Since 2014, 245 carer support groups have been formed in India and Nepal. For the first time, carers are able to meet together to discuss common difficulties and concerns, providing each other with mutual support and building their emotional resilience.
“The carers group is a lifeline for me. Life is hard, my problems are still there but now I have a group of friends who I know will listen and support me.” Rashida Begum, who cares for her three children with muscular dystrophy.
We facilitate the training of local doctors and health staff to ensure they consider the physical and mental health needs of carers. We also develop local counselling services, which provide an accessible and confidential service to carers.
These vital health services, which did not exist before in our project areas, are now available to over 7,000 carers.
Many of the carers with whom we work have never had the chance for a break from caring. Their caring responsibilities leave them with little or no time for social activities or time on their own. Our short breaks programmes enable them to take time out from the daily routine, do something for themselves and return to caring refreshed and re-energised.
So far, 289 carers have benefited from a short break.
Due to caring responsibilities, carers are often unable to go to work and many households lose two incomes: that of the person affected and that of their carer. 93% of households with whom we work are living below the poverty line when they enter our programmes. In the case of child carers, dropping out of school is often the only option, which has a huge effect on their future life chances, educationally and socially.
We enable carers to pursue livelihoods activities that can co-exist with their caring responsibilities. We also work with local government officers to ensure reasonable adjustments, allowing carers to access available schemes and services. To date, we have directly supported 1,751 carers to take up a new livelihood, bringing their families back above the poverty line. For many, it has been the first time they have been able to earn a living since becoming a carer.
“This has given me confidence. I can earn money to support my family and buy my husband’s medicine.” Phulu Kharga who cares for her husband who has epilepsy.
We train local teachers to support school attendance amongst child carers and have helped over 300 children return to school.
The establishment of community caring centres is one way adult and child carers can re-enter the world of employment, training and education. Locally run, these centres provide a safe place for disabled and mentally ill relatives to spend their day, whilst their carer is at work or school. We have supported our partner organisations to set up 14 centres, and more are planned.
Advocacy is a key feature of our work. Our carers groups give carers the opportunity to understand their rights and advocate for the services that will improve their lives and the quality of care they are able to provide. We are harnessing their collective voice through the formation of district level Carers Associations, which bring the voice of carers to the fore, both locally and regionally.
“We are one group, on one path, moving towards our own development.” Carers from the Sirivenella Carers Group.
We have promoted five district level Carers Associations in India and Nepal, along with two Carers Co-operatives in Nepal. More Carers Associations are in the process of being formed and our future plans include the development of state and national level forums for carers to come together alongside policy makers and practitioners, to raise their voice and advocate for their needs.
- continuing to work with our six partners in India (including three new partners in Odisha, with whom we are working with tribal communities, the first programme of its kind focussing on disabled children and adults and their carers in this neglected part of the country)
- continuing to work with our two partners in Nepal with a focus on livelihoods for mothers of children with cerebral palsy and strengthening community caring structures
- initiating programmes with partners in Bangladesh in the areas of disability and palliative care
- initiating our first social enterprise, training home based carers to support families in Gujarat
- pursuing research opportunities to explore ways to best support carer wellbeing in India and Nepal
With your support, we can continue to impact the lives of carers and those for whom they care.