According to the National Special Needs Education Survey 2016, the prevalence of disability amongst children (0-21 years old) is 13.5%. This translates to approximately 3.5M children, representing just over 8% of the Kenyan population.
This is a significant proportion whose wellbeing and future contribution to the development of our country should not be ignored during policy formulation.
Over the last decade, the government has implemented several initiatives to help protect the rights of children and to increase access to education by Children with Disabilities (CWDs). These measures include legislations such as The Basic Education Act of 2014, establishment of a directorate of special education in the ministry of education, introduction of special schools and increased deployment of special needs teachers.
Others include the priceless efforts of The National Council of Persons with Disabilities in the provision of sunscreen lotion for children with albinism, education assistance, and assistive devices for CWDs. Additionally, in January this year, as part of the implementation of free secondary education, the government significantly increased the allocations for CWDs.
However, despite these laudable efforts by the government, unlike their adult counterparts, CWDs in Kenya continue to face exclusion and discrimination. A lot remains to be done to completely eradicate this discrimination against CWDs and to help them achieve their full potential. In particular, the implementation of the Persons with Disabilities Act and the constitutional provisions on equality and freedom from discrimination have left out a critical aspect that would significantly improve the welfare of CWDs – support for parents of such children.
Whereas the Persons with Disabilities (Income Tax Deductions and Exemptions) Order, 2010 provides various tax benefits to people living with disabilities and their businesses, the same are not extended to parents of CWDs. By failing to extend these benefits enjoyed by Adults with Disabilities to the primary caregivers of CWDs, the government, and its agencies, have indirectly participated in unequal treatment of persons with disabilities.
In addition to the physical and emotional challenges faced in raising a disabled child, families who care for CWDs incur an inarguably high financial burden. The cost of providing proper care and treatment for such children stretches many families beyond their means. These costs may be as high as three times more the cost of raising a child without a disability. In addition, studies have shown that parents of children with disabilities were more likely to experience depression and distress than parents of children without disabilities.
Moreover, other studies have shown a strong link between poverty and disabilities. Families with CWDs are likely to have a single source of income since in extreme cases parents have had to exit employment, reduce the number of hours worked or adjust work schedules in order to take care of their CWDs. As one Kenyan parent stated in a report by leonardchesire.org report, having a child with a disability “is when poverty knocks on your door”. It doesn’t have to be so.
Managing conditions such as Autism, Dyslexia, Cerebral Palsy, Epilepsy, Hearing and Visual impairments calls for specialized care, drugs, therapy equipment and fittings, and a myriad of other lifestyle expenses, all of which are expensive to procure. For example, the cost of bilateral cochlear implants for a child with profound hearing impairments is in the range of Sh 7Million in local hospitals. This excludes the cost of regular therapy sessions and replacements for accessories.
While their adult colleagues are exempted from paying duty for importation of vehicles modified for their use or assistive devices like wheelchairs, walking sticks etc, CWDs have no means of accessing such exemptions. It’s the high time we made the necessary amendments in law to enable these children to access appropriate benefits through their parents.
The government support for provision of skin care products to people living with albinism has gone a long way in alleviating their quality of life. Similar support for children suffering from other forms of disabilities should be considered.
As the country enters the penultimate stage of the budget preparation cycle for the 2018-19 budget, I invite the nominated MPs who represent persons with disability and the youth to bring to the fore the fate of parents of CWDs. I call upon Isaac Mwaura, David Sangok, DenitaGhati, Getrude Musuruve, Gideon Keter, Prengei Victor, and Mercy Chebenito lobby their colleagues in parliament to come to the aid of these discriminated children.
Yes, life can be challenging for many CWDs and their families, but a little help will make their lives more bearable.
James M. Gathenya