Carers Worldwide is working in India with six partner organisations:
- Nav Bharat Jagriti Kendra (NBJK) in Jharkhand
- SACRED in Andhra Pradesh
- SAMUHA in Karnataka
- EKTA, SPREAD and WORD in Odisha
In addition, we have conducted a pilot project with the Elders for Elders Foundation in Tamil Nadu.
These programmes alone have already positively impacted the lives of over 5,500 carers and their cared-for relatives.
“A Voice for Carers: Achieving Recognition and Inclusion of Family Carers of the Disabled and Mentally Ill from Adivasi Communities of Odisha”
This three year project, funded by the Rangoonwala Foundation India Trust started in September 2017 and sees us working with 1,500 carers of people with disabilities and mental illness from marginalised tribal communities in Koraput district, one of the poorest districts in India. In partnership with three local NGOs – EKTA, SPREAD and WORD – we aim to:
- improve the physical and mental health, promote social inclusion and increase household income of 1,500 carers;
- empower groups of carers to advocate for their needs and rights;
- establish the necessary links and facilitate provisions to ensure the assessment, diagnosis, treatment and therapeutic needs of the 1,500 disabled and mentally ill individuals being cared for are met
The specific objectives of the project are to enable carers to:
- continue their caregiving responsibilities;
- address their own health and emotional needs;
- find ways to financially support their family;
- advocate as a group for their rights and needs through the establishment of local and national networks; access the necessary services to enable appropriate assessment and management of their disabled or mentally ill relative’s health and therapy needs
For more details, take a look at our baseline survey report from the area.
“Creating Sustainable Livelihoods and Relieving Household Poverty for Unpaid Family Carers of People with Disability or Mental Illness in India”
This one year project funded by the Scott Bader Company Limited and the Evan Cornish Foundation concluded in 2016. Focusing on high poverty areas of Jharkhand and Karnataka states, 154 carers received training and support to initiate new livelihoods such as tailoring, vegetable growing, small animal rearing, broom making and carpentry. In each project location, a community caring centre was also established to provide quality care for the cared-for relatives, enabling carers to pursue their chosen livelihood.
“I am a single parent and my child has learning disabilities. I can now go to work as my child is looked after and she can help around the house with new learning when she is at home. Now my neighbours and local people are better towards me and my child.”
The project has given carers who were previously unable to work, because of their caring responsibilities, the opportunity to identify a suitable income generating activity and pursue it. Already, carers’ incomes have increased significantly, with average earnings of between Rs 1,200 and 3,000 (£15 – £37.50) per month. This represents a significant contribution to household income and is bringing many families above the poverty line for the first time. In addition, carers’ self esteem has increased as a result of engaging regularly in a livelihood and they are receiving greater recognition from their community. The lives of the cared-for individuals have also been enhanced, through increasing opportunity to interact outside of the home, socialise, and in many cases learn new skills or attend a setting where they receive regular educational and therapeutic input.
“Invisible to Visible: Documenting the Lives of Carers in India”
This two year project, conducted in partnership with carers and staff of SACRED in Andhra Pradesh and supported by the Wellcome Trust, documented the day to day lives of carers in the form of a short film, which was then used to promote awareness of the realities, challenges and impacts of caring for a family member. Community leaders, health professionals and government officials engaged in a series of events where they viewed and discussed the film and were then invited to take action for the carers in their local area and pledge to support and promote their cause. Watch the film
Carers Worldwide works in partnership with two organisations in Nepal – LEADS Nepal and Cerebral Palsy Nepal (SGCP). Our programmes are transforming the lives of 2,200 family carers of children and adults with disabilities or mental health needs, as well as those for whom they care.
“Care for Carers: Empowering Parents of Disabled Children in Nepal”
This three-year project, started in 2016 and funded by the National Lottery Community Fund’s Rebuilding Communities programme is based in the Kathmandu Valley. Working in partnership with Cerebral Palsy Nepal (SGCP) we are promoting the social, emotional, medical and economic wellbeing of carers, mostly mothers, of children with cerebral palsy and other neurological disorders.
Restricted for much of the time to the house, unable to go to work or socialise, many of these carers have been isolated and unaware of their rights. For many, their properties and livelihoods were destroyed in the 2015 earthquakes. Excluded from society, they didn’t realise they could access government and NGO support in the weeks and months that followed. The project is raising awareness and establishing carer-friendly services to empower this vulnerable community of carers.
Highlights of the project to date include:
- 391 carers reached
- 97% of the carers are women (mostly mothers)
- Baseline survey completed and published (See Below)
- 23 local carers groups and 5 cluster level committees set up
- Carers Day celebrated for the first time in Kathmandu
- 11 local doctors trained on carers’ needs
- 3 health camps held and 78 carers assessed and started necessary treatment
- Counsellor visiting all the carers groups
- SGCP staff being trained in barefoot counselling
Plans for Year 3 include strengthening the carers groups; forming a Carers Association, continuing physical health and counselling support; getting carers set up in sustainable livelihoods and promoting alternative care arrangements.
Read our Baseline Study Report ‘Caring for Carers of Children with Cerebral Palsy in Nepal’
- 97% of carers are women and 94% are mothers
- 63% of carers are not earning (although 97% are of working age)
- 16% of the households have nobody earning
- 41% were unable to take a break from caring
- 68% reported feeling isolated or lonely
- 75% had significant concerns about their financial situation
- 72% had physical health concerns
- 76% reported significant anxiety
- 55% experienced chronic lack of sleep (a significant factor affecting carer wellbeing)
“This will show us the way to having our voices heard and recognised. We will work hard to make it sustainable” – Carer Representative.
“Improving the Physical and Mental Health, Promoting Social Inclusion and Increasing the Household Income of 1,500 Carers of Mentally Ill Individuals in Nepal”
This three year project, funded by UK Aid Direct and conducted in partnership with LEADS Nepal was based in the remote districts of Baglung and Myagdi in the Western Region of Nepal.
The project concluded in 2017 but the benefits experienced by the carers are still sustaining. There was also a significant impact on the relatives for whom they care and the other members of their households as a result of sustainable increases in household income, improved wellbeing of the carer and greater awareness amongst community members and local professionals of these vulnerable individuals.
Prior to this project, there had been no support of any kind targeting carers of people with mental illness and epilepsy in the region. The results of our baseline survey conducted at the start of the project showed that 25% of carers were isolated, 69% experienced physical health problems, 77% were depressed or anxious and 97% of carers and their households lived below the poverty line.
After three years, the project achieved the following:
- 57 support groups, bringing together 870 carers for emotional support and local advocacy activities
- 473 local professionals and volunteers trained and now assisting carers to access counselling and medical support
- 994 carers trained in livelihoods that can co-exist with their caring responsibilities
- 10 community centres established to provide respite care
- 285 child carers reintegrated into school
- 2 district level Carers Associations and 2 Carers Co-operatives formed to raise the voice of carers to local government and stakeholders
Significantly, 88% of the families involved in the project now have regular incomes that bring them above the poverty line (compared to 3% at the start of the project). 67% of carers report that their health needs are reducing and 55% now have alternative care options available to them.
Our work with LEADS Nepal continues in the project districts, and the carer-led Carers Associations and Carers Co-operatives continue to go from strength to strength.
“Action for Carers: transforming lives, policies and practice for unpaid family carers in Nepal”
In partnership with LEADS, this year long project funded by the James Tudor Foundation and the Scott Bader Company Ltd worked with 200 family carers in the Kaski and Syangja districts of the Western region.
17 carers groups were formed, bringing together 162 carers to discuss their needs, develop alternative care options for each other and make representation to local government officials. To ensure sustainability, 18 local health volunteers were trained to enable these groups and activities to continue after the project had ended. 122 carers took up a range of new livelihoods activities such as goat and chicken rearing, increasing household income and enabling them to meet the financial needs of their loved ones such as purchasing vital medicines. Engagement in income generating activities has also resulted in promoting the carers’ sense of self-esteem. 50 child carers have gone back to school, helped by teachers specially trained by the project to understand and support them.
“A year ago we were alone. Now we are supported and included. I can have a vision for my daughter’s future now” – Hum Kumar Khatri, mother of 11 year old Sabina who has cerebral palsy
Earthquake relief and rehabilitation
Following the devastating earthquake on 25th April 2015, which was followed by further quakes, aftershocks and landslides, Carers Worldwide launched an appeal with our strategic partner BasicNeeds to bring immediate relief and longer term rehabilitation to the residents of Baglung and Myagdi districts. Working with our partner LEADS, our specific focus was individuals living with mental illness or epilepsy, their carers and families. In disaster relief situations, these especially vulnerable individuals often face significant challenges in accessing relief. Our joint appeal raised over £28,000 which has enabled:
- Relief supplies (food, water, tents, blankets and emergency medicines) to residents in our project villages
- House rebuilding/repair for 20 families
- Psychosocial support (medicines and counselling) to over 700 individuals with existing or newly emerging mental ill-health and their carers
- Disaster-preparedness training to residents in 20 project villages
In addition, the Scott Bader Company Limited has provided generous support to enable us to support local carers of people with mental illness or epilepsy like Phulu Kharga to rebuild livelihoods which have been damaged or completely destroyed by the effects of the earthquake.
In 2018 we commenced our first project in Bangladesh.
“Testing an approach to social and economic inclusion of impoverished family carers in Bangladesh”
In 2018 we launched our first project in Bangladesh. The Department for International Development’s fund supporting civil society organisations to achieve sustained poverty reduction, awarded us a grant to conduct an 18-month pilot project in Savar sub-district on the outskirts of Dhaka, the capital of Bangladesh. For this project we have partnered with local NGO Centre for Disability in Development (CDD). Research by CDD has estimated that 67% of households in Bangladesh containing a carer and person with disability are living in extreme poverty on less than $1 per day. These carers are currently excluded from mainstream poverty alleviation programmes due to caring responsibilities and stigma.
Using a community empowerment approach, this new project will address the social and economic challenges being faced by carers, the majority of whom are women. Proposed outcomes we have for this UK Aid Direct-backed project include:
- Carers participating in local support groups
- Carers having access to improved medical services and counselling
- Carers reporting an improvement in their wellbeing
- Carers engaging in new livelihoods
- Carers having the information and support that they need to access government and private livelihood opportunities