Prachi Deo

Prachi founded Nayi Disha with the vision of transforming the ecosystem of care for children and young adults with intellectual developmental disabilities by positioning families as the primary drivers of change. She is shifting societal mindsets to recognize parents and caregivers not just as supporters but as key change agents in their children’s lives. Through a combination of empathetic technology solutions and community-driven initiatives, Prachi is building an inclusive, systemic framework that empowers families, strengthens support networks, and redefines how care and advocacy for intellectual disabilities are approached at scale.

Prachi created a movement that shifts the focus to families of children with intellectual and developmental disabilities as primary caregivers, recognizing their role as change agents in the children’s lives.

Prachi created a new ecosystem focused on empowering family caregivers through a three-pronged approach: Inform, Connect, and Empower. First, through an open digital resource center she provides families with access to critical information through their lifecycle - from diagnosis to schooling, puberty, health challenges, adulthood, and beyond. Second, she connects families with each other, building a strong support system where they learn from each other, advocate, and grow together. This network of empowered parents, including parent champions, ensures sustainability by guiding others through the journey and self-organizing when required. Third, she empowers family caregivers through structured training programs, equipping them with different levels of knowledge and tools to support their children at home effectively.

By empowering and recognizing family caregivers, Prachi not only improves their quality of life but also equips them with the knowledge and confidence to support their children more effectively. Prachi has successfully moved government agencies to address the challenges families face at every stage of the caregiving journey. Thanks to Nayi Disha, the government system in the five states- Telangana, Maharashtra, Madhya Pradesh, Uttar Pradesh, and Jharkhand is now adopting the caregiving model Prachi has created.

Prachi grew up with an elder brother diagnosed with Down syndrome and later grew into the role of his caregiver. For Prachi, growing up, learning the needs of her brother helped her develop strong empathy toward people with different intellectual abilities. Over time, Prachi realized how the families of children and young adults with intellectual and developmental disabilities lack the resources, how-to's, and professional support they need to provide the right care. Prachi realized that oftentimes people depend on external support systems for people with intellectual needs.

An estimated 7% of the Indian population is affected by intellectual and developmental disabilities (IDDs), impacting 31 million families who often remain unsupported and isolated. While interventions primarily focus on the individual’s journey, parents and families are largely unrecognized, leaving them without the necessary caregiving ecosystem. Prachi saw that families, especially mothers who provide primary care, lacked access to critical information and were unaware of available services in their own cities. Many ended up traveling long distances, waiting outside doctors' rooms for hours with little understanding of the services or interventions their child was receiving. The challenges exist at multiple levels—access to information, ecosystem support, knowledge of practical parenting skills, and social acceptance of the child’s condition.

According to a study in the Asian Journal of Psychiatry, 66% of caregivers in India report a high need for support, yet their journey remains overwhelmingly lonely. The caregiving burden disproportionately falls on mothers, with 43% reporting a loss of spousal support, and up to 54% experiencing social isolation and stigma. A 2020 study in the Industrial Psychiatry Journal further highlights that mothers of children with intellectual disabilities face significantly higher levels of depression compared to fathers, with fathers showing only 1 in 1000 chances of suffering from depression. Parents whose children lack access to special schools experience even greater mental health challenges. Additionally, 36% of families report forced isolation within their communities due to social restrictions, deepening their sense of exclusion and disconnecting them from potential support networks.

Despite the presence of key stakeholders—government agencies, healthcare infrastructure, private service providers, non-profits, and families—these components have been operating in silos, limiting their collective impact. Prachi recognized that true transformation lies in integrating these fragmented systems, ensuring that families are not passive recipients but central players in a well-connected, holistic ecosystem.

Prachi’s vision is to enable and equip families (closest and most invested) affected by intellectual disabilities to be the changemakers and key contributors in the development and growth of their loved ones, empowering the families with useful information, agency, and the resources to make timely and right decisions for them. Prachi's big goal is to leave no family behind in this mission and to create an irreversible cultural shift in Indian society.

Through her three-pronged approach to inform, connect, and empower, Prachi provides families and caregivers with credible and up-to-date educational articles, videos, and tools on developmental disabilities, therapeutic interventions, and educational strategies through the digital resource center. To ensure equitable access to essential services, Nayi Disha connects families with a curated network of service providers across India, therapists, special educators, medical professionals, and support organizations, including those who speak their vernacular languages. Recognizing the importance of community, Nayi Disha also facilitates support groups, workshops, and engagement initiatives—both online and offline—allowing caregivers to share experiences, gain emotional support, and learn from experts. The programs are coordinated through Field Officers and are accessible in five regional languages (English, Hindi, Telugu, Bengali, Marathi). Additionally, caregivers can seek guidance and assistance through helpline numbers via call or WhatsApp, ensuring continuous support tailored to their needs. Nayi Disha has become the one place where parents can find all solutions, reaching 7.5 lakh families and seeing a 40% increase in reach every year. The focused interventions are aimed at empowering the families to make informed decisions regarding their children and equipping them to take care of the children at home as well.

Nayi Disha created a diagnosis fact sheet on symptoms, early detection, and interventions, which is now adopted by the government and distributed through district Composite Regional Centers (CRCs) to reach rural areas. Addressing stigma and isolation, Nayi Disha’s peer support groups provide a safe space for families to share experiences and support each other. What began as one group has grown into 38 groups across India, reaching 54,000 families.

To reach offline families, Nayi Disha launched physical help desks and digital kiosks in partnership with the government, providing vital information and support while parents wait for service appointments.

Nayi Disha has reached over 700,000 individuals, with a growing community of 55,000+ families and an annual expansion rate of 40%. It supports 38 active groups, each with at least 500 members, and provides services across all states, with a physical presence in Telangana, Maharashtra, Madhya Pradesh, Uttar Pradesh, and Jharkhand. Since 2020, its helpline has resolved 23,000+ queries, while 4,000+ families engage annually through physical events. Its digital platform offers 750+ educational resources in five languages and a network of 6,400+ verified service providers, including therapists, educators, and medical experts. Nayi Disha collaborates with government bodies such as District Early Intervention Centers and Composite Regional Centers in Madhya Pradesh, Telangana, and Delhi, piloting rural family support initiatives and advocating for policy changes like full pension disbursement to eligible families. Recognized by the Delhi government for caregiver assistance programs, it has also installed physical kiosks in district hospitals and rehabilitation centers to enhance rural outreach.

Nayi Disha has secured $1.3 million in funding with support from 10 partners, including the government as its largest strategic ally. Its team of 40 members, many with lived caregiving experience, drives its mission. Partnering with private hospitals like SRCC Mumbai and Rainbow Hospital Hyderabad, Nayi Disha is integrated into medical prescriptions and helps families access essential healthcare and therapeutic services.

Prachi is driving a mindset shift by fostering parental acceptance, decision-making empowerment, and a strong support system. This framework forms the core of Nayi Disha’s monitoring and evaluation, assessed through biannual surveys covering 5% of the served population. Impact measurement operates at three levels: geographical reach, parental empowerment and acceptance, and overall support felt by families. Every service provided is evaluated to ensure meaningful and sustained change.

Nayi Disha plans to expand its reach by partnering with digital organizations and advocating with the government to increase digital access for literate families. For disadvantaged communities, the focus is on identifying key towns, mobilizing parents, creating parent champions, and building strong support networks through government collaborations. Efforts will ensure accessibility by providing information in regional languages and transitioning engagement from in-person to digital platforms like WhatsApp for long-term sustainability. In rural areas, Nayi Disha is piloting a government-backed localized support system, aiming to scale it based on evidence. Looking ahead, the organization will strengthen digital services, deepen government partnerships, and expand parent-led community networks. With clear plans for growth, Nayi Disha aims to build an ecosystem of support for caregivers by securing funding, scaling initiatives, and ensuring long- term sustainability of continued support for families at every stage.

When she was in school, Prachi organized a fundraiser for an organization for the elderly. She rallied friends and supporters and collected money from the neighbors, raised awareness about the organization's mission and the challenges they faced. She went back to the elderly, providing them with support and addressing their needs. She built this fundraiser with empathy and care for others.

Prachi grew up with an older brother with Down syndrome. All through her growing up years, she has experienced firsthand and seen how families take care of children with Down syndrome and the caregiving responsibilities they must handle. During her childhood she used to regularly visit her brother’s special school. Prachi also had a successful career at large multinational corporates such as - Tata Consultancy Services and Microsoft, where Prachi learnt how to develop robust systems for developing a network with strong value system. Similarly, her experience working with Microsoft helped her learn about developing an innovation at scale with multiple partners. During her multinational corporate work experience, she frequently volunteered at organizations for people with special needs. Prachi recognized the opportunity to build agency and re-position the families as primary caregivers as the key change-makers in the lives of individuals with intellectual disabilities.

In almost all the cases that Prachi has seen, families – especially the mothers are the underrecognized, uncelebrated heroes holding up the lives of people with intellectual developmental issues. Yet, there is so much less infrastructure to make their lives easier. This is when Prachi merged her lived experience as caregiver to a family member with intellectual developmental challenges with her experience of building networks and technology solutions, and Nayi Disha was born.

Prachi started Nayi Disha out of the city of Hyderabad (the second most innovative and entrepreneurial city with high changemaker density). Prachi has a team of 40 full-time employees running Nayi Disha with her, and a large number of her employees are mothers or caregivers like herself to people with intellectual disabilities, while a few employees have disabilities themselves. This way Prachi weaves in her and her team’s lived experience into the structure of Nayi Disha.
Notably Nayi Disha is the Scaling Fellow from India in the 2025 Zero Project, Vienna conference. Prachi has been the Women Lift Health Fellow in 2024 and Salzburg Vienna and India Inclusion Fellow in 2020 and 2018, respectively. In 2018, she was awarded the Down Syndrome Award for her exemplary work.