<p>Before we get into the details of the project, it is important to develop some idea of the community and the geographical settlement we wish to cater to and its living and economic conditions at present, in general as well as disability specific. </p><p>Juhapura is an area which was earlier a village on the outskirts of Ahmedabad sandwiched between Vejalpur and Makarba villages. With time, it was incorporated in the city of Ahmedabad as a satellite area and had a Panchayat as the governing body. It has both, the rich as well as poorest of the poor living within its boundaries.</p><p>In 1973, following the floods in the river Sabarmati, a rehabilitation area named Sankalit Nagar was established in Juhapura to provide shelter to the flood victims. Sankalit Nagar was spread between various Panchayats and some Municipal Corporation areas. In 2006, it was incorporated in the Ahmedabad Municipal Corporation.</p><p>Following the riots in 2002, there was a large scale migration of Muslims from other areas of the city due to safety reasons and concentration of the community in Juhapura, especially Sankalit Nagar. Today, this locality is the largest Muslim Ghetto in India where living conditions are very poor and the population completely marginalized because of the communal tensions existing in the present political climate.</p><p>The area has poor infrastructure, leading to water retention every monsoon, followed by outbreaks of communicable diseases, etc. Some other key services in the areas of health, education and banking are also insufficient. To give an example, in a population of 300,000 residents of Juhapura, there are only 3-4 maternity homes. Most deliveries are conducted by midwives as they are cheaper. </p><p>With respect to disability related services, in the entire area, there isn’t a single centre, rehabilitation organization or special school to look after the needs of children with disabilities. With an estimated 10% of the population having some or the other disabilities, we are looking at a population of nearly 4,500 children in the age group of 3- 12 years who have NO access to services (12- 15% of the total population is children in this age group as per the census reports). Combined with higher birth rate in Muslim community, frequent consanguineous marriages, higher unemployment rate, poverty, illiteracy, poor nutrition and poor infrastructure, disability in these children create the biggest barrier to their participation in the society.</p><p>Our project last year in partnership with a local organization named ‘Samerth’ is the first initiative in the history of Juhapura as far as disability related services are concerned. Following this project, there is some level of interest in the government departments to address their needs. Last quarter, they conducted screening camps to issue disability certificates to individuals in the area.</p><p>Setu initiated this project with Samerth initially to see if there was a willingness on the part of the parent community to find some help for the children. Keeping the communal scenario in Ahmedabad in mind as well as our own inexperience of working with lower socioeconomic groups and in community based work, we decided to start the work on a small scale and at our centre in order to ensure that there were no major financial liabilities, either on our part or on the part of a donor in case we had to move out of the community or stop the activity due to some unforeseen problems. Moreover, as we were not sure how parental reactions and participation will be, we did not want to invest too much from the beginning to create a situation from which removing our presence will be very difficult. </p><p>As there was no effort being made for any one with disabilities in Juhapura and keeping in mind our expertise with young children, we began with conducting a few training sessions for the team at Samerth where we taught them how to identify simple signs of disabilities and how to counsel parents. This was followed by a small assessment camp in Samerth premises where we were able to identify the first 20 children who eventually were included in the programme at Setu. Seeing parental interest and commitment, we sought financial assistance from various partners in order to meet the costs. Unfortunately, out of the first 13 contacted, no one was willing to support initiatives either because they were for Muslims or because they were started by an organization of Hindus. Finally, one Hindu family trust in Ahmedabad agreed to help us set up the programme by sponsoring the cost of 10 children for a year. </p><p>That is how we began working with the children in the month of November 2006. At the time, we had provisions for 10 children. Within one month, this number swelled to 21. As of now, we have a total of 32 children from Juhapura on record out of which about 14-15 attend the services regularly. At the time of submitting the proposal, we did not keep in mind the cost of transport as it happened very quickly. Therefore, at present, parents are paying Rs. 100 towards their transport costs with Samerth matching the remaining amount. This small fee is preventing at least 10 more families that we know of from sending their children as their economic condition is quite bad with food being available only once a day. We can not subsidize it anymore as my team is anyways gracious enough to not ask for a hike in pay to work with more number of children then included in the proposal. </p><p>With this information in mind, please let me address each of the questions you have asked. </p><p>Question 32 and 33: 1. Questions regarding the budget: a. Is the salary mentioned in the table (question 33) for new hires or are they already working for Setu. If they are already working with Setu, then how they were preciously funded and why is Asha’s funding necessary? If they are new, then what is their purpose in the project? </p><p>As explained in the line items, where a certain % of the salary is being requested, it is for existing team members who, apart from their other responsibilities, are also looking after the children from Juhapura. Where we have requested the entire salary from ASHA, it is for new hires. Those who are already working with Setu have their salaries met by three programmes- early intervention unit, remedial education unit and Juhapura initiative. At present, part of their salary is coming from the existing financial partner. As I said earlier, this salary is paid as a certain % of their total salary to cater to 10 children from Juhapura. Instead, at present, they are looking after 32 children out of which on an average, 14-15 come daily (This is why I mentioned 14 out of 39 children as getting free service as we are not catering to all 32 on regular basis).</p><p>We are planning to increase this number to reach 45 and therefore, have to compensate the existing team accordingly. This is the reason why, the existing team of therapists has been included in the budget.</p><p>As for the new hires, the need for educators is felt because Setu is essentially a therapeutic centre and hence, we do not have educators but therapists. The therapists are involved in service provision in terms of assessing children, planning management strategies and providing therapies. We have hired one educator to help the therapist but with 45 children attending the centre without adequate number of adult assistants on a daily basis, we will need more educators who can follow therapists’ plans and carry out the intervention work.</p><p>The budget also asks for funding for 30 children. Does Setu plan on admitting 30 new students or is the budget for existing students. If it is for existing students, then do they intend to waive the fees for the children who are already paying fees?</p><p>We are planning to bring the total number of children from Juhapura to 45. Therefore, the budget presented to ASHA is for 30 new children from this group. We are confident that with financial provision for 30 more children, we will actually get a number closer to 40- 45 which, based on our last year’s experience, we will be able to accommodate easily.</p><p>We do not want to make the services free for other children who come from higher income groups as they can afford to pay for their children and should pay.</p><p>It is written that 25 out of 39 children pay; how is it decided which families would pay and how much?</p><p>As far as fee structure goes, all children from Juhapura are selected by Samerth and are from very poor families. Other parents who pay are judged on economic criteria like the type of house they have, the type of vehicle they own, their occupation and the degree of responsibilities they have in terms of having other children or parents to look after. We have staggered fee structure with parents paying anything from Rs. 100/- to Rs. 1600/- per month towards services. All of them get the same services irrespective of what they pay. b. Is it possible to get a breakdown of the expenses, ie. Transportation, communication, etc.</p><p>At present, children from Juhapura come to the centre, which is nearly 12 KMs. Away from their homes by a van. This van costs Rs. 5000/- a month to collect children from specific pick up points and bring them to the centre. The van waits for them for 2 hours and then takes them back. At present, parents pay anything between Rs. 50 to Rs. 100 per month to partially cover the cost of transportation with the remaining amount being met by the partner organization. This is the cost we would like to cover as it will make it easier for many more parents from the locality to send their children. </p><p>We have 2 phone lines, one by reliance and the other by BSNL. The reliance phone charges are Rs. 561/- on an average per month and the BSNL charges are about Rs. 2500/- per month including the Internet charges. The total amount spent towards communication is roughly divided between various projects as follows:</p><p>Early intervention unit: 10% Remedial Education Unit: 10% Administrative Office: 30% Fund Raising Efforts: 20% Training Programmes: 10% Outreach: 10% Juhapura initiative: 10%</p><p>Therefore, we assign Rs. 351/- per month towards communication expenses to Juhapura project bringing the yearly total to Rs. 4212/-. Based on this calculation and situations where this expense may be less than the averaged out amount, we have asked for Rs. 3000/- to cover the expenses we believe as actual. c. Setu seems to have funding for the year 2006-2007. What is happening to this funding after the 2006-2007 year? Will it be available after this year? </p><p>As our discussion with the present partner was to help us with setting up expenses for one year which completes in October 2007, we are not yet in discussion with them to extend assistance for the next year. Having said this, I am also confident that they will be willing to help us as we have been very sincere in reporting to them on time and they are fully aware where each rupee of their grant is going. </p><p>Personally, I wish that we do not have to ask them for help next year for this activity. In Ahmedabad, we have a very few number of partners who will help because there is a need. Everyone here has a communal agenda and we do not want to utilize one partner who has shown enough courage to start working with Muslim children for the same activity when we can use their help in initiating other programmes like training mothers or conducting newborn screening, etc. Moreover, dependence on one financial partner for the activity may be ultimately undesirable as their willingness to help can change for a variety of reasons, least of these being their poor commitment to helping children. </p><p>For what year is the funding requested from Asha? </p><p>We are still waiting for our FCRA permission, the inspection for which was conducted last month. With that in mind, let me also explain that this request to ASHA is part of a larger plan of the organization. (I have attached a brief concept note as Annex 2 at the end of this document). Keeping the timeline of the entire project in the concept note, year 2008 is what we are looking at as far as receiving assistance from ASHA is concerned. d. Is it possible to get a breakdown of their previous funding/expenses?</p><p>Attached as Annex 2</p><p>2. Questions regarding the project basics: a. For which center is the funding being requested: Juhapura or Thaltej (question 7 seems to confuse us regarding this)? </p><p>We want ASHA to help us run the present centre, keeping in mind that there will come a time when we will have to have some schools/ centres in Juhapura to become viable and accessible. This is what I meant when I wrote that I want the present proposal to consider our request to help the existing centre and in future, would like ASHA to consider our request to set up more schools within reach for these children. </p><p> b. Why is it necessary to open another center, i.e. what type of a community is it catering, how far is it from Juhapura, etc.?</p><p>We do not want to open another school at present. This request was for future when we want to open a school in Juhapura area. </p><p> c. it also says that there are other schools in the Juhapura area-what type of schools are in the area, what type of a relationship does Setu have with these schools?</p><p>Juhapura has a total of 22 schools catering to the primary (grades 1 to 7) and secondary (grades 6 to 10) level children. All of these schools are mainstream schools, some being run by the government and some by private trusts. All schools follow state prescribed curriculum and use traditional methods to work with children. Under the Sarva Shiksha Abhiyan and the efforts towards Integrated Education for Disabled Children, some of our consumer group children do get access to mainstream classrooms. How much work is done with them in terms of providing special needs education is undecided as most schools have an itinerant teacher visiting the children once a week. For the remaining days, they are involved in co curricular activities like music, art and craft. d. There is a mention of Setu having a ‘partnership’ with other schools? Details on this? </p><p>We have several schools in Ahmedabad who admit children moving on from Setu to their integrated classes. These schools are the new, progressive types where financial expectations from parents are quite high. None of our Juhapura children go to any of these schools. Other children belonging to higher income families go to schools named as follows:</p><p>Eklavya School, Ahmedabad- our children are admitted in their “Indradhanush” initiative and are provided educational inputs in regular classes as well as a special class for part of the day. We have one child in grade 5 in Eklavya who is the oldest “integrated” child attending only the regular class without any special inputs from “Indradhanush”. We have also conducted an assessment camp for children there.</p><p>Sri Ram Vidhyalaya- SRV has the maximum number of children from Setu. Once again, it is a mainstream school with 2 integrated classes based on individual ability levels. With SRV, we also have started the remedial intervention unit where school going children with special needs avail of necessary therapeutic inputs to help them continue in the school and meet the demands of the curriculum. The school feels that this initiative has helped the students’ performance in school and is now recommending the same for other parents. Anand Niketan- Anand Niketan refers any child they assess as having any sort of learning difficulties. Based on the assessment report we provide, special inputs for these children in the areas of behaviour modification and alternative learning methods is planned. Delhi Public School- We have some children admitted in DPS. Other than that, we do not have any other interaction with the school. Zydus School for Excellence- Same as Delhi Public School LML School- Same as Delhi Public School e. Do the children move on to mainstream schools after leaving Setu and if they do, then do they stay in these schools? What is a general education path taken by the children who attend Setu?</p><p>Nearly 86% of children who come to Setu move on to mainstream schools. Out of these, at least 30% are still there. Some of our children are in mainstream schools since the last 5 years and are doing well. They joined various schools at preschool level 5 years ago and are spread across grades 2 to 5 at present. </p><p>There are a few reasons why children move out of mainstream schools. These are as follows:  Children develop serious behaviour problems due to less attention and are unable to continue in school due to the level of disturbance they cause in class.</p><p> Parents do not see the returns as much as they expected compared to the financial commitments and hence, after a certain number of years, they prefer to withdraw the child.</p><p> Children are unable to cope with the extremely demanding and competitive environment because of poor ability and poor teacher attitudes.</p><p> Schools decide to remove the children due to staffing problems.</p><p>In this scenario, there are three basic paths followed by children once they move out of Setu.</p><p>1. Go to mainstream school and continue there as long as possible. (In some cases, this is quite a successful experience) 2. Go to a special school and follow functional curriculum which focuses on teaching daily life and other skills necessary to become independent. 3. Remain at home and avail of special education and other services through a private tutor.</p><p>3. Questions regarding the school: a. What types of disabilities do the children have and how are they diagnosed? What are some of the ways Setu assesses these disabilities? </p><p>Setu caters to all developmental disabilities in children in the age group of 0-12 years. Main disabilities we have dealt with till date are; Autism, Cerebral Palsy, Mental Retardation, Hearing Impairment, Visual Impairment, idiosyncratic developmental delay and sensory neural problems. </p><p>Most of the children are diagnosed by medical professionals holding higher qualifications in pediatric neurology. These are professionals having independent practice and are not associated with Setu. They are referred to Setu for a developmental assessment. The developmental assessment conducted at Setu charts out the developmental profile of the child against normal parameters. </p><p>Apart from the basic developmental assessment which runs for almost 4 hours, we also use infant assessment scales like “Developmental Assessment Scales for Indian Infants” based on the Bayley’s Scale of Infant Development, Childhood Autism Rating Scale (CARS) and newborn screening schedule developed by the team at Setu.</p><p>Please also let me mention that none of the scales or assessment models we use labels the child as having a particular disability or group them together based on their IQ. We assess the children only to determine what current level they are functioning at as well as interfering factors in their adequate development in order to begin their management programmes. b. What is the classroom structure, i.e. what is the curriculum, what is the student to teacher ratio, student to computer ratio? </p><p>In early intervention unit, we follow the normal development of milestones in various skill areas as our baseline to begin working with the child. As the 0-5 years are preschool years, we do not use a set curriculum to work with the children. Most of the learning happens in an activity based environment, predominantly following the Montessori Method. All our therapy rooms are extensively equipped with teaching and learning material which the mothers and the therapists use to work with the children. </p><p>In early intervention unit, we have 1 therapist with 4 children and 4 mothers, thus always keeping a child: adult ratio of 1:1.25. </p><p>In remedial class, the children come without their mothers and work in a group of 8 with one assistant teacher and one class teacher. The main objective is to simulate a classroom situation in order to equip children with skills to cope with classroom demands.</p><p>We have 2 computers with multimedia for 4 children who can work with them with some degree of assistance. These children come for their computer class once a week and have individual access to the unit with either the mother or the therapist present to supervise and assist. c. Setu has been in existence for 7 years now and according to the proposal the organization has been funded to conduct research? What type of research is done, what resources are used to do this research? What conclusions have you drawn from this research and how are these research/results being utilized in the organization?</p><p>We have participated in many research studies being conducted by students undergoing their internships over the past 7 years. Our first formal research project was to assess the impact of early intervention on various indicators from parental perspective. The full text of the study is available on www.setuindia.org</p><p>Essentially, we wanted to see if parental perception of the impact of early intervention in India is the same as reported everywhere else in the world. This was a first of its kind study in India as the field of early intervention is very new and most organizations do not have exclusive focus on this age group.</p><p>We ran a regression analysis on the responses on each indicator and found the results to be very much on the lines of similar studies conducted elsewhere. We found that more than the change in the development of the child programmes which aimed at increasing parental participation and empowerment were found to have more impact. Our study was funded by the Sir Ratan Tata Trust, one of the most prestigious funding agencies in India. The officials of the Trust were very happy and excited about the study and have now invited us to submit a 3 year proposal to initiate programmes based on the study’s results in Juhapura. d. What are the qualifications of the therapists and the educators?</p><p>Board of Trustees</p><p>Minal Doshi, Managing Trustee, M.Sc. in Child Development, Diploma in Special Education</p><p>Meena Bhatt, Parent Member Trustee, B. Ed., Foundation Course in Disabilities</p><p>Madhvi Dhru, Chairperson, B. Sc. Speech therapy and Audiology</p><p>Akhil Paul, Member Trustee, MSW, Advanced degree in Special Education </p><p>Snehal Soneji, Member Trustee, MBA, IIM- Ahmedabad</p><p>Early Intervention Team</p><p>Rajnish Kumar Sinha, Senior Occupational Therapist, Bachelors in Occupational Therapy, undergoing PG Diploma in Health and Finance Management</p><p>Payal Trivedi, Communication Therapist, Diploma in Special Education- Speech and Hearing</p><p>Nikita Pandya, Special Educator, Diploma in Special Education</p><p>Remedial Education Team</p><p>Vaijayanti Dhuri, Assistant Educator, Caregivers’ Course</p><p>Rashmika Makwana, Special Educator, B. Ed. In Special Education</p><p>All therapists working in the organization are recognized by the Rehabilitation Council of India as professionals in the field of Special Needs Education and are on their Central Register. The Rehabilitation Council of India is a statutory body established under the act of the same name and makes registration of professionals working in the field a mandatory task failing which, the council can initiate legal action against the individuals. </p><p>Parent Counseling</p><p>Vinita Kanhare, Parent Counselor, Diploma in Guidance and Counseling Finally, what is the long-term goal of Setu, in terms of becoming self-sufficient, expanding, etc.? As explained in the concept note, we see our future role as that of a mentor organization offering a module on early screening and related services to various communities and local partners in the state of Gujarat in order to ensure that every child born anywhere in the state at least has a developmental assessment carried out at birth and has access to some level of intervention from the time the risk to development is identified.</p><p>As an organization, we want to create a model of health care for young children, which is viable and replicable in order to involve the government as a stakeholder. With this goal in mind, we will strive to work with international agencies like the UNICEF, USAID, WHO and various government ministries in the areas of Family and Child Welfare, Education, Social Justice and Empowerment and Health. Only with the involvement of state government, will the efforts be sustainable and therefore, through the project we have envisaged over the next 10 years as mentioned in the concept note, our primary aim in fund raising will be to involve the state on a permanent basis.</p>