wise on the line of Himachal Pradesh and Chandigarh is all the more important. Also organisations working for transparency, disability should use RTI and ensure social audit that such misuse is checked in the bud. A strict action in this case can send alarming signals to future criminals!

regards

SC Vashishth, Advocate-Disability Rights

09811125521

To read from Source Click here: Indian Express

‘Disability’ enables teachers to tweak transfers in Pratapgarh

08 October 2009

Physical disability, often regarded as a curse, is coming handy for hundreds of government teachers in Pratapgarh, who are using it as a pretext to seek transfers.

Of the 469 assistant teachers who received promotion this July, 130 have sought transfers, producing fake certificates of disabilities. Or like Girish Chandra, a teacher at Antpur primary school at Mandhata, they produce fake disability certificates to cancel transfers.

Chandra submitted his application to the office of Basic Shiksha Adhikari (BSA). Chandra is not handicapped, said the BSA office, which had ordered an inquiry after some teachers made a written representation to check the malpractice.

Another teacher, Indrasen Singh, got posting at his village Pure Chauhan from Rainia on this ground. He has even joined duty. Yet another teacher, Rama Shukla, sought transfer with a fake certificate. “The teachers had not produced any such certificate at the time of getting the government job,” said a teacher.

“They did not fill up the column of physical handicap. Suddenly, in contrast to the known 25 disabled teachers, 130 applications have been submitted in the office of the BSA seeking transfers.” These teachers have produced fake certificates because they want to stay near their villages, he added.

The BSA office woke up to the practice after approving 24 such transfers and the Basic Shikhsa Adhikary was charged with accepting bribes.

Denying the allegations, BSA Ashok Nath Tiwari said: “I have sent all such certificates to the Chief Medical Officer for verification. Now transfers will be done only after getting the verification. I will cancel the transfer done so far by me.” He added that legal action will be taken against teachers found guilty.

The CMO, Pratapgarh, Dr Madan Mohan, said he has not received any letter from the BSA, but if the BSA requested him, his office will do the verification. “A racket is being run at the office of BSA and CMO,” said Prabhakar Dwivedi, a teacher. “The CMO office issues fake certificates and the BSA office effects the transfers without verification. We will approach the district magistrate for an impartial inquiry,” he added.

On July 30, the government had promoted 496 assistant teachers in Pratapgarh district. As per government policy, transfer is mandatory with promotion. But despite accepting promotions, some teachers teaching at primary schools in their villages, were reluctant to join their new postings. A few wanted to get postings as per their wishes. But when the district administration mounted pressure on them to join their new postings, they submitted fake disability certificates and sought transfers.

The Right to Education Act 2009 set to be amended

Dear Friends,

There have been several voices against the RTE Bill which fail to die down- thanks to the ever vibrant disability sector. On 19th of September 2009, another Disability Rights Activists from across 15 Indian States assembled under the banner of Viklang Manch facilitated by Human Rights Law Network at Jantar Mantar, New Delhi. Before that the Manch had convened a two Day workshop on the issue which were inaugurated by none less than Chairperson- National Trust, Chairman-Rehabilitation Council of India and the Deputy Chief Commissioner -Disabilities besides Mr. Collin Gonsalves, Advocate.

The activists were angry and the unrest has grown over a period of time because of failure of the bureaucracy in treating the disabled with dignity and respect besides Govt. of India's failure to implement a major enabling legislation called the Persons with Disabilities Act.

The activists handed over memorandum to the PMO. To visit various pictures of the agitation at Jantar Mantar click here.

The agitation was a final nail in the series of agitations earlier organised by AARTH-ASTHA , AADI, NCPEDP and other organisations in the sector. The very next day on 21st September, 2009 Mr. Sibal indicated that Govt. was seriously considering amending the RTE Act to include the concerns of the disability sector.

Now when the Govt. is seriously considering amendments in RTE Act, the Sector should reach out with one voice through a larger consultation so that no one is left out. The pursuit should be to address not only the Act but also suggest what ought to be there in the sub-rules of the Act so that the provisions that are included are implementable.

Here is a recent news which to me is no where indicative of its subject, though it spells out again the seriousness that the Ministry of Education is showing now.

regards

SC Vashishth

09811125521

Disabled children not to be in 'disadvantaged' class

5 Oct 2009, 0411 hrs IST, Urmi A Goswami, ET Bureau

Click here to read from Source

NEW DELHI: The Manmohan Singh government plans to amend the Right of Children to Free and Compulsory Education Act, 2009 to broaden the ambit of “disadvantaged” children to include children with disabilities. It would like to introduce the amendments in the winter session of Parliament.

The ministry of human resource development (HRD) will be seeking Cabinet approval shortly for the changes. This move would allow differently-abled children from economically weaker and disadvantaged sections to take advantage of the 25% seats set aside in private unaided school under Clause 12 of the Act. This had been a key demand of disability activists when they met HRD minister Kapil Sibal. The ministry also plans to introduce changes in Clause 3 of the Act to extend the right to free and compulsory education to children suffering from disabilities as defined in the National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999.

This Act deals with severe mental retardation and goes beyond the scope of the Disabilities Act. At present, the Right of Children to Free and Compulsory Education Act is applicable to differently-abled children covered by the Disabilities Act.

This move by the ministry of human resource development is in response to the protests by disability activists in August, just ahead of the legislation being taken up for discussion in the Lok Sabha. At the time, the ministry had suggested that it could amend the Act after due consultation with those who work and research on issues relating to the education of children suffering from severe mental disabilities.

The ministry had also considered a higher outlay for home-based education, which many children with severe disabilities require. This effort to draw in larger number of children with disability also comes on the back of data gathered by a survey conducted by the IMRB.

The survey found that 34.12% of children with disability were out of school. The national average for children in the age group of 6 to 13 years is 4.22%. This figure is lower than the situation in 2005 when IMRB found the percentage of children out of school at 38.13. The highest concentration of out of school children is among those with visual disabilities (46%) and multiple disabilities (58.57%).

Dear Friends,

Our archaic laws still exists while new ones keep coming but there is hardly an attempt to scrap or amend the old laws. This often leads to situations like this. In the instant case while a family wanted to adopt a girl child under the new child friendly legislation called Juvenile Justice (Care and Protection of Children) Act of 2000 but they couldn't because the archaic law on adoption named Hindu Adoption and Maintenance Act came in the way.

The family had to approach the court to get the matter settled but why can't such exercise be carried out while notifying the new law that no relevant existing law is in contradiction of the law, so that a process to amend /scrap the old law could be taken then and there. Well, in the instant case, the Hon'ble Supreme court finally held that the New law will override the old provisions of Hindu Adoption and Maintenance Act.

Also it is all the more important to do this in view of the paradigm shift that we see in the status of SC/ST, gays, HIV patients, the women, the disabled, the elderly and those who were not in the mainstream till now, with the introduction of new laws, signing of new international treaties, landmark judgements from the Supreme Court of India etc.

In fact, a detailed exercise is needed by the Union Ministry of Law and also by the Law Ministries in various Indian States to ensure that no existing laws/rules/practices/norms etc are in contradiction the new socio-economic and legal order based on equal rights and non-discrimination.

regards

SC Vashishth, Advocate

To read from source click here

MUMBAI: Hindus who have always wanted to adopt a girl even though they already have a daughter can now do just that. The Hindu adoption law prohibits same gender adoptions but, in a landmark judgment this week, the Bombay High Court has thrown open the legal doors to allow Hindus adopt a child of the same gender as their existing one.

In the verdict, the HC allowed a recent petition by Mumbai-based actor couple (names withheld on request) to be legally declared as adoptive parents of a girl they had taken in as their ward over four years ago under the Juvenile Justice Act.

The couple had a two-year-old biological daughter of their own when they sought and were allowed by the court in 2005 to become guardians of a year-old destitute baby girl. Stating that courts must harmonise personal laws with secular legislation, Justice D Y Chandrachud held the Juvenile Justice (Care and Protection of Children) Act of 2000 — a secular law enabling rehabilitation of abandoned children through adoption — would prevail over the Hindu Adoption and Maintenance Act (Hama), a personal law that has placed certain restrictions on adoption.

Justice Chandrachud took up the Pathaks’ issue seriously as it “involved the larger issue of encouraging adoption and giving an abandoned child a chance in life’’. He looked closely at adoption laws under their various avtars and at the Indian Constitution as well as the Convention on the Rights of the Child which India had ratified in 1992 before ruling that “adoption is a facet of right to life and that freedom and dignity are the foremost values of governance in civil society and freedom and dignity of the young must count above all’’.

This was the first time the court was interpreting provisions of two conflicting legal provisions on adoption; it had a 54-year-old Hindu Adoption Act and the more progressive nine-year-old Juvenile Justice Act, which introduced adoption of abandoned children and gave it a wider platform. The Hindu law places stringent conditions and prohibits adoption of a child of the same gender where an adoptive father or mother already have a child living at that time.

For instance, if the adoption is of a daughter the adoptive parent must not have a Hindu daughter or a son’s daughter living at the time of adoption. Conditions are stricter while adopting a son and adoptive parents must not have a Hindu son, a grandson or even a great-grandson alive.

The Juvenile Justice Act, a countrywide beneficial social law, came in 2000 and introduced a ‘child-friendly’ approach towards adoption “in the interest of ultimate rehabilitation of a narrow sub-class of children who are orphaned, abandoned or surrendered’’.

The HC, after hearing advocate Vishal Kanade for Pathak, held: “Right to life includes rights of parents and of individuals, women and men, who wish to adopt to give meaning to their lives on the one hand and, on the other hand, is the right of abandoned children who are in need of special care and protection."

We need watch dogs and tab keepers to keep the disabilty movement vibrant

Dear Friends,

I appreciate such vigilant players in the disability sector. Such advocacy gives strength to the overall vibrancy of the Indian disability sector. We need to keep tab on various promises, laws and rules. Often, it is forgotten as new pressing issues overwhelm us. That is why the importance of such tab keepers.

If this fund is directed to the sector, we can have as many special schools, inclusive schools and accessibility around us besides vocational training and employment opportunities for Indians with disabilities. I know how many genuine organisations are not able to provide services due to resource crunch and delay in Govt. funding. The grants do not reach them even after the passage of the year for which they were required. The rampant corruption in providing support and grants. Each time, the authorities hide behind the excuses of their limited economic capacities when it comes to ensuring accessibility in infrastructure and providing support services.

The banks should be penalised for these lapses and made to pay interest at market rate for amassing the money for so long.

Also, we can't expect the CAG to be wise enough to know the needs and intricacies of the issues involved in the Disability Sector. Therefore, I would suggest that with CAG as its head, we could have membership from the disability sector to suggest and plan on how to spend the amount bring cheers in the lives of those experiencing disabilities and their families.

In addition to MSJE's funding, this money could be utilised for the special projects like vocational training, improving employement facilities, creating barrier free environment and more particularly towards the social security systems for those with no help from any corner. The constitution of such a board will also reduce the bureacratic hurdles that we often see in other departments especially in ministries like MSJE and the likes.

Congratulations Collin, once again!

Here is the news:
Banks pocketing funds meant for disabled
TNN 5 September 2009, 02:41 am IST

NEW DELHI: Banks and financial institutions have been pocketing an estimated Rs 724 crore annually by rounding up interest tax collections since 1993 despite a Supreme Court directive in 2004 that this money be used for creating a fund for implementation of the Disabilities Act to benefit disabled persons.

"Though a Trust headed by the Comptroller and Auditor General (CAG) was set up, it appears that apart from starting a scholarship scheme for disabled students envisaging a maximum expenditure of Rs 1 crore per year from August 2008, nothing further seems to have been done," alleged a PIL in the Supreme Court on Friday.

Appearing for the petitioner, senior advocate Colin Gonsalves told a Bench comprising Chief Justice K G Balakrishnan and Justices P Sathasivam and B S Chauhan that the total sum due from the banks was now to the tune of Rs 10,000 crore and if it was given, implementation of the Disabilities Act would not require state funding at all. He showed the 2004 judgment of the apex court on this issue. This made the Bench issue notice to the Centre. In 2004, the SC had directed: "Despite the progressive stance of the court and the initiatives taken by the government, the implementation of the Disabilities Act is far from being satisfactory. The disabled are victims of discrimination in spite of beneficial provisions of the Act."

"We are therefore of the opinion that in the larger interest a fund for the aforementioned purpose be created with the amount at the hands of the Union of India and the appellants and other concerned banks, which may be managed by the CAG," it had said. "We would request the CAG to effect recoveries of all the excess amount realised by the Union of India by way of interest tax and interest by the banks and other financial institutions and create the corpus of such fund therefrom.

The appellants and other concerned banks are also hereby directed to contribute to the extent of Rs 50 lakh each in the said fund," the SC had said in its 2004 judgment. Gonsalves said as against Rs 5,000-10,000 crore which ought to have been collected, the amount collected is approximately Rs 150 crore of which Rs 1 crore has been earmarked for a scholarship scheme for disabled students.

Click here to read from the Source: The Times of India

Harmonizing Disability Act with UNCRPD

'Disability Act should conform to UN model'
Ashish Sinha
New Delhi, September 8, 2009

Click here to read from source: India Today

On a day Taare Zameen Par won the national award for being the 'best family welfare entertainment film', Prime Minister Manmohan Singh authenticated the need for an attitudinal shift towards persons with disabilities.At a conference of state welfare ministers, Singh said India lagged in adopting the correct - human rights - approach on the subject. He said the Persons with Disabilities (PWD) Act, 1995 would be "comprehensively" amended to conform to the UN Convention on the Rights of Persons with Disabilities (UNCRPD), enforced in May 2008. India is a UNCRPD signatory.

"I found in each one of them (persons with disabilities) a determination to live productive lives and make their individual contributions to society. We should give them every possible opportunity to do so. They need equal opportunities as equal citizens with special needs," he said.The UN convention redefines the old approach of viewing persons with disabilities as "objects" of charity, medical treatment and social protection.

The PWD Act, to a large extent, suffers from the same shortcoming with the state becoming the 'provider' - sometimes the 'facilitator' - for persons with disabilities. Experts said other legislations on the subject also suffer from the old mindset and rather than "comprehensive amendments", a new set of laws was necessary.The UN convention sees people with disabilities as "subjects" with rights, capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.

"The PWD Act lists seven disabilities - blindness, low vision, leprosy- cured, hearing impairment, locomotor disability, mental retardation and mental illness. The UN convention doesn't restrict the definition. It talks of higher support need as a matter of right," said Poonam Natarajan, chairperson of the National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities.

"A person is not disabled; it is the environment that makes him so. Their legal capacity must be redefined.They should have full control over decision-making and choices," she said. The Prime Minister described persons with disabilities as those having "evolving capacities". After enforcement of the UN convention, the focus shifted to providing equal opportunities to persons with disabilities so that their potential could be harnessed.

"The medico-charity model needs to be dumped. Disability, simply, is diversity. It means the right to live with dignity and equal opportunities. The mindset of the administrative machinery, however, is no different from most of society where stigma is associated with disability," said a senior IAS officer working in the sector.

Last year, the government had announced an incentive scheme to promote employment of persons with disabilities in the private sector. The Prime Minister pointed out the scheme hadn't made much headway. " This may partly have been because of the economic slowdown. But as our economy is now emerging from its slowdown phase, I urge the corporate sector to respond handsomely in the implementation of the scheme," he said.
Courtesy: Mail Today

Are we preparing CAs or White Collar Criminals in the name of CA education from ICAI?

Dear Friends,

The Satyam scam, remained in news for a pretty long time. Govt. of India immediately swung in to action and fingers were pointed out at Auditors and they were to face legal action. A board was constituted to ensure that the organisation doesn't go bankrupt as it would have given a jolt to the Indian Companies abroad where lot of money was invested in these and similar organisations. So positive news followed, good returns were shown and every thing has been brought to order. Story forgotten, No lessons learnt by Govt. of India!

But I think the CAs and the companies must have learnt some lessons so that they become more careful in future and devise more foolproof ways that they never get caught! If still they fail, we might have another such scandal soon sometimes later!

This is precisely because our government believes in adhoc arrangements and firefighting and do not want to get in to the correction mode. Now whether it is because, it serves the purposes of those in Govt. or those vested interest who are an inherent part of government through their affiliation to the powers those be, But the fact is that no efforts have been made by any authority to get deep in to this malady of "Forging Accounts".

“FINANCE” is the back-bone of economy of this world. Also, “FINANCE” is intricate for most people and very few persons can understand it, what to think of controlling it.“FINANCE” is a subject which affects each one of us, in fact every sector, section and people of this great country.
So, A Student Entering into CA Curriculum also dreams of bringing awareness about “FINANCE” and it’s “Management and Control” among people of India, among the corporate in which he dreams to get employed and thereby contributing to the progress of India. BUT the reality is perhaps not this!

During my recent advocacy work, I came across a student of CA(Final) Mr. Chirag Sawant who was trying to expose this malady and I was indeed amazed as to how deep rooted this issue was. Perhaps it is the only professional course that has no full time classes and yet the whole financial sector is managed by such professionals. In the name of training, the CA(under training) are attached to CA Firms who treat the students like bonded labour for the time they are under them. Slavery, drudgery and what not follows!

On my further inquiries and research, I realised, most CA students had similar story to tell and they suffered in silence! And what they learnt in these firms is not how to make and keep financial records but how to serve the interest of their masters/employers by fudging the accounts books, making wrong entries and records to show something that doesn't exists - with the sole purpose to benefit those for whom they work- of course a criminal act.

Ordinarily any employee would do that for his master and to save his job. But when it comes to Professionals in the area of finance, the gravity of such actions /inactions become very serious!

Professionals are governed by Ethics, but here it seems they are trained to be unethical right in their formative years.

On my further inquiry, I learnt form the CA students that typically, as soon as any student is enrolled into Article-ship under any practicing CA i.e. the member of The ICAI, the student is sent for auditing the books to the place of clients of that CA. Here, he learns to check arithmetical errors and vouching the books. Gradually he is taught by the member of The ICAI to guide their clients to make entries in the proper Accounting Head in their books.

This is where, the process of criminal education starts!. As the time passes, he is trained to make Fake Balance Sheets, Fake Vouchers, Fake Entries Etc. many time against his wish and will - just for the sake of his education. At the end of 5 Long Years of Article-ship (including Extended Period Leave by the student), the good and innocent brain is washed completely and A Sophisticated White Collar Criminal is Produced under the name of Education !

This is how we are leading to scams like Satyam and I hope all of you will agree that there are many more Satyams existing but have not been unearthed! If Government of India is really serious about this malady, this has to be nipped in the bud. Else any amount of rules, regulations and laws will not work. The system of education of ICAI needs to be investigated, regulated, and supervised as the first step and how urgent it is can be gauged by the impact that Satyam scam brought on Indian Economy.

And ICAI on its part should check its own system of education rather than forming committees one after the other to prepare reports on the conduct of S Gopalakrishnan and Talluri Srinivas - the Auditors of Price Waterhouse. ICAI has to address issues of failure of adherence to accounting practices, corporate governance, role of independent directors etc right in their training modules and the unethical way the CAs are being trained.

regards

SC Vashishth, Advocate

PS: I am thankful to Mr. Chirag Sawant and many other CA students who shared their personal experiences, plight and brought this malady to my information.

ICAI to dig deeper in to Satyam, Buysiness Standard, 29 Aug 09

Click here to read from source

BS Reporter / Hyderabad August 30, 2009, 0:31 IST

The Institute of Chartered Accountants of India (ICAI), the regulatory body for chartered accountants in the country, is now making a second and final report on the role of the auditors in the massive accounting fraud at Satyam Computer Services, now called Mahindra Satyam.

This is the second investigation by ICAI. It had submitted the first report along with its recommendations to the ministry of corporate affairs last month. The second report is expected to go deeper into the matter and look at all new facts that may have come up.

Speaking to the media here on Saturday, ICAI President Uttam Prakash Agarwal said that a high-powered disciplinary committee will shortly visit Hyderabad to study issues related to failure of adherence to accounting practices, corporate governance, role of independent directors and other stakeholders in the Satyam case.

He declined a give a deadline within which the investigation will be completed but indicated it could be February next year when his term as the president will end. The report from the committee will once again be submitted to the ministry for further action against the auditors.

The ICAI president declined to say what kind of action it will recommend to the chartered accountants who audited the Satyam accounts if proven guilty. The Satyam auditors were S Gopalakrishnan and Talluri Srinivas of Price Waterhouse.

Agarwal said that Gopalakrishnan was stripped of all non-standing committee posts two weeks ago. However, he will continue to serve as a member as it was not in the jurisdiction of the ICAI president to remove members from their posts, he added.

ICAI, in the wake of the Satyam fraud, had asked all its members to look for external evidence before certifying the accounting statements to ensure that similar incidents do not recur.

 

Another State-level workshop on Disability Evaluation and Certification

Dear Friends,

The Government seem to be taking this exercise in all the corners of India to see that Disability Evaluation and Certification is done as per set norms. However, the process is still tedious for many and as per estimates presented by Union Minister for State of Social Justice & Empowerment, Govt. of India, only 22% persons with disabilities counted in 2001 census have been given the Disability Certificates. One could easily imagine and about the status of remaining 78% when all Govt. schemes, benefits are only given to those who have a valid Disability Certificate!

In this light, the whole process of certification at times seems unending in a gigantic country like India, unless the Government consciously decides to make an earnest effort to issue Smart Card based multi-purpose Disability Certificates to all so that multi-certificates for various reasons could be avoided. I remember when on 25 September 2007, a National Consultation Meeting to simplify the procedure of Issuing Disability Certificate was organised by Svayam in association with Aarth-Astha at New Delhi which had major recommendation that I feel are still to be implemented!

The need of the hour is to take this issue as a national challenge to map all citizens and children with Disabilities and issue them this crucial document within a time bound programme.
regards

Subhash Chandra Vashishth


Click on link below to read from source:
Doctors urged to follow norms while issuing disability certificates

Health official says doctors will have to follow uniform guidelines specified by the Central government to evaluate and certify the cause of disability.

Doctors will have to follow uniform guidelines specified by the Central government to evaluate and certify the cause of disability, said Principal Secretary, Health, V.K.Subburaj.

Addressing medical professionals, who are also members of the various Medical Boards in the district, Mr. Subburaj said doctors have to take the task of issuing disability certificates seriously. Apart from responsibility and commitment, they also had to have a rounded picture of multiple disabilities while issuing the certificates.

He was speaking at the inaugural of a State-level workshop on Disability Evaluation and Certification organised here by the National Institute for Empowerment of Persons with Multiple Disabilities (NIEPMD).

NIEMPD Director Neeradha Chandramohan said currently certification was being done only for uni-disability or a single disability. The training programme was organised to orient doctors on multiple disability certification. A disability of 40 per cent or more was caused by blindness, low vision, hearing impairment, mental retardation, mental illness, locomotor disability, leprosy (cured), Cerebral Palsy and Autism. Multiple disabilities indicate a condition in which the disability is caused by two or more of the above causes, she added.

The objective of the workshop was not only to disseminate information to doctors regarding the guidelines, but also to clarify their doubts regarding the current evaluation process. The issue of simplifying the process was also taken up at the meeting, as the medical boards met only once a week to give certificates. It was mentioned that this was insufficient to cover a substantial portion of the disabled population.

The recommendations from the meeting would be sent to the Government of India through the State government, Dr. Chandramohan added. The workshop was conducted by the NIEPMD with the National Institute for the Orthopaedically Handicapped, Kolkata, and the Ministry of Social Justice and Empowerment.

A petition for mercy dealth for 4 disabled sons brings some support from Ac

Dear Friends,

A very meaningful discussion that happened on this news item "Parents want mercy killing for 4 disabled sons" has finally brought much needed support from the IAMD, thanks to Sanjana Goyal and her friends. I totally agree that there should be a national data base not only of those with muscular dystrophy but all those who are citizens of this country and in particular those with disabilities and in difficult circumstances.

The government may have ample of money and resources, but unless the data base exists its is difficult to plant any intervention and support. Similarly many NGOs and kind hearted citizens want to reach out but it is so difficult to help in absence of systems. Also how many cases can media pick up?

I am happy that on this count Mr. Nandan Nilekani has begun his work on his Unique ID Card Number system which will give identification to each Indian. This would be a boon to those with disabilities as proper mapping, planning will be feasible once this comes through. However this doesn't stop NGOs in the field to continue gathering data on their relevant areas which can further supplement the efforts of the Govt.

Financial help in this case could have brought some relief but ultimate need was to counsel the family, extend a quality of life and arrest the further degeneration as far as possible in the little kids by way of physiotherapy, simple lung exercises like filling air in balloon, blowing candles and the likes. And yes, a balanced diet is of much importance here for the young children.

Appended below is the news followed by comments that followed as part of discussions for the ready reference of readers. Hope the civil society continues its vibrancy this way and reaches out to those in need But somewhere Govt. also needs to be accountable in this process as I don't see even a single response from those who are Govt. offices in Disability Sector like CCPD, MSJE and others who remained passive recipients of the whole discussion.

Regards

SC Vashishth, Advocate -Disability Rights

Clik here To read from source

Parents want mercy killing for 4 disabled sons

IANS 11 August 2009, 01:42 pm IST

LUCKNOW: A farmer and his wife in Uttar Pradesh have sought President Pratibha Patil's permission for the mercy killing of all their four sons whohave turned into virtual vegetables. The four, aged 10 to 16 years, have been afflicted by muscular dystrophy, a genetic disease that has confined them to bed.

"My sons cannot stand on their feet. They are unable to move their body below the neck. I see their distress every day. Now when doctors too have lost hope, I want they should die. Death would be the ultimate solution for their suffering," farmer Jeet Narayan of Bashi village of Mirzapur district, some 300 km from Lucknow, has said in his letter to Patil.

"My sons are in utter discomfort. I cannot see their helplessness any more. So, we have written to the president that our sons be killed through euthanasia," Narayan's wife Prabhavati said over telephone.

Narayan has told his neighbours that he has sold of all his valuables to meet the medical expenses of his sons."Our financial resources have been exhausted. I even sold off the parental land. Moreover, I owe nearly Rs 2 lakh to moneylenders," he said.

Prabhavati said muscular dystrophy afflicted her sons when they were five years old. She identified them as Durgesh, 16, Sarvesh, 14, Brijesh, 11, and Suresh, 10. All four were normal children until then.
The couple now fears their four-year-old daughter may become disabled when she turns five. "Till now our daughter is doing fine but we are quite worried about her. She might meet the same fate like her brothers after a year or so," said Prabhavati.

Comments

Shri Subramani L (lsubramani@deccanherald.co.in)

At least they have a responsibility to explain to them what they are planning to do. I am sure there would be ways of making them live a better life, but if the parents feel defeated then there is little or no choice, unless perhaps someone personally willing to bankroll theirrebah or treatment.

Vamshi G (gvamshiai@gmail.com )

I don't support Euthanisia at any stage. We know many cases wheremore than one child in the family is disabled and still they becomeachievers, for which there is more than one example on our listitself. We have even seen persons with multiple disabilities achievegreat heights of success. So, they should carry on their lives with apositive attitude awaiting for some miracle to happen, which is easiersaid than done.

I personally interpret the factors which would have prompted theparents to take such a decission in a different way. -- consideringthe attitude of the Indian governments towards the disabled persons inour country, the parents would have been frightened about the lives oftheir children in a country like ours.
As far as the president's decission is concerned, I feel she shouldthrow the decission about Euthanasia out of the window and think inlines of what the government should do for a family like this,assuring good medical facilities, education and financial assistancefor any productive purpose the family undertakes for it's survival.The steps taken should be in such a manner that no disabled person inIndia should ever even think in lines of Euthanasia again.
I know most of you would burst into laughter reading my suggestions asto what our caring and concerned governments should do for thisfamily. They are so busy taking care of the members who support themto sustain power till the nest elections.
To quote a small example, the H R A of the members of Andhra Pradeshassembly has been raised by just 200% recently and the additionalconveyance allowance paid to disabled bankers is a mighty sum of 400per month.Oh god! how much tax should I have to pay this year as a result ofthis conveyance allowance?

Geetha Shamanna (geetha@millernorbert.de)

Hi Vamshi,
Muscular distrophy is not just a disability, it is a terminal anddegenerative condition which gradually deteriorates until the patientfinally dies. People with this condition suffer a great deal as it worsens.It can in no way be compared with blindness, deafness or other suchdisabilities. While considering euthenasia in case of normal disabilitiesshould be categorized as outright criminal, terminally ill patients shouldbe given the right to decide about their own lives and should be allowed todie if they wish to. Suffering through such conditions is pointless if thereis no hope in sight.

SC Vashishth, Advocate-Disability Rights (subhashvashishth@gmail.com )

Dear Friends,

We all know MD is a degenerative condition and gradually the muscle fibres gets replaced by fatty tissues with no muscular strength left. Its starts from limbs and gradually moves on the central body organs. The mental faculties remain intact in MD has not been related to mental retardation etc. Its only a genetic conditions and often girls are silent carriers of the condition and boys get affected more.However, with regular exercise and balanced diet life span increases and with support systems it can be sustained for many years. We have live examples like Mr. Sanjeev Sachdeva who is a person with MD and has been serving as Class I gazetted officer in Indian Parliament. I have seen him for past several years, his zeal to social work and community support has further enhanced and strengthened despite the degenerative condition. He is currently the director, Sanjeevani - an NGO and working for national trust in running "Sahyogi Scheme of national Trust." There is also a Muscular Dystrophy Association in India.

I feel that Govt. should provide support structures to this family and may be either support the family with requisite supplements or alternatively with consent of parents and the children have these children in the state run institution if the parents are unable to look after and meet their needs. There is a larger need of social security for such children with disabilities and all persons with disabilities in distress and in need of support. Its ignorance and lack of support that parents are seeking mercy death. No parent would like to see his/her child be killed, even if the child is disabled. Its only apathy of society, Govt. and lack of support system that people are forced to think that way. Also should what right we have to take away a life if we can't give a life to some one. The incidence is an open slap to the social justice department of the state who have consistently ignored this family.

Deepak Singla (deepakkumarsingla@gmail.com)

Dear friends

As someone said there are people who r suffering from these problemsare still hopeful and living with full zeal, there is no doubt in thatfact. I am a visually handicapped and one of my brothers is alsovisually handicapped. In my family, i.e. maternal side, there are manymembers who r suffering from MD. It is difficult to live with such aproblem but they are still giving tough fight to the challenges. Iwould like to say on this topic that our Hon'ble President should givea kind consideration to the request of the parents and should extendhelp from the Government side so that the children could get properhealthcare facilities along with education.

Sanjeev Sachdeva (sanjeevsach@hotmail.com ), Director -Sanjeevani

Dear All,

I have been thinking since morning how to react and respond. Subhash thanks for your kind words about me. Unfortunately or fortunately i am one of the very few again very few privileged persons with economic independence but some issues boggle my mind. This kind of mercy killing request by parents having children with Duchenne MD is not new to me. In the past 3-4 years many such instances have come up. People like me and all well wishers should accept some sort of responsibility. We have not done anything concrete except lip sympathy. These instances "awaken our souls while someone somewhere silently suffers and awaits death" No one invites Disability, No one would prefer to be born with or afficlited with any ailment or disease at any point of time. Infact we as Persons with Disabilities we accept whatever has come in our life. It is the family- mainly parents who suffer the most awaiting miracle to happen. No monetary support or compensation can suffice for the pain, trauma and uncertainity about their children or adult, after their death. Live Role Models with MD like Anjali, Sanjana, Virendra, Ankur, Raja (Rajasthan) need to think on Social Safety Network. Why MD is not included under Multiple Disabilities under the National Trust. Think and take action. Life is a beautiful gift of God.... lets live it to the fullest come what may (Shayad Kehna Aasan Hai )Can't say more than that.

Ms. Sanjana Goyal, Indian Assn.of Muscular Dystrophy, Hospital Road, Solan , H.P. http://www.iamd.org/, sanjanagoel@gmail.com

Dear All,

I strongly condemn Geetha, and am thankful to rest all who have taken out little time to give their comments on this issue.Your comments will go a long way to bring a support system for such families.as Sanjeev says rightly that this not the first time it's happening in our country. The only thing I would like to say here is, we should have a support system for families where ever there are persons affected with muscular dystrophy. Had there been a support system /awareness in the country ,the children would not have reached this condition. We as a very small group cannot reach each and every person affected with this cruel disease.And of course Government not only in Uttar Pradesh but in the whole Nation should take THIS CAUSE seriously. I assure you all that by tomorrow we will be in touch with the family and not let our children die like that. SAD PART IS THAT THE CHILDREN HAVE REACHED THIS CONDITION WHERE THEIR SUFFERING HAS INCREASED SO MUCH.--

Subhash Chandra Vashishth (subhashvashishth@gmail.com)

Dear Sanjana,

I laud the efforts of the Muscular Dystrophy association in coming to aid and sensitizing society about this condition. However, lets us no condemn Geetha or the parents or any body else who might have favoured mercy death looking at the pain and suffering for every one has a right to express their views and concern based on their experience. The right way would to be to put up a right picture of a rights based society before such people. I am sure No parent or socially awakened people like Geetha would ever think of allowing the children die had the social support structures were little better. Lets join this cause in supporting this family though innumerous ways - writing to all concerned and finding an organisation who can get in direct contact with the family. Thanks Sanjeev for your considered views. Can something be done on behalf of Sahyogi and National Trust. I agree the condiiton MD per se is not covered under National Trust Act, but when you have such degenerative physical disability requiring physical support for day to day care- it is deemed to be a multiple disability and thus covered under NT Act.

Sanjeev Sachdeva (sanjeevsach@hotmail.com)

Need of the hour and concentration shall be on support services. Sahyogi Scheme might offer little respite to family. Sanjana's and IAMD and Goyal's contribution in bringing MD into the National scene is beyond imagination. Hats off you initiate, i follow

Divvya Bajpai, Public Policy and Management GroupIndian Institute of Management, Calcutta, divvyabajpai@gmail.com

This email is a series of communication about the request by parents of 4 children aged 10 to 16 who are leading a vegetable life as they are in the last stage of Muscular Dystrophy. This intro is for those of you who i have included in the reply in Bcc. If you would be spending some time toread the email, your views or reply to me are welcome. My apologies to anyone who would not have preferred to get this email.

I would not condemn Geetha. She has a valid argument about what might be in the best interests of a terminally ill patient. There is a fear and disdain of death that might lead us to reject euthanasia when a patient who is in terminal stage of Muscular Dystrophy is in deep suffering. I believe in afterlife and rebirth so it does not bother me if i were to die today itself!

If these children can be helped with support of various kinds and can lead a life like my mother (almost 20 yrs of gradual decline), uncle do where they are able to a look after themselves to whatever extent as they remain confined to bedthat is the way to go, of course. Can't really comment unless i knew the graveness of their condition. from the mails below, the parts in different colours are dreams that we have of future and towards which we should work/walk consistently! To mobilise, support each other!

People get motivated by various things in life. For e.g. i got motivated to move towards public policy to work further on these issues that includes concerns of those inflicted by mental and physical challenges/illnesses/disabilities, and the families or others who support them. Happy to get to know today of other people besides Sanjana who are inspiring. for myself, if this is what life has to hold for me, i will live graciously, work, raise awareness, create support systems if i was afflicted by a serious degenerative illness (God forbid it, of course!) and would prefer to be granted euthanasia if i turn into a vegetable and had to be made to survive somehow for a year or more.

Mr. Yogesh Sharma yogeshs@denonline.in

Dear All, No parents will ever opt for that but what do they do when there is no hope. We lack the support systems in metros, how do parents take care of four sons and that too in some remote area. I feel the most important thing is to know that are we or any other organisation is really equipped to reach this family and able to extend them some support.

Manish Sawhney, msawhney@eicher.in

Dear Divvya ji, Your views and encouragement about supporting each other are most welcome and appreciate your positivity towards life and its challenges. Life is not easy for anybody and it all depends on each person how he takes each challenge and difficulty ... i know it is easier to talk for person like me who is not directly suffering.. but a lot depends on our own will and our thoughts ... We have another live example of a disabled person - Mr. Rajender Johar in Delhi who has been confined to bed since many years. However just with his sheer will, he is today running a full organisation called "Family of Disabled". Due to his spinal injury he cannot get up and is dependent on his care taker, but he has helped so many disabled people to earn their living and live respectfully. Death is inevitable but we are not born to decide when to die and how to die. We have taken birth to live, as best as possible.Today if we start advocating the suicide or a mercy killing, then who will decide how much suffering is enough to exercise that option ?.. is a BIG question. With all due respect for the sufferings of families with multiple MD affected children, Losing the battle without fighting it is not an option and it will only encourage the pessimistic scenarios of losing our individual battles against MD rather than finding and working towards its solutions. For the situations like subject case of 4 sons with MD, we should strengthen the cause that our friends - Mr.Sanjeev, Ms. Sanjana, Ms. Anjlee and others are taking up with the Govt. i.e. the right to have an attendant per patient and the adequate care facility for MD patients. But nothing would happen unless we all unite and organise ourselves. And a major obstacle is that may be we need to create a centralised database with the collective support of these organisations & individuals , that can be taken to the govt. to show about the extent of the problem. Let's join hands and take this cause further. Let us strengthen the existing support groups and create more wherever required. warm regards,

Sanjana Goyal, divvyabajpai@gmail.com

Dear all, we are in touch with the effected family. Mr. Jeet Narayan says that he has to pay more than Rs.one lac to a bank. Earlier he was the owner of a tent house,which is now ruined due to non payment and huge bank liabilities. Now his mother doesn't want mercy killing any more. In fact they thought that no one in the world suffers the way they are suffering. the media people are saying that , the 'effort' has become fruitful. 

We will be in touch with the Commissioner Mirzapur by tomorrow. We shall try to generate as much as fund as we can to provide him interim relief . Right now money will bring some relief to the affected family. We should try to see that his previous business "tent house'is on line again. This family has one normal daughter and a normal son for whom we need to create an environment so that they become an instrument to up bring the affected family. Genetic testing for the girl will be provided by IAMD. VOLUNTEER FOR THE CAUSE