Fifteen years without a wheelchair – who pays?
by Elin Hem Stenersen, Volunteer Physiotherapist, Canzibe Hospital
Zukile is a 16-year-old boy with severe cerebral palsy who I met in June 2016,
through the volunteer work I was doing at a rural district hospital in the Eastern Cape. He hadn`t seen a therapist since he was a year old and was found to have a developmental delay. He had since been lost to follow-up in the system, as rehabilitation services have been almost non-existent at this hospital for many years. Zukile had spent most of his days lying on a bed in his home, his body gradually growing stiff, asymmetric and skewed, with very limited options for interaction with his surroundings.
He is an intellectually present boy trapped in a body that until recently was unable to move very much; but in September 2017, for the first time, Zukile was able to sit up in a wheelchair. Of course, he is not able to sit in the ‘perfect’ way, because of the years of lying in bed, and not having the proper positioning to stop his body from moving into fixed, asymmetrical positions. His mom now puts him into the wheelchair daily. He especially enjoys sitting outside, watching his brother work in the garden. A basic need such as sitting being met can have a profound impact on the life of a child who has been confined to a bed for so many years.
Zukile’s years of suffering could have been prevented, had he been seen sooner by an occupational therapist. Also, I was told that most of the wheelchairs required for children could not be ordered in this financial year, as there was no more money. This means that several children will not receive a wheelchair this year. Will the wheelchair that has been applied for actually fit the child when it finally arrives?
I understand that wheelchairs are costly – especially the specialised ones; but I have witnessed the crucial impact an appropriate wheelchair has on a person`s function and participation in family and community life. An appropriate wheelchair allows one to be in a supported position for eating and social interaction, and to have a chance to get outside and observe one’s surroundings. It can also prevent complications, such as contractures, pressure ulcers and aspiration pneumonia – complications that would be costly for the health system and the family, and most importantly, for the person’s general health and well-being.
As the sole therapist, on a volunteer basis, for a catchment area of 143 000 people, I am aware that my efforts are a small drop in the ocean. I know my limits, and know that I cannot see and meet all the needs there are; but I can make an impact for one person. I try to see what I can do, rather than what I cannot do. I think that focusing on hope instead of despair and frustration has helped me in many difficult times; because however hard I try, I will sometimes encounter my shortcomings – professionally, administratively, and with regard to time and capacity.
That said, the appreciation and thankfulness I get from the people in the community is heart-warming. Hardly a day goes by without me feeling privileged that I get to be part of something so meaningful and rewarding.
Working in a rural hospital has taught me to value the ‘basics’ – for example, the importance and impact of basic equipment such as a wheelchair or standing frame, and what it can do in the life of a child or adult with a physical disability. My efforts have been concentrated mostly on the elementary – positioning, with a focus on elements such as pressure care, prevention of contractures, and safe feeding for those unable to feed themselves due to sickness or disability. Applying, fitting, issuing and training users and caregivers in the use of basic equipment and assistive devices such as wheelchairs, standing frames and sidelyers has also been essential. I find appropriate positioning to be critical in creating opportunities for function and participation.
I am thankful for good support from NGOs such as Timion and Malamulele Onward, who have given valuable input and equipment to support children with cerebral palsy. Surrounding hospitals such as Zithulele, Madwaleni and Isilimela have also played an important part, giving me personal and professional support.
An issue I would like to raise is my experience with the slow governmental process when it comes to assistive devices, especially wheelchairs. “The right service at the right place at the right time” is often not the practical reality. When I see a patient in need of a wheelchair, that need is now – but the process, from application until the patient receives a wheelchair, can take between one and three years. In the last quarter of 2015 and throughout 2016, I made about 60 wheelchair applications. Between January and November 2014 there had been no wheelchair applications made, as there were no employed therapists to make them. I am not sure how and when people in need of wheelchairs would receive this service, without having therapists in the area.
In September 2017 I received the first special wheelchairs for adults – two of these had been applied for in December 2015. Before then, the only available adult wheelchairs had been the basic folding-frame wheelchairs, which are highly inappropriate in an area in which the environment features gravel roads, paths and fields, with households on steep hills and in deep valleys, at times kilometres away from a basic gravel road. In Detyana community, I visited two young men with paraplegia who are unable to get out into the community without assistance. Getting to town, the hospital or the clinic is a costly affair, as the few local taxis will not pick them up; they must book special transport, at a cost of about R200 one way.
I have attended basic and intermediate wheelchair courses at the Western Cape Rehabilitation Centre, where there is talk of ‘the appropriate wheelchair’, and the human rights of people with disabilities, and that a wheelchair needs to be the right fit with the appropriate function. For me, this has created a dilemma: should I think of cost, and continue to apply for inappropriate, basic folding-frame wheelchairs for the many? Or apply for wheelchairs that have been designed for rural areas? Yes, they cost more – but they allow increased mobility for the user, and they last longer. A basic folding-frame wheelchair can last an active wheelchair-user between six months and a year. A rural, rugged-terrain wheelchair, if looked after well, can last a user between two and three years. Power wheelchairs are even less accessible, as they are quite expensive; but if this is the appropriate wheelchair for someone in a rural area, why should they not have access to it?
I was confronted with this dilemma when I forwarded my special-wheelchair applications to the regional administrator. Do you settle for the basic model, so that more people can get a wheelchair in a shorter time? Or do you apply for the appropriate choice, knowing that fewer people will receive wheelchairs?
I cannot compromise! I will apply for the most appropriate model; because the purpose of a wheelchair is to provide support, facilitate function, and give hope to people like Zukile – who is now no longer confined to a bed, but sits proudly in the sun, part of his family’s daily life.