What if there was a drug that reduced the number of days a sickly child spent in hospital from 62 to nine? How much do you think the pharmaceutical industry would charge for it? A lot, let’s face it. And yet a programme in Brazil is achieving these kinds of results with little more than empathy and volunteers.
The Associação Saúde Criança is a social enterprise that has developed and continues to refine a methodology that aims to improve the home environment and self-sufficiency of Brazilian families with children suffering from chronic and/or infections diseases and living in poverty. I was lucky enough to speak with its Founder and President, Vera Cordeiro.
Pritpal S Tamber: Hi Vera. Thanks for making the time to speak with me. So what made you focus on ‘home environment’ and ‘self sufficiency’?
Vera Cordeiro: I worked for 20 years in a public hospital in Rio de Janeiro. I realized that the health care system was not enough. Everyday I saw the poor children and their families living in a vicious cycle: poverty, disease, admission into the hospital, discharge, re-admission, and, in the end, death. We understood that often times the real cause of the diseases was the living conditions of the families. With the mission to break this vicious cycle and to promote the wellbeing of the entire family, we founded Associação Saúde Criança (ASC) in 1991.
PST: Your website says you fight for social inclusion by promoting human development. What does this mean?
VC: We realised that to address this complex problem we didn’t just need to improve people’s home environment but also promote self-sufficiency; we wanted to help people change their lives. We have a multidisciplinary approach that focuses on five factors that we believe are crucial for the family’s success: health, housing, citizenship, income generation, and education. For each factor the families in our programme work with staff and volunteers to agree realistic goals to work towards. For example in ‘citizenship’, we help the family members get basic documents that would enable them to access education or get a job. In income generation, the family members choose and attend some vocational training. Each family agrees a Family Action Plan (FAP), something that is unique to them. For us it’s about helping them to achieve autonomy and dignity.
PST: Dignity. That’s a big word. It seems to me you’re asking quite a lot of these families and that perhaps you’re almost invasive. How do you ensure they want this much help?
VC: First of all we have a good triage system. Families are referred to us from the public hospital but we interview them to ensure that they really want to change their lives. We explain that, although they’ll receive a lot of benefits, such as food, medications, vocational training, psychological support, and legal support, they will have to achieve the goals that they establish for themselves. It is amazing to see how much they benefit from the programme, although 5% still fail.
PST: So how long are they typically in the programme and what’s the role of the volunteers?
VC: They stay in the programme for two years, on average . We’ve realised that in order for them to become self-sufficient and develop they have to achieve the following, although how they achieve it depends on their circumstances and their FAP:
- In health, the child that was sick needs to be healthy or as well as can be expected, all children within the family under the age of 10 need to be up-to-date with their vaccinations and well-nourished
- In housing, the family’s accommodation should have brick walls and, at the least, a cemented floor, the ceiling and walls should not have any leaks, holes or considerable cracks, there are a minimum of two rooms, one of which is a bathroom with a flushing toilet and shower, there is adequate sewage, whether through a gutter or pit, and there is a water filter
- In citizenship, all members of the family have their basic, up-to-date documents, and parents and care-givers should have attended social lectures on topics like sexual health, avoiding domestic violence, dealing with adolescents, eating well and meditation, and the family is receiving all government benefits that they have the right to
- In income generation, at least one adult must be working and the minimum income of any working adult is at least a quarter of minimum wage
- And in education, all school age children are in school
With regards to the volunteers, these are local people from higher-income backgrounds able to donate their time to guide the families within the structure of our programme. While their primary role is to help the families, many of them benefit greatly from spending time with people of different – and difficult – backgrounds. It has helped them reassess their values and be happier with their lives.
PST: Ah, that’s interesting. I read a paper recently that suggested that the process of volunteering actually improves the health of the volunteers. So how do you know your programme is working for the families?
VC: Georgetown University recently analysed the long term impact of our work (over 3-5 years). They found that we make significant and sustainable improvements in the lives of the families. For example, the average hospitalization rate fell from 62 to nine days. Household income per capita nearly doubled. Rates of adult employment grew. And 50% of families owned their own home after the programme compared with about 26% before entering the programme. They also saw a longer term impact in the percentage of children enrolled in school, which grew from around 10% to 92% three to five years after leaving the program.
PST: So if it’s working so well, is it being adopted by others?
VC: Yes. People from other cities in Brazil wanted to follow us so we established a franchise model. There are now 23 similar organisations near public hospitals across the country. Ten of them use our IT system, which is designed to have all of the information about the families, and we’ve established a governance structure to guide their work. We visit these other organisations as often as we can. We’ve also established a not-for-profit organisation in New York, USA, that has two aims: to spread our methodology and raise funds. There is a group in Germany now beginning the same model as we have in New York and in Lisbon, Portugal we are starting a work with an NGO helping them to apply the family action plan in their work.
PST: Gosh, that’s going to be hard to keep track of. Are you worried about losing control? Alternatively, how do you plan to learn from different localities?
VC: It is difficult to control everything. Where we have the best control is in our franchise approach across Brazil. It’s leading to some excellent results. For example, in Belo Horizonte, the third largest city in Brazil, the local government has adopted the FAPs as public policy. Rather than worry about control, however, the most important thing is that people from government, NGO’s and other organisations start understanding that poverty is a multidimensional problem. They have to work in a multidisciplinary way like we have. Some people will adopt our methodology in a profound way while others will adopt it as they can. We believe our greatest achievement is to have broken the old paradigm of health. We have shown that to really ‘cure’ disease and promote the well being of our families we have to work in many areas.
PST: I see from your website that you’re seeking donations. Is that how you’re funded and have you considered making a business case for your approach?
VC: It is very hard to make our institution self-sustaining but we are trying. We are always making partnerships for financial support and sell Saúde Criança’ products to transform our work in a social business. Although we are sell a lot we have a long way to go to become self-sustaining. It’s something we think about a lot.
PST: I think it’s interesting that, despite your seemingly clear success, your approach remains on the margins, rather than a core part of care.
VC: Yes, you are right. The health care system over many years has drifted from core ideas of empathy, dignity and human rights. This is the problem. And it will take time for people, governments, society, and foundations to realise that, and change. We hope our work will help them see things differently.
PST: I hope so too. Keep up the amazing work and best of luck with hosting the Olympics. For many of us Londoners, hosting the last one was an honour. Thank you for your time.
VC: Thank you very much.
What fascinates me most about Vera’s work is how a shift in her lens has led to a completely different approach to health. It’s all very well repairing acutely sick children but if you leave the fundamentals unaddressed have you really done anything? Vera’s lens on health – embracing ideas like empathy, social inclusion, human development, and dignity – make it possible to see cementing the floors of homes and helping people to find jobs as essential pathways to health. If only the funders of health care could broaden their lens. If they did, courageous innovators like Vera wouldn’t have to scrabble for money – and we’d waste less money on the ‘blockbuster’ technologies that, while sometimes useful, are making health care unsustainable and health the preserve of the wealthy.