The True Cost Of Disability

National Disability Rights Awareness Month

Bridgit Evans, SAB Foundation Director, investigates the implications the cost of living barrier has on the lives of persons with disabilities.

This month is National Disability Rights Awareness Month, which aims to help address the challenges facing persons with disabilities by removing discriminatory barriers. It is well known that persons with disabilities are often disproportionately poor as a result of a combination of barriers, from getting an education, to finding decent work and participating in civic life. However, having worked in this sector for four years, I have been shocked at the much more subtle, and often overlooked, cost of living barrier which can significantly impact on their quality of life.

In order to live a ‘normal’ and decent life, and have access to opportunities, persons with disabilities have to foot the bill for a number of additional costs not incurred by their able-bodied counterparts. This includes higher medical expenses, personal assistive devices as well as modified transport or housing. Therefore, although many people with disabilities may appear to live above the poverty line, in reality they don’t have enough money to meet their basic needs and minimum standard of living.

National Disability Rights Awareness Month

To draw attention to this issue, in line with the ethos of Disability Rights Awareness Month, the SAB Foundation asked three previous recipients of our Social Innovation and Disability Empowerment Awards, to explain the cost of living barrier.

The cost of prosthetics

Michael Stevens is the Operations Manager at Jumping Kids, a beneficiary of the SAB Foundation Social Innovation Awards 2016, that seeks to provide affordable prosthetic solutions to young South African amputees.

“Considering that without the necessary equipment most prosthetic or wheelchair users are unable to be active, capable members of society, it doesn’t make sense that the cost barrier that allows for this is so big,” Stevens explains.

Michael cites a few examples of these costs, including that a top of the range prosthetic knee can cost between R500 000 and R900 000 with cheaper,  mechanical options, that have been around for over 20 years, retailing at over R65 000. The feet that he recommends cost between R20 000 and R45 000 and the socket, which he believes to be the most important component because of its role in comfort, can cost as much as R90 000. These are not once-off costs and, depending on the warranty, items need to be replaced every two to five years. Silicone liners, which are the barrier between the amputated limb and the socket, need to be replaced at least once a year at a cost of between R5 000 and R12 000.

Even for well-off individuals, who have the help of private medical aids, these costs are prohibitive, but for the poor they are completely exclusionary. Instead, the poor, who are reliant on public sector care, are given ‘old tech’ which equates to them experiencing a number of disadvantages.

Socket manufacturing techniques, for example, are old and time consuming, which means that people are often given ill-fitting, prosthetics, which can cause significant discomfort. The use of cheaper, heavy components make walking hard and, instead of silicone liners, people often use wool and fabric for cushioning. These cause chafing and pick up dirt and germs which can cause infection and lead to further amputations.

“This type of solution doesn’t allow individuals to be active, which limits their work options and opportunities,” says Stevens. “However, we have shown that even challenging fitments like double above knee amputations can be managed in a way that allows the amputee to compete and thrive. This can be seen definitively in the outcomes of Ntando Mahlangu who, following a prosthetic fitment by Jumping Kids, went from never walking to winning a Paralympic silver medal in the 200m,” he concludes.

The cost of wheelchairs

Low income earners often rely on donated wheelchairs to get around, which are generally provided on a one-size-fits-all basis. As a result, the most commonly used and prescribed wheelchair in South Africa is the basic folding frame wheelchair – a low active wheelchair most suited for an indoor environment.

“Ideally, wheelchairs should be custom built to fit the user as well as being suitable for their circumstances,” explains Schalk van der Merwe, the inventor of a Rural Hand bike for wheelchair users in South Africa.

Low cost solutions often are not suited for people living in rural areas who have to navigate long distances over rough and uneven terrain. This compromises the durability of the chair resulting in maintenance costs for the user. Failure to meet these costs can have serious health consequences and the long term effects of incorrect seating can include contractures, scoliosis, kyphosis and pressure sores.

Avoiding these health risks can come with a barrage of additional ‘hidden’ costs. A wheelchair seat cushion, for example, that minimises the risk of pressure sores can cost as much as R7 000. Customised wheelchairs can cost as much as R50 000 to R60 000 and need to be replaced as often as every three years. Therefore, securing a suitable wheelchair and keeping up with the maintenance requirements can put significant financial strain on wheelchair users, and seriously impact their ability to compete.

To address this issue van der Merwe, a recipient of the SAB Foundation Social Innovation and Disability Empowerment Awards 2017, developed the Rural Hand Bike. The basic design, made with easily maintainable and robust parts, makes this product uniquely affordable for individuals living with a disability.

The cost of accessible transport

In 2017, over 50 commuters with different types of disabilities participated in Dimensional Access Technique’s Disabled Commuters Survey. The findings of this survey indicated that disabled travellers incurred an average cost of around R70 during their daily commutes. This equates to a yearly cost of R25 550, significantly more than the average transport cost of R3 957 that, according to the Stats SA Poverty Trends report 2017, poor households cough up each year.

For the most part, accessible public transport is only available in larger cities and links to transport services are in wealthier areas close to job opportunities. Once again, people living in rural or outlying areas are often unable to access these services and alternative solutions, that cater to their specific needs, can come at a prohibitive cost.

“Accessible transport services provided by government, private businesses and even disability organisations are very limited and very costly for vast majority of persons  with disabilities,” explains Lubabalo Mbeki, the founder of Dimensional Access Techniques, a 2016 SAB Foundation Social Innovation and Disability Empowerment Award recipient.

To address these challenges, Access Techniques has developed Khwela Mobility Unlimited, an affordable transport solution that seeks to serve the mobility and commuting needs of neglected communities.

Mbeki further explains that without the ability to afford accessible transport millions of people with disabilities are unable to leave their homes or go to welfare services, children are unable to go to school, and adults are unable to work.

In conclusion

These are just a few examples to highlight the cost of living barrier, but the same can be said for most disabilities including the hearing impaired and the blind. Hearing aids are often very expensive and in order for blind people to be able to connect to the internet and engage in the modern world, they need to purchase a braille computer which costs more than R70 000.  The high costs associated with disability exclude many people from achieving the very minimum standard of living required for them to compete with able bodied individuals for work and success.

However, in South Africa we have a number of inspiring social innovators who are striving to uplift these vulnerable communities. As we commemorate National Disability Rights Awareness Month, it is essential that we take heed of this debilitating issue and continue to strive for more affordable solutions for people with disabilities. It will need a conscious effort from all sectors, public, private and civil society.