Janarth

Annual Report

On

CBR of the Disabled Persons

Year April 2004-05

  INDEX

  1. Household surveys and holding identification and diagnostic camps

  2. Creating Awareness about prevention and early identification

  3. Reaching Therapy services and professional help to the disabled persons

  4. Strengthening groups of persons with disability

  5. Enhancing skill levels of CBRWs

  6. Networking and Co-ordinating with other organizations

  7. Searching avenues for vocational rehabilitation

  8. Training of CBRWs

  9. Advocacy and using group pressure for public good

  10. The future directions

       Case Studies

       Budget Utilization table 2004-2005

 The year gone by was the third year of your valuable support to the project. I thank the Trust for continuing to support the CBR project beyond the initial three years till the balance is utilized. The preceding reports had revealed that while we were satisfactory in reaching the programme objectives, the budget utilization was low as at times the village took up the expenses of programmes or we were able to raise local donations. This was eminently possible because, as said earlier we had your financial backing to meet the programme expenses in case the local community was not forthcoming.

I now turn to reporting on progress in the year in question - 2004 -2005

I will again report against the activities as laid down in the proposal

1.                  Household surveys and holding identification and diagnostic camps.

This was completed in the last year and therefore there is nothing to report afresh.

In the surveys that we did we were supported by the Aanganwadi teachers as they are in contact with every under 5 child in the village. The school teachers were also helpful as they encounter the difficulty faced by a child in their classroom teaching. Also at the start of the academic year they have to survey the village and make a list of all educable children. They may not be able to identify the disability but they know something is different. The third group that helped were the disabled persons themselves as they are sensitive to other disabled. Many of the new identifications were with the help of other disabled persons.

2.                  Creating Awareness about prevention and early identification

We printed posters on what is disability and how to identify it. The costs were met by the Nagar Parishad Vaijapur. We put these up in schools because the message in the posters was directed at school children.

We also printed around 6 pamphlets regarding government schemes which were distributed in villages. This was because many eligible disabled do not get the benefit as they do not know about schemes.

The women's group forums in the villages was used to spread awareness about disability. The women bring many disabled to us during the monthly women's meetings.

With information and awareness levels in our villages increasing, the 'disability' message has spread through word of mouth to other talukas too. We get referrals and questions from outside our project areas and Aurangabad too. We get phone calls regarding different problems faced by a disabled person ? re admissions to professional courses, getting a writer for the blind, employment, getting disability aids, other schemes etc. Janarth is getting known as an NGO which helps in any question related to disability.

A rehabilitated disabled person is most effective in spreading awareness and confidence in the villages. This method has also helped us in our objective.  Participating in the Pulse polio drive is a matter of routine for our workers now.

One of the tasks of the CBRWs is to visit families where a baby is born and make sure that the baby is ?normal?. In case of doubt they are to follow it up with the families and encourage them to go for a diagnosis. As a result of this, although not many new babies were identified we were able to identify cases that had slipped from our earlier surveys and camps. In the year, 64 new cases were identified of which 48 were children below 11 years of age. Of the 64, 27 were females and 37 males. The disability break up is 18 speech / hearing impaired, 16 with orthopaedic disabilities, 12 mentally challenged, 11 visually impaired and 7 with cerebral palsy. This brings the total identified disabled in 100 villages to 1225.

3.                  Reaching Therapy services and professional help to the disabled persons

a) Aids and appliances

Two children were given walkers worth Rs10000 this year. One visually impaired child was given a tape recorder for studies.

To date 73 aids and appliances have been given. 28 continue to use them today. Three have stopped using them though they need to. The rest do not need to use now.

There are 20 disabled persons needing aids. Of these 14 will be receiving them shortly through the rotary club.

b) Therapies

We are giving therapies and ADLs to 137 disabled persons. Of these 112 are below the age of 15 years of age. The break up

 ADLs                       50

 Physiotherapy         52

Speech therapy       28

Mobility training         2

Pre-vocational         16

Vocational trng          5

Some disabled persons need more than 1 therapy e.g. physio and speech therapy to a CP child.

Therapists have reviewed therapy plans of 42 PWDs this year.          

      4.        Strengthening groups of persons with disability

As said last year groups of disabled persons have not taken off as we had envisaged. We had reduced our focus on it last year as the progress was uninspiring.  Although groups have not come up to our expectations the same groups do take on activities in their own villages.

In the Abilympics 2004, 30 disabled persons from 11 villages took part. This was at the initiative of the groups.

Groups help the disabled in

getting admissions in village schools,

preparing a child and his parents to get their child operated,

preparing a parent and the disabled for pre vocational activities,

identifying new cases and encouraging parents to seek professional help,

giving information on government schemes.

The village groups also take part in school programmes

Three cluster sports were held in December and January. The first was in Dahegaon where 6 villages participated. 12 disabled took part along with the normal school of Dahegaon. The second was in Lasur where 63 disabled persons from 23 villages participated. The third was in Eklehara where 40 PWDs from 12 villages took part. All these cluster sports were held in the government school of the village so that the normal children could experience the event. Thus each sports day was attended by the school children and teachers. The students also took part in the inauguration programme and then sat through to cheer the participants.  In each of these normal children were also allowed to participate equally. Only their numbers were restricted. 

We along with Marg organized the Abilympics - 2004. There were over 200 participants. The entire expenses were raised locally, either through sponsorship of an event, giving services free or giving cash donations.

In Feb 2005 for the first time in Aurangabad we helped organize an integrated cultural competition of all disabled and also 2 normal schools who participated equally. A new concept was that each item - group song or dance - had to have at least 1 normal child. The programme went off very well with 22 Institutions and schools participating. 5 schools from our project area participated. Judges were unrelated to disability but known names in their fields.

In April 2004 a 5 day sports workshop for teachers of the disabled was held through Marg. 27 teachers participated from all schools in Aurangabad. It was well received and it was suggested that we hold such a workshop every year on different subjects.

5.      Enhancing skill levels of CBRWs

In the year CBRWs were divided into 3 groups. Each group comes to Office on separate Wednesdays so that the professional gets more time with each of the workers and thus help in enhancing his skill level.

The CBRWs accompany each of their case to the professional so that they are able to refresh their learning when the therapist examines the child and shows exercises.

All the workers were given a week's placement in the physiotherapy unit of Dhoot hospital.

A monthly meeting of all workers is held when a professional addresses them.

A new batch of CBR workers training was begun in December. There are 10 trainees. The training will end in June.

     6.    Networking and Co-ordinating with other organizations

- Janarth is a member of Marg a group of organizations in Aurangabad involved with work among the disabled. Through this group Janarth organizes a number of programmes in Aurangabad.

- Lion?s Club, Chikalthana approached Janarth to extend help to the disabled. They gave 2 walkers, 1 tailoring machine, and the fees for MS CIT of 1 student.

- Rotary Club approached us as they wanted to help in operations. 5 patients have been operated upon for their disability, while another 6 will be operated in May.

The club will also be giving aids to 4 disabled children

- Another Lion's Club gave a tape recorder to a blind child.

- In Abilympics, MIT College, a photo studio, a furniture shop, a marriage hall owner where the event was held and many others helped to organize.

- We are co-ordinating with the government at different levels to run the therapy  centers. Details given later.

7.             Searching avenues for vocational rehabilitation

    Villagers help in planning / suggesting vocational options. Some have even taken them in their trades and teach them on the job.

This year

17 disabled were given small trade training with the help of Jan Shikshan Sanstha in June '04.

2 physically disabled boys were given admissions in a Sheltered workshop in Aurangabad.

      In the village 1 boy was given help to buy goats, 1 girl a push cart, 1 an over lock tailoring machine, 2 men tailoring machines, 1 a small capital to start a mess and a to start a shop.

In all through our efforts 92 disabled have been helped with vocational rehabilitation in the last 3 years.

        8.                   Training of CBRWs

The training of CBRWs began in December 2004. 10 students have enrolled for the course. 5 modules have been completed. 2 more remain before completion. They will be visiting Institutions for the disabled outside Aurangabad after the examinations. The entire faculty is very happy with this batch as an intelligent and interested batch. As stated elsewhere we are writing to the Health University and Marathawada University to start a similar course so that these students get recognized certificates. In the meantime, considering Janarth's future course of action many of these trainees will be required by us in our work with the disabled. 

         9.                   Advocacy and using group pressure for public good

We have been doing the above on a number of issues.

a)    We have written to the Corporation regarding making public buildings barrier free. The Drama theatre owned by the corporation has been made disabled free this year. 

b)    We have written to the State Commissioner disabilities regarding reviewing and scrapping the shameful practice of affixing the photo of the disabled on Disability Certificates with the disability showing (e.g. a polio affected woman in a sari has to photograph herself with her polio leg showing)

c)    We have met the Collector and discussed the issue of admissions of educable disabled in normal schools

d)     All groups from our villages have collectively written to the CEO, Zilla Parishad asking for the appointment of special teachers in schools to teach special children.

e)    We have written to all concerned about stopping the harassment of parents of disabled children who come to the Government Hospital for disability certificates.

f)       To make therapy services accessible to the rural and urban poor therapy centers have to become a part of the government health delivery system. We have written to Secretary health and all concerned about the issue. To explain our point and to prove that it is a possibility we have started 6 therapy centers within government health set ups as demonstrations. There is one center each in a Primary Health Center, a rural hospital, a Nagar Parishad hospital, a Corporation Hospital, a Gram Panchayat building, and a private hospital.

g)      CBR training is another crucial link in providing services to the disabled poor. We have approached the Health University, Marathawada University to start courses for this.

       10.                The future directions

The future course of this project has emerged from our experiences of the last three years. We will be concentrating our efforts in the following areas:

Working through therapy centers as a viable model of reaching therapy to the poor urban and rural disabled persons.

Strengthening the groups of disabled persons in villages / communities to help each other in disability related problems.

Working for individual vocational rehabilitation of the disabled. This year's experience has been positive. Although uphill, we are finding that vocational rehabilitation in villages is viable

Focusing on larger issues related to disability that require public awareness and influencing related government departments.

Co-ordinating our disability effort with other like minded persons and organizations in Aurangabad.

We will be utilizing the balance of funds in these areas.

In conclusion we thank you for your support and your trust in us. We are also thankful for assuring us of your continued support beyond April 2005 as there is unutilized balance from the sanctioned budget.  

     Report prepared by:

     Usha Mahajan                                        Anita Pillay                                       Rajesh Mishra

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Case Studies

I

Name: Pritam Indrabhan Jadhav  

Age: 11 years            

Disability: Orthopaedic Impairment 

Village: Mehboobkheda, Gangapur

Pritam was born with deformed (inward bending) feet. Before he came in our contact he had been operated upon for his disability but unsuccessfully. In March 2003 after we came in their contact we again showed him to a doctor who suggested corrective surgery. A second opinion also suggested the same. Then began our work with the family convincing them of undergoing the surgery again. This was a little difficult as the first had been a failure. But repeated meetings yielded results, aided also by the rotary club who had planned to do free operations in one of the elite hospitals in Aurangabad - Dhoot Hospital.

Pritam was operated upon in January 2005 ? 2 years after we came in his contact. The operation has been a success. Pritam will soon be able to walk with corrective boots.

Usually this is a simple operation and the person fully recovers from his disability if done while the child is small. But the common fear of operations and non-availability of sensible and informed advice lead to many children being permanently disabled. A loss of human potential!

 II  

Name: Vijay Ramchandra Koshti 

 Age:  27 years                       

Disability: Mentally Challenged           

 Village: Kasoda, Gangapur

Vijay is the only child of a village teacher. We came in their contact in 2000. Being educated the family helped greatly in the ADL and our efforts at making him independent. As Vijay was already an adult we began planning for his vocational rehabilitation. The father suggested opening a shop in his house itself. We began training Vijay on how to manage the shop. In 2004 his father opened a shop for his son. He will of course always need help. The important part is that the shop now belongs to Vijay. So now even when someone else looks after the shop Vijay will be taken care of from the proceeds. The parent's anxiety about the future thus lessened. 

A later development: Vijay's parents found a bride for him and got him married! The girl now looks after Vijay and runs the shop.

 
III

Name: Deepak Dattu Shinde          

Age: 7 years            

Disability:  CP + MR

Village: Shahapur

Deepak came in our contact in 2000. At that time Deepak could not even hold his head straight. Professional examination revealed that besides being a CP child Deepak was also mildly mentally challenged. Under professional advise and CBRWs support Deepak showed quick progress. The positive attitude of the parents and their willingness to give time to Deepak and carry out the therapies helped a great deal. Today Deepak is able to sit, walk, and tell his needs. At present he is being taught how to have a bath and wear his clothes. Deepak's parents get him to a professional in Aurangabad every 3 months. This is also a reason for his progress.

On the side: Deepak's mother was diagnosed with a weak heart and needed a valve change. With our help (mainly good offices) she was operated upon in Dhoot hospital.

 
IV

 Name: Nayan Mukunda Gound 

Age:  6 years            

Disability:  CP + MR

Village: Naigaon

Nayan's father works in a company. Mother is house bound because of Nayan. After we met Nayan we took them to the physiotherapist. This helped Nayan in gaining muscular strength and co-ordination. But as she was not toilet trained the school would not accept her. Our CBRW then helped the parents to do toilet training. She was then admitted to school.

Now began the next group of problems. The teacher would make her sit in a corner and would not pay any attention to her, as she was an MR child. Our facilitators and CBRWs then kept in constant touch with the teacher, explaining what was expected of her and how she could help in the child's acceptance by her peers. This we have now achieved. Nayan now sits in the first row and so is included in the classroom activities.    

We are now dealing with the third level of problem - teachers not being equipped to teach special children, nor their being any effort by the Education department to meet this challenge.

In the last year we spoke not just to Nayan's parents but also to parents of other children facing a similar situation. It was decided to make a common appeal to the government to address this problem as it was resulting in the educational wastage of these children. We collected these letters from all the villages and with a covering letter this was given to the Government Education Officer at the District and Block level and a copy to the CEO Aurangabad.

This year the parents will go as a group and meet the CEO asking for immediate action on their memorandum.       

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