Social Assistance for the chronically ill…the next step? A chronology of engagements

1. Social Assistance for the chronically ill…the next step?A chronology of engagements Human rights and Access to Justice Technical Task Team (TTT) workshopDepartment of Justice and Constitutional Development Ratula Beukman 13 August 2010

2. Acknowledgement and building on previous work This presentation is largely informed by work of various departments and organisations, including; • The Department of Social Development • Department of Health • AIDS Law Project • AIDS and Society Research Unit, University of Cape Town • Centre for Applied Legal Studies, University of the Witwatersrand • Human Science Research Council • Disabled People South Africa • NAPWA • TAC • SANAC • Legal Resource Centre • SPII • Individuals living with HIV/Aids who advocate for a chronic illness grant • Reproductive Health and HIV Research Unit, Wits University??

3. Structural poverty: The need for social assistance South Africa's socio-economic conditions are largely structural with the majority excluded from economic and social opportunities • The South African population size is about 48 million • Close to 13 million people are formally and informally employed. But: • Over 7,3 million people are unemployed (including discouraged work seekers) • 35% of the unemployed are youth under 25 years old • 51% of school leavers will not get jobs Simultaneous with economic growth we experience a widening gap between rich and poor. STATS SA

4. South Africa

5. Proposal: Disability and Chronic illness grants The Black Sash advocates for social assistance for all who need it in SA; In the short term we support the introduction of: • A Disability Grant for all children and adults who are functionally disabled based on a uniform assessmenttoolwhich is applied fairly and equitably. • A Chronic Illness Grant for all children and adults which enables regular and effective treatment compliance leading to good health and productivity.

6. Chronology of discussions relating to a chronic illness provision continues 2002:National Association People living with HIV/Aids (NAPWA)– picketing and handing over memorandums to the Minister of Social Development across various provinces 2002: NAPWA nationally started petitions and collecting signatures. This advocacy is done on a continual basis. 2003-2004:NAPWA Organized a hunger strike Campaign - Black Easter and Black Christmas Campaigning – linking nutrition and medication As a result the Minister of Social Development intervened and the Chronic Illness Grant started taking root with an appointed task team in the social cluster – social security to come up with programmes

7. Chronology of discussions relating to a chronic illness provision continues 2005: The Department of Social Development and Treasury report written by Community Agency for Social Enquiry (CASE) ‘Investigation into the increase in the uptake of disability and care dependency grants since December 2001’ This report confirmed that the major increase in the uptake of both temporary and permanent disability grants and the increase in the number of people was attributed to people with chronic diseases being awarded disability grants. Which led to further research into how to appropriately provide social assistance for chronically ill people as distinct from people with disabilities.

8. Chronology of discussions relating to a chronic illness provision continues 2007: The Department of Social Development report completed, written by Human Science Research Council ‘Developing a policy response to provide social security benefits to people with chronic diseases” , Margie Schneider, Gerard Boyce, Chris Desmond, Jane Goudge – 15 February 2007. – a report for consultation – not for circulation. This report suggests various options to improve the lives of chronically ill people and one of these is a Chronic Illness Grant

9. Chronology of discussions relating to a chronic illness provision continues 2007: Social Assistance, Disability and Chronic illness workshop – Report of the workshop prepared by Beth Goldblatt , Centre for Applied Legal Studies – WITS At the workshop many different presenters suggested at a chronic illness grant as an appropriate poverty intervention 2007?: The South African National Strategic Plan for HIV/AIDS and STI, 2007-2011 says that one of the requirements to effectively implement the NSP is to address certain policy and legal issues and therefore: ‘The NSP recommends strengthening systems to provide food support to children and adults on chronic medication and the introduction of a Chronic Disease Grant, a policy choice currently considered by the Social Cluster of Government’

10. Chronology of discussions relating to a chronic illness provision continues 2008: SANAC Treatment, Care and Support Technical Task Team workshop, Paper ‘Social Welfare for those living with HIV,TB and other Chronic Illnesses’’ – researched by Paul Booth and Gavin Silber The paper clearly argues for social welfare for those living with a chronic illness The workshop resolved to propose a chronic illness grant and specialised provisions to be taken up by SANAC Plenary.

11. Chronology of discussions relating to a chronic illness provision continues 2009: National Social Security working Group conference ‘Towards a roadmap for comprehensive social security’ included a discussion paper, “Current social security developments: the proposed chronic illness grant:” Paper was researched and presented by Peter Strasheim on behalf of Black Sash and Studies of Poverty Inequality 2009: Treatment Action Campaign calls on the introduction of a Chronic Illness Grant – Article in the EQUAL Magazine featuring the SA grant system. (Important to understand the process in TAC up to this point) 2009: The Department of Social Development holds a workshop on the proposed qualification criteria of the disability grant, the consequences this would have on chronically ill people and ways of mitigating the adverse effects. It was agreed however that some form of CIG need to be implemented along the introduction of the HAT

12. Chronology of discussions relating to a chronic illness provision continues 2010: A Draft Briefing Document for the Establishment of a Chronic Diseases Grant by commissioned Black Sash and written and presented by Dr. Monde Makiwane (HSRC) and Mike Hamca (TAC) at seminar on social assistance. It strongly argues for a chronic illness provision. 2010:National Association of People Living with HIV and AIDS (NAPWA - South Africa) holds a Policy Dialogue on Social Grants and discuss the necessity of income support for people who are chronically ill.

13. Chronology of discussions relating to a chronic illness provision continues 2010: Various civil society organisations and associations make submission to the Portfolio committee for Social Development on the Social Assistance Amendment Billwhich proposed a new def for disability. No specific provision is made in the Bill for people with chronic illnesses. Organisations highlighted the detrimental effects of excluding chronically ill people and highlighting the need to introduce income support for chronically ill people. Some argued for a specific provision for chronic illness whilst other believe the current definition of disability should be better defined and shaped to include people who are chronically ill.

14. Chronology of discussions relating to a chronic illness provision continues Submissions were made by NAPWA, Treatment Action Campaign , Black Sash, ALP (Section 27),SPII, SACC, DPSA and others and was supported by the Human Science Research Council (HSRC) Patient Health Alliance of Nongovernmental Organisations (PHANGO); Alliance for Children’s Entitlement to Social Security (ACESS); Pierre de Vos, Claude Leon Foundation Chair in Constitutional Governance, Department of Public Law, University of Cape Town

15. Chronology of discussions relating to a chronic illness provision continues 2010: The provisions in the Bill which dealt with the definition of disability was not passed by the PC for Social Development as a result of the DOH not able to introduce the HAT. The submissions influenced members as well. 2010: NCOP provisions - continue to ask for Solutions are bit different 2010: Today Professor Christina Zarowsky from the School of Public Health shares her research around the impact of chronic illness on poor households and the state. This assessment acknowledge other research in the area not yet plotted on the time line.

16. Social Assistance Grants are necessary • The notion that grants creates dependence has been used by some as a disincentive to roll out a comprehensive social assistance system. Studies have proven that social assistance grants: • meet the daily needs of families and communities • increase the growth potential of an economy

17. Way forward It is a complex discussion – We need to answer fundamental questions; • Should we need to be concerned about social assistance for chronically ill? • Is there a link between poverty and chronic illness? • Should we expand the definition of disability or should we argue for a chronic illness provision? • Is this a conversation this SANAC TTT should be taking forward with the sector? • Should we have a National seminar and what would be the nature of the gathering? • What kind of research papers should we commission? etc The process of discussions and research on the chronic illness grant provision are continuous and work in progress.