6/6/2014 Epilepsy South Africa Newsletter June 2014 Table of Contents From the Desk of the National Director Towards a New NPO Act ICASA Code for People with Disabilities SADPD Changes Its Name The South African Cabinet National Mental Health Policy Frameword & Strategic Plan 2013-2020 New Draft National Disability Policy Changes Focus South African NCD Strategic Plan 2013-2017 Northern Cape Scoops Local Media Award INTERNATIONAL NEWS New IBE Members New York State Considering SUDEP Legislation FACTS CORNER US Congress Urging HHS to Remove Barriers to Marijuana Research New Epilepsy Publication WHAT'S HAPPENING? National Epilepsy Week 2014 31st International Epilepsy Congress Research Survey CONTACT US http://us7.campaign-archive2.com/?u=c0810bc6019da7e92ccfeea3a&id=7019973d8e&e=[UNIQID] 1/19 6/6/2014 Epilepsy South Africa Newsletter June 2014 From the Desk of the National Director Dear Readers May was a month filled with highlights for Epilepsy South Africa. Our Directors and National Board met from 15 to 17 May 2014 to consider operational and policy issues. These national meetings only take place twice annually – usually in April/May and September. We look forward to the South Cape/Karoo Branch hosting the September 2014 meetings in Knysna. Another highlight was the 2nd African Epilepsy Congress held in Cape Town from 21 to 24 May. We welcomed visitors from across the African continent and even further afield. The presence of the leadership of both the IBE and ILAE was particularly significant. This included Athanasios Covannis (IBE President), Emilio Perucca (ILAE President) and Ann Little (IBE CEO), as well as Anthony Zimba (IBE Vice-President for Africa), Youssouf Noormamode (IBE Africa Chairperson) and Harmiena Riphagen (IBE Africa Secretary). Our National Chairperson (Dr Phindi Mnguni) welcomed delegates to the Congress on http://us7.campaign-archive2.com/?u=c0810bc6019da7e92ccfeea3a&id=7019973d8e&e=[UNIQID] 2/19 6/6/2014 Epilepsy South Africa Newsletter June 2014 Wednesday evening. She shared the platform with Master of Ceremonies, Jo Wilmshurst (a well-known paediatric neurologist at Red Cross Children’s Hospital), Dali Magazi (National Chairperson of the Epilepsy Association of South Africa), Anthony Zimba (Congress Co-Chair), Amadou Gallo Diop (Congress Co-Chair), Athanasios Covanis (IBE President) and Emilio Perucca (ILAE President). The first two days of the Congress focused strongly on the medical aspects of epilepsy while Saturday was set aside as the Epilepsy & Society Day. Presentations focused on the psycho-social impact of epilepsy with South Africa strongly represented by Nicole Laxton (Epilepsy SA Youth Ambassador) and her mother, Danica who spoke about their experiences, as well as Anne Fredericks who focused on epilepsy and elderly persons and Johanna Keikelama who presented a research study conducted in South Africa about epilepsy and traditional healers. They were supported by Gretchen Birbeck (USA) speaking on women’s issues, Robert Cole (Australia) on men’s issues and Harmiena Riphagen (Namibia) on epilepsy and schooling. The IBE has agreed to make copies of presentations and papers available on their website in the near future. Following the recent national and provincial elections we are pleased that the newly announced Cabinet includes one Minister and two Deputy Ministers with disabilities: We include information about the newly constituted Cabinet elsewhere in this newsletter. In addition President Zuma announced the reconfiguration of the Department of Women, Children and Persons with Disabilities. At the time of writing the new administration is working out the operational details. In the interim, it is business as usual. http://us7.campaign-archive2.com/?u=c0810bc6019da7e92ccfeea3a&id=7019973d8e&e=[UNIQID] 3/19 6/6/2014 Epilepsy South Africa Newsletter June 2014 One of the major decisions taken during the National Board meeting is the relocation of the National Office to the Western Cape Branch in Lansdowne, Cape Town during June 2014. Updated information will be made available via our website and our next newsletter. Kind Regards Marina Clarke Tow ards a New NPO Act by Sophie Hobbs In this article, the author takes a quick look at the latest version of the Draft NPO Policy Framework on the Amendments of the Non-profit Organisations Act and possible implications for the sector. The fifth draft of the Draft NPO Policy Framework on the Amendments of the Non-profit Organisations Act 71 of 1997 was issued to non-profit organisations (NPOs) ahead of a consultative meeting in Johannesburg at the end of March 2014. The Non-profit Organisations Directorate has clearly taken pains to address the concerns of civil society with this version of the framework, which recognises the valuable contribution and role of NPOs in building South Africa’s economy. The Framework proposes an NPO Directorate as a specialised direct public service that is ‘a focussed and fully ring-fenced entity’ but still reports to the responsible Minister (in this case, the Minister for Social Development). Amendments to the Act will aspire ‘to promote transparency and accountability within the NPO sector without placing onerous requirements on organisations’. The business case for changes to the structure of the Directorate will be developed through a feasibility study, although it is not clear whether the study will be by internal or independent researchers. Recognition Value This fifth version of the framework is more inclusive than previous versions, recognising the important role of civil society in the development of the country. It explicitly makes the point that NPOs are not only delivering social services but contributing to economic http://us7.campaign-archive2.com/?u=c0810bc6019da7e92ccfeea3a&id=7019973d8e&e=[UNIQID] 4/19 6/6/2014 Epilepsy South Africa Newsletter June 2014 growth and stability. The framework says: “It is not the aim of government to simply write unreasonably stringent measures that will hamper the growth of the NPO sector.” One of the striking things about the framework is the acknowledgement of how little is known about the real size, employment conditions, salaries and income levels of the NPO sector in South Africa. While the Directorate is able to cite a growth in registrations of more than 11 percent per annum, it acknowledges that the majority of registered organisations are still non-compliant and that some 80 percent of registered organisations are voluntary associations. One of the proposals in the framework is for the Directorate to conduct research on the ‘income levels and contribution to the South African economy’ of NPOs and make this available to the public. This should be welcomed and encouraged – the more we understand about the South African NPO sector, the better we will be able to lobby for, and jointly create, enabling policies and practices. Reducing the Burden A key component of the framework is the recognition of the burden of multiple registrations and compliance mechanisms on NPOs and, particularly, that smaller organisations are often unable to meet the minimum requirements. GreaterGood welcomes the proposal to simplify the registration processes and the assertion that Trusts, Voluntary Associations and Non-profit Companies should be subjected to the same registration and compliance requirements. We also welcome the move towards electronic registration and faster turnaround times, working with a network of partners offering registration services in areas where Internet penetration is not as good. However, we would like to urge the Directorate to investigate the use of cellphone and USSD solutions which have been very successful at connecting isolated communities with services in similar economies like Kenya and Nigeria. Size Is Not Everything Another proposal to be welcomed is the ‘risk-based approach for monitoring compliance’ and the recognition that, because of the diversity of the sector, the current ‘one size fits all’ approach is not appropriate. However, we would caution against the assumption that the size of an organisation is the key factor in the assessment of risk. According to the framework, “The larger the size and the higher the income levels of the organisation… the more vulnerable and at risk the organisations can be.” Over the last 10 years that GreaterGood and GreaterCapital has assessed organisations and conducted project risk ratings, we have found that size and income levels are not necessarily associated with greater risk. There are many factors at play and a solid, evidence-based risk assessment tool should be developed to address this. Self-Regulation The proposals in this version of the framework cover the concept of self-regulation by the sector in some detail. This is a long way from the first few versions which created anxiety in the sector in terms of enforcement. The fifth version explicitly states: “the http://us7.campaign-archive2.com/?u=c0810bc6019da7e92ccfeea3a&id=7019973d8e&e=[UNIQID] 5/19 6/6/2014 Epilepsy South Africa Newsletter June 2014 intention is not to create a body that will continually interfere in the affairs of organisations.” While we welcome the softer approach, GreaterGood does have concerns about what evidence there is of the efficacy of self-regulation. There are a number of good governance initiatives in existence already and disagreement within the sector about which is the most appropriate. We believe there is a need for an independent, unified compliance framework based on accurate information about size, income