How do you know if your organisation is inclusive of persons affected by NTDs?

The NTD Inclusion Scorecard (NISC) is a new tool that has been developed by a group of NTD NGOs, including TLM International, DAHW, NLR International, CBM Global, CBM International, and the Chagas coalition in co-creation with persons affected by NTDs. 

Since the end of January, the NISC tool has been piloted with 10 organisations, including The Leprosy Mission International. There will be two more pilots before mid-September and then the tool will be finalised and launched for the NNN Conference in Tanzania. After this point, the tool will be available for NTD organisations to use free of charge. 

We sat down with Bernice Ejiogu from the NISC team to talk about how the NISC tool works and how exactly NTD organisations could expect to see themselves change if they were to use it.

The idea was to create a tool that would keep these organisations accountable to the NNN Commitment on the Participation of Persons Affected by NTDs and the ILEP Statement on the Participation of Persons affected by Leprosy.

The tool will allow NTD (Neglected Tropical Disease) organisations to track and measure meaningful participation of persons affected by NTDs, particularly in relation to policies and decision-making processes. 

Using the NISC tool will allow organisations to identify the gaps they have and challenges they face in relation to the meaningful inclusion of persons affected by NTDs. Once these gaps and challenges have been identified, action plans can be developed so that the gaps can be addressed.

Tim from the TLM team: How does the NISC tool work?

Bernice:  The tool works in practice by inviting members of your team to sit down together and go through a series of questions that gauge your level of participation of persons affected by NTDs across seven important domains. Through a discussion with the team members, it is identified to what extent the organisation is already taking action towards meaningful participation. 

The seven domains that the tool covers are governance, programme management, Human Resources, financial resources, accessibility, external relations, and communications. We encourage at least one person who has oversight of each domain to be present in the room for the discussions, although one person may have oversight of several domains.

We also encourage there to be at least one person affected by an NTD present in the room for the discussions. For a start, this is an exercise in inclusion, so they should be included in the discussion. Beyond that, we have found that their insight brings a different perspective and can hold NGO leaders to account in a way that would not happen if they were holding themselves accountable. 

In practice, this means that there have been around 5-10 people involved in most of the discussions we have hosted in the pilot and they tend to take 3-4 hours. Of course, you could include more people, but this would mean the discussions would take longer as each person should have their voice heard. 

Each domain has a handful of questions. You read the question as a group, discuss your organisation’s progress towards this question, and then decide on opportunities for progress.

You can score your organisation out of four, based on the criteria we have supplied, but it is not about the grading so much as it is about how we can find room to improve participation of persons affected. If you organisation scores less than four (the maximum score) then you know that you have room for improvement in that area of participation.

Tim: How has the NISC tool been developed?

Bernice: The NISC tool has been adapted from the Disability Inclusion Scorecard (DISC). It has undergone several rounds of tweaks, adaptations, and modifications so that it focuses more specifically on NTDs and not on disability. 

Throughout the pilot, we have been asking participants to tell us what they think of the questions and of the criteria. We have been incorporating their feedback along the way and constantly perfecting the tool so that it best reflects the needs of persons affected by NTDs and NTD organisations.

This is another reason it has been important to have persons affected by NTDs included in the pilot sessions. They have been involved in the development of the tool throughout the pilot. 

Tim: In what contexts does the NISC tool work?

Bernice: NISC works in any NTD organisation at any level that has decision-making processes. So that could mean at the international level, with international Boards and International Offices, or it could mean at the country office level or even at a more local level. What matters is whether you have capacity to make decisions about how money is spent, how people are hired, or how communications is run. 

We are also starting to see that there is a need to sell the importance of this tool to government NTD departments, as so much of our work happens in tandem with them and if they are not inclusive of persons affected by NTDs, there is only so far we can go on inclusion. 

Tim: What kind of change can organisations expect to see if they use the tool?

Bernice: Of course, that will depend from organisation to organisation, but I think there’s a few things that I will expect to see change in a number of different organisations. 

I expect to see more persons affected by NTDs being hired by NTD NGOs over the coming years. In fact, that’s already happened in one of the organisations that has run the pilot! 

I also expect to see more NGOs that start to deliberately budget for persons affected by NTDs to travel to different forums and conferences where they can network, gain experience, and advocate for the rights and needs of persons affected by NTDs. 

Some organisations currently don’t think about that at all, others would not initiate it but would consider it if they were asked, but we need to see more organisations proactively planning and budgeting for this. I hope the NISC tool will encourage that kind of thinking. 

I think we will see more programmes that have been co-designed with persons affected by NTDs from their inception. A lot of the current NTD programmes have had no consultation with persons affected in their design and some have been designed and then taken to persons affected for consultation afterwards.

After organisations have been through the NISC process, I think we’ll see more programmes that start with that consultation and I think that’s going to make for better, more effective programming in the sector. 

Lastly, I think we’re going to see a bit of a change in the way persons affected by NTDs are presented in communications materials. There will be no more presentation of persons affected by NTDs as charity cases; there will be dignity and respect throughout.

Tim: What are the keys to doing the NISC tool well?

Bernice: I’d suggest that the best place to start is getting buy-in from the CEO. I think the tool has worked best in the pilot when the CEO has been involved throughout and has wanted to make this happen. 

This is because you also have to come into this process as an organisation that is ready to put your words into action. You need to be ready for active participation of persons affected by NTDs. The tool is challenging because it is about challenging the status quo and some people don’t want that to happen because we do not know what will replace the status quo.

In asking for more inclusion, we are asking for power to move a little bit away from NGOs and a little bit towards persons affected by NTDs.

That creates uncertainty and the best way to overcome that uncertainty is by getting people to think about it and talk about it. That is a step in the right direction and any resistance you see will start to fade. Having the CEO on board helps you to drive the discussion and the process.  

I recommend that you start with some of the low hanging fruit and don’t let yourself get scared off by something that looks too difficult. For example, if the tool has identified that your building is not accessible and fixing this is going to require a sizeable financial investment, you might be reluctant to start work on your action plan because you feel this is too big and you have other priorities. 

Instead, work on a few easier tasks, like changing your job adverts to make them inclusive. That way you can tick off a few things from your action plan while you work on something bigger that requires a little more investment.

Tim: How can organisations get involved?

Bernice: We are going to be launching the tool at the NNN Conference in September. After that, it will be available to download from the infoNTD website free of charge. 

We recommend that every NTD organisation uses the NISC tool once a year so that you can monitor your progress and confirm whether your organisation is really inclusive of persons affected by NTDs.

We have found that even organisations that think they are doing this well have a lot to learn and a lot of room to grow. 

In time I hope many organisations will be getting full marks on the scorecard and will even be asking what is beyond the scorecard, how they could score above four. 

In any case, any organisation that can grow year on year can hold their shoulders high and know that theirs is an organisation that not only serves persons affected by NTDs, but serves alongside them, including them at every level of the organisation. I think that would make a profound difference across the sector in the years to come.