News from ICPS Members

INVITED EDITORIAL DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY
August 2016 | Volume 58 | Issue 8
‘Nothing about us without us’

Anushka is 14 years old. She and her parents live a 3-hour drive from Kathmandu, in a village where their livelihood is the potato crop. Today her Outreach Worker from the Self-Help Group for Cerebral Palsy Nepal (SGCP) is coming with visiting professionals. They have been invited by SGCP to contribute their up-to-date knowledge in the hope of improving the daily lives and function of children with cerebral palsy.

Anushka has no speech. She is unable to walk, and spends her day sitting outside, propped against the wall of the house, tormented by her younger brother, and surrounded by goats and chickens. She has never learned to sit unaided. The visitors ask Mother if she has a stool or box for Anushka to sit on. She produces an old wastepaper basket, which is turned upside down and Anushka is shown how to sit on it independently; her bare feet placed firmly on the ground increase her stability. Father arrives. Seeing Anushka seated upright, he says he will make a wooden box for her to sit on.

Curious neighbours join the discussion. ‘We all admire you’, says one man, ‘the way you look after Anushka.’ Another says, ‘Had she been my daughter, I would have left her out on the mountainside to die.’ ‘We do our best,’ says a third. ‘We call in to see if she is alright.’

The visitors notice that Anushka has ‘good hands’, and ask how she drinks. Mother tilts Anuska’s head back and pours a beaker of water from a great height. The visitors ask Anushka if she would like to drink by herself. She smiles. They have brought a two-handled mug, which Anushka is able to grasp with both hands. She lifts it to her lips and drinks.

Anushka does not attend school, because transporting her is a problem. The village streets consist of deep sand. The visitors suggest a portable chair with poles. Immediately, there are offers to make one, and Anushka gets very excited. Her parents continue talking with their neighbours. Their fears of being ostracized because of Anushka disappear. They wave the visitors goodbye, discussing future plans with enthusiasm.

This thumbnail sketch illustrates the importance of including parents and the person with special needs in all conversations about their welfare. The International Cerebral Palsy Society (ICPS), founded in 1969, helps others to help themselves. Parent organizations globally, individual professionals, and people with disabilities form its membership. The ICPS seeks to share new approaches and ideas, to reply to online enquires, and to respond appropriately to needs. It works at low cost with people with cerebral palsy, their families, and those who work with them.

The ICPS team that worked with Anushka and other children in Nepal is comprised of a physiotherapist and a special needs teacher. They do not work to a conventional model. Instead, they use their skills to complement each other and are able to look, listen, and learn from the family, taking into account environmental and economic factors, especially living conditions, and they are able to improvise accordingly. Problems may seem the same, but solutions can be very different.

For over 50 years, parents have asked me the same questions: ‘Will my child walk, will he get a job, and will he marry?’ Though the questions never change, the answers do, as our knowledge and understanding improve. Parents are the experts on their children. We need to listen to what they and their children tell us, respond in plain language, and thus ensure that we honour the Disability Rights groups’ slogan, ‘Nothing about us without us’.

ANITA LORING
Chairman
International Cerebral Palsy Society

doi:10.1111/dmcn13187
2016 Mac Keith Press


DAVID’S STORY ------ HELPING EARTHQUAKE VICTIMS IN NEPAL

For many years ICPS has had a member organisation in Nepal, the headquarters are based in Kathmandu. ICPS has worked closely with them taking a team to work with the children, the staff and parents.

Following the recent devastating earthquakes in Nepal, we made contact with our member, Self-Help Group for Cerebral Palsy SGCP, and Co Reijnders of the Stichting ‘Holland Building Nepal’ who raises funds for the SGCP, to see what the news was and if we could help.

Co replied that he had been in contact with Bimal Shrestha, the CEO of SGCP, who had written, ‘all the children and the staff are safe. We still miss one driver for the second time...But perhaps empty cell phone.

We are raising money for the program ’Help at the Doorstep.’ All the children from the valley and in the districts will be visited to see what they need. The visit is with around 50 people, all volunteers. If needed, the family will get a maximum of 5000 Nrp (50 euro) for a tent/shelter, rice, water also.’

But what about the CP children? Co asked.

‘Many of them could not move by themselves during and after the earthquakes. I remember one boy said; I wish I was dead, then I would not be so afraid.... Another one said: What are you doing God? We already tolerate two big earthquake and thousands of after shakes. You damaged our house, we migrate to tent because of quake. Nowadays very very big thunderstorms are coming and tent also damaged.

Yesterday we got a lot of messages; again a big quack felt....people are so afraid. I do believe these people need some help....I think Nepali people are afraid.’

Reading this first-hand account, the ICPS Executive Committee immediately decided that the annual subscription SGCP pays should be kept by them and put towards the ‘Help at the Doorstep’ programme.

Committee member John Couglan, resident in Luxembourg, wondered whether he too could help. He knew that his son David who has CP but is doing very well in mainstream education at the European School Luxembourg 1, and the other children were organising a fundraising day to help victims of the earthquakes in Nepal, so he and David put in an application to the Fundraising Committee asking that some of the money raised should be given to the ‘Help at the Doorstep’ project.

The fundraising event raised €14,000 and the Committee decided to spit it between 7 NGO's and SGCP received €2,000!

This is the most wonderful effort and we send our thanks to David and his friends for all their hard work and enthusiasm.

If you too would like to help the victims of the earthquakes in Nepal, please contact Co Reijnders at c.reijnders@hetnet.nl

There are also two relevant websites, the first www.shbn.nl is mainly in Dutch, but not all, and www.cpnepal.org is the website of SGCP

BENGT HAGBERG, MD, PHD (1923 - 2015)

It is with great sadness that we report the death on April 12, 2015 of Bengt Hagberg, MD, PhD. Bengt and his late wife Gudrun were Honorary Life Members of ICPS and Bengt was instrumental in organising some memorable meetings with ICPS in Sweden.

His contribution to our knowledge and understanding of the causes of cerebral palsy and the epidemiology work he and Gudrun carried out laid the foundations for our better understanding of the aetiology of CP worldwide.

For further information please see
http://www.childneurologysociety.org/resources/resources-detail-view/bengt-hagberg-md-phd-(1923---2015)

From our member in Zambia Esther Mundia of MYCEPA

I have just attended the 9th International Congress on Cerebral Palsy held in Bled Slovenia. I am grateful for the invitation, the chance to attend and participate.

It is good to hear from so many professionals and parents as well, to know so much research work is being made, striving to find answers to improve the quality of life for our children. With these developments, I look forward to a bright future for them, hoping every affected child could be reached, no matter who they are or from which part of the world they come from.

Among other things, I have brought home pleasant and useful memories of time spent with new found friends and hope the linkages will continue to grow.

Kind regards
Esther

Find out more about Esther's organisation MYCEPA by going to: mycepazambia.com

DR JEAN CALDER

Image The University of Queensland Australia recently awarded an Honorary Degree to ICPS member Dr Jean Calder in recognition of her work for people with disabilities, particularly in Palestine.

This is the address she gave upon receipt of her Honour







La Fondation Motrice France

 We know some of you speak French, and thought you could be interested in reading their Xmas letter, just fresh from the printing works, about sports and 2 research projects, one in central France and one in Scotland.

Click here to read in english
http://www.lafondationmotrice.org/












[NEPAL] CALL[S] FOR NATIONAL CEREBRAL PALSY POLICY

100% of Nepali children with Neurological Disorders successfully learn to read and write in mainstream schools following specialist care provided by Nepal’s only dedicated institution.
Dhapakhel, Lalitpur, 05 March 2012 - National and international health and education experts united this week in a call for both government and educational institutions to recognise and support an estimated 70,000 suffers of Cerebral Palsy in Nepal. The drive came to a head as specialists gathered in the Hotel Himalaya, Lalitpur (Kathmandu), to agree the key steps urgently needed for action.
The seminar, ‘Moving Ahead for Designing the Future: Schooling of Nepali Children with Neurological Disorders’ unveiled the results of a study which confirms the desperate need of Cerebral Palsy sufferers in Nepal, and their potential to achieve, given the right support. The study was carried out with the objective of exploring the educational status of all those children with Neurological Disorder who were enrolled in mainstream education following the initiation of The Self-Help Group for Cerebral Palsy (SGCP).
Mr. Bimal Lal Shrestha, CEO, Self-Help Group for Cerebral Palsy, said: “The results of this study are clear and reiterate what the experts at the Self-Help Group for Cerebral Palsy have been driving. Children suffering from neurological disorders such as Cerebral Palsy can reap the benefits of education if given appropriate care and opportunity.
“Of the cases traced, 89% of children we have helped to get into mainstream education are still at school, and importantly, 100% have been able to learn essential reading and writing skills which will drive opportunities for them and their families in today’s economy.”
The study was conducted by the T.N. Centre for Education (Kathmandu University), and commissioned by NGO the Self-Help Group for Cerebral Palsy (SGCP) - the only organization in Nepal which provides specialist medical, therapeutic and educational care and support to children and young adults with Cerebral Palsy, as well as their parents, via a centre in Dhapakhel, Lalitpur, and an outreach programme which provides at-home support in Nepal’s districts.
A group discussion at the seminar identified the following next steps needed: Specialist education programmes for specialist doctors, specialist education programmes for special needs teachers, a framework for government and private schools to follow in special education, funding for the set-up of specialist institutions, government policy, education - of the general populous and specifically, education of those of child-bearing age.
“There are an estimated 70,000 cases of Cerebral Palsy in Nepal. Most sufferers, their families and their local communities are not able to independently access school care or are indeed aware of the help available. We would now call upon the government and educational institutions to recognise and support the medical, therapeutic and educational care and understanding needed to support the role of Cerebral Palsy sufferers in Nepal’s future. To conclude, it is necessary to abolish the social stigma attached to Cerebral Palsy, to improve the social as well as medical condition of those affected (both sufferer, parents and community) and provide the best possible education to each and every child, through mainstream education where possible in the revised system,” commented Mr. Shrestha.
Other recommendations around the table were the provision of computers and online resources for those sufferers in the most remote of locations unable to access support. Print, broadcast and online media should also play an important role in the education of Nepal’s population.
Sanitation was cited as a problem for children in the study who continue to attend mainstream schools.
Panellists at the event were The Secretary of Education, Mr. Kishor Thapa; Vice Chancellor of Kathmandu University, Dr. Suresh Raj Sharma (Chair); Director of the T.N. Centre for Education, Dr Kedar Nath Sharma and; Professor Batuk Prasad Rajbhandari, President of the Self-Help Group for Cerebral Palsy.
Mr Bimal Lal Shrestha, CEO, Self-Help Group for Cerebral Palsy, introduced the state of Cerebral Palsy and services available , and the study findings were presented by Dr. Mahesh N Parajuli, who led the research undertaken.
Download: Executive Summary, Presentation
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