Dear HIFA colleagues,
Below is a message from our sister forum CHIFA (child health and rights), where we are having a fascinating discussion about Early child development in the run-up to the ISSOP Conference in Bonn (27-29 Sept, International Society for Social Paediatrics and Child Health). You can join CHIFA here: www.hifa.org/joinchifa
I am particularly struck by this sentence: "During my last evaluation in the Philippines highly motivated physiotherapists were telling me that they prefer to run away when a child with Cerebral Palsy is presented in their department because they feel incapable of offering useful interventions!"
I suspect that this may also be true of the health care of adults with disabilities? Skills to provide care for people with different types of disability (whether congnitive and/or physical) are perhaps especially lacking among healthcare professionals, as compared with skills to provide other aspects of health care to those without disability?
Fwd [chifa] Early child development (16)
Dear Dr. Sunanda K. Reddy and CHIFA members,
Thanks Dr Sunanda for raising your question about the purpose of the tools. To me, the most important one is Promoting Child Development. I have been doing quite some evaluations in low-resource settings (from the Philippines to Ethiopia) of so-called CBR programmes.
To me the most important evaluation question can usefully not be well answered: does your programme lead to a better quality of life and participation of children with neurodevelopmental (and intellectual) disability? While programmes may show some (even not many) successes of children with orthopedic conditions, the situation for the group of children with neurodevelopmental and intellectual disability is almost without exception very poor!
Why is that? To me there are a couple of reasons:
The lack of well-trained professionals in this field. During my last evaluation in the Philippines highly motivated physiotherapists were telling me that they prefer to run away when a child with Cerebral Palsy is presented in their department because they feel incapable of offering useful interventions!
The lack of well-trained fieldworkers who in fact play a vital role in working with parents and children and being able to coach parents, support them and help them to better help their child. Training of fieldworkers is usually too short, too superficial and too theoretical and doesn't help them to critically reflect and think laterally.
The lack of attention on programmes as well as the lack of development agencies to pay attention to this group of children. They may talk about disability inclusion; they may even do this in an almost religious way as they (rightfully) believe in it but they themselves - in spite of great policy papers on inclusion - are not prepared to invest in training of the much-needed staff.
Some even disregard the value of rehabilitation as at least in theiir mindset- rehabilitation is associated with the medical (read oppressive) model thinking. CBR is under threat and now moving into the realm of CBID (Community Based Inclusive Development).
As a philosophy it may sound great; as a way to play a meaningful role for the group of children I have been referring to is deadly dangerous!
It is urgent time that we start developing a serious interest in this group of children and not from a research perspective (only)!
The Liliane Foundation in the Netherlands is currently running a pilot called STEP (Support Tools Enabling Parents) which focuses on this group of children. The pilot involves an intensive training and coaching trajectory in 4 African countries. Besides, there are a couple of tools that should support the fieldworkers and professionals i.e. WhatsApp groups, a portal and the CP-App which has been developed by Enablement.
A research study in one of these countries (Uganda) should provide the evidence that this pilot will lead to changes in participation and better quality of life of both children and parents. (more information about this project can be obtained from me)
NB: this reaction is a personal reaction and not written as co-chair of the CBR/CBID Taskgroup of IDDC!
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CHIFA Profile: Huib Cornielje is Director of Enablement in the Netherlands. Professional interests: public health; PHC and community-based rehabilitation. h.cornielje AT enablement.nl
Best wishes, Neil
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HIFA profile: Neil Pakenham-Walsh is coordinator of the HIFA global health campaign (Healthcare Information For All - www.hifa.org ), a global community with more than 18,000 members in 177 countries, interacting on five global forums in three languages. He also currently chairs the Dgroups Foundation (www.dgroups.info), which supports 800 communities of practice on international development, health and social justice. Twitter: @hifa_org FB: facebook.com/HIFAdotORG email@example.com