Images used for representative purposes to protect identity.
Names changed and images used for representative purposes to protect identity.
Priya is a cheerful and energetic 9-year-old girl with cerebral palsy. The cerebral palsy limits how far she can walk, but not how much fun she can have!
Priya’s family of 4 (mother, father, brother Neel, and Priya) are surviving on their limited savings, struggling to make ends meet because of the loss of income due to the lockdown. But Priya brightens up their days. She and Neel are a team – playing cricket, ball, pretend games – and often make their parents laugh by their antics!
Priya’s parents are committed to making sure her development does not suffer during the lockdown. They have learned to do simple things like placing dishes at meal times or paints during artwork time, just a little out of the reach for Priya. That way, she has to stretch to get to them – part of her home physiotherapy routine!
Despite the challenges at home, Priya’s mother has made sure that they continue their physiotherapy sessions at Ummeed through Whatsapp. “Priya is shy, but she loves her therapist, Ruchita, who works hard to make the video sessions fun for Priya,” says her mother. The family is sure that Priya will keep her “can-do” attitude, and that inspires them too.
Just like Priya, several children with developmental disabilities are being supported by their caregivers at home during the lockdown, so that they can continue making progress on their development goals. Ummeed also has modified its method of intervention to a virtual model, through which it continues to reach out to children like Priya and their families.
You can help Ummeed support children like Priya and their families, during these tough times. To donate, please click here.
Images used for representative purposes to protect identity.
Names changed and images used for representative purposes to protect identity.
Sushila, a community worker employed with the SETCO Foundation, has been visiting 16-month-old Deepa and her family to promote and monitor her development. Her frequent home-visits before the lockdown have resulted in Deepa’s mother becoming more aware and alert about Deepa’s growth and development.
During the lockdown, Deepa’s mother realized that while many children of Deepa’s age were walking without any support, Deepa needed help from her mother to take even a few steps. Deepa’s mother reached out to Sushila for guidance and support on the phone.
Sushila had learnt the Guide for Monitoring Child Development tool during her training at Ummeed, and based on this, recognized that Deepa was indeed experiencing a developmental delay. Thanks to her home visits, Sushila was well aware of Deepa’s home environment. She advised Deepa’s mother on how she could use simple objects available at home to support Deepa in walking, and not let the restriction in outdoor movement because of the lockdown come in the way of Deepa’s development.
Based on Sushila’s recommendation, Deepa’s mother now sits at one end of their folding bed, while Deepa is at the other. With affectionate words and exciting tones, she encourages Deepa to hold the sides of the bed and take a few steps. And Deepa has been able to do this a few times now, without her mother’s physical support!
Ummeed trains community-based workers like Sushila at many organizations like SETCO Foundation. They are working hard through this pandemic to continue supporting children like Deepa from under-resourced communities. You can read more about this work.
You can help Ummeed support community-based workers and organizations during these challenging times. To donate, please click here.
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.
1. CLINICAL SERVICESEarly 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.
During the FY 2020-21, 9,000 sessions were provided to around 920 children.. This included one-on-one sessions, group sessions, fun clubs, walk-in family support groups … all provided online.
Ummeed also put together a best practices document for online clinical services, that can be used as a reference document by other professionals and organizations. It can be accessed here.
Towards the end of June 2020, we started preparing our center for face-to-face consultations with children and families, and this included precautionary measures to disinfect and sanitize our facilities, and to make it safe for our therapists, staff, children, and families to visit. Our clinical facility was opened in July 2020 in case families wanted to opt for in-person consultations or sessions with a therapist and it continues to remain open.
2. TRAINING SERVICESThe 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!
During the FY 2020-21, over 100 skill-building and long-term trainings were conducted for about 2,000 participants and over 100 sensitization workshops were attended by over 8,500 participants. Topics ranged from supporting the mental health of children and caregivers, using play to engage with children, toilet training, understanding/managing challenging behaviours in an online classroom, and Know Your Rights, amongst others.
As in the case of online clinical services, Ummeed put together a best practices document for online trainings too, that can be accessed here.
3. AWARENESS AND ADVOCACYSince 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 a multipronged awareness campaign on Autism and Down Syndrome across our social media channels with an unprecedented reach. In June 2020, we launched an initiative towards 'Nurturing the Mental Health of Caregivers' which included several awareness sessions on Zoom, a resource book called "Hamaare Jugaad", a podcast, and a partnership with an online platform called Parentune.
All these resources can be accessed in our Resource Library.
An article titled “Creative Responses to the COVID-19 Pandemic: Shared Stories of Caregivers and and Mental Health Practitioners” was published in August 2020 by Ummeed in the monthly journal of Mumbai University on mental health responses during the COVID-19 pandemic.
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 in September 2020.
In October 2020, the Mental Health Awareness Month saw more than 10 workshops advocating for the rights of love, pleasure and friendships for children with disability.
The Kal Aaj Kal ( Yesterday, Today & Tomorrow ) Conference on the 3rd, 4th and 5th December 2020 was a coming together of over two hundred community workers from all over India - from urban slums to rural low resource areas - for the first ever virtual conference in India for community workers in Early Childhood Development. It was conducted entirely in Hindi and discussions ranged from how the community workers were coping – or had been coping – during the pandemic as well as on how to allay 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 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”, Ummeed 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 and the campaign reached more than 200,000 people on our social media handles.
In March 2021, Ummeed launched the #MeetTheFRIENDships campaign which involved creative documentation and celebration of the friendships of young people with disabilities through videos and picture blogs. The initiative provided a platform for young persons with disabilities to share their friendship stories and for the general public to get a first-person narrative of the experience of being friends with these children, breaking stereotypes through the lovely, seemingly ‘everyday-type’ video stories.
Given the continuing restrictions imposed due to the COVID-19 pandemic, this year’s World Autism Awareness Day (2 April 2021) and Autism Awareness Month campaign primarily leveraged social media and online platforms.
It was focused on two themes:
Early Identification, Signs, Support and Intervention, and
Empowerment and Self-Advocacy
We used creative ways to showcase the themes through videos and statics, a ‘live’ Instagram session and by publishing a print advertisement in three regional languages (Marathi, Hindi and Gujarati) highlighting the need to ‘learn the signs and act early’.
The SELebrating Inclusion Summit took place on 23rd and 24th of April 2021. It was focused on socio-emotional learning (SEL) and inclusion. It brought together organizations, policy makers, schools, educational institutions, families, educators and any individuals working towards making the education system more inclusive, safe and focused on the wellbeing of children with disabilities.
