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  • : The Handimachal Programme for disabled children, Kullu, India
  • The Handimachal Programme for disabled children, Kullu, India
  • : In the (blue) House of the Himalayas, in Kullu (Himachal Pradesh, India), discover and follow the progress of the Handimachal project for disabled children.
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April 6 2015 2 06 /04 /April /2015 12:14

 

On the occasion of 8th World Autism Awareness Day, a painting and awareness program was held for special children and their parents nearby Kullu town.


Handimachal, in partnership with Dahuadhar Nirmal Chhya Parents Association, Nav Chetna School, Kaar Sev Sang and Blood Bank Kullu, organized an event which was held at Cambridge International School Mohal, Kullu.

 

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30 children along with their parents, teachers, therapists and well wishers participated in the event, wearing a blue ribbon showing solidarity to Autism awareness.


The chief guests of the event were Mr. Rohit Rathore, SDM Kullu, Mr. A K Shing (General Manager NHPC), Dr. Ravindra Shashni, Opthalmologist (Varuni Eye Hospital) and Sashi Bhushan, Special Educator (CRC, Sundernagar).


The program included talks by Miss Shakuntla Sharma on what is Autism, Home Management by Mr. Shashi Bhushan, Behavior Management by Mrs. Kanchan Dhiman and Diagnosis of Disability by Dr. Shushma Trivedi (NHPC).

 

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A painting and drawing competition was conducted for the children who enjoyed it thoroughly.


Rather than the regular speeches we get from administrative officials Mr. Rohit Rathore gave a very insightful talk about acceptance of the specialness of these children and the necessity to look beyond the social norms and conditioning. He made the children and parents dance along with him.

 

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The day’s events concluded with a sumptuous lunch organized by Kaar Seva and Blood Bank Kullu. A special contribution was made by the NHPC (National Hydro Power Corporation) staff members whom we deeply thank for having participated whole-heartedly to support the cause.


Cambridge International School, Mohal, supported the cause by making their auditorium available due to last minute changes of venue from Mohal Nature Park due to heavy rain falls in Kullu. Cambridge International School also supports Inclusive Education Model.


We hope that one day we celebrate this day as Autism Acceptance Day rather than Awareness Day!


 

Shruti More, occupational therapist,
Handimachal Therapy Unit

 

More pictures: click here.




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November 23 2014 1 23 /11 /November /2014 18:53

A nice summary of Tori's experience at Handimachal (and in Himachal Pradesh), as published in the OT Frontiers newsletter (October edition).

 

Thank you Tori for your valuable contribution to Handimachal and to children and families of Kullu district!

 


 

 

 

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Experience of an OT in India

 

Volunteering abroad has always been something I have strived to do and after working for a few years as an Occupational Therapist I realised that OT skills are so adaptable and broad, they are the perfect skills to share in developing settings. I had been following the progress of the Handimachal unit ever since I first contacted Dominique, the charity president, in 2010.  Finally due to having understanding employers who allowed me a 6 month sabbatical the right time came for me to move to India and start a new phase of my life as an OT in a small hill town called Kullu.

 

I volunteered at the project for four months, followed by 2 months travelling in India. I don’t even know where to begin in describing my experiences working in Kullu. Overall it was the most fantastic yet the most challenging experience of my life. I was lucky enough to be able to get fully integrated into a bubbling Indian community, from walking down the street every morning and getting an enthusiastic ‘Namaste’ from every shop owner, to spending evenings eating delicious veggie curries with my new ‘Indian families’, every moment was memorable and special.

 

Handimachal Therapy Unit is a non-profit charity run organisation providing free OT, Physio, Speech and Special education to disabled children of any age. Any child with a disability was encouraged to attend and due to having no set appointments or timetables our day varied from having 2 children one day to having 15 the next, but the dedicated team was very adaptable and I soon got used to this way of working.

 

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Quite a high proportion of our patients had a diagnosis of cerebral palsy, unfortunately some children were not identified to the unit until they were sometimes up to 10 years old and they would have had very little intervention prior to this. This resulted in us being presented with some very disabled children with contractures and parents who had been trying their best to manage their child but who did not really understand their child’s condition. The local government hospitals had very limited resources and had no option for regular therapy input, and certainly no OT. The team has been working hard on spreading the word through disability workshops and seminars in local schools and education sessions for teachers and parents. Most of the referrals were just through word of mouth.

 

In the local area the majority of the jobs are farming/agriculture, this resulted in it being difficult for parents to bring their children to the unit, particularly during the harvest season. We had a number of children we tried to see during home visits but due to limited staffing these visits were unable to be completed regularly. One little boy who received home visits lived with his parents and his grandmother in a village near Kullu. To access their property you had to climb up a rock face with no steps; the team had to advise his parents to stop bringing him to the unit just because it was such a risk to carry him down the rocks. Luckily he had a very supportive family who were able to continue with therapy activities between home visits.

 

Whilst I was working with Handimachal we travelled over the Rohtang pass (a 4000 metre high pass connecting Manali with Spiti and Lahaul valleys, a pretty hair raising journey to say the least!) to conduct a ‘Disability Awareness Camp’ in two of the village areas. During these two days we registered over 250 individuals with disabilities in the area. These areas are impassable by snow for many months every year and access to healthcare is very limited. We were able to provide wheelchairs, walking aids, visual and hearing aids and advice to the local people. During this time I had to really change the way I would usually work, for example providing someone with a wheelchair.  In the UK you would not provide a person with a wheelchair until you have completed a comprehensive assessment of the individual and their home environment. Whilst on the awareness camp we gave people wheelchairs that may have travelled for hours to visit us, this might be their only opportunity to be provided with a wheelchair so I had to overlook risk issues in order to hopefully improve their quality of life.

 

Whilst at the camp we also had the opportunity to stay at an amazing place which was a ‘hospital’ in a house on the outskirts of a small village called Keylong. This hospital had a small ward of about 8 beds and even an operating theatre. They had no onsite doctors, but doctors would visit when passing through from other areas and provide medical services to local people who needed it. There was one patient there who was found in his house, after being left by his family to die due to there not being any nearby medical services. He had what looked like peripheral vascular disease, and due to pain he had held his knee in flexion for a long time, resulting in contractures. When he was found his knee and foot were black and gangrenous, the carers at the hospital looked after him until his wounds were healed but did not actually know his diagnoses, they just treated what they saw, and for them this seemed to work well.

 

In time of emergency the local people often had no medical care, particularly during snow. Many women die during child birth, and if there are any complications they cannot access the medical care they need, the nearest local hospital being an 8-10 hour drive away over the Rohtang pass. Even at the hospital in Manali the services were quite limited, whilst there I heard of a man who had a motorbike accident and dislocated his knee, he needed to travel 12 hours to a Delhi hospital in order to receive treatment.

 

In Kullu there was limited access to therapy equipment and adaptations so we had to create and develop our own ideas. The OT prior to my arrival from France was particularly good at wood work and made a balance board and a wooden standing frame, all very cheap to make but made a great difference to the children. I wanted to look at making some kind of seating system, particularly for the smaller children, whose parents had to always carry around as they found it very difficult to position them.

 

I liaised with the Paeds team at the hospital I work in London and was made aware of Leckeys ‘Squiggles early activities system’. This looked like an ideal piece of equipment to use both in the unit but also to provide to parents to utilize with their children in their own home. Myself and the wonderfully creative Indian OT Shruti set about creating our own version, using pieces of bed foam and wire mesh and lots of Velcro! We were really pleased with the outcome, which we managed to make for about 1200 rupees (about 12 English pounds) and we provided our first one to a family with a little boy with Erbs Palsy who had to spend half their year buying and selling in Rajasthan, meaning they had no regular therapy input during that time. During my travels after leaving the unit I had the pleasure of visiting them in their home in Jaipur and it was great to see them using the system daily and the difference it was making.

 

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With a project like Handimachal there is always opportunity for change and development. The permanent team is doing such a fantastic job, and partnered with volunteers who bring in new ideas and ways of working it will hopefully continue to thrive and really make a difference to many children’s lives. I would recommend this project to any OT, Physio or APA (adapted physical activity) who is considering giving some time to volunteer abroad, I have taken away from it more than I could have imagined, and left with even more of a passion for Occupational Therapy.

 

Tori North

(OT volunteer, July-October 2013)



 


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August 31 2014 1 31 /08 /August /2014 13:36

Anything is possible” – this is the mantra that I have chanting since being in India. I have discovered it is possible to squeeze 10 persons into a taxi, a shared taxi as they call it here. I have hair-raisingly discovered it is possible for two buses to pass through a single lane road on a mountain pass a few thousands of metres high. I have discovered that it is possible for two drivers to stop to chat in the middle of the road oblivious to other honking drivers behind. I have been awe-struck by the ancient gompas (monasteries) that have been built, perched precariously for hundreds of years on rock outcrops. And so, a couple of days ago I have seen it possible for some of the kids with disabilities from the Handimachal Project soar across a river and get to the top of a mountain.
 

An adventure travel agency, Yeti Travels, had generously offered to organize an outing for the kids from the centre. The day started early at the Handimachal Project with the kids and their caregivers gathering at 8 in the morning.  It was obvious that all the kids and their parents were excited at the outing.  It was a day trip to the Solang Valley. For most of them, this was perhaps the first time they have been out of the town of Kullu because of limited finances or the difficulties of bringing a physically disabled kid out. It was an hour’s ride through the valley. The morning was beautiful with clear skies and the road led us through beside the surging river that had swelled during the monsoon season. In the distance, the mountain ranges gleamed from the sunlight.  We were joined by more kids from the Manali centre and the special learning centre of Daystar school at the destination.
 

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Then it was a short trek before we reached the gurgling small river. Our hosts set up three river crossings. The children then took turns being strapped to harness and helmets and they had to repel across and back the small river. The older and more able bodied kids went first and many were thrilled by the excitement of the adventure and their new found physical prowess. Then it was the turn of the younger and the more physically involved kids. Naturally most of them were fearful and it took much coaxing to get them anywhere near the ropes and the water. It was only with wonderful patience, persistence and determination that we managed to get them safely secured onto the harness and ropes and then zoomed they were off. Some continued screaming in protest but most became thrilled with zipping high above the surging waters.
 

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It was amazing seeing these kids, some who cant even sit without support or move their hands and legs defying gravity at last. Even for those with more cognitive impairments and attention issues, the activity saw them responding to the instructions and settling into a more focused awareness. The parents who were initially hesitant about having their child do the river crossing became emboldened by the achievements of the other kids and bravely lined their kids in turn. Many of the parents were surprised by the courage of their child.
 

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Lunch was prepared by our hosts and it was a sumptuous meal fit for rajahs!  After lunch, everyone gathered outdoors and were given drawing papers and crayons. The children drew and coloured and our friends gathered and sang. It was heartwarming to see the kids draw or run about playing or just sitting in their parents’ laps admist the beautiful setting of the sweeping mountain ranges.  And I thought to myself, this is what community inclusion and living is all about - people reaching out, supporting and most of all, being with each other.  After the songs and drawing, the children were treated to a ride on the trolley up the mountain. In one day, these children crossed a river and ‘scaled’ a mountain - a big and wonderful adventure!
 

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In India, some have the belief that children with disabilities have been cursed by spirits. It is sometimes difficult to watch families especially those who have little, struggle with both the material scarcity and the social stigma.  Yet that afternoon what I saw was the blessing these children received. The blessings of generosity from the friends from Yeti Travels; the blessings of passion, commitment of the staff of the Handimachal project; the blessings of their parents who love and care despite the difficulties; the blessings of courage and determination of one woman, Dominique Dufau who saw the need, started and kept the whole project going. And I see these children who have to metaphorically cross so many invisible rivers and mountains in their lives blessed by devtas.
 

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On the way back, in the bus, the driver put on his cd – a collection of Hindi folk tunes. Everyone started singing and clapping in rhythm to the music. Almost a Bollywood scene. There was such a joie-de-vivre. Even the little girl who is hearing impaired impishly clapped and swayed to her own rhythm.  When we got stuck in a traffic jam, nobody seemed to mind and continued singing and clapping.  I could see that everyone was tired from the outing but there was a palpable sense of joy. As the bus sped homewards towards Kullu and the stars climbed out into the night sky, I could feel the bus rollicking from the sheer happiness of the passengers.

Wai Ming Leong, OT volunteer from Singapore
(who just finished his mission in Kullu)


Thank you Wai Ming for the lively narration of this exceptional day.  And all our gratitude to our friends from Manali (including Yeti Travels, Himalayan Frontiers and I
nstitute of Mountaineering and Allied Sports) for supporting the Handimachal team's initiative. 

 

See a selection of pictures here:

 

For Facebook friends, more pictures on our Facebook page (please share!)

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August 3 2014 1 03 /08 /August /2014 14:10

 

Do you know what APA means?


It means Adapted Physical Activities. APA was first started in Canada during the seventies. The idea of APA is to use different kinds of physical activities and exercises which are adapted to a person with special needs to improve his/her mobility, health and cognitive functions. The APA teacher is a professional with a background in health and healthcare, sports and body functions.

 

 

 

What does an APA volunteer do in the Day Star School ???

 

Professionals and volunteers from Handimachal regularly go and meet children with disabilities living around Manali but also the kids with special needs who study in the Day Star School learning centre.

 

I am an APA volunteer at Handimachal and arrived in Kullu in April 2014. I started to get to know the kids of the centre through games, such as the parachute, where everybody played together, collaborating and having fun!

 

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The parachute game: everybody can find a way to play together !
The parachute helps!

 

After getting to know the kids, the APA volunteer plans an activity programme corresponding to the kids' specific needs. This could be in the areas of balance, concentration, coordination. But first of all they need to move and play to improve their physical capabilities! Like everyone !

 

APA works not only on physical capabilities, it can also be a way to improve academic knowledge (e.g. colours, numbers, understanding and following rules), self-confidence, and health (e.g. diabetics, obesity).

 

Twice a week the kids of Day Star School can enjoy APA sessions in order to improve their physical capabilities, the knowledge of their bodies, and to have the opportunity to play with each other, respect each other, following rules, getting to know new physical activities.... and enjoy!!

 

 

Glimpses of moments spent together:

 

 

 

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  Relay, learn to be a team, run, jump....  

 

 

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APA DSS jeu du facteur 
 Orientation game:  look, run and find!  Running after each other during the postman game: the child learns to wait his turn, to be attentive, to run!

 

 

APA in Day Star School Manali, every Tuesday and Thursday mornings.

 

Florianne, APA volunteer (France)


 

Many thanks, Florianne, for these moments of fun and joy given to special needs children in Kullu and Manali.

 

Florianne will finish her mission at the end of this week and will be relayed by Maïva, also from France, who has already reached India.

 

I would also like to thank very warmly our current OT volunteer from Singapore, Wai Ming Leong, who is bringing his experience and expertise to our team. Wai Ming will be with us until beginning of September.

 

We are also priviledged to welcome a new speech therapist volunteer from the UK this week:  Abigail Page will reach Kullu on 5 August morning for a two week mission  - it is of course a very short mission but much required for the enhancement of our quite new speech therapy practice.

 

Not to forget Marion Faure, a young OT from France who has been helping me managing the project since the beginning of this year:  over the last two weeks, she has been able (at last!) to discover the Handimachal Unit and the team, some of the children and their parents, discuss some clinical issues and organisational points, get an insight of the local community.  Merci Marion !

 

Finally, I will be leaving back to France at the end of this week, after spending six weeks in Manali and Kullu (and other magical areas of the Indian Himalayas).

 

Handimachal is making big steps towards the community nowadays, and this will be the subject of my next post, hopefully before I leave Kullu valley.

 

Thanks to all of you for your support in this extraordinary adventure.

 

Dominique, 3 August 2014



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July 3 2014 5 03 /07 /July /2014 04:21

 

 

Back in the UK after my 3 months working with the Handimachal project, my head is still full of it!


Apart from supporting the ongoing work of the local therapy team, my particular task agreed with Dominique Dufau had been to contribute to the development of the outreach programmes of the project and to encourage further networking with local and regional services.


Since the beginning of March when I first arrived much has happened. As Shruti More, the local Occupational Therapist (OT) described in the last Blog, seven community-based rehabilitation (CBR) workers have been trained and three excellent people have been appointed as community support staff covering the rural area served by the Unit from Kullu to Manali. Their training lays the foundations for a more comprehensive system of home intervention for local children with disabilities and will provide greater support for their families. The new CBR workers have been provided with a core training put together by Shruti, and ably supported by the special educator Shakuntla. The training represents a convergence of current thinking and evidence, and provides therapy resources that underpin community-based best practice world-wide.

 


The new CBR workers have had a huge amount to learn and take on board. I am sure that with time they will build up invaluable experience and resources to complement and support the local therapy team. The physical environment of the Kullu Valley, the pressures on local families and just the mountain weather - all confirm the need for there to be a focus on a community-based service. This focus is essential in order for the needs of local children with special needs and their families are to be effectively met.


Recent research is showing that careful adaptation of the environment of a child with a disability can be as effective as trying to change the child (Law et al, 2013)(1). Certainly environmental adaptation is a key part of any intervention with a child with special needs. We need to focus on providing supportive equipment for children with cerebral palsy, such as the standing frames and special chairs seen here and made together with local carpenters. We need to educate families and demonstrate to them within the context of their own homes, how to help their child develop everyday life skills, for instance to eat and drink safely, and communicate even if they cannot speak.

 

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 Standing frame:  Assessing the child's ability
to gain autonomy of the upper body and strenghtening
his lower limbs
 Special chair:  a new world of opportunities
offered to the child, and some rest for the mother!



Working closely together with CBR workers will make the Handimachal project more sustainable. Knowledge about disability will be more widely shared within the community while the therapy team can provide a much needed ongoing regular overview of what is working, what is not working and what the child and family need next.


More regular links and networking opportunities with Dr Sheila, and via Ben Oni, with the Mumbai based ‘All India Alliance for Inclusion’, will also help the Handimachal Unit strengthen its support structures.


While it was very challenging as a UK OT to understand how to effectively work at the Unit, it must be exceedingly difficult for the local therapy team to accommodate the ideas of the foreign therapists and APA workers who come to volunteer but have little understanding of local conditions! I think we allshifted our ground. In my case I know I did, gaining new respect for the challenges of working in this environment.

 

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I am hopeful that where I have offered new information and resources considered by the local team to be of value or can be adapted so that they are, that this information becomes ‘owned’ . Only then will it be brought into use by the local team of therapists and then shared with the CBR workers.


I very much look forward to following the Handimachal Blog and hearing how the CBR continues to grow and flourish based on recognised evidence and on the experiences of shared best practice, so that the needs of children with special needs and their families living in the Kullu Valley can be fully met.

 

Tina Gericke,
OT volunteer, March-May 2014

 

(1) Law et al (2013) Focus on function: a cluster, randomized controlled trial comparing child- versus context-focused intervention for young children with cerebral palsy.

http://www.ncbi.nlm.nih.gov/pubmed/21569012

http://www.canchild.ca/en/ourresearch/resources/KTlaysummaryver12.pdf



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May 11 2014 1 11 /05 /May /2014 08:45

A post by Shruti More, our permanent OT in Kullu

 


 

Community Based Rehabilitation is a strategy within general community development for the rehabilitation, equalization of opportunities and social inclusion of all people with disabilities. The primary objective of CBR is the improvement of the quality of life of people with disability / marginalized persons. Key principles relating to CBR are equality, social justice, solidarity, integration and dignity. 


CBR is not an approach that only focuses on the physical or medical needs of a person or delivering care to disabled people as passive recipients. It is not outreach from a centre. It is not determined by the needs of an institution or groups of professionals, neither is it segregated and separate from services for other people. 


Conversely CBR involves partnerships with disabled people, both, adults and children, their families and communities. It involves capacity building of disabled people and their families, in the context of their community and culture. It is a holistic approach encompassing physical, social, employment, educational, economic and other needs. It promotes the social inclusion of disabled people in existing mainstream services. It is a system based in the community, using district and national level services. 


Institutional rehabilitation provides excellent services to address the problems of individual disabled person and is often available only for a small number at a very high cost. Moreover, the endeavor in an institution, is often out of context to the felt needs of the disabled person, and thus falls short of their expectations. In an institutional rehabilitation program, the community is not linked with the process. Hence, when the disabled person returns home, it may become difficult for them to integrate into their community. Disability often requires life-long management, therefore, activities aimed at enabling people with disability should be community based as much as possible. The most basic rehabilitation activities can be carried out in the person’s own community.


In every society, disabled children have the same social needs as other children. They need to be loved and respected, need to play and explore their world with other children and adults and opportunities to develop and use their bodies and minds to their fullest ability, whatever it might be. The way people treat disabled persons differs from family to family, community to community and country to country. 


 

 

 

Since the foundation of Handimachal in 2009, providing training to local community in the field of disability and rehabilitation has been one of our main objectives. We had already taken some steps in this direction by conducting awareness camps in villages and schools, and organising workshops for teachers and parents. 


Our motive with conducting the Community Based Rehabilitation Training Program is to look at ways to actively involve members of the community (disabled persons, their families, concerned adults, and others) in meeting the needs of disabled children and in helping them to find a meaningful place in the community.  We are looking for ways to help the community respond more favorably to disabled children and their needs. Usually of course a village or a neighbour does not decide, on its own account, to offer assistance, acceptance, and opportunity to disabled persons and their families. Rather, disabled persons and their families must begin to work together, to look for resources, and to re-educate both themselves and their community. Finally when they gain enough popular understanding and support they can insist on their rights.  


We shortlisted five motivated women and one mother of a special-need child, and these six women are undergoing a month-long intensive training to become trained community rehabilitation workers. Out of the six women, we will select three women to work with us for a period of one year in our outreach programs


CBR workers are key in the implementation of CBR. They are usually the main persons in contact with families. Their main role will be: 

 

  • to act as local advocates on behalf of people with disabilities and their families with the health services personnel,
  • to provide liaison and continuity of care in the community on behalf of professionals eg. they will continue the supervision of our home-based programs,  
  • to act as directors of community initiatives to remove social and physical barriers that prevent inclusion, 
  • to provide a positive role model for service users if they themselves have a disability. 

 

 

The course structure has been based on the framework of a manual called “Getting to know Cerebral Palsy (see below), which was introduced to us by Tina Gericke, a senior OT volunteering with us at present. The course syllabus is based on the book “Disabled Village Children’’ which is available in Hindi and a “CBR Training Manual” edited by CBR network Asia. Hindi being a widely spoken and understood language here, we had to translate most of the syllabus in Hindi.


Designing an appropriate syllabus which covers our area of focus and keeping it simple but informative and educative enough for the community workers to comprehend was a challenge. Though Cerebral Palsy is our major case load, we have covered a range of other childhood disabilities too. The course structure is made practical and functional, with a lot of case studies, practical demonstrations, discussions and activities.


We are glad to have an interactive and enthusiastic bunch of women trainees. We just had our first home visit with them last week, and we could see the positive results of the three weeks of hard work put in by us. We are positive that these trained community workers will provide Handimachal with some extra helping hands to make a difference in the lives of our special need children. The CBR training ideals have been beautifully depicted in an old Chinese verse:

Go in search of your People;
Love Them;
Learn from them;
Plan with them; Serve them;
Begin with what they have;
Build on what they know;
But of the best leaders when their task is accomplished, 
Their work is done, the people all remark: 
"We have done it ourselves"

 

Thank you to everyone for making this happen in Kullu !

 


Discover the model developed by the London School of Hygiene and Tropical Medicine:

http://disabilitycentre.lshtm.ac.uk/getting-to-know-cerebral-palsy/


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May 4 2014 1 04 /05 /May /2014 21:50

Our young friend Saggar is probably our most regular patient in the Handimachal Therapy Unit, always smiling and active in his sessions - and still, his family story is quite sad.

Discover Saggar's stody, told by our permanent OT Shruti More, during Dennis Little's stay in Kullu (on a video showing Saggar in his daily life).  

And by the way, Saggar and Prakash Thapa are cousins...

 

 

Thank you Dennis and Shruti, thank you Saggar for being with us!

Dominique

 

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April 22 2014 3 22 /04 /April /2014 16:18

Dear friends, 


Although I am late in posting you with what happened in Kullu recently (which will be done very soon hopefully), I do not wish to delay more this very exciting information: Handimachal just launched its first community-based rehabilitation programme!

 

Shruti will tell you all about this CBR Training Programme at the end of the first week of this training which began yesterday morning with 7 "students", so let's see the first pictures received from Kullu - with special thanks to Tina Gericke (OT volunteer, who introduced this project), Benoni, Shruti and Shakuntla, Mayur and Maitrey (our new speech therapist), Auntie and Ramneek, and of course Flo (APA volunteer).

 

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And more news to come very soon on this blog!

 

Dominique & Handimachal team, Kullu
22 April 2014 

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February 10 2014 2 10 /02 /February /2014 21:22

A beautifus post by Shakuntla, Special Educator:  the original text in Hindi is followed by the translation into English made by Shruti - thanks to both of them.

 


 

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A Special Journey


Working with special need children is a special experience, which makes us special too. As a special educator I have experienced this specialty closely. There is something special in every human being, the need is only for it to be recognized. If one child has an inclination to be a doctor then some other child has an inclination to be a clown. Point here being, if one person can help people in their illness by being a doctor another person can make people laugh in their sorrows by being a clown. Like both the butterfly and sparrow can fly, the extent of their flight varies but that does not make any one of their flights less significant.


Working as a Special Educator at National Association of Blind, for 5 years made be recognize and appreciate the specialness of children’s. Working at Handimachal gives me an opportunity to develop my skills even further. Working with these children requires a lot of patience’s and dedication. Everybody knows what patience’s is, we all can demonstrate that skill when time comes.


But working with Dhruv, a 5 year old child diagnosed with Intellectual disability, the word patience took a new meaning for me. Dhruv is local resident of Mandi district of Himachal Pradesh. Dhruv along with his mother have relocated to Kullu only to avail the benefits of therapy. Only with an aim that Dhruv will be able to learn something, Dhruv’s mother has been staying alone in rented accommodation, away from her family. Dhruv has been coming regularly to the Unit for over 3 months now. After initial assessments and drawing baseline skills, we formulated a Therapy Plan for Dhruv. Born at home under a home nurse’s assistance, Dhruv did not cry at birth. He had some medical complication thereafter and the Doctors had told the parents that Dhruv would not be able to walk or talk and would be bed ridden for the rest his life. The parents were highly discouraged and were in a state of shock. As Dhruv grew up, he attained his developmental milestone slowly. He began to walk by 3 yrs, but there was delay in his cognitive and communicating skills.   On a referral by a Hospital in Manali, Dhruv’s parents bought him to Handimachal.


Being an Attention Deficit Hyperactive child, our first goal was to bring his hyper activeness in control.  Dhruv started coming to the Unit at 10 am every day. The initials days were very tough for Dhruv, myself and the mother. Dhruv would not sit in a place, would not concentrate on any task. The entire session time went in running around Dhruv. Gradually as time passed, Dhruv became less anxious and comfortable with the Unit atmosphere. It was decided to work of his excess energy first, by involving in rigorous play activities and providing him with all the sensory stimulation he needs. Many a times I used to drain out of energy but this child would still ask for more. The mother used to often get anxious seeing Dhruv this way, she wondered if a child would ever be able to learn anything meaningful and be like other children.


Gradually Dhruv’s sting tolerance increased and he began to cooperate in the tasks. I began working with peg boards of fruits, animals, vehicles, alphabet boards and Dhruv started taking interest in the activities. His sitting tolerance had now increased with more concentration at the task on hand.  He stared speaking more words than before. The three month goals set for him were achieved.


Dhruv’s mother is satisfied and relieved to see her child make some progress. The place of initial anxiety and hopelessness in the mothers mind has now taken place by a positive attitude and courage. She is slowly but surely coming in terms with her special child. Her expectations from Dhruv are more realistic. After seeing other more complex need children at the Unit, the mother was able to better empathize with other parents and gained strength to face the challenges of raising a special child.

 

All these changes took place in Dhruv and his mother after they came to Handimachal. This Mother and Son duo are more than happy to come to Handimachal every day. One more attempt of Handimachal of making a difference is coming true…hand in hand in Dhruv we are!

Shakuntla,
Special Educator, Handimachal Unit Kullu 

 


 

 

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February 6 2014 5 06 /02 /February /2014 22:18

Whatever work you do is supposed to make a difference, and it does. In our case, the difference lies in what Handimachal has been making in the lives of the many special need children of Kullu valley.


Prakash Thaapa is one such special and ironically lucky child. Prakash was bought to the Handimachal Therapy Unit by his parents at the age of 10 in 2010. He was diagnosed a case of Diaplegic Spastic Cerebral Palsy. He was brought to the Unit by his mother 2-3 times a week for therapy sessions. The mother was involved in the therapy and cooperated to follow the home program. Being a diaplegic CP, Prakash had a fair to good prognosis provided the therapy program was followed up.

 

DSCN2536

Prakash Thaapa in 2010


As time passed, Prakash’s visits to the Unit became less frequent and eventually stopped. Sighting the reason that both the parents were now working to provide for themselves and their family and seeing no quick progress in Prakash, the mother became progressively reluctant to follow any therapy advice provided by the therapists.  Arrangements were made by the team to get Prakash at the Unit, for half a day without his mother’s presence. But the increasing indifference showed by the parents made the little intervention provided by the therapist seem futile. We did not see Prakash for more than a year since mid-2012. In the meantime, Prakash’s family moved into new locations, their telephone number changed, the parents started to avoid any interaction with the team. The family went through a turmoil when Prakash’s father abandoned the family briefly and remarried. The mother was now forced to work extra to provide for herself and her other two children. Prakash was neglected in the course of events and was kept unattended at home for hours. The state in which Prakash had to survive was inhumanly unhygienic to say the least.  This could have been then the end of Prakash’s chapter for Handimachal.


But because of our founder Dominique Dufau’s relentless persistence and motivation to “push back the limits of accessibility and mortality’’ as a constant reminder to the team in Kullu, the team was assigned the task to relocate Prakash and assess any option available to support him. It took a few months to relocate Prakash, and as it turned out, he was indeed a cousin brother of Sagar, one of the children who have been regularly coming to the Unit for his therapy. With almost lost hopes to be able to relocate Prakash, he was in fact very close to the Unit, about one kilometer away only.


A rehabilitation process is more than often a long-term to a life-time intervention. Therapists can facilitate a rehabilitation program but parents and caretakers should be the ones responsible for the major part of the rehabilitation process if any positive developments should take place in the child.


For some parents, just trying to comprehend the disparity between their desires for their child and the disability that exists compounds their emotional and intellectual efforts to adjust to the situation. They may feel grief, depression, anger, or shame. Some may also ask questions such as “why me ’’ and conclude that they are being punished for sins or bad acts of past. Depending on the severity of the disability and the magnitude of the demand for coping, a few parents may even contemplate death for their child or themselves. These thoughts represent an all-encompassing need to achieve inner peace.


Prakash’s mother has gone through all these stages over the years and had reached a state of acceptance, a stage of acceptance with negative regards of any positive development to happen in Prakash. She has resigned to her fate, deciding to look after Prakash till her or his last breath. She had even denied an offer made to keep Prakash in a hostel, stating that she wanted to still keep Prakash in front of her eyes, at the end of the day.

 

Prakash and Shruti
Prakash and Shruti (January 2014)


Now that we have relocated Prakash, our goal is to counsel his mother to encourage her to get Prakash to the Unit, explaining to her the benefits of therapy and the more holistic approach of treatment. The mother now works at a chicken shop, close to the house. The proximity of her house and shop, has helped her to keep tab on Prakash and manage his feeding and toileting more efficiently than before. But there was no follow up on his therapy regime at all. Lots of talking, discussions, problem solving followed, with ultimately wooing the mother by providing momentary compensations. We offered to her a financial grant every month to take care of Prakash needs, if she could get Prakash at the Unit at least thrice a week and follow up on a home therapy plan. Some of our kind donators offered to sponsor for this arrangement for Prakash.

 

Prakash during a speech therapy session

Prakash and his mother during the speech therapy assessment
with Veena (January 2014)


The mother accepted the offer and has started to get Prakash to the Unit from the last month, with 3 to 4 visits per week. The mother has agreed to be involved in the therapy program for a year and has communicated very clearly to the team that, if she does not see any improvement in Prakash she would discontinue thereafter. Counselling the mother continues to the biggest challenge of all. We have our doubts her ability to actively participate in the therapy program at the Unit and at home, in absence of which any considerable improvement in Prakash condition would not be possible.

 

Prakash enjoying an old gamePrakash enjoying his old game (January 2014)


With no intentions of judging the mother or the family or their conditions, we have to admit that Prakash is in a sorry state of affairs. Had his therapy plan been followed since the beginning of his registration in the Unit three years ago, he would have had a better chance of a fair prognosis. Lost time cannot be bought back, the goal now for the team is to provide Prakash with the fairest chance to be able to develop in a holistic way. Sensitizing, empathizing, educating and supporting the mother are equally important.

 

Prakash on his feetHand in hand with Prakash (January 2014)

 

Prakash has been more than happy to come to the Unit, he is motivated and cooperates better each passing day. Hand in hand with Prakash and his mother Handimachal will continue to try its best to provide a ray of hope in the life of this family. 


Shruti More, occupational therapist
2 February 2014 



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