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Interview with Ms LV Jayashree, Director, SSTN

Interview with Ms LV Jayashree, Director, SSTN

1. Please share with us some of the good work SPASTN has been doing.

Spastic Society started in 1981, International Year for the Disabled.  SPASTN started in an Aynavaram from a room allotted by C.P. Ramaswamy Iyer Foundation.  SPASTN is now headquarters in Taramani in a 5 acres area, serving more than 1300 children across3 center-based and community-based programs.  We primarily serve children with autism, Cerebral Palsy, multiple disabilities, and mental retardation.  We are also State Nodal Agency Centre in Tamilnadu for the National Trust.

Scope of our work is –

  1. Early identification - Physio-therapist SPASTN goes to a public hospital in Chennai and primary health centers to identify children at risk or high risk.  We are doing this for the last more than 20 years and have identified more than 1 Lakh children at risk or high risk.
  1. Early Intervention - Next step to identification is intervention.  Prognosis is good if we start working on the child as early once we know the child has a developmental delay or clear evidence of disability. 
  1. Build Capacity of other NGOs -  We are operational in the disability management field for more than 33 years old and now is the time for us to play the role of mother NGO.  A lot of learning happens as we work with our children and our clients.  As we do that, we build our capacity, it becomes natural, and we can build capacities of other NGOs that require support in the areas of NueroDevelopment Therapy and other areas where we have the capability.  We also build the capacities of other state government departments such as Ministries of health, Ministry of social welfare, Ministry of education, Ministry of rural development, as these are the state government departments that work with the marginalized community.  We train Anganwadi/Balwadi/ICDS workers so that they can help support marginal communities.

2. Please share with us what keeps you personally excited on this journey. Please share your personal story and some anecdotes that you fondly recall.

In disability space, each child is different.  We have more unique requirements than the resources can directly meet.  Implementation of plans could be challenging as well. 

There is a continuum of needs and programs are created to meet the lowest common denominator of needs.  All beneficiaries may not be fully satisfied as their needs may be over and above what is offered through the program. 

What works in one center may not work in another center (level of expert availability and level of training may be different, apart from the children need being unique).

While we have specific programs, knowing our limited scale of operations, there can’t be broad-brushing.  We have responsibilities to improve our services and coverage and the same happens in a phased manner.

We have team members that work with State departments and partner with them on projects that they need SPASTNs domain knowledge.

Over time, we have built our own capacity and helping partner organizations built their capacity. 

We have leveraged partner organizations such as Samarthyam for accessible universal designs, who carried out two levels of training for our staff in accessibility audits and solutions.  Similarly, we have offered our support to Samarthyam when they needed to carry out training in Chennai, we requested all government department officials to attend and benefit from the same.

A few years back we supported Sarva Shiksha Abhiyan (SSA) – we are involved in training programs for SSA teachers, similarly, a team of Orthotics and therapists from Bihar was trained by our pool of Physiotherapists in TN.  Now there is a request to send a therapist from our center for Spastic society of Trichy.  We provide need-based support.

NGOs have collaborative working relationships.  There is no reporting or pecking order amongst us.  In areas where we have the expertise and are first-movers as in case of Interface on Disability – we train trainer, initially monitor program implementations, and over the time the NGOs develop their own capacity and become self-sufficient.

It is exciting to be in this space.  Initially, we had our journey to build capacity and capability and we have come a long way in the last 30plus years.  We developed a model template to have a nodal NGO for every city in TN, provided interface, training and helped build their capacity through pooling Physiotherapists across NGOs.  We need to be cost-effective and reach-effective.  That’s the challenge in NGOs that keeps one excited!

3. Would you like to share key developments in corporate, government, regulation and other ecosystems that are promoting accessibility and inclusion?

We believe strongly in advocacy.  We regularly work with government ministries (Health, Social Welfare, Rural, etc. to promote cause relating to disability.  We regularly apprise ministries of service lacuna faced, and raise the flag as and when needed.  Government ministries are always open to listening to our viewpoint and also the viewpoint of NGO’s like us.  We do this to push all required levers to make sure we meet the needs to PwDs with “Many Hands” approach.

4. How has technology helped advance the cause of accessibility and inclusion?

Technology is an enabler to help the disabled.  A lot can be done in this space.  There are devices available in the USA, but affordability is a concern.  We have partnered with Mindtree Foundation who closely works with physiotherapists from SPASTN to gather the needs of our children.  Our team has shared user stories for some of the prototypes.  Mindtree comes with first level prototype in working with design agencies and their in-house research.

Mindtree Foundation agreed on a few doable ideas and partnered with IIT Chennai to develop solutions that can benefit not only SPASTN but can benefit special children in general.  So far Mindtree foundation has funded the development of 3-4 products. One such idea we are working on is XBOX technology – body sensory operated gaming. Here we are exploring how a person with cerebral palsy can dynamically engage in movements as he interacts through the game. 

While technology plays a key role, we know our children best and technologists know the technology best.  It is important to arrive at a common meeting point to evolve functional solutions.

Assistive technologies could be low-tech or high tech.  We need technologies for mobility, posture corrections, and functional use of hands for educational learning outcomes. There are some simple devices that do not involve heavy cost such as Peloids customized by our physiotherapists using tapes etc. 

5. What role do you see Getmeenabled.com playing in this ecosystem?

Getmeenabled.com is an e-commerce portal for assistive devices.  It is quite an exciting idea to have a portal dedicated to the needs of the disabled and elderly.  Our corporate partners such as Mindtree foundation and their CSR wing have been using the portal for their “buy & donate” program.  The portal makes available the product directly to the beneficiary in short lead time.  While there could be many imported products available, affordability is a concern and it is good to see Getmeenabled.com’s focus around Indian products and indigenization. 

The portal combines standard products and customization based on consultation with medical practitioners.  Some of the products require consultation from physiotherapists.  Today technology has come a long way.  One does not have to make multiple visits to the health centers.  Can use standard instructions, take a measurement, and exchange the measurements for customization using videos on U-Tube. 

As a young start-up becoming popular in disability products space, my advice to Getmeenabled.com would be to work with the existing eco-system of NGOs to make themselves a valuable partner for the corporates and NGOs focusing on addressing cause of disability – to enable young and adult alike to participate in as aspects of community life and also be able meet the fullest potential of every person.

Jayashree can be reached at thespasticssocietyoftamilnadu@gmail.com

 

 

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