Globally over one billion people live with disabilities (15 per cent of world population), while 17 million people live with Cerebral Palsy (CP).
Out of this number, children between zero and 18 years make up between 93 million and 150 million, even as majority of people of them are adult. Cerebral palsy (CP) is a non-progressive neuro-developmental condition initiated early in life that persists into adulthood and could lead to loss or impairment of motor function. Experts are worried over the pains that children and adults living with CP go through as a result of neglect by the families, society and government, during the different life stages.
Aging for those with CP has to do with progression of developmental changes that ultimately lessen a person’s ability to cope successfully with internal needs and with the demands of the environment. During the early stages of aging (infancy, childhood, adolescence) skills and capabilities continue to increase; in the middle stages (that is, adulthood) maintenance of function is the focus. Statistics shows that people with CP form a varied population. There are over 13.5 million Nigerians who are closely connected to people living with cerebral palsy in country, with majority not being able to afford the resources required for adequate management of the disorder, according to available statistics.
The record also shows that there are over 650,000 adults and mostly children living with cerebral palsy in the country. Even with the high prevalence rate of the disorder in the country, experts believe it was one of the most ignored medical conditions by stakeholders, as no attention has been given to it. Adults living with the condition hardly have their physiological, emotional and social needs met. Experts have confirmed that most treatment and research is done on children with cerebral palsy, while little research has been done so far on aging and cerebral palsy.
It is because of this gap that Benola, a Cerebral Palsy (CP) Initiative, a non-governmental organisation, which focuses on reaching out to people living with cerebral palsy, organised a National Cerebral Palsy Family Forum in Lagos, over the weekend to sensitise Nigerians on the disorder as well as task government and stakeholders on supporting people living with it. Tagged; ‘Benola third National Cerebral Palsy Family Forum,’ the event witnessed over 240 participants made up of children, adults with CP, families of people affected with the diseases and experts from different fields, including health. While speaking at the forum, a Psychiatrist, Dr. Charles Umeh, Lecturer, Department of Psychiatry, College of Medicine, University of Lagos(CMUL) and Honorary Consultant Clinical Psycologist, Lagos University Teaching Hospital(LUTH),
called for increased attention for adults living with the disability, stressing that the little attention being given to the neurological disorder in the country were been given to children living with the condition, rather than expanding the attention to even adults who were also affected. The forum also afforded the opportunity for persons living with the disability to tell their stories.
Their major concern happened to be stigmatisation, but, some narrated why and how they did not allow that deter them from pursuing their life dreams. For instance, Tobiloba Ajayi has been living with the disability since she was born, but has cut a niche for herself despite the unfavourable compliments she receives from the society. “I did not let the stigmatisation affect me. I am presently a Masters degree holder in International Law with two publications to my name. Today, I am doing something impactful for myself and the society,” she added. Tobi, as friends fondly call her, attributed her success to what her parents did right during her developmental stage, adding that she was trained like every other child, as against isolation of children with cerebral palsy by parents and caregivers.
The same goes for Olubusola Akinsola, who is also a Masters degree holder, who, despite all odds, strived to be a better person through social integration and striving for excellence. Akinsola, who had impaired speech and could barely speak clearly, said awareness was key to eradicating stigmatisation of the condition. “People should understand that cerebral palsy is not a disease, but only a condition,” she added. She also called on other persons living with the disability to strive for excellence and prove that they can achieve their life dreams. Also speaking at the forum, the Chief Medical Social Worker, Lagos University Teaching Hospital, Ms. Titi Tade, called on parents and caregivers to understand the various characters that comes with the different stages of development of people living with cerebral palsy.
“For an affected child of zero and three-years-old, the best thing to do for such is to teach him or her basics, otherwise, ones its missed, it would be difficult to them. At age four and six, the child wants to perform tasks on their own, no matter how long it takes. At this stage, they should be supported to explore and find answers to the little things they seek,” she said. Tade, explained that one of the most important phase of management of the disorder was between the ages of seven and 12 years, adding that most parents or caregivers tend to isolate the kids because they can no longer be taken every where due to their size. But she warned that their isolated at this stage could make them loose their ability and opportunity to develop social skills. “Between ages 13 and 18 is one of the most difficult stages for the child, either emotionally, physically or socially, because it is a difficult period for their physical, emotional and social changes,” she added.
For ages 19 to 40, Tade, explained that one of the things that pre occupies affected people at that stage was how to earn income, get independent and find intimacy. Adding that they must be supported to achieving these. Tade lamented that people with cerebral palsy were widely ignored due to ignorance, culture, religion and unwillingness to accept diagnosis. She called on parents, the society and the government to see persons with cerebral palsy as people who needs love no matter the inconvenience. “We need integrated approach on how to deal with disabilities where Health Care Providers plus family plus person living with disability work together to achieve a psychological, emotional and physical balance to ensure that children with cerebral palsy transition smoothly into adulthood rather than dropping out of the system and just become statistics,” she added.
Similarly, the Co-founder of the initiative, Mrs. Alaba Gbadebo, said CP was the most misunderstood medical condition in Nigeria as only few people know about the disorder as well as how to manage it. She said apart from the lack of awareness in the society, there were other major problems which have compounded tackling of the issue, including inadequate facilities and lack of trained man power. To her, this was making it difficult for parents to find reasonable and affordable options for managing such children, resulting in high infant mortality rate and untold hardship to parents who lack proper understanding of the condition. Gbadebo decried the lack of attention which the government, health institutions and corporate organisations has given to the neurological disorder, adding that hundreds of thousands of Nigerians were suffering from the disorder; a reason she feel was enough for priority to be given to the condition – just like the attention malaria, HIV/AIDS, polio, among others were presently receiving in the country. She said:
“There should be a law by the National Assembly and the various state assembliesto supports people with special needs, especially people living with cerebral palsy. For example, there should be laws that mandates every building in the country to be disability friendly. There should be special bus stops for them, as well as laws that would allow people at bus stops or other public places to give preference to persons with disability,” she said. She stressed that in some countries, parents and primary health care givers were being paid for taking care of people with cerebral palsy, because managing the condition has been proven to be expensive. Gbadebo believed cerebral palsy was the most expensive disability in the world to manage, adding that such people would have to continuously see various specialists, including neurologists, optometrists, epidemiologists, nutritionists, among others. This, she said was necessary because people living with cerebral palsy often have various health conditions needing medical attention; sometimes, all at ones.
Mrs. Gbadebo, who Co –founded the initiative with her husband, Air Vice Marshal Femi Gbadebo (rtd), said one of the reasons why they established the initiative was because they knew what it was taking care of people with cerebral palsy. “Our son, Olaoluwa, 19, is living with the condition, and we know how much resources we spend taking care of him, hence we decided to establish this foundation, so that we can be a voice to other millions of Nigerians who are been affected in one way or the other by the neurological disorder,” she added. Stressing further on the need for the government to support people with cerebral palsy, she said as the affected children grow up, they tend to have more problems; ranging from tooth decay due to inability to brush their teeth, ear problem, speech, eye problem, among several other issues. “For example; my son lives on 30 tablets every day and these drugs are expensive.
If parents are left alone to care for their children with cerebral palsy, it would most likely be difficult for them,” she said. While lamenting the lack of special schools for the disorder, she called on the government to take measures that would make affected persons know they also count in the country. “When I was in London, my son attended a special school. The school would send a bus to pick him up and bring him back home after closing, and they patiently teach them because patience is needed while dealing with them,” she added. She also called on parents who isolate their affected children due to stigmatisation,to cultivate the habit of bringing them out to socialise with other children, as this would also help their development.
In his presentation at the occasion, Mr. Layi Anjorin, Specialized Pediatrics and Developmental Physiotherapist and Deputy Director Pediatrics Physiotherapy said that as patients with CP grow older, they begin to face new challenges that were formerly not present. According to Anjorin, nobody is usually prepared for the changes even as he lamented lack of knowledge of health care providers in dealing with emotional and social issues of CP. “There is a lack of information from health care providers and families about care of CP in adulthood.” No doubt, there is need for integrated approach in dealing with disabilities where Health Care Providers +Family+ Person living With Disability work together to achieve a psychological, emotional and physical balance to ensure that children with CP transits smoothly to adulthood rather than dropping out of the system and just become statistics.
This story was published in Newswatch Times on August 1, 2015.