With help from a mobile app, almost 41000 rural Indian children have been screened for developmental delays since 2014. During that process, more than 1100 children were found to have delays in their development, and of those children, 458 were diagnosed with CP.
This same app is empowering the in-home delivery of therapies needed to support these children by families and Community Rehabilitation Workers (CRW).
Raman is a visionary behind Amar Seva Sangam (ASSA), the Indian non-government organisation behind the successful Mobile Village-Based Rehabilitation Initiative (mVBRI).
He says the project grew from an identified need that children in rural areas with developmental delays like CP lacked access to trained professionals and appropriate programs.
“Long transportation times to urban areas where the programs existed was a major problem with this,” says Raman.
ASSA had projected that there were approximately 22,500 children with CP, and a further 31,500 children with other disabilities living in India’s rural Tamil Nadu.
It was the serious lack of access to early intervention services for those children that lead ASSA to create a life-changing program to bring the much-needed therapies straight into the child’s own home.
They began with training village health nurses and Anganwadi (preschool) workers to identify signs of delayed development before referring diagnosed children to the ASSA program.
“On top of that, we began regularly conducting camps where our CRWs are the ones who screen children at primary health centres and Anganwadi for developmental delays,” says Raman.
“To address the lack of expert rehabilitation professionals in rural areas, we decided to train lay workers as CRWs who then use the mVBRI app to connect with specialists. Those specialists are the ones who ultimately monitor and facilitate treatment,” he says.
The CRWs receive training to provide treatment in all domains of development including:
- motor function
- speech development
- congnitive function
- behavioural development
- emotional development
- functional/occupational development.
They also provide support and coaching to parents who are active participants in the weekly home-based sessions.
What happens once a child is screened?
Raman says that properly trained rehabilitation specialists (such as physiotherapists, occupational therapists, speech therapists and special educators) conduct the initial assessment of the child.
Those assessments are then fed into the mVBRI app along with specific treatment goals and therapeutic protocols to be followed.
These are then viewed by the CRW and actioned during their regular visits to the child at home.
The mVBRI app enables CRWs to communicate with rehabilitation specialists to solve any issue for the child. They can share photos and videos via the app, and use it to video conference with specialists when needed.
While the child will see their CRW once a week, they still have monthly visits from rehabilitation specialists.
“These are joint visits with the CRW which not only provide therapy for the child, but also provide additional training for parents and CRWs,” Raman says.
Family-centred therapy is the focus of the program
Through the mBVRI early intervention program, families set goals for their own child using the Canadian Occupational Performance Measure.
Family outcomes – including caregiver strain, empowerment and child-parent interaction –are measured every six-months along with new goals and therapy plans from the rehabilitation specialists.
Raman says an important component of all this is the peer support component to the program for parents.
“It enables them to connect, learn and provide support to each other,” he says.
It’s a big program with big results
To deliver the mBVRI early intervention program, ASSA employs 88 staff members per cluster of 1000 children at a cost of $381 Canadian dollars per child.
But it is undeniably a big program with big results as you can see below.
To-date, eight major
achievements have come from introducing the mVBRI app to rural India’s Tamil
- 40,733 children in the community were screened for developmental delays
- 1,102 of those children were diagnosed with developmental delays, including 458 children who were diagnosed with CP. Those children and their families have received early intervention therapies through the program
- 39,423 people in the general community have improved awareness on child development, disability and CP as a result of the community awareness programs which also form part of this initiative
- 75 per cent of children in the mVBRI program are enrolled in school by age 5, compared to 55 per cent of children in the rest of Tamil Nadu
- The lives of caregivers have been significantly improved within 18-months of enrolment in the program:
- 74 per cent have decreased caregiver strain
- 73 per cent have an improved sense of family empowerment
- 62 per cent have improved caregiver-child interaction when measured using validated tools
- The program exceeded the gold standard trajectories in the Gross Motor Function Measure – an internationally validated clinical measure designed specifically to measure changes and the development of gross motor functions for child with CP –developed by Rosenbaum et al 2002 for children in North America who receive early intervention therapy.
- A statistically significant improvement in mobility, self-care and cognition was achieved for the children in the program, including for children with CP
- A statistically significant improvement in expressive and receptive language was achieved for the children in the program, including for children with CP.
According to Raman, there are close to 54,000 children in Tamil Nadu between the ages of 0 and 6-years who live with disabilities. Close to 24,500 of those children have CP.
Thankfully, further funding from the Tamil Nadu Government and Grand Challenges Canada (GCC) is set to enable the program’s expansion.
This funding – worth approximately $600,000 USD – will mean that ASSA can treat an additional 2,100 children with developmental delays for one year. Close to 900 of those children have CP.
The Tamil Nadu Government have also committed to funding the expanded mBVRI operations beyond the initial 12-month period.
And when all that expansion is done, ASSA will assist the Tamil Nadu Government to recruit other non-government organisations (NGOs) to deliver the mBVRI in districts outside those serviced by ASSA.
Raman says their organisation will take on a training role to onboard other NGOs, showing them the way to deliver the mBVRI early intervention program.
“The priorities in this next phase for us will include strengthening our team by hiring leaders to help scale up the efforts with Government and other NGOs,” he says.
“We will upgrade our technology to an open source platform because that will make it cost effective for others to adopt.
“We’re also going to enhance our training and resource manuals, analyse our findings from the next implementation phase, and share that with government so they can see the high impact of the program.
“It’s about ensuring sustainable funding for the mbVRI,” says Raman.
Aiming even bigger, ASSA have planned:
- An international conference to bring together NGOs and governments from other parts of India and across the World
- Work on securing funding for a home-based early intervention training centre
- Implementation of the mBVRI app in an urban district of India where Government currently run early intervention centres.
It’s ASSA’s hope to reach all children with developmental delays in Tamil Nadu by 2030.
Amar Seva Sangam won the Major Award for Medical / Therapeutic in the 2019 World Cerebral Palsy Day Awards.
To learn more about Amar Seva Sangam, visit their website.