Transcript What happens when I leave? - Speech Pathology Australia

Communication Therapy International
Projects in Communication Disability...
“What happens when I leave?”
A Workshop on Sustainability
STUDY DAY REPORT
November 2007
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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
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)?”
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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
More developed
regions
Less developed
regions
TOTAL
Total population
(millions)
1,207
4,086
5,293
Prevalence
mod/sev disability
7.73%
4,47%
5,21%
No of moderately/
severely disabled
people (millions)
93.3
182.2
276.1
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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
•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
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•
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>






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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.
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:
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Urban vs rural services
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Segregated vs inclusive education
•
Specialist professionals vs generic workers
•
Levels of training and qualification
•
Gender issues
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Poverty – as a big factor in disabled people’s lives
•
Conflict & disasters – emergency relief vs development
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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/2806581172608138489/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
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•
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:
1.
2.
Start thinking about your exit early (even before you start!)
Plan for carry over.
Personnel
a) Who will carry on the work?
b) Will it be an individual or a group?
c) How will they be selected
d) How will you assess the person’s motivation for leading the project?
e) How will they be supported when you leave?
f)
How will you make sure the person feels they are leading the project?
g) How will you ensure they have the recognition of others?
h) 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
a. When you are setting objectives include the time after you go, will they be the
same or different?
b. Negotiate the objectives with the “Powers that be”
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4. When you are actually leaving
a.
b.
c.
d.
e.
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 [email protected]
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Draft Questions – for further discussion
1.
2.
3.
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 !)
4. Has there been a needs analysis? Who was asked ?
5. What is the context of the provision you are being asked to provide?
6. 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
7. 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 ?
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