Society of Parents of Children with Autistic Disorders (SOPAN)

Supported by: Wipro Cares

About the organization

SOPAN is a non-governmental organization (NGO) set up in 2002 to provide need-based services to children with autism and their families. SOPAN initially started with the mission of empowering persons with autism and their families but expanded its services to include persons and families with other developmental disabilities as there was a strong need for these services. SOPAN was set up in 2002. In the last 20 years, SOPAN has set up several projects and services and has become a reputed agency for service delivery in the disability sector.

Our mission statement is “Empowering persons with autism and developmental disabilities and their families.” We envision ‘To create an inclusive society where persons with autism and developmental disabilities live with dignity.” As an NGO, working for autism and developmental disabilities, SOPAN conducts the following activities.

• Provides services that include diagnosis, early intervention, school education, therapies and vocational training.
• Provides guidance, counseling, and training of parents and families.
• Promotes and supports the enhancement of inclusive education.
• Conducts human resource development programs in the area of autism and developmental disabilities.
• Conducts community awareness and advocacy programs.
• Networks with other similar organizations at local, state, and national levels.
• Liaises with local, state, and central governments for the formation/implementation of disability-specific policies and schemes.

Location

SOPAN offers services at Jogeshwari East. Enrolment of students with disabilities is from all over K Ward. Teachers and students of Suvidya Center come from all over Maharashtra. SOPAN liaises with Local level Committees and Registered organizations of the National Trust all over Maharashtra. Several meetings are also held in New Delhi by the National Trust which requires SOPAN representatives to attend these meetings.

Program updates

Samarpan Centre for Autism Spectrum Disorders: This was our first project. It began in 2003. As part of the same, we provide education, training, and therapeutic services to children and young adults with autism. Samarpan has provided services to more than 1,000 children and their families.

Natwar Nagar Mahanagarpalika Vishesh Shala (Divyang): In 2010, Mahanagarpalika Vishesh Shala (Divyangjan) emerged as SOPAN’s collaborative project with a Municipal Corporation of Greater Mumbai (MCGM) School run in Public Private Partnership. MCGM provides the space and SOPAN provides free education to the children and adolescents with disabilities from the nearby urban poor pockets of K Ward of Mumbai.

Spandan Community-based Early Intervention Program: A community survey revealed that there was a strong need to start an Early Intervention Program in a community site at Jogeshwari. To answer this need, the Spandan Early Intervention Program was started in 2011. It provides free Early intervention services to children aged below 8 years of age. Right now, the service is offered at a community site at Jogeshwari Vikroli Link Road. Many children have received early intervention and have moved on to mainstream schools. The children who still require specialized services after 8 years of age are absorbed into our other centers.

Sanket ICT Training Program: Sanket was started in 2015 to provide computer and iPad training to young adults with autism and disabilities. This program focuses on skill building and providing livelihood opportunities to our young adults enrolled in the program. Under Sanket, we have also started an 18-month course of AEMP (Ability Enhancement Multimedia Program). It’s a professional training program for people with special needs.

Suvidya Centre for Special Education: Suvidya also started in 2015. Suvidya is a college that is affiliated with the University of Mumbai and recognized under the Rehabilitation Council of India. Suvidya conducts the following courses: B. Ed. in Special Education (Autism) which is a 2-year course; Short term Course in autism (Started in 2007); Continuous Rehabilitation Education (CRE) courses run for in-service teachers; workshops and seminars.

Project SHANAY:  SOPAN was allotted land by the City and Industrial Development Corporation of Maharashtra (CIDCO) to build an Autism Resource Centre named Shanay, at New Panvel. The center was started in 2021. We have 3 units which are the School and Vocational Unit (SVT), Respite Care Unit (RCU), and Research and Resource Development (RRD).

Saksham Sheltered Employment: Saksham provides sheltered employment for persons with autism and developmental disabilities. It was set up on December 12, 2022. Job work is taken from the community, completed, and given back regularly.

Apart from the above projects, SOPAN conducts a lot of awareness and advocacy campaigns throughout the year to spread awareness about disability and autism. These programs have garnered support from the community.

SOPAN networks with other organizations and schools which provide similar services. SOPAN was the State Nodal Agency Centre (SNAC) of Maharashtra from 2011 to 2017 for 2 terms where SOPAN liaised with all the registered organizations of the National Trust in Maharashtra. SOPAN is now the Local Level Committee (LLC) of Mumbai Suburban appointed by the National Trust. As LLC, SOPAN is responsible for the legal guardianship cases that are presented to the Mumbai suburban committee and enrolment of the Niramaya Insurance Card given out by National Trust to persons with disabilities.

COVID-19 has taught us resilience and the thought that one can work under any circumstances. It has also shown us how strong our parents are and that we can tap into that resource whenever necessary. Several other teaching modalities and avenues have opened during COVID-19. Hence, we still hold webinars and use the online platform for staff meetings and parent meetings from time to time.

Our approach

SOPAN has a staff strength of 65 people (at both centers), which includes special educators, therapists, administrative staff, caregivers, and auxiliary staff. The teachers and therapists are qualified and hold diplomas/degrees in their respective fields and are registered with the Rehabilitation Council of India (RCI). Their experience and knowledge have contributed to the development seen in the children.

In the projects that work with children and young adults with disabilities, SOPAN provides its services through the multi-modal approach. There is a multi-disciplinary team that works with every child. Our protocol of intervention with our students with disabilities is as follows:

Assessment: Initially when the students come for assessment, it is done by a multi-disciplinary team that consists of:

• Psychologist to assess IQ assessment, the disability, and the level of the disability;
• Occupational therapist: to assess problems related to sensory and other physical issues;
• Physiotherapist to assess any disability that restricts the child’s movements or actions;
• Speech therapist to assess speech and language problems;
• Special educationist to assess the learning profile of the child.

An assessment report is drawn up which helps program planning.

Program Planning: An annual program is planned which has long-term annual goals and short-term goals which are reviewed every 3 months. The program covers all areas like Cognitive skills – academics/pre-academics, motor skills, social skills, behavior skills, language and communication, self-care skills, play skills, etc. The planning of goals is done in collaboration with the parents. An IFSP (Individual Family Service Plan) for early intervention children, an IEP (Individual Education Plan) for children between 6 years to 14 years, and an IVP (Individual Vocational Plan) for older students are planned for the year. Transition plans are planned for students who may move to sheltered workshops or open job placements.

Program Implementation: Implementation is done by a multi-disciplinary team who all work together to maximize the potential of each child. Several methods are used to teach the child holistically to ensure maximum learning. Parents are also trained so that they can carry out the program at home so that learning is continuous. Parent counseling and guidance are given to parents so that they can work on the issues they face and are motivated to accept and work with their child. Several annual events and celebrations are part of program implementation to make students understand the importance of festivals and to increase their self-esteem to perform on several platforms. These include Annual Day, Sports Day, interschool competitions, festival celebrations, and educational outings. Where possible all 4 centers celebrate the events and festivals together.

Allied Therapy: Students who require allied therapies are given the intervention as regularly as required by the therapists. The team works together so that certain therapies can be carried out in class and other environments by other teachers.

Evaluation: At the end of the year, an annual evaluation is done for each child and the report is presented to the parent. This evaluation is the base for next year’s assessment and program planning.

At Suvidya Centre, the B.Ed course follows the University rules of enrolment and study plan. The teacher trainees have 4 semesters, and their curriculum is as per the norms of the University and RCI. The teacher trainees are involved in most of the annual events and celebrations of the 4 centers. They also go to other schools for the practice of teaching and observation.

The CRE programs are held 3 times a year with approval from RCI and this program is open to in-service teachers from mainstream and special schools. These programs also award points to the teachers which are required for their RCI registration.

The short-term course and training programs are well attended by professionals from the sector.

Plan of action

SOPAN’s plans for the next one to three years are as follows:

• Expand and set up at least 2 more satellite centers;
• Expand sheltered workshops and early intervention centers;
• Focus on the publication of research papers and resource materials for

knowledge sharing;

• Try and enrol more students for NIOS till the 12th standard;
• Increase the number of professional training programs.