BVPRI Launches First-Ever ‘ Down Syndrome Project’ In Kaduna

NEWSDAILYNIGERIA: The Basileia Vulnerable persons Rights initiative( BVPRI), has formally launched the first ever Down Syndrome project in Kaduna.

The project hastag ‘#Inclusionmeans’ was launched on Friday, to advocate and advance the rights of People with Down syndrome( PWDS) as enshrined in the laws of the land and for the common good of all

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Speaking to Journalists shortly, after the launch, Executive Director, Basileia Vulnerable Persons Rights Initiative( BVPRI) Barrister Jennifer Agbaji, said, “We are here today to launch our new project that’s the Down syndrome project, and this is the first ever project that’s focuses on a specific kind of disability, which is Down syndrome, so we are here to formally ask for partnership, ask for people to key into this

” to protect the rights of persons with down syndrome, to push for policies that will make them better access to education, better access to healthcare, psychosocial support even for their care givers and parents”

According to her, the initiative tends to achieve this by amplifying the voices of care givers and parents of persons with down syndrome, ” you see, right now, we are having a round table discussion, they are saying what it means to live with people with Down Syndrome;and their challenges;

” so, if you do not know what these people go through, you might not be able to proffer or support them,so first of all, is to put them at the frontline, to hear their voices and mobilize support for them to be able to have better life and support

She then called on government to do the needful by providing the needs of the citizenry based on their special needs, because the people are unique, adding that, though the disability law has been passed, but the law does really shine its light on specific kind of disability .

” Everyone has different needs, so my call on the government is to make sure that they look at the percularity and uniqueness of the needs of every person with disability, so that, they can be able to provide definite and strategic solutions to their needs”, she stressed.

While lamenting the challenges faced in society, saying” there are a lot myths and misconception about Down syndrome, there are a lot of people who say when some one is with down syndrome is possessed by a demon, so there’s misconception, because of lack of information, adding that, after the launch ” new things will begin to come up, policies will begin to come up, we’ll have more inclusive schools” she added

While advocating the need for partnership with government, CSOs; called on government to implement the Disability law by meeting the specific and special needs of PWDs, ” every one should come together, and make sure that, we see them in their uniqueness and provide specific and definite policy for them” she reiterated

Similarly, the Permanent commissioner, Kaduna state peace commission, Barr. Rebecca Sako John, while commending the launch of the project in Kaduna, said “It is promoting inclusion of persons living with the Down syndrome, it promotes information, with understanding of what the Down syndrome is all about; I’m happy I’ve learnt alot about its causes and how to deal with people with Down syndrome

” you know non inclusion and marginalization of persons despite their situation is one of the drivers of conflicts in the country and also it takes them away from contributing to development, it takes away hearing their voices and their meaningful contribution to the development of the country and the state”

According to her, ” If the project will support the inclusion of persons living with Down syndrome and also get them advocate for better service delivery especially, in the health and education sector, it will go a long way in improving the quality of life of those people , it will also help in conflict prevention; because it means their voices are heard and their issues are being taken care of,” she added

On his part, the National President of National Association of Persons with physical Disability,( NAPWD) Rilwan Mohammad Abdullahi, described it as ” a very good initiative, that we have been expecting, adding” you see even among the group of persons with disability this group, (PWDS) are neglected, there’s no space for them; so for such organization to come with a good initiative, interms of including and making room for these people, I think, it’s a wonderful one

” and they need the support of government even the media in particular to make sure that this group of people have enough space, in terms of giving their own contribution, because hiding them, I don’t think, will not augur well and it will not even be better for the society; noting further how he came across a lady, with down syndrome in Lagos, ” she’s a Barrister; if that lady was not given that opportunity she wouldn’t have gotten to that position, so I think hiding these group of people will not be well with us,

He further called on stakeholders particularly, government agencies to ” make sure a space is created for this group of persons, because among the disability community they are the most vulnerable, they can’t talk for themselves, they can’t do things for themselves, virtually, all their life, they rely on their parents, so there’s need for even the larger society to put hands together and make sure that a space is created for this group of people”, he stressed

In the same vein, a Senior Psychologist with Neem Foundation, Dr Peter Ebe, while giving an insight on down syndrome, noted that, It’s a medical condition, but majorly a psychological issue, “Down syndrome is not a very common thing, even though, from the data, we have, shows that one in every one thousand babies may come down with down syndrome,

” it’s a medical condition actually and so the parents may have a lot of worries like, why is my child like this? and most times, because we are Nigerians and Africans we quickly, say maybe it’s witchcraft or it’s a punishment for what I have done or my husband has done, but like we said, Down Syndrome is a medical condition where a child is born with an extra chromosome that affects the growth of the child”

He then advocated for training for parents and caregivers of children with PWDs, to be able to provide support,” and they have to be patient, they have to learn what the child likes they have to learn how to respond to the child when the child begins to manifest these things, ” some may not be able to talk early enough, small head, some may have stunted growth, some may have difficulty with concentrating and all that, but technically, they can be supported with speech therapy, play therapy, in fact, in all the things, you’ll do for a child with down syndrome play is key” he stated

While expressing dissatisfaction on the progress achieved as a country, saying, “Down syndrome is a psychological issue majorly and psychology in Nigeria is just coming to limelight, as it is, we are way way behind, most people are not even aware of down syndrome, so they don’t even know how to go about it, some are just going about it, religiously, they are taking it to prayer houses, but like we said down syndrome is a medical condition and all the Psychological support the child needs should be given,” he added

On her part, a human rights activist, Barr. Bukola Ajawu speaking on the place of the Law on people with Down syndrome ” these people to me, are special people and it means they deserve special treatment and when you talk about the place of the law, the law is very clear on the fact that, no one should be discriminated against either by virtue of the reason of the persons birth, sex, religion or anything,

” even the law goes ahead to say they are entitled to free education and free medical care, but to what extend is this medical care?, that is why at this launch there will be a lot of interactive sessions to talk about what is the government’s take in ensuring that at least there’s an outfit where parents can take their children, to care of these children; So this launch is to talk to spirited philantropists, you need to sow into the lives of these people”, she added

She added that ” all in all the fact is that, they need special care and people should be aware that the same way, that they have human rights, these special people too have their human rights, which ought to be protected by the law” she stressed

While advocating the need for government at all levels to go into collaboration with groups advancing the rights of PWDS, said the disability law signed by the FG and Kaduna State provides for all public places, structures where these people can freely move adding that, the law which is in its second year in the state gives 10 years for those disability’ friendly’ facilities to be put in place by government.

A Mother of a child with Down syndrome, Mrs Michael Agaba Abah, recounting her experience, said ” It all started when, she was born, ( Joyce) when it was time for her to craw, she was not crawling, time for her to walk, she was not walking, time for her to start talking, she wasn’t either, so one man just encouraged us to take her to the hospital there they confirmed it’s Down syndrome”

According to her, the major challenge, her daughter faces is in her speech.On how it feel,she as a mother, she said” I feel happy, that’s a gift from God, you can’t deny and you can’t throw it away, whatever that comes from God is perfect, the Bible says,” the blessings/ gift of God maketh rich and added no sorrow’ so when God gives you a gift take it like that, with a heart of joy and God will make something perfect out of it”, She appealed to governments to support people with down syndrome via quality education.

The Down Syndrome project launch featured several speakers from across the world, with some joining virtually, Free medical services was provided and lots more.