Anil is lifting the veil on a whole problem of human experience in developing countries and that no one else has- that of being a carer . By drawing attention to the emotional, social and economic challenges carers face, he is placing them on the mainstream development agenda and bringing a transformational shift in the way organizations globally work and engage with carers.
The New Idea
The role of a carer can be defining, especially for poor women and children in developing countries. Caring for their sick and differently abled family members most of their life, they experience a deep sense of isolation and loss of education and livelihood opportunities. Unfortunately, they are only treated as a means to an end of caring better. Anil is reversing this reality in developing countries, by bringing their role to the forefront and catalyzing solutions that address their emotional, social and economic needs along with that of their loved ones.
Anil is creating the research, support structures and policies to create a global field that supports carers. By highlighting research on problems faced by carers and showing them how supporting carers will have a multiplier effect on their impact in communities, he is getting strategic local organizations to prioritize the needs of carers. Through a collaborative and lean approach, he is not only able to co-create localized solutions that support the health and livelihood of carers, but also embed the agenda of carers into their vision in the long term. Parallel to efforts on the ground, Anil is also strengthening the collective voice of carers to advocate for their needs at the community, regional and national level. He is organizing carers into carer associations that can advocate for their rights and also building critical data need to show the economic contribution of carers in the society. Through these efforts, he aims to eventually advocate for state supported, carer allowance and mandatory health check ups among other things.
At the global level, Anil is also playing a strategic role in placing the agenda of carers with large investors and philanthropists. With chronic illnesses and disabilities on the rise, Anil’s role in placing the needs of carers as a mainstream developmental agenda globally is significant.
Long-term care for people with chronic illnesses and disabilities presents an urgent challenge around the world. The World Health Organization estimates that in many developing countries the need will increase by as much as 400% in the coming decades. (WHO 2002, Current and Future Long Term Care Needs, World Health Organisation, WHO/NMH/CCL/02.2)
Over the last 15 years, public, private and citizen sector efforts have made progress in designing solutions that address needs of people with mental/ physical disability or chronic illness. However, the challenges and needs of a huge population that is indirectly affected by such chronic illness or disability- namely the carersgivers, remains unaddressed.
The pressure on carers is significant, especially in developing countries, where there is little or no state support or provision for families affected by disability, mental illness, HIV/AIDS, chronic illness or old age. A lack of support services impacts directly on carers’ health and wellbeing and prevents carers having a life outside of their role of caring. Individual carers, many of who are children and women, are unable to go to school, take jobs or lead an independent life. A World Bank report, People with Disabilities in India, 2009 found that 45% of adults caring for a disabled family member were unable to work fulltime. As tThe wider economic needs of the carer and family are not addressed and many of these families live in extreme poverty.
Gender issues increase the problems of women carers. In India, an estimated 73% of the carers are women and 9% are children. In Nepal, 15% are estimated to be children carers, most of who are girls and have to drop out of school to care for their parents or siblings. There is little or no opportunity for respite and the role of a carer defines their existence. These factors diminish their mental and emotional wellbeing. Data collected by Anil shows that 61% of carers themselves suffer from depression and anxiety. This not only affects them but also adversely affects their ability to fulfill their caring role effectively.
Consideration of the needs of carers – physical, emotional, economic or social – is therefore missing. Further, although unpaid family carers carry outperson 85-90% of the care work (10% is done by professionals), their contribution of carers to society remains uncredited and is also unrecognized. and undervalued.
It is estimated that in the UK, one in eight adults (around six million people) are carers. With this number as a reference, it is estimated that India alone could havehas 150 million carers (this figure also includes child carers). The number of people involved in caring is on the increase and there is an urgent need to address the issues facing them if they are to continue making the enormous contribution to society that they currently do. If carers are to have the same opportunities as everyone else in society and to be able to have a life outside caring, there is a need to provide structured support to improve the health and well-being of carers. There is also a need to increase both the understanding and recognition of the role they play. The needs of all carers should be both understood and met to enable each carer to develop and thrive as individuals, thereby improving their lives and the lives of those they care for.
Anil is strategically approaching the issue to create a global movement that recognizes and supports carers. Rather than starting parallel efforts on the ground, he is acting as a catalyst to the field by placing in the agenda in the hands of multiple stakeholders, gathering critical data and empowering carers to advocate for larger policy shifts.
He is first targeting developing countries, like India and Nepal that lack the underlying infrastructure to make caregiving a viable role. Seeing CSOs that work with persons with disability or the elderly as strategic allies, he leverages critical data he has collected on issues facing the carer to bring the lens of carers to their work. Over the last three years, he has taken four local CSOs based in rural areas, through a reflective and transformative process of recognizing a problem they have long overseen. Conversations with carers with this new lens, helped them prioritize the carers and adapt their strategies, for greater impact on both carers and the differently abled. This collaborative approach not only helps Anil accelerate impact on the ground, but also helps create a highly replicable and flexible model that can meet local needs.
A key component of such local strategies includes building support structures for differing needs for of carers. In partnership with local CSO’s he has co-created ‘carer support groups’ that bring carers together at regular intervals. This acts as the first safe space for many carers (especially isolated rural women) and creates social networks for their emotional wellbeing. For most, this is the first time any one has enquired about them or they have articulated their emotional or economical state. Regular health check ups and counseling are also provided to ensure the physical and mental well-being. They have also co-created creative programs to offer a break from caring responsibilities. For example, in one region, the local CSO saw that families have never traveled and took the opportunity to takeof taking the carer and their family on a retreat. In other places, they offer day care services to provide respite and short breaks.
Initiatives are also launched to help carers augment income or pursue education while caring. To better equip local CSO’s Anil has developed a tool to assess skills and opportunities for carers. Using this, carers are trained to launch home based activities, like goat rearing and tailoring. Anil has also encouraged the local CSOs is also the first to leverage the Indian National Rural Employment Guarantee Act , that assures 100 days of work a year to target carers. Today, over 50 carers have been able to benefit from the scheme, for example by providing day care services to the children of workers who are employed under the scheme. In Nepal, he is launching ‘Community Caring Centers’ with the support of the local Village Development Committees in Nepal. Led by a trained woman carer, he envisions thiese centers as a space where carers in a village /area can leave their loved ones as they puruse pursue education or employment opportunities in return for a small feelieu of a fee paid. This will not only enable the carers to earn a livelihood but also make the centers sustainable. The centers will also be equipped to empower people at the center to pursue different activities such as kitchen gardening, making handicrafts or painting.
Outside of providing critical support, Anil seeks to strengthen the collective voice of carers to advocate for their needs at the community, regional and national level. Towards this, Anil will be supporting partner CSOs to launch district level Carers Associations over the next year – three in India and two in Nepallaunched two carer’s associations with 60 carers at the District level. These associations will take forward the collective agenda of the 3,000 carers in India and Nepal with whom CarersWorldwide is currently working. The support from the Commonwealth Foundation grant is now helping him to strengthen the advocacy and mobilization of 1200 carers into district level carers associations.
In the long term, Anil is committed to build a national movement that advocates for the economic, social and mental wellbeing needs of carers. For this, Anil recognizes that data will play a critical role. So, he has begun collecting key data to show the multiplier impact of supporting the carer in helping them care more effectively. He has also begun to collect data in order to place a monetary figure on their caring activities in order to value their economic contribution and advocate for a carer allowance (social security support by the government) and mandatory health check ups.
Over the lastJust two years ago, Anil was has directly impacting the lives of ed 300 carers in partnership with three organizations across the states of Karnataka, Andhra Pradesh and Jharkhand in India. Of those initial 300, 55% of them are now engaging in economincally productive activities. Local organizations have found that by supporting carers with these needs, those carers that they are ultimately able to improve the care they offer to their relative end patient. Now, two years on, a grant The commitment from DFID, has also enabled him to recently expand his work to 1500 carers in Nepal. Grant support from the Commonwealth Foundation is now helping him to strengthen the advocacy and mobilization of 1200 carers in India. By the end of 20145, he aims to be entering Bangladesh. By then, he will be instrumental in transforming the lives of overand working with 3,000 carers and touching the lives of a further 12,000 family members (including the cared-for).
Anil is strategically drawing the attention of leaders, donors and other key organizations to the issues affecting carers. As most people from all walks of life at some point of time have had to or will have to care for someone, he is able to eaffectively connect with their personal experiences as carers to empathize with the issue. His engagement has already influenced three key donors -such as DFID, the Commonwealth Foundation and Give India to fund projects specifically focused on carers (such as providing loans to carers to start income generation activities) for the first time. Further, in partnership with World Vision India, Anil plans to hold held a national level consultation workshop in 20154 that broughtwill bring together policy makers, CSOs, academics and donors.
An unexpected combination of experiences has prepared Anil to take on this challenge.
Growing up in an agrarian family in rural Karnataka, he went to a veterinary school to be better equipped to support his communities needs. It was while acting as a veterinary doctor with SAMUHA, an NGO working in rural northern Karnatakain a local organization, supporting diary farmers in income generation programs that he first encountered a case of a woman with mental illness. She was was stark naked in the village and children were throwing stones at her. This incident left a deep impression on him and made him realize that local organizations lacked the capacity and skills to address mental health issues.
Keen to find solutions to address the needs of persons living with mental illness, he was pleased to be approached made contact with Basic Needs founded by Ashoka Fellow, Chris Underhill to become. He became a part of the founding team of BasicNeedsin India, where he and helped bring aboutamong the first community mental health and developmentrehabilitation programs for the mentally ill in India. He also led the development of Basic Need’s’ sustainable livelihood policy and also pushed for other CSOs to exappand their work to cover mental health issues.
During this period, he realized that his team often quickly labelled carers as non-cooperative and a barrier when they did not follow advice or participate fully in the process of caring for their relative. Intrigued by this, Anil began to understand carers and the issues they faced better. So instead of seeing carers as only a means to empowering persons with mental illness, he began asking them how they were doing outside their role as carers. His conversations highlighted a the deep sense of burden and isolation carers felt.
To understand this issue better, Anil pursued a Master’s program in International Disabilities Studies at University College London where he focused on studying the burden of mental illness on family members. Upon graduation, he joined the led Wellcome Trust’s where he was head of their International Public Engagement programme, working to build the links between research and the people at grass roots level in 19 developing countries efforts in 19 countries. This stint gave him the opportunity to work in a large and professional organization. He moved from there to the Tubney Charitable Trust, where he spearheaded their programme of funding farmed animal welfare research, dispersing over £22 million and achieving long term impact on the animal welfare sector.
During this period, Anil’s second daughter was born and he and his wife became carers themselves since she has Down’s syndrome. However, very soon, his daughter was diagnozed with Down’s Syndrome. This personal experience made him realize the burden on the carergiver first hand. While he and his wife benefited from a strong support system in Londonthe UK, it triggered his thinking back to the work he did in India and the burden poor families in developing countries would face. Committed to build a more supportive environment for carers, he spent time with families and other stakeholders in India and , South Africa. and Nepal.
Drawing from these learnings, he launched Carers Worldwide in 2011 to bring about an enabling support system and infrastructure for carers in developing countries.