- Note From Team Ummeed
- Clinical Services Update
- Family Resource Center
- Autism Services Update
- Ummeed Inclusion Fellowship Program (UIFP)
- Developmental Disabilities India YouTube Channel
- Walk For Ummeed 2022
- Research at Ummeed
NOTE FROM TEAM UMMEED
Warm Greetings for this Festive Season from all of us at Ummeed!
We bring you an update of our recent activities and programs. As the threat of the Pandemic recedes, Ummeed’s face-to-face engagement has increased. Ummeed continues to work on strengthening its clinical and training programs for families of children with disabilities and professionals working with them, focusing on creating safe and welcoming spaces highlighting diversity, equity and inclusion.
Our work continues to be innovative with family-centered care at the forefront. As we say, all children with disabilities should be included in society and can reach their maximum potential.
In the spotlight are updates on:
Ummeed’s Clinical Services: This includes a return to in-person activities at our clinical space and the use of adaptive equipment.
Family Resource Center (FRC): This update encapsulates the recent activities of the FRC - a safe and accepting space where families and professionals can work together to help all children with disabilities and their families.
Autism Services Team: The Autism Team has launched a new training which focuses on post-diagnosis for parents of children with Autism and the scaling up of its WHO-CST program for caregivers.
Ummeed Inclusion Fellowship Program (UIFP): The UIFP’s pilot cohort run by the School Outreach team has not only impacted the fellows but also the school systems with whom they have been working.
Developmental Disabilities India YouTube Channel: Ummeed has launched this YouTube channel which is dedicated to awareness on developmental disabilities for parents of children with disabilities and for professionals working with children with disabilities. Don’t forget to subscribe!
Walk for Ummeed 2022: Despite the Pandemic, our flagship fundraising event continued to be held and in not one but two iterations! A mix of physical strength, family and friends bonding and amazing sceneries.
Research at Ummeed: Over the past two years, several research papers and studies of Ummeed's work were published in reputed journals. We share the summaries of two recently published papers which capture Ummeed's innovative and important work.
CLINICal SERVICES UPDATE
The Ummeed clinic is now functioning on all days but still follows COVID-related safety norms. The services continue to be offered in a hybrid model as some families choose to receive online sessions – but many families have eagerly returned to the clinic and resumed in-person therapies.
After two years, we are also back with in-person batches of our Early Intervention Center (EIC) program – which helps children with disabilities become school ready. Currently, we run three face-to-face batches and one online batch, for children and families living outside Mumbai in areas which do not have access to such services. It also helps Ummeed retain and make use of the skills learnt from the online model in the past two years – and even incorporate some learnings from the online batches such as sharing short, pre-recorded training videos that caregivers can watch as per there convenience.
Adaptive Equipment
Certain developmental disabilities affect a child’s ability to move, maintain balance and posture, and communicate. Thus, the child requires orthosis/assistive equipment, learning and communication aids. These devices are often customized and expensive and include ergonomic chairs and tables, pencil grips for better hand positioning and movement, tripod stand, noise cancelling earphones, ankle foot orthosis, etc. Ummeed procures these devices for children with special needs who cannot afford them – to enable their participation and movement. In the past two years Ummeed had also acquired some therapeutic and play-based equipment and diagnostic test kits for face-to-face sessions which are now being used since children are coming to the clinic for occupational therapy and physiotherapy sessions. The equipment makes our occupational therapy, speech therapy, physiotherapy sessions and consults with developmental paediatricians more effective.
For more information on Ummeed’s Clinical Services, please visit Ummeed’s website
FAMILY RESOURCE CENTER
“Families aren’t just recipients of services, but they are experts as well and should have a say in their care.”
The Family Resource Centre (FRC) was started in 2021 with the objective of providing a space for families to connect with each other and take the lead in guiding and supporting other families like themselves. The FRC team comprises of caregivers, who partner with other caregivers and collaborate with Ummeed professionals to work under the three verticals of Guidance, Support and Advocacy.
The FRC has created several resources for families including disability information in a parent voice on Autism and ADHD; a new monthly parent support group ‘Tea & Talk’ for parents more comfortable in English; and a new training program ‘RAISE’ that is focused on creating awareness among parents on rights and approaches for inclusion in the school space. The FRC along with the Mental Health team publishes a monthly newsletter ‘Fursat Mein’, which focuses on leisure and recreation.
All training programs and workshops carried out by the FRC include caregivers who participate as co-trainers and share their stories and advice. These include the ‘Know Your Rights’ workshop which it co-delivers along with the Social Work team, and including the caregiver voice in trainings such ‘Let’s Get Started’ with the Autism team.
For more information on the Family Resource Center, please contact frc@ummeed.org
AUTISM SERVICES UPDATE
‘Let's Get Started’
Ummeed has launched a new workshop called ‘Let’s Get Started: Next Steps after an Autism Diagnosis.’ This is a workshop designed for caregivers of newly diagnosed children with Autism. It is offered every month (on the first Friday of each month). Some common misconceptions about Autism Spectrum Disorder are discussed and simple strategies that can be immediately implemented at home are suggested. The workshop is conducted by speakers from the Autism Intervention team, who are joined each month by members from the Family Resource Center team; thus providing an added layer of a parent perspective from someone who has been through the journey of receiving an Autism diagnosis for their child. This session is designed to be interactive where all the attendees are encouraged to share their concerns and ask questions, with the hope that if caregivers are overwhelmed with the diagnosis, they have a platform to share their experiences and receive support from the others in the group.
WHO-CST Program
A year or so ago, two therapists from the North Goa District Hospital, Mapusa, Goa attended the Autism Intervention Training Program (AITP) at Ummeed. In 2022, the therapists from the Center received training on the WHO Caregivers Skills Training (CST) program and have started training caregivers of children with developmental disabilities. Recently, the health minister of Goa, Mr. Vishwajit P. Rane inaugurated the Autism Intervention Center and WHO-CST program at the hospital and has encouraged the hospital to create awareness among caregivers to avail of these services which are provided by the hospital at no cost.
Two members of Ummeed’s Autism Services team, Disha Zaveri and Sanchita Mahadik have become WHO-CST Regional Focal Point Trainers and will train participants from different countries of a particular region on the WHO-CST program.
For more information on Autism Services at Ummeed, please visit Ummeed’s website
UMMEED INCLUSION FELLOWSHIP PROGRAM (UIFP)
The Ummeed Inclusion Fellowship Program is an immersive two-year experience during which identified Inclusion Champions are placed in different under-resourced schools within the city of Mumbai. Through this experience, Fellows not only get exposed to the grass root realities of inclusion (or lack thereof) in schools, but also develop skills to become strong advocates of inclusion within and outside the classroom. Identified Fellows are teachers/mental health professionals and special educators. A key pre-requisite is that they are committed to the cause of school inclusion and willing to work with diverse stakeholders within the school and have experience of working either in the school context or with persons with disabilities. The current cohort of the UIFP consist of six fellows placed in three schools.
The next cohort will begin in 2023. To know more please write to fellowship@ummeed.org
The Fellowship has brought so much hope and joy while working in the field of education, that it has given me a perspective of endless possibilities. It has not just helped me to work closely with the school system and the stakeholders, but has also guided me to build relationships with them and understand their needs, and support those who may need strong voices for support.
- Ankita Naik
I have seen immense growth in my life and work, since the time that I have joined the Fellowship. I have learned how to collaborate and work in a team with people. I received a lot of support when I shared my journey and experience openly with the larger community. This Fellowship and the Ummeed family has helped me understand myself deeper and explore my potential to the best.
- Tayzeem Rasool
The Fellowship has made me reflect on everything that I'm engaging with and think about what went well, what could be done differently and the next steps. It made me believe that Love is one of the most important things in any relationship and anything is possible if we work with Love. The Fellowship created possibilities for me to separate the problem and the person and operate from the lens where I believe that we all can give and receive support.
- Sadekha Sheikh
DEVELOPMENTAL DISABILITIES INDIA YOUTUBE CHANNEL
Launched by Ummeed, Developmental Disabilities India is a new YouTube channel dedicated to awareness about developmental disabilities for parents of children with disabilities and for professionals working with children with disabilities.
It is a publicly available free resource and will host a range of explainer and tips-based videos about disabilities for parents and professionals.
The first leg of the channel will see a gamut of 25 topics being covered in English and Hindi over the next six months. These videos will feature: developmental pediatricians, therapists and special educators from Ummeed; the Family Resource Center at Ummeed - a team of parents of children with disabilities; and external parent experts.
Through this channel, we hope to create a reliable space for information and conversation around developmental disabilities in India.
To receive regular updates, please subscribe to the channel
WALK FOR UMMEED 2022
As it is said, the smallest act of kindness can have the biggest impact and we experienced that in our annual flagship fundraising event last year, the 55 KM WALK FOR UMMEED in Goa. Keeping the Pandemic condition in mind, Ummeed also hosted a 35 KM WALK FOR UMMEED in Mumbai. People participated in huge numbers; interestingly, we had virtual walkers too who joined in high spirits. Over 1,550 km were covered across the 3 events while creating awareness for the need to support children with developmental disabilities and their families alongside raising funds.
We will continue with our mission to raise funds and awareness on children with disabilities. The 55 KM WALK FOR UMMEED will be held in Goa on 21 January 2023 and we look forward to welcoming walkers in large numbers.
To participate and know more, please contact Praveen on +91 9833340064, Yugma on +91 9819545069 or email on 55KmWalkForUMMEED@ummeed.org
Research at Ummeed
Children with disabilities and their families were one of the most vulnerable populations affected by the COVID-19 crisis and being in lockdown created a unique set of challenges for them. Ummeed recognized this and its professionals worked closely with families as well as with past and new trainees to help them cope with and meet these challenges. Ummeed’s team made innovations and developed new and hybrid models of working, providing support online and being there for those most in need in diverse ways. These approaches and new perspectives have been captured and published in several journals of repute, which may be accessed here.
We share the summary of two studies that will resonate with your personal or professional life, and we encourage you to access and read them:
Study 1:
Providing Services for Children with Developmental Difficulties, Delay or Disability – Early Diagnosis and Interventions at the Community Level
Publication name and date: Indian Pediatrics, October 2021
Lead Researchers: Roopa Srinivasan, Ashwini Marathe, Vibha Krishnamurthy
Summary:
This paper provides an overview of some of the work being done in the Early Childhood Development (ECD) space in India including its successes and limitations. This context is provided to explain the role played by Ummeed’s Early Childhood Development and Disabilities team in addressing some of these limitations. Two of the team’s programs, the Early Childhood Champions, and the Child Development Aide program build capacity in community health workers to work with caregivers in the community to support their child’s development.
Community health workers learn about best practices to follow while working with families and children, the use of standardized tools to identify developmental difficulties in children, risk factors to child development and ways to help caregivers support their children’s developmental needs. These training programs therefore supplement the work done by ECD programs that primarily focus on the nutrition, health, and safety of the children. The paper provides a detailed description of the programs including the structure, duration, content, and reach.
To know more on this paper and other research conducted by the Ummeed team, click on the link below.
Study 2:
Physician Voices on ECHO Autism India — Evaluation of a Telementoring Model for Autism in a Low-Middle Income Country
Publication name and date: Journal of Developmental & Behavioral Pediatrics, August 2022
Lead Researchers: Koyeli Sengupta, DCH, MA; Leera Lobo, DNB; Vibha Krishnamurthy, MD, FAAP
Summary:
Most children with developmental disabilities in India do not receive the right intervention early. Ummeed believes that an early diagnosis is key to better outcomes for such children and their families. Pediatricians are often the first point of contact/resource for families and hence it is important for them to know how to identify disabilities early and guide families toward appropriate interventions.
ECHO Autism is an online mentoring program for physicians that was started in the United States to build skills and knowledge in early diagnosis of Autism and its management. Ummeed has adapted the model to the Indian context. A study was conducted to evaluate whether the program was able to achieve what it set out to do.
This research article explains how the ECHO Autism training program was conducted and how it has benefitted the participants. The program involved 13 biweekly online sessions with both teaching and case-based discussions, led by an ‘expert’ hub team of developmental pediatricians, therapists, and a parent ‘expert’ and comprised of reflective discussions, respectful mentoring, and learning from the experiences of the parent in the training team. The program saw the participation of 62 physicians, including 59 pediatricians across 2 cohorts (2019–2020) from India and other neighboring countries like Nepal and Sri Lanka as well as Turkey.
The outcome showed an improvement in the scores of participants on knowledge and confidence in the diagnosis and management of autism. It was found that this kind of online training program for physicians effectively improves access to early diagnosis and better care for children with autism and their families by positively influencing pediatricians’ knowledge, attitudes, and practice behaviours.
To know more about this study and other research conducted by the Ummeed team, click on the link below.
Banner Design: Detail of Drawing by Ananya Broker Parekh from Jugaad: A Little Book of Know-Hows From Young People on Mental Health, August 2020
Thank you for your love and support!
We would love to hear from you and welcome feedback on communications@ummeed.org