Today I visited Chey Chumneas Referral Hospital in Kandal Province, near the Ta Khmau roundabout a short drive south of Phnom Penh, with my friend “Samantha” and her severely disabled son who I will call “Alex”. He is 3.5 years old now, immobile, contracted, unable to speak or even so much as turn his head, yet very alert and observant.
Her intimate involvement from the day Paula arrived into our TB Department’s care, through to her surgery in Seattle, appeared to make Samantha acutely hopeful of a similar miracle for Alex. During the same months that Paula lay on her hospital bed in our department, hopeless and dying, Samantha was recognising something wrong with her tiny first-born baby. We shared an office at that time and I often found her at lunch time, sitting at her computer researching the symptoms becoming increasingly apparent as Alex began to skip various developmental milestones. In recent months I have observed Samantha coming to terms with the permanency of his condition and her hopes transition to a more realistic search for assistance in making Alex’s life more comfortable.
Information is hard to come by in Cambodia. Multiple internet searches for various combinations of paediatric-disability-health-services offer misellaneous results, none of which serve much practical benefit to someone looking for help. After learning that Caritas are connected to the disability service we visited today, when I search “Caritas Ta Khmau”, no result tells me they are in Ta Khmau, let alone what they are doing there. A search for “Caritas Cambodia” brings up their page, showing a range of programs but nothing connecting them to a paediatric disability service anywhere in the country. [Caritas Cambodia]. The same happens even on a search for the very words written on the facility building, “Comprehensive services for children with special needs“. It seems literally impossible to know, except via word of mouth, that this service exists. Thankfully Samantha, a functional mother and a literate, trained nurse, did learn about the facility when she took Alex to another service in search of assistance.
This was Samantha and Alex’s second visit. The appointment system appeared planned and methodical. Last month a local paediatrician spent time with Samantha, listening to Alex’s history and assessing his clinical status. Today was an Occupational Therapy assessment with a young and well informed OT. After spending a significant amount of time listening to Samantha, asking questions and taking notes, she got on the floor with them and taught Samantha a number of useful strategies for positioning, lifting and holding Alex. He is regularly distressed, apparently due to pain and he does not sleep at night. The OT suggested that he may have more severe muscle pain and/or spasms at night and she recommended “nesting” him. Tonight Samantha sent me a photograph of Alex nestled between pillows, ready and hopeful for a night of sleep. Given the family’s collective exhaustion, I am hopeful that this simple but brilliant concept may give everyone some respite.
Services such as this are not conspicuous here, as they are in countries like Australia where departments and organisations have a much higher visibility and accessibility courtesy of a more inclusive and better resourced health system. Data for Cambodia is unreliable but disability rates are probably at least as high as 5% of the total population living with at least one physical or mental impairment. At the same time there are extremely limited services available to disabled people, who are often forced to resort to begging as their only means of income. Samantha’s husband earns a reasonable local salary meaning they are able to afford the transportation to Ta Khmau for monthly appointments. Many Cambodians are not so fortunate. Knowing about the service, and being able to access the service, appear to be two of the fundamental problems for parents with disabled children who are already living with poverty and stress which exacerbate these obstacles. Handicap International published a Disability Facts in Cambodia Briefing Paper in 2009 which goes some way to describing the situation.
One of Samantha’s next challenges is to find out if there is some way to access an appropriate wheelchair for Alex. Unlike Australia, where services connect with each other and relevant referrals are common inside a networked system, the staff at Chey Chumneas were unable to offer any advice in this regard. If even one person connected to a disabled child in Cambodia accesses the Paediatric Special Needs service at Chey Chumneas in Ta Khmau courtesy of this blog, then these 800 words were worth writing. An integrated list and description of the services available in Cambodia for disabled children, published online in English as well as Khmer and made available across the services, for providers and clients, would be even better.