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Published On: Fri, Feb 16th, 2018

Lagos will bring about world class childhood disability intervention-Joyce Onofowokan

An area in which different levels of governments in Nigeria have remained loudly silent and painfully indifferent is childhood disability. Children with disabilities and their parents have over the years ridden on waves of disillusion, despair, and decay. They constitute a tribe of the silent minority that the society has conveniently allowed to disappear into the shadows. In an interview with Business Hallmark’s Teslim Shitta-Bey and Okey Onyenweakwu, the Special Adviser to the Lagos State Governor on Social Development, Mrs. Joyce Onofowokan, explains how Lagos State intends to adopt a more proactive approach to the management of childhood disability in the state, especially early interventionExcerpts…

Special Adviser to the Lagos State Governor on Social Development, Mrs. Joyce Onofowokan

What is Lagos State doing about the plight of children with disabilities; how is the government giving voice to the voiceless?

You can’t say they are silent. They have parents. Their parents must be ready to advocate for them. They are kept in the home; they are not seen, it is a societal problem, because it is the way the society thinks about them. You can’t blame the government for that. You can blame the society.  All western societies came from what you were talking about. It is because His Excellency, the Executive Governor of Lagos State, Mr Ambode is concerned about them that he brought me from the United States and gave me a mandate to put in place a sustainable system in place that would address the needs of children with challenges. And that is what I am working on. There is a special peoples’ Law, but even when there are laws, you have to think in terms of implementation. It is a societal thing. Are laws enforced? Are recipients complaining to the right quarters, so that laws can be enforced?

We found out through our interactions that most of the parents are not in that social class where they can meet the needs of these challenged children in terms of their medical needs, appropriate education and so on. Does Lagos State have a framework for addressing these specific needs of health, education and perhaps recreation?

Education and health are free for them. I have come in contact with a lot of parents. And again, it is a societal thing. Everybody self-medicates. I have come in contact with a lot of parents who have children with seizures. They arbitrarily stopped medication; because a pastor or imam says reject it in Jesus’ name or pray and fast about it. But what I am here to do is to let parents know that we can’t hear them if they do not speak. I have been meeting with parent advocacy groups. We have been talking about empowering them. Parents need to be empowered. We have been talking on breaking the jinx that says if my child has a challenge, what I see first is the challenge; the issue is to recognize that in every challenge is an innate ability. The ability might not be cognitive. The ability might just be that if everybody comes across this child, he smiles with his eyes and we begin to read him through his eyes. We begin to learn the body language, because every child on the face of the earth is a social being. They are made to socialize. We are teaching these parents. I have gone into their homes. I have met them. We have gone to help intervene when they have issues in the hospital, so that the appropriate services are given to them. So, it is a societal thing challenge. It is not unique to Lagos.

Is there any collaboration between Lagos State and the private sector to make positive interventions in the case of these children that we are talking about?

The society is not made of the private sector and the government alone. The society is made up of me and you. What is your own part in contributing to what is on ground? We need you as advocates. We need you to be sincere in your reporting without being emotional or judgmental. You need to project the truth to parents. Each parent needs to be well informed before they make decisions. The doctor who delivers the baby should not wait six months before telling the parents that their child has XYZ challenge. It is not the doctor’s purview to protect the emotions of the parents. The doctor’s role is to report his findings, the social worker helps parents manage the challenge and you tell them what to do. The Bible says people perish because of lack of proper information.

The private sector does a lot that people do not know about. GT Bank, for example, intervenes in autism. Now the state government is working with the private sector to see how we can put something in place that would address these things from very early stages. The mantra in my office is: A stitch in time saves nine. If a shirt has a tear and you don’t fix it on time, it would get to a point that you wouldn’t be able to fix it at all. What we want to do is put in place a system that with the first tear, we begin to repair, so that it does not become as bad as not to be able to redress the problems. But we rely on the press too to help us with advocacy, because you reach a wider audience than we can ever reach. But again, your reporting must be fair, balanced and not judgmental.

Why early intervention?

Early intervention is based on the premise of a stitch in time saves nine. I am a proponent of early intervention. I am a certified early intervention specialist. Science has shown us that by age three, 85 per cent of your brain is developed, which means that from age three to the time you die, you only have 15 per cent of mental developmental growth to expect. So, what early intervention does is to capitalize on that little window of opportunity to manipulate the brain into doing what we want it to do. That is early intervention. It is a programme that addresses any problem of disability from the day children are born or from the day we know about it. In most places, it is three or four years. We capitalize on it. It is a multi-disciplinary process. For instance, children with Down syndrome, they have a low oral modular control system. Most times, they cannot suck well or eat well. If they don’t eat, they would starve. That is another complication. So, you go in with an oral therapist, who works on the oral system. And simultaneously, a physical therapist works on larger modular areas- the ability to sit, crawl and eventually stand, walk and run. And as they work on these, the occupational therapist comes in and works with other modular skills- the ability to pick food and feed, because the parent is not supposed to feed the child forever; ability to dress. There is the developmental specialist who works on social and emotional skills- in other words the ability to relate with other people through play or other learning styles. So within those three years, we have already identified how best you learn. If you learn through music, we will teach you through music. That is your God-given ability. So, we capitalize on that. It is not everybody that goes to the university. By the time you go into primary school, we sit down with teachers and tell them that the way you can reach particular child is through music. The important thing is for the child to talk. If a child could sing to me that he or she is very hungry, I’ll feed him. If that is the individual’s strength, we capitalize on it. Who says he or she can’t become a maestro playing the piano or strumming the guitar? At that critical time, we get to know you. And as we are working on the child, the mother is being counseled simultaneously and we are celebrating little successes. The first time the child gives the mum eye contact and smiles, we celebrate it, because that is development. When the child sits himself, we celebrate it. So, you celebrate the little progresses. So, those early years are the most critical years. If a child has a disability and nothing is done by age five, you have missed that window of opportunity for a remedy. Whatever you are doing, you are managing it. That is why early intervention matters.

With your experience, what percentage of these problems have been solved through early intervention?

Early intervention does not always remove the disability. We must get that right. If you have Down syndrome, you have Down syndrome. If you have autism spectrum disorder, you have autism spectrum disorder. You have it for life. It is not cured. What early intervention does is to work you through the process of ensuring that the problem does not become as bad as it could without intervention at this stage. In my years of being in this field, I can tell you that 90 per cent of the kids I have worked with are all functional to the level of their abilities.

Does Nigeria have the professionals who can deliver the kind of services you would love to deliver?

I am aware that there are occupational therapists in the country. I am aware there are physical therapists. You call them physiotherapists. There are nutritionists and special education teachers in this country. We will find them and train them. And they would be the core team of what we want to do. Lagos State is going to be a model state in West Africa, if not Africa. We are going to look at other child disability intervention systems across the globe and better them. We are Nigerians. We are well educated. We are the brightest black race in the world. We will bring Nigerians abroad back home. I came back home. His Excellency is committed. I know him and I see the commitment in this eyes when he talks about what he wants to do. His actions are not about him, they are about a legacy. They are about him putting down a foundation that becomes unshakable that will outlive all of us. If there is one human being in Lagos that I have met who has a passion to make a difference he is that one person. I am not saying this because he brought me back. I know him. I met him about eight years ago. What he said eight years ago, when he didn’t know he was going to run for office, I see that same passion in him today.

You are coming from the United States to Nigeria what has been the peculiar challenges. What are the transitional problems you have noticed?

It is like comparing apples and oranges. I come from the number one state in the United States that is known for the provision of social services. The other states try but they couldn’t catch up to us. I also need to understand the reality that this is a different cultural system. So, whatever I am bringing, I need to know how to tailor it to the peculiar Nigerian state of affairs. There are constraints. The constraints are societal factors, because people have come to me and said, this is not the United States. But Rome was not built in a day. It does mean we have to rest on our oars. We should begin to grow up, eventually, we will get there. Though this is not the United States, we can make it. I have a mandate and every single day, I keep my mandate close to my heart.

You had a stakeholders’ meeting last year sometime in November. What did the meeting achieve?

We had a stakeholders’ meeting, a first of its kind. We brought in technocrats, doctors, and parents from all walks of life. We talked. They talked about what they wanted. One of the things they talked about that we are going to look into is early intervention. The doctors want to be empowered. They want good schools, free health and transportation. Those are things that every mother wants. Capacity building- I have been meeting with the parents. We are empowering them. We are going to teach them how to meet the doctors without being intimidated by medical professionals, how to ensure the doctor listens to them. Every mother knows something is wrong with her child even before the doctor discovers it. Let’s go back to community medicine, where doctors listen to parents.

I met a parent who I told had something was wrong with her child and advised her to go to the hospital. She did, but had some issues there. I went with her and asked some questions. Because of societal issues, the doctor minimized what I was saying. I said I am not a doctor, but I know early intervention. I know when I see a child who has disability. I know what needs to be done to effect some changes. He belittled me in the front of the mum. It was because of the level of his knowledge. And in every profession, there is arrogance. I am used to calling the doctor and telling him that I think this child has this problem. I can say it quacks like a duck. The doctor could say it is indeed a duck or a swan. Unfortunately, along the line, this baby died. The day I met the baby, I knew after two months, the baby was going to die, because it was lethargic. A child that sleeps for 20-22 hours, you don’t need rocket science to know that the child is lethargic. What we needed to do at that time was simply to wake him up and provide therapy.

Going further, how are you going to cope with these challenges?

In the case of early intervention, people have to be trained. As somebody in the medical field, you need to know the developmental milestones. Parents also need to have that information, because as a parent, you rely so much on your doctor than any other person. My doctor’s words were law to me when I was raising my children. We need to reorient ourselves through knowledge. Between age one and two, if the child does not have neck control, we need to ask why? Everybody needs to be aware of the developmental milestones of these children from age zero to three. Parents need to stop self-medication. We need to build trust, so that parents can trust doctors and nurses.

We need to build a society where we are all fully engaged in bringing about the kind of results we all want to see and cherish. We must take ourselves as partners rather than rivals or competitors. We must collaborate and cooperate.

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