Supporting Disability Working Group Timor-Leste in the development of a 1 Year

CBR Diploma 1 Training Course

May 8 - May 22, 2012

Consultancy report by:

Vera van Ek Disability and Inclusion Consultant

Enablement, The Netherlands

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Table of Contents Introduction 3 1. Executive summary 4 2. Objectives of the assignment 6 3. Methodology 6 4. Background Timor-Leste 7

History 8 Plan for the future 9 Disability and CBR in Timor-Leste 10 Perceptions and belief system 12

5. General findings and recommendations 13 Outcome of meetings 13 Outcome of stakeholder meeting 15 Outcome of questionnaires 20 Outcome of field visits 24

6. Challenges 25 7. Final Remark 26 Annex 1: Population of Timor-Leste 28 Annex 2: Outcome meetings 34 Annex 3: Agenda Stakeholders Meeting/ workshop 41 Annex 4: Job Analysis CBR worker (separate mail) 43 Annex 5: Outcome Questionnaire for CBR organizations 44 Annex 6. Outcome Questionnaire Training Needs Analysis UNTL staff 57 Annex 7. Outcome Training Needs Analysis CBR professionals 61 Annex 8. Outcome field visits: Case studies 69

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INTRODUCTION

This report is the result of the consultancy on Training Needs Assessment on CBR as a part of Phase 1 of the ToR between the Disability Working Group (DWG) in Timor-Leste and Enablement, the Netherlands. The final objective of this collaboration is the Curriculum Development and Module Design for the 1-year CBR Diploma 1 Training Program and the development of the Training of Trainers (TOT) modules, the facilitation of a 3 weeks TOT for staff of the Universidade Nationale Timor Lorosa‟e (UNTL) and DWG members that will stand in as lecturers and facilitators for the actual 1-year CBR Diploma 1 Training Program in Timor-Leste in the year 2013. The report starts with the executive summary of the key findings and the major recommendations for the design of the CBR training packages and the TOT modules, both on methodology and topics. Followed by a short overview of the history of the country and the developments around disability and CBR, as well as the perception and beliefs on disability. This information is important for the contextualization of the CBR training program. The general findings and recommendations of the meetings, stakeholder meeting/ workshop, the questionnaires and the field visits can be found in Part 5, followed by the challenges and the final remark on this assignment. The products of this assignment are:

Frame work of a Job Analysis for CBR workers (Annex 4) Questionnaire for CBR organizations (Annex 5) Questionnaire Training Needs Analysis UNTL staff (Annex 6) Checklist Training Needs Analysis CBR workers (Annex 7)

The consultancy has brought out a lot of valuable information on training and training needs analysis, as well on the CBR organizations and their CBR workers, the capacities of the UNTL staff, the situation within the responsible ministries, the WHO and the different Ministries. I am convinced that the resulted information can form a sound basis for the development of the CBR Training Course and the TOT modules. I hereby like to thank Dhidhak Bandalan of CBM/ASSERT for her continuing support in this consultancy. I also like to thank the team of ASSERT for their hospitality and dedication and the teams of the organizations of the DWG for their support in all the field visits made. I also would like to thank the Enablement team for the support and critical feedback before and during the Training Needs Analysis and it has again been proven, that teamwork is a very strong and powerful tool. Beijing, May 31-2012 Vera van Ek

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1. EXECUTIVE SUMMARY The key findings of this assignment can be summarized as follows:

Key roles for the CBR workers: 1. Be the contact person for disability in the communities 2. Be the facilitator in the communities

Advocate

Educate

Enable

Support

Empower

3. Be the provider of basic rehabilitation (CBR) services in the home 4. Be the person in charge of monitoring and evaluation

Key activities for the CBR workers Perform community assessment Manage (project) activities

Support rehabilitation in broader sense

Provide for basic assistive devices services

Organize meetings

Network /liaise with relevant stakeholders

Refer to other quality services

Support in advocacy and lobby for the rights of the people with disabilities

Training modules Inclusive Community Development: CBR in Timor-Leste Community assessment including environmental assessment on accessibility Community mapping Community development: Twin Track Approach Disability in broader sense, disability and development; CBR-The State of the

Art Design of a CBR (treatment) plan Provide for basic treatment, including assistive devices Refer and follow up Communication and networking Training Advocacy Management Research and report writing

Remark: it is suggested to give some attention to gender and gender issues in combination with disability

Methodologies for the training course: facilitation Participatory learning All forms with active participation, practical skills training Q&A, Quiz, use of pictures (and as little text as possible, if text then simple

wordings) Case studies On the job training/ field exposure Step for step remedies

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Simple, straight forward Assignments to bring into practice what has been learned Focus on problem solving

Remarks: 1. It is recommended to make a workbook for the training, which participants can use during the entire training. 2. I would suggest to ‘design’ forms during the training with the participants such as: CBR assessment forms, physical assessment forms, environmental assessment forms, assistive device forms, follow up forms which can be newly designed or adapted from existing forms. Currently so many forms from different organizations are in use and none is the same that it becomes complicated to collect coherent data and follow up on the program. Designing an own form and practicing will enable the CBR worker to truly understand the form and use it properly once the training is finished 3. Study/ referral books: Disabled Village Children, Dream of Inclusion for ALL, Helping Health Workers Learn. 4. It is recommended that participants will get assignments after each module, which they can work out during their 3 weeks field exposure 5. During the study a coaching/ supervision system should be in place 6. As for the TOT, future facilitators will need to commit for 3 weeks and be prepared to do assignments in the evenings. This might need to be discussed and confirmed with the UNTL.

It is recommended that the DWG finalize a solid referral information booklet (or whatever form would be most suitable) so the CBR workers can attend and refer people with disabilities to these services: what services-where-what benefit. Many services are in place, people are not aware of them or do not know how to access them.

Disability in Timor-Leste

Timor-Leste

Total No disability

With Any Form of Disability

Walking Seeing Hearing Mental

Total 1,066,409 1,005,728 48,243 20,593 29,488 17,672 13,308

Male 536,390 510,947 25,443 10,731 14,865 8,993 6,652

Female 517,581 494,781 22,800 9,862 14,623 8,679 6,656

Since most of the CBR services now focus on physical rehabilitation and inclusive education for children, a vast group of people with disabilities is not attended to, and this will need to be addressed. Most of the information is not accessible for people with visual, hearing and mental intellectual disabilities thus contributing to exclusion. We need to ensure accessibility for ALL in the CBR training.

Major disabilities as seen in the field are: CP, including development delay Stroke Post polio Spinal Cord Injury Disabilities due to road traffic accidents: brain damage/ fractures Deformities Club foot Post leprosy Amputations Visual, hearing and mental intellectual disabilities

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The cornerstones of inclusion1 in broader sense should be interwoven in the training material

Attitude as the major barrier. This includes use of language and body language

Communication-how can we ensure that our message reaches ALL? Accessibility-environmental, transportation, political and attitudinal Participation-are people with disability really involved on all levels? Are they

emotionally, socially active in the process?

Follow up and M&E Good supervision/ coaching system needs to be in place for the future CBR

workers Simple forms ranging from assessment forms to M&E forms need to be

developed, used and accepted by all organizations

Accreditation The accreditation of the training course as a Diploma 1 Training course is not

yet finalized and would need to be addressed The steps to take to get the WHO accreditation needs to be followed up by

the DWG

2. OBJECTIVES OF THE ASSIGNMENT The objectives of this 2 weeks assignment were a part of the total agreement between the DWG, Timor-Leste and Enablement, the Netherlands. This assignment, Training Needs Assessment, was the first step of Phase 1: Curriculum Design and Development.

For Phase 1 – Curriculum Design and Development

Conduct Training Needs Assessment (TNA) in Timor-Leste Curriculum Development and Module Design for the 1-year CBR Diploma 1

Training Program Develop the TOT modules

For Phase 2 – Training of Trainers (TOT)

TOT for UNTL and DWG members that will stand in as lecturers and

facilitators for the (Phase 3) 1-year CBR Diploma 1 Training Program in

Timor-Leste

The outcome of this TNA will serve as the basis for the Curriculum, the Modules and the TOT to be developed.

3. METHODOLOGY The methodologies used for TNA were the following: ▪ Meetings (including skype meetings) and discussions ▪ Review of documents ▪ Stakeholder meeting/ workshop- 2 days ▪ Field visits and Focus Group Discussions ▪ Questionnaires

1 ACAP principle is used by Handicap International to address Inclusion

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▪ Data collection and analysis Since the consultancy was mainly done in country it offered ample opportunity to meet and talk with the beneficiaries of the different CBR programs currently implemented. This has contributed to valuable information concerning the actual situation of the people with disabilities in the country.

4. BACKGROUND TIMOR LESTE Area:

15.007 Km2

Population: 1,066,582 (2010 Census) Capital: Díli Nationality: Timorese Official Languages: Portuguese and Tétum (national language) Apart

from these there are another 15 local dialects Working Languages: English and Bahasa Indonesian Declaration of Independence: November 28, 1975 Restoration of Independence: May 20, 2002 Date of promulgation of the Constitution:

March 22, 2002, effective since May 20 2002

Government System: Parliamentary Republic Administrative Division: 13 districts, 67 Sub-Districts Ethnic Composition: Majority of the population is of Malay-Polynesian

and Papua origin; minorities of Chinese, Arabs and Europeans

Religion: About 90% Catholics; Minorities of Protestants, and Muslims

Climate: Tropical hot and humid; Tropical rains; Moderate in the mountains

Location: Situated 550 km north of Australia, it is the smallest and more eastern island of the Malay archipelago. Timor-Leste includes the enclave of Oecussi-Ambeno, situated on the Western (Indonesian) part of the island, and the islands of Ataúro and Jaco. It is the only Portuguese speaking country independent nation in Asia

Physical Aspects: North and South costs are divided by mountain ranges. Altitudes inferior to 3000 m; Most elevated point is the Ramelau with 2972 m. Vegetation characterized by the abundance of Teak trees, sandalwood trees, coconuts and eucalyptus

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HISTORY2 The history of Timor-Leste is an important aspect of the current situation in the country. Most of the people have lived through the latest ordeals as described below. The violence suffered but also the pride to have been able to overcome these, are issues that need to be understood. Timor-Leste is a young country with a long way to go to full recovery. But it is also a country where there is a lot of good will and many efforts are taken to ensure appropriate conventions and policies are signed. The next step will be to bring these documents to life and show that they can be implemented. The Island of Timor is currently divided in two parts: the West is part of the Republic of Indonesia with provincial capital in Kupang; while the East, whose capital is Dili since its independence, had been a Portuguese territory since the 16th century. During the third quarter of the 16th century, the first Portuguese Dominican priests arrived in Timor and started developing a progressive religious influence, even as the Portuguese domination was still being settled. In 1651, the Dutch invaded Kupang in the Western end of the Island of Timor, and took control of half of its territory. In 1859, the Dutch concluded a treaty with Portugal to determine the border between the Portuguese Timor (present-day Timor-Leste) and the Dutch Timor (Western Timor). Upon Indonesian independence in 1945, Western Timor was integrated into its territory. Right to Self-Determination From 1962 until 1973, the UN General Assembly approved successive resolutions, recognizing Timor-Leste‟s right to self-determination, as well as of the other two existing Portuguese colonies. The Portuguese Government refused to recognize that right, stating that Timor-Leste was a Portuguese province equal to any other. Revolution in Portugal The April Revolution (April 25, 1974), which restored democracy in Portugal, the Portuguese Government authorized the creation of political parties in Timor-Leste, and as a result, several partisan organizations emerged in Timor-Leste. Timor-Leste’s decolonization In 1975, with the dissolution of the Portuguese colonial empire, local liberation movements increased. In May 1975, the new law expected the election of a People‟s Assembly in October of the same year, in order to establish a political status. Long before those regional elections were held, it was quite obvious that the overwhelming majority of the Timorese rejected integration into Indonesia. Cultural differences were one of the main reasons. Declaration of Independence On November 28, 1975, FRETILIN together with the Prime Minister Xavier do Amaral, unilaterally declared the Independence of Timor-Leste. The declaration of independence led to a civil war. On the pretext of protecting its citizens in Timorese territory, Indonesia invaded the eastern part of the island and declared the island as its 27th province, renaming it Timor Timur.

2 http://www.gov.east-timor.org/

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Timorese Resistance After the occupation of the territory by Indonesia, the Timorese Resistance progressively consolidated itself. About one third of the country‟s population, more than 250 thousand people, died during the war. The Portuguese language was forbidden, and the pro-Indonesia Government discouraged the use of Tetun. Popular consultation – Yes to Independence In 1996, José Ramos Horta and the bishop of Dili, D. Ximenes Belo, were awarded the Nobel Peace Prize for their dedication to the defense of human rights and independence of Timor-Leste. On August 30, 1999, a referendum took place and 78.5% of the East Timorese favored independence and rejected the autonomy suggested by Indonesia. Nevertheless, pro-Indonesia militias went on a rampage, assaulting UNAMET headquarters (the observers of the United Nations) and forcing Bishop Ximenes Belo to flee to Australia, while Kay Rala Xanana Gusmão took refuge in the British embassy in Jakarta. The wave of murders continued, promoted by the anti-independence militias and supported by members of the Indonesian army dissatisfied with the referendum results. Intervention of the United Nations On September 18, a peacekeeping mission was installed, aimed at disarming the militias and supporting the transition process and the country‟s reconstruction. Restoration of Independence Xanana Gusmão returned to the country, as well as other Timorese who had gone into exile, including many with university education. Elections were held for a Constituent Assembly that became responsible for drafting Timor-Leste‟s Constitution. This document came into force on May 20, 2002; on the same day the country was given its sovereignty. This day is now known as Restoration of Independence Day Current situation Timor-Leste remains one of the 20 poorest countries in the world, and nearly half of the population lives on less than 1 US$ a day, which in itself is an indicator of poverty. More than half of the population has no food security, and only about 30% of arable land is being use for small crops or in combination with animal farming.

PLAN FOR THE FUTURE3

The Strategic Development Plan (of Timor-Leste) 2011 – 2030 has a strong focus on education, in building skills and capacity to take full control of the economic development creating opportunities to young Timorese4. The secondary education in Timor-Leste is divided into general and technical, the former is expected to pursue tertiary university education while the latter would be to enter into the work force and eventually seek higher and university education. In 2010 40,781 students graduated, 35,062 general and 5,719 technical educations. Approximately 43% of enrolment is in Dili. It is therefore expected that the remaining 57% are distributed in the 12 other districts. Higher education is also divided into higher technical education and university education, which are both funded to ensure maximum access, equity and quality for

3 From the Terms of Reference between the DWG and Enablement 2011 4 Timor-Leste Strategic Development Plan (SDP) 2011-2013; p. 08

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students5. Timor-Leste‟s national public university is the Universidade Nacional de Timor-Lorosa‟e (UNTL), which was established in 2000. The UNTL serves the national purposes of teaching and conducting research to provide knowledge to the community, promoting freedom of thought and strengthening Timorese culture and democracy. As the only public university in Timor-Leste, a legislative framework has been developed to ensure the UNTL‟s autonomy6. Seeking to professionalize the work of community workers working for and with people with disability, the DWG sought for collaboration with the UNTL Community Development Department to deliver training and encourage research among its student. Seeking accreditation to tertiary diploma 1 level will ensure sustainability of knowledge in Community Based Rehabilitation (CBR) for community workers working for and with vulnerable groups as it is based on the principle on the convention on the rights of people with disability, empowerment and sustainability.

DISABILITY AND CBR IN TIMOR-LESTE Community Based Rehabilitation concepts and strategies have been introduced in Timor-Leste since 2002 and a meeting with the government, non-governmental organization and people with disabilities was held to discuss disability issues in the country. It was agreed that CBR approach was the most appropriate to address the issues surrounding disability. The same year the UNTL Community Development Department was established under the tutelage of Victoria University, Australia and Ozaka University, Japan. Only in 2006 that a formal yearlong training was done to increase capacity for the human resource requirements to implement a successful CBR program in Timor-Leste. The Rehabilitation Treatment Program (RTP) (Program Treinamentu Rehabilitasaun) was designed to train NGO staffs for 1-year. The level 1 program graduated 20 local NGO staffs. The training was provided by international advisers from five (5) organizations responsible to conceptualize, prepare and deliver the training namely ASSERT, TLM-TL, Clinical Uma Ita Nian, Katilosa and Klibur Domin. The RTP was interrupted during the civil unrest in 2006 and was completed only in September 2007. In 2009 the CBR Working Group acted as an advisory group to the Ministry of Solidarity and Social (MSS) (the Ministry responsible for the welfare of people with disabilities) to develop the Timor-Leste National Strategy for Community Based Rehabilitation August 2010 including a Community Based Rehabilitation Training Framework. The strategy draws on the global CBR movement and the work of disability-focused organizations in Timor-Leste since 2002. The same year, the decision to draft the National Policy on Disability was finalized and the final draft was submitted to the MSS in March of 2010. It has been a significant milestone for the disability sector when it submitted the National Policy and was eventually accepted in May 2011. In 2012, a trimmer National Policy has been signed by the council and hopefully is enacted by the new regime (Note: as of this writing, the presidential counting is underway and parliamentary election is expected to be in early July).

5 SDP 2011-2030; p. 23 6 SDP 2011-2013; p. 24

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Another milestone for the sector was the inclusion of 5 questions on disability in the 2010 National Census, which had provided the country a measure of approximately 48,243 (4.6%) out of 1,066, 409 people with some form of disability in the country. 7 The definition of disability is: “to have difficulty or cannot do one of the following activities: walking, seeing, hearing, intellectual/mental activities.” Disabilities are divided in 5 categories:

1. With any form of disability

2. Walking

3. Seeing

4. Hearing

5. Mental

This gave the Government and the disability sector current baseline against the global estimation of 1 billion or 13% of people in the world has some form of disability. Total population Timor-Leste8

Timor-Leste

Total No disability

With Any Form of Disability

Walking Seeing Hearing Mental

Total 1.066,409 1,005,728 48,243 20,593 29,488 17,672 13,308

Male 536,390 510,947 25,443 10,731 14,865 8,993 6,652

Female 517.581 494,781 22,800 9,862 14,623 8,679 6,656

The severity of disability in Timor-Leste9 is measured on the Three-point scale: 1. Some difficulty 2. A lot of difficulty 3. Cannot do at all

7 From the Terms of Reference between the DWG and Enablement 2011 8 See Annex 1. Population of Timor-Leste for more details 9 Disability: 2010 Population and Housing Census of Timor-Leste; presentation by Peter Gardner

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Adult literacy rate (aged 15+) for total population and the people with disabilities disaggregated by sex

The literacy rate for people with disability is significantly lower than for the total population, women with disability are the least literate of all. This will need to be taken into consideration while working in the rural communities. Unemployment rate for those with a disability is slightly lower than the total population - 8.3% compared to 10.4%; the opposite is true for younger persons (age 15-24) – 29.2% for youth with a disability compared to 23.9% for all youth People with disability are more likely to be an own account worker or a contributing family worker and are more vulnerable than those who are employees or employers. Most people with disabilities live at home in private households. Around one in five of all households are living with a person with a disability. The challenges are imminent especially now that Timor-Leste is trying hard to develop the country highlighting social capital which includes education, health, social inclusion, environment and culture and heritage as one of the priority in the 30-year strategy the country has presented to its people by the outgoing government with hope that the new government will continue to implement and enforce until results are achieved championing the cause of the people and the community.

PERCEPTION AND BELIEF SYSTEM As in most countries, in Timor-Leste the perception and belief system around disability is still strong and play an important role in the reality of the people. Below some examples as to explain the context in which disability is lived. 1. Man with polio in wheel chair working for a DPO: can come by tricycle to community but if roads too bad then I need to crawl further. People think I have no rights, do not believe I can do anything useful, and see it as a punishment. (Though now due to his work a shift in the thinking takes place) How did he come to his disability? His mother always told him that he fall down and then became paralyzed. He has been explained many times that the disability is caused by polio but he does not believe it, as he does not understand what polio is. (So even when working for a DPO there is no understanding on the disability and cause of disability) 2. Fear that disability is contagious. 3. Understanding that disability is a form of punishment of the parents of the person with disability. A punishment if the parents or mother wants to do something bad to the baby – like kill it or attempt to abort it. Then the baby may be disabled as a punishment to the mother for having such bad thoughts.

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4. It is a very common understanding that a child, or adult with a fever must be kept warm and this practice, especially with children, is seen to contribute to higher temperature, for example in a childhood fever, which may increase the risk of brain damage. Some people are afraid of injections when a baby has fever, because sometimes these injections seem to result in disability in an arm or a leg or a body side. 5. In Indonesian times many Timorese were reluctant to take ill family members to hospital, as hospitals had been associated with unpleasant experiences during the period of occupation. It is believed that disabilities were at times exacerbated by lack of trust of medical care. Some Timorese may still be fearful of this though it is diminishing 6. Do not bath in the river while pregnant, spirit in the water might enter the body. 7. Some pregnant mothers deliberately do not eat enough when pregnant to keep their baby small so the delivery will pose no danger. 8. In Dili, there is a superstition that you should wear or carry a cross with you when you are pregnant, as a „lucky‟ charm of sorts. Also is you walk outside at night and are pregnant, you should carry scissors, a hairbrush and stick a roofing nail in your hair, to protect yourself from bad spirits. 9. There‟s no direct translation of disability in Tetum – ema alejadu, ema deficil, ema deficiente (all negative connotes); disabled people are called special people, people with special needs, stupid people, crippled, handicapped etc.

5. GENERAL FINDINGS AND RECOMMENDATIONS The general findings are divided into four parts:

Outcome of the meetings Outcome Stakeholder meeting Outcome questionnaires Outcome field visit

and in each part recommendations for the training are given.

OUTCOME MEETINGS Numerous meeting had been organized with the following organizations/ stakeholders as to come to a better understanding of the CBR situation in-country: (for more details see Annex 2. Outcome meetings)

ASSERT, TLMI, RHTO, PRADET and Klibur Domin

Ministry of Social and Solidarity, Ministry of Inclusive Education, WHO

UNTL staff

It has to be understood that the outcome of the meetings is based on the individual discussions and personal opinions of the interviewed people. In general, many developments are on the way in the country but the country is young and disability is not always a priority. However the Government is keen in the rebuilding of the country and puts emphasis on the education and building skills of the population, especially the younger population. Timor-Leste has a National Policy on Disability, a National Strategy for Community Based Rehabilitation August 2010,

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Draft Policy for Inclusive Education and has signed the Biwako Millenium Frame work for Action but for most of them guidelines are yet to be developed and policies are not yet enforced.10 Most infra-structures and developments were destroyed during the latest unrests and valuable information has disappeared. The country is overall poor and the people are more concerned about rebuilding their own life and the life of their close family, less willing to work for a common goal if direct own advantages cannot clearly been seen. The position of persons with disabilities is difficult and though there are organizations who are fighting for the rights of the people with disabilities, there is not yet a great impact on the quality of life of the people. Service provision is limited, often not adequate and the people with disability have difficulties to access the services. The people who are in most need of services are11:

People with mental (-intellectual) disabilities

Women with disabilities

Children with disabilities

Most organizations focus on: Physical disabilities

Children with disabilities and development delay

To a lesser extent on: mental disabilities

Hardly integration of organization working with people with visual and hearing

disabilities

Collaboration between organizations can be improved. Though organizations do

refer to each other, there is not a strong sense of common responsibility/ interest in

the life of the person with disability. It is more program/project activity oriented

collaboration.

The competencies working with and for the people with disabilities in most cases

needs to be improved, especially while looking at a broader picture and not the sole

activity of performing a physical assessment or placing the child into the school.

Major disabilities to focus on: CP

stroke, diabetes,

disabilities due to road traffic accidents

Spinal Cord Injury

fractures,

amputations,

brain damage, unknown paralysis

learning disabilities,

mental health

post polio and there are still areas with a lot of post leprosy related disabilities

10 Timor-Leste has signed: 1. United Nation Convention on the Rights of the Child 2. Convention on

Elimination Discrimination Against Women 3. International Convention on Racial Discrimination 4.

International Convention on Migrant worker 5. International Convention on Economy Social Culture Right

6.International Convention on Social and Political Rights 7. International Convention on Elimination against Torture 11 UNMIT report 2006: Rights of the people with disabilities in Timor-Leste

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Major challenges for CBR and the CBR training: CBR worker is expected to be able to solve a huge variety of problems with

very limited knowledge, skills and materials; jeopardizing her/his own position

Resources are scarce, referrals not followed up upon

Accessibility in a broader sense is seen as a major obstacle

People are more theoretical than practical oriented

Though many people work in communities, the understanding on CBR (and

disability) is weak

Future facilitators either do not have understanding on community

development or on disability and CBR.

Facilitation skills need to be developed as opposed to lecturing; adult learning

principles not consciously known

Monitoring and Evaluation is not well developed

Recommendations for the training: 1. Design training with a clear task-activity package for the CBR workers. These tasks and activities should be known by major stakeholders in order to avoid misunderstanding between the different community workers/organizations. 2. Focus on practical skills, as that is what is mostly needed in the communities. 3. Limit the topics for direct implementation (physical rehabilitation and assistive devices) but make the interventions simple and useful 3. Ensure good referral system; at least the CBR workers should know what services are available, (at what costs if any) and where and how to get access to these. 4. Participatory learning, though not commonly used in Timor-Leste, will be the best way to ensure most of what is learned can be used in practice. 5. Facilitation skills, including several forms of communication skills need a strong focus. 6. Design clear filing and monitoring forms, which are easy to use in the field. (Design could be done as a part of the training)

OUTCOME STAKEHOLDER MEETING This 2 days workshop (Annex 3. Agenda Stake Holders Meeting for detailed program) had been organized by the DWG in collaboration with Enablement, to work together with the major stakeholders in Timor-Leste for the future CBR programs. The identified groups were:

UNTL staff

Ministries and WHO

CBR organizations

DPOs

CBR workers

There were 62 participants and as such this exceeded the expectations. Of the participants 21 people were persons with disabilities, 7 female, 14 male. The major objectives of the workshop were:

Stakeholders understand the basics of CBR

Stakeholders reached agreement on the tasks and activities of the CBR

workers in Timor-Leste (Including needed knowledge, skill and attitude)

Stakeholders reached agreement on the training modules for the 1 year

Diploma Training Course on CBR

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The strengths and challenges of the stakeholders in relation to CBR are

determined (Gap Analysis: CBR workers, CBR organizations, future

facilitators)

The workshop was done in a participatory way and the use of Power Point deliberately left out as in most of the remote communities there are no facilities for the use of modern dissemination techniques. Due to the big variety of understanding disability and CBR within the groups as well as the translation, which takes time, we could not achieve all objectives: the modules of the training could not be discussed. Methodologies used during the workshop were:

Group discussion and sharing

Participatory presentation

Mapping

Questionnaires

Mapping

After the initial introduction the workshops started with a short presentation on CBR

and the principles of CBR followed by group work where each group passed the 5

Domains of CBR. Each Domain was discussed in the groups and a mapping of the

services offered by the organizations in Timor-Leste took place. At the end of the

exercise a „total‟ mapping of CBR services was done and it became clear that several

districts are clearly under provided and this will pose a challenge for the CBR

workers in those areas.

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The mapping exercise was followed by the determination on the role and activities of the CBR workers. Each group presented the outcomes and at the end the entire group reached consensus on the following:

Key roles for the CBR workers: 1. Be the contact person for disability in the communities

Do a participatory community assessment (including mapping)

Assess the needs of the people with disabilities in the community

Identify agencies/ organizations in the community and make linkages

Facilitate actions in all 5 areas of the CBR matrix

2. Be the facilitator in the communities Advocate

Educate

Enable

Support

Empower

The people with disabilities in the areas where they would want to achieve their personal goals and include the community in the process. 3. Be the provider of basic rehabilitation services in the home

Assessment

Design treatment plan: short term and long term goals

Provide for treatment: main focus on positioning and home exercises

Provide for assistive devices

Access to information and referral

4. Be the person in charge of Monitoring and Evaluation Monitor and follow up 1-3

Complete administrative tasks as necessary

Key activities for the CBR workers are in the following areas: (Annex 4. Job analysis for detailed information on Information, Knowledge, Skills and Attitude needed to fulfill the requirements)

Perform community assessment

Manage (project) activities

Support rehabilitation in broader sense

Provide for assistive devices services

Organize meetings

Network /liaise with relevant stakeholders

Refer to other quality services

Support in advocacy and lobby for the rights of the people with disabilities

Training Modules: Inclusive Community Development: CBR in Timor-Leste The proposed modules/ package for the CBR training has only been partially the outcome of the stakeholders meeting and not the entire group has been involved in this. As for most of the participants the entire concept of CBR and CBR workers was a new concept, the language spoken a different one (both in literal as also in figurative sense) some of the work was done in small subgroups only. -Community assessment including environmental assessment on accessibility

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Participatory mapping

Accessible environment/infra structure

Accessibility in broader sense

-Community mapping Major needs: of the community and the people with disabilities

Available services and resources

Major stakeholders

Major referral addresses

Location of the houses of people with disabilities

Present habits and beliefs

Mapping major barriers for inclusion

-Community development: Twin Track Approach Role of the Self Help Groups

Role of the DPOs

Role of the CBR workers

Role of the organizations referred to

-Design of a CBR (treatment) plan Short term-long term goals

Exit strategy

-Provide for basic treatment Assessment of the person with disabilities

Design of basic home program contextualized to the living environment

(accessibility)

Follow up on CBR plan

Monitor progress and adjust plans

Information sharing

-Provide for assistive devices services Assessment on the needs for assistive devices

Referral and follow up (including monitoring)

Basic repair and maintenance of the devices

Production of basic devices, including basic educational equipment

Provide for guidance on home adaptations

Ensure information sharing on assistive devices

-Refer and follow up Referral to appropriate addresses where services are ensured

Follow up activities concerns the referral addresses as well the persons with

disabilities

Monitor progress and take action where needed

-Communication and networking Organize meetings Message design and message dissemination

Counseling different groups

Mediation between groups

Liaise with other groups and follow up on that

-Training Design/adapt training

Facilitate training/ workshop to different groups

Evaluate training

Follow up activities

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-Advocacy The rights of the people with disability

Facilitate the implementation of the rights

Support people with disabilities in „claiming‟ their rights

Simple stakeholders analysis, including their working area and -focus

Network with DPOs for follow up

-Management Organize community meetings

Collection of data

Analyze data

Set up self help groups

Small scale budget planning

Report writing

-Research and report writing Collect data and use case studies

Gap analysis After the identification of roles, key activities and basic ideas around the training modules three types of Gap Analysis were performed in five groups 1. Gap analysis of the CBR worker 2. Gap analysis of community development curriculum and CBR training modules 3. Gap analysis on available provisions in Timor-Leste The Gap analysis as outlined in point 2 and 3 differed from the objectives and was adapted following the input from the groups. 1. Gap analysis of the CBR workers in 3 groups: the CBR workers, the DWG and DPOs. The purpose was to come to an understanding on WHERE ARE WE NOW and WHERE DO WE NEED TO BE, with the major barriers that could be faced in the process. The combined outcome can be seen below.

Group Present Performance Blockings Desired Performance

TNA for CBR workers

CBR DPO DWG

(Early) identification Rehabilitation Equipment support Referral Follow up (more quantitative) Training/ facilitation Networking Organizing meeting Monitoring Advocacy Remarks: Present performance is theoretically correct but in practice most of these points are non-satisfactory

Minimum concept Stakeholders relation Stigma Lack of participation and inclusion No transportation Insufficient resources for people disability in area rural Financial limitations Communication

– no sign

language & no

braille

– different

language in

country

Geography

Assessment and early identification Accessibility Home treatment plan Basic assistive devices Monitoring Follow up (qualitative) Referral (effective) Removal of barriers Socialize – 8 principle (UNCRPD) Capacity building -Training for parents, family Communication skills: -Simple languages -Counseling and motivation Remark: the point: removal of barriers-8 principles

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Attitude – family, community and people with disabilities Remark: no mentioning of own attitude

(UNCRPD) is excellent and should be addressed in a simple but clear way

It became clear that it was difficult for the people to grasp the idea to explore the major differences between what is already present and what is desired from the new CBR worker. Time was limited and it was realized that for certain processes more time will need to be planned in. Looking at the outcome most of the issues are the same where there is a “quality” difference for certain aspects such as assessment, rehabilitation, assistive devices, referral and advocacy. The major insight was that the services will need to become more home based, practical oriented where whatever the CBR worker is doing there should be a change in the quality of life for the person with disability visible. The CBR program should have a clear plan and an exit strategy. The referrals should shift from problem pushing to problem solving. 2. Gap analysis by the UNTL staff on Community Development Modules compared to the future CBR modules. The goal was to make a comparison between the existing curriculum for the community development training and what would be needed for the CBR approach. The outcome focused on the following issues:

Environmental information and the inclusion of accessibility

Human resources and time availability for the expansion into CBR

Lecturing theory as opposed to facilitation practical oriented CBR

The UNTL staff is aware that accessibility is an important extra topic and that the way of working will need a shift. 3. Gap analysis on available provisions by the representatives of the ministries and WHO. The goal was to understand better which provisions are already offered by the Government, for whom and how much. Do all people who are eligible have access to these provisions, if NO, what could be the reason? During the discussion no consensus could be reached and no clear mapping of existing provisions could be made. This will need to be followed up on by the DWG as these are important provisions for the people with disabilities and the CBR worker need to know about these. Recommendations for the training: 1. Active participation, adult learning cycle, emotional alertness as major methodologies in the training will be essential for a more effective learning. 2. Facilitation skills are relatively new as opposed to lecturing/ teaching and needs strong attention. 3. Practical skills are more important than the theory: HOW, WHAT and SO WHAT. Home-based services are in high demand 4. Integrate Community Development Modules with CBR modules 5. Use of case studies and assignments in between for problem solving skills 6. Make the UNCRPD and the CBR matrix/ principles practical 7. Focus on communication (message design, message dissemination, discussions) and counseling skills, including mediation.

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8. The role, the task and activities of CBR workers should be clearly understood. Training should focus on the competencies needed from the CBR worker and focus on ‘What is essential to know’

OUTCOME QUESTIONNAIRES For the TNA three questionnaires have been developed as to collect as much as possible data from as many as possible angles. The questionnaires have been send to the DWG in advance for translation in Tetum. After translation the questionnaires have been send to the perspective people for follow up actions, where it was understood that the CBR workers would need support from the managers/CBR coordinators for answering the questions. The questionnaires developed for the TNA were: 1. Questionnaire for CBR organizations (Annex 5) 2. Questionnaire Training Needs Analysis UNTL staff (Annex 6) 3. Checklist Training Needs Analysis CBR professionals (Annex 7) This part will only show the most relevant outcome of these questionnaires. For more detailed information please refer to the Annexes. Outcome 1: Questionnaire for CBR organizations Feedback was received from following organizations: ASSERT, Klibur Domin, TLMI, PRADET and Clinica Uma Ita Nian where some organizations filled out more than one form since some people had more experience and knowledge in specific areas. This form was used to get a better picture on the actual situation on disability and CBR in Timor-Leste.

All domains of the CBR matrix are covered by the organizations with most focus on Health and Education. Most organizations are implementers.

The major disabilities in the target areas are: CP, polio, Amputation, Blindness, Spinal Cord injury, club foot, deafness, deformities and intellectual delay

Major causes are disease, birth defects, accidents and violence including domestic violence.

Major difficulties of people with disabilities are: o Poverty/ economic burden o Mobility/ accessibility limitation o Discrimination/ non-normal citizen o No financial or personal support system

The major difficulties within CBR (rehabilitation) programs gave such widespread answer that a common understanding could not be filtered out however the following were mentioned more often:

o Accessibility in broader sense o Stigma and discrimination o Community motivation and self motivation o Limited services (especially mental health) or systems not yet in place o Lack of financial and human resources

The main actors in the field of disability are seen as the Government and political parties, donors, (I)NGOs, Community leaders and family members. No difference was indicated for the remote areas.

Accessibility of physical environment, transportation and means of communication are major issues. Other factors that have a major influence on the accessibility of services are:

o Lack of quality health and referral services nearby o Socio-economic situation of the person with disability o Remoteness and geographical barriers

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o Presence of belief systems and stigma o Standard of living remaining the same

The most effective training methodologies for the CBR training Course are: o All forms with active participation, practical skills training o Q&A, Quiz, use of pictures o Case studies o On the job training/ field exposure o Step for step remedies o Simple, straight forward o Assignments to bring into practice what has been learned

Major needs of the people with disabilities are perceived as being: o Access to basic needs and health care o Economic opportunities o Education o Rehabilitation o Social

Outcome 2: TNA UNTL Five questionnaires were returned, 4 filled in by male staff, 1 by female staff in functions ranging from lecturer, to vice-dean. The major scope of the work by the staff members is: 1. Material preparation and lecturing 2. Guidance for students in writing proposal and thesis 3. Conducting research Whereas for the vice deans more organizational and coordinating and supervising activities are a part of their responsibilities.

UNTL and the staff have no experience with CBR and disability though modules from the community development training could be incorporated in CBR modules.

Trainings received are leadership, research methods, census reading etc but no specific link with disability

Subjects taught by the staff range from: o Communication and Development o (Time) Management and organization o Gender and Development o Social Research Methodology/ social statistics o Research methods of Administration/ philosophical administration o Leadership o Introduction on economic science o Project management

Subjects staff would feel comfortable in when facilitating the CBR training are:

o Development Plan o Communication skills o Community empowerment o Research participation o Organization-team building o Leadership o Management-effective communication

Possible organizational gaps for the CBR Diploma course could be: o Teaching times in university and proper guidance for students o Processes, style and culture o Poor knowledge and reflection on the people‟s life and therefore

analysing how to resolve by trainings and improve the people‟s life Gaps could be solved by:

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o Clear strategy and guidelines for the CBR Diploma Training Course o Strict time management o (On the job) Training for the staff and motivation for the new directions

to take o Exposure to the field

Concerning the skills in facilitation and training: o Staff has skill in lecturing, teaching but are not familiar with facilitation

and the adult learning cycle o Staff feel comfortable in lecturing, mentoring and working in small

groups and feel all these methods could be effective in the CBR Diploma Course as well

Outcome 3: TNA CBR professionals Only of 3 organizations (ASSERT, Klibur Domin and TLMI) 10-12 staff members filled out the questionnaire. The questions were not always filled out completely and only little feedback returned on the „open questions‟. Major challenge was that the people did not receive proper instruction concerning the form, nor sufficient support during the process and many staff members were therefore not able to answer adequately. Many of the staff mentioned that they only received the form the last moment and had not enough time for the questionnaire. This is regrettable, as an important source of information has now not been tapped in sufficiently. General information:

There are currently more male (83,3%) then female (16,7%) CBR workers, one organization works only with male CBR workers

Most of the staff has had a form of training, but training did not exceed a 2 week period

Knowledge on environmental aspects, the number of beneficiaries and the types of disability are limited

All domains of the CBR matrix are covered by the total number organizations, where the individual organizations focus mainly on 1 or 2 domains. Most CBR workers could not or only limited specify what the activities within these domains are.

Beneficiaries are visited regularly, though some feel that accessibility and proper communication is a challenge.

Major barriers to access services as perceived by the CBR workers are: o Information of location of people with disability o Long distances and bad road conditions o Information dissemination o Financial limitations

Identification and assessment of people with disabilities (based on the CAHD training material that formed a bases for the CBR training in 2006-2007)

Disabilities that are best known (score 8-10) are: CP, Stroke, Polio, amputation, weakness, stiffness and contractures. Knowledge is for most of the CBR workers basic and they feel they can do a simple assessment but many face serious challenges in the treatment.

Diseases known are TB, leprosy, HIV/Aids, epilepsy and diabetes and only TLMI staff feels confident to assess and treat people affected by leprosy.

All other types of disabilities are a major challenge for most CBR workers where the visual impairment can be recognized best by TLMI staff.

Provision of assistive devices

ASSERT as the organization in country for assistive devices in general showed best knowledge on assistive devices however the practical aspects

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can only be covered well by 1 staff member of the organization. In general there is a clear lack in knowledge and skills for the provision, monitoring and basic repairs on assistive devices.

Knowledge and skills for follow up and financial support is limited. Some staff they are very well capable to motivate the people in the use of

assistive devices. Remark: thus is in contrast with the information obtained from various

discussions and meetings where people are often frustrated by the non-motivation of the people with disabilities concerning the assistive devices. The time between production of devices and pick up (if ever the devices are picked up!) is often long and often the devices seem to get forgotten.

Establishing and using a referral system

The knowledge especially on services outside the area of physical rehabilitation is limited and poses a challenge for the CBR workers.

The costs of most referral services are not known and hardly any follow up is done after the referral.

Provision of training to family members and other to support the person with disability Remark: the answers show a huge variety and it became not always clear in how far the

questions were clearly understood. Some organizations feel they give regularly-always support activities to the

families were other say not al all. Home based exercise is shown to the people at home by some but hardly

anybody manages to involve the person with disability in daily activities or improve her/his home based situation

Monitoring and evaluation the situation of the person with disability

A filing system is not used by one organization. In general people seem to collect some data but do not have adequate

strategies and forms for the monitoring and evaluation. Recommendations for the training: 1. Barriers for people with disabilities to access services need to be addressed with creative, out-of-the-box problem solving thinking 2. As there is a lack of quality services in the country, a solid referral system will need to be developed with useful and effective referral services (even if limited) 3. Desired training methodologies next to some lecturing are participatory methods, practical skills training and the work with case studies and real situations in a simple and straight forward way 4. There is some knowledge about diseases and disabilities but most people lack the practical skills 5. Follow up activities with a clear role for the CBR worker needs to be formulated 6. Home adaptations and home support are important learning points: design of non-verbal home exercise programs 7. Motivational skills are needed and own motivation will need to be addressed as well 8. UNTL staff does feel comfortable to lecture in many possible modules but will need major developments in the area of Disability, CBR, facilitation skills and adult learning principles

OUTCOME FIELD VISITS One field visit had to be cancelled due to heavy rains and the too high risk of landslides and inaccessible roads. (something to keep in mind while working in the rainy season) This was unfortunate as the eastern part of the country (perceived as the most Timorese of Timor-Leste) could now not been assessed. The other visits

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were done in Oecussie and Aileu. The information obtained from the field visits is described and could be used as case studies for the training. The outcome reflects the impressions from the discussions with the people with disabilities, the staff working there and family and community members. These are personal stories and might not reflect the intentions of the organizations working in these areas. (see Annex 8. Outcome field visits: Case studies) The efforts of the people working in the field are not to be under-estimated. The circumstances of work are often difficult, the understanding for their work limited and the interest from the community often non-existent. In some cases the CBR workers are young and need to be able to address difficult issues to the Village leaders, head masters and other persons in higher and influential positions. Major reflection points are:

The concept and the principles of CBR are not really known and service

delivery is the major approach used.

CBR workers are often overwhelmed by the work they need to do with their

limited capacities. People with disabilities and their families often have high

expectations and CBR workers cannot offer the services, which are

(perceived) expected from them.

CBR workers are capable to perform a very basic assessment and could

clearly benefit from further training in this. Combining the assessment with an

environmental assessment is challenging and needs to be incorporated in the

training.

People with disabilities are referred to services which most of the time remain

inaccessible for them: distance, finance, duration of travel, time away from

home/work leaving the impression behind that community work (CBR) is not

effective.

Follow up services are for most of the people not satisfactory as either

services provided for are not acceptable (harsh treatments in hospitals, low

quality devices which cause physical problems, waiting a year or longer for

the services) or not adequate for the person. The life of the person with a

disability is most of the time not really taken into consideration.

Self Help Groups do benefit individuals who are a member. Often the benefits

do not reach the persons with a disability sufficiently (in case a family member

take the place in the Self Help Group) It is a challenge for the CBR worker to

identify and address these issues.

Concrete support activities, practical skills and communication skills are in

high demand for the CBR workers and would be beneficial for the people with

disabilities.

Collaboration, clear agreements between other interest groups should be

improved to achieve better results for the people with disabilities.

The church could play an important role in the identification, referral and

follow up of the people with disabilities. The church has a respected position

in the country, is very well connected in the communities and already

undertakes many activities for the people, including the people with

disabilities.

Recommendations for the training:

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1. Basic but strong foundation in CBR and what CBR means in practice: HOW and WHAT 2. To perform basic assessment taking the life and the environment of the person with disability into consideration 3. Make basic CBR plan 4. What are effective meaningful referrals and refer 5. Follow up on referrals and treatments, including assistive devices 6. Good linkage with other organizations and the church groups (keeping in mind other religions as well) 7. Good communication with persons with disability, their family members and community

6. CHALLENGES The challenges for the upcoming CBR developments can be divided into three groups: Challenges for the future CBR workers, Challenges for the future CBR facilitators and Challenges for the future CBR training Challenges for the future CBR workers: 1. The selection criteria for the first batch of CBR workers to be trained are not yet clearly defined and needs to be carefully planned as not to put too high academic demands on the people. 2. The position the future CBR workers are going to take in the communities is not clear. There are several types of community workers from different governmental departments, (I)NGOs and other organizations and we need to take the different responsibilities and accountabilities serious. 3. The role and tasks of the CBR workers need to be realistic (most of them now are overwhelmed) and a good supervision/ coaching system should be in place. 4. There is a lack of female CBR workers and working in remote areas might be challenging for women alone. This needs to be further explored. 5. As long as CBR workers are paid by (I)NGOs there is a risk of the sustainability of the CBR services. Challenges for the future CBR facilitators: 1. Major challenge is the change from lecturing to facilitation and the time people are able to invest in the change process. A clearance from the Dean and Department on this change needs to be given. 2. The training should get a clear position within the Community Development Department and people should be able to take pride in this new direction. The department needs to take ownership of this program. 3. Without accreditation of the Training Course it will be difficult to keep up the motivation of the UNTL to continue with the Training Course beyond the first batch 4. Non-UNTL staff will be a part of the facilitation team and could spark some tension Challenges for the future CBR training: 1. The CBR concept/ strategy needs to be clearly understood and a common agreement reached. 2. CBR is more than working in a community and stresses true participation of the people worked for/ with. The same principle counts for the CBR training course to be developed. To really address the needs of the CBR worker, collaboration with them should take place. To really address the needs of the people with disabilities, they should be involved as well. 3. Training would need to have a strong follow up support, especially when working with people with limited knowledge and skills who are facing huge challenges in the field. (at times such severe forms of disabilities with such limited means of

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interventions, that even the very well experienced people have difficulty in services to be provided) The supervisors require training themselves on how to perform (motivational) follow up that facilitates new learning and support. 4. Training packages in theory can look very good, but the methodology, the practical part of the delivery of trainings by the facilitation team will need more attention. 5. In order to understand if the training will have the desired effect, monitoring and evaluation tools should be developed for measuring the qualitative and quantitative outcomes. Since the working area for most is remote and difficult to reach, this might hamper the monitoring and evaluation activities as well.

7. FINAL REMARK The development of this training course, the acceptance of CBR as the right strategy to enable people with disabilities, especially those with limited financial resources, access to services is a huge step for Timor-Leste. The initiative taken by the DWG in collaboration with the UNTL could be the first of many exciting developments and I truly hope that we all will be able to contribute to a better quality of life for the people with disabilities. This training and the follow up activities can in a way been seen as a pilot, where we will have to accept that not all people will be able to profit from this development in this first stage. However, I am confident that we will work towards a Timor-Leste where ALL people with disabilities will have a better access to the services they have the right to. Beijing, May 31-2012