Communication Therapy International

1. Communication Therapy International Projects in Communication Disability... “What happens when I leave?” A Workshop on Sustainability STUDY DAY REPORT November 2007

2. COMMUNICATION THERAPY INTERNATIONAL STUDY DAY Projects in Communication Disability... “What happens when I leave?” November 10th 2007 PROGRAMME 10.00 Registration and Coffee 10.30 Sustainability – what’s that? An introduction to the main issues 12.00 Lunch 1.00 CTI AGM 1.30 Workshops on sustainability – what can we do? a) Short term visits b) Long term projects 2.30 Plenary summing up re sustainability 3.00 Group work on CTI advice sheets for people planning to work in projects in developing countries 4.00 Finish

3. Introduction Many CTI members consider going to work with disability projects in developing countries. This may be only for a relatively short term period, and then they plan to leave. What happens in the long term? Some CTI members based in developing countries are considering starting projects in communication disability and may not be sure how they will continue long term. Consideration was given to issues of sustainability in disability work in development settings. What affects sustainability? How can we best ensure that the work will continue in the long term? So we all need to consider sustainability The study day followed a workshop format with small group work throughout the day. This report endeavours to capture the flavour of the day as well as the information that was covered. The content reflects the experiences and opinions of the participants on the day who were from a variety of backgrounds and cultures. • Sustainability – An Introduction to the Main Issues • led by Mary Wickenden Mary began by outlining the programme for the day and then set the scene for the topic with some introductory background about Disability in Developing Countries. She introduced the following statistics: • 5-10 % of the world’s are disabled (WHO estimates) • That’s around 600 million people • 80% lack access to professional healthcare • 4% have access to rehabilitation The participants then worked in two groups to discuss the question – “Are there proportionately more disabled people in developed (minority world) or developing countries (majority world)?”

4. The following issues were covered: • It depends on the definition of disability and the effect of the disability on the person’s life • Health care facilities are better in the developed world so more children may survive • But poor health care in developing countries may mean more people have disabilities • More people live to old age in developed countries • It was also acknowledged that accurate figures are very hard to come by because some countries do not count how many disabled people they have, and definitions vary widely. • In fact there are relatively more disabled people in the ‘developed’ minority countries of the north. (See figure 1). However there are huge numbers of disabled people in the ‘south’ , because of the very large populations in many of these countries. The problem of providing rehabilitation and support for these people, especially in poor and rural places is huge. • Many countries are choosing to developing CBR – Community Based Rehabilitation as the most suitable type of service. This usually uses very broad, non-technical skill and ‘social model ‘ approaches to supporting disabled people in poor and remote communities. • The groups then discussed what proportion of all disabled people have communication disabilities. The groups acknowledged that as well as people with communication disabilities alone, many other people with other disabilities experience communication disabilities as part of their impairment. For example many of those people with a physical disability may have difficulty with communication too or be social isolated which leads to communication disability. Additionally most people with learning disabilities and some with mental illness have communication impairments which make them isolated. Research has shown that 49% of all disabled people have a communication disability ( Hartley 1998). This is an under-recognised fact, as often only deafness is recognised or categorised. Other types of communication impairment are often poorly understood and not counted. Global Estimates of prevalence of moderately and severely disabled people (based on UN 1990 pop predictions) (Helander 1986) • Figure 1

5. We then considered some common scenarios which might result in some new work with people with communication disabilities starting in developing countries. These are all real examples ! • A small locally run organisation invite ‘an expert’ to work with them for a fixed period ‘as a guest’. Often fairly short timescales (weeks or months), but without clear aims or long term planning. • Someone with expertise visits a country for other reasons (e.g. visiting, holiday), likes it and decides they would like to return to work there. They find a local contact and just start. • A local government respond to pressure to provide Communication Disability services by applying to an overseas volunteering programme (eg VSO, Peace Corps) for a foreign expert to work with them for 2 years • A large international disability NGO decides that they should add services for people with communication disabilities to their range of disability projects. They identify a limited budget to bring a foreign expert in to do some intensive training with local CBR workers for one month. A government decide that they will pay for one of their nationals to go abroad and train as an SLT , and that they can then return to set up services for the whole country • Two ‘experts’ meet at a conference about a specific area of CD and decide to set up a service to address this in a country that has no other services (eg cleft palate, deafness). • Not all of these seem an ideal way to start, and some seem quite likely to provide only very short term benefit • to local communities. • What would help to make these types of initiative • sustainable in the long term? • The groups then discussed positive and negative aspects that can affect sustainability and participants’ contributed their own experiences of this.The discussions were interesting and varied and the following is a summary of the main points: • Positive Aspects • Joining a project that is already set up and building on what has already been done can be very useful and productive. Adding in specific knowledge and skills that are not available locally • A short term visit of an “expert” can be a ‘way in’ or a ‘jump start’ for a local project. It can raise awareness and the status of the work and give credibility to what is being done. It is important to acknowledge that all projects have to start somewhere • The visitor can give support to the local practitioners and encourage their ideas

6. The most successful projects are ones that respond to need that has been identified by key people in the community (eg by disabled people or families, health workers or disability organisations). • Being realistic about what can be achieved, doing something well for a small number of people is still important. It may sow the seed for something bigger! • Follow up visits to the project can provide on-going support and further relevant training in the local situation. A productive long term partnership across countries or regions may develop • The visitor’s attitude is key, need to be ready to acknowledge all that you don’t know and adapt your ideas to the local context. • The experience can be of huge benefit to the visitor for their own professional and personal development as well as adding to the skills they can use later, perhaps with a similar community back home or in another place Negative aspects • The visiting “expert” may be interested in communication impairment or disability, but not in development of services in a resource poor setting. This person may be an expert in an aspect of communication but not an expert in the local culture, communication norms or the local situation, and may not know much about what is already happening for disabled people in the area. • The timescale is often restrictive as it is not decided according to what is needed but according to the budget, or someone’s personal timescale and commitment. Very short term visits of only a few weeks need very careful and targeting planning. • The visitor may undermine or undervalue the local “expert”. There may be trained or untrained people doing good work in the area that is unrecognised. • The status of the visitor affects how the work is viewed, for example if the visitor is a volunteer they may not be valued in the same way as a paid consultant • There may be opposition from local practitioners, who are using different approaches or who are worried about how the new work will affect them. • Difficulties in identifying who you are going to work with and also who is taking responsibility/control of the on-going work. How does it link with other projects? • Too many different “experts” without coordination can cause difficulties

7. Culture of dependency can be created by “bringing people in” from outside. • Planners often don’t understand how much setting up a service involves and that one person cannot do it alone, or that it takes a long time. • Sending someone to train in Speech and Language Therapy in a developed country does not equip them to set up a service. They will gain the clinical skills but not skills in planning and management and their skills will not be locally appropriate. There may be a lack of support when they return, and high expectations of what they can achieve on their own. • When training courses are imported the danger is that the majority of students won’t work locally but will leave their own country and work overseas.Contributing to Brain drain! The groups fed back their comments and then the main issues were summarized as follows: Sustainability is basically the long term viability of any programme i.e. Will it last ? How appropriate is the project idea for that place at that time? Some key questions to consider and explore> • existing skills and knowledge in health/education/disability • who is fulfilling the role at the moment • cultural issues (beliefs, attitudes, practices • politics (national and local) • Finances( who is funding , how much, for how long?) • locally identified needs and priorities • infrastructure/support/networks • local commitment ? (attitudes, concerns) It is essential to consider: • How this new development fits into existing practices and services • The implications of this work on other people’s work/status/role/knowledge • Will this new service reach the people you think would benefit / who can’t get it now? ( Often new initiatives only reach urban and richer people !) • Is it wanted and understood and supported by local people? Many of the issues that will affect sustainability will need to be considered right at the beginning when planning how to begin the project.

8. Need to consider: • Are you going to select a particular clinical area e.g. Deafness • How are you going to choose? • Need to know what the local people think they need • Not to be too influenced by your own training • Impairment, activity or participation – you may not feel that impairment is the most useful place to start but this may be what is expected • Top Down or Bottom Up Development – A government initiative or local community one? • Most of the evidence suggests that new initiatives work best when they are bottom up • (from the community themselves) • BUT • The money usually comes from the top ! • (from large organisations or governments – a delicate balance) • To import or not to import. Is it best to use models of practice from other places? It is important to avoid reinventing the wheel and to learn from others’ mistakes but also want to make use of existing expertise. Often things will need adapting. • Training or Service Development – is the emphasis going to be on teaching others or providing a service? Or a bit of both. If you don’t pass on skills, there will be nothing left when you leave. • How are you going to link with existing practitioners and services? • Different professionals may work in isolation, • may see you as a threat (status/money) • Practices might be ones that you don’t agree with • People may misunderstand/overestimate what you can do (range and timescale) • And finally we identified some further issues that might need to be considered: • Urban vs rural services • Segregated vs inclusive education • Specialist professionals vs generic workers • Levels of training and qualification • Gender issues • Poverty – as a big factor in disabled people’s lives • Conflict & disasters – emergency relief vs development

9. References – here are some key texts which might be useful. • Barron T & Amerena P (2007) Disability and Inclusive Development. Leonard Cheshire Int. • Coleridge P (1996) Disability, Liberation and Development.Oxfam:Oxford • DFID (2002) Disability, Poverty and Development. • Finkelflugel H (2004) Empowered to Differ. Stakeholders influences in CBR. • Elwan, A. (1999). Poverty and disability: A survey of the literature. World Development Report 2000/2001 Social Protection Discussion Paper 9932. World Bank Group. Retrieved August 25, 2007, http://siteresources.worldbank.org/DISABILITY/Resources/280658-1172608138489/PovertyDisabElwan.pdf • Hartley, S. (1998). Service development to meet the needs of “people with communication disabilities” in developing countries. Disability Rehabilitation 20, 277-284. • Helander E (1992) Prejudice and Dignity. UNDP • Practical Workshop – What can we do? • The groups were given scenarios to look at and discuss what they would do to ensure sustainability. • Scenario 1 • In a rural area of Sierra Leone a child of 8 with cerebral palsy has been provided with a special chair to help her to sit up unassisted. You are not sure of her level of learning ability but, at this point she is demonstrating some skills which are normal range for her age. You have set up a basic communication board using hand drawn pictures which she has started to use spontaneously to say what she wants and thinks. You’ll be returning to the UK in 5 weeks. How can you help to ensure that she continues to use this form of communication? • Points raised: • Need to raise awareness of the communication system with parents and siblings and the local community • Need to raise enthusiasm by showing what she can do with it and how it can improve her day to day life. • Need to provide training on the practical making of the board • Need to source locally available resources • Need to provide training on how to give opportunities for her to use it now • Important to discuss how she may develop her use of it as she gets older • Rely on family as the experts

10. Scenario 2 • You’ve been placed in a non-governmental deaf school in Calcutta. You’ve been asked to improve the children’s speech by the Headteacher. You decide that, in addition to providing some individual therapy for the children with moderate hearing impairment, you will introduce some basic signing to improve total communication for those with more severe hearing impairment. You set up a series of training sessions for the staff but out of 8, only 2 turn up on a regular basis. 6 months after you leave you hear that no signing is being used and that the 2 members of staff who attended the training regularly have left. Looking back, what might you have done to ensure that what you had contributed was more sustainable? • Points raised: • Get Headteacher involved to ensure he/she understands reasons and benefits of total communication • Provide training for staff including reasons, benefits, evidence etc to increase motivation • Involve the parents • Signing focus for all children not just a particular group. • Use different ways of introducing signing – songs, drama etc • Model signing at all opportunities • Look for ways to give ownership of total communication approach to the staff • Conclusion • The day concluded by trying to pull the ideas from the day together and develop some practical steps to take to ensure sustainability. • Firstly the group put together some exit strategies to consider: • Start thinking about your exit early (even before you start!) • Plan for carry over. • Personnel • Who will carry on the work? • Will it be an individual or a group? • How will they be selected • How will you assess the person’s motivation for leading the project? • How will they be supported when you leave? • How will you make sure the person feels they are leading the project? • How will you ensure they have the recognition of others? • How will you ensure they have adequate commitment of time? Resources – what do you need to leave behind? Where will people get new ideas and info in the future? • Funding – how will it be funded in the future? • 3.Objectives • When you are setting objectives include the time after you go, will they be the same or different? • Negotiate the objectives with the “Powers that be”

11. 4. When you are actually leaving • Complete the project while you are still in the country (don’t think you can finish off when you get back home) • Make sure the person you are handing over to feels ownership of the project • Try and think of a way of celebrating your leaving which will be positive for the project • Don’t make promises about the future unless you know you can fulfil them • Discuss problem-solving skills with the person you are handing over to • Secondly the group put together some questions to ask if you are asked to make a short • term visit to a country to develop some aspect of service for people with communication • disabilities. • These ideas will be developed in a subsequent workshop in 2008, into an advice pack for • members considering working for a project in communication disability in a developing • country. This will be available on the website in September 2008. Do let us know if you • would like to be involved in this or send us your contributions and ideas. nb . Photo from WHO website CTI welcomes anyone who has interest or experience in working with people with communication disabilities (PCDs) in developing countries. For more information please see our website on www.commtherapyint.com and for information on membership contact us on ctimembership@yahoo.co.uk

12. Draft Questions – for further discussion • Who has asked for this visit? Who are they connected to ? • Has there been any similar activity in the past? If yes, what were the outcomes? • What do people want exactly (e.g. training for trainers, training for practitioners,/parents/carers, specialist service provision, work in schools, awareness raising, government level planning or lobbying–people may not know what they want !) • Has there been a needs analysis? Who was asked ? • What is the context of the provision you are being asked to provide? • Where will your ‘provision‘ fit in e.g. if you train teachers to use a detailed assessment of language but those teachers have a class of 100 children, how can they use this training? Training PT assistants or nurses to do communication work, may conflict with their other roles • What are the level of skills and knowledge of anyone you’ll be working with? i.e. what is their starting point? Existing level of training. • 8. What are the possible career structure implications for any workers that you train. What will their status and pay be? How will they be supervised and supported? • 9. Do you share languages with the people you’ll be working with?- interpretation of the responses you might get.-0 • 10. What do the host country want out of the visit? • 11. Are there any conditions/ specified outcomes of the visit • 12.Sustainability - what will happen with what you are going to do after you leave? Has some follow up been planned. Has a key person been identified? • 13. Am I expected to bring things with me eg books, laptop etc • 14. What resources will the host country have before you arrive and after you leave eg books, toys, internet access, other expertise ? • 15. Who will you be working with/for? (Government, Non- government?) • 16. Are there any local statistics about numbers of disabled people or types of services ?