Sierra Leone: Focus on Albinism- Episode 3: Disability Act: 10 years later, not a single disability certificate issued

The Persons with Disability Act was passed in May 2011. Ten years later, persons with disabilities (PWDs) cannot receive a Permanent Disability Certificate to make them eligible for all the rights and privileges provided under the Act. The New Direction Manifesto criticized the former government for failing to implement the provisions of the Act. Yet, three years into their mandate, the Bio administration has yet to issue a single disability certificate.  

Interview with Mawusie P.I Dumbuya, Head of Communications, National Commission for Persons with Disability (NCPD).

Question: What categories are covered under the Persons with Disability Act, 2011?

Mawusie P.I Dumbuya: The definition of disability is any individual with physical, mental, and sensory challenge. Any of those impairments, or any other impairment with long term or permanent effect on an individual, [qualifies] that individual as disabled. And when we look at the sensory part, it has to do with a lot of things: the eyesight, the skin, and the hearing. So, the definition itself is very clear according to the Persons with Disability Act.

Disability itself is divided into various categories. We have the mental, physical and the sensory. For example, people living with albinism could be factored under the sensory aspect, because they do have issues with their skin, and their eyesight. People with polio could be placed under the physically challenged; people with mental illness could be placed under those with mental challenge.

Question: What are the benefit people living with albinism could have?

Mawusie P.I Dumbuya: The benefits are there, for every person with disability, according to the Act. It does not state special category. Hence, you are a person living with disability, be it albinism or whatever form of disability, you are entitled to all of the provisions in the Act. For example, section 14 of the Act states that every person with disability should have free access to education at tertiary level. So, if you are living with albinism, you will be entitled to it. Section 17 talks about free medical [care] for persons with disability. If you are living with albinism of course you are entitled to that. Also, sections 19-21 talk about employment. Persons with disability should be employed. They should not be discriminated. Persons with albinism are sure of benefitting from all these provisions because they are included in the class of persons with disability.

Question: Are you aware of the health conditions of persons living with albinism?

Mawusie P.I Dumbuya: Yes, I am aware.

Question: Which are they?

Mawusie P.I Dumbuya: One critical health condition is there skin. When the sun is very, very hot, they tend to have some skin reactions. But they do have some cream that helps them with the sunburn. Again, they also have visual challenge, their eye sight. Most times, they find it very difficult to see. Also, some of them are also suffering from hearing challenges. So, all those things are factored as persons living with disability. As a Commission, we are aware and we are trying to ensure they get the necessary treatment to prevent these challenges.

Question: Does the Act truly guarantee access to free medical, free tertiary education? 

Mawusie P.I. Dumbuya: When you look at the Commission, our Board is a very big one and the Ministry of Health and Sanitation is part of our Board. So, what we do as a Commission, we do a multisectoral approach. Disability is mainstream. Those challenges have been forwarded to the Ministry of Health and Sanitation and they are working. We are all aware that there are challenges when it comes to the free medical for persons with disability. So, the Ministry of Health and the government are working to see how this sun skin lotion cream will be made available for them. For now, the cream is not there. But there are times even we the Commission do help them with money to procure them. Of course, we are doing a lot to ensure that the cream is actually made available to all public facilities and the government and the Ministry of Health are working assiduously to ensure that actually happens.

Question: You said they Commission usually support them with money?

Mawusie P.I. Dumbuya: Yes, on a case-by-case basis.

Question: How much has the Commission spent towards the cream for persons with albinism and how often?

Mawusie P.I Dumbuya: At the Commission, we do not tend to actually decouple persons with disability. We treat them as a unit and these issues are being handled [on a] case-by-case basis. Any individual or any group who sends in a proposal at the Commission, we will definitely look at it, and look at it with value for money, and assist. We just don’t go out and begin to look for them and tell them this is money go and buy cream. We attend to those who come to the Commission and we attend to them by case-by-case basis.

Question: Are you aware of the Sierra Leone Association for Persons with Albinism?

Mawusie P.I. Dumbuya: Of course, we do.

Question: How are you collaborating?

Mawusie P.I. Dumbuya: The Commission has begun the registration process according to the Act, which gives us the mandate to register every organization that is working with, or for, persons with disability, and every INGO and NGO working for persons with disability. Of course, [SLAPWA] is about to register with us and the process is ongoing. We have a database of every person with disability, and there are times we do call meetings for our partners, and of course they are part of our partners. We are definitely working with them.

Question: You said the Act makes provision for employment. How has the Commission followed up on this aspect?  

Mawusie P.I. Dumbuya: As Commission, what we do, is to test the waters. If a person with disability comes to us and says, ‘I went for a job and I was discriminated based on my disability,’ we will definitely take a lawyer. But, before then, we have done public education through jingles across the country on the provisions of the Act.

Question: How can a person living with albinism get the sunburn protecting cream for free?

It’s very difficult to get. But the Commission and the Ministry of Health are working assiduously to make sure that the cream is procured by the government and it’s available in all public facilities for persons with albinism. And it will be free, because the Act did say that every person with disability should have free medical.

Question: What should a person living with albinism do to get this cream?  

Mawusie P.I. Dumbuya: They just need to go to government and tell them that they are persons with albinism. Of course, the doctor will screen and look at them and the doctor will do the prescription because some of the persons with albinism do not need the cream. So, the doctor will advise.

Question: Does the government of Sierra Leone issue disability certificate?

Mawusie P.I. Dumbuya: The disability certificate, according to section 7, it is the mandate of the Commission and the Medical Board. As I speak to you now, we have developed a screening tool to screen persons with disability to ensure that they get the certificate. So, this process is ongoing, and we are also working on the operational manual for the screening tool. And once that is done, every person with disability including the persons living with albinism will be certified.

Question: How many disability certificates have issued in 2020?

Mawusie P.I Dumbuya: We have not issued any certificate. We are still in the process because we want to get it right. We want a situation wherein, if the Commission and the Ministry certified a person, it will be captured not only by us, but by Statistics Sierra Leone and by the National Registration Authority, because they need a card to show that this is their certificate. By this card, they are entitled to all the benefits stated in the Act. This process is almost completed. No sooner we are done, of course, the certificate will be issued out.

Question: Am I correct to say that once there is no certificate, it will be difficult for persons living with albinism to access free medical care?

Mawusie P. I. Dumbuya: You are not correct, because what we do in this case is ad-hoc system. They come here to the Commission, and the Commission writes letters to these public [healthcare] centres. It happens across the regions, not only for persons with albinism, but for persons living with disabilities. That has been tried and tested. To a large extent, there are challenges, but I will say 98% of the public hospitals do honor the letters from the Commission.

Question: What is the process to getting the letter from the Commission?

Mawusie P.I. Dumbuya: They just have to visit the Commission’s office in any of the regions, and tell them that they are having health condition, so they want to go see the doctor. Of course, we will write and remind these medical practitioners of the provisions in the Act. So, we will give them the letter, and send copy by our dispatch to these hospitals, and they do honour these letters.

Question: Persons living with albinism need regular medication to care for their skin and eyesight. Right?

Mawusie P.I. Dumbuya: Yes.

Question: What timeframe does the letter cover?

Mawusie P.I. Dumbuya: The letters are only meant for first timers, those visiting the hospital for the first time. But after that, they themselves would have built [the] relationship. So, there is no complete frame or timeline on those letters.

Question: What is the Commission doing to ensure government compliance?

Mawusie P.I. Dumbuya: The Commission itself is government. What I said earlier is multisectoral approach. We have representative from the Ministry of Health, Ministry of Sports, and Ministry of Transport. What we do, we collaborate with them to ensure that these provisions are adhered to. When I joined the Commission four years ago, it was very difficult for us. But for now, even those universities will tell the students that they are disabled and so, they don’t have to pay. The awareness is there. But what will make them more legal is the registration process when they get their disability ID.

Question: What is the major challenge faced by people living with albinism in Sierra Leone?

Mawusie P.I. Dumbuya: Well, one of the major challenges is that the Commission itself is under-staffed. We don’t have every vehicle to do monitoring. And for persons with albinism, to be specific, of course, their drug is not there on a free basis. So, we are working to get their cream for free. Again, they suffer a lot of discrimination. People think that they are not disabled.

Question: What is the Commission doing to come to their aid?

Mawusie P.I. Dumbuya: We are doing our best to come to the aid of every person with disability.

By Stephen V. Lansana

05/03/2021. ISSUE NO: 8015