'The health sector has been and still is in a deplorable condition'- Health expert reveal

By Esther Odili

‘Special needs’ children are kids born with Down syndrome, autism, cerebral palsy and other diseases that leave them sometimes with limited dexterity in carrying out simple tasks like eating, drinking water, talking and many more. These thereby affect their physical, mental and psychological condition, which predispose them to many health complications and as well affect their overall good health.

Lack of adequate awareness and limited funds remain a common thread for the parents of less privileged and some special needs children. These factors primarily informed the decisions of some people in the country to develop and establish homes that cater for the needs of these kids.

Mrs. Rose Ekaete Mordi, is a British Trained Business Administrator who was born on 13^th January 1948. She is the founder/National President of Down Syndrome Foundation Nigeria an NGO that caters for children/adults with Down syndrome in Nigeria and other West African countries.

Her passion to affect lives positively led her to founding the 'Down syndrome Association of Nigeria'

(DSAN) in 2001, which later evolved into a Foundation in 2010.

In a chat with Esther Odili, on kids with these ailments, their challenges, and the health sector.

Excerpts Below;

Children with special needs, how can you identify these needs in them?
All special needs (disabilities) have their unique characteristics and method of management, which can easily be handled by trained professionals; the first point of contact by families of children with disability is to see an experienced pediatrician.

Cerebral palsy, autism, and Down syndrome, how dangerous are these ailments and how do you work on the defect?
The three are all various forms of disability and their causes are different from one another.  These various disabilities are not ailments, illnesses/diseases but conditions which could be as a result of several factors.

Sponsorship, how do you source for sponsorship and donations?
We source our funds through donations from corporate organizations, groups, and individuals.

What challenges does your foundation face?
More than  50% of kids with down syndrome are predisposed to a lot of health problems, the most serious being congenital heart defect which usually requires urgent correction and the Foundation faces a lot of challenges in meeting their needs because of lack of adequate funds.

Government support; has it been helpful in the past and now?

There has not been any support from the Government.

What other steps does your foundation take in raising awareness and support for families with special needs children?
We carry out awareness creation through various events and collaboration/partnership with other organizations.

 How do you locate these children, are they brought to the foundation by their parent or abandoned by their parents?
Through a referral from various hospitals and organizations, and also from our awareness events.

What health, emotional, psychological and schooling challenges do the children face?

Because of the stigmatization faced by families of children with Down syndrome these children are usually denied of their basic needs.

Your advice to parents with special needs children?

Parents are advised not to hide their children with disability but should be well informed and feel free to approach organizations like ours for help in catering for the needs of their kids.

Presently, how many kids are in your care and what extra efforts does the foundation make to see to the well-being of these children?

Presently we have about 65 children in our Lagos centre (school) who are receiving formal/vocational training; we have also helped many children to receive corrective heart/eye surgery abroad. We have opened a centre in Ibadan, Oyo state and hope to open more in other parts of the country so that many more families can receive help for the well-being of kids with Down syndrome.

How has the journey been so far?

The journey has been quite challenging but fulfilling; we have gone a long way from when we started nearly 15 years ago as we have been able to render assistance to numerous families across the country - we still have a long way to go though.                  

How would you grade the health sector of the country in the past and now, what is that thing that needs to be changed?

The health sector has been and still is in a deplorable condition; health care should be given priority by having the right structures in place so that service could be accessible to all.

Please can you share your most challenging experience so far in
the foundation?

Lack of support to put the right structures in place to cater for the needs of the numerous families who require our services.