1 JULY 2022

Recommendations for Draft New National Disability Policy - May 2022

BY NIVEDITA KRISHNA

Introduction


The new National Policy for Persons with Disability (NPPD) aims to improve the lives of persons with disabilities (PwDs) from birth through life by enabling greater inclusion in 11 domains including education, health, early identification, disability certification, social security, accessibility, disaster management, strengthening institutional reach and capacity building, and protection of rights. This policy has culminated from the UNCRPD (2007), Incheon Strategy Asia Pacific (2013-22) as well as the RPWD Act (2016) and the NEP (2020) – a landmark policy in education that promotes inclusion for children with disabilities (CwDs) in more pronounced ways. The new NPPD policy approaches issues in the sector through a human rights-based approach and desires to be at par with international standards in provision of improved quality of life for PwDs through inclusion.


We at Pacta are committed to bringing long-term changes to the lives of PwDs in a meaningful and impactful manner through research in law and policy implementation. Our goal is to contribute to evidence-based legal policy making particularly in the health, education, employment and welfare for children and adolescents with disabilities, so no PwD is left behind. We strongly believe that to make a difference, we need to start young. Our vision is to see PwDs included in the society in a significant way.


We greatly appreciate the effort of the Ministry of Social Justice and Empowerment in bringing forth this futuristic policy document, which has its merits in being locally viable and globally aligned. Based on the draft National Policy for Persons with Disabilities released in May 2022, we hereby submit a set of recommendation for your kind consideration –


A.    General


●      The policy is comprehensive and aligned with UNCRPD and Incheon Strategy. It is crucial that the policy should be followed up by a clear strategy for operationalizing the objectives and principles embodied in the policy. In the absence of a National Strategy For Improving Inclusion and Accessibility for PWD, that clearly provides for an implementation plan, resourcing of the implementation, well-defined targets, measurement and evaluation against targets, progress towards the welfare of PwD will not happen.


●      Another concern is that lack of a disability-wise policy, which is imperative for operationalizing the policy. The policy must also   demarcate and distinguish between disability by birth and acquired disability through disease (stroke, diabetes, cancer etc) or accident.


●      The policy must make specific directives for rectifying gaps between various existing policies and laws. For instance, under state specific Right to Education Rules, several states do not include “disability” under the category of “socially disadvantaged groups”. Legal amendments to align the law with the policy must be made a specific agenda of the policy.


●      The policy does not provide measures for encouraging rights awareness of PwD and for creating institutional capacity for rights enforcement. Without rights awareness, even well intended laws and policies will lie dormant.


●      The emphasis on data collection and reporting and accessibility of this data is greatly appreciated. However a robust methodology for data collection in various sectors by different government departments needs to be laid out in the current policy.


●    The emphasis on convergence of different government departments in the implementation of various policies and schemes as seen in the Integrated Child Development Scheme is appreciated. But allocating specific responsibilities and functions to government departments is essential to avoid overlapping.


●      The policy does acknowledge the presence of government, private, NGOs, participants in the eco-system in service provision for PwDs. But the policy does not leverage the role of NGO/CSO in the domain.


B.     Specific


Chapter 1: Introduction


Page and Clause number: Pg 3; 1.2. Statistics

Clause description: The 2011 Census puts the number of persons with disabilities at 2.68 crores implying 2.21% of Indian population has some form of disability, as compared to global average of 15%.

Suggestion/Observation: The sentence seems to read that India is doing better than the world standards in disability. It is to be noted here that the census data was before the RPWD Act 2016, which has added different disabilities since. Hence to be qualified with that statement.


Page and Clause number: Pg 4; 1.2. Diagrammatic representation

Clause description: Pie chart representation of the prevalence of the different disabilities in India

Suggestion/Observation: A further slice & dice of data would be more meaningful to include rather than aggregated findings. The use of the term mental retardation to be changed to intellectual disability per the RPWD and international nomenclature.


Page and Clause number: Pg 4-5, 1.4. Literacy and employment

Clause description: As per Census, 2011, literacy rate of the total PwD population is about 55% (male – 62%, female-45%). As regards higher education, only about 5% of PwDs are graduate and above. Census data of 2011 further shows that about 36% of the total PwDs are employed (male - 47%, female-23%).

Suggestion/Observation: It would be useful here to report on educational status of CwDs based on updated DISE data. An elaboration on where PwDs are employed will provide an understanding on the sectors that they are employed in if there is data to back it.


Page and Clause number: Pg. 5, 1.6. Models of disability

Clause description: Disability was earlier viewed only from medical perspective. Over the years, there has been paradigm shift in understanding disability worldwide and today it is viewed as a socio-medical issue.

Suggestion/Observation: There is a big shift in the global models of disability today. International narrative has shifted to a human rights-based approach that is rooted in the UNCRPD’s missions rather than a socio-medical model. It is recommended that socio medical model be replaced with rights based approach.


Page and Clause number: Pg. 7, 1.11. Incheon Strategy for Asia Pacific Decade for PwDs: 2013-2022

Clause description: Identifies 10 goals for the Asia-Pacific countries to ensure inclusion and empowerment of PwDs in the region.

Suggestion/Observation: There is an imperative to measure and evaluate progress against these goals. The policy must make it a National agenda to promote research that measures progress so that it can be tracked.


Page and Clause number: Pg.8, 1.13

Clause description: Align the domestic law in line with the provisions of the UN Convention

Suggestion/Observation: There are several gaps between the RPWD Act and RTE Act. Other than disability specific laws several education and labour laws need to me amended to bring alignment with the UNCRPD. The policy must make it a National agenda to propose these amendments.


Page and Clause number: Pg. 11, 1.17.Addressing challenges 

Clause description: Changing the mindset and perception of the members of the society so as to have proper understanding of the problems of the persons with disabilities.

Suggestion/Observation: This is a positive step especially for a country like India given our socio-cultural attitudes towards disability. The policy will be impactful if it also lays out how “changing mindsets” will be accomplished.

Clause description: Creating and managing disability specific disaggregated data in each sector be it health, education, poverty alleviation, law and order, sports, culture etc.

Suggestion/Observation: In the spirit of India’s move towards open national data sets, it would be useful if there is a single comprehensive and digitized source of data (in line with the proposed National Database, Clause 2.4.). As per Chapter 14 (Clause. 14.1.), there is a mention of different databases being maintained by concerned departments and interlinked through the UDID. It needs to be made explicit that all this data must be available under a single portal. Additionally, employment data can be added to this clause so it is stated explicitly.

Clause description: Involving PwDs in the decision making process at various levels for better policy formulation, monitoring and implementation

Suggestion/Observation: This is a crucial action step to ensure that policies are drafted from an inclusive view-point. This should also become a legal and regulatory mandate.


Chapter 2: Principles of the Policy


Page and Clause number: Pg. 15, 2.2. Principles of the policy

Clause description: Recognizes the need to create positive attitude towards persons with disabilities in the society.

Suggestion/Observation: For the Indian context, this clause should be expanded to include awareness creation about different disabilities and their needs. Awareness should discourage sympathetic and charity approaches to inclusion.  The Principle must explicitly emphasize that inclusion and empowerment enabling PwDs as contributing members, will automatically change attitudes.


Clause description: Emphasizing the use of Indian Sign Language as an effective mode of non-verbal communication in line with the provisions of UNCRPD.

Suggestion/Observation: This clause is limited to the persons with hearing disabilities and their need for ISL as a mode of communication. It is recommended that other modes of communication such as eye pointing, picture chart communication, and assistive technologies (as mentioned in Chapter 14 clause 14.2, 14.3) as alternate modes of communication such as AWAAZ.de (that is patented by IIT Madras) must also be acknowledged since these are followed practitioners while interacting with CwDs.


Page and Clause number: Pg. 17, 2.4. (x) Mission of the policy

Clause description: Creating a national database of PwDs and linking thereof with programme delivery mechanism

Suggestion/Observation: It is suggested that this database be of, for and by the PwDs. In other words, the database must be useful for PwDs wherein they have access to information; contain information about them such as data on use of schemes, district-wise prevalence of disabilities; Where possible non-personal datasets must be included in India’s Open Government Data.


Page and Clause number: Pg. 17, 2.4. (xi) Mission of the policy

Clause description: Capacity Development in the field of disability studies and rehabilitation sciences to ensure the number of trained professional manpower at all levels including at community level.

Suggestion/Observation: Pay scales for special educators, vocational trainers, rehabilitation professionals, counsellors etc in this field are not attractive and not on par with other mainstream professionals. This results in a brain drain of these professionals to other countries. Improving pay scales/incentivizing employment in this domain including at the community level is important in addition to capacity development. 


Chapter 3: Prevention, Early Identification, and Intervention


Page and Clause number: Pg. 18, 3.1.1.Prevention of disability

Clause description: Prevention is better than cure. The Rights of Persons with Disabilities Act, 2016 emphasises prevention of disability through appropriate awareness measures, investigation, research and mother and childcare.

Suggestion/Observation: Additionally, proper antenatal care is essential. Nutrition awareness and supplements need to be provided for pregnant mothers. Provision for detections of malformation in the womb must be included. Family planning information should be provided keeping in mind socio-cultural and religious sensitivities. Implementing well baby programs to assess normal development is also important. Above additions to the clause are suggested.


Clause description: Some of the disabilities such as disability caused due to blood disorders, neurological conditions could be prevented by sensitising the public about the causes of its occurrence.

Suggestion/Observation: This statement is unclear. A distinction between childhood disability (birth onwards) or acquired disability (at any age) needs to be made in the policy.


Page and Clause number: Pg. 18, 3.1.2. Departments

Clause description: Ministry of Health and Family Welfare implements various programmes for prevention and control of disabilities, which are: Moreover, with the addition of new disabilities under the RPwD Act, 2016, there is a growing need to develop strategy to prevent the new form of disabilities based on scientific research.

Suggestion/Observation: This statement is unclear. A distinction between childhood disability (birth onwards) or acquired disability (at any age) needs to be made in the policy. Moreover, we need to be careful on what scientific/evidence-based research is. It must be evidence-based in the context of India and the diagnosis scales and tools be relevant to the Indian context. This recommendation can be extended to Chapter 14 Clause 14.2. Research and Development. 


Page and Clause number:Pg. 20, 3.2.2.Early childhood

Clause description: This is the period when early symptoms of any deformities or risk cases can be detected and treatment/therapeutic intervention for achieving necessary preventive, corrective and rehabilitative response undertaken to prevent disability or lessen its severity.

Suggestion/Observation: It is suggested that the following language be added: “This is a period to promote optimal growth and enhance developmental outcomes.”


Page and Clause number: Pg. 23, 3.2.5. CDEICs

Clause description: These Centres to serve as a training center for training to the staff of PHC/CHC level and ASHA/Anganwadi workers for home based rehabilitative care services.

Suggestion/Observation: It must be clarified as to how the role of existing Anganwadis, DEICs, as per the ICDS scheme would be modified after introduction of CDEICs.

Suggestion/Observation: Caregivers of CwDs need socio-emotional support, access to information in addition to training and counselling services. Similar to the Patient Provider Support Agency envisaged under the National TB Elimination program, empanelment of CwD caregiver Support Centres leveraging the private sector and CSO/NGO would help to strengthen sharing of information and practices and also leverage the network of private CSOs/NGOs in this domain.


Chapter 4: Disability Certification


Page and Clause number: Pg. 25, 4.5. Disability certification

Clause description: The district medical authorities need to take steps to ensure that the certificate is issued within 30 days of receipt of the application for UDID.

Suggestion/Observation: Currently PwDs are facing many challenges in obtaining the UDID. Clarification how tighter timelines would be achieved is important. Transparency of information i.e Status of certification to UDID applicants needs to be made available as the processing moves ahead.


Page and Clause number: Pg. 26, 4.5. Disability certification

Clause description: The States/UTs need to take steps so as to ensure that PwDs need not have to visit more than twice for assessment and certification of disability.

Suggestion/Observation: Currently PwDs are facing many challenges in obtaining the UDID. A universal mechanism to link existing state issued disability certificate (state issued) to the UDID portal should be stated in the policy and implemented across the country.


Chapter 5: Education


Page and Clause number: Pg. 31, 5.9. Overseeing of admissions for children with disabilities (CwDs)

Clause description: Every District will have nodal officer to oversee admission of students with disabilities in inclusive school setup without discrimination.

Suggestion/Observation: Discrimination is overt and covert when it comes to PwDs. Although stated by law based on RPWD Act 2016 - rights to equality and opportunity, discrimination particularly in private schools continue to date. There must be some legal action and legal aid provided to parents and caregivers. It is recommended that such a provision be added in the policy.


Clause description: A system will be developed to monitor the progress of each child with disability based on learning outcome.

Suggestion/Observation: In line with the National Education Policy, 2020, it is not just the individual learning outcomes that need to be focused on but individualized teaching and learning methods - individualized education plans (IEPs) need to be developed for children in inclusive classrooms particularly for those with intellectual disabilities. The clause should include such requirements as well.


Clause description: All the educational institutions will have accessible campus including accessible library and classrooms, toilets, auditoriums, etc.

Suggestion/Observation: Accessibility should not be limited to the physical realm alone. Sensitization and awareness building for peer, teachers and school administration staff must also be mandated. Often CwD who have completed the bridge course are unable to be integrated into mainstream schools.


Clause description: Disability specific course curriculum and evaluation system shall be developed.

Suggestion/Observation: This seems to be a huge task to be undertaken. It would be helpful if the policy provides more details on who will be entrusted with this task and how it must be adopted by schools. Specific time bound targets will enable faster progression towards this goal.


Clause description: Training of teachers about the learning needs and inclusion of diverse learners should be taken on priority and teaching practices needs complete transformation in tune with NEP, 2020 and RPwD Act, 2016.

Suggestion/Observation: In addition to teacher training, ample resources such as resource rooms, special educators, aides, and shadow teachers must also be made available. Collaboration with CSOs and NGOs for delivering effective inclusive programs is important for CwDs particularly for children with IDDs.


Chapter 9: Accessibility


Page and Clause number: Pg. 55, 9.12. Accessibility in transportation

Clause description: Efforts will be made to promote accessible passenger car for PwDs and accessible cab facilities will be made available at the airports, railway stations, bus stops etc. Drivers of such vehicles will be sensitized and trained about the needs of PwDs.

Suggestion/Observation: This is in line with the provisions of the RPWD Act. There must be some legal action and legal aid provided to parents and caregivers to enforce this right against private and public transport.


Clause description: The Ships vessels, ports, dockyards, jetties, and inland water terminals will have accessibility features on the principle of universal design for seamless use by PwDs All mobile apps which are relevant for use of public in general should comply with accessibility standards. All TV content, films, documentaries, and videos will have sign language interpretation or close captioning facilities for persons with hearing impairment and audio description for persons with visual impairment.

Suggestion/Observation: These are steps in the positive direction. But specifics on how to implement and who would be in charge of implementing, accompanied by rigorous time line for compliance will drive implementation.


Chapter 11: Social Security


Page and Clause number: Pg. 65, 11.9. Coverage under social security programs

Clause description: States/UTs to consider universal coverage of PwDs under disability pension scheme subject to their economic capacity and development.

Suggestion/Observation: Disability pension schemes must be included also include persons who have been disabled at work or in their occupation or due to disease during their productive years.

Clause description: Developing schemes by States/UTs for providing caregiver allowance and other support services for persons with high support needs.

Suggestion/Observation: The clause must expressly include the support for the family and children of PwDs who have acquired disability in later years and are unable to be employed at prior potential. Tax benefits such as child tax credits can be given to families who have children under the age of 18 and for single parents with disabilities.


Chapter 14: Other Policy Measures


Page and Clause number: Pg. 85, 14.1.5. Disability Data Management

Clause description: DEPwD should be given access to all the above databases.

Suggestion/Observation: In addition to access being given to the DEPwD, there must be public access to data for researchers, practitioners, and other policy makers. Given the different ministries handling different data sets, there must be a mechanism for the databases to talk to each other even if they are being maintained as separate databases.


Page and Clause number: Pg. 91, 14.5.8.Funding

Clause description: State Governments and local authorities need to earmark sufficient funds for the disability sector every year keeping in view the fact that welfare of persons with disabilities is their primary responsibility.

Suggestion/Observation: Funding must be transparent i.e., allocation and utilization must be declared and well documented per scheme. This will allow for better fund flow for PwDs.


Clause description: All the States/UTs need to set up State Fund and popularize the fund for receiving donation from the public for utilizing the same in schemes and programmes meant for PwDs.

Suggestion/Observation: Similar to the National PM Relief Fund, earmarked funds for disability may be created to attract CSR and other income tax deduction eligible donations. 

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