Fundraiser Ended! This fundraiser ended on March 31, 2024
Ummeed is a non-profit that works for children with developmental disabilities. I'm walking to support their cause.
1 in 8 children have a developmental disability (such as autism, learning disability, Down Syndrome, others). India has the highest number of children with disabilities in the world (estimated at over 50 million). The ratio of rehabilitation professionals to children with disabilities is abysmal (~ 1:353).
Children with disabilities are significantly more likely to be out of school, have mental health challenges, be bullied, and have poorer life outcomes.
ABOUT UMMEED
One in eight children in India in the age group of 2–9 years1 has a developmental disability such as cerebral palsy, hearing impairment, speech and language disorders, autism spectrum disorders, intellectual disability, attention deficit hyperactivity disorder, learning disorders, and others. This extrapolates to over 50 million children with or at risk of disabilities in India, with over 650,000 in Mumbai alone.
In India, children with and at risk of disabilities are typically not identified early, don’t receive early and appropriate intervention, and their voices (and those of their families) are not heard. Interventions tend to focus on making the child “normal” and “fixing deficits” rather than “building on their strengths” and supporting what the child needs to “participate in life" like all children. Children with disabilities are significantly more likely to be out of school, have mental health challenges, be bullied, and have poorer life outcomes.
There is evidence that identifying children with or at-risk disability early and intervening early can make a significant positive impact on physical and mental health, academic achievement and earning potential.2 Unfortunately, in India, access to skilled professionals (who can identify early and intervene appropriately) and lack of inclusive environment (conducive to support the child’s growth and development at various stages) are major barriers.
Ummeed Child Development Center (hereinafter referred to as Ummeed; website: www.ummeed.org) was established in 2001 by Dr. Vibha Krishnamurthy, a developmental pediatrician, with the vision of helping children with and at risk of developmental disabilities reach their full potential and be included in society. Our direct and indirect activities include:
Offering direct services to children with disabilities through the clinic.
Supporting families with knowledge, skills, rights, resources, and agency through the family resource center.
Training and capacity building programs.
Shifting culture and attitudes through awareness and advocacy initiatives
1 Arora NK, Nair MKC, Gulati S, Deshmukh V, Mohapatra A, Mishra D, et al. Neurodevelopmental disorders in children aged 2-9 years: Population-based burden estimates across five regions in India. PLoS med. 2018;15:e1002615 2https://heckmanequation.org/resource/invest-in-early-childhood-development-reduce-deficits-strengthen-the- economy/
UMMEED’s Impact
At the core of Ummeed’s work are children with and at risk of developmental disabilities. Ummeed supports them directly through its clinical services as well as indirectly through its training and advocacy work.
HIGHLIGHTS OF UMMEED’S ACTIVITIES IN FY 22-23:
In FY 22-23, Ummeed offered a total of 12,400 clinical sessions (online and face-to-face) to around 1474 children and families with and at-risk of developmental disabilities. 90% of these sessions were concessional and were received by about 78% of families belonging to lower socioeconomic strata. Our clinic continues to be a center of excellence for delivery of family- centered care for children with disabilities and their caregivers.
In FY 22-23, our short-term training programs trained over 2270+ participants through sensitization and skill-building programs, and around 424 participants through long-term training programs. Ummeed also trained 790 caregivers in the year.
In FY 22-23, Ummeed continued to nurture and deepen partnerships with specific local champions and organizations in the three identified nodes – Guwahati, Hyderabad, and Jalgaon and expanded this initiative to Pune and Kashmir. The work in these geographies entails strategic planning, risk-management, and operational support.
In October 2022, Ummeed launched the Developmental Disabilities India YouTube channel to meet a glaring gap in access to reliable information for families across the country. Within a few months, the channel already has 800+ subscribers with over 500,000 views.
During this period, Ummeed published its work on Last-mile Delivery of Early Childhood Development Services: The Role of Community Health Workers in Dadra Nagar-Haveli District in the Indian Paediatrics Case Reports.
Ummeed continued its awareness and advocacy efforts towards developmental disabilities and inclusion through campaigns on social and print media. In FY 22-23, the cumulative reach of Ummeed’s campaigns on social media and print media has been over 2,40,000. The campaigns were a combination of informative videos, videos with the voices of caregivers of children with developmental disabilities, as well as self-advocates describing their lived experiences. Ummeed also published newsletters and organized specific campaigns around ‘International Persons with Disability Day’ and ‘World Autism Awareness Day.’
Our group activities with children and their families continued through initiatives such as Fun Clubs, Apna Adda, Early Intervention Centre and Family Resource Center.
In the 2022-2023 year, Ummeed embarked on its DEI journey by conducting sensitization trainings for staff members and conducting an all-staff survey to gather important insights. Partnering with Apni Shala, an organization focused on social and emotional competencies, Ummeed conducted orientation sensitization sessions for its entire team. Additionally, a smaller cohort of 25-30 team members participated in an intensive seven-month training on deep-dive DEI topics, with workshops focusing on power dynamics, social identities, and discussions on linguistic justice and gender. This core group will play a key role in defining and implementing Ummeed's DEI priorities for the future.
Ummeed sees itself as a thought leader and ecosystem builder for child development and disabilities in India. In a region which has the highest number of children with disabilities in the world (as per a report in Lancet in 2018, 95% of children with disabilities live in low-to-middle income countries and India contributes the most to that number), Ummeed will spearhead a movement to ensure these children are identified early, they receive early and appropriate interventions, and the voices of children their families are supported and heard in intervention and policy.
PRIORITIES FOR THE FUTURE
To do this, we intend to:
- Establish a model of best practice at a center which showcases an exemplar partnership of how a team co-led by children, families and professionals can influence knowledge, attitudes, practice and policy related to childhood disability. The center will offer training and clinic services. The core of this center will be our family resource center which will make this partnership model visible.
- Build upon our expertise in training and capacity building to create future leadership in the space. We will do so by training, supervising and mentoring individuals as well as organisations in the childhood disability space through a combination of face-to-face, online, and hybrid trainings.
- Build upon our pilot to create ecosystem-level change by bringing together and supporting like-minded trainees in specific geographies towards the outcomes of early identification, early and appropriate intervention, and platforms for the voices of children and their families. We hope to explore this model in a new geography in the coming year.
- Create a network of like-minded individuals in the disability, healthcare, education, and policy arenas. Spread awareness about children with disabilities and skills to support them using widespread campaigns and learning platforms to access a wide audience of stakeholders in India and other LMICs.
- As a disability organization, Ummeed is implicitly and deeply committed to diversity, equity, and inclusion (DEI) in all spaces, including the workspace. We recognize that personal transformation within its team will lay the foundation for broader organizational and programmatic transformation.
What is 55Km Walk for UMMEED?
This is awareness about UMMEED’s work with children with developmental disabilities our flagship annual fundraising event. Walkers help us in raising funds for and creating.
Its 13th edition was held on Saturday, 21st January 2023 in South Goa. Over 75 enthusiastic participants cumulatively walked more than 2500 Kms
The 55 Km Walk for UMMEED 2024
We are pleased to inform you that the 14th edition of the 55 KM Walk for UMMEED will be held on Saturday, 13th January 2024, on the beaches of South Goa.
55 Km sounds like a lot and it is indeed a great challenge, however, over the past 13 years over 500 people – young and old – have completed the distance. At the same time, you can choose a distance you are comfortable walking, as many walkers do, and then proceed to surprise yourself by walking a lot more! The Walk is much more than just the distance you walk. Over the years, the Walk has
meant a variety of things to our walkers – great company, feeling fit, doing something for a good cause, meeting like-minded people, feeling empowered, etc.
The Walk itself is along one of the loveliest beaches in the world. It starts early in the morning and lets you experience a gorgeous sunrise along the way. Six to seven hours into the Walk there is a lunch break at the Taj Exotica. The final stretch of the Walk lets you witness an amazing sunset, has pleasant temperatures and leaves you with a huge sense of achievement.
Each walker is expected to raise at least INR 2 Lakh. The funds raised by you will be primarily used to incubate a new project / team / service or towards a project that doesn’t easily attract corporate funding.
Why does UMMEED need your support?
As a not-for-profit organization, Ummeed relies heavily on funding from individuals or organizations to carry forward its clinical, training & capacity building, research, and awareness & advocacy activities as well as fund new/ pilot initiatives and support the work of its shared services teams such as IT, HR, admin, and finance as mentioned above.
Your support enables Ummeed to carry out this much needed work towards creating a more inclusive and empowering society for children with and at risk of disabilities and their families in India. In case Ummeed is able to tie up local/ programmatic funding for all its costs, we would request that the funds are used to strengthen our self-sustenance fund towards building long-term sustainability.
We look forward to your support and would be happy to provide any further details that you may need.
Kindly note that all contributions to Ummeed are eligible for deduction u/s 80G of the Income-tax Act, 1961 (Provisional Approval Number: AAATU0678EF20214, Date of provisional approval: 31/05/2021: Assessment year or years for which the trust or institution is provisionally approved: From AY 2022-23 to AY 2026-27)
What do you get in return?
Thank you in advance from the entire team at Ummeed! You can also reach out to us on info@ummeed.org for further information.
We look forward to your support!
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