Context: Union Cabinet has approved the creation of an autonomous body, Mera Yuva Bharat (MY Bharat) to serve as an overarching enabling mechanism powered by technology for youth development and youth-led-development and provide equitable access to youth to actualise their aspirations and build Viksit Bharat across the entire spectrum of Government.
About Mera Yuva Bharat (MY Bharat)
MY Bharat is an autonomous body which will benefit the youth in the age group of 15-29 years, in line with the definition of 'Youth' in the National Youth Policy.
In case of program components, specifically meant for adolescents, the beneficiaries will be in the age group of 10-19 years.
MY Bharat will help in setting the focus of Government on Youth led development and make youth 'active drivers' of development and not merely 'passive recipients'.
It will function under the Ministry of Youth Affairs and Sports and will be launched on National Unity Day on 31st October 2023.
Mera Yuva Bharat supported by a technology platform would help to increase the Youth outreach efforts of the Department of Youth Affairs
Objective of Mera Yuva Bharat
Primary objective of Mera Yuva Bharat is to make it a whole of Government platform for youth development.
Under the new arrangement, with access to resources & connection to opportunities, youth would become community change agents and nation builders allowing them to act as Yuva Setu between Government and citizens.
(a) Leadership development in the youth
Improve leadership skills through experiential learning by shifting from isolated physical interaction to programmatic skills.
Investing more in youth to make them social innovators, leaders in the communities.
Setting the focus of Government on Youth Led development and to make the Youth active drivers of development and not merely 'passive recipients'.
(b) Better alignment between youth aspirations and community needs
(c) Enhanced efficiency through Convergence of existing programmes.
(d) Act as one stop shop for young people and ministries.
(e) Create a centralised youth data base.
(f) Improved two-way communication to connect youth government initiatives and activities of other stakeholder that engage with youth.
(g) Ensuring accessibility by creating a phygital ecosystem:
Need for Mera Yuva Bharat
India's youth are to play a defining role building India as developed country under Vision 2047. This requires a framework that can bring rural youth, urban youth and Rurban youth under a single platform. The existing schemes of Department were designed and launched at different points in time over the last 50 years with the then prevailing understanding of needs of rural youth in our society. The dynamic shifts in the urban-rural landscape have necessitated a re-evaluation of these approaches.
Need to establish a new contemporary technology led platform for Government to engage with present day youth: A technology driven platform can connect youth to programs that can help them improve their capabilities and connect them with community activities.
Ensuring accessibility by creating a phygital ecosystem: Mera Yuva Bharat would help to create and sustain such a phygital eco-system that connects millions of young people in a network seamlessly.
Context: Law commission has recently come up with Report #283 Titled: Age of Consent Under the Protection of Children from Sexual Offenses Act, 2012, in which it has advised against changing the present age of consent under POCSO act which is 18 years. (Section 2(1)(d) of POCSO act defines: “child” means any person below the age of eighteen years.)
Issues related to Age of Consent under POCSO Act
POCSO imposes a mandatory minimum sentence of 10 years for statutory rape without regard to minor’s (16-18) consent (POCSO is a gender-neutral act).
POCSO Act, 2012 has led to the increase in age of consent from 16 to 18 years. This has increased the number of prosecutions of adolescents for indulging in consensual sexual activities among minors.
This has following concerns:
Leads to shame and stigma associated with criminalization of consensual sexual activity.
While these cases do not necessarily lead to conviction, the stringent law results into denial of bail and prolonged incarceration.
Most people adversely affected with this provision are youth from poor and marginalized population, with adverse consequences particularly for girls.
A study by UNICEF India conducted in WB, Assam and Maharashtra found that one is every four cases under the POCSO Act constituted “romantic cases” and consensual relationships.
Often when the children (below 18) who elope or marry, the male partner is sent to jail and the women is usually pushed towards a life of poverty and destitution (observed in Veekesh Kalawat vs State of MP)
State has no obligation under POCSO to provide basic minimum required for survival of the female and/or her child.
Existing age of consent (18 years) should not be tinkered due to dangers of child abuse, trafficking, and prostitution.
Consent can be manufactured, thus a lot of genuine cases falling under POCSO might not see trial on account of agencies declaring them to be cases of consensual romantic relationships.
In many cases, “consent” arises after the occurrence of alleged offence, thus reducing age of consent can provide escape to child abusers.
Can lead to negative fallout on fight against child marriages.
Emerging trends of grooming and cybercrimes such as sextortion against women, increase vulnerability of children to sexual exploitation necessitate a need for stringent protection.
Provide a gateway to abuse of law leading to coercion of minor girls into subjugation, marital rape, and trafficking.
Way forward/Suggestion
Law Commission has suggested for introducing guided judicial discretion to deal with situation in case where there is tacit approval on part of child aged between 16 to 18 years.
However, scholars have emphasized placing the child at the center while formulating laws, while POCSO serves protection of young from sexual abuse, equally important is to protect young from being shamed, punished and jailed for exploring what is developmentally appropriate for their age.
Age-appropriate sexuality education should be given in schools.
Access to confidential medical counselling.
Prohibiting laws from criminalizing consensual sexual activity with peers.
Courts to address these matters with sensitivity and increased public dialogue.· “Close-in age” exception in case of consensual relationships as followed in USA and Canada can be looked into.
Context: The Ministry of Education released draft guidelines known as UMMEED (Understand, Motivate, Manage, Empathise, Empower, Develop), for schools to prevent suicide among students.
Reason for increasing cases of suicides among students
Suicide is a complex interplay of personal and social factors, which is rarely caused by a single circumstance or event. It has an impact on the family, school and community at large.
Students go through many transitions during their school life which can cause extreme stress, for example, transition from home to school, from one school to another, school to college, losing a parent/sibling/friend/near and dear one, etc.
Also experience changes as they progress through the developmental stages, leading to concerns such as those related to physical changes and appearance, peer pressure, career decisions, academic pressure, and pressuring students into preparing for competitive examinations.
Negative school environment like negative relationships with peers/teachers, discrimination, bullying, harassment, humiliation, isolation, etc.
Absence of school-family connects, parental neglect/ abuse, lack of acceptance/recognition by family members, family history of suicide, Criticism/ bullying by family members .
Warning Signs of Students at Risk
Feelings: Hopelessness, guilt, shame, self-hatred, exhaustion persistent sadness among students.
Behaviours: Withdrawal from Social Interactions, friends, classmates, and family, lack of concentration such as being absent-minded, forgetful, and/or restlessness in class, sudden, mood changes, change in appetite/sleeping patterns.
Actions: Lack of Participation, losing interest in previously enjoyed school activities, being careless about safety, use of substances (smoking, alcohol, etc.), decline in overall quality of academic and other school work and becoming detached.
About UMMEED
To serve as directions to schools for enhancing sensitivity, and understanding, and providing support in case of reported self-harm.
Guidelines have been issued under the National Education Policy (NEP), 2020, which aims for holistic education, encompassing cognitive and emotional development.
Taking proactive steps to identify students exhibiting warning signs and thereby at risk for self-harm, creating a dedicated team in school, promoting a supportive school environment, and building the capacity of the stakeholders
Plan of action for schools
Setting up of School Wellness Team (SWT): This may be formed under the leadership of the School Principal, where each member of SWT is oriented in handling crises.
When a student displaying warning signs has been identified by any stakeholder, they need to be reported to the SWT, which takes immediate action.
It plays an important role in the implementation of school activities directed towards creating awareness about mental well-being, leading to suicide prevention.
It is important for the school to review the effectiveness of SWT and its functioning on an annual basis.
Promoting a positive school environment: To be prepared to respond to a crisis, it is also important to promote and strengthen the protective factors and reduce the risk factors.
It plays a pivotal role in supporting student well-being and reducing the risk of suicide. Raising awareness about mental health is an integral part of it.
It promotes open dialogue, which can reduce the stigma associated with seeking help and encourage students to reach out for support without fear of judgment or isolation.
Actions for promoting a positive school environment:
Encouraging peer support: Through group activities, clubs, events, etc.
Organising activities regularly for relaxing/reducing stress: Like yoga, meditation, art, music, etc.
Providing channels for expression: Such as access to a trained counsellor, help boxes, or suggestions boxes to express concerns and seek help.
Compiling resources to seek support: Helpline numbers, phone numbers and email IDs of Counsellors and SWT members, brochures and pamphlets on causes, risk factors, protective factors, warning signs, etc.
Integrating Mental Well-being in School Functioning: Including aspects of mental well-being in daily interactions, open discussions, assembly time, different programmes, subject-teaching, etc.)
Creating a Safe Environment in School and Beyond: In school: Locking empty classrooms, lighting up dark corridors, cleaning gardens and areas with excess growth of grass and places beyond school: vigilance at railway tracks, river banks, bridges, cliffs, medical shops, etc.
Encouraging School-Community Partnerships: Among all stakeholders: school administrators, teachers, counsellors, students, medical staff, supporting staff, parents, and community.
Building Awareness about Mental Well-being among all Stakeholders: Through Role plays, Storytelling, Nukkad natak, Rallies, Posters, Exhibitions, Annual Day themes, etc.)
Building capacity for different stakeholders to prevent suicides and respond to crises in schools, it is crucial to empower all stakeholders, including teachers, staff, students, and families.
Responding immediately and supporting students at risk: Immediate action is required in both situations of at-risk behaviours, i.e., when the student is displaying warning signs and attempting self-harm through maintaining records of at-risk behaviours of a student and follow-up on the student and SWT members need to connect with parents after the incident to follow up on the student.
They divided warning signs into three categories– feelings, behaviour and actions.
Students who exhibit feelings of hopelessness, helplessness, worthlessness, guilt and shame, or have a lack of concentration, withdrawal from social interactions and sudden mood swings are at risk.
They also place students with reckless behaviour, talking about self-harm or ending life and becoming detached, among others, as those displaying warning signs.
Appraisal of actions taken by the school: Schools should conduct regular assessments to reflect on their suicide prevention efforts. SWT and other stakeholders should meet periodically to discuss their experiences in implementing guidelines and analyse feedback for areas needing improvement.
Context: The United Nations Population Fund, India, has released the “2023 India Ageing Report,” which projects a significant increase in the elderly population in India.
The report used data from the 2011 Census, the 2017-18 Longitudinal Ageing Survey in India (LASI) conducted by the Health Ministry, population projections of the Government of India and the World Population Projection 2022 report.
Key findings and implications of the report
Estimated a decadal growth rate of 41% for the elderly population in India and by 2050, the elderly population will make up over 20% of India's total population.
By 2046, it is expected that the elderly population will surpass the population of children aged up to 15.
More than 40% of India's elderly population is in the poorest wealth quintile, and around 18.7% of them live without any income such levels of poverty may affect their quality of life and healthcare utilisation.
Women, on average, had higher life expectancy at the age of 60 and at 80, when compared to men with variations across States and Union Territories.
In Rajasthan, Haryana, Gujarat, Uttarakhand, Kerala, Himachal Pradesh, and the Union Territory of Jammu & Kashmir, women aged 60 can expect to live more than 20 additional years.
Since 1991, the elderly sex ratio (females per 1,000 males) has been rising consistently, except in Union Territories and western India.
Poverty is gendered in old age, with older women more likely to be widowed, living alone, and dependent on family support.
There was a significant inter-state variation in absolute levels and growth of the elderly population as well, reflecting the different stages and pace of demographic transition across States.
Most States in the southern region and select northern States such as Himachal Pradesh and Punjab reported a higher share of the elderly population than the national average in 2021, a gap that is expected to widen by 2036.
The report also notes that increasing life expectancy and declining fertility rates are contributing to a global trend of ageing populations.
This trend is not unique to India but is observed worldwide, which will have implications for countries across the globe.
Challenges faced by the elderly population
Ruralisation of Elderly Population: According to the Census of India 2011, on average, 71 per cent of older persons live in rural areas, with significant interregional variation, ranging from 62–63 per cent in the west and south to 78–80 per cent in the east, north and north-east.
Feminisation of Elderly Population: Women living longer than men resulting in higher levels of widowhood and associated socio-cultural and economic deprivations and dependencies.
Economic challenges: More than 40% of India's elderly population is in the poorest wealth quintile, and around 18.7% live without income, making it hard for them to have a good life and get the healthcare they need.
Income insecurity is one of the major causes of vulnerability especially in old age. 47% share of elderly women who never worked in the past. Around 33 per cent of the older females have never worked and do not have any income
Disease prevalence: Over 30 per cent of the elderly women and 28 per cent of the men suffered from one chronic morbid condition and nearly one-fourth (across both sexes) suffered from more than two morbid conditions. With the increasing age, the share in such conditions gradually increased in the cohort.
Depression: Mental illness arising from senility, showing poor mental ability because of old age and neurosis.
Depression was observed to increase with age in approximately 8% of older individuals, and it was more prevalent among elderly women than men.
Less awareness and hindrance in receiving social security schemes: Only 29 % of the elderly benefit from various social security schemes.
Only 24% of widowed women in BPL households receive benefits from the Indira Gandhi National Widow Pension Scheme (IGNWPS).
Around 7 % of elderly women do not have proper documents to avail the benefits of IGNWPS.
Around 47% of elderly widows believe that they are not eligible to get benefits under IGNWPS.
Recommendations
Recommendation given by Mohini Giri committee: Women and men age differently. Both have their concerns. Elderly women and their problems need special attention like
Advancements in medical technology medicine and in technology for assistive living (and technology),
Mainstream senior citizens, especially older women, bring their concerns into the national development debate with a priority to implement mechanisms already set by governments and supported by civil society and senior citizens associations.
Promote the concept of "Ageing in Place" or ageing in own home, housing, income security and homecare services, old age pension and access to healthcare insurance schemes and other programmes and services to facilitate and sustain dignity in old age.
Government must work on increasing awareness about schemes for older persons, bring all Old Age Homes under regulatory purview and focus on facilitating in-situ ageing to the extent possible.
Government to encourage the creation and running of elderly self-help groups, and stressed the importance of having elderly people live in multigenerational households.
Government should encourage in situ (at home) ageing as much as possible by creating short-term care facilities like creches or day-care facilities, citing better care when elderly people live with their respective families.
The enhancement of geriatric care to cater to the unique healthcare needs of seniors.
A multitude of government schemes and policies addressing the health, financial empowerment, and capacity building needs of the elderly population.
Community-based organizations actively engaged in digital empowerment through computer and internet usage sessions.
Ministerial committees dedicated to shaping policies for elderly welfare.
Corporate efforts for joyful aging, social assistance, old age homes, and elder abuse awareness campaigns.
Addressing these challenges often requires a combination of family support, community resources, healthcare services, and public policy initiatives to ensure that the elderly population can age with dignity and quality of life.
Context: Women's Reservation Bill was introduced in the Parliament for providing 33% reservation of women in Lok Sabha and State Assemblies.
What is Women Reservation Bill ?
The Women’s Reservation Bill proposes to reserve 33% of seats in the Lok Sabha and State Legislative Assemblies for women.
Features:
The allocation of reserved seats shall be determined by such authority as prescribed by Parliament.
One third of the total number of seats reserved for Scheduled Castes and Scheduled Tribes shall be reserved for women of those groups in the Lok Sabha and the legislative assemblies.
Reserved seats may be allotted by rotation to different constituencies in the state or union territory.
Time line
For the first time in 1996 ,it was introduced in the Lok Sabha as the 81st Amendment Bill by the then Deve Gowda led United front government . Bill failed to get approval in the house and was referred to a joint parliamentary committee. JPC submitted its report, however bill lapsed with the dissolution of the Lok Sabha.
In 1998 , the bill was again introduced by the Atal Bihari Vajpayee led NDA government, but in absence of required support it again lapsed.
The Bill was subsequently reintroduced in 1999, 2002 and 2003, but failed to pass due to lack of majority.
In 2008, bill was again introduced as 108th constitution Amendment Bill. It was passed in Rajya Sabha but eventually lapsed after dissolution of the 15th Lok sabha.
Despite the promises made in election manifesto of 2014 as well as 2019 , there is no development in this regard as such.
How many women are in Parliament?
About 14% of the members in Indian Parliament are women, the highest so far. According to the Inter Parliamentary Union, India has a fewer percentage of women in the lower House than its neighbours such as Nepal, Pakistan, Sri Lanka and Bangladesh — a dismal record.
Arguments in favour of the Bill
Affirmative action is imperative to better the condition of women since our society in general and political parties in particular are inherently patriarchal.
Despite the belief of the constituent assembly that every section would be represented proportionally, women are still under represented in Parliament.
Reservation to women would ensure a strong lobby arguing for issues that are being conveniently ignored.
Reservation at panchayat level have shown positive results, despite being termed as rubber stamp (*in some cases) , women’s are more likely to invest in goods which are crucial for women and children.
The prevalent social tribulations like crime against women, skewed sex ratio, low LFPR and poor health indices require more women in the roles of policy and decision making.
Arguments against the Bill
Opponents argue that it would perpetuate the unequal status of women since they would not be perceived to be competing on merit.
They also contend that this policy diverts attention from the larger issues of electoral reform such as criminalisation of politics and inner party democracy.
Reservation of seats in Parliament restricts choice of voters to women candidates.
Rotation of reserved constituencies in every election may reduce the incentive for an MP to work for his constituency as he may be ineligible to seek re-election from that constituency.
Women’s interests cannot be isolated from other social, economic and political strata.
To Conclude
To start with, some proponent suggest that reservation should be provided for women in political parties.
Some has also suggested to have dual member constituencies (where constituencies will have two MPs, one of them being a woman).
Until and unless women are not a part of the policy making process, they cannot raise their voice for fellow women. This would result in a vicious cycle with this debate continuing for centuries. So, this is high time to finish this visible and unsaid inequality. Democracy cannot live a long life in an unequal society.
Context: Recently Ministry of Social Justice and Empowerment has reported that 508 districts in the country are free of manual scavenging.
What is manual scavenging?
Manual scavenging is the practice of removing human excreta by hand from sewers or septic tanks.
In 2013, the definition of manual scavengers was also broadened to include people employed to clean septic tanks, ditches, or railway tracks.
Why is manual scavenging still prevalent in India?
The lack of enforcement of the Act
The exploitation of unskilled labourers.
Caste-based occupation and discrimination.
Consequences of Manual Scavenging
Many people lose their lives while cleaning septic tanks every year for example, On May 11, 2019, three men in their 20s were killed after they inhaled toxic fumes while cleaning a septic tank at a housing society in Thane.
People engaged in manual scavenging are illiterate and they lose the chance to get any other meaningful skill.
When young people died, their families become more vulnerable to economic and social discrimination.
Family of manual scavengers get trapped in the vicious cycle of poverty and social discrimination.
Steps were taken to eliminate manual scavenging
India banned the practice under the Prohibition of Employment as Manual Scavengers and their Rehabilitation Act, 2013 (PEMSR).
The Act bans the use of any individual for manually cleaning, carrying, disposing of or otherwise handling in any manner, human excreta till its disposal.
The Act recognizes manual scavenging as a “dehumanizing practice,” and cites a need to “correct the historical injustice and indignity suffered by the manual scavengers.”
A campaign has been launched by Ministry to machine sewers and septic tanks in 243 cities.
A helpline was created under the same campaign to register complaints if manual scavenging is reported.
Concerns over implementation
The biggest issue is, the government has not yet identified the people involved in manual scavenging.
There is no mechanism to decide who will receive the machines, who will monitor them and who will be held accountable for the implementation.
Lack of adequate mechanics of rehabilitation of manual scavengers.
Caste-based discrimination prevents them from entering other occupations.
Due to p[oerverty and illiteracy they are not in a position to get skill training.
Way forward
Improve literacy rate and quality of education at grass root level in government schools because the lower caste people don’t have the resources to afford private education.
Provide meaningful employment at the local level so that their bargaining power can be improved.
Strict action should be taken against those who violate the Prohibition of Employment as Manual Scavengers and their Rehabilitation Act, 2013 (PEMSR).
The mechanisation of cleaning of sewer and septic tanks in mission mode.
Context: Rehabilitation Council of India (RCI) is conducting a seminar to facilitate the effective implementation of the National Education Policy and human resource development specifically targeting the empowerment of persons with disabilities.
About Rehabilitation Council of India
Rehabilitation Council of India (RCI) is a statutory body established by the Rehabilitation Council of India Act, 1992.
The body functions under the Department of Disability under Ministry of Social Justice & Empowerment.
Main mandate of RCI is to standardise, regulate and monitor training programs in the field of special education and disability and prescribe minimum standards of education and training for 16 categories of professionals and personnel allocated for RCI.
Objectives of Rehabilitation Council of India
Regulate & monitor training programs in the field of disability rehabilitation & special education.
Prescribe minimum standards of education & training for various categories of human resources dealing with persons with disabilities.
Regulate these standards in all training institution to bring about uniformity throughout India.
Make recommendations to the Ministry regarding recognition of qualification granted by Training Institution, Universities etc. in India for rehabilitation professionals/personnel.
Make recommendations to Ministry regarding recognition of qualification granted by institution outside India under the scheme of reciprocity.
Maintain Central Rehabilitation Register (CRR) of persons possessing recognised rehabilitation qualification.
Encourage continuing rehabilitation education program at approved institution.
Promote research in disability rehabilitation and special education.
Functions of Rehabilitation Council of India
Qualifications granted by any University or other institution in India that are included in the schedule shall be recognised qualifications for rehabilitation professionals/personnel.
Registration of Rehabilitation Professionals/Personnel in the Central Rehabilitation Register (CRR) of persons possessing the recognised qualifications.
Prescribe the minimum standards of education required for granting recognised rehabilitation qualification by Universities/Institutions of India.
Prescribe standards of professional conduct, etiquette and code of ethics for rehabilitation professional/personnel.
Assess & grant approval to institution/universities for training of professionals in the field of rehabilitation and to facilitate their recognition and its withdrawal by Government.
Appoint visitors to inspect any University or Institution where education for rehabilitation professional is given or attend any examination for the purpose of granting recognised rehabilitation qualifications.
16 Categories of Rehabilitation Professionals/Personnel covered under RCI Act
Context:The National Human Rights Commission (NHRC) has taken Suo moto cognisance of media reports about the deaths of seven sanitation workers in two different incidents in Jhajjar and Bharuch districts of Haryana and Gujarat, respectively on April 4.
Manual scavenging is the practice of removing human excreta by hand from sewers or septic tanks. India banned the practice under the Prohibition of Employment as Manual Scavengers and their Rehabilitation Act, 2013 (PEMSR). The Act bans the use of any individual for manually cleaning, carrying, disposing of or otherwise handling in any manner, human excreta till its disposal.
Major features of Prohibition of Employment as Manual Scavengers and their Rehabilitation Act, 2013
The Act prohibits the employment of manual scavengers, the manual cleaning of sewers and septic tanks without protective equipment, and the construction of insanitary latrines.
It seeks to rehabilitate manual scavengers and provide for their alternative employment.
Each local authority, cantonment board and railway authority is responsible for surveying insanitary latrines within its jurisdiction. They shall also construct a number of sanitary community latrines.
Each occupier of insanitary latrines shall be responsible for converting or demolishing the latrine at his own cost. If he fails to do so, the local authority shall convert the latrine and recover the cost from him.
Offences under the act shall be cognizable and non-bailable.
Reasons for persistence of Manual scavenging:
Narrow definition of Manual scavengers:
Under the act, “manual scavenger” means a person engaged or employed, at the commencement of this Act or at any time thereafter, by an individual or a local authority or an agency or a contractor, for manually cleaning, carrying, disposing of, or otherwise handling in any manner, human excreta in an insanitary latrine or in an open drain or pit into which the human excreta from the insanitary latrines is disposed of, or on a railway track or in such other spaces or premises, as the Central Government or a State Government may notify, before the excreta fully decomposes in such manner as may be prescribed, and the expression “manual scavenging” shall be construed accordingly.
- The definition of manual scavengers as per the Act above is narrow and excludes a wide variety of work done by diverse people in terms of numbers employed, gender, and location. The current definition describes them as a single amorphous category, but leaves out other types of sanitation work such as drain cleaning or even the cleaning of toilets by domestic help; septic tank cleaners, sewage treatment plant workers. (It excluded many sanitation workers)
- a person engaged or employed to clean excreta with the help of such devices and using such protective gear, as the Central Government may notify in this behalf, shall not be deemed to be a „manual scavenger.
Inadequate rehabilitation: Though the act mandated rehabilitation of manual scavengers, they were unable to take up non-sanitation related occupations due to social stigma attached to them. Even the mechanisation of sanitation work had little impact as the underlying issue of sanitation work being a caste-based occupation will not be tackled by making descendants of manual scavengers continue the same work in a different form. So, mechanisation can only save them from health risks but may not address the stigma or results in occupational mobility
Lack of legal responsibility on the government: Neither the state nor the centre is mandated under the Bill to provide financial assistance for the conversion of insanitary latrines. This adversely impact implementation of the act.
Failure of swatch Bharat to eradicate manual scavenging: Toilets that are built under SBM are mainly pit based toilets that are not linked to the sewer network. As long as households remain unconvinced about or unmotivated to construct twin pit latrines, the risky work of manual scavenging (performed largely by Dalits) is likely to continue.
A technical solution to a social problem will have limited impact.
Context: Central government has given full exemption from basic customs duty on all drugs and food for special medical purposes imported for personal use for treatment of all Rare Diseases listed under National Policy for Rare Diseases, 2021.
Customs Duty Exemption for Rare Diseases
To avail this exemption, individual importer must produce a certificate from Central or State Director Health Services or District Medical Officer/Civil Surgeon of districts.
Government has also fully exempted Pembrolizumab (Keytruda) used in treatment of various cancers from basic customs duty.
Drugs/Medicines generally attract basic customs duty of 10%, while some categories attract concessional rate of 5% or nil.
This exemption will result in substantial cost savings and provide much needed relief to patients as it is estimated that for a child weighing 10 kg, annual cost of treatment for some rare diseases may vary from Rs 10 lakh to more than Rs 1 crore per year with treatment being lifelong and drug dose and cost, increasing with age & weight.
Salient Features of National Policy for Rare Diseases, 2021
Ministry of Health & Family Welfare has launched National Policy for Rare Diseases, 2021 for treatment of rare disease patients.
Rare diseases have been identified & categorised into three groups:
Group 1: Disorders amenable to one-time curative treatment.
Disorders amenable to treatment with Hematopoietic Stem Cell Transplantation. Ex. Lysosomal Storage Disorders, Osteoporosis etc.
Disorders amendable to organ transplantation. Ex. Glycogen storage disorders.
Group 2: Diseases requiring long term/lifelong treatment having relatively lower cost of treatment & benefit has been documented in literature and annual or more frequent surveillance is required.
Disorders managed with special dietary formulae or food for special medical purposes. Ex. Phenylketonuria (PKU) etc.
Disorders that are amenable to other forms of therapy (hormone/specific drugs).
Group 3: Diseases for which definitive treatment is available but challenges are to make optimal patient selection for benefit, very high cost and lifelong history.
Sufficient evidence for good long-term outcomes exists. Ex. Gaucher Disease etc.
Disorders for which cost of treatment is very high and follow literature is not available. Ex. Cystic Fibrosis, Spinal Muscular Atrophy etc.
Centres of Excellence: Eight (08) Centres of Excellence (CoEs) have been identified for diagnosis, prevention & treatment of rare diseases. These are premier Government tertiary hospitals with facilities for diagnosis, prevention & treatment of rare diseases. For ex. AIIMS, New Delhi etc. These CoEs will be provided one time grant of upto Rs 5 crore each for infrastructure development for screening, tests, treatment etc.
NIDAN Kendras: Department of Biotechnology under Unique Methods of Management of Inherited Disorders (UMMID) initiative has supported the establishment of Genetic Diagnostic Units i.e., National Inherited Disorders Administration Kendras (NIDAN Kendras) to provide comprehensive clinical care including diagnosis, management, multidisciplinary care, counselling, prenatal testing of rare diseases.
Financial Support for patients of Rare Diseases:
Provision of financial support up to Rs 50 lakhs shall be provided to patients suffering from any category of Rare Diseases. Financial support will be provided to patients for treatment in any of the Centre of Excellence (CoE) under National Policy of Rare Diseases-2021, outside the Umbrella Scheme of Rashtriya Arogya Nidhi.
State Governments can consider supporting patients of rare diseases that can be managed with special diets or hormonal supplements or relatively low-cost interventions (Group 2 diseases).
Digital Portal for Crowd Funding and Voluntary Donations for Patients of Rare Diseases.
Prevention of Rare Diseases: Due to advancement in technologies, understanding of pathophysiological mechanism of rare genetic disorders has improved. This can done by:
Primary Prevention: Focusing on preventing birth of an affected child by avoidance of pregnancy in advanced age, or any other monogenic disorder by not marrying a carrier, carrier couples not reproducing etc.
Secondary prevention: Avoiding birth of affected fetus by prenatal screening and prenatal diagnosis, early detection of disorders and appropriate medical intervention to ameliorate or minimize manifestations of rare diseases by newborn screening.
Tertiary prevention: Provision of better care and medical rehabilitation to those rare disease patients who present at advanced stage of disease.
Manpower: States to create department of medical genetics in at least one medical college in the State for imparting education and increasing awareness.
Affordability of drug related to rare diseases:
ICMR, CSIR etc to focus on promoting R&D in the field of rare diseases for diagnostics and treatment of rare diseases.
Focus will be on development of new drugs, repurposing of drugs and use of biosimilars.
Finance Ministry to reduce customs duties on import of medicines for rare diseases.
Definition of Rare Diseases
WHO defines rare disease as often debilitating lifelong disease or disorder with a prevalence of 1 or less, per 1000 population.
However, India lacks epidemiological data to be able to define rare diseases in terms of prevalence. To overcome this, a hospital based National Registry for Rare Diseases has been initiated by ICMR by involving centres across India that are involved in diagnosis and management of Rare Disease. This will yield much needed epidemiological data for rare diseases.
Challenges with Rare Diseases
Rare diseases are very complex and heterogenous with new rare diseases and conditions being identified and reported regularly.
Issues of Diagnosis of rare diseases:
Early diagnosis of rare diseases is complex due to lack of awareness among primary care physicians, lack of adequate screening and diagnostic facilities. Traditional genetic testing includes tests that can only address a few diseases.
Lack of awareness about rare diseases in general public and medical fraternity leading to delay in diagnosis or wrong diagnosis.
Issues of R&D about rare diseases:
R&D of most of rare diseases is difficult as little is known about pathophysiology or natural history of these diseases particularly in the Indian context.
Very small patient pool with rare diseases results in inadequate clinical experience and less research focus.
Challenges in treatment:
Effective or safe treatment is not available for most rare diseases. Of the 7000-8000 rare diseases, less than 5% have therapies to treat them.
Cost of treatment of rare diseases is prohibitively expensive.
Lack of epidemiological data: Data regarding rare diseases are not collected effectively in India which impedes understanding the extent of burden of rare diseases and development of a definition.
Economic burden: Rare diseases place a major economic burden on resources of country.
Suggestions for Rare Diseases
Definition of Rare Diseases: Currently, the definition of rare diseases is mostly prevalence based. There is a need to move beyond which focuses on regional specificity, rarity, severity and study ability of the disease.
Expanding genetic testing: Expanding genetic testing based on next generation sequencing or chromosomal microarray which are expensive and time-consuming process with interpretation and counselling issues at times.
Increasing awareness: There is an immediate need to create awareness amongst public, patients and medical fraternity for early and accurate diagnosis, standardisation of diagnostic modalities and newer diagnostic and therapeutic tools.
International & regional collaborations for research, collaborations with physicians working of rare diseases and with patient groups and their families. This will lead to better understanding about pathophysiology of rare diseases and access to wider patient pool.
Incentives for Orphan drugs: On the lines of Orphan Drug Act in USA & Canada, India’s drug makers should incentivise drug makers to manufacture drugs for rare diseases.
Prevention: Focusing on developing infrastructure by newborn screening, prenatal diagnosis and prenatal screening especially in children whose families have a history of rare diseases.
Epidemiological data: Epidemiological data should be collected at Centre of Excellence and share with ICMR.
About Rashtriya Arogya Nidhi (RAN)
This scheme is being implemented by Ministry of Health and Family Welfare to provide financial assistance to patients, living below poverty line and who are suffering from major life-threatening diseases, to receive medical treatment at any super speciality hospitals/institutes or other government hospitals.
Financial assistance is released to such patients in the form of ‘one-time grant’, which is released to the Medical Superintendent of Hospital in which the treatment has been/is being received.
Under RAN Revolving Funds have been set up in 13 Central Government Hospitals/Institutions, located all over India for providing financial assistance for treatment up to Rs 2 lakh. In addition financial assistance is provided for individual cases referred by Government hospitals/institutions, which do not have a Revolving Fund and for cases referred by 13 Government hospitals/institutions with Revolving Funds for assistance exceeding Rs. 2 lakh.
The Rehabilitation Council of India (RCI) was set up as a registered society in 1986.
Statutory status of RCI
On September 1992 the RCI Act was enacted by Parliament and it became a Statutory Body on 22 June 1993. The Act was amended by Parliament in 2000 to make it more broad-based.
to standardise syllabi and to maintain a Central Rehabilitation Register of all qualified professionals and personnel working in the field of Rehabilitation and
Special Education.
The Act also prescribes punitive action against unqualified persons delivering services to persons with disability.
What are the statutory rights of the people who need medical rehabilitation?
Service by a qualified and trained rehab professional who has been registered by the Council.
Maintenance of a certain standard of professional conduct by the rehabilitation providers. If not met, then the professionals face disciplinary action and even removal from RCI.
Guarantee that all rehabilitation professionals are under the regulation of a statutory council, which comes under the preview of the central government.
Issues associated with rehabilitation in India
Non-compliance with standards.
Limited access to assistive devices. For example, hearing aid distributors found that the current production level of hearing aids only meets 10% of the worldwide need. In developing countries, that number is reduced to 3%! Of all the people who require hearing aid in countries like India and Africa, only 3% get them. Limited access to assistive devices leads to:
Deterioration in health
Restricted activity
Constraint with Participation
Increased dependency
Reduced quality of life
Rehab centres are limited to urban areas like Chennai. This centralisation and concentration of medical rehabilitation have left tier 2 and 3 cities with inadequate access to services.
Another issue in India is the insufficient rehabilitation personnel with appropriate training and experience. The lack of proper physiatrists is a significant hurdle physical medicine and rehabilitation have to overcome.
What is the Way forward?
More investment and financing are required so that every person in the nation can get easy access to rehab facilities.
The supply and capacity of personnel need to be amplified. For this, education and training are a must; followed by recruitment and retention.
The delivery of rehabilitation services must be integrated with the current healthcare system. For example, by coordinating with a hospital in Chennai, we are able to deliver crucial help to dozens of patients each year. It ensures early intervention which leads to more recovered patients.
The last but not least step required to make the lives of those who live with disability better is assistive technology. More local manufacturing, reduction in taxes and good follow-up can make a world of difference.
In recent times, there has been increasing demand for delisting of tribal communities, from the list of Scheduled tribes under Article 342 of Constitution, who have converted to other religions, primarily Christianity. This has raised debate over the criteria followed by the government to designate a community as a scheduled tribe.
Union Ministry of Tribal Affairs established a task force under the leadership of erstwhile Tribal Affairs secretary Hrushikesh Panda in 2014. Panda committee compiled a list of over 40 communities from India that should be included in Scheduled Tribe List on a priority basis. (26 Tea-tribes, 9 from Odisha, 8 from Chhattisgarh, few from Andhra Pradesh and Tamil Nadu).
Salient features of Tribes
An amalgam of the various traits ascribed to tribal groups include:
Tribes have a segmentary but egalitarian system.
They are not mutually inter-dependent, as are castes in a system of organic solidarity.
Absence of complex political structures
Endogamy
Strong and functional kinship bonds, cooperation
Territorial integrity
Cultural and linguistic distinctiveness
Lower levels of technology
Sustained by relatively primitive subsistence technology such as shifting cultivation, hunting, and gathering
Many tribes follow Animism as a form of religion
TRIBE
CASTE
Egalitarian
Hierarchy
Segmentary
Organic
Communal ownership of resources
Individual ownership
Endogamy to preserve tribal identity
Endogamy based on the purity-pollution principle
EXISTING CRITERIA AND PROCESS
Existing criteria followed by the government for the specification of a community a scheduled tribe as defined by the Lokur committee (1965) are:
Indications of primitive traits,
Distinctive culture,
Geographical isolation,
Shyness of contact with the community at large, and
Backwardness.
These are not mentioned in the Constitution.
PROCEDURE FOR LISTING COMMUNITIES AS SCHEDULED TRIBES
STEP-1:Representations are received by State Governments or Union Ministry of Tribal Affairs for inclusion/exclusion of any community in/from the list of Scheduled Tribes of a State/UT under Article 342 of Constitution.
STEP-2: State government or UT administration needs to first recommend and forward the proposal to the Union Ministry of Tribal Affairs. If the State Government or UT Administration does not recommend the community’s case for inclusion will die down.
STEP-3:After State government/UT administration has recommended for inclusion of the community in ST list, Union Ministry of Tribal Affairs forwards the proposal to Registrar General of India (RGI). If the RGI is not satisfied, the case for inclusion ends.
STEP-5: After the consent of the NCST recommendation, the proposal is taken to Union Cabinet for its consent.
STEP-6: After the consent of the NCST, the matter is taken up by the Parliament in the form of a bill to amend the Presidential Order issued under Article 342 of the Constitution, which lists the scheduled tribes in each State and UT.
ISSUES WITH PRESENT CRITERIA FOR SCHEDULING
Transition and Acculturation: Over the period, tribal communities have been undergoing the processes of transition & acculturation due to impacts of planned change, modernization & globalization. Tribes do show some distinctness in their culture but the regional variations cannot be ruled out due to acculturation influence of adjoining populations. Most tribes got converted to mainstream religions like Hinduism and Christianity.
Issues with Isolation: Migrations in India were frequent for political, economic and ecological reasons. Even the most isolated groups were part of a wider network of economic relations. There are only a few tribes, which are isolated like the Jarawa and the Sentinelese in Andaman and Nicobar Islands.
Problematic Idea of ‘Primitiveness’: The term "primitive" has been challenged as a value-loaded term indicating a condescending attitude by outsiders. Besides, the so-called primitivity is a stage in evolution of a community through which all communities have passed or passing. The tribals themselves resent being called primitive.
Reasons identified by Panda Committee why some communities are not included as STs:
Some existing communities who form sub-sets among the existing Scheduled Tribe have not got benefit of Scheduled Tribes.
Phonetic Variations: Some communities are known by names which have little phonetic or spelling differences with existing ST tribes.
Bifurcation of States: Few communities were left out when States were bifurcated i.e., they were included as ST in one state and left out of ST list in other state.
Due to forced migration: There are communities who were denied inclusion in ST list, as they were forcibly taken away from their homelands as indentured labour to other states or were displaced due to industrialisation, where they were left out of the ST list. Thus, there is a need to differentiate between voluntary migration and forced displacement and thus, these communities should be included in ST List. Ex. Tea Tribes of Assam who were forcibly taken as indentured labourers from Bihar, Jharkhand, Odisha to Assam. Tribes who have had to be resettled from one state to another due to hydropower and irrigation projects on Narmada River affected STs in Madhya Pradesh.
If these outdated criteria are still going to be adopted, there may be hardly few communities to qualify for ST status and many of the existing ST communities will lose their ST status. Hence, there emerges the need to revisit the existing criteria so that apparent historical injustice can be addressed practically and contextually. A more flexible criterion should be adopted for this purpose, rather than following a rigid and dogmatic approach.
ISSUES WITH CURRENT PROCUEDURE FOR SCHEDULING
Procedure for inclusion of communities defeats Constitution agenda for affirmative action and inclusion is cumbersome and time consuming.
The proposal must get consent of States government/UT administration, Registrar General of India, National Commission for Scheduled Tribes, Union Cabinet and Parliament. If the proposal is defeated at any one spot it is rejected.
Office of Registrar General of India lacks expertise of Anthropologists and sociologists to comment on proposals for exclusion and inclusion of community into ST list.
Registrar General of India has not created a databank on tribes/castes based on ethnographic study/surveys. This limits the ability to do justice to identifying communities as STs.
RGI’s decision is based on census records. However, there are inconsistencies in the census records. For ex. Census 1891 listed tribes as ‘Tribal religion’, 1901 and 1911 census described them as ‘Tribal animists’, 1921 census included them under ‘Hill and forest tribes’, 1931 census described them as ‘primitive tribes’ and 1941 census as ‘tribes’. After Census 1951, they are under the constitutional category of Scheduled Tribes.
PROPOSED CRITERIA FOR INCLUSION OF NEW COMMUNITIES IN ST LIST
The following criteria points are proposed for consideration by National Commission for Scheduled Tribe and must be looked at from a holistic perspective, rather than as an isolated criterion. These criteria have been suggested by Hrushikesh Panda Committee. All the following criteria should be looked at holistically and none should take precedence over another.
Common Community Names for Group Identityor may have different names such as sub-tribes/sections, synonyms/ phonetic variations or the name/names by which they identify themselves and the names by which their neighbours call them.
Distinct Language/Dialect which may or may not exist today. The community may be bilingual speaking own language among themselves and local/regional language to communicate with others.
Presence of a Core Culture relating to life cycle, songs, dances, paintings, folklore.
Endogamy or marital relationship primarily within their community & with other Scheduled Tribes.
Autonomous Religious Beliefs and Practices where traditional magico-religious functionaries are from the community, though practicing Hindu 'way of life' would not be a bar.
Traditional Institutions of Social Control relatively intact.
Low Level of Techno-Economy: Simple, less diversified, simple exchange of goods and services, mutual interdependence.
Relative Socio-Economic & Educational backwardness when compared to rest of population of the State.
Historical geographical isolationwhich may or may not exist today.
Reforming the procedure for inclusion:Office of RGI should merely be required to provide information available with it.
Reformed procedure: Panda Committee suggested a reformed procedure suggesting that once a proposal is received from a State government, it should be circulated simultaneously to NCST, RGI and Anthropological Survey of India (AnSI), each of which needs to give their opinions in 6 months. After opinions of the above institutions should then be considered by a special committee on Scheduling of Communities which will be headed by Tribal Affairs Secretary, and representatives from NCST, RGI, AnSI, State Governments and State Tribal Research Institute.
The Union Government on March 14 informed Lok Sabha that the Justice G. Rohini Commission which is looking into the sub-categorisation has been working without the data from the last Socio-Economic Caste Census (SECC) conducted in 2011.
Need for Caste-based Census:
Estimate change in demography: Present reservations and other welfare scheme entitlements to OBC are still based on the population estimates of 1931.
Bring about social justice: Help governments’ welfare schemes reach the most backward and deprived castes that have been marginalised till date.
Help rationalize reservation policy as per need of a specific caste or community: Land fragmentation and decades of agricultural stagnation have turned many upper caste landowners into marginal farmers. Whereas rising rural wage has benefitted some of the backward classes including Dalits.
Demand for Reservations: There has been demands to expand OBC reservation (as the present 50% cap is arbitrary) and inclusion of dominant castes like Jats, Kapus, Patidars, Marathas etc. into OBC category. Often these demands are not based on scientific evidence. Hence, a Caste based socio-economic census will bring out the real picture.
OBC Sub-categorisation: OBC membership is large and heterogeneous, with vast intra-caste differences in socio-economic conditions. Some better-off groups among OBC castes have cornered a disproportionately large share of seats reserved for OBCs giving rise to demand of sub-classification of various caste groups among OBCs. Caste based socio economic census will help in such classification.
Assess impact of Affirmative action: A socio economic caste census would help in assessing how far the extension of reservations to OBCs benefited them.
Rohini Commission:
This Commission was constituted under article 340 of Constitution with mandate is to examine issues of sub-categorization within Other Backward Classes in Central List.
Findings/suggestions:
It found that 97% of all jobs and educational seats have gone to just 25% of all sub-castes classified. And around 25% of these jobs and seats went to just 10 OBC communities.
983 OBC communities, 1/3rd of the total, had almost had zero representation in jobs and admissions in educational institutions.
Proposed to divide 27% reservation for the castes on the Central list into four sub-categories.
Rohini Commission: This Commission was constituted under article 340 of Constitution with mandate is to examine issues of sub-categorization within Other Backward Classes in Central List. Findings/suggestions: It found that 97% of all jobs and educational seats have gone to just 25% of all sub-castes classified. And around 25% of these jobs and seats went to just 10 OBC communities.983 OBC communities, 1/3rd of the total, had almost had zero representation in jobs and admissions in educational institutions. Proposed to divide 27% reservation for the castes on the Cent
