RTI query dated 06-02-2009, to National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities
 Response No. 4/88/RTI/2009/11074 dated 06-03-200

Following an Right to Information query to the Ministry of Social Justice and Empowerment, on compliance to the UN convention regarding autism, we received a response saying that “cerebral palsy is covered under the PWD Act, 1995, and autism is covered under National Trust Act”. (Letter No. 32-79/2008-DD.III dated 12 January 2009) We thus, understand that safeguarding the interests of people suffering from autism in India under the National Trust Act is the responsibility of the National Trust and compliance to the UN Convention on the Rights for Persons with Disability with regard to autism is also under the supervision of National Trust. If we have misunderstood the legal position in India in any way, do tell us the exact position in this regard.

Please provide us the following information pertaining to the welfare of people with autism in India and initiatives taken in compliance to the UN convention on the Rights of Persons with Disability.

 

The UN Convention in article 4.1. (a) says “to adopt all appropriate legislative, administrative and other measures for the implementation of the rights recognized in the present Convention”

Q.1. What legislative, administrative measures have been taken for betterment of persons with autism till the date of this application towards implementation of the Convention?

 A.1. The National Trust has initiated process of consultation with different stake holders in different parts of the country and has assigned the work of preparation of draft amendment in the National Trust Act to NALSAR University, Hyderabad.

The UN Convention in article 4.1. (b) says “to take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities”

Q.2. What modifications have been made in the existing laws and regulations in this regard to address discrimination against persons with autism?

Q 3. What steps have been taken till date of this application to identify customs and practices that constitute discrimination against persons with autism? Which of these customs and practices have been modified or, abolished? Kindly share the details of procedures which has been adopted for this?

The UN Convention in article 4.1.(e) says “to take all appropriate measures to eliminate discrimination on the basis of disability by any person, organization or private enterprise”

Q 4. What steps have been taken to meet the elimination of discrimination towards persons with autism as mentioned in Articles 4.1.(e) of the UN Convention?

The UN Convention in article 4.1.(f) says “to undertake or promote research and development of universally designed goods, services, equipment and facilities, which should require the minimum possible adaptation and the least cost to meet the specific needs of a person with disabilities, to promote their availability and use......”

Q 5. What research or development have been undertaken till date of this application to comply to this article for people with autism?

 A.2. to 5 Same as above
 Q.6. What equipments and facilities have been adapted and what number of people with autism are using these? A.6. National Trust has planned to set up a National Resource Centre to disseminate information and create awareness about various assistive devices, equipments, software etc. available for persons with disabilities and also to provide them an opportunity to get a hands-on experience about using such devices etc.  The work has already been assigned to Media Lab Asia and the implementation is under process.  Besides this, National Trust has already installed six Information Kiosks in six different hospitals of Delhi for the use of persons with disabilities and their guardians/parents including persons with Autism.

The UN Convention in article 4.1.(g) says “to undertake or promote research and development of, and to promote the availability and use of new technologies, including information and communications technologies, mobility aids, devices and assistive technologies, suitable for persons with disabilities, giving priority to technologies at an affordable cost”

Q.7. Details of availability of Information and Communication Technologies, devices and assistive aids made available to people with autism in India? What funds have been allocated towards this for autism? What benefit a person with autism could get from the technology? What number of people with autism are presently using these in India?

 A.7. Same as above.  National Trust has allocated Rs. 60 lakhs towards setting up of National Resource Centre.  Expected benefit for persons with disability including Autism will be with regard to information, education and communication.  The National Trust does not compile data about the number of people with Autism, presently using such devices in the country.

The UN Convention in article 4.1.(h) says “to provide accessible information to persons with disabilities about mobility aids, devices and assistive technologies, including new technologies, as well as other forms of assistance, support services and facilities”

Q.8. What efforts have been taken to provide information to persons and caretakers about assistive technologies? What funds have been allocated in this direction?

 A.8. Same as above.

The UN Convention in article 4.3. says “In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.”

Q.9. Who are the people involved in development and implementation of legislations and policies to implement the present Convention? Kindly provide us their names and addresses and details of their disability? Details of which organizations have been involved, and what is their area of work?

 A.9. Chief Commissioner for Disabilities, Office of the Chief Commissioner for Disabilities, Sarojini House, 6 Bhagwan Das Road, New Delhi-110001; 
* Chairperson, Rehabilitation Council of India, B-22 Qutub Institutional Area, New Delhi-16; 
* National Trust, 9th Floor, Jeevan Prakash Building, 25 K.G.Marg, New Delhi-1; 
* Ministry of Social Justice & Empowerment, Disability Division [Mr. Arbind Prasad, Joint Secretary(DD)]; 
Other following Ministries are also being involved: 
* Ministry of Labour;
* Department of Education;
* Ministry of Labour;
* Ministry of Women & Child Development;
* Ministry of Urban Development;
* Ministry of Rural Development

The UN Convention in Article 6.2. says “States Parties shall take all appropriate measures to ensure the full development, advancement and empowerment of women, for the purpose of guaranteeing them the exercise and enjoyment of the human rights and fundamental freedoms set out in the present Convention.”

Q.10. What special initiatives have been taken to ensure full development, advancement and empowerment of women suffering from autism for the purpose of guaranteeing them the exercise and enjoyment of the human rights and fundamental freedoms?

 A.10. As stated in answer 1 above.
 Q 11. Kindly provide us information on what number of women in India are suffering from autism? A.11 No such figure is available with National Trust.
 Q 12. What number of girls suffering from autism in the age group of 6 to 14 years are in schools and enjoying the benefit of free education? A.12 Same as above.

The UN Convention in article 7.1 says “States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children.”

Q 13. What number of children (upto 14 years of age) suffering from autism are availing medical treatment in India? Kindly provide details of number of male and female children.

 A.13 Same as above.
 Q.14. How are the children with autism identified in India? Basing on this identification standard, what number of children in India have been identified as suffering from autism? What are the provision for health check-up, treatment and education facilities for them? A.14. Doctors usually diagnose Autism in India.  National Institute for the Mentally Handicapped, Secunderabad has developed a tool in this regard.  Presently, National Trust does not have details about number of children in India who have been identified as suffering from Autism.  However, for medical facilities, National Trust has floated a health insurance scheme called Niramaya under which medical facilities including health check up, treatment are provided throughout the country (except J&K) for all enrolled persons with four kinds of disabilities covered under National Trust Act.  Regarding information on educational facilities, you may consult Ministry of Human Resource Development.

The UN Convention in article 7.1 says “ States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children”

Q.15. Kindly furnish me details of inclusion of these children in normal schools. How many children with the disability autism are in normal schools studying with other normal children? How many of them are male and female? They constitute what percentage of total children with autism in India?

 A.15. National Trust does not compile such figures.  You may like to consult Ministry of Human Resource Development.
 Q.16. What number of teachers are trained till the date of this application for taking care of education of children with autism in normal schools? A.16. Same as above.

The UN Convention in article 7.2 says “ In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration.”

Q.17. In continuation to the above question 15, what special teaching learning material is in use for these children?

 A.17. The Special Teaching Learning Materials are generally child specific.  Extensive materials have been developed by Dr. Pratibha Karanth, under the ComDeall Programme.  The National Trust is funding the printing and distribution of the Manual in 8 languages.  National Trust also funded resource persons to attend the 3 day seminar in Bangalore by ComDeall to learn how to use some of the materials.

The UN Convention in article 7.3 says “States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.”

Q18. What aid and assistance has the Indian state provided to people with autism, to help them express themselves?

Q19. Are the persons with autism being provided aid and assistance in the form of communication support or other devices?

 A.18. and A.19. The Aids & Assistance have mostly been for communication and learning, for example – Kathamala developed by Webel & Indian Institute of Cerebral Palsy, Kolkata.  We are now promoting the development of similar assistive devices like ‘Slate’ and Kavi by IIT Madras.  Many Activity based materials across schools are also used initially for some students.  It is important to realize that student specific aids are very important and are being developed by teachers & parents.

The UN Convention in article 8.1. (b) says “To combat stereotypes, prejudices and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life

Q.20. What is the process to identify prejudices and harmful practices as mentioned in the above Article?

 A.20. The process to identify any prejudice and harmful practice prevailing in society is by way of consultation, communication,  awareness generation and interaction with different stake holders and community at large.
Q.21. In compliance to the above article what prejudices and harmful practices relating to persons with disabilities, in particular to persons with autism have been dealt with so far? What was the procedure followed to address these? A.21. In a Survey of 28000 households conducted by National Trust in Delhi, we found the most detrimental practice is to hide a child with disability.  Parents of children with Autism did not want to report that they had a child with Autism.  They did not want such a label.  Therefore, there is considerable under reporting.  The most important prejudice & harmful practice that needs to be addressed is one of social exclusion and stigma.  This has to be overcome by changing attitudes and creating more awareness.  The National Trust is attempting to do this through the Awareness Programmes and other materials that are being developed.

 The UN Convention in Article 8.2.(iii) says “To promote recognition of the skills, merits and abilities of persons with disabilities, and of their contributions to the workplace and the labour market”

Q.22. Kindly provide us details of activities undertaken for complying to this article. As a result of these activities, what numbers of persons with autism in India have been employed in different sectors? Kindly provide details of sectors where they are employed?

 A.22. Same as explained earlier.  Employment figure is not compiled by the National Trust

 The UN Convention article 9.1 says “To enable persons with disabilities to live independently and participate fully in all aspects of life, States Parties shall take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities and services open or provided to the public, both in urban and in rural areas.

Q.23. What steps have been taken by the National Trust in order to address the above article?

 A.23. National Trust has initiated several steps and schemes in order to address issues concerning persons with disabilities.  You may refer to our Annual Report which is also available on our website www.thenationaltrust.in.  Besides, details of various programmes & activities are also available on our website.
 Q.24. What barriers have been identified for elimination in this direction? A.24. For the persons with Autism, the main barrier is people’s attitude of their acceptance in public.  This can be overcome through more awareness programmes and changing mindsets.  Several programmes are carried out by the National Trust from time to time, details may be obtained from the annual report and/or on our website.

The UN Convention in Aticle 9.2.(e) says “ States Parties shall also take appropriate measures to provide forms of live assistance and intermediaries, including guides, readers and professional sign language interpreters, to facilitate accessibility to buildings and other facilities open to the public”

Q.25. Kindly provide me details of such services as mentioned in article 9.2.(e) for people with autism. What kind of assistance, intermediaries, interpreters are provided to people with autism in public places like hospitals, schools, hotels and restaurants, museums, zoo, planetarium, and other places interest? Kindly furnish number of people for assisting them in each of such places in India.

 Q.25. Same as above.
 Q 26. What number of government-run and privately-run hospitals in India have trained staff to assist people with autism? What number of people have been trained for the same?
Q 27. What number of government-run, government aided, privately-run schools in India have trained staff to assist children with autism? What number of people in these schools have been trained for the same?
Q 28. What number of hotels and restaurants in India have trained staff to assist people with autism? What number of people have been trained for the same?
Q 29. What number of museums in India have trained staff to assist people with autism? What number of people have been trained for the same?

Q 30. What number of zoo in India have trained staff to assist people with autism? What number of people have been trained for the same?

Q 31. What number of planetarium in India have trained staff to assist people with autism? What number of people have been trained for the same?

The UN Convention in Article 9.2.(g) says “ States Parties shall also take appropriate measures to promote access for persons with disabilities to new information and communications technologies and systems, including the Internet”

Q 32. What steps have been taken in this direction? What number of people with autism have taken the benefit of these till the date of this application?

Q 33. What amount has been allocated for this activity in each plan year and what amount from that allocation have been used for people with autism? In case no separate allocation and expenditure has been made for autism, kindly share details of head under which allocation and expenditure has been made.

The UN Convention in Article 9.2.(h) says “ States Parties shall also take appropriate measures to promote the design, development, production and distribution of accessible information and communications technologies and systems at an early stage, so that these technologies and systems become accessible at minimum cost.”

Q 34. What steps have been taken in this direction? What number of children with autism in India have taken the benefit of these till the date of this application?

Q 35. What amount has been allocated for this activity in each plan year and what amount from that allocation have been used? In case no separate allocation and expenditure has been made for autism, kindly share details of head under which allocation and expenditure has been made.
 A. 26. to A.35. No such figure is compiled by the National Trust.  However, as far as National Trust is concerned, all the expenditure relates to persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities.  The expenditure details can be seen in our annual report.  But disability wise bifurcation of expenditure detail is not prepared.  Expenditure details in other sectors as referred to in your questions, may be obtained from the relevant Ministries of the Government of India.

The UN convention in Article 11 says “States Parties shall take, in accordance with their obligations under international law, including international humanitarian law and international human rights law, all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters.”

Q 36. Kindly furnish details of efforts which have been made till date of this application to comply with this requirement of the Convention.

The UN Convention in article 12.3 says “States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.”

Q 37. What measures have been taken to meet the above article? If, till date no steps have been taken to comply with this article, what is the plan for this?

 Ans. 36 & 37. As already explained earlier.
 Q. 38. Are the courts equipped with trained people to assist andinterpreters for people with autism? If yes, kindly furnish what number of courts have trained people for assisting them and number of trained people for this. If no, kindly furnish details of plan for this. A.38. National Trust does not compile such figures.  You may approach Hon’ble Courts directly in this regard.

The UN Convention in Article 13.2 says “In order to help to ensure effective access to justice for persons with disabilities, States Parties shall promote appropriate training for those working in the field of administration of justice, including police and prison staff.”

Q.39. What number of trainings have been provided to those in the field of administration of justice, including police and prison staff for ensuring effective access to justice for persons with disabilities and in particular for persons with autism? Kindly share the details of date of the programme and number of people who have attended the programme?

 A.39. National Trust carries out training and sensitization programmes from time to time through its registered organizations for different stake holders including those in the field of administration of justice.

The UN Convention in Article 16..1 says “States Parties shall take all appropriate legislative, administrative, social, educational and other measures to protect persons with disabilities, both within and outside the home, from all forms of exploitation, violence and abuse, including their gender-based aspects.”

Q 40. Kindly furnish details of efforts which have been made till date of this application to comply with this requirement of the Convention.

The UN Convention in Article 16.2. says “States Parties shall also take all appropriate measures to prevent all forms of exploitation, violence and abuse by ensuring, inter alia, appropriate forms of gender- and age-sensitive assistance and support for persons with disabilities and their families and caregivers, including through the provision of information and education on how to avoid, recognize and report instances of exploitation, violence and abuse. States Parties shall ensure that protection services are age-, gender- and disability-sensitive.”

Q 41. Kindly furnish details of efforts which have been made till date of this application to comply with this requirement of the Convention, for people with autism.

 A. 40 and A.41.  As explained earlier.

The UN Convention in Article 16.3. says “In order to prevent the occurrence of all forms of exploitation, violence and abuse, States Parties shall ensure that all facilities and programmes designed to serve persons with disabilities are effectively monitored by independent authorities.”

Q.42. Which independent body/authority has been formed for ensuring all facilities and programmes designed to serve persons with disabilities, in particular for people with autism? Kindly provide contact details of this body?

 A.42. National Trust for the welfare of Persons with Autism, Cerebral Palsy, Mental Retardation & Multiple Disabilities is the independent Statutory body set up by the Government of India through an Act of Parliament for ensuring all facilities and programmes designed to serve persons with disabilities as given in the National Trust Act.  The contact details of this body (presumably available with the applicant) can also be obtained from the website.
The National Trust in turn has not set up any singular independent body or authority for covering all such facilities.  Instead it has constituted Local Level Committees for appointment of guardianship and other programmes and activities at district level.  For activities at field level, National Trust supports organizations registered with the National Trust including Parents Associations and Associations of Persons with Disabilities it has also floated a marketing federation called ARUNIM for providing marketing facilities for products and services offered by persons with disabilities.

The UN Convention in Article 16.4. says “States Parties shall take all appropriate measures to promote the physical, cognitive and psychological recovery, rehabilitation and social reintegration of persons with disabilities who become victims of any form of exploitation, violence or abuse, including through the provision of protection services. Such recovery and reintegration shall take place in an environment that fosters the health, welfare, self-respect, dignity and autonomy of the person and takes into account gender- and age-specific needs.”

Q43. Kindly furnish details of efforts which have been made till date of this application to comply with this requirement of the Convention, for people with autism.

The UN Convention in Article 20.(d) says “Encouraging entities that produce mobility aids, devices and assistive technologies to take into account all aspects of mobility for persons with disabilities.”

Q44. What assistive technology has been till date of this application been designed for people with autism? How many people in India are currently taking benefit of these assistive technologies?

Q45. Which groups/bodies have been supported for producing mobility aids, devices and assistive technologies for people with autism? What funds have been allocated in each plan year and expenditure been incurred for each plan year?

 A. 43 to 45. As explained earlier.

The UN Convention in Article 24.5. says “States Parties shall ensure that persons with disabilities are able to access general tertiary education, vocational training, adult education and lifelong learning without discrimination and on an equal basis with others. To this end, States Parties shall ensure that reasonable accommodation is provided to persons with disabilities.”

Q.46. Kindly furnish details of children with autism in primary and secondary classes in India in government run schools, government affiliated or supported schools, private schools, vocational training institutes and special schools meant for them. Kindly furnish data for the year 2001 and year 2008.
 A.46. National Trust does not compile such figures.

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