mid-term evaluation of sense i(i)

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Mid-term Evaluation

DFID Global Poverty Action Fund Programme:

Expanding Services for Deafblind People in India 2012-2015

(DFID contract reference: GPAF-IMP-009)

June 2014

Sneha Joseph---Kottayam Social Service Center

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Contents

Acronyms and abbreviations ........................................................................................................................ 4

Basic information .......................................................................................................................................... 7

Executive Summary ....................................................................................................................................... 8

1) Report Findings Impact and Overall Results ....................................................................................... 12

2) Key Evaluation Criteria and Value for money (VfM) ........................................................................... 15

Relevance ................................................................................................................................................ 15

Effectiveness ........................................................................................................................................... 17

Efficiency ................................................................................................................................................. 19

Sustainability ........................................................................................................................................... 20

Impacts .................................................................................................................................................... 21

3) Risk Management & Mitigation .......................................................................................................... 25

4) Project Accountability to Stakeholders ............................................................................................... 26

5) Lessons ................................................................................................................................................ 27

Innovation: .............................................................................................................................................. 27

Equity and Gender .................................................................................................................................. 27

Capacity building ..................................................................................................................................... 28

Monitoring & Evaluation ......................................................................................................................... 28

Approaches to Empowerment and Advocacy: ....................................................................................... 28

Others lessons learned ........................................................................................................................... 29

Applied learning ...................................................................................................................................... 29

6) Conclusions ......................................................................................................................................... 31

Summary of achievements against evaluation criteria........................................................................... 31

Supporting statistics ................................................................................................................................ 33

Summary of problems and issues encountered. .................................................................................... 35

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Overall impact and value for money of GPAF funded activities. ............................................................ 36

7) Recommendations for the future ....................................................................................................... 37

Annexes ....................................................................................................................................................... 42

SWOT Analysis in assessing the project to date ..................................................................................... 42

Strengths ................................................................................................................................................. 42

Weaknesses ............................................................................................................................................ 42

Opportunities .......................................................................................................................................... 43

Threats .................................................................................................................................................... 43

Case Study Shiva-Caritas Kottayam ..................................................................................................... 46

Case Study – Sneha Joseph ..................................................................................................................... 49

Case Study - Caritas Goa ......................................................................................................................... 51

Case Study – Bhupendra Deshpande ...................................................................................................... 56

Sample Innovations ................................................................................................................................. 58

Doctors/Hospitals: .................................................................................................................................. 62

Organizations visited by Goa staff as part of awareness and assessments ............................................ 63

Schools/Colleges visited by Goa staff as part of the awareness programs :- ......................................... 64

Some Samples of material published as part of this project .................................................................. 66

Compilation of responses from partners to key evaluation questions (compiled by Uttam Kumar)..... 67

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Acronyms and abbreviations

A&A Aids and Appliances for persons with disabilities

ADHD Attention Deficit Hyperactive Disorder - a type of disorder, not

recognized by law, in India

APT Appropriate Paper Technology, a low-tech paper-based technology ,

developed in Zimbabwe, for developing assistive devices and modified

furniture for persons with disabilities

B Ed. Bachelor of Education

BPA Blind People’s Association, a leading NGO in Gujarat

CBM Chistoffel Blinden Mission ( a reputed international voluntary

organization )

CD Compact Disc

CP Cerebral Palsy ( a type of disability, mandated by Indian law)

CSR Corporate Social Responsibility, now mandated in the Companies Act

2013

CWSN Children with Special Needs, terminology used in SSA-MHRD

DB Deafblind

Dip Sp.Ed. Diploma in Special Education

DONER Department of North East ( A Ministry in the Government of India, for

the specific welfare of 8 States in the North Eastern part of India)

EFA Education for All

EI Early Intervention

ENT Ear Nose Throat

GOI Government of India

HBE Home-based education

HI Hearing Impaired

HIES Household Income and Expenditure Survey

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ICDS Integrated Child Development Scheme ( the largest child welfare

program in the world )

ICMR Indian Council for Medical Research

ID Intellectual Disability

IE Inclusive Education ( referred to as Mental Retardation in Indian law)

IEP Individual Education Plan ( sometimes called Individual Program Plan-

IPP )

IGNOU Indira Gandhi National Open University ( the largest open university in

the world)

IMFAR An independent body for conducting medical research in India ( they

have taken over 9 years to develop/field test an overarching and

indigenous tool for identification of childhood disabilities )

JS Joint Secretary

KSID Kerala State Initiative on Disability

MD Multiple Disability

MDGs Millennium Development Goals

MHRD Ministry of Human Resource Development

MOHFW Ministry Of Health and Family Welfare

MP Madhya Pradesh, a State in central India

MR Mental Retardation ( same as ID)

MSJE Ministry of Social Justice and Empowerment/GOI (nodal Ministry for

disability)

MT Master Trainers

NAB National Association of the Blind, a leading NGO, with chapters in

many States of India

NGO Non-Governmental Organization

NHFDC National Handicapped Finance and Development Corporation ( a

public sector initiative under MSJE for providing easy loans to

persons with disabilities)

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NICU Neonatal Intensive Care Unit

NIEPMD National Institute for the Empowerment of Persons with Multiple

Disabilities, one of 7 national Institutes in India (Under MSJE)

AYJNIHH Ali Yavar Jung National Institute for the Hearing Impaired

NIVH National Institute for the Visually Impaired

NSDA National Skill Development Authority, GOI

NTA/NT Act National Trust Act

OT Occupational Therapist

PT Physiotherapist

PWD Persons with disabilities

RBSA Rashtriya Bal Swasthya Abhiyaan (National Child Health Program

Ministry of Health/GOI)

RMSA Rashtriya Madhyamik Shiksha Abhiyaan (National Secondary

Education Program— Ministry of Human Resource Development)

RTE Right To Education Act 2009, Amended in 2012

SQ Social Quotient

SI(I) Sense International (India)

SSA Sarva Shiksha Abhiyaan (Education for ALL Program at primary Level

Ministry of Human Resource Development)

TLM Teaching Learning Material

UNCRPD United Nations Convention on the Rights of Persons with Disabilities

UP Uttar Pradesh (the largest State in India)

VFM Value for Money

VI Visual Impairment

VT Vocational Training

VTC Vocational Training Center

WB West Bengal, a State in eastern India

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Basic information

Project title Expanding services for Deafblind people in India

GPAF number GPAF-IMP-009

Country India

Name of local partner(s) Sense International (India) – others listed below

Total project budget (1 figure) GBP 684,191

Total DFID budget (1 figure) GBP 478,934

Report author Aloka Guha

Supporting team Uttam Kumar (SII team)

Brahada Shankar (SII team)

All Project Coordinators of SLCs and the teams

RLC team, plus Dr. Bhushan Punani

Evaluation date 2nd – 22nd February 2014

Name of local partner(s):

1. Sense International (India), Gujarat (national coverage)

2. Blind People’s Association, Gujarat (RLC West region)

3. Digdarshika Institute of Rehabilitation & Research, Bhopal (SLC- Madhya Pradesh)

4. Caritas-Goa (SLC-Goa)

5. National Association for the Blind, Nasik (SLC- Maharashtra)

6. Holy Cross Service Society, Tamil Nadu (RLC South region)

7. Kottayam Social Service Society, Kottayam (SLC-Kerala)

8. Uma Manovikas Kendram, Kakinada (SLC- Andhra Pradesh)

9. National Association for the Blind, Bangalore (SLC- Karnataka)

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Executive Summary

Introduction

This mid-term evaluation relates to the project entitled “Expanding Services for

Deafblind People in India”, funded by Department for International Development (DFID)

Global Poverty Action Fund (GPAF) Impact Fund.The GPAF is a demand-led fund

supporting projects focused on poverty reduction and pursuit of the Millennium

Development Goals (MDGs) through tangible changes to poor people’s lives including

through, service delivery, empowerment and accountability, work on conflict, security

and justice.

The project is managed by Sense International (SI)1 with Sense International (India)

(SII)2 and 8 other local partners in India.3 SI is an international non-governmental

organization working in partnership with local organisations for deaf blind people and

their families.

Deafblindness is a combination of vision and hearing impairments. It is also described

as multi-sensory impairment (MSI). Some people are completely deaf and blind, but

many have a little sight and / or hearing they can use. Some may have other physical

and learning disabilities to cope with.

Purpose

The purpose of the mid-term evaluation, as per the Terms of Reference, was to:-

Identify the impact of the project at the mid-term and make recommendations for the second half of the project.

Account to local stakeholders and funders for the project’s achievements/results against the stated purpose and outputs.

Record and share lessons that will assist in improving UK support to civil society.

Assess whether the project is representing value for money in its efforts to deliver results.

1 Sense International http://www.senseinternational.org.uk/

2 Sense International (India) http://www.senseintindia.org/

3 Blind People's Association, Gujarat (RLC West); Digdarshika Institute of Rehabilitation & Research,

Bhopal (SLC Madhya Pradesh); Caritas, Goa (SLC Goa); National Association for the Blind, Nasik (SLC

Maharashtra); Holy Cross Service Society, Tamil Nadu (RLC South); Kottayam Social Service Society,

Kottayam (SLC Kerala); Uma Manovikas Kendram, Kakinada (SLC Andhra Pradesh); National

Association for the Blind, Bangalore (SLC Karnataka).

http://www.senseinternational.org.uk/

http://www.senseintindia.org/

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Methodology Five out of eight project sites were visited (four State Learning Centres in Karnataka,

Kerala, Goa and Maharashtra and one Regional Learning Centre in Ahmedabad,

between 2nd February and 22nd February 2014. At the end, one whole day was spent

with the entire Sense International (India) team, at their office.

In addition, the Evaluator attended the 3-day National Conference of Sense

International (India) from 15th-17th January 2014, in New Delhi, where large numbers of

Project partners, adult deafblind persons and their families, participated very actively.

Many of them presented papers on their innovative strategies and practices. This

Conference provided ample opportunity for the Consultant to familiarize herself with

each partners’ work, and hold discussions with them.

Findings

Under Impact and Overall results (section 1), it was observed that everywhere, the

parents/stakeholders felt overwhelmingly grateful for the opportunity to see their

children transformed from low-functioning individuals to functioning individuals capable

of communication as well as contribution. In year two, all six SLCs were supported by

RLCs through visits and exposure visits. Capacities of two RLCs were strengthened and

six SLCs were established to deliver early intervention, education and vocational

training services for deafblind people.

State level networks of deafblind people, their families & teachers were very

successfully established, representing the estimated 484,000 deafblind people in India

in advocacy & policy influence. In each of the first two years 2 regional, 1 national and 8

local meetings were held.

The biggest gains have been in the area of inclusion in government schools. Each year

8 state SSA missions (10 officials/ 30 teachers per SSA) were trained by project staff.

Deafblind children (age 6-14) have received quality education through this project. By

the end of March 2014 (end of Year 2), in education under the 6-14 years age group

318 deafblind boys and girls (196 male, 122 female) had been reached directly by all 8

project partners. The indirect reach via the Education for All (SSA) schools is expected

to be 6,263 (3,717 male, 2,546 female). This shows that the project team’s training of

SSA staff has paid rich dividends. (16 on-site training by SII staff; 12 mentoring visits

and 12 visits to SLCs by RLC staff, in each of the first two years.

Programs in Early intervention (EI) have been established to screen newborns and

infants in 8 hospitals and have provided services for 166 deafblind children (0-6 yrs) by

end of March 2014. Newborn screening was initiated in EI in hospitals in Gujarat, Tamil

nadu, Maharashtra and Kerala (4 in year 1) and 2 in year 2 as in Madhya Pradesh and

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Andhra Pradesh, with a total of 2,536 babies screened. 122 deafblind young adults (14+

yrs), 30 males and 5 females, have received vocational training, with 40 generating

income of their own. This is no mean achievement in India, where even the mildly

disabled persons find themselves unemployed, and the overall picture of unemployment

is a serious concern.

Conclusion

In conclusion, it may be said that this is an innovative and exciting project reaching out

to a hitherto-unreached group, which, by definition, is an activity worth undertaking, for

the simple but sufficient reason that people who were earlier left out, are now being

brought into the mainstream disability grid.

It is also appreciated that this project has a comprehensive approach to the issue, which

is a horizontal one rather than a vertical one. At each step of the project there is an

attempt to dovetail into the existing Government services, rather than to set up a

standalone (vertical) project which is not only unsustainable but also very expensive to

replicate elsewhere, especially for low-resourced settings like India. As it stands, the

project is both replicable and scalable.

The word comprehensive is used here to refer to a continuum of efforts, starting with

awareness and advocacy, followed by early identification and intervention, school and

vocational education, leading to economic empowerment. A tactical strategy of

empowering parents has paid rich dividends in that they have become a reliable source

of multi-layered support.

The numbers reached and served, are documented in sync with the targets set (and

efficiently monitored), but the important issues are not the numbers, but the approaches

and strategies used to roll-out this project on expansion of services for a hitherto little-

known group. This includes:

i. the selection of credible partners with local influence

ii. piggy-backing on their experience/goodwill/expertise

iii. building of strong networks within each of the States through partners

iv. transitioning seamlessly from Regional Centers to State Centers

v. capacity-building on felt and perceived needs, directly from SI India experts

vi. dovetailing with established Government services, wherever feasible

vii. empowering parents

viii. developing role models of DB adults and showcasing them effectively

ix. simultaneously, pressurizing the GOI to include DB in policies, laws, programs

and in data-collection

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x. Developing and helping to run professional training courses on DB, in order to

ensure regular availability of trained professionals from across the country.

These 10 strategies are the main gains of this project. They are both replicable and

scalable.

A seamless transition from region-specific interventions to a state-specific one has

meant that more direct services are reaching out to the target groups and that

stakeholders are giving direct feedback at local levels which helps to inform and guide

the next level of interventions. This is affirmative action which is global in approach but

local in application.

This project is running efficiently, effectively, is extremely relevant, very strictly

monitored and is 98% sustainable. The 2% in question relates to the NAB Karnataka’s

interest and ability to sustain services. As far as value for money is concerned, the

strategies outlined above, are proving to be both cost-effective and reach-effective.

There is no evidence of any wastage/expensive usage of project funds. This was

checked frequently and found to be true of project staff as well as of SI(I) team.

Having said all of that, it must also be mentioned that there are a few areas, minor

areas admittedly, that are discussed under the section on recommendations. These

include the need to focus on 1) capacity-building on associated disorders like cerebral

palsy, autism and hyperactive disorders.2) While Si –I has excellent networking skills,

the partners need some more reaching out to government sectors of health and

education at the local level.3) Considering the pioneering nature, the scale and high

quality of services, it may be turned into a Research paper.4) At the local level, more

media engagement would be useful .5) The networks provide a good opportunity for

more rights-based empowerment.6)Vocational training ,as a valuable and needs-based

component of the Project, has shown good results, may need to be strengthened now

that there is more understanding of abilities as they relate to occupations. Finally, it

would be very worthwhile to see if this same project can be replicated in Eastern and

North Eastern India.

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1) Report Findings Impact and Overall Results

What is the project’s overall impact in relation to its outcome and how does this

compare with what was expected?

The impact is favorably comparable with the expected outcomes. Everywhere, the parents/stakeholders felt overwhelmingly grateful for the opportunity to see their children transformed from low-functioning individuals to functioning individuals capable of communication as well as contribution.

What are the key results against the outputs and how did this compare with the targets

set in the original logical framework?

OUTPUT 1 ACTIVITY 1.1 Year 1 Year 2

Capacity of two RLCs strengthened and six SLCs established to deliver early intervention, education and vocational training services for deafblind people.

Awareness visits and training for partners (Awareness visits for all SLCs every year to RLCs or to the organisation from where their mentors comes)

All 6 SLCs were supported by RLCs through visits and exposure visits

All 6 SLCs were supported by RLCs through visits and exposure visits

ACTIVITY 1.2 Year 1 Year 2

Regional & national deafblindness (DB) & project management (PMT) trainings. (8 Regional training by RLCs (4 each),

Deafblindness: Regional – 4 National – 3 Capacity Building Regional – 2 National – 1

Deafblindness: Regional – 4 National – 3 Capacity Building Regional – 2 National – 1


Early intervention (EI) established to screen newborns and infants in 8 hospitals and provide services for 250 deafblind children (0-6 yrs)

Initiate EI in hospitals. 4 in year 1 (Gujarat, Tamil nadu, Maharashtra and Kerala

2 in year 2 (Madhya Pradesh and Andhra Pradesh)


Train medical/para-medical (M/PM) staff. 6 trainings 6 trainings


Deafblind children (age 6-14) receive quality education. (625 directly and 9,000 via SSA)

Train partner staff to provide education 16 on-site training by SII staff; 12 mentoring visits and 12 visits to SLCs by RLC staff.

16 on-site training by SII staff; 12 mentoring visits and 12 visits to SLCs by RLC staff.


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Provide deafblind children education services directly.

8 partners working

8 partners working


Train 8 state SSA missions (10 officials/ 30 teachers per SSA).

3 state SSA sensitised

2 state SSA sensitised


Partner with state SSA missions to provide deafblind children with education.

No partnership, but meetings held

no partnership, but meetings held


125 deafblind young adults (14+ yrs.) receive vocational training, with 40 generating income.

Needs based vocational training for income generating activities (IGA).

4 organisations (Gujarat, Maharashtra, Tamil nadu and Andhra Pradesh)

4 organisations (Gujarat, Maharashtra, Tamil nadu and Andhra Pradesh)


State level networks of deafblind people, their families & teachers established, representing 484,000 deafblind people in India in advocacy & policy influence.

Promote networks to advocate for the rights of deafblind people.

2 Regional, 1 national and 8 local meetings held

2 Regional, 1 national and 8 local meetings held


Advocacy planning and information dissemination.

Meetings with MHRD, MSJE including RCI and NT, state level meetings

Meetings with MHRD, MSJE including RCI and NT, state level meetings

How effective is the project’s overall strategy?

Very effective in terms of reach, the transitioned from Regional Level Centers (serving 5-6 neighboring States surrounding their own headquarters),directly to State Level Centers, has cut down on travelling for parents and provides greater access for stakeholders in each of the State-level centers

Effective also in terms of quality, because many deafblind persons are getting direct services now, reaching out to the whole State directly, with qualified professionals.

Also evidenced, is the excitement of addressing a ‘new’ disability, as seen in Goa Caritas. (They already serve many other disabilities, have a regular and special school of their own, plus residential facilities)

In Kottayam Social Service Center (which is owned by Caritas) and NAB Karnataka (where many management concerns exist), the joy of being able to help all those persons who have been rejected by other institutions (who cater only for the hearing impaired or for visually impaired), is unbounded

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Almost all partners have incorporated persons with Deafblindness into the entire spectrum of their existing social-cultural programs

In KSSC-Kottayam, an elderly person with Deafblindness was asked to participate in their annual fish-curry making contest. He won the first prize this year.

All the SLCs are getting their capacities built/strengthened directly by SI(I) experts

If relevant, in what ways does the project: i) improve global/regional/national/local

policy; ii) and/or strengthen legislation and enforcement mechanisms to protect and

empower disadvantaged target groups; iii) and/or raise awareness amongst civil society

and service deliverers about rights. Provide examples

Inclusion of deafblindness as a discrete disability, in the New Bill on Disability, is entirely due to the very active participation of Akhil Paul, Director Sense International (India), over a period of 2 years-- creating awareness throughout India on the rights of persons with deafblindness. It’s been a huge effort.

Several national and regional consultations and 3 National Conferences, have instilled confidence, commitment and renewed energy to walk further on this journey of deafblindness in India, among persons with deafblindness, their parents and professionals

If relevant, in what ways does the project improve practice by providing greater access to quality services for disadvantaged groups? Provide examples.

When CBM/UN collected data this year on disability, SI(I) ensured the inclusion of persons with deafblindness, as a separate category

The new Kerala State Initiative on Disability (KSID), was influenced by this Project to include DB as a separate disability with its own very unique needs and challenges; KSID plans for the establishment of district-wise early intervention centers, and Rubella Immunization for the entire state.

There will be many other positive unintended consequences from this.

In both Goa and in Kottayam, there are orphanages where project staff visit regularly, provide direct services, and also train the nuns who run the orphanages on activities of daily living, communication skills and so on. This has greatly improved practice by providing greater access to direct quality services from qualified professionals. Sneha, on the cover page, is from the orphanage in Kottayam, and her improvement curve, within a short space of time, is amazingly good.

The 3 policies introduced during this project for staff awareness and compliance are: the Child and Vulnerable Adult Policy, The Anti-bribery Policy and the Whistleblowers Protection Policy. These are all excellent safeguarding policies for stakeholders/beneficiaries.

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2) Key Evaluation Criteria and Value for money (VfM)

Relevance To what extent is the project supporting achievements towards the MDGs, specifically

off-track MDGs?

The off-track MDGs 1, 2 and 4, (regarding poverty, child mortality and health, and education) are being addressed, though not uniformly. Poverty and education appear to be doing better. The child mortality and health issue needs greater attention, and is included within recommendations.

I might add that India (public and private sectors) is not overly involved in the implementation of the MDGs, in general.

To what extent is the project targeting, reaching and benefiting the poor and

marginalized?

This project’s target group is almost entirely the poor and the marginalized since persons with disabilities are over-represented in the poverty group, especially in low and middle income countries (LMIC) like India. This was evidenced through checking of the beneficiaries’ BPL (below poverty line) cards, issued by the government during the evaluation. The majority of the beneficiaries had them.

As seen in all projects, large proportions of the target group had Cerebral Palsy CP and Intellectual Disabilities ID as additional disabilities, most evident in babies delivered at home, among very poor and very illiterate families from non-urban areas.

Every child, whose file was available, was checked and found to have shown improvement, in the domain of social skills, if nothing else. This has been verified after scrutinizing the Individual Education Plans, IEPs as well as from interviews with individual parents. Behavioral changes have helped parents in home management and in reducing some of the isolation that they have been facing. In Indian societies, these are major gains.

To what extent is the project mainstreaming gender equality and equity (men, women,

girls and boys) in the design and delivery of activities (and/or other relevant excluded

groups)?

There does not appear to be any discrimination between genders, in any of the projects. The database shows that more girls than boys are receiving services. Over the years, especially as an outcome of earlier projects by SI(I), the creation of awareness regarding disability and gender equity has been very penetrative, even in rural areas.

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In the 3rd National Conference, the presence of fathers was noticed; on enquiry, it was understood that presentations from fathers were encouraged and accepted without scrutiny or denial.

In a parents’ meeting in NAB-Nasik (as part of the mid-term evaluation), during office hours on a weekday, there were 38 parents present and fathers outnumbered mothers. This is pretty unusual in India, where looking after children is very much a mother’s accepted duty /role, especially for disabled children.

How is the project ensuring activities respond to the needs of target beneficiaries?

When it was found that NAB-K needed more attention in management matters as

well as in technical ones, this was provided.

When it was found that partners’ understanding of the seriousness of fundraising

was below expectations, this too was provided. (Goa)

When the staff found that parents did not understand the complexity of DB, they

spent many hours training parents, and getting adult DB persons to talk to them.

(Caritas -Kerala). This was very effective

When SLCs in Goa and Kerala, found 2 DB children in orphanages, they also

trained the Sisters there who help the children in ADL activities.

Several children with serious health issues were helped by Project staff to apply for

a national level health insurance scheme (Niramaya of NT) and parents are now

getting regular reimbursements for doctors’ fees, medicines etc. This has helped to

create stronger bonds/faith between parents and project staff.

To what extent and how is the project affecting people in ways that were not originally

intended?

The unintended consequences and benefits are many, some of which are listed below:-

The Government of India’s flagship program to realize Education for All, SSA, now

recognizes DB as a separate category, nationally and in all the States, they made

the data available to SI(I).

Fr. Michael of SLC-Kerala happens to be the President of the NGO group in the

district and he is creating many worthwhile linkages on behalf of DB, mobilizing

church-going youths to provide voluntary services to persons with DB.

The KSID includes DB now, with its unique needs; this will have many spin-offs of its

own, in terms of inclusion into health, education and rehabilitation programs.

The entire Diocese in Goa and in Kerala is spreading the word about DB because

the Archbishop is the Chairman of the Board of Caritas, in each of these

organizations (both Caritas).

In the general B.Ed course in Maharashtra, DB is now included because of this

project in Nasik; this is a very positive unintended consequence. (Many, many

projects have tried this in the past, but failed.),This effort to modify basic teacher

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training programs goes back at least 25 years, I can personally endorse that,

because I have tried to do this in Chennai, Delhi and in Mumbai, through NGOs and

through related Government agencies. (A similar effort is the one to change the

basic MBBS course to add disability in it, unsuccessfully, I might add). As mentioned

earlier, there is a wave of reforms in public thinking now, where concrete efforts to

INCLUDE the excluded, is met with gradually increasing success from the

government side.

There will be many more regular teachers now trained in DB, at the pre-service

stage, who will not look at Inclusive Education as an addition to their role but as part

of their regular duties.

Many of the parents were guided by project staff to apply for and receive Legal

Guardianships from the National Trust, as were 4 orphans.

In all the projects visited, Aids and Appliances are being sought free of cost, through

convergence with SSA.

RLC Ahmedabad has arranged for free Kits (containing teaching learning materials,

toys and games) for each DB child, from the National Institute for the Empowerment

of persons with Multiple Disabilities, NIEPMD. Now, the other centers are should get

the same, for each of their children.

Effectiveness To what extent is the project delivering activities that are value for money with regards

to their economy and efficiency?

To a great extent, because each partner is contributing land/building, existing

infrastructure/related expertise/credibility/ goodwill/network/leverages with

governments and many other benefits

With the exception of SLC-Karnataka, all the partners were found to be very

efficiently saving money by using what they already have, perhaps in a modified

format. Some of the materials (including formats) developed as an outcome of

earlier projects, have been very effectively translated into local languages. Many of

the existing activities of partners, such as sport, cultural activities, teaching learning

materials, vocational activities like paper plate making ,career–building (like the

Masseur Training course in BPA), were originally intended for those with other

disabilities but have been appropriately modified/adapted to facilitate inclusion of

persons who are deafblind.

The salaries are not high, everyone is using public transport (in Goa, there is only a

private bus services, which is very erratic and infrequent causing time wastage)

Several partners have provided transport for picking up and dropping the children to

their homes, because transport is a major issue when you have to carry a teenage

child with multiple disabilities.

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To what extent is the project using evidence to improve programming?

The first evidence of improvement in the child is what motivates parents to continue

with services. Staff are using this insight to showcase others’ achievements, so that

parents from economically-challenged backgrounds can be motivated to leave their

chores/work and carry their DB child to a center several times a week.

Evidence from some partners is also inspiring others to improve programming.

The 3rd National Conference provided enormous opportunities for evidence-based

learning to take place, for staff, parents and the beneficiaries themselves. Now,

everyone sees Zameer as a role model (Zameer is a deaf blind adult, a father of a 3

year old girl, who is employed by SI India as an Advocacy Officer. Zameer’s

communication skills, his grasp of subjects and his confidence, surprise and impress

everyone who comes in contact with him).

Many parents were found to be beating their children, this was stopped only when

the children were responding to the interventions and displayed clear signs of

improvement

What are the key drivers and barriers affecting delivery of results for the project?

Barriers

Source: Census 2011

In Seeing In Hearing In SpeechIn

MovementMental

RetardationMentalIllness

MultipleDisability

Any Other

Persons 18.8 18.9 7.5 20.3 5.6 2.7 7.9 18.4

0

5

10

15

20

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DISABILITY WISE PROPORTION –

CENSUS 2011

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Disabled persons constitute 2.21% - 2.68 crores

The major barrier for any disability work in India is the lack of reliable data. As you can

see from the figure above based on 2011 Census data, India is showing a prevalence of

only 2.21 % whereas Australia shows 20%, the World Report on Disability 2011 (WHO

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and World Bank) talks of 15% and neighboring Bangladesh reports 9.07 % in a HIE

Survey 2010.

Other barriers are:-

Huge turn-over of staff is a challenge to continuity.

Lack of highly qualified therapists (Speech, PT, OT), at affordable prices.

Drop-outs, because of death, migration or parents’ transfers, are barriers.

In NAB-Karnataka, there seems to be a disconnect between the management and

team, as well as within the senior management.

Drivers:-

SI(I) team

Parents expectations

Growing Stakeholder aspirations

Project staff

To what extent do the activities, services and results being delivered by the project align

with the intended objectives of GPAF?

Completely in alignment with the intended objectives and actually gone beyond them.

Efficiency To what extent is the grantee delivering activities on time and on budget against agreed

plans?

To a very large extent. There is some under-spending on assessments in Goa,

which is being addressed. Some variations are there because cost of living differs

between states.

The SI(I)team is very consistent and dedicated in their follow-up and monitoring

The project is very efficiently run; I say that with confidence based on my own huge

experience in running NGO projects in India. I have personally checked files,

registers, reports and email chains.

To what extent and in what ways is the project achieving good value for money?

The project is achieving very good value for money, because partners are accessing

government sources for additional benefits (SSA and National Trust etc.), wherever

and whenever feasible.

All partners are using their existing infrastructure to facilitate service delivery of this

project, over and beyond the funds made available as seen in Nasik and Kottayam

where transport is provided free of cost to facilitate continuity in interventions.

20

In Gujarat, for the very first time in India, the ICDS Director (Integrated child

development scheme) was persuaded by the BPA team to utilize from its own funds,

and amount of Rs. 2000 per child with disability per year. The Director was

sensitized appropriately, and he agreed. The result was that he organized training

for identification and simple intervention. The workers were then able to identify

children, help them to get disability certificates and other entitlements. The Director

ensured the payment for “Niramaya” health insurance policy for all children

identified. All children also received NIEPMD, TLM Kit an excellent kit given free of

charge from the government.

Are resources being used efficiently to optimize the results achieved compared to the

required level of inputs?

Sustainability To what extent is the project leveraging additional resources (financial and in-kind) from

other sources?

Parents in Nasik are helping to raise funds.

Staff in Goa are using innovative methods for raising funds (football game).

Caritas-Kottayam, BPA-Ahmedabad and NAB-Nasik are large and financially sound

organizations, leveraging a lot of internal resources from other projects.

Ministries of Education and Social Welfare are helping in a myriad ways in all the

SLCs and the one RLC visited.

Many doctors and psychologists are donating their time for free check-

ups/assessments.

To what extent is the project engaging with others to ensure their interventions

complement existing activities or leading to replication of approaches elsewhere?

The 3 Networks are also leveraging their collective clout to lobby with governments,

local, State and national

Each SLC partner and the RLC, have their own linkages with different departments,

where trainee-teachers and therapists are interning with them to provide extra

support and spread the word

An exemplar is included from Goa Caritas which lists their experts and partners.

To what extent are the benefits being realized by civil society groups supported by the

project sustainable?

With the exception of NAB-K, all the projects will be sustained, perhaps not in its

present intense form, but BPA, Kottayam, Goa, and Nasik have track records of

continuity of services even after withdrawal of funds.

21

Fr. Michael of Kottayam said to me, very clearly, “We look at every Project with a

Program approach”. I am convinced that he was referring to sustainability.

What is or can be done to ensure the sustainability of the project results? This includes

the sustainability of poverty reduction outcomes and, where appropriate, the

continuation of services developed during the project period.

Please see the recommendations section for additional information

All partners have unconditional praise for the SI(I) team

Fr. Maverick in Goa said specifically that “Sense is the best partner that

we have ever had. They are like family to us. We can call them on a 24x7 basis, and

they are always very supportive”.

With that background, I feel that the SLCs (other than NAB-Karnataka) need another

2 years before they can be weaned off, and after that, minimal handholding will

ensure sustainability of all SLCs except perhaps Karnataka.

RLC in Ahmedabad (BPA), is on a higher, different plane altogether. They are

recognized as the largest NGO in Asia, and they are capable of sustaining at the

present level, and beyond. Most of the comments made earlier, regarding projects,

do not apply to them. I am scanning the cover pages of some of their publications

which demonstrate their level of competencies and understanding of important

issues. It is only when you have mastered your subject thoroughly, that you can then

simplify and present it to others. Their EI as well as their VT work is more advanced

and effective than that of the SLCs. Their hospital-based work is very good and

capable of moving into 2nd generation early intervention activities. The goodwill they

enjoy in the large multi-specialty Government Hospital visited during this evaluation

is evidence of the dedication that they bring to their work. The Coordinator Vimal

Thawani and her full team are to be specially appreciated.

For that matter, all the others also deserve loud cheers for the commitment, hard

work and tremendous devotion they have to the children they work with. Working

with children who are not only severely disabled, but also have very complicated

systems of communication, is very difficult work, and cannot be done without The

project teams and Coordinators in Kerala, Goa, and Nasik deserve a lot of praise,

and even the Bangalore team is very good, except for the lack of leadership and

direction from a good Coordinator.

Impacts To what extent has the project put in place M&E systems that are fit for purpose and are

being used to support the delivery of activities?

The existing M&E system of Mentoring, Reporting, Meetings etc is doing well

22

SLCs in Goa, Nasik and Kerala will benefit from more mentoring (for speech, PT/OT)

and Karnataka needs additional support.

Quarterly reports, planned on-site visits by both technical as well as finance persons

from Sense, on every alternate month, on-site visits

Some visits and meetings are need-based, as expressed by partners

To what extent has the project built the capacity of civil society?

Every partner has been reaching out to civil society within their districts and their

States. A sample from Goa is included later; lack of space prevents me from

including lists from others.

Media coverage for this DB project is uniformly excellent.

S.N Date of

Training

Theme of Training Nature of

Participants

Total

numbe

r of

partici

pants

Trainers

1 10th –14th

December,

2012

Training on

deafblindness

Special

Educators of

State Learning

Centres

11 Technical

Team of Sense

International

(India)

2 8th–10th

January, 2013

Training on

Communication

assessment of

deafblind people

Special

educators of

partner

programmes

of Sense

International

(India)

28 Ms. Sampada

Shevde,

Director

Perkins Voice

and Vision,

India

3 26-27th

February 2013

Training on

Legislation and

guidance, Service

and rights

Senior

Practioners,

Mentors and

Sense India

team

38 Dr. Bhushan

Punani,

Executive

Director, Blind

People’s

Association

and Mr. Akhil

Paul, Director

Sense

International (

23

India)

4 21-23rd June,

2013

Training on

‘Approaches to

assessing the

functional vision

and hearing of

young children with

deafblindness

Special

Educators of

SLCs and

RLC South

16 Ms. Deiva

Jayaram,

Vision

Consultant,

Frontline

Hospital,

Chennai

Faculties of

National

Institute for

Speech and

Hearing

Impaired,

Trivandrum,

Kerala

4 1st – 3rd

August 2013

National Training

on Communication

Assessment for

deafblind people

Senior

Professional,

Mentors,

Sense India

team

38 International

Faculties - Dr.

Paul Hart,

Sense Scotland

and Ms. Liz

Duncan, Sense

UK

How many people are receiving support from the project that otherwise would not have

received support? How many of these people are unintended beneficiaries?

Overall, through its advocacy work the project can potentially benefit the

approximate 500,000 estimated deafblind people in India. In terms of beneficiaries

receiving support in this project, at the end of Year 2, 1,321 deafblind people are

receiving services directly (387 adult males 18+ and 616 adult females 18 years +,

196 child males under 18 years and 133 child females under 18 years). In addition,

over 6,000 deafblind people are benefiting from education in the Government

Education for All SSA schools (latest figures to be confirmed in June/July 2014

Government data).

None of the beneficiaries would have received services otherwise.

24

The unintended beneficiaries parents, and word of mouth is a powerful weapon as

word spreads quickly within small communities.

The unintended beneficiaries under this project are persons with other disabilities,

who are not deafblind. These persons are mainly with Cerebral Palsy, multiple

disabilities with communication limitations. These children are not direct

beneficiaries, but had to be included in services, as there are no other options for

those children. The project staff also referred some children to other organisations,

where ever alternate options were available.

25

3) Risk Management & Mitigation

Did the risks identified in the original proposal and annual reports materialize?

Risk identification in the original project was based on past experience earned by Sense

International (India). There was not much risks faced by project. At the partner level

also, not much risk was faced. However, in advocacy related work, our anticipation of

inclusion of deafblindness in central disability act could not succeed, due entirely to the

upcoming general elections. The rapid change in the political situation disappointed not

only deafblind persons and their families, but the whole disability sector. Sense

International (India) will continue to take up the issue with governments and civil

societies to ensure that deafblind persons are not deprived of all their human rights and

fundamental freedoms.

If so, how did the project deal with risk to minimalize negative impact on project results?

Though, one is not in position to do anything other than to wait for new government

formation, Sense International (India) has adopted the strategy to work with Department

of Disability Affairs under Ministry of Social Justice and Empowerment, to make sure

that deafblindness is included in all the government’s policies and schemes on disability

issues.

This evaluator is privy to the fact that the present set of bureaucrats (Secretary, JS)

think very highly of the SI(I) Director and his team, and consult with them on many

issues over and above DB.

26

4) Project Accountability to Stakeholders How has the project collected feedback from beneficiaries and how has this been used

to influence project decisions on implementation?

Feedback is routinely taken from parents, project partners, teachers/therapists and

used to influence implementation. For example:

o The IEP is filled up with parents jointly.

o Teachers take inputs on home management from parents

o Staff meet parents groups regularly

o Decisions on visit-dates, frequency of visits, social and cultural events,

doctors-visits, visits for SQ tests are all influenced by parents feedback about

their availability

o Several mothers are expecting another baby—staff are seen to then increase

the number of home-visits , so that pregnant women do not have to carry their

disabled child to the therapy center

o In Kerala, large numbers of children from Muslim families were seen at the

centers. Staff are seen to make special provisions for prayer times, home

visits by female staff for girl children, and so on.

A great deal of flexibility was evidenced, which is necessary for a multicultural,

economically-multilayered society like India.

27

5) Lessons

Innovation: Describe any project innovations which have the potential for scaling-up or replication

by Sense International or other organisations.

DB had a separate stall in a National Level Exhibition on disability in Delhi.

The Aids & Appliances scheme of GOI now has Packmate on its list, influenced by

SI(I). For many years now, the Ministry of Social Justice and Empowerment, has had

a scheme for distribution of appropriate appliances for persons with visual

impairment (white cane), hearing aids for those who have hearing impairments,

crutches/calipers and other orthotics for those who are mobility-impaired, etc.

Because of this project, the SI(I) team has persuaded the government to now,

include assistive devices for those with DB, like Packmates, which help them to

communicate better with others.

The National Institute of Persons with Multiple Disability (NIEPMD) now has started

DB services.

NIEPMD has Akhil Paul, Director SI(I) on many of its Committees and in the

Interview Panel for new staff.

NIEPMD also has started distributing boxes with material for DB specifically, again,

influenced by SI(I). This is being distributed free of cost.

A 2-day module on DB has been included in the SSA Teachers Training program,

for general school teachers as well as for Resource Teachers.

The INDIRA GANDHI National Open University has a module now on DB as part of

its distance learning course for teachers.

The regular B.Ed course in Maharashtra will now have a component on DB plus

other disabilities) because of the relentless efforts on Advocacy from SI(I) team and

SLC teams in Nasik.

Equity and Gender What are the key lessons learned from the project’s approach to reducing inequalities

between men, women, girls and boys or other relevant aspects of diversity?

No lessons needed to be learnt as there was no discrimination. This is the result of

tremendous efforts by the teams to drive in the concept of gender equity, from day 1,

in all of their awareness and advocacy programs. The Networks also spread this

message and empowered adult deafblind girls, seen and heard at the Network

meetings, and at the National Conference, further enhances the impact. Word of

mouth among the mothers groups has also helped.

28

As mentioned earlier, there were more girls than boys on the beneficiary list

Capacity building Describe key lessons learned in relation to capacity-building of partners, community

groups etc.

There were obviously inter-project variations in capacity-building needs of partners,

even between the SLCs, depending on their history of disability work in general and

their DB work in particular.

A major lesson is the need to expand the base of Mentors, covering

o A Region-wide roster of experts.

o Non-DB experts who can address CP, MR, Speech-related disorders.

Greater role-clarity between RLCs and SLCs vis a vis capacity-building.

Monitoring & Evaluation What tools and methods have been most useful and practical in measuring and

demonstrating evidence of project achievements?

Site visits.

Quarterly Reports.

Continuous and comprehensive communication by email, telephone, skype calls and

meetings.

Strong bonds created between SI(I) and the partners have created an atmosphere

where honesty forms the basis of all exchanges.

Approaches to Empowerment and Advocacy: What lessons have you identified in relation to factors that enhance approaches to

empowerment or advocacy processes?

Stakeholders’ collective voices are by far the most powerful change- maker.

Parents’ pressure comes second.

Regular, frequent media coverage, especially on events showcasing abilities.

Success stories, especially if the journey has been hard and long.

Use of social media and networking.

What lessons have you identified in addressing resistance against the empowerment of

marginalized groups?

29

The current wave of reforms (in public and private sectors), especially in a general

election year, include pro-poor approaches favorable for persons with disability who

are doubly disadvantaged because of their disability and because of poverty.

The upcoming general elections are a good time for those in power to be seen to be

inclusive of the marginalized.

The Right to Education 2009 and the Amendments to the same 2012 (which

included children with multiple disabilities) has been a harbinger of real change for

this group.

Currently, the resistance to empowerment of excluded groups is much less than

what it was even 5 years ago.

The revised Companies Act 2013 has made CSR mandatory, providing an

opportunity for greater linkages with NGOs.

Others lessons learned Please describe any other lessons learned from the implementation of this project that

you think may be useful for other partners, grant holders or DFID (e.g. policy level,

sector level, GPAF fund level, organization level – management, design and

implementation)?

Role clarity between RLCs and SLCs may need to be revisited, with well-defined

responsibilities of RLCs towards SLCs.

This will ensure less time spent on “developing” new strategies (more time on

learning from others), and more ownership from RLCs.

Year 3 could be a good time for another round of discussions on:-

o What constitutes second generation early interventions, possible catchment

areas, training in non-medical newborn screening in the Hospital premises

before mother is released after delivery and follow-up visits.

o What constitutes vocational training, kinds of trades DB persons can do.

Now that partners have become more competent in handling DB work, another

mapping exercise could possibly be undertaken at this point to reassess the viability

of moving to government hospitals, more SSA schools, local trades, local job

opportunities /expertise available and so on, on the lines of a participatory appraisal.

Applied learning How has the project used learning so far to improve delivery?

Feedback is routinely taken from parents, project partners, teachers/therapists and

used to influence implementation. For example:

o The IEP is completed jointly with parents.

o Teachers take inputs from parents on home management

30

o Staff meet parent’s groups regularly

o Decisions on visit-dates, frequency of visits, social and cultural events,

doctors-visits, SQ test visits are all influenced by parents feedback about their

availability and willingness

A great deal of flexibility was evidenced.

31

6) Conclusions

Summary of achievements against evaluation criteria

Inclusion of DB as a separate disability in laws, policies, local programs which has

long-term benefits/impact.

The 3rd National Conference in January 2014 with huge participation from

stakeholders was so impressive that the JS (Disability Division) Mr. Awasthi, actually

sat through the Valedictory session, which included a presentation on

recommendations by the audience, and made on-the–spot promises to provide most

of the facilities asked for by DB persons themselves. In 44 years of my work with the

Indian Government, I have never seen that happen.

The massive numbers included through the Education for All effort4:-

o 41,744 identified children with db

o 38,248 enrolled,

o 1,365 in school readiness program and

o 1,566 in home-based program

The realization among civil society, even among Doctors, that this is a group which

can LEARN, and DEVELOP unique competencies, is a huge achievement .This

means that other children with DB who will inevitably visit them in the future, will not

leave them with despair and negative prognosis.

Summary of achievements against rationale for GPAF funding

Education related

In the opinion of this evaluator, the education related gains have been the biggest, most

sustainable and the most path-breaking gains. That students with DB are being

identified, enrolled and retained in the government education system, that DB-specific

data is collected, and SI(I) included in the whole cycle of EFA (Education for All) is a

huge recognition and an even bigger achievement.

4 These numbers were presented by SSA in the 3

rd National Conference on Deafblindness in

Delhi but have not been verified.

32

SUPPORT FOR CWMD/ DB

14

Physical Access

Quality of Access

Social Access

• Assessment of CWMD for mapping of needs

• Educational Placement

• Aids and appliances• Removal of

architectural barriers

• Support services (including therapy)

• Teacher training• Resource support• Curricular access• Individualised

Educational Plan (IEP)

• Parental training and community mobilization

• Peer sensitization

33

Supporting statistics

Children with Special Needs identified: (under SSA) is 27.79 lakh (1.19%)

Enrolment is 23.64 lakh (85.08%)

Coverage of CWSN is 94.64%

Resource Teachers appointed: 16863

Home Based Education coverage: 1.93 lakh

No. of HBE Volunteers: 11856

Resource support:

o Surgical support provided: 55099 CWSN

o 2.97 lakh CWSN given therapeutic support,

o 1.26 lakh given transport support and

o 2.18 lakh CWSN given escorts

Teacher Training

o In-service orientation: 69.20% teachers oriented

o Special 3-day IE module: 52.74% teachers given a specific 3-day training on

IE.

o 90-day course: 3.63% teachers trained

IEP: 33.73%

Infrastructure:

o Ramps & handrails: 79.78% (11.42 lakh schools out of a total of 1431702

schools have been provided with Ramps & handrails)

o Friendly toilets: 14.82% (2.12 lakh schools)

Partnership with NGOs: 812

o Partnership with MHRD. SI(I) is part of the national expert group on IE/

CWSN constituted by MHRD

o Partner of SSA for Master Trainer’s training conducted in 2011 at the national

level. 292 MTs trained across all States. Out of 18 days,4 days were devoted

to DB & MD

o SI also member of State Resource Group in Andhra Pradesh, Chandigarh,

Chhattisgarh, Delhi, MP, Rajasthan, Jharkhand,

o SI partnership with SSA in 17 states for training of general teachers

o Sensitisation programme for SSA staff in WB, Rajasthan, Kerala, Haryana,

Gujarat

o Bachpan Centres in UP included deafblindness in their service provision

34

•

CATEGORY- WISE---SSA

42

VIHHOIMRCPMDLDAutism

Enrolled 5E+ 5E+ 5E+ 5E+75321E+ 2E+1838

0

100000

200000

300000

400000

500000

600000

VI HH OIMRCP

MDLDAutism

Identified6E+06E+05E+06E+01E+02E+02E+02741

0

100000

200000

300000

400000

500000

600000

700000

• The above table shows identification on the left side, and actual enrollment on

the right side.

• The above table clearly shows that those students with disabilities in government

schools who are being retained are the ones with visual (VI), hearing (HH),

orthopedic (OI) and intellectual disabilities (MR).Children with CP, (or cerebral

palsy), MD (multiple disabilities) and LD (learning disabilities) are not being

retained in the system because of the complexity of their problems; DB will come

under MD.

•

State DB CWSN

identified

DB

CWSN

Enrolled

in

Schools

DB CWSN

Enrolled in

School

Readiness

Programmes

(SRP)

DB CWSN

provided

Home

Based

Edu. (HBE)

A & N Islands 0 0 0 0

A.P. 178 48 0 41

Ar. Pradesh 16 0 0 16

Assam 45 20 0 21

Bihar 52 0 0 40

Chandigarh 0 0 0 0

Chhattisgarh 179 114 17 48

D & N Haveli 1 0 0 1

Daman & Diu 0 0 0 0

Delhi 0 0 0 0

Goa 16 2 0 9

Gujarat 1152 584 52 74

Haryana 7 0 0 7

HP 0 0 0 0

J&K 0 0 0 0

Jharkhand 2276 947 856 473

Karnataka 3306 3306 0 0

State DB CWSN

identified

DB

Enrolled

in

Schools

DB

CWSN

Enrolled

SRP

DB

CWSN

provid

ed HBE

Kerala 191 156 15 20

Lakshadweep 0 0 0 0

MP 32981 32335 0 646

Maharashtra 13 13 0 0

Manipur 47 0 0 47

Meghalaya 3 0 0 3

Mizoram 0 0 0 0

Nagaland 2 0 0 2

Odisha 25 23 0 2

Puducherry 32 30 0 2

Punjab 222 140 35 32

Rajasthan 26 17 0 9

Sikkim 0 0 0 0

TN 31 12 3 16

Tripura 0 0 0 0

Uttrakhand 2 0 1 1

UP 0 0 0 0

West Bengal 941 499 386 56

Total 41744 38246 1365 1566

STATUS OF DEAFBLIND CHILDREN IN SSA

20

The above table is a list of children with db, specifically, and not just Multiple

Disabilities, who have been identified in the SSA program. Some of them, are in

35

schools, some in Resource Rooms and the rest are receiving services through

home-based education. This is Sense I’s biggest achievement through this

project. It is no mean achievement.

INCLUSION OF YOGESHSWARI JAMBLE

In the context of CWSN we hear and say many times “see theirabilities not their disabilities”. This thought comes true when wemeet Yogeshwari a 10 year girl with deaf blindness. Studying in classIVth of Zilla Parishad, Girls Primary School, Bardapur, TalukaAmbajogai in district Beed. In the year of 2011 during the summervacation household survey for the purpose of identification of CWSN,Yogeshwari was identified. Then with the help of special educatorYogeshwari was assessed. After the assessment individualizededucational plan developed for Yogeshwari as per her need andcurrent level. The special educator began by giving home basededucation to the Yogeshwari. Here yogeshwari was preparing for preinclusive skills, orientation and mobility skills, ADL, etc. After 8months of home based education now Yogeshwari was ready to keepher feet and face the society. At the place of Taluka Patoda under theInclusive Education programme, 3 month school readinessprogramme was given to Yogeshwari. Here Yogeshwari learnt skillsthat are needed in the regular classroom and school. As Yogeshwariachieved independence in her day to day life, her supports graduallydecreased. Now Yogeshwari goes to the regular school and sits there2 to 3 hours daily.

The successful inclusion of Yogeshwari has increased acceptance levelSMC & community members. Teachers have started to believe thatevery special child can be mainstreamed and all children have a rightto enjoy and learn. Parents feel highly encouraged and motivated.This case study has helped to break the attitudinal barriers. 34

Summary of problems and issues encountered.

All the difficulties that are normally associated with the introduction of a new subject,

STEPS TO BE TAKEN FOR INCLUSION OF CWMD/ DB

• School strengthening• Provide resource materials, information, equipment, counseling,

etc.• Sensitize peers, teaching and non teaching staff towards MD &

deafblindness• Strengthen teacher training on teaching of CWMD and DB• Provide support services to deafblind students for academic as

well as co-curricular areas• Collaboration with NGO’s / special schools• Braille and large print books and learning materials• Provide all types of access, equal opportunities, encourage

participation of deafblind students in academic and nonacademic areas.

• Provide interpreters cum guide to deafblind students andfinancial assistance to hire such services.

• Mass awareness on a large scale. 32

36

Lack of awareness, even among doctors, thereby wasting many precious primary

/critical years

—Management issues within partners: NAB-Karnataka is a case in point where the

management appear to be at loggerheads with each other

Difficult to terminate funding, even when based on mismanagement, as seen in

NAB-Karnataka, because ultimately everyone has to be on board, perhaps a clause

can be built into the next project on mid-term closure based on management

difficulties.

Overall impact and value for money of GPAF funded

activities. Pioneering work in introducing a ‘NEW’ disability.

Brought hope to many who were neglected, even by their own families at home.

Parents’ strengths/support is visible.

Media, civil society support is visible too.

SI (I) has earned enormous goodwill.

Earlier projects carry-over benefits are being utilized.

Choice of strategy (piggy-backing) is good value for money.

Combined goodwill of two organizations— Local partner and National (as in Sense

International India) --is multidimensional in impact, in terms of reach,

policies/schemes, and technical expertise/ skills.

The young and energetic team is very hard-working.

37

7) Recommendations for the future

Please specify at least 5 key recommendations, including recommendations for the

short-term (i.e. before the end of the project), medium-term (i.e. for a next phase

project) and long-term (i.e. longer-term strategy).

A point needs to be made before I begin the section on recommendations. The fact is that there is a lot of high quality work already going on in the RLCs and also the SLCs. They have defined and refined services to deafblind children beyond and above the expectations of all of the parents.

Each SLC partner has its own unique strengths, locally and organizationally contextualised adaptations, derived from experience as well as from the goodwill earned over the years, and the inherent benefits of networking.

The SI(I) team needs to be congratulated for the strategies adopted, of collaborating with local NGOs with excellent track records, and getting the best value for every pound spent on this project. The land/building comes free, the goodwill comes free, the networks and the publicity come free, as does the credentials. In almost all of the SLCs, the sustainably has been guaranteed, by the simple strategy chosen by them, i.e.to build existing capacities horizontally rather than start from scratch a vertical expensive program of their own which cannot be sustained.

This evaluator pays tribute to the painstaking work of all partners, the SI(I) team and the parents who have contributed immensely by their belief, their faith and their energy.

38

Justification Short-term recommendations Mid-term recommendations

Long-term recommendations

1. Training

a. Multiple nature of the disability, need to address other disabilities. In addition to deafblindness, most of the children in the SLC programs have CP, MR, ADHD or Autism –like traits. Staff need to be better equipped to address these issues appropriately.

Of specific concern is positioning, seating, gait-training, feeding, posture,

Low-cost A&A, from mud, used cardboard etc. can be developed by the staff, using APT and similar readily available material

Request SPASTN for training on the above-mentioned subjects, (including APT).

All SLCs can benefit from upgrading of non-db skills.

SI(I) training team may need to expand in order to include some more therapists.

SI(I) may wish to lobby with RCI to modify its training in Dip in Spl.Ed. (DB), so as to include more content, theory and practicals on CP, MR, Autism and ADHD and other associated disabilities.

Request reputable institutions to mentor/advise, on an ongoing basis, those aspects that are ASSOCIATED with severe DB.

b. Music therapy, Hydrotherapy and more advanced Sensory Integration, needs strengthening in most of the centers, except RLC west. c. Professional development of staff needs to be upgraded both in EI and VT d. There is a continuous need for professionals especially in Goa, Kerala and even in Nasik The Project has provided equipment for new-born

Request for senior physiotherapist with specific training in developmental therapy, to be included in the team as a Mentor.

Those with I yr training in DB may need Bridge Course, (now it is a 2yr course).

Expertise in Goa and in Kerala is available, and names have been suggested to SI(I).

For Nasik, the AYJNIHH and ADAPT should engage with hospitals, especially NICUs in Govt. Hospitals.

May consider getting training

More focused capacity –building needed on these areas.

Start Training courses in Goa, Kerala, on Diploma in Deafblindness because larger numbers of children will then have access to quality services from fully qualified professionals

May wish to think of 2nd generation EI, if possible

Diploma to include more content on these aspects.

Request RCI for Bridge course

Request funding support from NT as was done for first 3 years in Autism training(2003-4-5)

Include this in diploma course, offered by the Helen Keller institute

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screening for hearing impairment. It is important therefore to provide for new-born intervention as well. Early intervention is meant to be from 0-6; however, none of the centers had children below 2.5yrs (other than a few in BPA). Very early intervention needs to be initiated, now if possible.

in physical newborn screening/intervention (other than the machines given in the hospitals).

May wish to use Nancy Bayley and similar tests.

2. Stronger Linkages with appropriate authorities. (SI(I) team is very good in networking, building linkages and bridges) Access to SSA schools need strengthening in Goa, Kottayam, Bangalore and Nasik. b. No linkages yet with Rashtriya Bal Swasthya Abhiyaan (RBSA) even with the RLC. (National Child Health Program of Ministry of Health GOI) c. Link with ICDS is good, but the next step from EI is placement IN the ICDS programs, at least for a few to start with. Not easy, but efforts may be considered.

Each SLC to start a dialogue with the State SSA-IE and RBSA programs, for the express purpose of getting involved with it, and availing benefits thereof.

RBSA targets disability as one of its major focus areas.

ICDS—access to these centers could benefit from

At the national level, SI(I)may wish to directly dialogue with the MOH-GOI, to ensure that DB is included as one of the recognized disabilities in their national and state programs

SI(I) has a lot of ready IEC material that RBSA will be grateful for.

3.Engage more with media, like Goa

Invite groups of journalists from the print and electronic media for an interaction with

Prepare and disseminate case studies in regional languages about Daya and

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the children and their families, on regular basis and not just for events.

others like her.

4.Research not seen, despite pioneering work being done, both in IBR and CBR

Survey by AWWs, after training could be conducted

NIEPMED and NIVH/NIHH to be explored for possible research tie-ups.

PREM division/MSJE also.

ICMR to be contacted also

Time to develop indigenous tool on DB in India. Request NT to take this up with MOHFW as was done for Autism in 2004-5

Alternatively, check if the new IMFAR tool is inclusive of DB.

5.Rights-based approach missing

Train teams in RTE, PWD, UNCRPD, NTA

Train parents in fighting for SSA admissions, and act as pressure groups

Prepare local language materials

Include these (or, more of it ) in the training courses

6.Hydrotherapy-swimming pools needed because most of the children are older, and will benefit from the buoyancy and sensory benefits of water

NAB-Nasik, and Caritas-Kottayam can start first as construction work is going on in these centers Management is very supportive as well as resourceful

SI(I) may wish to target transfer –of- skills in these areas

To include in the training course

7. Parents want life-long residential care, since a majority of the clients are in the severe category, and their parents are growing old. NT provides for this kind of support, under its Gharonda Scheme. This could be sourced.

Again, NAB-Nasik, Caritas-Kottayam can start first as construction work is going n these centers

Parents’ networks should also work towards this.

Simultaneously network with Parents Groups of other disabilities

Good example of Parents group in Kerala, where about 30 parents bought adjoining land and formed a large residential center as well as farmland

GOI’s support was promised by the JS/MSJE, at the 3rd National Conference in Delhi in Jan2014, and this may be seen as a priority for SI(I).

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8. Doctors giving wrong advice to parents, wasting critical years of maximum learning in the early childhood years.

Projects to hold awareness /sensitization of THOSE specific doctors who are advising “ nothing can be done, leave them alone”

Larger groups of Pediatricians, Neurologists ENT and Eye specialists

Write articles/ notes for medical journals with case-studies

9. Vocational training is still rudimentary in most projects, with the exception of RLC west.

NAB-N to visit ADAPT’s Job Development Center in Mumbai.

All partners may wish to visit Ramanna Maharshi residential agro-animal husbandry training center for disabled adults, outside Bangalore

NHFDC, NT ARUNIM, Labour Ministry VTCs—to be explored for possible linkages

SI(I) may wish to lobby with National Skills Development Authority (NSDA)

10. This project is actually very good. Replicate in Eastern and Northeastern States of India where poverty levels are even lower, more unmet needs, but plan for at least 5 years because 3 is too short for a new disability in a new organization.

Engage with donor, GOI

Explore NGOs in MD, VI, and HI.

Explore opportunities with NE HU

Also with IGNOU Training Centers

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Annexes

SWOT Analysis in assessing the project to date

Strengths

Pioneering work in introducing a new disability

Brought hope to many who were neglected, even at home

Parents’ strengths/support is visible

Media, civil society support is visible too

Sense has earned enormous goodwill

Earlier projects carry-over benefits are utilized

Choice of strategy(piggy-backing) is good value for money

Combined goodwill of two organizations— Local and national --is multidimensional in terms of reach,

policies/schemes, and technical expertise/ skills

Young and energetic teams

Weaknesses All the difficulties associated with a new subject

Lack of awareness, even among doctors, thereby wasting many precious primary /critical years

Inter as well as Intra-NGO egos cause fragmentation within the disability sector

NAB-K is a case in point where the management appear to be at loggerheads with each other

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Opportunities

There are enormous opportunities for working together, GO and NGO, but a history of mistrust overshadows the

disability sector in general.

Need aggressive marketing of Organization’s abilities, and benefits thereof.

Sense team led by Akhil Paul is extremely well respected, and included now in every sphere.

Networking with SSA, RBSA, NIs, NT (Niramaya, Arunim, Gharonda, Respite Care, and other schemes ), are there,

but not all partners are making the effort to explore and/or follow-up( Nasik is and so is BPA)

All the NGOs-projects have some goodwill with civil society as well as with the Health (Govt. and private), and

Employers, but NAB-Karnataka is not utilizing those contacts either for early intervention or for employment-related

training.

NHFDC has not been explored for IGA by most partners, except by RLC west

Threats Of non-sustainability, especially with NAB-K

Of non-professionals taking over, after funding stops, thereby triggering a downslide in quality

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1

April 2013

Hansa’ s story

Hansa was born into a family of poor, rural wage

labourers in the remote village of Dhanki, Gujarat.

Profoundly deaf with low vision and learning difficulties,

Hansa’s life was a lonely struggle. Her disabilities were

not understood by local villagers and she was branded

as the lord’s curse. The family was shunned. Their

presence in the fields or in local homes was seen as bad

luck. The family’s livelihood depended on the work they

could get in the fields and this stigma was a heavy

burden to bear for Hansa and her family.

Fortunately, things took a turn for the better with the

arrival of Deepak Bhai, the educator from Ashirwad

Viklang Trust trained by Sense International (India). He

helped Hansa to understand her environment and soon

Hansa began responding, displaying remarkable progress. She learnt to count with

beads, do simple arithmetic and took over the household chores, becoming an asset to

her mother. She began communicating with sign language and a new medium of

conversation and expression opened up. Deepak convinced the local school to admit

Hansa and in a short while Hansa was spelling her name in English among other things.

The reclusive Hansa transformed in to a confident young girl who could wield a cricket

bat with flair!

It took a while for these changes

to be recognised by local villagers

but slowly the community began

to accept Hansa and her family

again. Farmers employed

Hansa’s parents in the fields and

Hansa herself is now a farm

hand. The family is invited to

social and community functions

and Hansa has found her own

group of friends.

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Today, Hansa and her family are more positive about their future. Hansa is registered under the Government of India’s Mahatma Gandhi National

Rural Employment Guarantee Act (NREGA). The Act enhances the livelihood security of people living in rural areas by guaranteeing a hundred

days of wage-employment in a financial year to a rural household. Recently, Hansa’s family also built their own home under the Government of

India’s social welfare programme ‘Indira Awaas Yojana’.

With the right support isolation has become a thing of the past for Hansa and her family and with the help of SI(I) she is now able to live a full and

active life with as much independence as possible.

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Case Study Shiva-Caritas Kottayam

Moving towards Independence...

Introduction

Shivalakshmi is a 4 year old child and the second child in the family. She hails from Pathuva village in Kottayam, Kerala

State and her family comprises grandmother, parents and two siblings. Her father works as a wood cutter and mother is a

house wife.

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Shivalakshmi was born in 2009. She is the pet for her family members and neighbors and with love they call her ‘Shiva’.

Shiva is very sweet and loving. She loves to play with other children and happy when cuddled.

KSSS Intervention

When the Deafblind programme field worker of KSSS located the child, the child had delayed development milestones

with no head coordination, poor motor coordination, poor eye movements and no hearing. As the family was economically

weak they were unable to take regular treatment for epilepsy and she suffered from frequent episodes. It was clear from

the medical certificate that Shivalakshmi suffered from Down’s syndrome with Cerebral Palsy and epilepsy.

Thereafter the KSSS team visited the child. Shiva’s mother Mrs. Usha narrated the sad story of her ignorance that

caused the problem. She was very depressed when we met her and was overwhelmed with guilt when she was narrating

this story. Mrs Usha said that before setting out a pilgrimage, she took tablets to prevent menstrual cycle unknowingly that

she has already conceived. Soon after delivery though the doctor had informed them about the disability of the child still

they had no much information about it but when the developmental milestones delayed they consulted the Pediatrician

and understood the problem. But due to the poor financial condition they were unable to continue the treatment.

The child was assessed by the KSSS team and found problems with functional vision and hearing. The family members

were oriented about the child’s needs and the interventions required for the development of the child. The family was

given awareness about the deafblind programme and the need to render specialized training. Several counseling

sessions were conducted for the family members and especially for the mother who believed strongly that her ignorance

had caused the disability. Hence our initial efforts were to strengthen Shiva’s mother. The regular counselling sessions

helped to uplift mother’s mental state from her depressive ideations and to extend a ray of hope. She also joined the CBR

SHG and is a member of the Family Networks. She is empowered now and actively takes part in all the programmes of

deafblind project. She is also a good trainer and takes up the training of Shiva at home efficiently.

The KSSS team along with the parents prepared the Individualized Education Plan and training was planned in the areas

of Communication, ADL, Motor Skills and Sensory. The staff initially rendered home based training and thereafter she

started attending the Samaritan Resource Centre. Initially the family was not much interested to come to the resource

centre because of the inconveniences in the family but the positive changes in Shiva through Resource Centre trainings

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impressed them especially the sensory trainings which was very new to them boasted their confidence about Shiva and

they found the Resource Room very useful.

Through the Family Networks under the advocacy initiation of KSSS, Shiva’s mother is getting benefit of Rs 525/ monthly

under the Aashwas Kiran Scheme. Applications have been forwarded for Pension and Scholarship benefits. Shiva has

also attended Medical Camp organized by the Block Resource Centre under Sarva Shiksha Abhiyan for assistive

equipments.

For her social development she is taken to the CBR group meetings and she participated in the Tableau presented by

deafblind children during the Golden Jubilee Annual Agricultural Fest of KSSS. She acted out Saint Alphonsa and she

really looked so pretty and blessed and her role added to her happiness.

Results

A year of regular interventions and trainings has resulted in tremendous changes in Shivalakshmi. Currently Shiva can sit

independently and has improved her hand coordination. She can hold biscuits for a few seconds. She has improved her

expressive communication the sensory training for vision has enabled her for tracking and focusing at objects. Shiva is

very fond of luminous toys in the sensory room and tries to hold them. Moreover she has also improved her hearing skills.

Through the regular medical and nutritional support given to the family by KSSS with the support of Sense International

India, her health has improved and the occurrences of episodes of epilepsy have reduced.

KSSS team along with Shiva’s family now dreams of leading her to independence with the generous support of Sense

International India.

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Case Study – Sneha Joseph ‘When one door of happiness closes, another door of happiness opens’ -Helen Keller Sneha Joseph resides in an Orphanage named Providence Home at Arpookara village in Kottayam. She is a 4 year old child and being the youngest among the inmates of the home she is very\dear to them. She belongs to a family residing at Tamil Nadu and has three siblings. Her mother found difficult to manage the family as Mr. Joseph was an alcoholic and assaultive so she brought Sneha to the Providence Home and rarely visits the child. The sisters of Providence Home were confused about her further rehabilitation because she has no vision and also suffers from hearing impairment but she was an intelligent girl. In this situation they consulted a doctor who is also their Board member and this particular doctor had attended the sensitisation programme conducted by KSSS hence he referred this child to our deafblind programme thus the Sisters of the Home approached the Project Coordinator. The project staff team of Deafblind Rehabilitation Programme visited the child at Providence Home and gradually a good rapport was established with the sisters. Sneha was born in 2009. She belongs to a broken family and her mother had undergone severe stress during her pregnancy. Sneha is a deafblind child. The Sisters of the home were unaware about a disability named ‘deafblindness’.

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Hence the team explained them about the child’s disability and convinced them about the unique nature of the disability They realised that deafblind persons required a specialised trainings and this would only help to cater the needs of Sneha. Sneha had lot of behaviour problems. She was dependent daily activities, could not communicate and has no orientation of place and no mobility (Could not move even inside the home and was carried by the Sisters and inmates). KSSS Intervention through Deafblind Rehabilitation When the Deafblind programme, special educator first visited Sneha she was very upset because the child had severe behaviour problems and it was difficult to handle her. However Sneha’s assessments were completed by the team and Individualised Educational Plan was formulated. The Special Educator gradually trained the child to identify the teacher through her smell and by symbol and very soon Sneha became very close to her. Now Sneha attends the services rendered through Samaritan Resource Centre. Tactile sign language mode of training is used to teach Sneha. Her IEP includes Activities of daily living, Communication, Orientation & Mobility training and Sensory trainings. Results After a year’s regular training we are proud that Sneha has developed a lot and is moving towards independence. Her behavioural problems have reduced through various activities. Currently she can indicate sign & communicate her need for toilet. The orientation and mobility training helped her to gain awareness about her environment and at present she can walk with the support of ramp to her room as well as independently walk to her training room which is outside the main building. Sneha participated in a Tableau presented by the deafblind children during the Golden Jubilee Agriculture Fest and she took the role of an ‘angel’. In the costumes of an Angel she looked very gracious and her participation made her happy. The KSSS team and the Sisters of Providence Home are confident that the intense trainings will help Sneha to win over her disability and live independently. And we are happy to acknowledge that this has been possible only because of the generous support and pioneering efforts of Sense International India.

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Case Study - Caritas Goa Name- Mohamad Gaus Mulla. (Ayaan)

D/O/B- 15/05/2006, Age- 8 year’s, Sex- Male

Hearing- He can hear. (ENT Evaluation BERA Profound hearing loss)

Vision- Low Vision.

Special Educator - Sabyasachi Deb (Trained from Hellen Keller Institute in the Diploma course)

Communication- Expressive- Speech, (water, T.V, (Chota Bhim) mamma, Aulla, glass, A to Z) Body Language, Basic sign

language, (water, toilet, fish, apple, finish, ball, Fan, cat, A to Z) Vocalization, Facial Expression, pointing,

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Receptive- Speech, Sign Language, Facial Expression, Picture, Objective Symbols, body language, pointing, Total

Communication.

Family History

Father Name- Mr. Karim Mulla.

Education- B.A

Occupation- Govt. job.

Mother Name- Nasimabanu Mulla.

Education- M. Com.

Occupation- Private Job.

Present Address- Mapusa Goa.

Phone No-

Medical Information

Development Milestones

Head holding- at 2 years

Rolling Over- 1 year

Sitting- 2 year

Standing/ Walking- 3 years

Speech/ Babbling- 6 month.

1st word- Allah.

Age of identification

Hearing- 5 month

Vision- 5 month

Age intervention

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Vision-

Hearing- 2year.

Service providers- P.T, O.T, Special Educator

Achievements:-

Language and Communication:-

ACTIVITIES OF DAILY LIVING

Sitting Drinking

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ACADEMIC

Reading & Writing

Concept - About Rain.

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MOTOR SKILL:

CARITAS GOA (networking)

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Case Study – Bhupendra Deshpande

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The 6 pictures above, of Bhupendra Deshpande from NAB Nasik, clearly show that words are not surroundings. He is

seen above with the NAB Nasik Project Coordinator Jyoti, confident and necessary to tell the story of his journey, as the

child gets more and more involved with his trusting.

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Sample Innovations

5 a side Football Tournament Organized by

Caritas-Goa

A 5 aside Futsal tournament was organized as a fund raiser for the DEAFBLIND children & young adults in Goa, on the

21st& 22nd of September 2013 at the Don Bosco Oratory, Panjim.

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We had 38 teams that registered for the event. The entry fee for each team was 500/- The matches took place over 2

days from 3pm to 12.30am.

We started the evening by introducing deafblindness and by telling them what Caritas & Sense were doing! We ended by

showing our video…

Screening of the video

On day 1 the knock out matches took place and the teams were categorized into batches and pairs to play one another.

On day 2 the quarter finals, semi finals and finals took place.

The prizes that were been given were:

1st prize: Rs 6000/- , trophy, certificates

2nd prize: Rs 4000/- , trophy, certificates

Best Player

Best Goalkeeper

The whole show was managed and organized by the Caritas team and by volunteers, who came and helped make this a

big success.

At the end the certificates and trophies were presented to the winners and runner ups.

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We managed to sensitize a large group of people and youth from the sports sector, who were very interested and reached

out to a lot of interiors of Goa. 3 of the winners spontaneously even gave back their award money, as a donation to the

deafblind project

Player in Action!

Donating their cash prize to DB project

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Raj, BPA Ahmedabad, is now a trained masseur with a certficate from their recognized course. He has passed his 12th

standard examinations and is now economically independent.

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Sample list of persons that the Goa project staff get help from:-

Doctors/Hospitals: Sr. No Name Hospital Position Address

1. Dr. Edelweise De Sa Private Practitioner

Physician Panjim, Goa

2. Dr. Roque Rebeiro JMJ Hospital

Obstetrician & Gynecologist

Alto, Porvorim, Goa

3. Dr. Megha Novi Survat

Physiotherapist Porvorim, Goa

4. Dr. V. N. Jindal Goa Medical College

Dean Bambolim, Goa

5. Dr. Basil Yuri Cotta Private Practitioner

Ophthalmic Surgeon

Margao, Goa

6. Dr. Ramnath Naik Private Practitioner

Pediatrician Margao, Goa

7. Dr. Ravindra Panandikar

Private

Practitioner

Paediatric Ophthalmologist & Squint Specialist

Margao, Goa

8. Dr. P. D. Nachinolkar Hospicio Medical Suptd Margao, Goa

9. Dr. Ira Almeida Hospicio Seniro Pediatrician

Margao, Goa

10. Dr. Kulkarni Private Practitioner

Eye Clinic Margao, Goa

11. Dr. Nelly De Sa Private Practitioner

Pediatrician St. Cruz, Goa

12. Dr. Chandrakant Gaonkar

My Eye Hospital

Nuvem, Goa

13. Pediatric Ward The consultants GMC Bambolim

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14. Dr. Siddarth Darji Manipal, Hospital

Sr, Executive (Operations)

Goa.

15. Dr. Kartihaivalem Manipal Hospital

CEO

16. Dr. C. P Das GMC HOD – ENT Bambolim, Goa.

17. Dr. Pinky Palienkar Private Practitioner

Child Specialist Caranzalem

18. Dr. Ramaswamy Polyclinic Hospital

The administrator Altinho, Panjim. Goa

19. Dr. Rajeev Kamat Asilo Hospital HOD – ENT Mapusa, Goa

20. Dr. Virendra Gaunkar Citicare Children’s Hospital

Campal. Panaji

21. Dr. Ameet Kaisare Private Practitioner

Panaji, Goa

22. Dr. Shyam Telwankar Asilo Hospital Medical Superintendent/Dy

Director

Mapusa, Goa

23. Dr. Ulhas Kaaisare Private Practitioner

Ophthalmic Surgeon

Panaji, Goa

24. Dr. Victor Fernandes Eye Clinic Eye Surgeon Porvorim, Goa

25. The director Neuro Rehab Centre

Bambolim Goa

26.

Organizations visited by Goa staff as part of awareness and assessments Sr. No Name Position Organisation Address

1 Mr. Zeferino D’souza Secretary Diocesan Society Of Education

Panjim, Goa

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2. Mr. Naresh Babu INSYNC – kidz Rehab Centre

Sancoale, Goa

3. Fr. Valmiki Gonsalves Director Daddy’s Home Gogol, Goa

4. Sister Superior Peace Heaven Home & school

for mentally challenged

children

Caranzalem

5. Dr Nandita The Director SETHU Panjim, Goa

The Director Disha Charitable

Trust

Panjim, Goa

Schools/Colleges visited by Goa staff as part of the awareness programs:- Sr. No

Name Position/Name Address

1. Fairyland School The Headmistress Goa, Velha

2. New Dawn Ashadeep Special School

The Chairman Sada Vasco

3. St. Vincent De Paul Special School

The Headmistress Curtorim, Goa

4. Naval K G The Headmistress Ss Vasco, Mormugao

5. Ms. Elsa Polytechnic College

Altinho, Panjim

6. People’s School for appropriate learning

Ms. Thakur Panjim, Goa

7. Lok Vishwas Pratishtan

The Principal Ponda, Goa

8. Anand Niketan Ms. Veinola Mohe Mapusa, Goa

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9. Gujrati Samaj Educational Trust

The Chairman Aquem, Margao

10. Our lady of Lourdes High School

The principal Utorda, Goa

11. Hamara project The Principal Taleigao, Market

12. Sanjay School The Director Porvorim, Goa

13.

14. National Association for Blind

The director St. Cruz

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Some Samples of material published as part of this project This project has contributed extensively to material development on important matters relating to persons with

deafblindness. There are many, many more than the ones seen in the pictures above and below.

The Goa team has done a very good video; just adding the titles of sponsors is to be done. It will help the other partners

too.

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Compilation of responses from partners to key evaluation questions (compiled by Uttam Kumar)

Impact and Overall Results so far:

What is the project’s overall impact in relation to its outcome and how does this compare with what was expected?

The overall impact in relation to its outcome :-

Empowerment of Deafblind persons.

Streamlining into society

Right to Education, Health, Social Security & Economic Independence.

Empowerment of Parents

Public awareness could be created about deafblindness

Improvement in the living conditions of the Deafblind Persons.

What are the key results against the outputs and how did this compare with the targets set in the original logical framework?

Assessments have benefited for early diagnosis and early intervention will ultimately reduce the intensity of the disability.

Regular Medical Services and control over epilepsy.

Cataract, Ptosis and Orthopaedic Surgery was conducted for 6 deafblind children.

Assistive devices provided and regular therapeutic interventions have reduced the disability.

Through Exposure visits the children got a good exposure and happiness and ‘We-feeling’ among members

Advocacy and lobbying resulted to stand for the rights of deafblind persons to education, health, social security and economic independence.

Socio-Cultural development of children through participation of deafblind in extra curriculum activities has brought happiness to them and their parents and boasted a well feeling in children as well as in parents.

Setting of Resource Room and trainings in Sensory Room have enhanced the quality of training and cater the needs of the unique nature of the disability and better developments in children.

Inclusion of adult deafblind in IGP and livelihood has their reduced poverty and increased their self esteem.

How effective is the project’s overall strategy?

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The project’s overall strategy is very beneficial for the empowerment of the deafblind persons and caters the needs of all age groups.

Assessment and Medical assistance

Regular Medication and Improved Quality of Training given by the Special Educators

Improvement in the living conditions of the Deafblind Persons.

Regular therapeutic services will reduce the disability.

Cataract, Ptosis and Orthopaedic Surgery was conducted for 6 deafblind children.

Trainings and Resource Room

Home based and Centre based trainings have benefited 28 children. Setting of Resource Room and trainings in Sensory Room have enhanced the quality of training and cater the needs of the unique nature of the disability and better developments in children.

Home based Vocational trainings for adult deafblind has also beneficial to attain self reliance.

Assistive Devices

Assistive devices provided and regular therapeutic interventions have reduced the disability.


EI Screening Machine:

New Cases were identified, Policy Formulation: Hospital made it a Policy for Compulsory Vision & Hearing Screening of each new born baby

State level Training on deafblindness:

More organizations started working for deafblind persons.

New cases identified after Training

Early identification and early intervention will reduce the intensity of the disability

Awareness about deafblindness in the public

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State level Advocacy and Networks Meet

Advocacy and lobbying resulted to stand for the rights of deafblind persons to education, health, social security and economic independence

Strong and Vibrant Family Network.

Empowerment of Parents and adult deafblind.

Family Network Meeting in every Three months

Exposure visits for children


Other Activities

Inclusion of adult deafblind in IGP and livelihood has their reduced poverty and increased their self esteem.

Participation in various cultural programmes developed the innate talents of the children.

Staff capacitating trainings have equipped staff to render enhanced professional services.

If relevant, in what ways does the project: i) improve global/regional/national/local policy; ii) and/or strengthen legislation and enforcement mechanisms to protect and empower disadvantaged target groups; iii) and/or raise awareness amongst civil society and service deliverers about rights. Provide examples.

If relevant, in what ways does the project improve practice by providing greater access to quality services for disadvantaged groups? Provide examples.

Key Evaluation Criteria 5and Value for money (VfM)6 questions:

Relevance To what extent is the project supporting achievements towards the MDGs, specifically off-track MDGs?

The project is supporting various programmes to achieve towards the MDGs:-

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Promote gender equity and empower women: KSSS believes in empowerment of women. Gender inequity is one of the major problems in our villages but we focus

on empowering our mothers. Mothers’ day, Women’s day, such occasions are celebrated. We maintain gender equity and promote equal ratio of Male and Female. In our PTA meetings participation of both

parents is compulsory.

Improve Maternal Health To improve maternal health, health awareness programmes are conducted for the mothers.

Ensure environmental sustainability

For environmental sustainability we promote kitchen gardens. The seedlings of different vegetables are provided to them from KSSS and we have launched a programme for the deafblind persons to make a kitchen garden in their homes and the deafblind person having the best vegetable garden will be given prize.

The children of the Samaritan Resource Centre have also made a vegetable garden in the centre.

To what extent is the project targeting, reaching and benefiting the poor and marginalized? Through this project we are able to provide services to the 54 deafblind persons. Most of them belong to BPL

category. We also have few deafblind persons belong to the schedule caste. To what extent is the project mainstreaming gender equality and equity (men, women, girls and boys) in the design and delivery of activities (and/or other relevant excluded groups)?

KSSS always focus gender equity. Gender inequity is one of the major problems in our villages but we focus on empowering our mothers. Mother’s day and Women’s day are celebrated.

We maintain gender equity and promote equal ratio of Male and Female. In our PTA meetings participation of both parents is compulsory. In all our programmes we ensure gender equity.

How is the project ensuring activities respond to the needs of target beneficiaries?

The Individual Educational Plans are prepared with the support of parents and the needs of the children are taken into consideration. The family-teachers –adult deafblind networks and the PTA meetings help us to understand the needs of the target beneficiaries and cater their needs. The weekly Staff review meetings and monthly Staff case

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review meetings the condition of each deafblind person is taken and discussed and the needs of beneficiaries is taken into consideration.

To what extent and how is the project affecting people in ways that were not originally intended? In Kerala the people were not aware about the concept of deafblindness, The NGO’s and Special Schools were rendering trainings to the deafblind persons similar to the multi-disabled children but after KSSS started functioning as the State Learning Centre on deafblindness, the public got aware about the disability ‘deafblindness’ and the need to give special training to cater their needs. The Resource Room which we started especially visual stimulation and auditory training given in the dark room is a very new concept. The sensory room trainings and sensory garden and positive changes in the children has good impact on the public and created awareness that the trainings given to deafblind children differ from other disabilities. Effectiveness

To what extent is the project delivering activities that are value for money with regards to their economy and efficiency?

The project provides trainings, screening and assessment facilities, therapeutic services and assistive devices, medical and nutritional support, vocational trainings, and IGP support for the adult deafblind persons.

To what extent is the project using evidence to improve programming?

The weekly Office level Staff Meetings and the monthly Staff Case Review meetings takes each component of the project is discussed and evaluated.

The Family networks, adult deafblind and Parents meetings helps us to evaluate our work and to improve

The valuable suggestions for improvements are taken into consideration.

What are the key drivers and barriers affecting delivery of results for the project?

As deafblindness is a new concept some government departments are not willing to accept this concept or their ignorance have caused delay in services, the deafblind persons of our project are scattered in different and distant villages so all the children they are unable to get the benefits of resource centre. Lack of Funds is also another barrier.

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To what extent do the activities, services and results being delivered by the project align with the intended objectives of GPAF?

The activities and services are delivered to reduce poverty, attain self-reliance and improve the livelihood conditions of the deafblind persons.

To what extent is the grantee delivering activities on time and on budget against agreed plans?

Other than the planned activities we also raise Local Resources. Eye and Orthopaedic surgeries were conducted for six deafblind persons. Also assistive devices are provided to the beneficiaries through the support of various agencies.

To what extent and in what ways is the project achieving good value for money?

KSSS encourages promotion of Kitchen gardens and this is of good value in terms they will get vegetables from their house, moreover the yields are free of pesticides.

Are resources being used efficiently to optimize the results achieved compared to the required level of inputs?

All the facilities and benefits of KSSS are rendered to the deafblind persons.

The home based and centre based trainings have brought good changes in the children. The assistive devices and therapeutic services have been beneficial to reduce the capacity.

The medical camps has the improved the health of the people.

Through the Panchayats the children get pension and scholarships.

The OAE equipment launched at Caritas Hospital have compulsory screening of new born babies.

Sustainability

To what extent is the project leveraging additional resources (financial and in-kind) from other sources?

The project to leveraging additional amounts from other sources. We are getting assistive devices for children from the Block Resource Centre of the SSA as well supported by the Little Flower Hospital, Angamali.

To what extent is the project engaging with others to ensure their interventions complement existing activities or leading to replication of approaches elsewhere?

The Olessa Blind School, Jyothigamaya, Villooni School for deaf are also working for deafblindness.

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To what extent are the benefits being realized by civil society groups supported by the project sustainable?

KSSS has civil society groups. In every village there is a Village Development Committee which is the apex body. In the meetings of the Village Development Committee the functioning of the village level the functioning of the deafblind programme is also discussed and evaluated.

What is or can be done to ensure the sustainability of the project results? This includes the sustainability of poverty reduction outcomes and, where appropriate, the continuation of services developed during the project period.

The deafblind persons can be included in NREGA scheme of the Panchayat. Promotion of Income Generation Programmed for the deafblind persons with support of the Panchayats or Government

Building capacities of adults with MD and Db to lead inclusive life

Vocational training Income generation Family and social life

Impact

To what extent has the project put in place M&E systems that are fit for purpose and are being used to support the delivery of activities?

To what extent has the project built the capacity of civil society?

The deafblind persons are included in all the programmers of KSSS.

Inclusion in the SHG of Persons with disability.

Inclusion of deafblind persons in public functions and events.

How many people are receiving support from the project that otherwise would not have received support? How many of these people are unintended beneficiaries?

Forty five of the beneficiaries are receiving support from the project.

Risk Management & Mitigation Did the risks identified in the original proposal and annual reports materialise?

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During the initial period of the project there were difficulties. Though the staff had experience in disability but as the concept of deafblindness was new they were not much confident and we had the risk about output of trainings for communication and regarding improvements through training.

Initially it was also difficult to convince the parents about the unique nature of the disability and the specialized trainings.

If so, how did the project deal with risk to minimalize negative impact on project results?

To deal with the risk to minimalize negative impact on project results the following steps were taken: Staff capacitating trainings were conducted Parents also attended training programmers and were sensitized about the concept of deafblindness. Parents also come with the children in the resource centre and were trained in different areas like communication,

visual training, auditory trainings etc. Mentor’s visits and Onsite visits also helped and uplifted the confidence of the team.

Project Accountability to Stakeholders How has the project collected feedback from beneficiaries and how has this been used to influence project decisions on implementation?

After every programme we conduct evaluation and the suggestions of improvement are implemented. Regular house visits are conducted in the beneficiaries’ houses and their feedbacks are taken. In the case review committee each and every feedback given by the beneficiaries are discussed. In the Networks meet and in Parents teachers meeting their suggestions (positive & negative) are taken for each and

every activity and we ensure that the negatives are not repeated. Lessons Innovation: Describe any project innovations which have the potential for scaling-up or replication by Sense International or other organisations. UN has declared this year as the Family Farming Year and to support the MDGs environmental sustainability we have launched a programme, ‘My food at my home only’. The beneficiaries are provided seedlings from KSSS, and will plant various types of vegetables and make a vegetable garden in the courtyard or at the roof of the house.

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Equity and Gender: What are the key lessons learned from the project’s approach to reducing inequalities between men, women, girls and boys or other relevant aspects of diversity? We have learned that already there is gender inequity in our villages so we should ensure the participation of equal ratio of males and females in all our programmes. Capacity-building: Describe key lessons learned in relation to capacity-building of partners, community groups etc.

The capacity building of partners, community groups have motivated them to work for the deafblind persons. Few people have shown interest to do volunteer services. More references from other NGO’s and services could reach to more deafblind people. The screening of new born babies because of the OAE machine had helped to identify risk babies and early

interventions will be beneficial. Monitoring & Evaluation: What tools and methods have been most useful and practical in measuring and demonstrating evidence of project achievements?

The most useful and practical tools and methods in measuring and demonstrating evidence of project achievements are:-

The positive changes in children through training The changes in the attitude of parents and their confidence level has raised We are getting more support and cooperation from the Panchayats. A vast change in the attitude of the society towards the deafblind persons.

Evaluation Approaches to Empowerment and Advocacy: a) what lessons have you identified in relation to factors that enhance approaches to empowerment or advocacy processes? Through a collective group rights and benefits of the deafblind persons can be attained and the Policy makers can be influenced.

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B) What lessons have you identified in addressing resistance against the empowerment of marginalized groups?

The identified resistances against the empowerment of marginalized groups are:- Difficulty in accepting of concept deafblindness by the government authorities. Lack of family support and over protection of parents towards the deafblind persons. Lack of proper legislation and policies. Deafblindness is not considered as a special category.

Others lessons learned: Please describe any other lessons learned from the implementation of this project that you think may be useful for other partners, grant holders or DFID (e.g. policy level, sector level, GPAF fund level, organisation level – management, design and implementation)? Capacity building and vocational training classes to be introduced for adult deafblind. Applied learning: How has the project used learning so far to improve delivery? Conclusions

Summary of achievements against evaluation criteria. Summary of achievements against rationale for GPAF funding. Summary of problems and issues encountered. Overall impact and value for money of GPAF funded activities.

Recommendations for the future

Formation of Vibrant State Level Federations of deafblind persons will be beneficial. The deafblind persons can be included in NREGA scheme of the Panchayat. Promotion of Income Generation Programmes for the deafblind persons with support of the Panchayats or Government Encouragement of deafblind persons in policy making structures of Panchayat three tier system.

mid-term evaluation of sense i(i)

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