- Note from Team Ummeed
- The Kal Aaj Kal Conference
- Building Back Better Awareness Campaign
- The Walk for Ummeed 2021
- Ummeed's COVID-19 Response
- Research Article in International Journal of Contemporary Pediatrics (IJCP)
Note from Team Ummeed
The past year has not been the easiest! While it came with its own set of challenges, it also provided us with opportunities to bloom. We decided to focus on the latter and not let the former taper our spirit.
This newsletter features some of the highlights of the recent past, and as you will read despite the odds it has been special.
We share with you our response to the COVID-19 pandemic and how our children and families have worked with our therapists and pediatricians to overcome the challenges posed by it. One such example are the videos put together in four languages by the Early Childhood Development and Disabilities (ECDD) team. Titled ‘Ways to support caregiver mental health’ and ‘Activities to promote early childhood development’, the videos were spotlighted on the WHO caregivers website (www.nurturing-care.org).
In December 2020, Ummeed held the Kal Aaj Kal Conference, an empowering convention where over 200 community health workers and other professionals from various organisations gathered to discuss and share their concerns and ideas about early childhood development and disability.
On 3rd December 2020, the International Day of Persons with Disabilities, dovetailing with the UN’s theme of #BuildingBackBetter in a post COVID-19 world, we began a month-long awareness festival of self-advocacy.
Our flagship annual fundraising event, the 55 KM Walk for Ummeed pivoted into various versions including a Day Walk in Mumbai, a ‘Virtual’ Walk and a Walk in Goa. Over 80 walkers – young and old – successfully participated in the Walks.
Lastly, we are thrilled to share an article by two Ummeedians in the International Journal of Contemporary Pediatrics.
2021 promises to bring hope and joy, and we wish you and your loved ones a Happy New Year!
The Kal Aaj Kal ( Yesterday, Today & Tomorrow ) Conference
Conducted by Ummeed, the conference was addressed each day by a different guest speaker (Rati Forbes, Forbes Foundation; Rushda Majeed, Bernard Van Leer Foundation; Tarun Dua, World Health Organisation), before being divided up into smaller groups in breakout rooms, which facilitated more interpersonal discussion. Each of the three days corresponded to one of the words in the name of the conference, and the discussion centred around the theme.
On the first day (‘kal’ – yesterday), the topic of conversation traced the beginnings of the participants’ careers of working with children with disabilities. Several of the women spoke about how their early days in this field helped them widen their world-view and also re-evaluate their own lives. On the second day (‘aaj’ – today), discussion turned to how they were coping – or had been coping – during the pandemic. They spoke about keeping in touch virtually, allaying parents’ new lockdown-born fears (especially with the children being home more than ever before), and in general helping in any way they could. On the third day (‘kal’ – tomorrow ), the last day, participants discussed the future, what their hopes were and what values they hoped to carry with them as they continued to work further in their careers.
VOICES FROM THE CONFERENCE
Asha Kasale and Jyoti Kadam (Forbes Foundation): Our lives had earlier revolved around our children and families. When we began to work, it was the first time we stepped out of the house for a reason that did not concern our families. Further, as we continued in this field, we realized our advantage as women: other women were far more comfortable opening up to us about their struggles.
Chandrakant Shembade (Snehalaya): I remember the incident of a young child I once met who I was sure was hearing-impaired. I took the child (along with the child’s parents) to a doctor who declared the child was not impaired, and insisted even when I tried to argue the point; he then proceeded to get offended that someone should question him, a qualified medical professional. Later, I had a test done for the child, and it turned out that he was, in fact, deaf. That was when I realized that even highly educated doctors are often untrained in early childhood intervention. This is a skill I would especially like to see spread in rural areas, where such children are often automatically grouped as ‘mentally retarded’.
For more information on our work and trainings in early childhood development and disabilities, please contact Anushree at anushree.sane@ummeed.org
Building Back Better AWARENESS Campaign
On the International Day of Persons with Disabilities (3rd December 2020), Ummeed announced its #BuildingBackBetter campaign, a festival of self-advocacy all through the month by young people with disabilities and their families on building a better post COVID-19 world.
Supporting the UN’s theme for International Day of Persons with Disabilities 2020 - “Building Back Better: toward a disability-inclusive, accessible and sustainable post COVID-19 World”, we invited young people with disabilities and their families to send written messages, poetry, art, music, dance and cooking videos and just about anything to be featured on our Facebook, Twitter and Instagram handles. The response was overwhelming!
Total Campaign Reach: 2,27,116
Total number of posts: 43
Content generated through Open Call: # of Posts: 36; Reach: 1,05,261
The Ummeed team received several moving emails and messages from children with disabilities and their families which recorded their appreciation and gratitude for providing a platform and an opportunity to show the world that they were more than their ‘disability’, proving the need for such a platform.
We also received feedback that the campaign helped change the general perspective of the lay public on what children with disabilities can do. For many, it shifted the general discourse around disability from what ‘I can’t do’ to what ‘I can do.’ Through this self-expression, many young self-advocates felt a sense of agency and empowerment .
For more information please email us at communications@ummeed.org
The walk for UMMEED 2021
The new year began with a new spirit at Ummeed.
Despite the concurrent challenges of COVID-19, the passion of Ummeed Walkers remained undeterred. On 10th January 2021, we successfully conducted our fundraising event – the 33 KM South Mumbai Walk with care, safety and immense zeal. We saw a great number of avid walkers setting out on the streets of Mumbai from different parts of the city to show their support of our cause. The walkers who couldn’t make it to the Mumbai Walk, had the opportunity to participate in a ‘Virtual Walk’. The following weekend, a band of our faithful walkers made it back to Goa, the original venue of our annual 55 KM Walk.
Number of walkers: 80+ (Mumbai, Goa and Virtual)
Cumulative Kms: 2,000 Kms
For more information on the walk for Ummeed, please get in touch with Praveen at praveen.taula@ummeed.org or Poulomi at poulomi.dave@ummeed.org
UMMEED'S COVID-19 RESPONSE
Children with disabilities and their families have been one of the most vulnerable populations during the COVID-19 crisis. Being in lockdown has created a unique set of challenges for them. Ummeed recognized this and its professionals have worked closely with families as well as with past and new trainees to help them cope with these challenges. This has required innovation at Ummeed’s end too, such as providing all of this support online and being there for those most in need in diverse ways.
CLINICAL SERVICES
Early in the lockdown, Ummeed’s clinical team quickly adopted the online model of reaching out to families and supporting them, whether to provide basic requirements such as food and medicines, or to address more complex needs through clinical consults. Over the April to December 2020 period, we provided 6,700 sessions to around 800 children.
Our facilities were opened in July 2020 in case families wanted to opt for in-person consultations or sessions with a therapist and continue to remain open.
TRAINING SERVICES
The team was able to quickly convert a significant amount of its training content to the online format, reaching out to old and new trainees across the country! Over the April to December 2020 period, we conducted over 100 skill-building and long-term trainings for about 2,000 participants and over 100 sensitization workshops attended by over 8,500 participants.
AWARENESS AND ADVOCACY
Since the beginning of the lockdown, the Ummeed team has been sharing targeted resources for caregivers of children experiencing disabilities, on how they can cope as well as support their child's development during these challenging times. This included awareness campaigns on disabilities across our social media channels and awareness sessions on the Zoom platform. The Early Childhood Development and Disabilities (ECDD) team put together videos in four languages: Hindi, English, Marathi and Gujarati on two topics: ‘Ways to support caregiver mental health’ and ‘Activities to promote early childhood development’. These were spotlighted on the WHO caregivers website (www.nurturing-care.org).
Research Article in IJCP
We are thrilled to share that the research article "Perceptions, attitudes and practices of physicians regarding use of complementary and alternative medicine (CAM) in autism spectrum disorder," was published in the International Journal of Contemporary Pediatrics (IJCP), authored by our two Ummeed developmental pediatricians: Dr Ashwini Marathe and Dr Koyeli Sengupta.
Where there is no cure there are a million treatments. Families dealing with a chronic condition like autism and desperate for a cure often turn to their physicians as a trusted source of information regarding various management modalities, including the non conventional CAM options.
The results of our survey-based study on perceptions and practices of Indian physicians regarding these modalities revealed that most physicians perceived CAM use in their families to be lower than what was reported in literature. Also, most don't ask about, opine or discuss these options with families.
This could be due to inadequate doctor-patient communication and limited awareness and knowledge on the subject, a challenge in understanding the true extent of CAM use and in helping families by sharing information.
Other barriers experienced in practice such as lack of time, training and resources were also reported.
For more information please get in touch with Dr Ashwini Marathe at ashwini.marathe@ummeed.org
Thank you for your love and support!
We would love to hear from you and welcome feedback on communications@ummeed.org