Res, non verba

 Actions speak louder than words: Ghana elections, why I chose not to vote, policies on disability...

Ghana is currently having its presidential and parliamentary elections, several people took the opportunity to go to their various polling stations and vote. I think my whole family also went out to vote. While people were voting on 7th December, I decided to go have a look whether my name was even in the register and unfortunately it wasn't there. Now I was a little melancholic about the fact that it wasn't there but then again if it was there, who would I have voted for?  Truth be told, my mind wasn't 100%  made up about who to vote for because for the past two decades of my life I had been disappointed, and since my son was born even more disappointed with government; why because they simply do not care about the people.

Each government comes in for their own selfish gains. From the few manifestantes I had access to no political party really covered realistic, implementable and beneficial policies for people living with disabilities. Since Giovanni was born, we have been alone. Apart from donations we have received from individuals and private companies, which we are super grateful for and have helped us a whole lot, government policies concerning people living with disabilities (PLWDs) have not been adequately developed. I won't even talk about implementation because the kind of policies I'm talking about for PLWDs don't even exist in this country.

It's the sad truth, I want to take my personal experiences on this journey with my son and other mothers and children I have met on the journey to elaborate on the type of policies that do not currently exist and are making things rather difficult for us.

 People would use the argument that your vote will at least get someone in power and you could help influence policy through this or that way. My question is how? how do I get a government to put medication for epilepsy (which costs an arm and leg) on NHIS? And mind you this is not for my personal benefit as I'm currently not even on NHIS but on private insurance, but for the benefit of those who cannot afford these medications and they are many. 

People have thrown insults at me, have been very condescending and insensitive do I care LMAO not really! If you're in a situation like mine, trust me when I say the last thing on your mind would be to go out and vote:

None of the political parties had any detailed policy on people living with disabilities: absolutely none. I looked through the manifestoes of NPP, NDC and PPP  (please go and read them before commenting on this post because I have;- NDC, NPP and PPP manifestos are available on http://www.codeoghana.org/lib-manifestos.php ) none of them present an actual plan, it's all generalized. I have decided not to pin point which party said what as this would loose the focus on thet fact that the current policies in place are not working. Either way, all three manifestoes make reference to the Disability Act and the Mental Health Act and all three cover almost the same themes. Some of the following statements are in the three manifestoes: "'all persons living with the disabilities would have free education" - please where are the schools that can cater to our children in the first place? the existing ones are either just empty buildings understaffed and with no equipment- one example is the Madina Special Needs School - empty building with no staff), and the private schools for regular kids, who is traning their staff to be well equipped for children with sepcial needs?; "implement the 3% increase in Common Fund disbursements to persons with disability" -what age bracket does this include? Only those of working age? how about caregivers of children with disabilties that do not work? are they entitled to this?; "Improve access to quality healthcare by continuing to register...persons with disabilties" - ok so you register them, they get free access to healthcare and then what?  What about the medications that NHIS does not cover?; "decentralization of the National Disability Council" - all three parties agree to this, but guess what, the current National Disability Council is not even well resourced, how do you think about decentralization when you can't even handle the existing one?; "We will sanction healthcare professionals who intimidate PWD patients at their facilities while corrective surgeries would be performed for children free of charge, when required and as early as possible under the NHIS" - this is probably one of the most detailed statements I saw only one political party covered this, again I do not want to loose focus- this is not about the political parties but more on what they are all saying - one chorus) - again surgeries can be free (I have my doubts on that one and if our medical facilities can actually handle some of these surgeries, but if they can, how about after care? and medication before, during and after surgery?. 

Like I said several general statements from each political party and referring to a current law (the Disability Act and the Mental Health Act) that is not even in place. All three stress on inclusive education but I wish access to healthcare would carry the same importance. Meanwhile, the notion 'People living with disabilities' remains as general as it sounds, we need to contextualize, and deepen our understanding of this field and have separate policies for children living wirh disabilties (0-14 years). Governments tend to focus more on people living with disabilities (those of working age- they preach mainly about jobs, access to buildings,etc.) and disregard policies for children with disabilities and their caregivers who quit their jobs to look after their kids full-time with no soruce of income to do this.  

They simply don't care. Because the disabled are seen as non contributing to the society. We aren't priority, and when I say disabled I don't just mean physically. I mean every single person living with a physical, neurodevelolmental and/or mental challenge. The whole of Ghana, there are only two qualified pediatric neurologists (one in Accra and one in Kumasi), did you know that? our Health system for the vulnerable is crap.

The medications I buy every month, NHIS doesn't cover any of them, I pay from my own pocket. The pediatric ward (Nkrumah Ward) at 37 is crap, a whole public hospital. The MRI machines we have at Korle Bu and 37 don't give good imaging and so I have to fly all the way to India with Giovanni for EEG tests and MRI??? Nobody should come educate on me this until you have actually taken a CT Scan, MRI or EEG yourself, look at the image and compare to a hospital in South Africa or India and you will see the huge difference. I say this from experience, the CT scan taken in Ghana and the one taken in South Africa were completely different, even for a lay person like myself I could tell the difference in quality. The EEG scan in Ghana showed nothing and the EEG scan in India and France showed abnormalities. 

When commenting, kindly make your analysis is based on children and not on adults. Also refrain from making bi-partisan comments on this post, it's not a fight to win me over to any party, I'm just interested in developing a policy that actually works regardless of who is in power.

And you people are excited about voting, well sorry to burst your bubble but I'm not excited at all. I'll be in my corner and be the change I want to be because I know whoever comes into power they don't give a diddly squat. And that my friends is the truth! 😎welcome to my world!

Anyway we are preparing for medical review, keep us in your prayers, Merry Chrismas from us! 

Christmas day in Cotonou, Benin with Gio's leg almost in the tree. lol