1

Annual Report 2012-2013

SHARED VISION FOUNDATIONPROMOTING INCLUSIVE DEVELOPMENT OF PERSONS

WITH DISABILITIES IN AN INCLUSIVE SOCIETY

An initiative of Stichting Shared Vision -The Netherlands

DR. S. SHIVANANDA / CHAIRMAN STICHTING SHARED VISION

Dr. Shivananda is a medical scientist with substantial background in international scientific leadership in Europe. His field is digestive diseases.He is from a small village in Western Rajasthan. After the death of his parents at age 11 he went to schools established by Hindu monks. The schools are called Gurukul. There he learned to practice Yoga & meditation & became proficient in Sanskrit language & read Bhagvad Gita & Vedic literature. He joined itinerant Sanyasi Mandals ---travelling far & wide to temples & Yoga ashrams in Himalayan foothills, and to Raman Maharishi Ashram and Sri Aurobindo ashram in South India. He later travelled to Africa & Canada as a Yoga Guru where he had a large following. More recently (2011) he has taught “Laughing Yoga” & meditation in Spain at Trasierraa beautiful vacation place in the sun of Andalucía near Cazalla dela Sierra. After Canada--Shivananda went on to Britain & America for medical education and came to The Netherlands from the Johns Hopkins Medical Institutions in Baltimore (USA) where he was a Post-Doc Fellow.Since coming to The Netherlands, he has worked at the University Medical Centers in Leiden & Rotterdam and the Dutch National Institute of Public Health (RIVM) in Bilthoven. He established himself in the position of international scientific leadership as the Principal Investigator & Scientific Director of a European Collaborative Study on digestive diseases (EC-IBD) with a grant of € 500,000 from the European Commission in Brussels. This was further supplemented by the European pharmaceutical industry.Publications coming out of the study (see Shivananda et al. GUT 1996; 39:690-697) and the workshops and consensus meetings held during the study have led to increased clinical uniformity in the diagnosis and treatment of IBD across Europe (see Lennard-Jones & Shivananda Euro J Gastroenterol & Hepatol 1997; 9:353-359). In recognition of his work he has been invited as speaker/or chairman of scientific sessions at many international medical conferences in Europe, America, China and India; and was offered membership of the Gezondheidsraad (National Health Council of The Netherlands in (1983); the Royal Society of Medicine in London (1985), the American Association for the Advancement of Science (1997), the College of the European School of Oncology in Milan (1997), the New York Academy of Sciences (1997), and membership of the scientific

2

SHARED VISION FOUNDATIONPROMOTING INCLUSIVE DEVELOPMENT OF PERSONS

WITH DISABILITIES IN AN INCLUSIVE SOCIETY

Bio- sketch

committee of the Directorate General Health & Consumer Protection -of the European Commission in Brussels to examine the possible links between Crohn's disease and paratuberculosis (2000).After retirement he has set-up a non-profit charitable foundation called Stichting Shared Vision in the Netherlands. Its mission is to improve quality of life of the village people with visual impairment in Western Rajasthan through preventive & curative medicine (See: www.sharedvision.nl).Dr. Shivananda's wife- Maria-is Dutch. Their daughter, Narayani, is a schoolteacher and lives with her family in Olympia, Washington. And their son, Alexander, is an Engineer and a graduate of the Harvard Business School with an MBA. He has set-up a Private Equity firm in Amsterdam & lives with his family in Holland.

3Address:-Pres. Kennedylaan 188, 2343 GW OEGSTGEEST-The Netherlands

Phone: (31) 71-517 13 72, E-mail-shivananda@planet.nl, Website: www.sharedvision.nl

4

From Presidents desk

Shared Vision foundation (SVF) is a non political and nonprofit organization, It is under aegis of Blind Peoples Association, Ahemadabad and Stichting Shared Vision- The Netherlands. It is actively working in Jodhpur district in the field of preventive eye care and rehabilitation of disabled persons. SVF is currently running 4 programs:-1. Mobile refraction Clinic (MRC):- It is flagship program of SVF running since 2004. In this

program SVF sends technicians and experts to rural areas to provide quality eye care services to rural people. They are screened for any anomaly, provided medicines and spectacles. The cases which require medical intervention (Cataract) are taken to eye hospital for surgery. SVF bears all the cost of surgery, transportation and food.

2. Community based Rehabilitation (CBR):- The foundation is supporting persons with disabilities in Bhopalgrah block in Jodhpur district. The program was initiated with help of CORDAID ( a Dutch organization) after identification of the needs of disabled persons in the block. SVF has opened 3 resource centers to help children with special needs. Various activities under this project are as follows

a. Early intervention, assessment, training and education to children with disabilities.

b. Counseling, guidance and training to parents and familyc. Vocational guidance and support for economic rehabilitationd. Support for accessing government entitlementse. Awareness and sensitization and prompting rights of persons with disabilities

through disabled people’s organization3. Low Vision: - The program was started with the help of VISIO (a Dutch organization)

after realizing lack of appropriate and adequate services for Low vision persons and the scale of problem. The foundation has developed a model Low vision center to address the challenge and is providing following services through the center

a. Identification and assessmentb. Providing low vision devicesc. Training and supportd. School screening and early identificatione. Career guidance f. Training in use/using of advanced equipments

4. Care home for mentally retarded persons: - It’s a project supported by Government of Rajasthan. SVF is taking care of food, living, health and education of mentally retarded persons 24*7. The persons are stigmatized by society or their parents are unable to take care of them. A total of 100 persons are currently living at the care home.

5

Introduction

CBR programme in Bhopalgarh is running in its 3rd year. Results are summarized under various components as shown below -

HEALTH 1. Door to Door Survey

During the year, the field team identified 127 people with disabilities under various categories of disabilities. A break up of results of survey has been shown in bar graph. Compared to males, the number of female identified is less (both in females and girls) due to various reasons prohibiting women from participating actively in society. Therefore it’s a challenge for us to bring women at the forefront of change we want to see in society.

2. Awareness and Sensitization of Local Community

People in Bhopalgarh once again joined hands together to spread awareness regarding Disability among masses on World Disability day (December 3rd). CWSN, school kids and their parents rallied to spread awareness in Bhopalgarh. In the final programme, Chief Guest SDM (Sub District Magistrate) of Bhopalgarh along with other dignitaries lauded the efforts of SVF and distributed prizes to the winners of sports day. Our workers presented a small play which showed importance of community and medical intervention for CWSN compared with age old superstitious prevalent in villages today.

6

Community Based Rehabilitation

Male Female Boy Girl TotalIn 2012-13 59 29 27 12 127

Till now 1908 983 569 378 3838

3. Orientation of different community members During the year awareness creation and sensitization of masses were given high priority. Mainly teachers, Aangan Wadi Workers (AWWs), ASHA workers (Auxiliary health activist in villages) and Panchyati Raj members (local self governance members) were targeted to achieve the objectives of the program. Total 580 community members were given orientation.For bringing women at the forefront we conducted orientation of AWW and ASHA/ANM more as they are closely related with healthcare and education of children.

4. School eye screeningThis year the Foundation started school screening program to reach out to the children with eye problems. During the year, total 39 schools were visited by the program staff and conducted screening. Out of 2704 children screened, there were 375 children found with refractive errors. The school screening program also enabled us to increase our exposure in the community and teachers fraternity.

5. Cataract & other surgeriesDuring the year, there were 220 eye surgeries performed. Our target was to reach to women as their condition is often neglected compared to men. We were successful in conducting 111 surgeries on females which is at par with males.

6. RehabilitationSVF identified the need of having a physiotherapist for CWSN as there is no physiotherapist in Bhopalgarh. So Foundation started physiotherapy

7

Male Female Total 2012-13 Till NowPRI MEMBERS 80 16 96 182

AWW 0 148 148 496ASHA/ANM 0 48 48 77TEACHERS 242 46 288 452

Boy Girl Total Till Now

Students screened 1553 1151 2704 4038

Refractive error 107 76 183 375Schools covered 39 59

Male Female Boy Girl Tillnow

Cataract 108 110 1 1 521Polio 0 0 0 1 9

ItemTotal

TotalBoy Girl

No of kids receiving Physiotherapy

36 19 55

No of Sessions 28

sessions at resource center. Caregivers and parents of CWSN are also taught basic exercises as it’s impossible to give services of expert’s everyday at their doorsteps. Till now 39 children are being benefitted and are constantly getting necessary exercises by expert, caregiver and their parents. The picture shows a physiotherapy session by expert. Caregiver is also learning the routine exercises which she conducts regularly in absence of expert.

7. Assistive DevicesAssistive devices make PWD independent by giving better functionality, accessibility and mobility. This year the Foundation has facilitated many persons with disabilities to receive different devices through Government and other agencies as per the details given in the table.The picture is of assistive device distribution camp by government in which PWDs procuring devices. With our assistance 108 assistive devices was given to PWDs during the year.

EDUCATIONEarly childhood & primary education is very important as it prepares a child mentally and physiologically for future. Therefore SVF is regularly conducting classes at resource center where children are taught in curricular and co curricular activities. CWSN are also trained in making crafts. The following table shows the details of CWSN who attends classes at the resource center and indulges in curricular and/ or co-curricular activities. There were total 82

8

Assistive Devices (so far)

Device Male Female Boy Girl Total Till Now

Tricycle 39 3 10 8 60 89Wheel Chair 5 2 9 2 18 28

Crutches 16 4 5 1 26 32Cane 0 0 0 0 0 15

Hearing Aid 0 0 1 1 2 10Caliper 1 0 1 0 2 5

Artificial limb 0 0 0 0 0 2Braille Slate 0 0 0 0 0 1

Curricular Co-Curricular

Boy Girl Boy Girl

VI 5 5 4 5OH 0 2 0 2HI 5 7 4 6

MR 28 11 16 10MI 0 0 0 0MD 2 1 1 1CP 10 6 9 7

Total 50 32 34 31

children participated in curricular activities and 65 children participated in co-curricular activities during the year.In the pictures, one can see children engaged in activities with caregivers. Owing to the needs of individual attention, caregivers have made IEP of 85 students according to which they are trained. Apart from resource center caregivers also conduct home visits and impart home based education to the kids. Since many children are studying in the government schools, caregivers also go to schools to help Government teachers teach CWSN. The detail of various activities under education component has been given in the table below.

The progress of education component in last one year

The children are getting support by caregivers in 3 ways 1. At center: - Here children are

supported at the resource centres opened in villages where about 14 children are coming on regular basis.

2. Home based: - A total of 39 children who are unable to come to center due to various reasons are supported individually at their home by caregivers.

3. Group based: - Students are taught in groups because in group they tend to learn more than their regular curriculum by interacting with their peers.

4. School based: - Caregivers support CWSN with their studies by acting as a bridge between the teacher and themselves. Not only it helps in learning but the teachers also understand specific need of the child.

LivelihoodSKILL DEVELOPMENT

The program is supporting people with disabilities to become contributing member of their families and community in future

9

ItemTotal

TotalBoy Gir

l

Support to Children 47 31 78

1. Centre Based 8 6 14

2. Home Based 23 16 39

3. Group based 2 2 4

4. School Based 14 7 21

Individual Education Plan 55 30 85

Home Visits 1326 1326

School Admission 10 3 13

Escort Allowance 9 9 18

Teaching Learning Material 32 21 53

Cultural & Sports Activities 56 48 104

Component Male Female Boy Girl Total in

2012-13Till

NowSkill Development 19 3 1 0 23 75

or in present. Since there is lack of employment opportunities in rural area it is necessary to learn skills that can be used for income generating activities. PWDs and CWSN are trained in such trades like garland making, stitching etc which can be used for income generation.

EMPLOYMENT

Foundation also helps them in getting associated with jobs via government scheme such as NREGA (National rural employment guarantee act). This year the program was able to make 21 job cards and assisted 68 persons in getting employment in NREGA.

ENTITLEMENTS

Foundation actively helps in availing rights of PWD via various government entitlements. Performance under various components is shown in the table.

SOCIALThe program has taken many initiatives under the following categories-1. Home Visits: Field organizers and caregivers conduct home visits to assist and support PWDs in their day to day life and help them solving the issues faced by the individuals.2. Family/ Individual Counseling: Counseling is very important part of the program which includes individual and family members. This year we conducted a parent counseling camp (Pic at right) which was very successful as large amount of parents and CWSN came in to take benefit from counseling.3. Cultural Programme: During the year many children with disabilities took part in cultural program organized by their respective schools. Program staff helped children in preparing for such programs. The performance of the children were proof that they can do work just like other children’s.

4. Recreational Activities:

10

Component Male Female Boy Girl Total in

2012-13 Till Now

JOB CARD NREGA 14 7 0 0 21 31Employment In NREGA 32 36 0 0 68 94

Component Male Female Boy Gir

lTotal in2012-13

Till Now

1. Disability Certificates 29 12 35 20 96 10382. Bus Pass 30 7 37 22 96 4463. Rail Pass 22 6 22 8 58 1824. Pension 14 18 2 0 34 118

All work and no play make Jack a dull boy. This century old Idiom was holding its roots in Bhopalgarh for Children with special needs. Despite their strong will to play with normal kids, they were marginalized. SVF brought change in the condition by starting sporting activities at resource center which was the first small step. Then we convened CWSN in Bhopalgarh block and conducted block level sports meet where CWSN can show their prowess. The meet was conducted on 28th November in which 31 CWSN participated (VI, HI, MR, OH) in games such as Race and soft ball throw. Star performer of the event was a Blind Kid named Surendra who stood third in 75 meter race (category Visual impairment 11-18 Year old).

5. Skill development and training programme: A 15 days skill development and training progrmme was conducted for blind and low vision students. The programme was aimed at teaching students Orientation and Mobility, ADL and computers for their overall personality development. The most important attraction of the programme was swimming in which 11 VI children participated and out of which 6 students learned swimming exceptionally well. 15 Students were also taken to education trip to National Association for the Blind, Mt Abu to acquaint them with vocational activities and courses.

6. Visit to zoo & Mandore Garden To acquaint children with their environment and nature SVF took children to local zoo and Mandore gardens. The trip was very instrumental in pushing curiosity of children who were deprived of a healthy understanding of natural world. For the first time many saw the animals alive out of their book. The trip ended with requests from children for a repetition and lots of questions about natural world.7. Community coach training programme level 2nd The program was a joint venture of Special Olympics Rajasthan chapter and Shared Vision foundation. A total of 60 persons participated in training. They were imparted practical and theoretical knowledge on games played in Special Olympics and how to train CWSN.

11

8. Educational trip at Kherapa DhamTo acquaint CWSN with their surroundings and to socialize them with people, they were taken to local community temple called Kherapa Dham. The temple owners were delighted to meet the children and insisted SVF to regularly bring the children at the place. Children also like the mix with people and see new places.

EMPOWERMENTDisabled peoples organizations are the organizations formed, managed and represented by disabled persons. Such organizations are very important for their empowerment as it gives them opportunity to represent themselves independently. DPOs enable PWDs to voice their concerns in a union. It is also an effective way of increasing connectivity and brotherhood among PWDs. So SVF is active in the field enabling persons to recognize their collective power by forming DPOs. Currently 6 DPOs are active at the cluster level in Bhopalgarh comprising of 67 PWDs and they are actively raising issues through regular meetings. They are also given information in use of Right to information using which they can advocate for their rights with the government. It is also enabling them to be independent and aware citizen.In this year a total of 280 persons attended DPO meeting and were sensitized towards their rights.

12

Male Fem Boy Girl Total Till now

DPO Meeting 195 46 32 7 280 874

Success StoryName : Rekha NathFather’s name : Kushal Nath Age : 15 yearsSex : FemaleLocation : Asop (Bhopalgarh)Category : OBC (Other Backward Class)Diagnosis : Visual Impairment (Low Vision)

FAMILY AND PERSONAL SITUATIONRekha is 15 years old girl who is challenged with Visual Impairment.

SITUATION OF THE CHILD BEFORE OUR CONTACTHer condition while identified in survey was worrisome. She used to wander randomly at places and never used to talk with anyone. She never used to obey her parents and hence was a trouble for them. She used to do things as she likes, in other words very stubborn and was very insecure about herself. She was unaware of social etiquettes and also had problem in recognizing her relatives. She was not associated with school or any other mode of study as her parents used to think that she would be unable to do her studies due to her visual impairment.

WHY SHE WAS SELECTED She was selected as our caregivers saw tremendous potential in the child and also she was in mid-teen which is a critical phase in her development. Also being a female child it was clear she was neglected because for her parents her disability was proving extra weight for them to bear. Lack of rehabilitative services was also one measure cause that was increasing challenges she was facing.

THE PROJECT HELPED HER BYWe helped her by arranging her clinical assessment by ophthalmologist and psychologist which diagnosed the challenges she is suffering with. She was diagnosed as Low vision, so we had her optometric and functional assessment at our low vision center. Then we helped her in getting her disability certificate and bus as well as rail passes (Concessions given by government which they were unaware of). Our caregivers then focused on the major challenges faced by her through education.

HOW PROJECT CHANGED HER LIFEDue to the right intervention, Rekha developed confidence to converse with persons. She learned to greet people and recognizes her relatives. She has learned English and Hindi alphabets and some tables. She can conduct her daily living activities on her own and can take care of her personal hygiene. She now goes to school and respects her teacher.

WHAT SHE IS DOING NOW

13

She is a regular student at the resource center in Bhopalgarh. She comes there to take part in activities and also to seek help from caregivers regarding her school work and daily living activities. She also goes to school regularly.

ACTIVITIES SHE LIKESShe likes to sing. She always makes sure to give a singing performance on stage during programmes SVF conducts in Bhopalgarh.

FUTURE PLANSHer future plans includes making her well versed in Braille and imparting education according to her needs.

14

MRC the flagship program of the SVF is steadily moving towards the goal of making Jodhpur a cataract free zone. In its 9th year SVF has gone to the remotest of villages to provide quality eye care for those who can’t afford the cost of treatment which includes transportation, medicines, doctor’s consultation and surgery. MRC is not only proving excellent model of mitigating cataract and other diseases but also enabling spread of preventive eye care information.

PROGRAM HIGHLIGHTS (SINCE 2004)

Year 2004-05

2005-06

2006-07

2007-08

2008-09

2009-10

2010-11

2011-12

2012-13 TOTAL

Number of Camps Organized 3 2 11 12 13 17 7 25 18 108

No. of Patients Examined 1,083 2,241 7,778 9,649 8,466 13,783 4,753 8,020 6,137 61910

Number of Spectacles Issued 364 1,080 5,947 7,670 6,548 10,080 3,510 4,071 2,452 41722

No. of Cataract Operations Carried out

175 104 219 299 115 220 138 273 247 1790

Due to our gradual understanding of the field, we have increased our efficiency of carrying out cataract operation with respect to total number of patients screened in the year 2012- 13 (From 3.4% last year to 4%). We are constantly adopting new management techniques for further increase in efficiency and after having a dedicated mobile van this is further bound to improve.

PROGRESS IN 2012-13

1. In JodhpurFrom April 2012 to March 2013 our MRC team conducted 16 camps in various rural areas covering a total population of 1,02,000 persons availing them quality eye care services through our camps. A total of 4903 patients were screened and 2091 were provided glasses correcting their refractory errors. Out of these 466 were identified for cataract and 194 of them had successful surgery at base hospital and others are in line for surgical intervention.

15

Mobile Refraction Clinic

Date Camp Site Population Covered

Patients screened

Eye glasses Given

Cataract Identified

Cataract operated

09.04.2012 Sathin 14000 378 159 41 18

14.04.2012 Bap 12000 577 228 44 31

19.09.2012 Artiya Kalla 5500 400 177 44 10

23.11.2012 Nadsar 6000 194 66 35 10

07.12.2012 Palari Ranawata 4500 219 113 24 9

21.12.2012 Barni Khurd 6000 320 130 35 27

28.12.2012 Choupasni Charnan 5000 194 106 11 1

4.01.2013 Khangata 12000 609 197 62 1918.01.201

3 Basni hari singh 5000 277 141 23 3

25.01.2013 Bandara 5000 308 122 32 18

1.02.2013 Kur 4000 280 131 32 1715.02.201

3 Choda 4000 175 102 21 7

22.02.2013 Shubhdand 4000 215 123 15 8

8.03.2013 Hiradesar 5000 254 119 18 415.03.201

3 Nandiya Prabhavati 4000 231 87 15 8

22.03.2013 Dhawa 6000 272 90 14 4

Total 16 camps 102000 4903 2091 466 194This year the maximum number of OPD was recorded at khangata at 609.

16

The graph below shows total number of identified cataract cases with respect to total number of cataract operation at individual camps. The highest number of cataract operations happened at Bap which was 31.

2. In BarmerAfter successful conducting camps in Jodhpur and Jaiselmer this financial year our team stepped into Barmer on February 2013. In 2012-13 we have conducted 2 camps and the reaction and support we got was staggering. We have managed to successfully conduct screening of 1234 persons and 361 of them were provided glasses. Cataract was identified in 97 persons and among them 53 persons had successful cataract surgeries.

17

Barmer Camp Site

Population Covered

Patients screened

Eye glasses Given

Cataract Identified

Cataract operated

3.02.2013 Samdari 14000 400 169 42 2810.03.2013 Siwana 19000 834 192 55 25

Total 33000 1234 361 97 53The highest number of OPD was recorded at Siwana at 834 as seen easily from the blue bar in the graph below.

The most number of cataract cases were identified at Siwana which stands at 55. 25 of them had their operation done.

3. In OPD (at centre)

The OPD is getting constant inflow of patients due to quality of services we are offering. We have screened 5686 patients, distributed 2511 glasses and have identified 353 cataracts.The picture shows poor girls from NGO SAMBHALI who visited our OPD for eye screening. They were

18

April 2012- March 2013

Patients screened

Eye glasses Given

Cataract Identified

OPD 5686 2511 353

delighted to receive eye glasses improving their vision the girls thanked SVF as now they can see well and study with ease.

19

Low Vision Program

Our state of the art low vision centre is established with the help of VISIO (a leading Dutch organization working with blind and low vision people in the Netherlands).The Centre was Inaugurated on April 14, 2011 in presence of Dr. Karel de Vries (low vision expert, Royal Dutch Visio, the Netherlands). During his first stay (April 2-15, 2011), Dr. Vries provided all the technical support to the centre and conducted low vision training for SVF staff with hands on experience. Dr karel again honed the technical and practical skills of low vision staff during his second visit (28 Nov 2011- 9 Dec 2011) by giving training on conduction optometric tests and knowledge on conducting perimetry and interpreting the results generating from Visual Field Analyzer (VFA). He further supported the programme staff in developing various formats and keeping records of low vision clients.The centre now also has a very advanced testing machine for Glaucoma –Visual field analyzer (Humphrey –carl zeiss), making it into one of its kind Low vision centre in Rajasthan.

SCREENING AND ASSESSMENTSince April 2011, the Foundation has been doing low vision screening and assessment at the centre and various other places including special schools for the blind, in CBR programme and at mainstream schools. The following process is adopted at the centre. A person is accepted for screening after getting a thorough check up by ophthalmologist. If he comes directly he is referred back to ophthalmologist, as the clinical information is important in assessment. In stage two we conduct optometric and functional assessment where patient undergoes a series of tests which are used to make training plan and to prescribe aids and appliances in third stage. The third stage also involves training a person in the use of optical and non optical aids for this a detailed training plan is made for every individual. After a person has received his training we give him regular support through constant feedback.

20

LOW VISION ASSESSMENT

In the year 2012-13 the foundation has done a total of 135 assessments (78 clinical and 57 functional assessments.) The following graph shows total clinical assessments happened in 2012-13 and till now. The data is broken up according to sex and age.

This table tells the number of new patients that came for low vision assessment in 2012-13 and till now. This year, many low vision persons are referred to us by ophthalmologists practicing in private and government institutions and sought our expertise in determining the condition of low vision.

Follow up table refers to the number of person who came to our center for regular assessments due to their impairment. The table shows number of follow up patients in 2012-13.(Note:- Till now refers to the time period from 10.12.2010 till December 2012)

FUNCTIONAL ASSESSMENT

21

Functional assessment is very important in knowing a person’s level of function and ability to perform tasks safely and efficiently. With the help of functional training the Low Vision person learns how to use residual vision and being self reliant in day to day activities. After getting valuable inputs from the clinical/optometric assessment it’s necessary to test the person in real life situations to assess the functionality and residual vision. Based on data generated from functional assessment we devise training plan for the Low vision person. We have conducted 54 functional assessments and currently about 50 training plans have been prepared and we are actively working with the persons who are coming at center. Visual field analysis of 56 persons has been conducted providing valuable inputs in diagnosis and management of their impairment

LOW VISION AIDS AND DEVICES

Low vision centre is now fully equipped with latest aids and appliances that are required to train a low vision person in living independently (optical and non optical devices like magnifiers, cane, reading stands etc). Emphasis is also put on taking feedback from the low vision person and bringing in required change in the low vision aids n appliances or finding one with it. We are experimenting with the development of aids and appliances on our own and have initially made typoscopes and reusable rough booklet (bold lines) for low vision persons. After training 49 optical and non optical devices have been issued to persons who are using them in their daily life.

TRAINING IN USE OF OPTICAL/NON OPTICAL DEVICES

Low vision persons are given training in use of optical and non optical devices then they are issued the device to be used. Thorough training under the guidance of expert enables them to

22

Optical DevicesSpectacles 17Magnifiers 26

Non Optical Device 6Total 49

use their residual vision at the maximum. During training classes individual needs are carefully monitored and the findings are used in the training itself. The pictures shown are from such training class in which visually impaired persons are learning to use optical devices. They are using the prescribed glasses to read and get used to it. The training generally lasts for 3-7 days until a person is fully adapted to the prescribed optical/non optical device.

23

COMPUTER TRAINING CLASSESBlind and low vision students are trained in use of computers using JAWS. They are taught basic information regarding computers and MS-office. The picture here shows training classes of children from blind school practicing MS-Office. Rahul has completed classes on general orientation, basics in computers and MS-office. Now he can easily use computer to read, write and create documents for his learning. VOCATIONAL / JOB TRAINING

Center has provided job training to Low vision persons. We are training them in basic computer applications like MS-Office. We conducted a 15 day camp in blind school in which knowledge regarding computers was imparted to 28 children about to finish high school. The computer training is enable them to apply for government jobs and pass computer courses as we introduced them to accessible technology like DAISY.Apart from this we have conducted job oriented computer training classes of 27 university students from Pragya Niketan (university hostel for disabled students) at our computer training room in office. We have also trained working professionals. For ex Mr Rajendra Gehlot and Mr Megh singh are bank Clerk and teacher. Computer training has enabled them to be more productive in their work and paved way for promotion in their job. Both have received training in using low vision devices at the center.

SUCCESS STORY

24

Name : Dev Kumar PariharAge : 45 yearsProfession : BusinessDisability : Visually impaired (Low Vision)

Dev Kumar Parihar is a resident of Jodhpur. He is a commerce graduate and is into garments business. Dev kumar came to us for Low Vision assessment and intervention to solve his problems. After assessment we found out he is a Low Vision person and his vision is progressively degenerating due to retinal diseases and glaucoma. Due to progressive vision loss he was facing many difficulties in doing his business and conducting tasks such as reading, writing and travelling. He was unable to read his accounts and differentiate between colors of cloth. Due to sudden onset of such challenges he was also stressed about his future. He was oblivious of the aids & appliances and IT tools which was making his life challenged.

INTERVENTION BY US (SVF)

After he shared his problems with us and getting a proper assessment we did regular counseling sessions. The sessions ignited the hope in him of being independent and able to do work in future even if he will get totally blind. We made a training plan well suited to his needs. He was given optical and non optical aids and training to use them. He was introduced to computers and accessibility software such as JAWS. We also customized his personal computer at home with accessibility software. He is a regular visitor at our center and under constant training.

RESULTS

1. The counseling sessions and constant intervention by us lowered his anxiety and depression.

2. By using optical and non optical aids, he has started to read.3. He has learned to use computers and now he surfs internet and loves to read articles. He

is an avid reader of BBC Hindi.4. He can work on Microsoft office using basic functions.

FUTURE PLANNING

He wants to learn TALLY so that he can work on accounts and even if he gets totally blind he can easily get a job. So we are planning to slowly teach him advanced computers in future.

25

INFORMATION ABOUT THE PROJECT AND CENTER

The project was conceptualized in the budget declaration 2010-2011 by Government of Rajasthan. Government felt the need to establish a care home for mentally retarded persons with a capacity of 250 residents in the divisional headquarters, Jaipur and Jodhpur. To bring this deceleration into action the government selected Blind Peoples Association, Ahemadabad to run the project at Jodhpur under as per सहायता अनुदान निनयम 1972 क उप निनयम (ख ) ( Help grant rule 1972 क Sub rule (ख ) ). The Care home was started in May 2012 and initially 16 mentally retarded persons were admitted. It currently has strength of 92 mentally retarded persons and staff providing 24*7 care services.The center is currently being run in the premises of Nari Niketan (Home for Marginalized women) which is a government set up as permanent residential home is under construction. As the current center is operated in a government set up which is also surrounded by other government institutions and police station, it offers a very safe environment.

SERVICES PROVIDED IN THE CENTERThe care home provides 24*7 services to the residents. The services needed for intellectually challenged persons are as follows -

1. Food: - Hygienic and nutritious food is provided to the residents. The food is made in controlled environment in the mess by experienced kitchen staff. Special food is also provided to sick residents as per doctor’s advice.

2. Medical aid: - Experienced Nurses are appointed to take care of the medical needs of the persons. The care home has a well managed system of storage and timely distribution of medicines. The center also operated a van 24*7 which is used in the times of medical emergency.

3. Dormitory: - The center has separate dormitories for male and female residents. Every resident is provided with a separate bed and each room has its own lavatory.

4. Education: - The Care home also takes care of the intellectual development of the residents which is the important job. The aim of the Care home is to make residents vocationally active and engage in jobs according to their intellectual and physical abilities. For this the institution has deployed special educators and psychologists who work together for development of residents.

26

Care Home for Mentally Retarded Persons

STAFF AT CARE HOME

The activities at care home are carried out by a team of 32 persons round the clock. The table at right shows the number of staffs at care home. The staff works in shifts in male and female wing respectively..

DATA OF RESIDENTS

The tables show the data of the residents of care home. The table gives counts of residents according to their age and disability. In first table we can see 68 males are challenged by one of more disability and 10 of them have some terminal illness. Similarly in females 46 of them are disabled and 27 of them suffer from an illness which is epilepsy in their case. A breakdown of the type of disability and illness according to age has been given in lower tables. The following table shows the Breakdown of disability in males and females age wise of 68 males and 48 females as shown in first table.

(Abbreviations: - MR= Mentally retarded, CP= Cerebral Palsy, HI= Hearing Impairment, OH= Orthopedically Handicapped, VI= Visually impaired, MI= Mental illness)

27

DESIGNATION CountA.N.M. 2CARE GIVER 20CARE TAKER 3INCHARGE CUM WARDEN 1SECURITY GARD 2SUPPERVISOR (F) 2SUPPERVISOR (M) 1SUPPERVISOR (M) CUM SP. EDUCATOR 1

Grand Total 32

AGE»Disability

Male

Total

Female

Total0 to 18

18above

0 to 18

18abov

eMR 36 21 57 18 23 41

MR+CP 0 1 1 0 3 3MR+HI 2 1 3 0 1 1MR+OH 4 2 6 0 0 0MR+VI 1 0 1 1 0 1MR+MI 0 0 0 0 2 2Total 43 25 68 19 27 48

FACILITY MANAGEMENT

In a facility comprising approx 100 residents, taking care of their health and safety is challenging. To tackle with this challenge we have taken following steps for the management of health and safety of residents.

Health1. Residents are categorized based on their IQ level and previous health records and they

are under constant watch of caregivers and nursing staff.2. Periodic checkup of residents is conducted

by dentists, physicians, psychologist and psychiatrist etc.

3. Children with terminal illness or with malnutrition are kept under supervision of a single caregiver. These specially appointed caregivers take care of all the requirement of the resident including medicine and food as prescribed by doctor.

4. Constant checkup of the food is conducted in the mess; sick children are provided food as per recommendation of doctor.

5. The process of storage and distribution of medicine is properly documented (Medicine distribution log) and streamlined. Medicines are distributed to children by nurses with the help of caregivers as per prescription which is reviewed by a nurse and supporting staff.

6. A separate medicine distribution log is maintained for temporary medicines. 7. Sick children are referred to doctors with a slip containing the symptoms being noted by

trained nurse. Thereby helping doctors in best possible diagnosis.8. If residents are admitted in hospital, caregivers appointed to take care of resident at

hospital.9. Staffs are oriented by nurses in taking care of their own health while dealing with sick

residents.10. A water filter has been installed to get hygienic water all the time.

Safety 1. The beds of the residents are customized from sides

which will arrest their fall in sleep.2. The first floor of the facility has been installed with

steel grills, thereby adding to their safety. The entry and exit is being monitored by a security guard and residents are accompanied by caregivers if they are out.

3. The electrical switches have been uninstalled.4. Hyperactive kids are always kept in vigil and

younger residents are not mixed with them.

28

5.Hygiene management1. Supervisor and senior staff regularly check the

standards of personal hygiene of children and works with special educators to improve them.

2. Nursing staff also assist caregivers in dealing with sick children.

3. Residents are given drinking water in clean tanks.4. Utensils are washed thoroughly in a 3 way

process: 1. wiping with clean water 2. Cleaning with soap based water, 3. Wiping with clean water.

The cloths of residents are collected, washed and sun dried for longer duration.Many children are now toilet trained and others are in the process. The beddings of the residents who are severe to profound and not toilet trained are lined with MACINTOSH which is a special grade rubber sheet used in hospitals.

Safety rules 1. Mixing of male and female residents as well as staff is selectively and under observation.2. Caregivers and security guards watch over entry and exit gates.3. The rooms of the residents are regularly checked for any stolen food or potential

harmful objects.4. Log of every person is recorded upon his entry and exit of facility.5. Corporal punishment of residents is banned.6. Caregivers are assisted with psychologists while dealing with hyperactive children.

Daily routine time tableTime Daily routine

Morning

Waking up residents and helping them in cleaning roomsBrushing and toilet choresBreakfastPreparing residents to be sent to hospital for checkup and distributing medicinesPrayerNormal bath/sponge bathYoga

Afternoon

Co-curricular activitiesLunchHousekeepingDrawing and craft class

Distribution of medicineRestTeaSinging and dancing

29

Evening

Sport classesDinnerSocializingPrayer and meditationDistributing medicines

Preparation for sleep

ACTIVITIES AND IMPORTANT EVENTS AT CARE HOME

The following table provides details of activities happened at care home since the inception of program

Month Activity

Feb 2012 An announcement was made by SJ & E officials at seminar on CBR in Jodhpur that the

Department would partner with BPA to run Care home for mentally retarded persons in Jodhpur.

March 2012 Necessary order was passed to hand over the work to BPA.

April 2012 Four rooms were allotted in the Nari Niketan building.

May 2012

Conducted survey of Mentally Retarded persons in Jodhpur covering all major slums.

Conducted interview of staffs and warden.

Operations started at Care home, initially 16 persons got admitted.

June 2012

Special educator was hired to work with mentally disabled persons. Activity planning for residents was done. Teaching learning material was brought for the residents.

MR persons were taken to Mandore Garden for picnic.

Mrs. Aditi Mehta, Additional Chief Secretary, Dept. of Social Justice & Empowerment, Government of Rajasthan visited Care home for program monitoring.

July 2012

70 Mentally retarded children (35 male and 35 female each) based at Govt. Care home, Jaipur were transferred to Jodhpur care home.

Counseling and interview of every new resident was done to know his/her immediate needs.

Conducted interviews for new workers at MR home.

August 2012

Rooms of the top floor were issued by the government.

Separate wings were created for male and female residents.

Residents were divided by special educators as per their categories i.e. mild, moderate, severe and profound.

September 2012

A seminar on ‘Management of care home for Mentally Retarded persons’ was conducted at Hotel Sri Ram International. Officials from Ministry of Social Justice and Empowerment and other departments participated. Mrs. Aditi Mehta (ACS, SJ & E Govt. of Rajasthan) was Chief Guest with special guests Mr. Hens Welling (VISIO), Dr. Bhushan Punani (Executive Director-BPA Ahmedabad), Mrs. Nandini Rawal (Project Director-BPA Ahmedabad), Usma Das (Special Educator- MR) .

Hon. Chief Minister of Rajasthan Shree Ashok Gehlot and Dept. of SJ & E minister Shree Ashok Bairwa visited center on September 16, 2012.

30

Ganesh Festival was celebrated for a span of 10 days.

October 2012

A vehicle was purchased for the care home.

Residents were taken for education tour at Mandore Gardens.

November 2012

A dental camp was organized in which assessment of oral health of residents was done. Later, it becomes a regular feature with weekly camp.

Diwali festival was celebrated at center.December

2012 Residents were selected to participate in block level sports meet for CWSN at

Bhopalgarh block.

Jan 2013 New year celebration Vivekanand Jayanti Republic day

Feb 2013 Training of care home staff at BPA, Ahemadabd

March 2013

Visit of Vimal ben from BPA, Ahemdabad Picnic at ummed and mandore gardens Holi celebrations

VISIT OF HONORABLE CHIEF MINISTER ASHOK GEHLOT (SEPTEMBER 2012)

Honorable chief minister of Rajasthan Shri Ashok Gehlot visited care home along with Minister of social justice and empowerment Shri Ashok Bairwa. Chief Minister met residents of center and took info on the services and programs being run. He met Dr Geert van Etten and Dr Hans welling and was happy to see the commitment of the organization in inculcating standards and practices of developed world.

TRAINING OF GOVERNMENT OFFICIALS AND CARE HOME STAFF ON MANAGEMENT OF CARE HOME (SEPTEMBER 2012)

Government, non government officials and staff of care home attended one day workshop on “Management of care home for mentally retarded persons” at SVF office. Experts from Holland and BPA Ahmadabad shared their valuable expertise on the topic.

CULTURAL CELEBRATIONS (NOVEMBER 2012)

Residents learn their culture by celebrating festivals at the center. The picture on the left shows residents celebrating ganpati festival

31

in which they deployed idol of ganpati for 9 days in care home. Each day they participated in special prayers and learning from special educators about the festival. At right residents are celebrating diwali.REPUBLIC DAY CELEBRATION (REPUBLIC DAY 2013)Republic day was celebrated by staff and residents with zest and vigour. Many dignitries and stakeholders of the society were amazed to see the performances by residents showing their hidden capablities. The residents performed item such as group exercise, song and dance based on nationalistic themses.

FUTURE PLAN

1. With proper medical intervention preparing medical profile of every resident.2. Capacity building of staff.3. Improving infrastructure of the building as per needs.4. Achieving sanctioned operating limit of 250 residents and required staff.5. Preparing a comprehensive education & rehabilitation plan for every resident.6. Setting up a vocational training center for skill building of residents.

32

Other activities during the yearONE DAY WORKSHOP ON MANAGEMENT OF CARE HOME FOR MENTALLY RETARDED PERSONS (SEPTEMBER 2012)A one day workshop was conducted on management of care home for Mentally Retarded persons. It was chaired by Mrs. Aditi Mehta (ACS, SJ & E, Govt. of Rajasthan) with Mr. Hans Welling (International president -VISIO), Dr. Bhushan Punani (Executive Director-BPA Ahemadabad), Dr Geert van Etten (SSV- The Netherlands) and Mr. SR Meena, director, Directorate of people with special abilities, SJE, Jaipur as special guests. The workshop was attended by deputed government officials, staff from SVF and stakeholders to learn about the management practices involved in running a care home. Participants were eager to learn the management practices used in developed countries and the ones used in India which improved their knowledge and skills.

President Prof. OPN Calla (Radio Scientist)

Vice President Mr. Sukh Raj Mehta (Philanthropist)General SecretaryTreasurer Mr. Madho Singh Bhandari (Businessman)Member Dr. Bhushan Punani (Rehabilitation Management Expert)Member Dr. Bhupendra Singh Chauhan (Ophthalmologist)Member Mr. Jeth Mal Boob (Businessman)

SHARED VISION FOUNDATIONPROMOTING INCLUSIVE DEVELOPMENT OF PERSONS

WITH DISABILITIES IN AN INCLUSIVE SOCIETY

Board Members

DUTCH

Cordaid

Visio-International

Eye Care Foundation-Amsterdam

Rotterdam Foundation for the Blind Individual Dutch donors

INDIAN

Directorate of people with special abilities, Department of Social Justice & Empowerment, Government of Rajasthan

Individual Indian Donors

PARTNER – COORDINATING ORGANIZATION

BPA-Ahmadabad

SHARED VISION FOUNDATIONPROMOTING INCLUSIVE DEVELOPMENT OF PERSONS

WITH DISABILITIES IN AN INCLUSIVE SOCIETY

Our donors & Partners

HEAD OFFICE

290-291, Manji ka Hatha, behind suncity hospital Paota, Jodhpur, Rajasthan Ph: - 0291-2542005, E-mail:- svfjodhpur1@gmail.com

CARE HOME FOR MENTALLY RETARDED PERSONS

Nari Niketan Bhawan Mandore road8 miles, behind police stationJodhpur, RajasthanPh: - 0291-2542005, E-mail:- svfjodhpur1@gmail.com

Our offices

Organizational hierarchy & Staff detail

Stichting Shared Vision- The

Netherlands

Chairman of the board

Dr. Shiva Shivananda

Board MembersDr. Geert van Etten

Dr. Henk van Slooten

Gerard Beunk Dr. Jeremy D. Bangs

Shared Vision Foundation

Jodhpur

PresidentProf. OPN CallaVice President

Mr. Sukh Raj MehtaTreasurer

Mr. Madho Singh BhandariMember

Dr. Bhushan PunaniDr. Bhupendra Singh Chauhan

Mr. Jeth Mal BoobDirector

Mr Pramod Kumar Gupta