Project Update – Training Manuals

It’s hard to believe that half of the project is already over!! Apologies for the lack of posts – It’s been hard to document exactly what I’ve been doing because much of my role hasn’t been tangible.

To summarize, I came to India at the beginning of October with rough ideas of how our team of 16 volunteers could contribute to Samuha Samarthya in a sustainable way. Don’t get me wrong – Samarthya is doing an INCREDIBLE job, helping hundreds of children through their various programs. They are one of the most dedicated organizations in the state of Karnataka (and won an award last year for it!).

As an international volunteer, it was so tempting to fly in, help a bunch of patients, get that happy feeling inside because you’re helping these super-cute amazing kids and lovely adults, and then fly out, but that would have left the organization no better than when we found it.

Here were our original goals:

  1. Improve the Community-Based Rehabilitation (CBR) training manuals (which haven’t been updated in 20 years!)
  2. Hold theoretical and practical educational sessions for the CBR workers to improve and standardize the level of care being provided in the Early Intervention Centres, the Spinal Cord Rehabilitation Unit, and other community outreach programs.
  3. Hold educational sessions for caregivers, school teachers, and other community members to maximize care and inclusion of people with disabilities in these rural communities.
  4. Increase efficiency of the organization by piloting and implementing new ventures such as a loan equipment program
  5. Teach the local CBR-Workers to be teachers, so they can continue to educate their colleagues and future newcomers to the field, and not rely on Canadian volunteers for education
  6. Raise awareness of Samuha Samarthya by facilitating Canadian volunteer experiences (physiotherapists and orthotists). There are a total of 17 other clinicians and students coming for 1-2 month stints throughout the project!
  7. Raise awareness for global health and create avenues for discussion about international volunteering in general, as I hope some of these volunteers may have the desire to contribute to other international projects. It is crucial to understand what type of volunteer work is beneficial for these types of NGOs, as we will be aiming to empower the local workers rather than doing the clinical work ourselves. We don’t want to parachute in, work, and leave, as that would leave the organization no different than when we found it.

Things changed from the second we hit the ground. It quickly became much more complicated as I peeled back the onion and found layers and layers of issues… and it took the whole first two months to really suss out what was happening at Samarthya. During that time, I really got to know the staff at a personal level and they shared their joys and challenges of their jobs. Through these conversations, I was able to gain their trust so they might be more open to our suggestions over the six month period.

Phase 1 (Oct-Nov): The first group of volunteers (Jen Tam and Julie Alexander) played vital roles in observing and inquiring about the technical skills, procedures, systems, and team dynamics. They asked why, why, why for each issue that came up, and found multiple levels which needed some work.

Here was the tricky part that applied to all goals: what level could we realistically affect in the 6 months to create a lasting change? Some issues were quick fixes (ie, implementing referral sheets to send clients to the workshop for splints) and some issues were stemmed as high as the board level. We couldn’t tackle it all.

Let’s look at goals number 1 & 2 for now – in October we started looking at the old training manuals and agreed that they needed to be updated. In addition, several junior workers had been hired recently and they hadn’t been trained formally yet in theory or practical skills. So as we were researching the information to update in the manuals, we were spending time observing and working with the CBR workers.

Challenge #1 – There wasn’t a standardized level of knowledge among the staff, so what was the appropriate level of difficulty to include in these manuals?

Challenge #2 – All CBR-workers were full to the brim with work and they wouldn’t have time to study these manuals. Why were they so busy?

Challenge #3 – Inefficiency. High-skilled people were doing low-skilled jobs; there was no designated administration person so the senior therapists were doing things like computer data entry, scheduling clients, and settling bills, and therefore clients couldn’t be seen. Additionally, it seemed like other processes were taking 2-3 steps more than required.

Because of this, seniors didn’t have time to train the juniors, and therefore the juniors weren’t capable to help with the high volume of clients.

NEW GOAL: Create a 6-month training schedules for the Early Intervention Center with set teaching modules for senior therapists to train the junior therapists in-house, so seniors could be free to do other much-needed work. Our goal is to streamline some Early Intervention processes = more free time for seniors = more opportunity to train juniors = spread out the workload and ensure a succession plan for the future.

Additionally, there were no therapists that were formally trained for the Spinal Cord Rehab unit. ADDED GOAL: Create a training manual and provide educational sessions about spinal cord injury to educate two new therapists who will run camps for men with spinal cord injuries.

Phase 2 (Dec): Physio Jen Waring observed and surveyed the junior workers, asked them what areas they wanted more knowledge in, updated a skeleton of the training manual and suggested a 6-month training plan. Physios Sarah Monsees and Larissa Vassos were based in the Spinal Cord Rehab Center and created a 30-page manual, starting with basic theory of spine anatomy, nervous systems, and more. They ran multiple evening teaching sessions a week that dramatically increased local workers Channappa and Meheboob’s knowledge and skills, and helped them run a 1-month camp for four men with spinal cord injuries. They also created exercise boards to help with compliance in the gym. IMG_4449

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The volunteers have exercised skills FAR beyond physiotherapy. We’ve been challenged with curriculum development, teaching, organizational development, people management, budgeting, and of course, doing all of the above across a language barrier.

Thanks Jen, Sarah, and Larissa for ensuring success in Phase 2!!

Next update: Scrapping goal #4, delaying goals #3 & 5, and adding very important goal #8!

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Functional Adaptation for Familiar Faces

Two years ago, I had the pleasure of meeting Gousiya, Mustafa, and Abdul, three siblings who are all diagnosed with muscular dystrophy. With donor funding, we were able to provide their family with a wheelchair to transport the kids to and from school, a small desk to enable them to do sit upright while doing homework, and splints for Abdul, to prevent progression of his calf contractures. Read their full story, and learn about muscular dystrophy here.

In my first week back, I discovered that Samarthya has continued their involvement with this amazing family by funding and orchestrating the construction of a toilet!

Abdul, Gousiya, and Mustafa (L-R0, Oct 2015

Abdul, Gousiya, and Mustafa (L-R0, Oct 2015

Previously, their mother Rashida was carrying each child to their uncle’s home (nearby, but still inconveniently far enough) to use the toilet. As the children have grown, this became increasingly difficult for her, eventually causing her severe back pain.

Samarthya’s Functional Adaptation Program, with lots of work from the German volunteers Fabian and Jonas (who produced the summary below), improved the quality of this family’s day-to-day lives by alleviating some of Rashida’s physical demands. If you want to see the process, or if you happen to want to learn how to build an Indian out-house, check out the photos below!!final feedback report-page-002 final feedback report-page-003 final feedback report-page-004

India Weeks 3-4: Progress at each campus, and farewell to Julie!

It’s hard to believe a month has flow by already, and that volunteer Julie’s time at Samarthya has come to an end!  As we stated before, our goal is to further develop and strengthen the centers in the four following campuses:

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The Early Intervention Center in Koppal is a well-oiled machine. The Senior CBR-worker Prabhakar is highly skilled with the children, and is focused on providing education for the families. He truly strives to empower the parents to be the driver of their own child’s healthcare, and tries to decrease their dependency on him. Julie had several discussions with him and suggested some time-saving strategies to make him even more efficient. She created an exercise sheet template to increase parent compliance and decrease his stick-men drawing time. She also discussed the possibility of implementing group sessions, as many of the children present at the same stage of development.

IMG_6333Prabhakar’s dream is to have multiple clinic spaces (currently only one treatment room) staffed by three assistants, and to hire a recruiter to visit villages, meet with doctors and other health care professionals, and provide simple education sessions to surrounding community members.

The Early Intervention Center in Deodurg needs quite a bit of help – it seems like operations are all over the map. Volunteers in December will be dedicating most of their time to analyzing the processes and suggesting some time-saving strategies to also appropriately increase the reach of the services in the area.

In Raichur, we are hoping to launch an Early Intervention Center!! Raichur is a town of 200,000 people and there are NO services for young children with disabilities. Currently there is a workshop there that is struggling for business. We’re trying to estimate the cost of this start-up which can then contribute to the workshop orders, and luckily we have two existing successful Early Intervention Centers to base our plans on.

Senior Workshop Technicians Basuraj (L), Ashok (R), and CBR-Worker Babumiya (middle) dream to have busy, smoothly running EICs in Raichur and Deodurg and an efficient workshop set up to allow them to serve more villages in these areas. They also wish for a mobile workshop (via a kitted-out van or autorickshaw?!) to bring services to those who can’t come to them. Imagine that!

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Here are a couple of photos of the current workshop – we’re hoping to move the main manufacturing center to Deodurg, have only a satellite clinic in Raichur, and use the existing bright and colourful space for therapy for little kiddos!

IMG_3585 IMG_3586The Spinal Cord Rehabilitation Center currently needs the most attention. There aren’t any fully-trained therapists working there and it’s currently running a major deficit due to low attendance. The main reason for the lack of patients is that most families cannot afford the Rs.4000/month cost ($80CAD) even though the patients would really benefit from the service. Also, a lack of an on-site medical professional make it even less attractive.

Physio volunteer Jen Tam has travelled along very bumpy village roads to do home visits for patients with spinal cord injuries and has been observing the current “short-stay camp” – a week-long camp for 7 old and new patients (see photos below) to get together and review exercises and gain support from their peers. Jen has come up with several great ideas:

  • hiring a part-time nurse to care and educate staff and patients on wounds
  • having a day of ‘stations’, where patients get to try various vocational and leisure activities (instead of just talking about the possibilities). Some ideas include caring for chickens to produce eggs for income, learning how to garden while being in a wheelchair, and learning to play wheelchair basketball
  • holding short-stay camps several times per year versus trying to recruit patients for 3-month long stints

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We’re choosing two staff members to send for a 10-month distance education training program through the Association for People with Disabilities (APD) based in Bangalore to really increase the quality of care that we provide for these vulnerable clients.

One more round of thank-yous to Julie Alexander, who’s creativity and problem-solving skills contributed highly to this project!

farewell julie

Next up – what factors do we need to consider when making human resource decisions in a rural Indian organization?? Hint: it’s verrrryyyy different than hiring and firing in Canada!

The Puzzle of Pediatric Physiotherapy

(Originally published on OrthoCanada’s blog, July 29, 2014 – here)

Physiotherapy is a never-ending puzzle. That’s the challenge of this profession – we are constantly being driven to expand our anatomical and functional knowledge, amp up our kinaesthetic abilities for assessment and treatment techniques, and cultivate our movement creativity.

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In 2011, I completed the Master of Physical Therapy program at the University of British Columbia, and graduated with similar knowledge and experience to the other 66 students in my class. I was given the opportunity to work at Kids Physio Group, the first private paediatric clinic created to serve the greater Vancouver area. Entering the world of pediatrics right after graduation was daunting, as I was concerned that I didn’t possess enough pieces of the puzzle to enter this realm. I felt I hadn’t learned sufficient anatomical or functional knowledge regarding a kiddo’s growing body, nor was I prepared with any specialized treatment techniques for the plethora of pathologies that might present in the pediatric world. I also didn’t think I was very creative (as I believed I was always more “left-brained” and factual). Needless to say, I was hesitant to start a career in such a specialized field. Now, after three years of working at this unique facility, I realize that the physiotherapy aspect of this job is only a small piece of what makes paediatric physiotherapy such a puzzle.

The complexity of cases in paediatrics never ceases to amaze me. This past spring, I met an amazing 4-year-old girl who was born to a substance-abusing mother. She and her twin sister were adopted into a phenomenal and passionate family who goes to great lengths to give them all they need and more. This young girl was diagnosed with diplegic cerebral palsy, has an array of serious gastric issues and associated surgeries, and is completely hearing impaired (which has led me to late-night googling of physio- and play-related sign language and using my NetFlix account to access “Signing Time”). I’ve learned to quickly set up a puzzle, stabilize this squirmy child’s pelvis to help her step up onto a box, and simultaneously sign “Great job! Again!” ten times in a row while wiping my glistening brow in between reps. And despite all of the challenges she faces on a daily basis, this girl is a determined and strong-willed child whose cheerfulness is infectious, and I look forward to problem-solving all aspects of her treatment and learning from her every week.

It’s slowly becoming clear to me that family structures and social dynamics are complex and can strongly contribute to a child’s success in a rehabilitation setting. As a late-twenties young professional who has very few friends with children, I had to dig deep into the memory bank to empathize how it might feel to be in highschool at 15-years-old, living under my parents roof, and worrying that if I might not be a part of the popular crowd if I didn’t make the cut for the volleyball team because my physio told me to rest my knee. I’m understanding that kids are pressured from all directions – school, peers, sports, and home – and these puzzle pieces need to be taken into account as I create my overall treatment plan.

Many therapists may agree that perhaps the largest puzzle piece in paediatrics is solidifying a child’s buy-in and compliance to complete an activity that causes discomfort in the form of pain or difficulty. We see many children and youth of all ages that require a regular stretching program, but as many of us know, stretching is uncomfortable and boring. Similarly, some children present with lower muscular tone than average which limits them from participating to the same level as their peers. A regular strengthening program is the typical course of action however the trick is to devise a series of games or activities that encourage the child to complete the recommended sets and reps despite ‘feeling the burn’.

Additionally, I’ve learned that it’s crucial to establish authority within the first few sessions to maximize the therapeutic relationship between myself and the child. Building a solid sense of trust through exciting games, meaningful conversation, and fulfilled promises for rewards and end-of-session “Thomas The Train” stickers leads the child to happily participate throughout the intense 45-minute treatment session.

Pathologies and conditions certainly differ between the adult and child populations, but paediatric physiotherapy is so much more than the anatomical and physiological side. It is an art that combines mastering behavioural strategies, possessing continual ingenuity for games and obstacle courses, and having an ability to relate to any child regardless of their age, cognitive ability, or physical state. Nothing in school could have prepared me for this extensive puzzle, as I’ve found that much of this can only be learned through on-the-job successes and even greater failures. I still get a bit nervous when a new assessment walks through the door, but get excited as I start to unfold various pieces of that puzzle. After all, it is fascinating to witness the progress that evolves when those puzzle pieces come together and overall picture of a child becomes apparent.

Family Focus (squared) – Muscular Dystrophy


At Kids Physio Group in Vancouver, I have treated close to 300 different children and have only seen a spatter (maybe two to three) who have had a diagnosis of muscular dystrophy (MD) of any kind. For those not in the medical world, muscular dystrophy is an umbrella term for a group of conditions that are characterized by a weakening of the body starting at the muscle cell level. There are many types of MD; some types are non-progressive and these children work very hard to gain as much strength and function as possible. Other types are unfortunately progressive, as these children often develop normally and then experience difficulties such as tripping and falling in later childhood. Some types are so quick to progress that they are heartbreakingly fatal.

Genetics 101: In reproduction, there are 23 total pairs of chromosomes (the molecular strings of DNA), one of those pairs determines the sex of the baby: X + X = female, and X + Y = male. In one of the more common types called Duchenne’s Muscular Dystrophy (DMD), the mother is often the carrier of the gene and doesn’t show any signs, and then passes on her X gene to any sons who will then express the disease. For the visual learners out there:

DMD chart

DMD is a fairly rare condition with an incidence of 1/3600 boys and is even rarer for girls (stats actually unknown due to rarity, we’ve read that the carrier genes can be activated due to other cell functions). The genetic combination results in a mutation of the dystrophin gene coding for a main muscle cell protein. The result is progressive damage and fat infiltration into each muscle cell and an inability to repair itself, leading to a non-functional muscle. First those muscles closest to the trunk are affected, and as the disease progresses it affects limbs, lastly affecting the hands, face, and cardiorespiratory muscles eventually ending life around 20-25 years of age. It’s an awful disease.

Now that the genetics lesson is complete, let me introduce you to two amazing families with rare genetic odds. The first family has three children: Mustafa (12yo, boy), Gousiya (10yo girl), and Abdul (8yo boy). These happy and smiling kids live with their mother in a family member’s house, as their father passed away a few years ago and they have no property of their own. Upon seeing the functional level of these children, we knew that Samuha intervention would greatly improve their lives: Mustafa and Gousiya can no longer walk, and rely entirely on their mother to carry them from room to room. Abdul currently is toe-walking and is no longer able to run, and as the disease progression happens in specific stages it will only be a matter of years before he will be immobilized like his older siblings. Because of the timing and presentation (i.e. tripping and falling around 5-6 years old, no longer walking by 10, etc), all three of these siblings appear to have Duchenne’s Muscular Dystrophy.

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Mustafa, Abdul, Gousiya and their mother in front of their house

The second family lives in a gorgeous farming village called Hati. Sachin (11yo boy), and twins Krishna and Praveen (8yo boys) live with their large extended family in a small cluster of houses, each of which has a stable large enough to hold four cows in their living room. No joke – we actually did the consult while the cows were pooping right beside us.

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It’s the definition of a ‘multi-purpose room’

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Sachin

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Praveen and Krishna pictured here with their father at our first meeting during a government clinic day held at a local school

This family is miles from the first family and are totally unrelated to them. Sachin no longer has any function other than sitting in a very poor posture and moving his hands, and the twins are barely walking and can hardly get up off the floor. Looking at their presentation, all of these three siblings also have muscular dystrophy that clinically looks like the Duchenne’s form. ***It is important to note that Duchenne’s cannot officially be diagnosed without genetic testing, but that is rare and expensive here so it’s not an option for most families***

Our plan for intervention was similar for both families:

1) Educate the extended family members on muscular dystrophy and the lack of a cure; the second family had been spending money on bringing the boys to a village ‘bone healer’ who rubbed ayurvedic oils on their ankles and wrapped them in odd bandages promising that the boys would walk in a few months with continued visits…

2) Plan for a all-terrain three-wheeled wheelchair so that the parents could safely push their children to school rather than carry them. When Mustafa and Gousiya sat in the chairs for the first time, huge smiles spread across their faces when they realized they could propel themselves around effortlessly!

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Mustafa and his new wheels

3) Request the workshop to build small tables, only 8 inches high, so that the children could stay sitting cross-legged on the ground but didn’t have to do their homework or eat on the ground. Gousiya actually has a fairly severe scoliosis due to asymmetrical leaning forward to write on the floor. One of the German volunteers, Liander, designed and constructed a beautiful table that the children loved!

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Gousiya and her new table where she can do homework and draw – she’s quite the artist!!

4) Create a resting/stretching splint for the still-ambulatory children to try to provide a more functional ankle position for the inevitable contractures that will occur

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Abdul getting casted by Liander for a stretching splint

5) Teach the family very gentle stretches for hamstrings and calves, as well as range of motion exercises to prevent joint contractures. Sachin (11yo boy) was one of the worst cases we’ve seen – he had no medical management to this point and had very painful and contracted hips, knees, and ankles because he had just been sitting cross-legged (no walking or any other activity) for the past year.

Local worker Prabhakar teaching range of motion for Sachin's very contracted joints

Local worker Prabhakar teaching range of motion for Sachin’s very contracted joints

It was unlucky genetics that led to these two rare stories of muscular dystrophy affecting all children in a family. Samuha is doing wonderful work here in South India for families like these who would otherwise have no intervention. Thanks to the funds we collected with our Dollars For Development campaign, we were able to gift the wheelchair and table (total $150) to the first family who had no real income. It felt so good for us to be able to give them the gift of mobility!!