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How We Are Fighting For Carers’ Rights

Published: 25 November 2021
Updated: 23 November 2023

Today is Carers’ Rights Day in the UK (23rd November 2023) and we wanted to take this opportunity to share the work that we do in terms of progressing the rights of carers in the countries where we work.

Carers Day Parade in Chamarajanagar, organised by our partner Margadarshi

Advocacy as part of the Carers Worldwide Model

Advocacy is one of the five core elements of our Carers Worldwide model. The aim of our advocacy work is to strengthen the collective voice of carers to advocate for their needs and the provision they require, at community, regional and national level, leading to changes in policy and practice.

The Carers Worldwide Model - Carers' Support Groups; Health Services; Advocacy; Employment, Training and Education; Respite and Short Breaks

Our Carers Worldwide Model

What We Have Achieved

Firstly, and most importantly, we have made caring visible and have ensured that communities and local authorities are starting to recognise the critical role that carers play in society.

This is evidenced by our international celebration of Carers Day which we began in 2022 and which has been a great success, seeing thousands of unpaid carers and their supporters come together to demand recognition and support. Through persistent advocacy, we also successfully convinced the Government of Karnataka in India, to observe Carers Day statewide in 2023, a historic first.

It was further demonstrated by our success in prioritising carers for the COVID-19 vaccine. Family carers were hit hard by the pandemic, many were not able to leave the house, worrying that they would bring the virus home with them. Throughout the pandemic, we have been lobbying state authorities in Karnataka to prioritise family carers for the vaccine. We were successful and over 400,000 carers have been vaccinated, meaning they can have more confidence in going about their lives during this uncertain time.

The creation and promotion of our Carers Groups at the local village level have played a big part in making caring visible. These groups provide support to carers and a platform for them to talk about their issues, challenges and the difficulties they face. They have helped carers by reducing their loneliness and isolation and creating a support network for them. Their benefits have been recognised by the Government of Karnataka, who have also committed to setting up and running 7,000 carers’ groups with our support.

Group of women sitting outside on the floor in a circle

Carers Group meeting at Prajapathi Nagar facilitated by our partner NBJK

“The Carers Group has given me confidence. I can share my problems and get support from my friends there.” – Maheshwari, carer for her husband who sustained a spinal cord injury.

Following on from this, we have brought representatives from these Carers Groups together, forming Carers Associations at the district level and Carers Forums at the state level. These work to engage with the various governmental departments, discussing access to entitlements for carers.

At the district level, we have helped carers to access their entitlements such as free medication and access to health treatment. These Carers Associations are a platform that allows carers to advocate and lobby for their needs and make their issues heard.

In 2023, we have established national alliances for carers in each of our countries of operation, bolstering our advocacy and support networks, and enabling collaboration with diverse stakeholders, including corporates, policymakers, and academics. 

Group of people sitting around a table in a meeting

Carers Association meeting in Kathmandu, facilitated by our partner SGCP Nepal

In India we have reviewed the existing policies of the national government and identified where we can most easily achieve support for carers.

We have identified three key areas for campaigning:

  1. Carers Allowance
  2. State Fund for Disability
  3. Caring to be eligible as part of the Mahatma Gandhi National Rural Employment Guarantee Act 2005 (MGNREGA)

The Carers Allowance

In 2016 the Indian government published the ‘Rights of People with Disability Act’. In it they mentioned that there should be “support for caregivers”. We worked with the state government of Karnataka to develop their guidelines to implement this Act. We were there to advocate on behalf of carers and the adoption of a Carers Allowance was one of the recommendations we put forward. We fought for this allowance which will provide support to family members caring for a disabled relative with high support needs, compensating them for their time and recognising the critical role they play.

This financial support is so important because 92% of carers we have surveyed across India are living below the poverty line and unable to cover basic household, health and medicine costs.

We have achieved significant gains in Karnataka state, with the introduction of a carers’ allowance, a significant milestone. Although these are currently small amounts, the fact that they are being given at all is a great start, and we aim to capitalise on that by replicating it in other states as well.

We estimate there are currently 400,000 to 600,000 carers in Karnataka who may be eligible for this allowance, yet the majority are not claiming it. More awareness needs to be generated regarding the availability of an allowance to ensure that everyone who is entitled claims it.

“This kind of financial support should be extended to all carers so that we can use the money for the immediate needs of our children and family.” – Rameeza, carer for her son who has multiple disabilities

State Fund for Disability as per the Rights of Persons with Disability Act 2016

The Rights of Persons with Disability Act 2016 stipulates that each Government should have a fund within their overall budget that supports persons with disabilities. In Karnataka, this fund is currently utilised to ensure that persons with disabilities have access to aids and appliances. We propose that money from this fund could be used to operate Community Caring Centres which would provide day care to children with disabilities. This would enable children with disabilities to reach their full potential whilst also offering their carers a chance for respite, or to take part in income generation activities.

What’s Next?

Mahatma Gandhi National Rural Employment Guarantee Act 2005 (MGNREGA)

This Act entitles rural households up to 100 days unskilled, manual, paid work per financial year. We are talking to government ministers about whether high dependency care can be considered as work and therefore carers could be entitled to remuneration as part of this scheme.

Where alternative caring arrangements are possible, such as through our Community Caring Centres, carers are able to take part in livelihood activities and earn an income. But where there is no alternative caring arrangement, whether within the family or the community if people are caring for someone with severe disabilities or mental illness, this means they cannot go out to work. We are advocating for this high-dependency care to be considered as a job in itself and so be paid for as part of the scheme.

Many state level and district level authorities and officials are sympathetic to our cause, but they need official guidelines to follow, so we are working behind the scenes to try to engage with the Ministers and authorities concerned to prioritise carers within this scheme, which is an issue they have never thought about before.

There is still a long way to go to ensure that the rights of family carers are recognised. Here in the UK, we have Carers Rights Day which is a fantastic step in the right direction, but in the countries we work in, in South Asia, there is so much more work to do and stigma to overcome.

Long-term sustainable change for carers will only occur once their rights are enshrined in policy and legislation. Carers themselves should be central to any change, and they need access to government and decision-making bodies for this to happen. Carers are entitled to lead healthy and fulfilling lives and protecting their rights is key to achieving this goal.

“Society today is undergoing a series of transformations that will change the way we live. How we view care and treat carers is a core part of that.” – Anil Patil, Carers Worldwide Founder and Executive Director

If you would like to help carers in South Asia, then consider donating to help carers