During harvest time, Dara* and Kunthy* earn a living in nearby rice fields. However, when the harvest ends, work is more challenging to come by. The day I met her, Kunthy had finished cutting the grass at the local pagoda using a long knife. Stooped in the brilliant morning light, she painstakingly worked her way across the vast grounds; her daughter, Sokea*, laughed and chattered from the custom wheelchair the ABLE Projgram recently outfitted her for, placed in the shade of a tree nearby. Her mother talked with her as she worked.
Years earlier, a much grimmer reality existed for mother and daughter. Children In Families (CIF) was alerted about a woman with a daughter with disabilities who were starving to death in a tiny rented room in the city. Taking pity on her, the landlords would give her portions of their dinner, but it was not sufficient for them. Kunthy was highly vulnerable. Married as a teenager, with no more than a few years of schooling, she had fled abuse but had few options to care for her daughter, born with cerebral palsy. Her son was safe with extended family in her village, but she could not return out of fear for her daughter’s well-being.Sokea was failing to develop and thrive.
Her husband, Dara, from a similar background, was young, and the frustrations of poverty drove him to addiction. He loved his family but felt shame for not being able to provide well for them. This created a cycle he struggled to break.
When CIF was alerted to the dire state of Kunthy and Sokea, the whole family was brought into a process of restoration. Given the support of their village community, extended family, and CIF’s social workers and ABLE Program, Dara found dignity and could walk out with consistently better life choices. When shame was replaced with hope, he found he had much less anger and began to learn better ways of communicating and caring for his family.
Reunited, the couple began to learn about Sokea’s disabilities and how to care for her so she could grow and develop. Their nutrition also greatly improved with support from CIF. Then, their son moved back in with them. He and his sister bonded and loved each other immensely. Both parents actively participate in Sokea’s physiotherapy and care.
Their home, a simple wooden structure on stilts, recently began to fall apart. Rather than fix the problem for the family, CIF staff members helped them look at their finances and find solutions, even on seasonal income. They found that by saving little by little for the house, they could repair it. First, they set aside enough money for new posts, then a roof, and eventually, each part of the structure was replaced and significantly better. Dara and Kunthy had done it on their own. They also learned that small steps can yield great results when they remain faithful to growth.
As I watched CIF’s physiotherapist do exercises and stretches with Sokea, her grandmother passed by and stopped. Sitting nearby, the woman smiled and chatted with the little girl, who lit up in her presence. In the few hours at their home, I met many family members who lived nearby and were involved in their lives.
When Kunthy and Sokea were at their most vulnerable, it would have been easier to separate them, put them in a safe house, or put the child into a facility for care. And both would have benefited to a degree, at least for a time. It would have been easy to judge Dara for his behavior and to want to keep his wife and children far from him. Still, we would have also taken away his God-given responsibility to become a good father and provider. Kunthy and Sokea would have remained vulnerable as a single parent household, separated from extended family. The most sustainable and holistic approaches often take time and involve buy-in from the community and family. It was not the easiest or most expedient way to care for this family. Still, years later, sitting in their village, watching all of the beautiful interactions, and seeing the bonds of this family, it was the right way because family is where children belong.
* Names changed for purpose of confidentiality
Our ABLE Program team continues to support 59 children across our Foster Care, Family of Origin as First Priority (FOR-1), and Emergency Care programs. Currently, there are three more children in the assessment and enrollment process who will be entering our program soon.
This past year, ABLE’s founder, Lisa, has been busy working on an off-shoot project, Enhancing Service Provision for Children with Disabilities (ESP). Thepurpose of this project is to build capacity in local communities to support children with disabilities and their families.
“We know what families who care for children with disabilities need to succeed. Throughout Cambodia, government policy states children should be in their own families, so how do we make this possible throughout the nation?”
To prevent their relinquishment to residential care, there are several different touch points to address. There’s awareness and advocacy. There are resources and availability. One focus of her new project is to address service needs by training and coaching staff who are working with people with disabilities in community roles. This training component includes six modules covering topics from rights and inclusion of children with disabilities to caring for children with specific disabilities such as cerebral palsy and autism. Additionally, the project will work to build relationships with subnational and local authorities, helping to increase their awareness of the needs of children with disabilities and their families in their communities. The project also helps connect authorities with what resources are available locally and regionally.
A few weeks ago, the new director of the Department of Welfare for Persons with Disabilities came to the opening of the training course for the participants in Phnom Penh and Kandal province.
Lisa expanded on the main aims of the project, “We will provide training and coaching with organizations. There will be site visits and consultations with local authorities. Then, training and working with families and parents to promote development for their children. I am hoping for an overlap in how these activities inform each other. We want to promote relationships between the authorities and those we teach.”
CIF believes in multiplication, collaboration, and passing on our skills and knowledge. We know we cannot face every aspect of family-based care and caring for children with disabilities without so many others on board.
While the ABLE Program gets excited about the big picture, bringing others along to grow and journey, we also get life from small progress in each one of the children in our care.
Recently the staff celebrated a little girl in our program, Thida*. Thida lives with her family in one of Cambodia’s rural villages. With development delays, she was far behind other children her age in motor skills, language, etc. Living rurally, far from many services with a family who works hard to meet basic needs, this sweet girl and her family needed extra support and encouragement. Through the implementation of physiotherapy, occupational therapy, and the help from our local community trainer, her fine motor skills are beginning to progress.
The ABLE program exists so that children with chronic illness and disabilities can live in loving families and develop to the best of their abilities. Whether it’s the 59 children in ABLE, little Thida, or the children in the communitieswhere other organizations and government entities are being equipped, they deserve family. They deserve belonging. They deserve access to care.
Imagine spending most of your life on your back, staring up at a ceiling of rusting corrugated tin. From time to time a face appears to feed you basic nourishment or give you a bath, but the world passes by you as your head becomes flat from pressing the hard floor most hours of each day. Your siblings run and scream, coming in and out of the house. Yet, you lie there, unable to move your muscles well. Flies and ants assail you, but you do not have to strength to swat them away. You can understand much of what they say but no one speaks directly to you. Because of this, facial expressions and language are delayed.
This was little Phanna’s life for the first two years. Born with cerebral palsy (CP), his family who lived in desperate poverty had no idea how to care for him. There was no support within their community and since they knew no one else with a child who had CP, they had never seen a better way to care for him. Struggling to survive daily life, his parents would disappear all day to work. Meanwhile, Phanna lay there. Alone.
Poverty and lack of education mingled with disability, Phanna was in an unsafe situation and at risk of abandonment. In addition, even medical professionals in Cambodia rarely understand what it means to have a disability or care for a child with a disability. Even when examined by a doctor, his parents left discouraged and shamed because they lacked the knowledge needed to care for him well. It further isolated Phanna as his family kept him hidden from the community.
Thankfully, his story does not end there. Children In Families (CIF) learned of his situation. Soon after, CIF enrolled his family in our Kinship Care and ABLE Programs. After assessments by CIF’s social workers, they determined it was not safe for him to stay with his parents. Instead, a loving Auntie took him in. This was the best living situation for him, giving him the safety and care he deserved.
The ABLE staff took an active role in training and supporting his Auntie to care for his special needs. He remained in his community and sees his siblings constantly. The Physiotherapy and interaction with his extended family allowed him to significantly develop physically, emotionally, and mentally over these past years.
At six-years-old, through a partner organization he received a special wheelchair. A whole new world opened for him as - not only Auntie - siblings and cousins can now take him out of the house to play and interact in his neighborhood.
Every day, Phanna is learning his new opportunities and challenges. The community is getting to know his special abilities. We are excited thinking about the opportunities for Phanna, as well as the impact he will make with friends and neighbors. We hope as the community interacts with him more, they will take the opportunity to learn about, embrace and include him.
Four years later, imagine waking up, being able to lift your head and then sit up with assistance. Your kind Auntie greets you with a smile and speaks directly to you. You eat alongside your family. Then, someone places you in your wheelchair to explore your neighborhood with other children. You laugh and scream and throw a ball. You are safe. You are loved. And you belong.
The reality is that Phanna’s story is not unique. Many children with disabilities are loved by their families but do not receive proper care and attention due to stigma, lack of understanding, and lack of resources. Usually all it takes is a little support, continued knowledge, and paradigms begin to shift. This is where CIF and the ABLE Program shine.
We are so thankful that, while Covid-19 continues to be a challenge globally, the measures taken by the Cambodian government along with our own modified strategies and procedures for doing things allowed us to resume direct services for all clients. We have been able to take care of some needs that had to wait when the situation was more restricted.
One of those needs was the need for equipment. While the direct therapy services and family training that the ABLE staff provide are critical to enhancing the quality of life for our clients, some children need more than that. A wheelchair or walker for a child with mobility restrictions often means the difference between isolation and impediments on the one hand, and engagement and community participation on the other.
Recently, our staff met with Nala* and her family to bring a long-awaited wheelchair. It is clear from the photo of Nala* that she is thrilled to have access to greater mobility for the first time in her life.
This wheelchair was provided by Wheelchairs for Kids, an Australia-based organization who manufactures and provides adjustable pediatric wheelchairs around the world. Nala is one of the children who had to wait for the resolution of Covid-related travel restrictions to receive this life-changing piece of equipment. We are so thankful that now, at last, she is able to engage so much more easily with other children in her village and really take in the world around her.
While Nala was the one most impacted by isolation and mobility restriction, the benefits of having access to the wheelchair are far reaching. It allows her family members to move about the community more easily with her. She could hardly be left at home alone, while they visited and worked. It also influences her community. Minds are being changed about people with disabilities as neighbors and friends gain more exposure to families and children with disabilities.
Nala is a beautiful child with a smile that melts hearts. Her joy is infectious and needs to be spread, especially in these difficult times. Your generosity allows children to be impacted by the love and care of a family, but it also allows communities to be changed from within. Nala’s mobility is also part of a paradigm shift for her neighbors.
The ABLE Project staff also helped to provide the gift of mobility to two children from a partner organization here in Cambodia. Our physiotherapists were excited to fit them with wheelchairs, also from Wheelchairs for Kids.
We are so appreciative of the support from all of you who have contributed to this project through GlobalGiving. We hope that you are encouraged as you see the impact that your giving has on the lives of these children.
Community-based rehabilitation is a strategy which has been used for decades in lower-resourced countries such as Cambodia. Over that time it has evolved and broadened to include more than medical rehabilitation, though that is still a relevant need. According to the WHO, "Community-based rehabilitation (CBR) is community action to ensure that people with disabilities have the same rights and opportunities as all other community members. This includes, for example, equal access to health care, education, skills training, employment, family life, social mobility and political empowerment." (WHO, 2004). In places like Cambodia, many people do not have access to professional health and rehabilitation services, It was for this reason that the ABLE Project was started. In order for family-based care to be inclusive of children with disabilities, there have to be support services that address the unique needs of those children and their families. Since these services were not present where our families were, we knew we needed to include our own form of CBR. While the ABLE Project has two Cambodian physiotherapists on staff, we also have staff members that we call Community Rehabilitation Team (CRT) members. These staff are trained on the job by our physiotherapists and an expat technical advisor to provide basic rehabilitation support and follow up. While our physiotherapists are based in Phnom Penh, the capitol city, these CRT staff live in the rural communities in which they work.
This multi-skilled, uncentralized approach had been advantageous since the start of the ABLE Project, but the current Covid situation has made it even more necessary. While the Cambodian government and people work hard to implement strategies to contain the virus and minimize its consequences, travel from one place to another has been limited and we are all doing our best to decrease the spread of the virus. As there is still no end in sight for a return to "normal," however, the risks have to be weighed against the cost of total isolation. While it was possible and necessary during the biggest surge of the virus to limit our contacts to phone check-ins with the children and their families, we have carefully returned to doing direct visits. Research has shown that time is of the essence when working with children who have disabiliites or developmental delays and the earlier a child receives help the better. We don't really have time to "wait it out" if there are ways that we can minimize risk while still providing the support services these children need. Again, this is where our community-based staff are so vital.
As an example, in the picture you can see Savorn, one of our CRT staff working on language skills with a little girl with speech and language delays. Using good hygiene and masks and trying to maintain a safe distance, she is able to model for the family how to promote this little girl's language development. Consequently, this child has shown significant improvement and the family is really happy. This little girl and her sister also have a chronic health need for which the ABLE Project has been supporting the family to receive treatment. "Before it was difficult to understand Sophea* when she spoke. Now she is speaking more clearly and saying more words. Both of my grandchildren have become healthier thanks to the appropropriate medical treatment and the care and guidance from the CIF staff. I am happy to see them in better condition than I could have imagined," said the girls' grandmother.
We are so thankful for your continued support which allows us to continue to ensure that, even in the midst of a worldwide pandemic, children like Sophea and her sister are not being left behind. We hope that you are all keeping safe and finding your way to a healthy balance in this crazy time.
* Name changed to protect the child's identity.
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