NGOs – Millennial Matriarchs

Care-giving for children with Intellectual and Developmental Disabilities involves a lot of time and a lot of effort, as the children may need assistance for even basic everyday tasks, like personal hygiene and eating. If they are attending an institution, they may need to be dropped and picked up. Someone has to be there with them at all times of the day.

This also reduces the earning ability of parents, as at least one of them will have to be at home all day.

Parents of such children live under constant worry about the future: Who will look after the child after they are gone? How to financially provide for them? Will their child be cared for, safe and loved after them? They often face stigma and rejection from family, friends and society. They are in constant emotional stress.

These day-to-day challenges and long-term worries put an enormous pressure on the parents. Worldwide studies have shown that such care-givers suffer more from chronic diseases as well as stress, anxiety and depression. They also neglect their own care.

This is not a well-recognized problem and there are few initiatives to support such families.

That is why the project described below is special.

AMC, a 62 year-old NGO, with the guidance and support of Dr. Srinivasa Murthy retired Professor of Psychiatry at the world renowned Nationa Institute of Mental Health and Neuro-Sciences (NIMHANS), conceived Project ENRICH, to understand challenges of care-givers and develop a programme of support.

Process of Project ENRICH

The project team had deep conversations and interactions with care-givers of children with special needs to understand aspects of caring for such children. The team found that parents face several challenges in their everyday life, from understanding what the special child means to them, to how to care for the child, to financial issues, family un-involvement, lack of knowledge on the availability of government support, associated health conditions of the child at a very young age, and relationship issues due to less understanding between the parents.

Key components of ENRICH

Based on the extensive research with parents and care-givers the set out the following programme:

1. Training for the parents. The training involves helping them understand and practice 10 self-care activities, namely:

Finding purpose in life
Enhancing supports and connectedness
Sharing of feelings
Journaling- Learning to use journaling as a tool at a time of distress
Relaxation and leisure-breathing, yoga, meditation
Music- To help understand the importance of relaxation and pleasure activity when faced by any difficulty or thoughts in stressful situations.
Exercise- Understand the importance of practicing exercises every day for 15-20 minutes
Understanding the importance of sleep
Importance of proper nutrition.

These sessions are held in small batches of 10 parents per batch, giving the time and safe-space to the parents to express their journeys.

2. Publications: Based on the interactions with parents and with expert inputs, two books have been published under the ENRICH project which will enable the learnings to be disseminated, and provide guidelines for other groups to take up such initiatives. Initially published in English and Kannada, these have recently been brought out in Gujarati with in partnership with National Institute of Mental Health and Neuro-Sciences (NIMHANS). The publications are:

Loss Love & Growth- Stories of Families Caring for a Person with Special Needs: The book is a compilation of 25 stories of unique lived experiences of the caregivers of persons with Intellectual and Developmental Disabilities (IDD). The stories are based on the interviews held with these caregivers and families.
Self-Empowerment Activities for Emotional Health-Guide for caregivers of persons with Special Needs: The book includes caregiver guidance and health practices recommended by international bodies such as UNICEF and WHO. The content of this book is for informational purposes only and is not intended to diagnose, treat, cure, or prevent any conditions or disease. This publication is meant as a source of valuable information for the reader, however, it is not meant as a substitute for direct expert assistance.Caring for Care-givers

3. Skill-training for care-givers: One of the key findings of ENRICH was that a major anxiety among parents of special children is how to enhance their earnings to take better care of their children and save for their future.

A skill center, which would help train family members has been set up at AMC, which is open for parents and family members of any child with any type of disability.

Mothers trained at the center have started earning incomes. It is not just the money. They look forward to the future with more confidence and positivity.

AMC looks to collaborate with like-minded individuals, organizations and corporates to share the processes, knowhow and products of Project ENRICH across the country (or the world, for that matter!)

Proud to be associated with AMC.

–Meena

For more information on AMC and to connect: https://amcin.org/

Ponder this…

Helpage India runs 152 Mobile Health Units which travel to 1920 community locations spread over 22 states, and has provided 3 million treatments to vulnerable seniors at their doorsteps.

The Association for the Mentally Challenged, Bangalore was founded in 1960, and since then has been supporting children, adolescents and adults with intellectual disabilities, with the aim to educate, train and rehabilitate them.

Association for Democratic Reform works to improve voter knowledge by disseminating information on candidates contesting local and national elections through all media across the country.

Akshaya Patra Foundation strives to eliminate classroom hunger by implementing the Mid-Day Meal Scheme in the government schools and government-aided schools. Today it is serving meals to 1.8 million children across India.

Pratham focuses on high-quality, low-cost and replicable interventions to address gaps in the education system. Working directly with children and youth as well as through large-scale collaborations with government systems, Pratham programs touch millions of lives every year.

Give India, itself an NGO, is the largest and the most trusted giving platform in India. It enables individuals and organizations to raise and donate funds conveniently to any cause they care about.

Goonj aims to build an equitable relationship of strength, sustenance and dignity between the cities and villages using the under-utilized urban material as a tool to trigger development with dignity, across the country.

Centre for Environment Education has been working across the country for the last 40 years, to increase awareness about the environment and sustainable development, working with schools, higher educational institutions, policy makers and reaching out to youth and the general community.

The Bombay Natural History Society (BNHS), a pan-India wildlife research organization, has been promoting the cause of nature conservation since 1883. Its mission is Conservation of nature, primarily biological diversity through action based on research, education and public awareness.

Sulabh International Social Service Organisation developed a two-pit pour-flush using ecological compost toilet technology. Sulabh flush is based on a simple design that is eco-friendly and uses just around 1.5 litres of water to flush. Over 1.5 million such toilets have been constructed across 492 districts of India.

All the organizations mentioned above belong to what is called the ‘third sector’. It is common to refer to three sectors of society, viz Government, Business, and the Non-Profit sectors. The academic Maciariello. J (2005) explains it thus: ‘First, there are public sector organizations through which the work of government is carried out. Then there are private organizations, organizations established to meet the economic needs and wants of society. And finally there are social sector organizations to care for those welfare needs of citizens that are not met fully either by public or private sector organizations.’

The relationships among these three are complex and dynamic. They may be complementary, supplementary or antagonistic. For instance, government looks to business to produce goods and services that people want, provide jobs and underpin the economic growth of the country. At the same time, it regulates how business functions. Similarly, governments and businesses look to NGOs to provide last-mile services to communities. At the same time, governments regulate NGOs; both the others sectors fund them; and both government and business are sometimes sceptical about them. There are also NGOs and activist organizations which bring to light the misdoings or shortcomings of governments and businesses, and speak up for the interests of society, especially those who do not have a voice—the under privileged, the environment, etc., and hence are on the opposite side to the other two. But what we need to understand and accept is that each of these has its own responsibilities and tasks in a well-functioning society.

As per the definition in India, NGOs are Non-Governmental Organizations working towards various causes or charitable purposes, i.e., activities which are carried out for ‘relief of the poor, education, yoga, medical relief, preservation of environment (including watersheds, forests and wildlife) and preservation of monuments or places or objects of artistic or historic interest, and the advancement of any other object of general public utility’. (Section 2(15) of the Income Tax Act, 1961). These organizations aim to do good for society, and not generate profits. Hence, NGOs are legally not allowed to distribute the income from their working to their members. According to some reports, there are over 30 lakh NGOs in India. However, it is difficult to be quite sure of the number of working, functional NGOs.

In terms of legal structure, NGOs can be registered as Societies under Societies Registration Act (1860); Trusts under Indian Trusts Act (1882); or Non-profit company (Section 8 Company) under Companies Act (2013). There is no difference in status among these forms (though there is a lot of difference in terms of disclosure, transparency and governance requirements, with Section 25 companies required the most stringent compliances), and it depends on the context of the organization as to how it chooses to constitute itself.

NGOs differ greatly in the scope of their work, the nature of their work, size, objectives, mission, thrust areas etc. Some may have only a few staff members, while others may have employees running into hundreds. Some may work in a single village, town or community, while others may work across geographies, even internationally. Some may work on a single theme like girl child education, while others may work on holistic rural development or variety of issues from health to environment to sanitation. Some may be involved in grassroots work and delivery of services, while others may be involved in capacity building, or advocacy, innovating and creating new models of delivery of public goods and services, or policy work or funding.

Often, NGOs are accused of financial mis-governance, programme mismanagement, or not making an impact. But there are as many bad apples in every basket! Who has not encountered a bribe-seeking babu or a governmental system which needs to be oiled? How many times a month do we wake up to headlines about the shenanigans of bad corporates which cost the nation in the hundreds of crores? There is no particular reason to point fingers at the Third Sector, who for the most part work with a great deal of commitment and passion, in difficult circumstances and with less rewards.

The need is for society to understand the important role that NGOs play, the value they add, the key role they play in social development and building a just and more equitable world, and not stereotype them—either as impractical do-gooders or a self-serving bunch.

That’s a resolve for World NGO Day, marked on the 27^th of February every year!

–Meena