Background
This health intervention involves collaboration with disability organizations in small towns to provide therapeutic management for the children with disabilities. Currently, the project is being implemented in collaboration with Abha Seva Sadan, Jharkhand, a multi-therapy charitable health centre that works with children with disabilities to provide therapeutic services like physiotherapy, occupational therapy, speech therapy and other allied health services like acupunctured, homeopathy free of cost through the support of trained paraprofessionals. The project is aimed at children who have neurodevelopmental disabilities- disorders that affect the nervous system and tend to last for an individual’s lifetime. Project Noor has partnered with medical professionals- physiotherapists, speech therapists and occupational therapists, and special educators to carry out assessments and monitor the development of the children enrolled under this project.
The key was to connect with community based organizations already having a presence in rural areas. Such organizations are present in most parts of our country. Under this project ABS in Jharkhand that already provides services to 70-80 children with disabilities has been selected. Based on family checks, children who would be enrolled for the project were identified by ABS.
Dr. Shabnam Rangwala, Managing Trustee and CEO
The first round of assessments which involve an initial evaluation of the children’s health was carried out by Community Health Workers (CHW) employed ABS. They have been trained in disability management by Project Noor. They collected details on the medical history of the child, physical abilities, communication, play and social skills etc through a survey with the parents, conducted in person. This data is then passed onto the therapists, who refer to it, verify and fill in any gaps in information. The medical professionals then carried out a detailed assessment virtually, working closely with the children to understand their motor behaviour, vision, hearing, communication, cognition and other abilities. Therapist then planned goals in consultation with the parents. The outcome measure for goal planning is done on a standardized measurement scale known as the ‘Canadian Occupational Performance Measure’. The current performance as well as their satisfaction in that performance are both rated on a scale of 1-10. The assessment conducted by the therapists usually involves observing the children and speaking to the parents over at least 2 to 3 sessions.
I converse with the parents and learn a lot about the child. A parent knows his/her child the best and information given by them helps me t plan my goals. I need to ask questions like; whether the child is able to eat well, whether he/she can feed all by himself/herself, can drink water etc- some of these things, I ask and some, I get to know by observing the child. When I say ‘observation’, I mean asking the child to do the activity I want to observe so if for eg if I see in the CHW assessment that the child is walking I would directly as the parent to show me how the child is walking. I can then understand whether the child is walking independently, whether there is any mobility aid used or whether the parents are helping the child walk.
Dr. Nigamaja Hariharan, Physiotherapist
Each CHW has been allotted 5-6 children, pre-assigned to him/her so that every week they follow up with the same child. Each CHW works with one or two therapists based on the time schedule available to the professional therapist.
The initiative was initially planned for a period of 6 months but now has been extended to 9 months. The aim to assess each child on their goals at three points of time namely; baseline midline and end term. Presently, the two such rounds have been completed once during February/March and one in July/August
The Intervention Model
Passionate about reaching out to the community to drive change, Dr. Shabnam has worked on community projects in the field of disability with reputed organizations like UNICEF and CBM through her work with ADAPT (formerly The Spastics Society of India) led by Padmashree Dr Mithu Alur.
Given the limited number of medical professionals available, she saw the need to devise an intervention model that can be replicated so that children in highly remote areas can be reached. She states that for this to be replicable, there has to be a system of accountability at a local level. Once that is created, it will help expand the scope of reach to children with special needs
As an occupational therapist, reaching out to the community has been something that has always attracted me. Since I got the opportunity to work on many community based projects through my work at ADAPT, I understood the need for a model/module to reach the child in the smallest village. The pandemic really gave me the opportunity to think in this manner. In this model, I’m trying to see that we are connecting to the beneficiary through a CBO. This model would create some degree of accountability at the local level. Having someone accountable at the local level will ensure that the activities continue even when the pandemic is over or when the professional organization exits.
Dr. Shabnam Rangwala, Managing Trustee and CEO
As a part of this model, she aims at implementing evidence-based interventions. International evidence shows that when a goal is planned by the family, there is more compliance to the activities being told to a child. If a family feels that the most important goal is for the child to sit properly, then they will be more willing to practice what is required. Hence, most of the goals are planned based on the parents’ perspective.
The rationale for creating this model is connected to a policy of the Government of India called the ‘Rashtriya Bal Swasthya Karyakram’ (RBSK). Launched under the National Health Mission (NHM), the scheme aims to provide early health screening for children and intervention services from birth to 18 years of age for the following conditions: Defects at birth, Deficiencies, Diseases, and Developmental Delays including disabilities. It is expected that around 27 crore children will benefit from this scheme. However, Dr. Shabnam explained that the work done with children in the category of Development Delay has been limited, barring a few states like Tamil Nadu and Maharashtra. Therefore, Project Noor decided to intervene in this manner. Given that children may rarely outgrow neurodevelopmental disabilities, there is a pressing need for care and attention to be given to them.
The Challenge
The project was set to be completely virtual and the team was already using technology to implement it. Beneficiary data and findings were being recorded using paper and pen and then were collated on Excel, making it a cumbersome exercise. Goal planning for the children was also done on paper. Hence, there was a need to leverage technology for documentation of data also. This led to a partnership with DataOGram
Being a virtual project, I felt the need to use technology to supplement our assessments also. That’s how I connected with DataOGram to see how we could use the forms that we used in pen and paper format on to the app
Dr. Shabnam Rangwala, CEO
The Impact
- Comprehensive, efficient assessment and monitoring of child health
- Intuitive dashboards to measure outcomes
- Access to child health history through an organized record of follow-up assessments
Since the project involves observing the children’s abilities, diagnosing conditions and setting goals, it becomes important to measure outcomes at regular intervals and communicate them in a clear, detailed manner. Project Noor has been able to streamline the collection, analysis and visualization of data.
It was quite easy to fill in the data. The goal planning sheet and assessment sheet were also quite good- you need to just click on the responses, which was very easy. If there is some area we have missed out, the form doesn’t get completed. That was quite a good aspect- there was no scope of missing out anything. All the relevant information needs to be put in the form. I really liked this aspect. Also, it is saved, so it is available for future retrieval. That was also a great aspect. It is much better than pen and paper, where we may miss out something and you have to write a lot. Here, everything is prewritten, so we need to click or maybe add 1-2 sentences, which is good
Dr. Nigamaja Hariharan, Physiotherapist
- Access to the latest data at regular intervals
Apart from being able to collect high-quality data systematically, the team has been able to access it in real-time on a regular basis to get an overview of the progress and perform analysis on the children’s health. Further, they have been able to observe outcomes and plan the intervention accordingly. The data collected by the Community Health Workers (CHW) and the medical professionals are available, as and when required, to monitor the program. Once the goals are set, there are follow-up sessions to track developments. The data from each survey can be filtered based on various parameters to gather specific insights.
Personally, it has been very easy to use the app. The biggest problem with using hard copies of the forms was that you could not carry it around always. In this case, the data is on my phone and it becomes very easy. Secondly, filling the fields is very easy in the form. We didn’t have to do anything extra- the form had all the details. So, it was very easy. Being able to view the data in one glance was also very convenient
Jai Prakash Kumar, Community Health Worker, ABS
- Rich visualizations to showcase impact
With interactive dashboards that track the number of submissions daily and aggregate different parts of the surveys, Project Noor believes that they will help the team eventually communicate the impact of the program to external stakeholders.
When you present things that are well-documented to a donor, it definitely carries a lot of weightage. I’m also going to reach out to people in the government working under the RBSK program to find out what they think about the model.
Dr. Shabnam Rangwala, CEO
The insights gathered from the consolidated data and visualizations will help present data, build a case for the value of the model and serve as a point of discussion with the government. This dialogue will be an important part of the process, given that the team is looking to scale the model.
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Ability to perform a longitudinal study The system of updating each child’s health information periodically through follow-up sessions has enabled Project Noor to track their progress over time. The assessment in the follow-up sessions is based on the goals for the children. The team will now be able to conduct a longitudinal study to assess outcomes at the individual level and present the evolution of status of a child over a period of time.
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Creating a difference under the RBSK scheme
With a model that aims to create accountability at the local level and can be replicated, Project Noor strives to increase the scale of work with children with developmental delay under the ‘Rashtriya Bal Swasthya Karyakram’ (RBSK) scheme by initiating dialogue with the Central government. Additionally, the use of technology has helped simplify the process of data documentation.
The best part is that we are preparing a cadre of local people. So, even when we move out, there will be a set of local people who understand how important it is- the child got better because we were doing evidence-based interventions. We were doing them again and again and they can hopefully carry it over to many other children who come to the centre
Dr. Shabnam Rangwala, CEO
DataOGram’s app has helped Project Noor streamline the process of data collection and management. Key insights from individual assessments and the goal planning exercise available in the dashboards and visualizations have helped the team plan the project and monitor progress in an organized manner.
Dr. Shabnam concludes by saying, “As the project has progressed, we have had so many updates and changes to make. As you keep on working, you realize the improvements you can make. I would have multiple discussions with the DataOGram team. The experience has been good. I always get immediate feedback from the team.”