Keywords: India, intellectual disabilities, family support, online platform 

 

Nayi Disha Resource Centre 

Nayi Disha is an Indian NGO that supports families of children with intellectual disabilities. They have developed an online platform offering evidence-based information on topics such as education and future planning, alongside an online peer support community and a directory of verified services. Offline support is also available for families through workshops and support groups. The platform receives between 500-700 visits a day and Nayi Disha is in discussions to translate their content to support expansion to other South Asian countries.

About the practice at a glance
Name of OrganisationNayi Disha Resource Centre
Type of organisationNGO
Country
of Implementation
India
Year started2015
Funding modelIncome in 2018 was Rs 20,00,000 ($278,340). 48% from CSR, 21% from individual donations, 22% from sponsorship for annual events, 0.5% through parent contributions.

IMPACT

Niya Disha educates families on their childs condition and evidence-based practices to provide appropriate care and better advocate for their child. Well-informed families are able to find appropriate services for their child and also access. Their online platform has received 86,000 visitors since the platform was launched, and has 500-700 daily visitors on the website. They started with a handful of families, a few information resources in English and about a directory of 10 services and have now reached 3,500 caregivers, more than 225 articles in English, Hindi and Telugu and 1,100 services across 28 cities. Families, especially mothers are closely involved in creating educational resources for the families through sharing blogs, educational videos and other information. Many parents also conduct support group meetings for other families. 

THEORY OF CHANGE

We asked projects to outline their impact model (also called Theory of Change) – their main target groups, the key activities they offer these target groups, and what impact they want to achieve:

Target GroupActivityImpact
Digitally Savvy CaregiversAccess the online information, get educated on various aspects of their child’s disability and actively participate in online groupsCaregivers are empowered to provide best possible care to their loved one which improves development outcome for the child.
Caregivers with limited digital understandingAttend workshops, support group meetings conducted by Nayi Disha on various aspects of their childs disability. Are trained on digital aspects of access information. Learn to access information relevant to their needs. Information is disseminated to these caregivers through popular digital mean such as WhatsApp and trained to ask information on such forums.The capacity of giving the opportunity of being more independent
Caregivers with no digital understanding in rural set-upsConduct workshops, awareness sessions and train these parents on basic aspects of their child’s disability and help them understand the disability. Partner with local public health units, schools and other digital empowerment organisations to share the content with these parents on continued basis. Create framework for regular meet-ups coordinated by these PHCs.Caregivers understand the child’s condition and have a pathway on whom to approach for their queries. They have a supportive community and learn from each other.

REPLICATION EXPERIENCE

We have already replicated our innovation. Nayi Disha launched the pilot in Hyderabad, the capital city for the state of Telangana and has replicated the model to other cities of India such as Pune, Mumbai, Bangalore, Indore, Dehradun and now in Chennai. While the online model has been implemented, they are working with the parent support groups to replicate the offline services for Pune, Mumbai, Bangalore. Their approach is: 1) identify early adaptors, 2) train them to be parent champions 3) network with the healthcare systems within the city 4) partner with credible local organizations and 5) provide them with resources (including the Nayi Disha platform) and process to adapt Nayi Disha model. The cultural/language diversity of India is a key factor for replication and they are creating multi-lingual information resources and also upgrading the technology platform (in progress).  

ORGANISATIONAL CAPACITY AND STRATEGY

Nayi Disha’s solution leverages technology to scale and they are aware of the importance of local community and offline events such as training workshops, support group meetings, and family events. Hence, replication has been an intrinsic part of their strategy and there are factors such as language translation/ creating a city-wide directory which requires replication. With this replication in mind, they have created a process and templates framework. They are looking to understand the nuances of international replication. The most natural and easiest way for replication seems to be in the neighboring south Asian countries. They are in partnership discussion with a large organization in the state of West Bengal. Each of their board member and some staff have international experience – either has lived abroad, or studied or have had work exposure. They understand the benefits of working with international teams and mutually harnessing each other’s expertise. As of now, they do not have funds to support the replication and hence are focusing only on a few cities in the country. 

MOTIVATION

Many of the concerns and challenges that a caregiver of a child/adult with cognitive disability faces are similar irrespective of cultural, race or geographical location. Nayi Disha believes their model can be replicated in developing countries that are positioned similarly to India, such as Latin America, countries in Africa and South Asian countries such as Bangladesh and Nepal. Sharing their model with other organizations will provide opportunities to improve their services and provide better support to their community of caregivers. They also believe that this model can be replicated beyond intellectual disability, for example, the caregivers of chronically ill-patients, geriatric population and people with mental health conditions. The primary question they wish to answer is how to create a scalable and replicable supportive ecosystem to impart knowledge and support caregivers in an ongoing and sustainable manner. They also want to understand how organisations influence public policies to better support people with disabilities and their families. Nayi Disha is experimenting with the financial sustainability of their model and hopes that they can find a suitable solution by participating in this program. They want to better understand replicating the model internationally, where cultural contexts can be very different and certain new challenges could come up which we did not think about while replicating in India. They are still working on possible ways to help families in rural set-ups with limits/no digital connectivity, i.e. working with local public health communities. They are looking forward to the match making within the programme and finding potential authorities who can partner with them to implement the solution in rural parts of India as well.