Visit to Spastics Society of Karnataka Outreach Centers

August 4, 2004

I visited the Spastic society of Karnataka outreach centers on. I had called up Mr. Rabindran Isaac a few days prior to that and arranged to meet up at the SSK’s main office and center in Indira Nagar. This was my second visit to SSK; the first one was confined to the main office only.

About SSK: Rabindran gave me an overview of SSK. The society started initially with a branch in Bombay, and subsequently, several centers were formed in other parts of the country (like Bangalore, Delhi etc). Down the line, they have moved to a model where they function almost totally autonomously.

They get a big chunk of their funding from the govt (some of these are reducing grant model, where the grant is for a longer period like 10 years, but each year, the amount of contribution from the govt comes down by a fixed percent like 10%). These sources are also apparently somewhat unreliable. It is ironic that on the one hand, govt complains about unavailability of funds, and on the other a good amount of the funding allocated with several govt agencies for disbursal lapses because of non-use.

They have started a program at Vani Vilas hospital which is working out fairly well. The therapists from SSK visit the hospital once or twice a week and spend the day helping in assessing of patients who come over, in the same room as where the regular doctors also sit. Because people visit the hospital in normal course, bringing children for followup visits. At one point of time, people trained in special education had reasonable opportunities (several made it to the US as well), but over the years it has apparently come down. Several of the people whom SSK has employed in their programs in the past are now looking for jobs at the conclusion of those programs. Jawahar mentioned that they like to take up a program only if they can be fairly sure of their involvement with it over a longer term. SSK also provides periodic training programs for other organizations in Bangalore working in this area.

Mr. Chand Pasha is the lead field coordinator and he accompanied us on the visit. He visits the centers and writes out a schedule to be followed for the different children over the next couple of weeks (on different aspects such as fine and gross motor skills, speech etc). They work towards some short term goals and long term goals. A log is maintained for each child on what they do, when etc. Therapists from SSK also visit the centers once every week. A specialist doctor like a psychologist visits the centers every few weeks, and when new children are brought to the centers, they help in initial evaluations and then refer them to either other hospitals or the SSA main center. The day to day activities and working with the children are handled by community based workers.

There are 3 different set of programs: the day care center which is attended by children who come regularly, a home management program where children come once or so a week (some of them go to a regular school) and the third is home training program where the children do not come to the centers much, but their parents are given some training to work with such children at the homes itself.

The field coordinator and CBRs also help the children to get bus passes and the govt’s monthly scholarship program for special children (where they give a small stipend of about Rs. 100 per special child). To avail of these benefits they need to get some paper work completed which the instructor helps out with. The govt has also introduced a disability card (which is certified by a doctor, which lists the disability and the severity etc). Several doctors apparently issue these cards by taking a bribe. But SSK gets these cards for the children through their referral doctors, and they don’t have to go through this bribe-giving route.

Kempapura Agrahara Center:

We first visited the Kempapura Agrahara center, which is the oldest one among the outreach centers of SSK, having been stared close to a decade back. It is located near the north-west periphery of Bangalore. The residents of the slum are apparently fairly well-organized vis-à-vis politicians who come asking for votes, and make an effective case for getting different facilities they need from the govt. The lady who is the main force at this center is an effective community organizer and has recently got the Rotary Club’s award for people who have made a difference in the community. One of her daughters is also a spastic and attends the same center.

The center had been operating in a different place previously (which had a room and some toilets I think). The overhead drainage pipe had developed cracks and the water spills over into passageway below. Therefore, they moved to a different place in the same locality (the community provides for the rent of this place). This new place has 2 rooms; one small one and the other only slightly bigger. About 15 young children were present in the bigger room (some along with their mothers), and 6 older children were practicing

The older children make several items in the vocational training center. On the day I visited, they were making small flags, essentially taping the flag to plastic straws (the Indian Independence day was coming up). A ladies organization has apparently come forward to market these items for them. The main center of SSK gets a good stream of orders from companies for stationery, greeting cards etc. They are trying to promote something similar at the outreach centers as well, but there is a long way to go before they get there.

On our way back, we stopped at a local school. It is a govt-aided high school which is run pretty well. Many of the slum children attend this school. A few of the special children from the SSK’s centers also attend this school. The intent is to integrate them with ‘ordinary’ children. Apparently they get good cooperation from the HM and teachers in this process.

Kadirappa Slum

This is located about 5Kms from the SSK main center, around the Cox Town area.

At this center, the local corporator had gotten a small room which had an attached toilet for use by the centers. 6 children were there that day. The teacher seemed to be very good and creative at art work, and this was reflected in the work of the children. One of the children was a deaf and mute child and she showed the drawings she made which were quite pretty.

Krishnayananpalya Slum

This is located 3-4 kms from the main SSK center.

These center’s classes were being held in the local govt school. The school has classrooms on the upstairs and the hall on the ground floor was given to these children to use. I felt this was quite spacious and hence provided a better atmosphere for the children than the other centers. This is a school where some integration of special children with the regular children is also being tried out. About 10 children were present in the class that day; the physical age spectrum was pretty broad with some fairly young to older.

The local community has got a small plot on which they want to construct a new center. But apparently, the plot size is not very large so it may end up being a much more constrained place than the school hall they are currently using, which is at least somewhat roomy. They will take a decision on this in the coming days.

On our way back, we went to the home of one special child who is in the Home Management program. Her mother had been taking her to the main center at IndiraNagar where they perceive that their child will get ‘better’ facilities. This has led to an argument with the center in-charge. Because of the some-what closer proximity of these outreach centers to the main center, such a situations come up occasionally; SSK tries to discourage them from having to rely on the main center.

We returned to the SSK main center and before leaving I met briefly with the head of SSK. She narrated an incident where employees from a large corporate visited them, and at the end said ‘you are doing a good job, but still your products are basically liabilities’. She had good reason to be indignant with such insensitive attitudes which treats children as commodities.

Conclusion:

We should request SSK to organize more training camps for other groups (particularly from rural areas) so they can get some training.

The Kempapura agrahara center appeared to be really cramped for space. They should really look at augmenting the center’s infrastructure or move to a some what bigger place to provide a better environment for the children.

The Kempapura Agrahara program, having been in place for more than a decade now, has perhaps more parental involvement. I could not assess this for the other centers.

Attendance at the centers was lesser on the day we visited compared to the total children enrolled. I inquired about this and was told (with attendance registers) that normally the attendance is fairly satisfactory.

SSK does a professional job at what they are doing. The people involved have all been well trained.