6/6/2014 Epilepsy 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 . 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 and expenditure practices and salary benchmarks in the NPO sector.

While self-regulation is given recognition in the framework, an NPO Tribunal and appeal mechanism is still proposed to provide a dispute resolution process outside of the costly and time consuming court process. While this could be of great benefit to the sector, our concern is the make-up of the tribunal and the perception of its impartiality. Furthermore, we are not sure that the ‘blacklisting’ of organisations (which is still proposed) is useful. While we of course acknowledge that fraud and mismanagement must be exposed, the potential for hasty, unfair and prejudicial ‘blacklistings’ – outside of a judicial process – means that the process would have to be very carefully detailed and followed.

GreaterGood and GreaterCapital welcomes the open and consultative nature of the process for developing this framework and believes that, by working collectively, the resultant changes to the NPO Act will be able to meet the needs of our growing and changing sector.

Sophie Hobbs is the head of strategic communication at GreaterGood and GreaterCapital. This article first appeared in the Greater Impact, 8 April 2014.

Source: www.ngopulse.co.za, 24 April 2014

ICASA Code for People w ith Disabilities The ICASA Code for People with Disabilities (currently under review) was circulated for public comment. The deadline for comment has come and gone, and ICASA will be holding public hearings in provinces in the coming months.

KwaZulu-Natal: 20 June Limpopo: 26 June Western Cape: 27 June 2014 Mavhungu Makatu, 011-566- Xolile Mateza, 021-431- Sandile Ndlovu, 031-334- 3429, 9804, http://us7.campaign-archive2.com/?u=c0810bc6019da7e92ccfeea3a&id=7019973d8e&e=[UNIQID] 6/19 6/6/2014 Epilepsy South Africa Newsletter June 2014 9529, [email protected] [email protected] [email protected] Eastern Cape: 30 June Mpumalanga: 3 July Mpho Moletsane, 041-394- Mavhungu Makatu, 011-566- 1609, 3429, Northern Cape: 3 July [email protected] [email protected]

Please liaise directly with the contact person in your province with regards venues, time and reasonable accommodation needs.

For any other queries or to obtain details for other provinces, please contact: Lize du Plessis, Consumer Affairs Department, Independent Communications Authority of South Africa (ICASA), Bloemfontein Regional Office, Phone: (051) 411-5904, Cell phone: 073 077 4408 and E-mail: [email protected]

SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat of the African Decade of Persons with Disability (SADPD) issued a press release that the name was changed to Africa Disability Alliance (ADA) with effect from 11 April 2014. This completes a few years of planning and consultations aimed at having a clearly defined name that is short, concise and not linked to any timeframe. The new name can now be used in all correspondence, legal and other documents.

The change was necessitated by the need to shorten the name, de-link it from a ‘decade’ timeframe. There was a need to adopt a name that communicates the fact that the organisation is an African, broad-based regional technical agency that works through alliances and networks using a broad range of tools that emanate from the UN, AU and other jurisdictions.

ADA is led and managed by people with disabilities. The General Assembly and Board of ADA are comprised of diverse-disability membership of more than twelve continental organisations and networks in Africa.

It is important to note that:

1. The registration number and original date of registration remain unchanged. http://us7.campaign-archive2.com/?u=c0810bc6019da7e92ccfeea3a&id=7019973d8e&e=[UNIQID] 7/19 6/6/2014 Epilepsy South Africa Newsletter June 2014 2. ADA will continue to be a non-profit corporation (NPC) in line with the amended Companies Act (2008). 3. ADA’s logos, addresses/branding, business start date, main and ancillary objectives will reflect the new name but remain the same.

The registration of ADA launches a new phase in the development and maturity of the organisation.

The South African Cabinet

Post Minister Deputy Minister(s) Minister in the Presidency Jeff Radebe Minister of Women in the Susan Shabangu Presidency Finance Nhlanhla Nene Mcebisi Jonas Water and Sanitation Nomvula Mokonyane Communications Stella Ndabeni-Abrahams International Relations and Noma-India Mfeketo / Maite Nkoana-Mashabane Cooperation Lluwelyn Landers Police Nkosinathi Nhleko Public Service and Collins Chabane Administration Human Settlements Zoe Kota-Hendricks Economic Development Madala Masuku Trade and Industry Rob Davies Mzwandile Masina Science and Technology Home Affairs Higher Education and Mduduzi Manana Training Energy Tina Joemat-Pettersson Thembi Majola Justice and Correctional John Jeffery / Thabang Michael Masutha Services Makwetla Agriculture, Forestry and Senzeni Zokwana http://us7.campaign-archive2.com/?u=c0810bc6019da7e92ccfeea3a&id=7019973d8e&e=[UNIQID] 8/19 6/6/2014 Epilepsy South Africa Newsletter June 2014 Fisheries Sport and Recreation Gert Oosthuizen Small Business Development Elizabeth Thabethe Mineral Resources Ngoako Ramathlodi Godfrey Oliphant Cooperative Governance and Andries Nel / Traditional Affairs Defence and Military Veterans Nosiviwe Mapisa-Nqakula Kebby Maphatsoe

Environmental Affairs Edna Molewa Barbara Thomson State Security Ellen Molekane Basic Education Enver Surty Rural Development and Land / Candith Gugile Nkwinti Reform Mashego-Dlamini Telecommunications and SIyabonga Cwele Postal Services Transport Sindi Chikunga Social Development Bathabile Dlamini Henrietta Bogopane-Zulu Public Enterprises Lynne Brown Labour Mildred Oliphant Inkosi Arts and Culture Rejoice Mabudafhasi Public Works Jeremy Cronin Tourism Derek Hanekom Thokozile Xasa Health

National Mental Health Policy Framew ord & Strategic Plan 2013-2020

The National Department of Health publish this document which they claim is "...a new mental health system, based on primary health care (PHC) principles." Read the plan here.

Source: SA NCD Alliance/PHANGO Newsletter Vol 1 (5) http://us7.campaign-archive2.com/?u=c0810bc6019da7e92ccfeea3a&id=7019973d8e&e=[UNIQID] 9/19 6/6/2014 Epilepsy South Africa Newsletter June 2014

New Draft National Disability Policy Changes Focus The first Draft White Paper relating to the revised National Disability Policy, which introduces the concept of “duty bearers” and charges them with responsibility for ensuring the implementation of the provisions of the policy, is expected to be signed off by the incoming Minister of Women, Children and People with Disabilities in June this year.

It will then be released for public comment, following cabinet approval, in August and should hopefully be ready to be launched on 3 December, National Day of People with Disabilities.

That’s according to Lidia Pretorius, DWCPWD’s Chief Director, Monitoring and Evaluation of the Rights of Persons with Disability, who said much of the focus of the new policy was directed at ensuring the mainstreaming of persons with disabilities in all walks of life, including in the workforce.

Speaking at the SAE4D breakfast last month, Ms Pretorius said that duty bearers - those who are in a position to make a difference, from captains of industry to government officials – will be deemed to have intentionally discriminated against persons with disabilities (a criminal offence), if they are unable to provide evidence that they:

Acknowledged that there are barriers which exclude persons with disabilities/detract from their access or participation; Identified potential barriers; Put in place measures to minimise/remove barriers; Budgeted for these measures; Can report on progress with implementation; Can measure impact.

“We are moving beyond begging and encouragement,” she said. “We want results. The new policy is based on four key pillars: Human Right, Universal Access Design, Mainstreaming, and Self-Representation. Its purpose is to ensure equality for people with disabilities.”

The new policy is designed to bring the National Disability Policy in line with the http://us7.campaign-archive2.com/?u=c0810bc6019da7e92ccfeea3a&id=7019973d8e&e=[UNIQID] 10/19 6/6/2014 Epilepsy South Africa Newsletter June 2014 Government’s Medium Term Strategic Framework 2014 – 2019 and to address the shortcomings identified in the 2011 Draft Policy which did not fully make provision for its integration into the government outcomes-based planning approach or the integration of mainstreaming guidelines.

“Disability,” Ms Pretorius said, “is not something a person has. Disability is imposed by society when a person with a long-term impairment is denied access to full participation in all aspects of life; and when society fails to uphold the rights and specific needs of individuals with impairments.”

In terms of the new policy, persons with disabilities will include all those who have long- term physical, psychosocial, cognitive and/or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others. SAE4D will be participating in consultations with the DWCPD and monitoring the progress of the new Draft Policy; and will keep members informed about all new developments.

Source: South African Employers 4 Disability newsletter, Issue 2, April 2014

South African NCD Strategic Plan 2013-2017

If you have not yet read the 4-year strategic plan for non-communicable diseases (NCD) you can download it by clicking here.

Source: SA NCD Alliance/PHANGO Newsletter, Vol 1 (5)

http://us7.campaign-archive2.com/?u=c0810bc6019da7e92ccfeea3a&id=7019973d8e&e=[UNIQID] 11/19 6/6/2014 Epilepsy South Africa Newsletter June 2014

Northern Cape Scoops Local Media Aw ard

Radio Nfm in Namaqualand, represented by guiding management member, Brunhild Strauss proudly walked away with top honours by being chosen as the Best Community Radio Station in South Africa during the Local Media Awards in South Africa. The National Office of Epilepsy South Africa enjoys a long association with Radio Nfm and Brunhild and congratulates the station on being selected from more than 750 entries.

INTERNATIONAL NEWS

http://us7.campaign-archive2.com/?u=c0810bc6019da7e92ccfeea3a&id=7019973d8e&e=[UNIQID] 12/19 6/6/2014 Epilepsy South Africa Newsletter June 2014

New IBE Members The IBE recently welcomed two new members.

The new member associations are:

The Association of Supporting Children with Special Needs (AOSCCS) in Moldova attained full membership. Visit the website www.asccs.md/en

The Italian Federation Epilepsies attained associate membership. Visit the website www.fiepilessie.it

This brings the number of IBE Full Members to 98 and Associate Members to 37. IBE is now represented in 100 countries worldwide.

To view the details for each IBE member, please choose from the following regions below

View contact details for members in the African region View contact details for members in the Eastern Mediterranean region View contact details for members in the European region View contact details for members in the Latin American regions View contact details for members in the North American region View contact details for members in the South East Asian region View contact details for members in the Western Pacific region

http://us7.campaign-archive2.com/?u=c0810bc6019da7e92ccfeea3a&id=7019973d8e&e=[UNIQID] 13/19 6/6/2014 Epilepsy South Africa Newsletter June 2014

New York State Considering SUDEP Legislation The New York legislature is considering legislation (SB 6232 and AB 8444) which would require the medical certificate portion of a death certificate to include whether the deceased suffered a sudden, unexpected death in epilepsy (SUDEP). Illinois and New Jersey already have passed similar SUDEP laws. Collecting SUDEP data is critical to improve our understanding of epilepsy related deaths and will allow us to discover risk factors and ways to prevent it.

Source: Epilepsy Foundation newsletter, 20 May 2014

FACTS CORNER

US Congress Urging HHS to Remove Barriers to Marijuana Research Representatives Blumenauer, Griffith, Rohrabacher, and Schakowsky, are circulating a letter with their Congressional colleagues urging the Secretary of the Department of Health and Human Services (HHS) to remove barriers for medical marijuana research. Studies on marijuana must go through extensive review processes beyond what is required for other Schedule I substances, making it harder for research into the connection between seizures and marijuana to take place.

Source: Epilepsy Foundation newsletter, 20 May 2014

http://us7.campaign-archive2.com/?u=c0810bc6019da7e92ccfeea3a&id=7019973d8e&e=[UNIQID] 14/19 6/6/2014 Epilepsy South Africa Newsletter June 2014

New Epilepsy Publication

Epilepsy has been found to affect at least 7 out of every 1,000 individuals in rural South Africa according to an Agincourt study published by Ryan Wagner and colleagues in Epilepsy Research. The research, led by Professor Charles Newton of the Department of Psychiatry, Oxford University and funded by the Welcome Trust, highlights the fact that epilepsy, one of the most common neurological disorders globally, is less common in rural South Africa than other parts of sub-Saharan Africa. This research raises a potential connection between epilepsy and snoring and provides evidence that improving obstetric services could epilepsy in this context.

The full article is available here.

http://us7.campaign-archive2.com/?u=c0810bc6019da7e92ccfeea3a&id=7019973d8e&e=[UNIQID] 15/19 6/6/2014 Epilepsy South Africa Newsletter June 2014 Source: http://www.agincourt.co.za/index.php/2014/03/new-epilepsy-publication/, 24 May 2014

WHAT'S HAPPENING?

National Epilepsy Week 2014 Celebrate National Epilepsy Week from 16 to 22 June 2014 with the theme: “Who has epilepsy?” This broad theme points out that epilepsy is not physically discernable – anyone can have it at any time. Contact the nearest Branch to you by dialling 0860 EPILEPSY.

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31st International Epilepsy Congress The 31st International Epilepsy Congress (IEC) will take place in Istanbul, Turkey between 6 and 10 September 2015.

The congress is organised jointly by the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). The scientific programme of the 31st IEC promises to be innovative and engaging, with a wide range of main and parallel sessions, as well as teaching and video sessions.

Research Survey Do you have epilepsy? Are you between the ages of 18-40?

If you answered YES to both questions, then you may be eligible to participate in a research project.

The purpose of this study is to evaluate the relationships between epilepsy, psychological development and health, and epilepsy-related self-management. The survey will take approximately 20-25 minutes and must be completed online. Although you will receive no direct benefit, your participation will help us learn more about people who live with epilepsy, which will potentially benefit care providers and people with epilepsy. Some participants may have a sense of satisfaction in knowing that they have contributed to knowledge about young adults living with epilepsy.

http://us7.campaign-archive2.com/?u=c0810bc6019da7e92ccfeea3a&id=7019973d8e&e=[UNIQID] 17/19 6/6/2014 Epilepsy South Africa Newsletter June 2014 If you are interested in participating, please visit the survey website: https://www.surveymonkey.com/s/8ZY9J5G

This study is being conducted as dissertation research by Channing Harris, a doctoral candidate in the School of Psychology at Fielding Graduate University, 2020 De la Vina Street, Santa Barbara, California 93105-3814. The study is under the supervision of Joan Read, Ph.D., faculty member and Director of Practicum Training at Fielding Graduate University.

Closing date for participation: 13 June 2014

If you’d like more information, contact Channing at: Email: [email protected] Phone: 011-1-805-364-2861

CONTACT US

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