Stigma, non-inclusion, challenges facing persons with Down syndrome – Foundation


A Non-Governmental Organisation, Down Syndrome Foundation Nigeria, has lamented that stigmatisation and non-inclusion of people with Down syndrome in the country’s healthcare support system remain one of the major challenges militating against its efforts to provide better life to its members.

The organisation revealed this when it paid a courtesy visit to the Headquarters of Punch Nigeria Limited in Magboro, Ogun State on Tuesday.

It noted that if stigma is removed and people get the right healthcare support in the country, those with Down Syndrome would attain their life potential.

The NGO, which requested more partnership, support and collaboration with The PUNCH to strengthen its campaign, noted that is saddled with the responsibility of providing resources for parents, caregivers, and educators to enhance support for persons with DS and intellectual disabilities.

The organisation noted that refreshing and rekindling the existing relationship with The PUNCH would help to advance the course of its members.

Recall that the Foundation had, in 2013, presented The PUNCH with an award in recognition of its support to the Foundation over the years.

According to the National Administrator, Down Syndrome Foundation Nigeria, Mrs Nike Denis, stigmatisation and non-inclusion of people with DS in Nigeria’s health support system are their major challenges.

Mrs. Nike Denis

Mrs. Nike Denis

Describing Down Syndrome as a genetic condition where a person is born with an extra copy of chromosome 21, she said this implies that a person with DS has a total of 47 chromosomes instead of 46, which affects how the brain and body develop.

Denis noted that people diagnosed with DS live happily and healthily with supportive care,

The national administrator, who visited in company of four key staff members and four persons living with DS, said apart from the known intellectual disabilities and finances associated with the condition, stigmatisation and non-inclusion in the country’s health support system are also major challenges.

She maintained that the twin challenges are the major problems that these people have to face, especially those with congenital disorders like holes in the heart which require corrective surgery.

Denis said, “We have done a lot by creating awareness but the stigma is still there. If we are able to remove the stigma, we will be able to put our students in general schools because the children feel better when they are together with other students in mixed schools.

“We are a residential resource support centre. So, we take care of them in our school. Stigmatisation is one area we need to work on because we live in a country where some religious and cultural beliefs see Down syndrome as a disease or people whose parents committed one evil or the other and they are treated that way. We need to end this stigma.

“You can imagine how far we can go globally if this stigma is removed. I saw a post where a person with Down syndrome was admitted as a Member of Parliament in one of the European countries. If that can happen, it tells us that with the right support, our students will be able to achieve the same. So that stigmatisation is something we need to address.”

On the health care support system, she added, “Another challenge we have in that space is health care. We have not been able to tap into it yet. People with Down Syndrome usually face one major congenital disease, hole in the heart. For lack of support, it cost us over N10m to send one person abroad for treatment.”

While speaking on the desired areas of collaboration, the Deputy Head of School and Project Manager, Down Syndrome Foundation, Sonnie Innocent, appealed to the management of The PUNCH to report their activities in its newspaper as it has always done to ensure that the awareness gets to the right places, especially to policymakers.

“We see The Punch as a senior supporter and we want to renew that relationship between us. We need event coverage. We need your occasional visit to our centre to do some impact stories for the people to be aware. There are people who don’t know anything about Down Syndrome. So, we need this awareness,” he appealed.

Also, while the Foundation’s Legal Resource Person, Blessing Fynecontry, said publishing issues-based stories on Down Syndrome in Punch Newspapers would help to shape the government and general public policies on it, Educational Therapist, Mrs Alomaja Nkechinyere also appealed to The Punch to employ at least one person with Down Syndrome in order to make a statement.

Responding, the General Manager, Digital and Publication, Mr Ademola Oni, assured them of media coverage whenever The Punch is invited or a press statement is sent across.

He, however, said that the onus of giving the right information to The Punch for publication lies on the foundation’s spokesperson.

While urging the foundation’s spokespersons to get in touch with The PUNCH whenever it has an event, he thanked the team for equipping people with Down syndrome with skills and something to look up to in the future.

“To me, empowering them with skills is the greatest thing you have done for them. This will help them focus in future,” Oni added.

Also, the Daily Editor, Punch Newspapers, Adedayo Oketola, in his closing remarks, thanked the foundation for what they are doing and asked them to continue with the good job.

Meanwhile, on hand to receive the team was the General Manager, Corporate Services, PUNCH, Mrs Olufolakemi Gbemuotor.

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