Comments and Feedback on the Draft Twelfth Five Year Plan with respect to Persons with Disabilities

We write to you on behalf of the organizations representing people with disabilities listed at the end of this document. At the outset, we would like to thank you for circulating the Draft Twelfth Five Year Plan with respect to persons with disabilities in advance in order to gain the feedback and the perspective of all interested parties and stakeholders, including persons with disabilities. However, we would like to bring to your attention that while the entire budgetary allocation has been given to us in this draft, the specifics of the allocation i.e. the detailed break up has not been given, and so any input that we may have may be insufficient in the absence of this information.

The World Health Organization estimates that globally about 1 billion people (or 14% of the population) live with some form of disability of who nearly 200 million experience considerable difficulties in functioning.[1] Given the large prevalence of disability of approximately 14% of the population, it is submitted that the statistics of the 2001 census which states that only 2.11 % of the population is disabled is wholly inaccurate. If the financial outlay is based on the flawed assumption that only 2.11% of the population is disabled, we fear that the financial outlay will be substantially less than is necessary to meet the actual needs of people with disabilities. Therefore we recommend that the Twelfth V Year Plan should be based on realistic numbers of the persons with disabilities in the country. It is recommended that at least 5% of the total outlay for the Twelfth Plan should be for disability related projects. It is also recommended that a reality check is done on the benefits available to persons with disabilities such as pensions. Unless this is done, the benefits available to persons with disabilities is wholly inadequate.

We would like to point out that the document you had circulated does not give the status of the implementation of the various schemes that were proposed under the Eleventh V Year. Without the status of implementation of schemes proposed earlier, we are concerned that merely reiterating the same schemes for the upcoming Plan period may lead to suboptimal usage of the allocated funds particularly with respect to those schemes that have not been implemented to the maximum extent possible. We therefore request you to include the status of implementation of the various schemes that were proposed in the earlier Plan period to enable transparency in this exercise.

Before we give specific input and comments on the financial outlay, we would like to point out our grievance in the wording of Sec. 24.218[2] of the draft which states that persons with disabilities have "un-evolved capacities" and we strongly believe that this approach that persons with disabilities will completely obscure the optimistic approaches sought to be achieved by this Plan. While it is appreciated that persons with disabilities need some protection, using terminology like "unevolved capacity" is just reaffirming a protectionist attitude as well as patronizing one. We hope that this terminology will be removed from the document. We also point out that in point number 24.227 the United Nations Convention on the Rights of Persons with Disabilities is wrongly mentioned as "United Nations Conference on Rehabilitation of Persons with Disabilities (UNCRPD)". This error must be rectified.

Be that as it may, the undersigned would like to place on record our appreciation for the inclusion of many aspects into the above mentioned document. We would also like to bring your attention to several aspects given below which we believe should be covered in the Twelfth V Year Plan (hereinafter referred to as "the Plan").

Specific Input

I. Detection of Disability
Early detection of disabilities in babies and children is critical to determine what types of early intervention and rehabilitation is required to be provided. The Plan must provide financial outlay for the following with respect to detection of disabilities for further action:

1. At birth screening - Every baby born should be examined in detail using a standard examination checklist, to detect anomalies. The checklist should focus on detecting anomalies so that further follow up on developmental delay could be identified for at risk cases which could further lead to interventions. At birth screening must be made mandatory and the mother and child should not be discharged from hospitals without completing this procedure. Special attention must be taken to screen high risk babies (such as babies born to mothers who have diabetes, high blood pressure, thyroid deficiency, pre-term babies, babies with history of perinatal hypoxia, neonatal infections, low birth weight babies, etc.). The screening should be done free of cost and appropriate allocation should be done for the training of medical professionals and soliciting of equipment for this purpose.
2. Additional Screening In addition, screening by health workers, medical officers and doctors are required at stages like vaccinations, routine check ups, etc. The Plan must include allocation for training programs to be formulated and appropriate training must be given to all health care workers on how to diagnose disabilities and how to determine developmental milestones. Allocation of funds must be made to train doctors at maternity clinics/hospitals on conducting adequate checks/tests for early detection of developmental delays and disabilities If any disability is suspected, the child must be referred to the medical officer. There must be recognition of the fact that failure to detect disabilities at the early stage may lead to secondary disabilities.
3. Universal screening camps - The Plan itself must provide financial outlay to enable each state to organize bi annual universal screening camps for all school going children in the state to detect disabilities. The screening must be conducted for all disabilities. These camps must include the necessary manpower /specialists (including audiologist /speech therapist, clinical child psychologist, physiotherapist, etc.) and equipment required to detect all types of disabilities in babies. Appropriate budgetary allocations need to be in place. Universal screening camps must be held in conjunction with setting up of early intervention centres failing which the children identified to have disabilities will tend to face social stigma.
4. Registration of Births of Children with Disabilities: In accordance with the Persons with Disabilities Act, the Registrar General appointed under section 3 of the Births and Deaths Registration Act, 1969 shall whilst carrying out the superintendence duties of registering births and deaths in the country ensure, including by issuing general directions to all Chief Registrars and other concerned officials, that the registration of births and deaths of all children with disabilities is undertaken in accordance with the procedure specified in the Births and Deaths Registration Act of 1969.

II. Early Intervention
Early intervention has been touched upon in the policy document. However, there is not enough emphasis on this area. The importance of early intervention is well established. Early intervention provides support for infants and young children with disabilities, their families and communities, in order to promote the child's development and inclusion. Without early intervention it is extremely difficult for children with disabilities to be integrated into mainstream society. Delay in diagnosis and treatment results in irreversible damage to the child's development. Early intervention could be in the form of medical intervention and/or variety of disability specific rehabilitation intervention like different therapies and specialized training (specialized training or therapy). Early intervention would also include:

1. Counseling and training of parents of children with disability.
2. Early stimulation for High risk babies
3. Early Intervention for Developmental Delay, Speech & Hearing Problems, Visual Problems, Autism Intervention etc.
4. Parental guidance for supporting activities of daily living.

It is critical that early intervention centres are set up in each district in the country. The State of Kerala has created a blue print for setting up early intervention centres in each district in the State. This document is attached separately for your information. The Plan should incorporate salient features from this document. Point 24.226 must be modified accordingly.

III. Education
While the Plan places emphasis on education in point 24.222 a most critical aspect has been left out. Training of teachers to impart education to children with disabilities in an inclusive school setup is extremely critical if such children are to get a meaningful education. In this connection the Plan should provide financial outlay for ensuring that both mainstream teachers and teachers in special schools are provided the necessary training for imparting education to children with disabilities. The salary of all such teachers should be on par with regular teachers. The Plan should also provide for refresher training to be imparted to teachers in this connection. In addition to the above, the Plan should provide adequate financial outlay to ensure that all educational materials are provided to children with disabilities in the accessible formats they require including in Braille, Daisy, etc. It is also critical to ensure that schools are made accessible such that children with disabilities have equal access to 4 all parts of the school. Moreover, it is imperative that adequate accessible transportation is provided to enable children with disabilities to reach the school. In this connection, point 24.245 is adequately modified. The Plan should also ensure that children with disabilities have access to schools at every taluk.

In point 24.222 there is a mention of setting up a national accessible library. This is an extremely encouraging move. However, the national accessible library is not mentioned in the responsibilities of any of the Ministry. We recommend that the national accessible library is included in the responsibilities of the Ministry of Social Justice and Empowerment. The Plan makes no mention of the HEPSN scheme and capacity building in colleges and universities. This should be addressed explicitly. In addition, the Plan makes no mention of the role of the UGC. Given the fact that the UGC is responsible for higher education in India, it needs to promote inclusive higher education through adequate capacity building through incentivizing the setting up of resource centers and accessible content creation. It could also interface with organizations like the National Assessment Accreditation Council (NAAC) that is responsible for accrediting colleges and universities to ensure that the provision of certain minimum standards / disabled student registration be made compulsory to receive accreditation and consequent larger share of UGC grants. Financial support for college / university professors (human / technological) needs to be specifically mentioned and augmented over the Xlth plan outlays. Several existing plans including the ADIP Scheme and the IEDC Scheme need to be brought in line with practical realities and the amounts payable under such Scheme should be significantly enhanced.

IV. Employment
Point 24.221 rightly highlights reservation as being critical. However, the Plan does not tackle the issue of the huge backlog in this area that has crept in over the year. The Plan must deal with this issue on a priority basis. The Plan should also provide for bridge training to be provided to persons with disabilities to enable them to be equipped to perform their respective roles after they are recruited to mainstream jobs. In this connection it is critical that all government offices must be made accessible (both in terms of physical accessibility and also in terms of accessibility of the electronic infrastructure) failing which disabled employees will not be able work from these offices. Point 24.225 should be therefore adequately modified to reflect this. The Plan should provide for setting up of career guidance cells in every district for persons with disabilities. The Plan should provide financial outlay to ensure that they necessary assistive aids such as computer screen reading software is made available at government offices free of cost for employees with visual impairment. Lastly the Plan should also provide financial outlay to ensure that accessible transport is provided to persons with disabilities to travel to and from the work place. In the alternative the Plan should provide for additional payments to be made to ensure that persons with disabilities can make their own arrangements to take the mode of transport they are most comfortable in to come and go from their workplace.

V. Accessibility
Access to the physical environment as well as to information, technology and communication is an essential requirement for integration of persons with disability into mainstream society. It is critical to recognize that the lack of provision of accessibility is the same as discrimination against persons with disabilities. The provision of accessibility both by the Government and by the private sector is therefore critical and the Plan must make an effective strategy to ensure that both these stakeholders provide the necessary accessibility to persons with disabilities.

While accessibility is tackled in a general manner in point 24.225, this has not been adequately tackled in the responsibilities of the Ministries in the subsequent pages of the document. The responsibilities of each of the Ministries with respect to accessibility must be explicitly specified in the document. While the Ministry of Communication and Information Technology has been allotted some responsibilities, this does not cover access to content, access to telecommunication services or access to broadcasting. For further information on access to content, telecommunication services and broadcasting see Annexure A. In addition, point 24.225 mentions that only important government buildings must be made accessible. This approach is fraught with danger and the Plan must provide for all government buildings and buildings accessible to the public in general must be made accessible. The Government must also formulate a set of standards for accessibility.

We would also like to point out that the recommendation under the obligations of the Ministry of Railways to provide one coach for persons with disabilities is blatant discrimination and is "ghettoisation" of persons with disabilities. It is submitted that this is the same as asking any other minority community to use only a particular coach on the train and is in violation of Article 14, Article 15 and Article 21 of the Constitution. This provision will prevent persons with disabilities from having equal access to the air conditioned coaches, first class coaches and will also prevent persons with disabilities from travel on an equal basis with others. The Ministry of Railways should instead be mandated to ensure that every coach is made accessible for persons with disabilities. In addition, the Plan requires the Ministry of Railways only to make multilevel and multiple platform railways stations to be made accessible. This is blatantly discriminatory to rural India. We therefore recommend that all railway stations are made accessible, including toilets, rest rooms etc.

VI. Independent Living
In point 24.226, the Plan does touch upon the subject of Independent Living. However, there needs to be detailed specifications on the manner in which Independent Living for persons with disabilities are provided. The setting up of Independent Living Centres is extremely crucial in light of Article 19 of the United Nations Convention on the Rights of Persons with Disabilities. While this is not something which can be achieved overnight, the Government can begin by commissioning the setting up of one independent living centres or townships in each State over the next 5 years, which are fully accessible, and thus creating a model which can be replicated easily in the years to come. This would include independent living for persons with physical disability as well as psychosocial disabilities.

It has come to our attention that there has been a report filed by a committee under the Chairmanship of Additional Secretary, Department of Rural Development, Ministry of Rural Development, to make recommendations on the criteria for grant of benefits under the Indira Gandhi National Disability Pension Scheme. While the Scheme already includes "severe" and "multiple" disabilities, the Committee has also recommended the specific inclusion of autism and cerebral palsy. While the committee report itself is not available, this information is available in the press note . Choosing specific categories should not be encouraged whereas disability should be acknowledged based on the definition for persons with disabilities as provided by UNCRPD.

A crucial aspect to a real development of an individual with disability is not just pension but the support and assistance that he or she requires to live independently by effectively functioning and contributing in the family and community. In this respect, there is a huge requirement for personal assistants for persons with severe and profound disabilities. The National Social Assistance program should look at allocating funds to be disbursed for the payment of personal assistants for persons with disabilities rather than mere pension.

VII. Identity Cards and BPL Cards
We urge that the Plan takes all steps to ensure that identity cards are made available to all persons with disabilities in the country to ensure that they can easily access all the benefits available to them. These cards should be recognized throughout the country and accepted by all departments and authorities. We also urge that the Plan redoubles it efforts to ensure that BPL Cards are given to the applicable persons with disabilities.

Conclusion

In conclusion, we appreciate the initiative of the Government to double the financial outlay for persons with disabilities in the Twelfth V Year Plan to Rs. 32684 crores. However, there are significant areas that must be tackled as mentioned above if there has to be meaningful progress of persons with disabilities. We humbly request the Government to consider the points given above when finalizing the Plan.

We are happy to provide you any additional information in this connection.

Thank you and best regards,
Prepared by

Inclusive Planet Centre for Disability Law and Policy
Rahul Cherian and Amba Salelkar

With Input From:

1. Centre for Internet and Society
   Nirmita Narasimhan
   [email protected]
2. Xavier's Resource Center for the Visually Challenged
   Sam Taraporevala
   [email protected]
3. Daisy Forum of India
   Dipendra Manocha
   [email protected]
4. Andhjan Kalyan Trust
   Praful Vyas
   [email protected]
5. Parivaar
   J.P. Gadkari
   [email protected]
6. Ummeed Child Development Centre
   [email protected]
7. National Centre for Autism, India
   Merry Barua
   [email protected]
8. Network of Persons with disAbility Organisations
   Srinivasulu
   [email protected]
9. Disabilities Legislative Unit, South
   [email protected]
10. National Platform for the Rights of the Disabled
    A. Muralidharan
    [email protected]

[1]. http://whqlibdoc.who.int/publications/2011/9789240685215jeng.pdf
[2]. Protection acknowledging that Persons with Disabilities have 'un-evolved' capacities as a consequence of their disabilities and thereby have rights to protection; on the part of parents, community and the State from abuse and from participation in activities likely to cause them harm.

ANNEXURE A - Access to Content, Telecommunication Services and Broadcasting

Access to Content

Objective
All published content, whether printed or electronic, must be made available in accessible formats at the same time as it is first published and with no extra cost or hardship to persons with disabilities.

Strategy/ activities

• Books for education- both at the school and university levels, must be made available in accessible electronic formats. This could be a target to be achieved in five years. CBSE and state board syllabi in all languages may be made available in accessible electronic formats.
• Funds may be outlayed towards digitizing public libraries.
• Government may frame schemes for funding disability organizations which are engaged in converting books into accessible formats, as is done in other countries like USA.
• All the public libraries should have the facility to provide books in accessible formats to its disabled readership.
• Government may promote open access and open education resources amongst educational, scientific and research organizations and libraries and stress the need for accessibility.
• All government information must be available in accessible formats which can be accessed on multiple platforms like computers or mobile phones, including information provided through RTIs, etc.
• All archives containing digital copies of books must be able to provide a requested book in an accessible format, even where they have been unable to completely digitize their archives in an accessible manner. However, the long term target must be to have all archives completely accessible.

Access to Telecommunication Services

Objective:
To ensure that every person with a disability has access to basic telephone and broadband services both in rural as well as urban areas.

Strategy/ Activities:

• Public Kiosks and Common Service Centres set up by the Government must have at least one machine which is fitted with assistive technology for every ward.
• Each school and college with an ICT centre must have at least one computer befitted with assistive technology and should be manned by a trained instructor who can guide students in using them.
• Research and development must be funded in open source and cloud based solutions like screen readers and operating systems which will facilitate universal access at no cost to user. These research projects must necessarily have persons with disabilities to advise on the efficacy and design of the product.
• Assistive technologies for computers and mobile phones must be developed in local languages and be made available at low cost.
• Schemes may be launched to provide funds to persons with disabilities to purchase assistive technologies for their computers or handsets.
• Each household with a person with disability must have a broadband connection and telephone connection.
• At least 1 public pay phone in each area must be accessible with texting facility.
• A national toll free emergency number must be set up like Reach 112 in Europe.
• TRAI must include persons with disabilities in its periodic survey to gauge their access to telecommunication services. Similarly the DoT and DIT must make available data on ICT access for persons with disabilities.
• A Code of Good practice should be evolved for servicing disabled customers which contains both minimum as well as best practices to be adhered to by service providers.

Service providers/ operators:

1. Should make their services accessible for persons with disabilities. Information about their accessible services must be available on their web site, which should also adhere to WCAG standards.
2. Should collect data on the number of their disabled customers and frame at least 1 or 2 schemes for persons with different disabilities and provide basic accommodations like accessible billing and accessible customer care. They could have a public relations officer to service the complaints of disabled customers.

• The charter of the Universal Service Obligation Fund must be expanded to include 'persons with disabilities' as an underserved community and all ongoing projects must be made inclusive.
• The DoT must make special mention of persons with disabilities in the Telecom Policy and also formulate specific policies to connect them with accessible telecom services.

Access to Broadcasting

Objective
To provide broadcasting access to persons with various disabilities.

Strategy/ Activities:

• It must be made mandatory for all television programming to be recorded with clearly legible and appropriate audio descriptions and closed captioning.
• All films must have clearly legible and appropriate closed captioning and audio description, and sign language tracks recorded and this must be made a prerequisite for obtaining a censor certificate.
• All new theatres must have facilities for patrons to access closed captioning/audio descriptions/sign language, without which they should not be granted licenses. Existing theatres should be granted a period of 1 year within which such facilities should be obtained. These facilities should be available at no extra charge beyond that of the ticket to patrons.
• In the ongoing compulsory digitalization of cable television in India, all set top boxes being procured must be made accessible to persons with vision/cognitive disabilities. Optional voice navigation must be made mandatory for all set top boxes being sold/imported into India.
• All new television receivers/set top boxes must have built-in decoder circuitry or capability designed to display closed captioned video programming, the transmission and delivery of video description services, and the conveyance of emergency information. Existing patrons should be allowed to exchange their television receivers/set top boxes for accessible ones.
• All new television sets sold or imported in India must be equipped with built-in closed caption decoder circuitry or capability designed to display closed-captioned video programming/ audio descriptions, and have the capability to decode and make available the transmission and delivery of video/audio description services, and have the capability to decode and make available emergency information in a manner that is accessible to individuals who are disabled.

Inclusive Planet Centre for Disability Law and Policy
12/21 Custain Beach Road, Santhome,
Chennai - 600 004.
Tel: +91-44-24611313
Fax: +91-44-24617924
www.inclusiveplanet.org.in