Assessment of the Project‘Setting up a Community Based Rehabilitation model for children and adults affected by the polio outbreak and other children with physical disabilities’ in Tajikistan

FINAL REPORT

Submitted by Sue Mackey

UNICEF, Tajikistan

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November 2011

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This report has been commissioned by UNICEF Tajikistan to Sue Mackey, and individual consultant on disabilities.

(REF. NO.SSA/TADA/2011/00000943)

The opinions expressed in this report are those of the author and do not necessarily reflect the policies or views of UNICEF or its partners. The text has not been edited to official publication standards and UNICEF accepts no responsibility for errors.

Extracts from this report may be freely reproduced with due acknowledgement.

For more information, please contact dushanbe@unicef.org

Cover Illustration: This picture hangs in the Kishti Early Years Centre at Baby Home 1 in Dushanbe. The Kishti Centre is run by Ishtirok (Disabled Women’s League) in partnership with HealthProm.

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Table of contents

Summary of Findings 3

1) Introduction/ background 7

2) Methodology 7

3) Findings 8

4) Effectiveness, Efficiency, Sustainability 23

5) Conclusions 27

6) Recommendations 27

7) Annexes 31

1. List of persons interviewed2. List of documents reviewed3. Final timetables 4. Topic guides used for data collection5. Consent Form6. CBR Project Log Frame

Acronyms and Terms

UNICEF - United Nations Children’s FundCBR - Community Based RehabilitationPMPCC - Psychological Medical Pedagogical Consultation CentreMoH - Ministry of HealthMoE - Ministry of EducationMLSP - Ministry of Social Protection and LabourINGOs - International Non-Governmental OrganisationsHI - Handicap InternationalOpM - Operation MercyOPM - Oxford Policy ManagementNOC - National Orthopaedic CentreWHO - World Health Organization

WASH - Water, Sanitation and Hygiene CWD - Children with disability

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Summary of Findings

Introduction:Following the Polio Outbreak of 2010, UNICEF in partnership with the Ministry of Health and together with Operation Mercy and Handicap International initiated a Community Based Rehabilitation Project for those affected by the polio outbreak and other children with physical disabilities in the 24 most afflicted districts. The project had two main objectives: 1) Persons affected by polio paralysis get quality physical rehabilitation services to decrease the disabling outcome of the disease and are accepted into mainstream society; 2) Polio rehabilitation is used as an example for inclusive community-based development of services for people with disabilities; reducing barriers to access to local education, social and health care for all children with disabilities. The project has been led by the Ministry of Health (MoH) from the Government side, with the involvement of the Ministry of Labour and Social Protection (MoLSP) as well as Ministry of Education (MoE). The project has been implemented since June 2010, and will end on 31 December 2011.

Methods:The methodology for collecting and analysing data for the research was mainly qualitative but also included quantitative information from the progress reports, monitoring-mentoring data and from the records of the concerned parties implementing the project. Qualitative approaches included semi-structured interviews, focus group discussions and observations made during the filed site visits.

Conclusions on the Findings:The requested format for presenting the findings was to use the ‘Planned Results and Activities’ structure of the project log frame (see Appendix 6). Thus the ‘Expected Results’ are highlighted in numerical sequence, together with the findings and lessons learnt from the evaluation reported under each section.

The overall conclusion of the findings was that a considerable amount of work has been accomplished in the short 15 months duration of this project to achieve the expected results and activities to a large degree. The project was ambitious in scope and in the number of target groups it sought to reach, across different sectors. A number of significant achievements have been made in reaching the majority of affected children and young adults with polio needing rehabilitation and assistive devices, as well as other children with physical disabilities.

The intended number of trainings and educational material were completed and most of the Support Rooms established and equipped. A weaker aspect has been in the adaptation and inclusion work in schools. Entrance ramps were constructed just in Khatlon at the time of this assessment, whilst other environmental barriers remained throughout the target schools. There are mixed results in fitting the relevant orthotics and mobility aids. Although most of the children with polio listed did receive their orthosis eventually, the delay had caused contractures to develop or children had already grown out of them. The system for referral and provision of other mobility aids such as wheelchairs, walkers and crutches did not always work effectively, and much work needs to be done together with Government departments to improve the referral process.

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Although a large number of mid-level Government health, education and social workers attended up to three training workshops, their level of skills is not sufficient at this stage to deliver quality rehabilitation services. They lack the necessary training, skilled supervision and the programme stayed mainly at district level. More work needs to be done to increase coverage to reach families at village level. There was universal appreciation and enthusiasm from all sections of the Government, from ministerial to district levels about the work accomplished by the CBR project. It has raised awareness and encouraged inter-sectorial approaches, which is quite an achievement in such a short space of time.

The project activities had targeted three of the five main areas of CBR, namely; health, education and social sectors in response to an emergency polio outbreak. Areas of livelihoods and empowerment were beyond the scope of this project. The possibilities and potential of CBR has been demonstrated and a window has been opened. It is important now to build on this and not to lose the momentum that has been reached.

Recommendations (abridged – see full version in the relevant 'Recommendations section at the end of the report)

1. Capacity building of rehabilitation professionals:

a) More qualified professionals such as; physiotherapists, occupational therapists, orthotists, preferably with paediatric experience are needed to work alongside Government workers, until these professions are upgraded within Tajikistan, to include community paediatric rehabilitation skills.

b) The type of training required varies from degree level therapists, to a 6-12 month model of child developmental therapist training,1 to a 3 month CBR mid-level worker training model.

c) Exchanges within country to good models of child therapy practice would be very helpful as well as exchanges to other countries in the region from policy makers to CBR project workers.

2. Strengthening Rehabilitation systems:

a) Home visits are currently not sufficient to reach villages and the majority of parents do not manage to attend support rooms regularly. A more systematic, coordinated approach between the different sectors would help to cover the gaps more.

b) National Orthopaedic Workshop is a crucial resource for physical rehabilitation but needs strengthening at all levels, including management as well as technical skills. An overseas orthotic expert will continue to be needed periodically.

c) A system for referral, fitting, distribution and review of assistive devices should be drawn up by all parties involved in these processes, with simple flow charts.

1 Child developmental therapy is a practical course, that entails aspects of occupational, physiotherapy, speech and language, early development and play therapy, designed in a number of places in India to bridge the paediatric skill gap, especially for working with chronic disabilities such as cerebral palsy children.

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d) Ideally the four regional orthopaedic workshops could be strengthened to become more autonomous and better serve the population in the districts.

e) The mobile clinic should have increased capacity to cover more districts and where necessary stay longer to complete fitting as well as measurements.

f) Wheel chair supply is inadequate and does not meet the needs of younger children. Changes are needed in the type of wheelchairs currently imported, together with trained staff who know how to assess and measure children correctly. An alternative method of assembling wheelchairs in country could help to alleviate the problem.

3. Community Outreach

a) Support room staff need further paediatric training so the rooms could start to function more on a child development model, with group activities where parents have greater involvement in their child’s rehabilitation.

b) More children with other types of disability should be identified and encouraged to attend. The majority of these conditions are likely to be cerebral palsy and intellectual delay, with long term chronic and complex needs, so staff will need specific training on how to work with these type of children.

c) Community support needs to be strengthened as most families are not receiving services at village level. In the short term, this could be provided by the CBR Support Groups, but a longer term project would be to strengthen and develop more parents’ self-help groups.

4. Inclusion and Schools

a) School adaptation – more than a ramp. In future, sufficient funding should be available to make at least target schools properly accessible and adapt not just the front entrance ramp but other areas in schools like classrooms, doorways and toilets etc.

b) The sanitation in both the schools and health centres we visited in the project sites was very poor. WASH projects are desperately needed across the project areas and probably the whole country.

c) Inclusive Education resources are freely available from the internet and these could be downloaded and distributed to bridge the gap until more training is available to teachers. As most are in English, they would need translating and some adaptation first.

5. POVERTY was the most common problem cited for families of children with disability and large numbers require social assistance, so the role of social workers should be recognised more in CBR programmes

6. Involvement of DPOs in future initiatives is important to alleviate poverty in the long term, if they can be empowered to foster community development and include parents of children with disabilities.

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7. A National Rehabilitation Plan and Joint Working Groups for rehabilitation across sectors are essential for future cohesive development, involving the three key Government sectors of health, education and social protection, as well as UN agencies and INGOS.

8. CBR Network to be strengthened nationally so that the various CBR actors in Tajikistan coordinate their efforts and share expertise more. In the longer term, this CBR network could expand to include national stakeholders such as local NGOs, DPOs, and Associations of Parents who have children with disabilities, as well as government agencies in order to promote wider community development.

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1) Introduction/ Background

Following the Polio Outbreak of 2010, UNICEF in partnership with the Ministry of Health and together with Operation Mercy and Handicap International initiated a Community Based Rehabilitation Project for those affected by the polio outbreak and other children with physical disabilities in the 24 most afflicted districts. The project had two main objectives: 1) Persons affected by polio paralysis get quality physical rehabilitation services to decrease the disabling outcome of the disease and are accepted into mainstream society; 2) Polio rehabilitation is used as an example for inclusive community-based development of services for people with disabilities; reducing barriers to access to local education, social and health care for all children with disabilities. The project has been led by the Ministry of Health (MoH) from the Government side, with the involvement of the Ministry of Labour and Social Protection (MoLSP) as well as Ministry of Education (MoE). The project has been implemented since June 2010, and will end on 31 December 2011.

The project partners wanted to document the experience gained, learn from the achievements and shortcomings, understand the reasons behind them, and to build on them to ensure sustainability and future scale up of the model. This external assessment was foreseen from the beginning of the project to feed into the policy dialogue towards a national CBR plan with the Ministry of Health and the Ministry of Labour and Social Protection as well as contributing to a lesser degree to the implementation of the new Inclusive Education policy by the Ministry of Education.

2) Methodology

The method for collecting and analysing data for the research was mainly qualitative but also included quantitative information from the progress reports, monitoring-mentoring data and from the records of the concerned parties implementing the project.

Data collection methods included:

Desk research: An analysis of available information: Project proposal, results framework, publications made during the project, progress and monitoring-mentoring reports, etc. (see list of documents reviewed in Annex 2)

Field observations: Site visits were made to selected locations in the two CBR project target regions, where two different INGOs were the implementing agencies: Operation mercy in the DRD and Handicap International Federation in Khatlon. In addition, since the DRD and Khatlon Regions differ in their governance structure, and the availability of various resources, two sites from each region were chosen.

Interviews and focus group discussion with key informants: A combination of semi-structured interviews and focus group discussion were held with key informants in collaboration with UNICEF and its implementing partners. Five Topic Guides were designed for the separate groups of: Government Ministries, INGOs, CBR project workers, parents, children (see Annex 4). The main groups covered are listed below:

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o Key informants from relevant agencies/partners

o Government Ministries; Health, Education, MLSP at both national & district levels

o Project management staff from UNICEF, Operation Mercy, Handicap International

o Project field staff & CBR activities.

o Rehabilitation centres - support rooms, orthotic workshops

o Children and families

o Community stakeholders – DPOs, social networks

o School staff & children where children have been included

A consent form was drawn up and translated into Tajik so that respondents could be informed of the project purpose, confidentiality and their withdrawal at any stage without adverse effects to their services. Written consent was obtained before focus group discussions and for permission to take photographs (see Annex 5).

Interviews were held with focal persons from the three line Ministries (MoH, MoE, MLSP), local authorities, selected staff of the support groups and selected participants at the trainings. To ensure voices of the beneficiaries were heard, parents and children were also interviewed whenever possible, either in a focus group setting or individually. (see list of persons interviewed in Annex 1)

Sampling: Some randomisation where possible was planned to take into account balance of: gender, geographical location (urban / rural), age bands, length of time services initiated. However, given the natural field setting, time frame and logistics, for the most part the sampling was opportunistic and purposeful, but did take into account all of the criteria planned.

Observations: took place in the following settings: o Support roomso Family homeso Schoolso Orthotic workshop-Dushanbe

3) Findings

Following the evaluation feedback session at UNICEF, the requested format for presenting the findings was to use the ‘Planned Results and Activities’ structure of the project log frame (see Appendix 6). Thus the ‘Expected Results’ will be highlighted in numerical sequence, together with the findings and lessons learnt from the evaluation reported under each.

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Result 1: The general population, and especially parents of children affected by polio or AFP (acute flaccid paralysis), have access to correct information on the long-term effects of polio and the correct rehabilitation

The activities carried out to meet this goal were to design a media/TV campaign and educational materials. The scripts for the TV media campaign were completed some time ago but gaining full agreements and permission from the various parties has delayed production. Nevertheless, it is planned to broadcast the programme by the end of December this year.

The educational materials have been successfully developed with 50 posters and 6,000 brochures on managing polio distributed. These have been well received, with strong approval expressed from the Ministry of Health (MoH).

The parents we met or visited appeared to understand how polio had affected their child and had received the relevant information. This finding correlates with the summary of the first Operation Mercy Monitoring and Mentoring report;

‘Overall parents and families effected by polio, the majority know the facts about polio and work on physical exercise with their child” (dated April-June 2011).

However, not all parents had received the brochures and it was apparent that a number still thought their child would regain normal muscle strength and fully recover again, hence there was reluctance in some cases to accept orthoses or apply for a disability card. Although parents had been taught exercises, it was questionable that they always understood and knew how to apply them effectively, especially where techniques were new to project staff too.

The combined monitoring statistics from both Operation Mercy and Handicap International collected over a period from March-June 2011, show that a large number of the general population were targeted in the information campaign (see Table 1). However, the figures included just 5 social workers. In addition, the knowledge of some of the community leaders and teachers on general issues related to polio was said to be lacking.

Table 1 Combined Operation Mercy & Handicap International monitoring data

Population Group Total number reached

Parents of child with disability 329Health care workers 291Community leaders 196Parents of non-disabled children 788School staff 484Non-disabled children 3,152Social workers 5

The combined 1st and 2nd round monitoring report figures from Handicap International states that in total 5,696 received information about polio. A comparison between the 1st and 2nd rounds is made in the report stating;

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“The comparison of data show that nearly the same percentage of parents in both monitoring periods regularly doing exercises with their children, but their knowledge on polio and its sequels increased. As a result parents and…. relatives less rely on taking medicine, injection or visiting local healer, instead they prefer doing exercises and massage. Only 8% mentioned taking medicine as main treatment for polio”.

Result 2: Acute level health workers directly dealing with affected families have basic knowledge about CBR principles and range-of-movement exercises and can train others

Service providers had been trained and received information on polio and rehabilitation. They were aware of basic rehabilitation techniques, particularly range of movement (ROM) exercises and parents also had some idea too when asked to show us. In general, it still tended to be passive treatments, massage and wax that was favoured by staff as they feel comfortable and used to these. Rarely was there evidence of active, functional activities, except in the Khatlon (Psychological, Medical, and Pedagogical Consultation Centres (PMPCC) visit, where a VSO volunteer funded and placed there by UNICEF had been working alongside the Centre staff for a year. Knowledge of correct orthoses was patchy and both health care workers and some parents were not familiar with their use.

It was encouraging that health care workers were aware that CBR principles not only involved medical treatments but that school and inclusion in the community in general were important. That this message had been transmitted was apparent during interviews at all levels, from Government officials to nurses in the support rooms.

Training in the community: Those relevant staff involved in the CBR project across health, social protection and education sectors were all asked about undertaking this aspect and the majority strongly replied in the affirmative. There was great variability in the process and extent of training undertaken by them in the community, as it ranged from informally at community events, during normal community work i.e. family doctors or nurses visiting families, to formal training sessions at health facilities or school PTA meetings. Thus it is not possible to give a definitive answer to the total number trained, but certainly the seeds of increased CBR, disability knowledge and awareness had been sown in the community.

Result 3: Mid-level, district and community health workers, district and community social workers, teachers and school directors, as well as Red Crescent volunteers2 gain good knowledge of CBR principles and rehabilitation techniques to use with people affected by polio

This training was completed by June 2011 with the district community training sessions and two ‘training of trainers’ workshops (TOT 1 & TOT 2). The 45 two day seminars that were planned and held, often needed to be shortened to 1 day for logistical and attendance factors.

However, the partner INGOs realised overall that the training was not enough, particularly for social workers (staff of Social Assistance at Home Units), who were not reached in the first year and many were not prepared for their new role of now working with children instead of the elderly at home, which they started doing only since 2010. There is a great need for

2 The Red Crescent organisation pulled out of the project early on.

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increased coverage as well as more training sessions, as the workshops were only 1-2 days and participants largely did not come from a rehabilitation background.

The CBR project was strengthened through the Operation Mercy Tool Kit initiative, (flip chart, posters, leaflets, doll etc.), which were successfully produced & distributed after approval from the MoH and translation into Tajik. It was well accepted and proved to be very useful. In addition, the WHO mid-level manual on working with cerebral palsy children was translated into Tajik and shared with the support room CBR project workers.

The monitoring and mentoring aspects of this section of the project proved to be a complex and challenging undertaking. It involved chiefly the district doctor-trainers who had attended the TOT workshops. Seven districts were covered in DRD, whilst in Khatlon, this activity was carried out in 15 districts by 15 district trainers, with the support of HI project manager and a VSO physiotherapist, visiting 54 villages. An important issue is the subsequent management of this data by the Government, how it will be collected, analysed and acted upon in the future.

Most of the children live in remote areas where there is poor transportation, so that often only two or three children could be visited in a day, or an overnight stay was needed. Consequently it could take more than one visit to complete the process and frequently there might only be one child listed in a village. Sometimes parents were not available or had refused to give phone numbers (one person in DRD district thought he would be bothered every day). So it proved to be a time consuming process, with the length of the monitoring depending on the number of staff who could be utilised.

Although a MoH Regional Director noted that this monitoring work was part of the doctor’s responsibility, and in theory there was a hospital ambulance or local authority vehicle that could be made available, this was not generally the case on the ground. Therefore a budget had to be set aside from the project to cover these costs. This could prove to be a barrier in the future after the CBR project ends in December 2011.

Result 4: Creation of a structure of Mid-level disability, health and education workers – family support.

The aim was to establish a child disability Support Room in each district, where staff from health, education and social sectors could function as ‘mid-level’ disability, health and education workers. Support Groups of key stakeholders would then be formed, usually of a nurse, family doctor, social worker, teacher and parents. The support rooms would be supplied with basic and locally available, child development equipment by Operation Mercy, and provide a focus of support for families who had a child with disability. Mostly they were situated in a health facility but other locations such as a special school for the hearing impaired were also sought.

To a great extent these goals were achieved and the majority of those rooms and support staff are in place. Space had been made available and Government staff allocated to support the children who come. The intention was also to carry out home visits as it was mostly just the parents living nearby or within an hour away who were attending.

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Part of the terms of reference for the project assessment field site visits was to make observations and report notes on particular aspects relating to the Support Rooms related to Expected Result (4). Hence in the following section, these aspects will be listed in turn with the points to check in blue, together with the findings.

SUPPORT ROOMS

Have the support rooms been established? What are their functioning capacities?Establishment of the support rooms is not quite 100% but as mentioned above, the majority are established and equipped, with a varied functioning capacity. It is still early days as on the DRD field visit, support rooms only started from July 2011 and in Khatlon, from around Oct 2011, where in Rumi, they had only ran on three Saturday mornings.

Number of support rooms established

In DRD, 7/9 have been set up with the site location finalised in Rudaki, but one site further North yet to be decided. In Khatlon, 11/13 district support rooms are established and two other districts have a PMPCC structure which can function as a child development centre. These have more rooms and child specialists, with more sophisticated equipment, already supplied by UNICEF.

Alijon 2 years with polio attends Sharinav support room

Overall condition of rooms

Nice child friendly space, clean and appropriate, well-chosen equipment. Some are quite small which limits both number of children who can attend as well as the range of activities.

Accessibility:

Most not accessible from outside as there are often steep hospital steps and a long distance from the

front gate, but once on floor level the surface is level. The implementing INGOs and health staff are aware of this issue, but as a first initiative only these spaces were available. Both the Operation Mercy country director and some hospital doctors noted that in future they hope that a more accessible place will be found. Toilets are usually situated far away and not in good condition, though this is the case in most of the health facilities we visited.

Available Equipment:

As noted above, basic, appropriate and useful equipment was purchased by Operation Mercy e.g. (mat, therapy rolls, balls, table, chairs, toys, dolls etc.). Parents really liked the support room and appreciated the space and equipment. Staff at all levels were also very enthusiastic about the support rooms. It was a new concept for health centres/hospitals and the need for families to have such a facility was recognised. They would like more equipment and the suggestions ranged from basic drawing materials to computers and more sophisticated rehabilitation machines.

Operating hours, days and months, of the centres, etc.

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This varied according to where the support rooms had been set up and the type of staff involved e.g. in Guliston (Tues 8-5 & Sat 8-2), Sharinav (Weds 1-3 & Sat 11-1), Khuruzon (Tues 8-5), Rumi was only open Saturday mornings, as the support room had only just opened and people such as social workers, a nurse, two teachers and parents worked there on a voluntary basis. In both Khatlon locations visited, the doctors also said parents “can come any day of the week” but the VSO programme officer had noted during an interview in Dushanbe, that this had caused problems at the PMPCC when no designated day or a particular person were given.

Availability for a long term CBR structure:

All support room centre staff and hospital authorities had no hesitation in endorsing the continuation of the support rooms, so space should be available in the long term for CBR. However, the momentum needs to be kept up in order to demonstrate the usefulness of such a resource and the continuation of the service.

Staff usually covered the support room within their working week, and hospital managers and Ministry officials did not see this as an issue. However, these staff, particularly nurses have very low salaries and working at the support room may prevent them from earning money in other practice. The increased participation of parents who are present anyway as a support room resource could be explored and was already being used in Khatlon, Rumi.

Allocated staff and children action plan:

There was some variability in the staff allocated and how they worked. A common pattern (DRD) is a main doctor-trainer, a higher level paediatrician plus one or two nurses. In Khatlon, Khurozon support room, there was a doctor-trainer, one paediatrician and two nurses. When pressed to give an estimate of the time he spends there, the doctor thought approximately 17% for the CBR project, although he often saw children at other times. The nurses spend one whole day (Tuesday) of their three day working week for the support room.

The Rumi support room workers were; one nurse, three social workers, two teachers but as mentioned, they worked only Saturday morning on a voluntary basis. However, the doctor-trainer is very involved and active, also carrying out many home visits himself despite many other duties.

Those doctor-trainers and nurses not attached to a designated support room, e.g. Rudaki may face more difficulty monitoring or following up the children. On our visit, nurses were not present at midday and the locations of the polio affected children were not known. Later however we found the competent paediatrican who had originally completed the Polio Assessment forms, who knew the families and visited with us. It appears that regular home visits are not being carried out and the parents we visited were not aware of any educational materials and one of the children was in need of orthoses.

Child Action Plan: This was not generally well defined or the concept understood. The Polio Assessment forms were available but not always fully completed or accurate. There are sections with comment boxes which were sometimes used on the second page, but usually with only vague descriptions of ‘improved’, but without specific objectives or concrete

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measurements. Other doctors used an exercise book or child health records to write comments but they were not specific to rehabilitation treatment.

Number of children and parents they reach, the cost of setting up and maintaining each room, etc.

Commonly about five children with disabilities were seen weekly and on our visits in DRD there were around three children present. The majority have polio but there were also other children with neurological conditions such as cerebral palsy (CP). The number of children benefiting from this resource is low at present when the same children are seen on a one to one basis, especially on shorter days. There would be capacity for more children if staff learnt how to manage active group sessions, with the involvement of parents/carers too. Numbers are likely to increase when more parents become aware of the support room facility.

In Khurozon district the doctor stated that a total of 14 children with polio who were told to come on Tuesdays, plus others (CP, trauma, paralysis) who came, so in total approximately 25 children. However, the support room was quite small so it is unlikely that they are seen each week. In Khatlon many more families turned up but mainly because they were mustered for our visit – in Rumi it was first time for most families to come to the support room.

A large number of families came during our visit to Rumi support room.

In terms of home visits, sometimes only doctors do home visiting, other times nurses. However, some of the parents we talked to during focus group discussions or at home, said they had not received home visits. Those that had, appreciated being shown how to do the exercises and the support shown to them.On questioning it was hard to determine exactly how frequently community visits are carried out and there is high variability.

Cost & maintenance: Mostly absorbed by hospital or social welfare departments as space and staff allocated from existing resources.

Colourful equipment provided by UNICEF at the PMPCC in Khatlon, Kurghonteppa. The Centre staff were trained by the VSO volunteer (funded by UNICEF) working there. Support Groups:

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Around 20 support groups have been formed, with another to come in the DRD. A support group meeting was not included in the DRD field site itinerary but during the Khatlon field visit, two meetings with support group members were held. Two day training workshops have been held for the Khatlon support groups with more in-depth and holistic training for rehabilitation and child development topics.

There were three social workers, one nurse and 1 teacher present at the Rumi focus group discussion and they were also the people carrying out the support room activities on Saturdays. They felt the CBR project had helped with re-integration, play with others and prevented children being sent to institutions.

At present they were only able to see children with polio at the centre as there was no time or transport funds to enable them to do home visits. They stated there were many other children with disabilities out in the community but they covered a population of 180,000 in Rumi district and many more staff were needed. Ideally they felt that satellite services should be more available at village level as parents were too poor to pay the transport to town. They tried to help families with registration for disability cards as many faced bureaucratic obstacles and charges to obtain one.

Poverty is the overriding problem for the majority of families and the original plan in Khatlon was to form a large number of support groups following the district CBR training sessions who would compile Social Support Pans. Definitive data on the number of support groups formed was not available but it was reported that 63 were listed at the end of the training. However, one to two day training sessions was a short amount of time to consolidate knowledge on such a wide topic as CBR, so most did not continue to function as a group. However, individuals such as a medical point doctor we met in a village near Rumi had continued to disseminate information about polio and inclusion messages for children to attend school, within his daily work.

A report from the Handicap International Monitoring & Mentoring of March/April 2011 documents the problems in this extract below:

Only 14 village Support group from the 63 (support group formed in villages during the Polio seminars) send their Social Plan to District Trainers. Besides, even though nurses, teachers claim that they disseminate information on Polio and social support, the quality of it is not reflected on the data (getting Disability card and orthotics). Social group are not working as a group but rather individually, without coordination.

Capacity of rehabilitation and mid-level CBR project workers

It was reported during an INGO group discussion that the ability and motivation of support room staff did vary across the districts. During the field site visits, the doctor-trainers expressed a keen interest and willingness towards the CBR work. All staff noted how they did not have such a support space for families before and it was something new they liked.

A positive aspect noted by the OpM country director during our visits to the support rooms, was the number of children without polio who had previously not had disability registration but had now started the process or received the disability card. This was a useful side effect anticipated in the project proposal, that the CBR programme had helped to identify children

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with disabilities that are currently not in the government system and statistics. The example case study 1 below illustrates such a family.

Case study 1 – Abdullah 5 years with cerebral palsy

This young boy is being cared for by his grandmother and aunt, who have brought him to the Sharinav support room every week for three months, despite having to carry him for one hour. Although he tires easily they feel the exercises are helpful as he has progressed slowly and can stand with support.

He attends the NOC workshop for special shoes every two months and has had very positive experiences there, receiving the shoes free of charge, since they have been registered for the disability card.-

__________________________________________________________________________________

However, many of the support room staff do not have enough training and skills to fully function in the role of rehabilitation and orthotic prescription. Children with polio are relatively straight forward to rehabilitate, but the clinical reasoning required to plan effective, function rehabilitation plans and assess children for orthotics and mobility aids, would need trained rehabilitation personnel, at least to supervise and monitor outcomes for the children.

The short case study below illustrates some of the problems encountered.________________________________________________________________________

Case study 2 – Support Room Guliston

Firoza comes weekly to the Guliston support room for exercises with the health centre staff (Dr, nurse + paediatrician).

Dr has referred her for both disability card and orthoses but the parents have not wanted to take up these options. Mother says “We usually don’t go out of the house”, despite orthopaedic workshop being only 10 minutes away. A ‘medical’ neighbour offered to take measurements to the orthopaedic workshop but charged approx. $100 and never came back.

Both legs of Furoza are affected and now both TAs (Achilles tendons) are contracted – she did not receive any night splints or brochure showing passive stretchings. Now serial plasters or ETAs (mild surgery) to both ankles are

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Firoza, 4 yrs old girl with polio from Uzbek family attending support room since Aug 2011

required before she can stand with flat feet for walking. As her hips are also affected, she is likely to need a HKAFO (hip, knee, ankle orthoses).

The initial assessment chart was only partially and not correctly completed by the paediatrician, who did not tick the orthotic referral box when mother said they didn’t need any. Has apparently been prescribed a wheelchair but if this is given before proper orthotic rehabilitation, there is a chance Firoza will never learn to walk when it should definitely be a possibility._________________________________________________________________

Lessons learnt from this site visit:

There are gaps both in the communication and system procedures for provision of orthotics and mobility aids.

Monitoring system from support rooms is not adequate for the community visits, referrals or documentation

The CBR workers do not yet have adequate training or rehabilitation skills to deliver a comprehensive rehabilitation service.

Ideally, trained paediatric therapists are needed to provide the appropriate supervision and capacity building needed to improve the staff skills and service delivery, particularly when working with more complex neurological conditions such as cerebral palsy.

Lack of coordination between MoH, CBR project staff at Support Room, MLSP and the orthopaedic workshop

Families may need accompaniment to reach clinics, even when close by.

Record keeping is not adequate enough to make informed decisions on treatment.

In some places home visits are either not happening or not effective to meet rehabilitation needs.

Guidelines, using simple flow charts at every clinic on procedures and documentation are required, it would be helpful for staff and parents.

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Result 5: Affected children and adults are fitted with the relevant orthotic and mobility devices

Most of those listed with polio and requiring orthoses were fitted (approx. 250).However, there were definitely children missed off that list, as noted in both the MoH Monitoring report of August 2011, and during our first field visit where there were three children who lacked an orthosis or crutches. Sometimes parents had refused the orthotic, still hoping their child was going to fully recover, whilst others did not have the personal ability or funds to travel to Dushanbe for the orthopaedic workshop fitting. It is apparent that some families need psychosocial support to cope with their child’s disability. This has been recognised during the

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project implementation and the revised MoH monitoring form now has sections to pick up on psychosocial issues (see the example below taken from the relevant section of the new form).

If family is under stress due to disability and needs family psychosocial support ( ) Yes ( ) NoIf YES: What kind of psychosocial support would they would they like:

a. ( ) parents groupb. ( ) meet with psychologistc. ( ) meet with social worker

A positive case study example of rehabilitation with orthotic and mobility provision in Sharinav district is illustrated below:

Case Study 3 – Gulinara 8 years with polio

This young girl has polio that affected her right side arm and leg, also causing some curvature of her spine. Her mother had been taught exercises to help her recover and she attended both the Macheton government rehabilitation centre as well as the CBR support room.

We were able to examine her completed polio assessment chart, where she was referred to the NOC workshop and followed up. She was measured and fitted with a long leg hip orthosis there, which does have a knee joint. Despite her reluctance to wear an orthosis, Gulinara admitted that it was to easier to walk with it. Gulinara has successfully re-integrated back at her old school, she says without problems and her favourite lesson is drawing – see below

Gulinara with therapy ball at the Sahrinav support room and one of her drawings

Provision of assistive devices was variable though, whether in the acute phase night braces or permanent orthotics. There are clearly gaps across the referral, measurement, fitting and replacement systems, which is compounded by the involvement of two different and separate line ministries (MoH and MLSP). Most children have been seen only once, so since that time children have grown and some orthoses are already too small or were not functional in the home/community setting. There was also a lack of suitable crutches – axillary crutches are ordered from Iran and not always in stock, while elbow crutches are only available in two sizes and not appropriate for small children. Some children will be equipped with walkers but this material is currently not provided by the MLSP or pharmacists. It could be made locally out of wood for a modest price and the HI orthotist trainer noted that this has been suggested.

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Correct prescription, measurement & fitting of orthoses and mobility aids is an issue

Provision of Wheelchairs: This has been very problematic for the project teams as the current system whereby the MLSP buy a quota of 700 general wheelchairs annually, is not meeting the needs of younger children. Again the shortfall is further complicated by different Government authorities having responsibility for children at different ages, also depending on whether they have disabilities or grew up in a state institution such as a Baby Home.

On the field site visits we observed children who needed mobility aids such as crutches or walkers, having to walk behind an old discarded wheelchair or neighbour’s adult walker instead. These children have now been assessed for wheelchairs within the CBR project but two of them could be assessed for orthoses and crutches providing their arms were now strong enough. This would give them greater mobility in the Tajikistan context, which is not generally accessible for wheelchairs and make negotiating the school environment easier too.

The following extract form the Handicap International March/April 2011Monitoring-Mentoring report highlights some of the issues regarding orthotics :

The situation with orthotics did not change from previous visit. The number of children who have orthotics is low and the reasons remains still the same:

- Trainers, doctors and nurses and Support group members are not able to identify children who needed orthotics.

- Most of the parents, who were asked to go to Dushanbe to get orthotics, refused to go and explained that they need considerable sums to go.

- Most CWD leave in remote areas and are limited in receiving accurate information about orthotics and other mobile aids. Only 36% of Parents know what are they for and the majority do not realize the importance of having orthotics. This can be the main reason why parents do not go for orthotics.

Community awareness about importance of orthotics can change the situation. Trainers need to work more closely with districts health workers and support groups and ask them to held discussion on these topics among the community members.

The National Orthopaedic Workshop: One brief site visit was made with the Handicap International orthotic trainer, Mr Pritpal Singh, who has completed two separate, two month training visits this year. Unfortunately, the workshop Director and physiotherapist were not present at the time, but we were able to hold an informal group discussion with nine technicians and assistant technicians and the workshop coordinator.

The response from the technicians was that all the children with polio who were on the list given to them as needing orthoses, now have them. There had been some delay in this list reaching the orthopaedic workshop but in last 10 months figures were given of 253 orthoses made for 243 cases (some need > 1 orthosis). There were shortages of appropriate crutches and other materials which affected the quality of service delivery at times.

The training from the overseas visiting orthotists, Mr Singh was greatly appreciated as big improvements were seen in a short time frame. Now they are able to make jointed ankle foot

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orthoses (AFOs) and even more complex Hip, Knee, Ankle Foot orthoses (HKAFOs), whereas previously the focus was more limited to amputee prosthetics. A comprehensive manual had been given to the technicians but they still feel they need an expert to supervise for more complex cases. They also request training for orthopaedic shoes and cerebral palsy developmental aids, as well as further training & exchanges overseas.

Mobile Clinic: The Orthotic trainer and technicians say this works well, particularly for those outside Dushanbe affected by polio, covering nine districts. It is an appropriate, functional model which is much needed and appreciated by parents and project staff. Technicians feel it helps the families and spreads knowledge about orthoses too. However, limitations were experienced in that the team (1 technician,1 assistant, 1 physiotherapist and the coordinator) can only go out one day in two weeks. At present the trainer feels there is not the capacity to do more than 26 visits per year. Families still have to travel to Dushanbe for the fitting. It would be more efficient if the team could stay overnight in districts both to measure and fit previous batches, and save families the journey to Dushanbe, but at present there is no allocated budget for this.

In order to avoid the loss of this valuable service when the project ends in December, Operation Mercy have made provision for another year, negotiating an MoU with the Government workshop, so orthotic requisition can be completed and the service doesn’t suddenly collapse. Overall though, having just one fully functioning national orthopaedic workshop for the entire country is not sufficient. A recent UNICEF report3 noted that although there are four branches of the national orthopaedic workshop in the regional centres of Kurgan-Tyube, Kuliab, Khorog, and Khudjand, which can take measurements and fit orthotics, their capacity is very limited.Result 6: Affected children and people are able to participate in education and other normal, age-appropriate activities in their community with minimal stigma or discrimination

The message of the importance of participation and inclusion in school and community for children and others with disability had definitely been transmitted. The project workers we met from across health, education and social sectors, had been made aware of these fundamental CBR principles. Many children had returned to school but we still heard of a number that had not, sometimes through fear of either parents or child. They usually received a Home Tutor instead until they were able to return to school. 3 UNICEF Country Assessment of Essential Commodities in Tajikistan, Lilly Langbehn, July 2011

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HKAFO now produced at the National Orthopaedic workshop

The Orthotic trainer with technicians at the Orthopaedic workshop

However, we made a school and home visit to one bright 12 year old girl, Anisa from Sharinav, who did not even have a home school tutor – the head teacher stated that the household was too poor and unsuitable. The mother was having to cope on her own with an additive husband and very little money. She had been forced to rent a very poor dwelling with appalling accessibility issues and did not have suitable mobility aids to re-integrate back into school. She faced a multitude of social problems and was not able to cope with the barriers of registering for a

disability card and social assistance. Clearly, despite being known to the school and Support

Group, the intended Result 6 activities of family and community based solutions had not worked for this child.

Many other parents noted difficulties with obtaining a disability card, sometimes being asked for money or sent back without the right documentation. More families were helped with social assistance in the CBR project sites visited in Kahtlon region, where there was more involvement of social workers coming from Social Protection Units (SAHU) who were used to this type of work.

School Inclusion: One of the aspects to assess in the ToRs was whether schools have been adjusted to allow accessibility for children with disabilities. Here, there were mixed results with the seven entrance ramps completed in Khatlon but not yet finished in the DRD and now delayed due to bad weather. The original Result 6 Activities had also included adaptations for classrooms and toilets but there was insufficient funds budgeted to manage this in the end.

The CBR project school entrance ramp Vahksh

In all the schools we visited, toilets, other stairs, classrooms and playing fields all needed major attention. Within schools most corridors are wide and there is generally level space to move around but classes may often be on the second floor unless there was a change in curriculum. School head teachers did express a willingness to do this.

School Toilets: due to budgetary constraints none had been made accessible and they were in a very poor state, both at schools and within health facilities, often located far away. They can be more of a barrier to inclusion than stairs, where fellow pupils or teachers are often willing to assist. The ones we observed could not have been easily adapted and needed rather a complete new construction for the benefit of the whole school.

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Anisa at home carried by her brother

Most schools did try to welcome children with disabilities but resources for inclusion were not present i.e. no special teacher training, equipment or classroom materials/adaptations. The children attending school that we met at the support rooms or talked to in schools said they were managing well there and happy with friends, noting only slight difficulties with stairs, toilets, classrooms or playing fields (most did not engage in sports lessons). However, these children had only mild impairments, whilst the ones we met on home visits, with greater mobility challenges, requiring wheelchairs or walkers had not yet re-integrated.

One of the head teachers we met had followed up this issue after the TOT training by holding PTA (parent teacher association) meetings to talk about the issues raised. However, most teachers had not attended the CBR awareness training or any other special education courses for inclusion. Mr Amirov, the focal person at the Ministry of Education had noted that the CBR training on inclusion had been useful for increasing awareness amongst teachers and parents, but also acknowledged the huge task ahead of bringing inclusive education practices across schools in Tajikistan. Recently there has been a Government decree and a strategy on inclusive education was adopted, so this should provide a favourable climate for greater inclusion in the future.

Result 7: Evaluation and documentation for future direction: Tajikistan specific knowledge on community-based approaches, disability and Inclusive Education (IE) at government and district levels

To meet the objective of Result 7, the jointly developed terms of reference for the current consultancy were designed to make an assessment of the process of the work undertaken within the 15 month short duration of the CBR project. It was to review what has been achieved to date and the lessons learnt, and given that CBR is a relatively new concept in Tajikistan, it was to provide information to guide future interventions of UNICEF and its partners. Thus, the final section of the findings will look at the questions of effectiveness, efficiency and sustainability, followed by a conclusion with recommendations for taking the project forward in the future.

4) Effectiveness, Efficiency, Sustainability

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Vahksh school toilet - no water supply so previous UNICEF built ones unusable

Entrance and inside current toilet not accessible or user-friendly

The effectiveness of the project has been considered in terms of the extent to which the project achieved the expected results and all initially planned activities. These aspects have been discussed in detail under each of the Results 1-7 in the previous section. To give an overview, the information campaign was achieved to a large extent with all the brochures, posters and educational materials printed and well accepted. The awareness and TOT training sessions were successfully completed as planned. Even though there were some gaps in not being able to reach all the target group populations, this is understandable given the nature of an emergency response and short time frame. Due to administrative agreement delays, the TV/media campaign is yet to be completed but is expected to be broadcast in December before the end of the project.

The training and knowledge of rehabilitation and CBR principles targeted at mid-level, district and community health, education and social sector workers was carried out as planned with 100% of the trainings completed. The training tool kit (flip chart, posters, doll etc.) was produced and distributed, approved by the MoH and translated into Tajik. However, rehabilitation and CBR are vast subjects to learn and to gain a full understanding of them would normally take years. The INGOs themselves who delivered the training recognise that the training was not enough for project workers to be able to carry out their expected roles effectively to deliver a comprehensive quality service. There is a need both for increased coverage of target groups as well as more depth of practical knowledge concerning rehabilitation skills and good inclusive practices for schools.

Provision of assistive devices was specified under Result 5 and included acute phase braces, permanent orthoses and other mobility aids such as wheelchairs, crutches and walkers. These have been produced and distributed to the majority of polio children listed and wheelchairs are on order and expected to arrive by December. As discussed in the ‘Findings’ section previously, there were serious problems in the referral, prescription and fitting systems. The list of children needing orthoses was delayed in reaching the orthopaedic workshop, which meant that muscle contractures developed and children’s progress in regaining mobility was adversely affected, slowing their re-integration into society. A number of children have not gone back to school because they lack the wheelchairs, walkers, crutches and orthotic devices which would enable them to do so.

For certain there are children requiring orthoses who have been missed off as they fall between the system of CBR project workers who lack the requisite skills to know when or which type of orthosis is needed, the inadequate referral process with the NOC, which is compounded by the lack of coordination between different ministerial departments. Bringing in an expert orthotics trainer for a total of four months this year and establishing the mobile clinic were very important and effective steps towards improving the orthotics service and ones which should make a lasting impact.

Participation and education were the target areas of Result 6 and here there were mixed results in terms of project effectiveness. Many children had returned to school but these were largely the ones who had made a full recovery or who had only mild impairments, which meant they could function within the normal school environment. During the field site visits, the children we met with more challenging mobility or social issues had not successfully returned to school, nor were able to move around and participate so freely in the community.

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Apart from seven school entrance ramps in Khatlon oblast, little adaptation or increased accessibility could be observed at home or in the schools. It is helpful as a temporary measure that there is a system of ‘home tutoring’ for children, but this can also hinder their re-integration if it becomes a substitute for real inclusion along with their peers in school.

Constructing an entrance ramp at school can be just a symbol of accessibility if the rest of the school retains environmental barriers. On all our visits to school we noted that other barriers to accessibility remained; additional sets of steep stairs, unsuitable toilets, out of reach play areas, classrooms upstairs etc. It would be too ambitious to expect to overcome all accessibility barriers within the short time frame and available funds of this CBR project. At least now accessibility issues have been raised and the relevant staff and community members are more aware of the barriers than before, which is already an achievement in itself. It would be helpful if cross sector funding could be raised to initially create ‘model’ schools of accessibility, which would be of benefit to all. Then hopefully this example would influence future universal design of school and public building.

Other questions to consider for effectiveness concerns whether the methodology/tools were appropriate for the project objectives and whether they addressed the needs of all target groups. The methodological approach and tools (education materials, tool kits, mobile orthopaedic clinic, inter-sectorial approach, CBR principles etc.) can be said to have been appropriate and effective to meet project objectives. However, there is a need to build on the initial results achieved to reach more families at village level, with quality rehabilitation services.

Regarding efficiency is the question of whether the results achieved can be considered adequate for the budget spent, and whether the allocation of resources among different aspects of the project was appropriate or not. The funds were raised from a partnership between UNICEF, Operation Mercy and Handicap International and it can be judged that there was definitely value in the results achieved for monies spent. In addition, there was a substantial contribution made by the Government in term of the extensive allocation of staff made available to support the CBR project, as well as provision of space in buildings in which to hold the activities, particularly the designated support rooms.

Overall the different allocation of funds between; medical services, rehabilitation, equipment, training, CBR inclusion, awareness, accessibility in schools was appropriate and well used. However as has been noted, there were insufficient funds for all the necessary school adaptations. It had also been stated by orthopaedic technicians that there were insufficient funds for the mobile clinic to stay more than part of one day in each location. However, part of that issue is that current capacity at the NOC would not allow increased time away for the mobile clinic, without adversely affecting services at the main orthopaedic workshop.

Sustainability is a multi-faceted concept and was considered in this assessment from the following set of questions:

o Is the project methodology appropriate to local, cultural context?

o What is the level of sustainability in the results achieved to date? are they of long, medium or short term nature?

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o Can they continue to influence for lives of: a) children/families with disabilities, b) implementing partners c) other partners & stakeholders at district, provincial and national levels.

o Will the services, rehabilitation, CBR approaches, support groups etc. be maintained at the end of project support?

o What is the degree of longer term commitment and involvement of all parties, such as the three Government Ministries, implementing partners, community support groups and other stakeholders?

UNICEF and the project implementing partners have been working in Tajikistan for some time and already had good working relationships with the three key line ministries, as well as considerable experience of successful work on the ground. CBR is an appropriate methodology for resource poor settings, particularly where the majority of the population live in rural areas. However, it is a relatively new concept for Tajikistan and requires a shift from institution based services to the CBR concept of grass roots action and voluntary contribution, which were not necessarily part of the culture before.

People are used to a model of large, well-resourced rehabilitation institutes, with sophisticated therapy machines and where everything is provided for them, without requiring much active participation from their clients. Wherever we went on the field site visits, project workers and families all referred to the rehabilitation centres of Chorbogh, Macheton or the Republican Centres for child health. Most families had spent at least one stay there of up to four weeks and continued to return for treatment, even though acknowledging that their child with polio was no longer making progress since the initial recovery of muscle strength.

Most people still valued the more passive treatment modalities of electrotherapy, wax, massage etc. and expensive, sophisticated machines were highly praised and desired. Medical staff in general tended to favour that type of model for the CBR programme support rooms, rather than taking therapy to the villages with home visits, even whilst realising that most families were not able to travel often to such centres. The concept of tailoring interventions to the reality of home settings and functional daily life activities, and the mismatch of ‘high tech’ environments to everyday needs was not appreciated.

Thus for CBR to be sustainable requires far more assimilation of the principles and proof that low cost, rural alternative forms of rehabilitation and community mobilisation can be successful. It is early days yet, after just 15 months of implementation in what was an emergency response to a polio outbreak. Even so, for longer term sustainability of more active, family-centred rehabilitation, it would be beneficial to try and integrate these principles within Government rehabilitation structures, so that an appreciation of community outreach could become part of their work.The level of sustainability in the results achieved to date are likely to have a range of short, medium and longer term effects. In the short term, many families have been helped with rehabilitation and assistive devices and informed about their child’s disability, available services and social provision such as disability cards. In the medium term, a substantial number of health, education and social sector workers have been sensitised about CBR principles, not just of rehabilitation techniques but increased awareness of disability and the importance of participation and inclusion in society. Their capacity has been increased and

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their frequent requests for further training demonstrates an appreciation for what has been achieved.

A key factor for longer term sustainability for the CBR project was that it was embedded within Government structures and personnel, from ministerial to district levels. All three Government Ministries expressed strong approval of the project actions and for continuing to expand CBR across the country. The Head of Mother and Child services at the MoH declared during our interview that they intended to establish a joint cross sector National Rehabilitation Framework by the end of 2012, and that CBR should be used as a vehicle for delivering it. Two WHO visits from the VIP/DAR (Disability & Rehabilitation) unit during the polio outbreak had highlighted the need for a National Rehabilitation Plan and role of a national CBR network, which reinforces the position and approach of the CBR polio project work.

The question of whether services will continue after the project ends this December 2011 was asked during interviews with all three central Ministry representatives, as well as in the district offices and health facilities. Each time, officials were convinced that they would continue, even if the project support did stop. This was despite acknowledging that they needed the technical and ideally financial input from the UN and NGO sectors. Assessment and monitoring tools had been jointly developed and approved by the MoH, who stated that it would not be difficult for them to train their staff and analyse the data at the Ministry. One round of monitoring of this CBR project had already been done by a department official.

The fact that permanent space and staff were allocated to the Support Rooms and Support Groups demonstrated a strong commitment on the part of the Government. It will be important that these much appreciated child-centred spaces continue to thrive and be used by a growing number of children with other disabilities, now that the polio outbreak has abated.

The inter-sectorial approach adopted in the project has been another useful aspect which could have major long term implications. All three Ministries stated their conviction in cross ministry initiatives, despite the difficulties of doing so in the current longitudinal structure of separate administrations. The need for joint working was stressed by them, with the suggestion that UNICEF might take up the lead coordinating role for children’s services as they are positioned between Government, the UN and NGOs. Some Government cross ministry forums and round tables had been initiated already at high level. However, there is a the need for inter-sectorial, task force working groups to be established in order to ensure effective implementation. To this end, UNICEF is advocating and negotiating for a cross ministerial advisory group to be formed.

5) Conclusions

A considerable amount of work has been accomplished in the short 15 months duration of this project to achieve the expected results and activities to a large degree. The project was ambitious in scope and in the number of target groups it sought to reach, across different

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sectors. A number of significant achievements have been made in reaching the majority of affected children and young adults with polio needing rehabilitation and assistive devices, as well as other children with disabilities.

The intended number of trainings and educational material were completed and most of the Support Rooms established and equipped. A weaker aspect has been in the adaptation and inclusion work in schools. Entrance ramps were constructed just in Khatlon at the time of this assessment, whilst other environmental barriers remained throughout the target schools. There are mixed results in fitting the relevant orthotics and mobility aids. Although most of the children with polio listed did receive their orthosis eventually, the delay had caused contractures to develop or children had already grown out of them.

The system for referral and provision of other mobility aids such as wheelchairs, walkers and crutches did not always work effectively, and much work needs to be done together with Government departments to improve the referral process. There is a lack of mobility aids generally in the country and interventions that would support local production could alleviate the situation.

Although a large number of mid-level Government health, education and social workers attended up to three training workshops, their level of skills is not sufficient at this stage to deliver quality rehabilitation services. They lack training, skilled supervision and coverage to reach families at village level. There was universal appreciation and enthusiasm from all sections of the Government, from ministerial to district levels about the work accomplished by the CBR project. It has raised awareness and encouraged inter-sectorial approaches, which is quite an achievement in such a short space of time.

The project activities had targeted three of the five main areas of CBR, namely; health, education and social sectors in response to an emergency polio outbreak. Areas of livelihoods and empowerment were beyond the scope of this project. The possibilities and potential of CBR has been demonstrated and a window has been opened. It is important now to build on this and not to lose the momentum that has been reached.

6) Recommendations

1. Capacity building of rehabilitation professionals:

a) More qualified professionals such as; physiotherapists, occupational therapists, orthotists, preferably with paediatric experience are needed to work alongside Government workers, until these professions are upgraded within Tajikistan, to include community paediatric rehabilitation skills.

b) The type of training required varies from degree level therapists, to a 6-12 month model of child developmental therapist training,4 found in India (Mumbai, Delhi, Chennai, often at former Spastic Societies of India institutes). There are also 3 month CBR worker training models for example at CDD in Bangladesh www.cdd.org.bd/

4 Child developmental therapy is a practical course, that entails aspects of occupational, physiotherapy, speech and language, early development and play therapy, designed in a number of places in India to bridge the paediatric skill gap, especially for working with chronic disabilities such as cerebral palsy children.

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c) Currently the OPM, workforce development initiative, funded by the EU is holding accredited associate degree level training in Tajikistan for occupational and physiotherapy, as well as mid-level courses for CBR. Some of the staff at Ishtiroc are enrolled on this course and others have done child development placements in Mumbai.

d) Exchanges within country to good models of child therapy practice would be very helpful e.g. to Ishtiroc child development Centre or the Operation Mercy ‘All About Children’ project in Khojand region.

e) Exchanges to other countries in the region from policy makers to CBR project workers can be very effective in bringing about change and was frequently suggested by government staff involved with the project. Again India and Nepal have a wide range of CBR organisations, with long experience of working at grass roots level.

2. Strengthening Rehabilitation systems:

a) Home visits are currently not sufficient to reach villages and the majority of parents do not manage to attend support rooms regularly. A more systematic, coordinated approach between the different sectors would help to cover the gaps more.

b) National Orthopaedic Workshop is a crucial resource for physical rehabilitation but needs strengthening at all levels, including management as well as technical skills. An overseas orthotic expert will continue to be needed periodically.

c) A system for referral, fitting, distribution and review should be drawn up by all parties involved in these processes, so that there is joint ownership and agreement. Guidelines and flow charts of the systems and documentation required can then be disseminated

d) Ideally the four regional orthopaedic workshops could be strengthened to become more autonomous and better serve the population in the districts. In the meantime, the mobile clinic should have increased capacity to cover more districts and where necessary stay longer to complete fitting as well as measurements, to save families the cost and effort of travelling to Dushanbe – many families don’t make it and children suffer.

e) Wheel chair supply is inadequate and does not meet the needs of younger children. The issues have been discussed and are well known by the implementing partners. Operation Mercy now has plans to adopt an ‘assembly model’ based on the operations of a UK based INGO called Motivation , which has extensive experience of providing wheelchairs in low income settings. www. motivation .org. uk

3. Community Outreach

a) Support room staff need further paediatric training so the rooms could start to function more on a child development model, with group activities where parents have greater involvement in their child’s rehabilitation with active therapy groups, developmental activities for learning and daily living task training. Parents could have greater involvement in their child’s rehabilitation by helping their child in groups or assisting staff in running other learning or fun activities.

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b) More children with other types of disability should be identified and encouraged to attend. The majority of these conditions are likely to be cerebral palsy and intellectual delay, with long term chronic and complex needs. Staff need specific training on how to work with this type of child and additional, low cost ‘Conductive Education’ type furniture would be invaluable, such as, stools of varying height and ladder back chairs so children can learn to grip, balance and pull themselves to stand for functional tasks such as dressing and toileting.

c) Conductive education is a system of rehabilitation developed in Hungary at the Peto Institute and is now widely acclaimed across the world. It was designed as a practical method to achieve ‘orthofunction’ whereby children learnt to walk or at least move themselves independently so they could attend school. It is particularly suitable for large institutions where there are sufficient numbers of children to form groups of similar ability. It would be an appropriate model to encourage for the Tajikistan rehabilitation Centres as it promotes a more functional and active approach to achieve greater independence. http://www.youtube.com/watch?v=iaSoM68r7Io&feature=related

d) Community support needs to be strengthened as most families are not receiving services at village level and cannot afford to travel to the district Support Rooms. Many parents need accompaniment to attend more distant centres like the orthopaedic workshop in Dushanbe or help to overcome the obstacles of obtaining social assistance and disability cards. In the short term, this could be provided by the support groups but a longer term project would be to develop parents self-help groups

4. Inclusion and Schools

a) School adaptation – more than a ramp. In future, sufficient funding should be available to make at least target schools properly accessible and adapt not just the front entrance ramp but other areas in schools like classrooms, doorways and toilets etc. Universal design benefits everybody and there are low cost options – Handicap International noted at the assessment feedback session, that they hold a blueprint design for a six toilet block for schools which has one with access for wheelchairs whilst the rest are normal size for pupils.

b) The sanitation in both the schools and health centres we visited in the project sites was very poor for all. WASH projects are desperately needed across the project areas and probably the whole country. There are resources freely available on the internet which describe how to mainstream water and sanitation areas at relatively low cost. See Water Aid www. wateraid . org and the internet resource book entitled ‘Water and Sanitation for Disabled People and other vulnerable groups by Hazel Jones of Loughborough University http://www.wedc-knowledge.org/wedcopac/opacreq.dll/fullnf?Search_link=AAAA:M:553655366978

See also UNESCO - New toolkit on hygiene, sanitation and water in schools. UNICEF has a WASH program which could target the schools in the areas where the CBR project is implemented.

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d) Inclusive Education resources are freely available for the internet and these could be downloaded and distributed to bridge the gap until more training is available to teachers. As most are in English, they would need translating and some adaptation first. See UNESCO ‘Education for All’ tool kit, http://www.ictinedtoolkit.org, Embracing Diversity tool kit, http://icfe.teachereducation.net.pk, Save the Children ‘Making Schools Inclusive’ brochure www.savethechildren.org.uk

5. POVERTY was the most common problem cited for families of children with disability and it prevented some from attending the support groups or Orthopaedic workshop. The NGO monitoring reports show large numbers requiring social assistance, but they need greater support to access Social Protection benefits. The role of social workers should be recognised more in CBR programmes and the fact that some families need more support and accompaniment to access these resources.

6. Involvement of DPOs and parents of children associations in future initiatives is important to alleviate poverty in the long term, if they can be empowered to foster community development and include parents of children with disabilities. Ishtiroc have seen the results of empowering families through self-help approaches with parents groups. There are numerous examples of strong DPO development in Asia and the PSID approach of BPKS in Bangladesh has proved to be an appropriate and very successful model - http://www.bpksbd.org

7. A National Rehabilitation Plan and Joint Working Groups for rehabilitation across sectors are essential for future cohesive development, involving the three key Government sectors of health, education and social protection, as well as UN agencies and INGOS. It has been suggested by key stakeholders that UNICEF take the lead in facilitating the coordinated development of children’s services.

8. CBR Network5 to be strengthened nationally so that the various CBR actors (Operation Mercy, Handicap International, Caritas, OPM/EU) in Tajikistan coordinate their efforts and share expertise more. In the longer term, this CBR network could expand to include national stakeholders such as local NGOS, DPOs, Associations of parents who have children with disabilities, as well as government agencies in order to promote wider community development.

5 These last more global initiatives of National Rehabilitation Plan and enhanced CBR network nationally are also listed as recommendations in the WHO visit made by Mr Chapal Khasnabis recently this November 2011.

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Annex 1: List of key persons interviewedUNICEF Laylee Moshiri

Siyma Barkin KuzminSalohiddin Shamsiddinov

Rumi district Doctor-trainer & manager of Polyclinic -Dr Saidov Khurram

Operation Mercy Andrea VogtSobirjon SafarovDilorom Nazimova

Rumi Support Room

FGD: 16 children with families.

Handicap International Cecile RollandHilma RazkaoulRyan CalaourZafar DorgabekovPritpal Singh Sidhu

Rumi Support Group

FGD: 3 x SWs + 1 nurse + 1 teacher

MoH Mr RahmatulloevMs Aziza Khojaeva

Village in Rumi committee member

Doctor at village medical point

MoE Mr Amirov Home visit Sabrina & familyMoSLP Ms Soima Muhabbatova Kishti Centre

& HealthPromRachel Tainsh & staff

National Orthopaedic Jumilla Yusufi (coordinator) + 9 technicians & assistants

Macheton Rehabilitation Centre

Dr Shorev Director,Head nurse and 2 children with polio

Ishtiroc DPO meeting with Saida of the Disabled Women’s League, Ishtiroc at Kishti Centre

WHO Dr Stephen ChackoGulistan Support Room Doctor-trainer +

paediatrican + 2 nursesOPM/ EUCBR Vlodymyr Kuzminsky &

Erik Van DisselGuliston School Mr Omirov + pupil CWDRudaki health centre & 2 x home visits

Doctor trainerMahmud & Josebar CWD

Sharinav site visitSupport Room

Doctor-trainers x 2 (also Turzonsoda) + paediatrician + nursesFamilies with CWDs

Home visit Gulinara & Sharaf CWDsSchool & home visits Head teacher & home

visit Anisa’s homeKhatlonSupport Room

Polyclinic managerDr Mashraf + Padiatrician + nursesFGD: parents & children

Home visit Khorasson Parents & Farhod 12 years CP

Support Group FGD:3 x social workers +1 teacher + 1 nurse

PMPCC Dr Davlatova Manzura + nurses

KhurganteppaMLSP

Mr Nazarov Izatullo-Deputy Minister

Vahksh School 56 Head teacherKhurganteppaMoH

Deputy regional Director Mr Shonazarovah

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Annex 2: List of documents reviewed:

9. ToR polio evaluation October UNICEF

10. PCA format proposal for CBR Operation Mercy for assessment

11. CBR Results & Activities log frame

12. Operation Mercy Tajikistan 2010 Annual Report

13. Operation Mercy Report on Monitoring-Mentoring April-June 2011

14. Operation Mercy Semi-Annual Project Updates x 2 (July & November 2011)

15. Handicap International Monitoring -Mentoring Report March-April 2011

16. Handicap International Project Manager Khatlon documents on:

- Support Group Structure- Course Curriculum for Support Groups in Khatlon- End of Training reports- Level of Functional Mobility of PWPs in Khatlon- Client database for 2nd Quarter- Second & third quarterly reports- Assistive devices Excel databases

Orthopaedic workshop Expert Trainer’s reports: - First final report on P&O training in Tajikistan Feb-April 2011- Curriculum for P&O training- Excel database of assistive devices

17. Monitoring report concerning organization of medical services to children with disabilities in Districts of Republican Subordination, August 2011.

18. MoH Revised Monitoring form 201l

19. VSO Volunteer Reports 1st June – 29th August 2011

20. Tajikistan Monthly Update on Polio August 2011

21. Low cost options to move pilot projects to a national system of child protection,

2009 David Tobias

22. Travel Report Summaries, Chapal Khasnabis , June 2010 & November 2011 VIP/DAR Unit, WHO, Geneva.

23. UNICEF Country assessment of essential commodities in Tajikistan, Lilly Langbehn, July 2011

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Annex 3: Final Itineraries: DRD & Khatlon

Dushanbe & DRD region Itinerary – Sue Mackey

Date Time Activity CommentsNovember 16, 2011 Wednesday

10:00 Arrival in Dushanbe Airport via Almaty UNICEF car

12:00 -13:30 Lunch and orientation with UNICEF team Finalization of the schedule & site visits. Further documentation/ records reviewMeeting with CP team for detailed planning

UNICEF Office

14:30- 15:30 Security briefing, UNDSS UNDSS16:00- 17:00 Briefing with UNICEF Representative UNICEF

November 17, 2011 09:00- 12:00 Meeting with Operation Mercy and Handicap International followed by lunch including orthotic trainer from HI

In Operation Mercy Office

13:30 -14:30 Visit the orthopedic workshop OPM/ MLSP, Operation Mercy

14:30- 17:00 Visiting Macheton Centre in Vahdat DistrictPossible first visit to Guliston Jamoat CBR Room, discussion with the local support room staff

Operation Mercy

November 18, 2011 08:40- 09:50 Meeting with MOH, Mr Rahmatulloev, Head of MCH of the MOH, 221 77 69

10:00- 11:20 Meeting with the MOE, Mr. Amirov, Head of BS and AE Centres, 227 84 82

In MOE

14:00- 15:00 Meeting with the MLSP- Ms. Muhabbatova Soima, Head of Rendering Social services for children and families, 236 68 88

MLSP

16:30- 17:30 Meeting with Stephen Chacko, Dr Stephen Chacko, Consultant, WHO, Tajikistan, 907 78 01 43

WHO

November 19, 2011 08:00- 17:00 Travel to DRD to Gulistan, Rudaki with Operation Mercy – meet local project Support Room staff, school visit. Conduct interviews with key local authorities/ beneficiaries/ implementers.

Operation Mercy

November 20, 2011 08:00- 17:00 Review documentation & finalize the methodology and sampling, finalize arrangements for interviews/focus groups logistics, etc.

November 21, 2011 08:00- 12:00 Travel to DRD to Shahrinav district with Operation Mercy – meet local project Support Room staff, conduct interviews with key local authorities/ beneficiaries/ implementersVisit the school access for CWD

Operation Mercy

13:00- 17:00 Meet project trainer-doctor from Turzonsoda district . Home & school visits , conduct interviews with key local authorities/

Operation Mercy

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beneficiaries/implementersNovember 22, 2011 08:00 17:00 Travel to Khatlon oblast with Handicap

International , visit the project sites in Khorassan District, conduct interviews with key local authorities/ beneficiaries/ implementers. Travel to KurghonteppaVisit to PMPC KT +other sites (accompanied by VSO)Stay overnight in Kurghonteppa

Handicap International

November 23, 2011 08:00 17:00 Visit the project site in Jaloliddin Rumi District of Khatlon oblast with Handicap International , visit the project site in district, conduct interviews with key local authorities/ beneficiaries/ implementersVisit the school with access for CWDReturn Dushanbe

Handicap International

November 24, 2011 09:00 – 10:30 UNICEF office – progress update Operation Mercy11:00- 12:30 Meeting Rachel Tanish of HealthProm at

Kishti CentreOPM/ MLSP

13:30- 14:30 Meeting with VSO Tajikistan – Mr Khuvaydo, Programme Manager

In UNICEF

November Fri 25, 2011

10:00-11.00

11.30-12.30

Meeting with OPM/ EUCBR team leaders Vlodymyr Kuzminsky & Erik Van Dissel

DPO meeting with Saida of the Disabled Women’s League, Ishtiroc at Kishti Centre

13.30 - 1600

16:00 -19:00

Analysis & preparation for feedback session

De- briefing with UNICEF and implementing partners regarding the main findings, recommendations etc.

UNICEF

November 26-27th 08:00 17:00 Drafting of the report

November 28, 2011 05:10 am Departure from Dushanbe to Istanbul

Itinerary for Sue Mackey- Khatlon Oblast - November 22 and 23, 2011

Day 1 - November 22, Khurozon District

8:15 to 8:30 – Arrival and courtesy call with manager of Polyclinic8:31 to 9:00 – One-on-one with doctor-trainer (Dr Abdulloev Mashraf); brief look at support group room9:00 to 9:15 – Travel to home of child with disability 19:15 to 9:45 – Interview with child with disability 1 and parents9:46 to 10:00 – Travel back to Polyclinic10-01 to 10:45 – Discussion with parents of CWDs10:46 to 11:15 – Discussion with children with disability11:16 to 12:00 – Discussion with support group

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12:01 to 12:45 – Lunch with doctor trainer12:46 to 1:30 – Travel to KT1:31 to 2:15 – Visit at PMPC (Manager – Davlatova)2:16 to 2:30 – Travel to MLSP2:30 to 3:00 – Visit at MLSP (Mr Nazarov Izatullo-Deputy Minister)3:01 to 3:30 – Travel to Vahksh3:31 to 4:00 – Visit at School No. 564:01 to 4:30 – Travel back to KT4:31 to 5:00 – Meeting with Ryan at the Ramz

Day 2 - November 23, Rumi District

8:30 to 9:15 – Visit at MoH (Deputy regional Director - Shonazarovah)9:16 to 9:50 – Travel to Rumi9:51 to 10:00 – Arrival and courtesy call with manager of Polyclinic (Dr Saidov Khurram)10:01 – 10:30 – One-on-one with doctor-trainer 10:31 to 11:15 – Meeting with parents and children with disability11:16 to 12:00 – Meeting with support group 12:01 to 12:45 – Lunch12:46 to 1:00 – Travel to village1:01 to 1:45 – Interview with village health workers / community members1:46 to 2:15 – Travel to home of child with disability 2:16 to 2:45 – Interview with child with disability and parents2:46 to 3:15 – Travel to KT3:16 to 3:30 – Wrapping up with Ryan3:45 to 5:30 – Travel back to Dushanbe

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Annex 4: Topic guides used for data collection

Topic Guide 1: NGOs (OPM/ HI/ VSO)

1) Their understanding and views on how project is working to date2) Inter-sectorial approach – experience of:

o Advantageso Disadvantages

3) What kind of CBR approach they envision?- medical/ rehabilitation- social/ comprehensive model- DPO/ SHGs- participation extent

4) What works well? - specific examples of5) Challenges / constraints?6) Which aspects do they feel need changing?7) Future directions / scaling up / costings?

Topic Guide 2 – Project workers

1) What kind of work are you doing with the children targeted in the project?- Rehabilitation- School inclusion

2) How is the situation for the family ?- what kind of difficulties are the children facing?- what do you think are their greatest needs?

3) What helps the families most?- Could you give any examples ?- Any changes you noticed in the children

4) How was experience of working with the CBR polio project?- Training workshops & support afterwards- Number of children seen- Assistive devices

5) What things did not work so well?6) Which aspects should be included in any future programmes?

Topic Guide 3 – Families of children with disabilities

1) Opening questions on where they come from and how far travelled?2) What kind of difficulties do their children have?

- In the community- In school – teasing?- Moving around – any mobility aids

3) What kind of problems did / do you still face in caring for your child?

4) What kind of project activities happen at the centre or at home?- How many times seen the rehabilitation project workers?- Did you go to any other places for treatment?- In what way has it helped your child or not?

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- What doesn’t work so well?

5) What kind of activities would help you most in any future?6) Are you aware of any parent support group or disabled persons organisation?

Topic Guide 4 – Children with disabilities

1) Opening questions: do you live nearby? How did you get here?2) What kind of things do you like doing in general?- Play- Household chores- School – any problems there?

3) Do you have any difficulties doing those things? – what makes it difficult

4) How is it for those of you at school?- Moving around- Classmates welcoming or teasing- Teachers- Playground / toilets/ lessons- What about those of you old enough but not going to school?

5) What kind of exercises or other activities do you do at the centre or at home?- In what way has it helped you or not?

6) What things would you like to be able to do in the future?- What would help you most to do them

[*specific questions adapted according to which Ministry]

Topic Guide 5 : Ministries (MoH, MoE, MLSP)

1) Their understanding and views on how project is working to date- CBR focal point- Aspects needed for quality approach- Coordination

2) Inter-sectorial approach – experience of:o Advantageso Disadvantages

3) What kind of CBR approach they envision?- medical/ rehabilitation- social/ comprehensive model- National CBR framework

4) What works well? - specific examples of- Where Government capacity strengthened?5) Challenges / constraints?6) Which aspects do they feel need changing?- Which could be managed by themselves without UN/NGO support?- Monitoring & evaluation

7) Future directions / scaling up / costings?

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Annex 5: Consent Form

Logos UNICEF/Operation Mercy/ Handicap International

Consent Form: Families & Community members

Assessment of: ‘Setting up a community based rehabilitation model forchildren and adults affected by the polio outbreak and other children with

physical disabilities’ in the Republic of Tajikistan

Following the Polio Outbreak of 2010, UNICEF together with Operation Mercy andHandicap International have been running a Community Based Rehabilitation (CBR) project,since September last year in the 24 most afflicted districts, for those affected by polio as wellas other children with physical disabilities.

The aim of the project is to help these children receive physical rehabilitation services, inorder to decrease the disabling outcomes and help them to integrate back into mainstreamsociety.

This first 15 month phase is finishing in December and UNICEF and the partnerorganisations would like to make an assessment, in order to learn from you what thingsworked well, if there were any difficulties, and what you think is needed to improve thesituation for these children and families. We can then build on this learning to proposedevelopments for the project in the future.

Therefore we are requesting your permission to ask questions about your experiences, to talkalso with some of the children and to make a report of our findings. We will keep all theinformation confidential and not use any names. Your participation is completely voluntary,you can withdraw at any time and it will not affect you receiving medical services.

-------------------------------------------------------------------------------------------------------------

Participant Form

I have given this consent after being informed on the above mentioned issues. I am alsogiving permission for photographs taken to be used for the project purpose

Signature of the participant:

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Annex 6: CBR Project Log Frame

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Planned Results and Activities for Community Based Rehabilitation for Polio Affected Children June 2010 to December 2011

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Result Activities Implementing Partner Time line Status/Comments

1.The general population, and especially parents of children affected by polio or AFP, have access to correct information on the long-term effects of polio and the correct rehabilitation

Develop, print and start to distribute brochure (5000 copies), develop and print posters (50)

Operation Mercy, UNICEF, WHO June , July 2010 Brochures printed and distributed to xx places by Ops Mercy

Media / TV campaign Operation Mercy, UNICEF, broadcast 2011 To be implemented in 2011

2.Acute level health workers directly dealing with affected families have basic knowledge about CBR principles and range-of-movement exercises and can train others

One day or two half day trainings on cause, pathology and rehabilitation of acute post polio syndrome, practical lessons on range of movement and prevention of deformities, basic introduction to CBR (approx. 100 participants from Matcheton, Kurgan Teppa, Karaboli, and policlinic’s family doctors and nurses)

Operation Mercy , MOH June, July Completed activity by Operation Mercy xxx health workers received training in xx districts in months of xx

3.Mid-level, district and community health workers, district and community social workers, teachers and school directors, as well as Red Crescent volunteers gain good knowledge of CBR principles and rehabilitation techniques to use with people affected by polio

Tool kit developed and available in Tajik and approved by MOH

Operation Mercy in cooperation with other NGOs, MOH, MLSP, MOE

July, October In process to be completed by end of September

TOT seminar for partner organisation on usage of the tool kit

WHO, MOH

Operation Mercy and Handicapped International, UNICEF, MOH

September TOT for 10 participants already took place with expertise provided by Operation Mercy

Planned for 29th Sep – 1st of Oct.In addition doctors

45 two-day seminars for this target group in their locations (if possible) using the tool kit lessons, case studies form real life situations and practical mentoring of the participants

Operation Mercy Dushanbe City

Operation Mercy RRJ Soughd (if needed by Operation Mercy SogdBranch

VSO volunteer Khatlon, KT and and Vahsh valley –Handicapped International (depending on fund availability),

Supported by Tajik Red Crescent, and district offices of MoH, MLSP and MoE

Start October 2010 - ongoing

Monitoring and mentoring of district and community level trainees and implementation of learned lessons

See above After first trainings are completed

4.Creation of a structure of Mid level disability, health and education

Approx. 20 support groups location identified with in 30 min public transport travelling

See above As first rounds of training are

Approved: _____________________________________, Ministry of ________________________________________ Date: _____, July 2010

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