SPEAK OUT

CINDI
A Best Practice Response to Children Affected by the HIV/AIDS Epidemic by Janyne Simon Meyer

SUBMISSION TO THE MINISTRY FOR WELFARE AND POPULATION DEVELOPMENT ON HIV/AIDS & HUMAN DEVELOPMENT : 12 OCTOBER 1999

The CINDI Network was formed in Pietermaritzburg in July, 1996, and consists of over 30 government and non-government agencies who collaborate around the issue of children affected or orphaned by AIDS. CINDI Partners look to each other for support, share information, mobilise resources and unite for action. The activities of the Partners fall into three broad categories :

Prevention (mobilising and empowering communities to care for vulnerable children);
Early Intervention (ensuring that rapid intervention strategies are in place to divert children from institutional care to community based models of care)
Children In Care (ensuring optimum care in institutions, foster care or cluster foster care)

CINDI Partners also coalesce around specific issues and have formed the following working groups:

Child Intervention Panel (CHIP - see Tabled Brochure), a monitoring and advocacy peer group panel that secures administrative justice for children caught up in bureaucracy.

CINDI Research Reference Group (See Tabled Research Document, "Wo! Zaphela Izingane/It Is Destroying The Children" by Prof Tessa Marcus.)

Home Based Care Consortium (See Research Document "Home Based Care Services and Training in Health Region B, KZN).
Access to Education Working Group. In order to assess the reasons why children are not in school, and their numbers;

CINDI will be hosting a workshop with UNICEF on 30 October 1999 to impart community based monitoring skills to various community members.
CINDI will guide the future of the subsequent Monitoring Project.
The Medicines Access Working Group is attempting to access non-script palliative medicines on behalf of dying children in institutions and foster care.
This submission is informed by the activities outlined above as well as comments from various individuals within the CINDI Network.

CRITICAL ISSUES

1 Poverty

HIV/AIDS will exacerbate the poor economic circumstances that already exist within most communities and much of the burden of survival will be borne by women, especially the elderly and in some cases, by children. There will be an increased need for Welfare support, if families and communities are to look after orphaned children (estimated at between 52 000 - 63 000 in Pietermaritzburg by 2000).

Proposed Interventions
The processing of Child Support Grants should be streamlined. The uptake of the CSG is poor in KZN because of excessive red tape.
There should be a major effort to secure Welfare Grants for those who are entitled to receive them.
The Child Support Grant needs to be payable until a minimum of 15 years (preferably 18 years), and needs to be re-thought. In this regard the Child and Family Welfare Society made representations to Min Fraser-Moleketi prior to the implementation of the CSG.

Is the Foster Grant at R400 per month sustainable?
In the context of AIDS there is a need to model lowering the pension age, given that :
pensioners are reliable in their attention to the needs of children who depend on them;
they are increasingly burdened with dependents even though work opportunities - especially for women - are few and generally low paid;
they have three generational responsibilities long before they reach the current age of pension;
the numbers of pensions are substantially fewer than the number of children in need - given the age structure of our population;
it is a mechanism to strengthen the family;
it is worth modelling to see if it is a feasible option that can be phased in to meet this challenge.
There needs to be support for the development of micro survivalist enterprises by way of loan banks to create seed capital necessary in order to kickstart such enterprises (this should be done in partnership with reputable ngo's.)
Government needs to identify its role as enabler and channel funding through an "independent" body like TNDT/NDA to provincial governments. Province should monitor and evaluate projects implemented by ngo's, cbo's, churches etc.
Alternatively, an AIDS Commission needs to adopt Policy Plans, identify implementors and co-ordinate activities between Governments and implementors.
Ngo's need to register with a Government Dept.
2 Staffing levels/volunteerism

CINDI Partners are aware that there are not enough service providers, social workers, auxiliaries and volunteers to respond to the numbers of terminally ill patients and children in distress.

Proposed Interventions

2 Home Based Care

i) The State will need to draw up a standard policy on HBC, and training.
ii)Situation analyses would be helpful to establish needs and gaps in all the regions in the country. This should be in collaboration with the Dept of Health, bearing in mind, that people involved in home based care should be able to offer practical support in preparing for death ie drawing up Wills, grant applications, referrals to other institutions; as well as physical, spiritual, emotional, and psychological support.
iii)Given the demands and stress involved , it is important that carers receive ongoing supervision to prevent burnout.
iv)There needs to be a clear understanding of cultural perceptions and attitudes towards the presence of strangers in the home. Audit current service delivery and clamp down on phantom social workers. Volunteerism and Community Workers/Para Social Workers/Social Worker Auxiliaries - the spirit of volunteerism has gradually diminished due to unemployment and poverty. There needs to be an acceptance that volunteers should receive basic training and a basic honorarium that covers costs and gives them a small incentive in order to sustain their activities as employees of recognised ngo's.

3 Material Relief (See Article by Chris Manson, former Director of Pmb Child Welfare)

CINDI has noted a growing need for material aid, as the needs of orphans and their care-givers are often immediate. This is aggravated by the medical costs (both bio-medical and traditional) incurred prior to death - as well as funeral expenses.

Possible Interventions

Provision of milk formula. The "Breast is Best Campaign" does not take into account the reality of orphanhood. Ngo's do not have funds to cover this expense on a large scale, and suggest that this matter be addressed jointly by the Welfare and Health Depts.

Storage and distribution of material aid such as basic foodstuffs, building materials and medical supplies - in consultation with social workers and ngo's.

4 Access to Education

Despite Section 29 of the Bill of Rights, CINDI is concerned that children suffer the withdrawal of the right to education on the death of a caregiver/primary breadwinner. In addition, institutions and foster parents are having difficulty in funding school fees, because of the financial squeeze being experienced by School Management Boards.
Possible Interventions
Information gathering, information sharing and problem solving together with the Dept of Education.
Targeted funding for school fees.
5 TLC and RSC Response
CINDI believes that the scale of the disaster facing children and their caregivers has not received adequate attention, support and planning by local authorities.
Possible Interventions
Consultations with Minister of Local and Provincial Government on the need for local authorities to prepare budgets and action plans to deal with the number of orphans in their areas of jurisdiction.
The formulation of disaster plans (ie current capacity vs required capacity) by TLC's and RSC's.
6 Rural Orphans on Farms
CINDI is concerned that the plight of orphans on privately owned and tribal trust land is being ignored.
Possible Interventions
Urgent consultations with Agricultural Unions, the Dept of Agriculture and the Dept of Land Affairs to assess the extent of the problem and to devise a course of action.
7 The Funeral Industry and Paupers' Burials
CINDI is aware of the burgeoning funeral industry which is a direct consequence of increased deaths from AIDS which also impacts on land use for cemetries. In addition, institutions and foster parents are encountering uncaring bureaucracy whenever they need to arrange for a child to be buried in a pauper's grave.
Possible Interventions
Research Project into the Funeral Industry.
8 Preparedness for Death and Dying
A need that resonates with the rising incidence of AIDS derived deaths, as well as other areas of contemporary social existence, namely the high incidence of injury and death on the roads which is particularly topical; general developmental strategies of the Government - land reform, agricultural development policy, housing and education - as well as those designed to stimulate and realise democracy - Human Rights and Gender Commissions.
Possible Intervention
Research in this field should generate a strategy for state, ngo and business partnerships.

CONCLUSION

CINDI believes that :
Simple solutions are needed.
Money should NOT be spent on expensive plans, but rather on the caregivers themselves, the provision of basic care, education, grants and food.
Government needs to account for millions of Rands spent on conferences, fast cars, travel and luxury living.
The role of the State needs to be reconceptualised in the light of international trends.
We thank you for this opportunity to take part in the National Consultative Process, and look forward to being kept informed of the outcome of these deliberations.