A program run by OT Associate Professor Rawan AlHeresh is one of the few in the world utilizing a community–academic partnership that sustainably improves lives through rehabilitation.
Classes may be in full swing this fall at the MGH Institute, but for a handful of Doctor of Occupational Therapy Students, a summer experience in Amman, Jordan is very fresh in their minds and the mind of Dr. Rawan AlHeresh, who started “Toward an All-Inclusive Jordan,” an academic-community partnership program under the umbrella of the United Nations Relief and Works Agency for Palestine Refugees in the Near East (UNRWA’s) that just finished its sixth year.
“Toward an All-Inclusive Jordan” is the only program in Jordan – and perhaps in the UNRWAs portfolio – that operates on a partnership between academia and the community targeting people with disabilities.
“There's a lot of rehab programs that do direct one-on-one,” says AlHeresh, an associate professor of occupational therapy who founded the program in 2018. “But ours is focused on community empowerment. We focus on sustainability, so that's what distinguishes our programming.”
For the first time since COVID, OTD students were able to travel to the Community-Based Rehabilitation Center in the AlBaqaa Refugee Camp, home to Palestinian refugees displaced by the Israeli occupation. Here, the students trained community-based rehabilitation (CBR) workers – volunteers with minimal training .
This video captures some of the highlights of this summer’s session.
“The leadership in the CBR center asked us to assist them in identifying and training the CBR workers in assessment and developing treatment plans,” said AlHeresh, who came to the IHP is 2017, “and how to execute these plans in the home setting and community.”
That training is critical because non-locals won’t ever be let in to understand the true nature of disability, AlHeresh noted, thanks to the stigma that largely exists in the Middle East when it comes to developmental delays and disabilities such as autism, spina bifida, cerebral palsy, and Down Syndrome – conditions the students saw regularly.
“The parents are not going to open their doors and show me that they have a child who has a disability. The parents probably will never trust someone like me to say they have a child like that,” says AlHeresh. “So, our best chances of giving that child who is hidden at home some type of rehab service is by training a neighbor or a community member, such as CBR workers, who lives in the camp with them.”
Over the course of two-and-half-weeks, the five students helped train 23 community-based rehabilitation workers from three different refugee camps in Jordan: AlBaqaa (largest), Jerash (poorest), and Soof (newest).
From toileting skills to dressing to eating, the impact on the Jordanian children was immediate.
“The moment you see the children or the person with the disability, the main problem is glaring at us, and we know exactly what the solution is. But the parents don't know,” said AlHeresh. More than 30 Jordanian families were able to achieve a 50% increase in function from working with her and the students in at least one goal per family. “And sometimes it's just that one piece of advice that changes a family’s life 180 degrees.”
AlHeresh says most global health programs focus on immediate and one on one medical or therapeutic interventions, but because it’s not a long-term sustainable solution, these interventions do more harmful than good to those communities.
“With a lot of programs in Central America and Africa, they treat the child one-on-one where the child gets better for a little bit but then has a bad remission and then the mom isn't able to do anything with them,” AlHeresh said. “We're training the CBR workers who live there. They’re not going anywhere and can make sure there’s continuous care.”
For Students, Helping the Future
While IHP students saw and treated patients with developmental disabilities, their main goal was to train CBR workers in providing home programs so that it could be replicated after the students had left.
“Really what we were doing was modeling ways of how to set goals that were of importance for the families and work together with the community workers to create home programs so they could learn more about it,” said Kayla Livingston, a second-year student who had never been to the Middle East until this trip.
“They were able to see it in action and assist in the process as we always collaborated as a team. We also got their input on what was going well and what was still difficult for them throughout our time there in order to better adapt our approach to helping so that we when we leave, they’re able to do it without us.”
Along with the language and cultural barriers, second-year OT student Ashley Long said one of the challenges was trying to help children who had yet to receive an official diagnosis.
“We worked on a variety of activities of daily living including things from walking to grasping objects to toileting and dressing," she said. “After we evaluated the patients and the family with the CBR workers, we would create different interventions that correlated with the goals we set for the patient.”
Entrenched stigma could often be a barrier to treatment in Jordan, say the students, who saw firsthand the difference between American and Middle Eastern approaches to developmental disabilities.
“If the diagnosis was autism, for example, maybe one of the community workers wasn't so sure if we would be able to help them live a more independent life,” said Long. “For example, one of the children I saw was diagnosed with Autism, and I promoted the point of view to the community workers that we would be able to help the child live a more independent life. The community workers weren’t sure if that was possible but from our perspective, we’ve learned that we are able to use adaptive equipment, tools, and creative strategies to Autism patients be as independent as possible in their daily life. We met in the middle to come up with how to help the child best within their environment and surrounding resources.”
The Genesis of Community-Based Rehabilitation
When AlHeresh graduated with her doctorate in rehabilitation sciences, her future was mapped out – she would be a scientist and researcher, win awards, receive grants. and everything that comes with it. Then she received an email from the World Health Organization with an urgent call for help. The video she opened in that email changed her priorities.
It detailed the lack of rehabilitation access in low and middle-income countries – for every one million people, there were less than ten rehabilitation professionals, and for occupational therapists it was barely above two.
“It made me ask, ‘What is the significance of what I am doing?’” recalled AlHeresh. “I'm looking at rheumatology statistics that might not ever see the light of day. And yet, there are millions who have never even seen an occupational therapist like myself, and I was uniquely situated in a position where I could do something to fill these gaps of access to rehabilitation worldwide.”
Before she came to the United States in 2011, AlHeresh was trained in community-based rehabilitation in Jordan and tried putting that training to work, in education and awareness. Here’s why: there are no occupational therapists in any public school, and physical therapy doesn’t exist as a profession in most public entities in Jordan.
“You would go in and get a knee replacement and go home without rehab,” she said. “So, if you have a child who has a developmental disability or is in a wheelchair - they don't get into school because they don’t have any type of a facilitation for children with disabilities in any field. It’s a huge phenomenon over there; one program, one person, or one type of intervention isn’t going to solve the issue.”
After spending six years trying to change how the government perceived rehabilitation, she gave up, realizing a top-down approach could not work. So, she tried another tact: “I decided I’d work from the grassroots, and that's why as I started the program, to go to the community and benefit the service recipients directly.”
With programs like the one AlHeresh is spearheading, there are more than enough practitioners to carry them out. While PT and OT may not be professions recognized by the government, they are recognized by three public universities in Jordan, each of which graduate between 100 – 200 OT and PT students annually.
“They graduate with nowhere for them to work, so that’s an issue,” said AlHeresh. “You can see there's no planning and very minimal communication between the departments of higher education and the departments of labor, education, social services, and health. It's just a mess. In occupational therapy specifically, the unemployment rate is 85%. Only 15 out of every 100 graduates find a job.”
Future Opportunities and Possibilities
AlHeresh said all too often, academic institutions and communities work in their own silos, but she says it doesn’t have to be this way because the opportunities for collaboration are plentiful and the financial cost is low.
“I compare what we do to programming that is conducted by different NGOs in low- and middle-income countries to treat people with disabilities,” says AlHeresh. “They spend millions, if not billions, of dollars on these programs. There's a real chance of having an impact creating change if higher education organizations work with community organizations. There's a lot of talent in higher education and a lot of need in the community. We have a real chance of creating change if they work together.”
Through the years, the cost of the student trips to the Gaza and AlBaqaa camp have been funded by the Lucy Burr fund at the IHP and the Durant Fellowship at the Global Health Department at Massachusetts General Hospital, a collaborative coordination for students fortunate to participate in the program.
"We learn a lot about health disparities throughout our courses but it was extremely rewarding to do hands on work in a refugee camp and see disparities first hand,” said Long, the second-year student. “It was a great experience to learn about and understand the perspectives of the people we were working with so we could best help them.”
“It was an amazing experience to immerse myself in a new culture and it opened my eyes to new ways of serving clients in the future,” added Livingston, who will graduate in 2024. “I gained confidence in myself and learned a lot of amazing skills that I plan to use in my future practice. I'm just grateful that I was able to have this experience.”
AlHeresh is already planning for next year’s trip to Jordan – and many more after that.
“It's exceptionally rewarding,” said AlHeresh. “This is why I've made it my mission to write, disseminate, and let people know about this model where you really can make an impact with such limited resources. You don't need tons of money to create change. All it needs is building on human power, relationships, and being kind to one another. This can really change people’s lives.”
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