THE COST OF CARE A roundtable discussion to review the challenges by liuhongmei


									                                   THE COST OF CARE:
             A roundtable discussion to review the challenges faced by carers

        Report of a side event held during the High Level Meeting on HIV & AIDS
                               United Nations, New York
                                     2nd June 2006

       Hosted by UNDESA, DFID, Global Action on Aging and HelpAge International


Global evidence is that 90% of AIDS care is provided at home, often by older women. Up to
two-thirds of people living with AIDS are cared for by their parents in their 60s and 70s. Up
to 60% of orphaned children live in grandparent-headed households in Sub Saharan Africa.
Progress in tackling HIV/AIDS will depend on how carers of people living with HIV and AIDS
and vulnerable children are supported.

The UN Department of Economic and Social Affairs, The Department for International
Development of the UK (DFID), Global Action on Aging and HelpAge International hosted a
roundtable discussion to review the challenges faced by carers, in particular older carers, in
their role as primary caregivers to adults living with HIV and AIDS and orphaned or
dependent children. The roundtable was held at the UN High Level Meeting on HIV and
AIDS in June 2006 with the aim of raising the rights of older caregivers and seeking
individuals and organizations with this shared interest.

Key strategies were explored and recommendations made to ensure that economic and
social support is delivered to carers in line with global commitments.

The event was chaired by Mr Bob Huber, Chief, Technical Cooperation Unit, Division for
Social Policy and Development, Department of Economic and Social Affairs (DESA), United

Presentations1 were given by

   Ms.Kanitha Tantaphan, Chief of International Affairs, Bureau of AIDS, TB and STIs,
    Government of Thailand: HIV/AIDS Policy and Response: Thailand
   Arjan de Wagt, UNICEF: Protecting & Supporting Children by Protecting & Supporting
    Elderly People Affected by HIV and AIDS
   Robin Gorna, Department for International Development, UK: Advancing the Agenda:
    DFID’s Contribution to Social Protection
   Godfred    Paul,    HelpAge      International: A     brief   assessment      of the
    socio-economic impact of HIV/AIDS on older people in selected Asian countries

 Copies of these PowerPoint presentations are available at ; summaries are included here.

Key messages from the presentations and discussion

Older people’s rights

1. Older people are individuals with their own rights and needs. It is a reflection of the
   marginalised position of older people in society that their concerns are frequently
   solely addressed through their relationship with other people, meaning children are
   used as an entry point for discussing the impact of HIV on older people. But we should
   be able to talk about older people, as people infected and affected, with rights of their
   own. Special mechanisms are needed to address older people’s particular needs. And
   evidence from programmes that seek the input of older people that involving older
   people in the design and implementation of responses results in greatly strengthened
   community programmes.

Care issues are off the international agenda

2. A number of participants commented that the Cost of Care side event was the only
   scheduled discussion in the High Level meeting that addressed care issues. The
   international agenda seemed to be dominated by treatment and to some extent
   prevention issues.

Social protection & security

3. A range of cash transfers exists, including demand site vouchers which can be
   redeemed for services. Conditional transfers provide an incentive e.g. for immunisation
   or school attendance. Social protection and welfare helps to position AIDS as more than
   only a health issue. Social transfers are just one intervention in what needs to be a
   multi-strategy response. There was little debate on substantive social security issues at
   the UN High Level Meeting, so it was not possible to get a sense of which countries are
   supporting cash transfers for caregivers.

4. Most older people and caregivers are part of the informal sector and dependence on
   social welfare is a non-starter in countries where a system is not developed. Yet
   people cannot wait for systems to be developed: they need support now. Additionally
   cash transfer interventions will be unsustainable as a safety net if there is a disruption
   in funding.

5. Transfers are a way of addressing gender inequality but they need to assist carers in the
   informal sector to provide care. The Zimbabwe AIDS Network provides mini-grants
   which have been useful in supplying blankets etc.

6. Rural-urban migration in Africa is resulting in young people leaving home and not
   supporting older people. Cash transfers would address this change in former support
   systems. Demographic changes also mean people are dying younger. Supporting village
   organisations with cash transfers would mitigate against the impact of this.

7. Child support grants should be made available to older carers, regardless of whether
   they are directly related to the child in their care or not.

Home based care

8. Neither home-based care or the need to support grassroots caregivers have been
   mentioned in the High Level meeting. The Home-Based Care Alliance is being launched
   in Kenya this year and in Uganda next year. It is a grassroots peer network that will
   provide a platform for livelihood work and policy influencing.

Role of faith-based organisations (FBOs)

9. FBOs often feel they have a duty to provide care and as a result are often the most
   effective care on the ground is being provided by them. They are also a good way of

    linking grassroots with the international system as their structure means that they have
    those links themselves. It is important to engage FBOs, develop projects to train
    caregivers and look at income generating activities that are sustainable e.g. animal

Getting resources to community level

10. A key concern for one donor agency is the huge failure on the part of donors of getting
    resources to community level (e.g. fewer than 10% of households with vulnerable
    children receive any support). There is a need to work out what collaborative global
    action is needed to take this issue forward and get funds to the community level.
    UNICEF’s Global Partners Forum is an international network trying to address this. Too
    much time has been spent on debating technical issues and not looking at systems
    through which to gets funds to the community level. Significant investment in systems
    is needed.

Access to ARVs

11. A question was raised about the criteria used by the Government of Thailand in its
    distribution of free ARVs: how is distribution decided, are ARVs free for all, and where
    the money comes from to pay for this? The speaker from the Government of Thailand
    explained that ARVs are free for all who is eligible need and 80% get free testing. The
    criterion are a CD4 count of 200 or less with existence of some symptoms. Currently,
    all people living HIV/AIDS and AIDS patients whose citizen are Thai are able to access to
    ARVs through Social Security Fund, Health Security Scheme, and Health Welfare for
    government officers. The funds are allocated from the Government’s budget. Most of
    the budget is spent on care, some on prevention.

Intergenerational issues

12. A number of speakers and participants stressed the need to address generation gap
    between older people and children. The inevitable gap between the generations can
    make communication difficult as the children and their grandparents struggle to
    understand each others’ perspectives and priorities. Many younger children see their
    grandparents as providers of love and care and welcome this role. But as the children
    grow up, and the older carers take on the parental role, some older people have
    reported that their relationship with their grandchildren become strained as young
    people reject attempts by the carers to discipline or be instructive.


HIV/AIDS Policy and Response: Thailand; Ms.Kanitha Tantaphan

From the projection document, it is approximately reported that 1 million adults and
children were HIV positive in Thailand in 2005, and over half a million AIDS-related deaths.
The Prime Minister chairs the National AIDS Prevention and Alleviation Committee for which
Department of Disease Control in the Ministry of Public Health acts as the Secretariat.
Access to ART has expanded from 3,000 individuals on treatment at 109 hospitals in 2001 to
93,839 individuals receiving ART in 2006, and treatment is available in all hospitals.

The Thai Government provides technical and financial support to civil society organizations
working in HIV/AIDS, with approximately US$1-2 million allocated to support the NGOs and
PLWHA groups. These cover both treatment and care, and prevention on HIV/AIDS.

The National Strategic Plan for HIV Prevention and Alleviation, 2007-2011 sets out several
strategies. Most relevant to the Care agenda, Strategy 2 prioritises the Integration of HIV
prevention, treatment, care and support initiatives into comprehensive continuum for HIV
and AIDS. Universal Access to HIV Prevention and Alleviation is being developed as part of
the 4 year plan with the following focus areas:
 HIV prevention: focusing 5 particular vulnerable groups
 ART treatment and services: for all People living with HIV and AIDS when they are in
 Care and support: for people both infected and affected by HIV

In addition National Care and Support Programs are also being developed to target
vulnerable children, orphans and older people affected by HIV and AIDS. The Thai
Government is aiming for a minimum of 80 % of HIV-infected and affected individuals and
families to access social services. And recognizes that work at community level requires
priority attention if these goals are to be achieved.

 HIV-infected and affected older people and children should be recognized at all levels
 Prevention, treatment, care and support services need to recognize and respond to
   older people, as individuals and as caregivers
 Intensify social-economic services, information, and participation from community
   which are all crucial activities in the response to HIV

Protecting & Supporting Children by Protecting & Supporting Elderly People Affected by
HIV and AIDS; Arjan de Wagt

The number of orphans is decreasing in all regions except sub-Saharan Africa, where AIDS
has hit the hardest. In sub-Saharan Africa 5.5 million children experienced the death of a
parent in 2005 alone and extended families traditionally care for orphans.

The Global Partners Forum on Children and HIV met in London (Feb 2006) and made
recommendations to address blockages to universal access to prevention, treatment, care
and support:
    Strengthen civil birth registration to promote child protection and services
    Develop social welfare systems with budgetary allocations
    Accelerate existing momentum towards education for all children through the Fast
     Track Initiative and other financial mechanisms
    Integrate and provide routine HIV prevention and treatment services for children
    Integrate multi-sectoral responses for children affected by HIV and AIDS into
     development instruments including PRSPs
    Strengthen civil society capacity, effectiveness and participation
    Strengthen M & E for better accountability and performance of national plans through
     improving data collection for children

To be successful in meeting the global agenda for children and HIV & AIDS, it is essential to
integrate protection, care and support for older care givers in program planning,
implementation and evaluation. Special responses are required:

Urgent next steps
 Include elderly care-givers in RAAAPs, NPAs and other relevant national policies and
 Improve access to direct cash support through pensions and child support grants;
 Exert pressure for the removal of age limits in credit and loan schemes;
 Take measures to prolong the lives of HIV-positive grandparents;
 Develop programmes to deliver key information, including HIV/AIDS prevention
   information, to elderly care-givers;
 Support faith-based organisations and others to include training and provide counselling
   for elderly care-givers in home-based care programmes;
 Within the HIV/AIDS context improve data and understanding of the relative
   vulnerability of the elderly and the elderly care-givers and their dependents;
 Ensure a gender perspective throughout

Advancing the Agenda: DFID’s Contribution to Social Protection; Robin Gorna

We face a serious challenge: the Millennium Development Goals are off track with 800
million people going hungry each day; 11 million children under five die each year; 100
million children are not in school; there are over 80 million orphans in Asia; and 43 million
orphans in Africa with 6 million children cared for by grandparents. We also know the
impact of AIDS on Poverty. Every minute a child under 15 dies of an AIDS-related illness;
another child acquires HIV; four young people between the ages of 15 and 24 contract HIV.
In Africa: 12.4 million children already orphaned by AIDS and this is expected to rise to over
18 million by 2010

Responses to child poverty in poor countries are often ad hoc and fragmented. In most
OECD and middle income countries, social welfare – particularly social transfers – are used
to tackle child poverty. Some poor countries are introducing social transfers, e.g. Lesotho,
Nepal, but in general poor countries and donors have avoided social transfers. Social
protection is investment in poor people by the State. It is an essential element of long-
term and sustainable growth and poverty reduction. SP can reduced poverty and hunger
through social pensions and insurance, it can improve health by increasing immunization
levels and improving nutrition. Education benefits through increased enrolment in schools
and better attendance and performance. SP addresses the gender dimension of the HIV
pandemic and poverty through women and girls disproportionately benefiting from transfers
and increased gender parity in education. SP also contributes to the protection of rights,
e.g. inheritance rights.

The obvious concern is whether social protection and social transfers is affordable in poor
countries. The simple answer is yes. In Africa, chronic poverty is often tackled with
humanitarian assistance, which is very expensive. Social transfers are potentially cheaper
and more effective. An ILO study in seven African countries found that social transfers of
0.5 dollar a day to 10% of families would cost 0.1% - 0.7% GDP. In most cases this could be
funded by less than 5% current donor assistance. Child benefit of 0.25 dollar a day to all
orphans up to age 14 would cost less than 1% GDP. Similar level funding for existing
national cash transfer programmes in middle income countries (e.g. Brazil, Mexico)

The UK government is contributing through a number of processes. The Commission for
Africa (CFA) recognised the need for social transfers for children affected by HIV and AIDS
and recommended that donors should commit to long-term predictable funding of national
social protection strategies with $US2 billion per year, rising to $US5-6 billion by 2015. The
CFA recommendations were fed into the Gleneagles G8 summit in 2005 where the G8
committed to “develop and implement a package for HIV prevention, treatment & care”,
and to “ensure all children made orphaned or vulnerable by AIDS are given proper support”.
Both commitments require investment in social welfare systems. Signs of broader
international support for social welfare are from ILO, UNDP, World Bank, Germany, Finland,
Dutch, Swedes, Danes and in EU Development Policy.

The Global Partners Forum on Children Affected by HIV and AIDS (GPF) was co-hosted by
DFID and UNICEF in Feb 2006 and attended by 150 high level representatives from 45
countries and 96 international organisations. Participants made recommendations on 6
areas: legal protection, education, health services, national planning and monitoring,
community mobilisation, and social welfare. Recommendations were fed into UN General
Assembly High Level Meeting on AIDS through the Global Steering Committee.

The international community must urgently support governments to build coherent
institutions to deliver social welfare for the most vulnerable by:
 Strengthening social welfare structures and human resources (IATT on Children Affected
     by HIV and AIDS to support strengthening of national social policy capacity and co-
 Supporting those countries developing social welfare systems (by providing technical
     support and long term and predictable investment to appropriate ministries)

The UK government is contributing through the following programmes and initiatives:
 MALAWI, LESOTHO: discussing a transition from humanitarian aid to social safety nets of
   regular transfers
 ETHIOPIA: providing £70 million over 3 years for the National Productive Safety Net
   Programme to provide 5 million people with regular social transfers in food and cash
 ZAMBIA, KENYA: supporting cash transfer pilots. Will potentially expand Zambia pilot to
   one million households with the Government
 VIETNAM: DFID in discussions over supporting social security system
 CHINA: supporting World Bank analysis to extend social transfers to rural areas
 INDIA: DFID considering providing social transfers in Madhya Pradesh as part of nutrition
   programme for girls
 BANGLADESH: fund successful social transfer programme with the NGO BRAC

The Challenge
There are challenges to overcome, including weak institutions and identifying the right
beneficiaries, but none are insurmountable, even over the short term. We must learn from
countries that are delivering real and lasting outcomes. The fundamental challenge is
political - are governments, with international support, willing to take the risk of putting in
place social welfare systems? We know it’s affordable. So the question is “Can we afford
not to do this?”

A brief assessment of the socio-economic impact of HIV/AIDS on older people in selected
Asian countries; Goddy Paul

In Thailand two-thirds of all adults with AIDS-related illnesses are nursed at home by
parents. In Vietnam mothers account for half of all caregivers; followed by wives, fathers,
and sisters. In Vietnam the total health care expenditure for households with a person
living with AIDS was found to be 13 times higher than the average household expenditure on

In addition to the medical costs of care, HIV and AIDS create funeral costs, schooling costs,
plus emotional, physical and social costs for older people. The changing role of the older
carers within the household can be seen in this four phase table. As the adult in the family
becomes sick, the caring and financial responsibilities increase for the older people in the
household. In an ideal situation, the family will survive the first three phases until the
children are old enough to take on some of the household responsibilities. Unfortunately,
the fourth phase is often not reached for a number of reasons. Sometimes the
grandparents die, or school-leaving children cannot find employment or have to leave the
home to look for work.

Phase         Normal           Phase 1                 Phase 2       Phase 3        Phase 4
HIV/AIDS      Family           Weakening & Loss of     Decreasing    Elderly as     Grandchildren
Crisis                         family Income           health &      head of        come of age
                                                       death         family
                               Year 1-5 of HIV         Year 6-10     Year 10-16     Year 16+
Generation                     infection in adult
of Family
Children/     In school        In school most of the   School         School on/off Finish school & find
Young         Cared For by     time                    absentee       Cared for by work
Generation    parents          Caring breaking down    Caring neglect Grand         Care for
              Warmth &         Lack of Warmth          Trauma of      Parents       grandparents
              Care                                     death of       Loss of       Pressure to support
                                                       parents        parents
Parents/      Economic         Work on/off             Stop Work      Deceased      Deceased
Middle        earners          Health weakening        Sick
Generation    Carers &         Concern for children    Stress &
              providers for                            Suffering
              elderly &                                Death
Grand         Retired from     Supplement Family       Sole economic Earners        Retire
Parents/      work             income                  providers       Carers       Cared for by GC
older         Cared for by     Care for children &     Carers for sick Worry &      Some security
Generation    adult children   sick                    & children      Weary
              Secure           Insecure                Stress of

One of the main barriers to resources and support reaching children and their older
caregivers is the limitations on existing data which do not reveal the changing roles of the
household. Disaggregation of key indicators is needed - age, sex, SES (wealth vs. income).
There is a lack of key indicators around care and support, income and expenditure, and
receipt of resources. There is also a lack of more frequent data collection in high
prevalence areas and longitudinal data.

Future surveys: an ideal survey would reveal the following information:
• Household panel with parental survivorship for all children
• HIV prevalence data on all ages, including 50+
• Caregiving and income-earning activities
• Care and support indicators for OVC and PLWA
• External sources of support (all types)
• Income and expenditure data

•   Indicators of access and satisfaction with public services
•   Community-level indicators, such as social capital
•   Additional indicators of health and well-being for all

What can be done now? Some existing data could be better analysed. Prevalence data can
be used to identify/quantify vulnerable households (child and older person households with
OVC and PLWA), identify vulnerable communities, and identify vulnerable children, and
caregivers for PLWA. Data must be disaggregated to tell us the household composition in
homes of OVC and PLWA (dependency ratios, SES, # of working adults, older person
households by age and sex), and to help us examine rates of child growth failure, schooling,
etc. for OVC, by household (age, SES, household composition).

Name                             Organisation                           Email Address

Arielle Messuti                  Caritas                      
Bernice Heloo                    SWAA International           
Doris Hertrampf                  Ministry of Foreign Affairs, Germany
Dr Mary Norton                   International Council of Nurses
Elizabeth N' Ngugi               SWA Kenya & Kenya VOWRC      
Jane Kabui-Gichu                 Federation of Employers      
Jaya Belinda Canterbury-Courts   The River Fund               
Joe Muriuki                      KENUNECO                     
Kebedech Ambaye Nigussie         UNFPA                        
Ken Casey                        World Vision                 
Lindine Chaza Jangira            Zimbabwe AIDS Network        
Marcela Villarreal               FAO (Rome)                   
Mary Anne Reilly                 Centre for Women's Global Leadership
Mary Otieno                      UNFPA                        
Nicola Brennan                   Irish Aid                    
O C Lin                          Hong Kong AIDS Foundation    
Peter Masika                     Tanzania Youth Alliance      
Reynaldo Jimenez                 Vivat International          
Samantha Willan                  VSO                          
Shannon Hayes                    Huairou Commission           
Sheila Kibuka                    Harambee Africa International
Sr Josephine Murphy              Presentation Sisters         
Stuart Kean                      World Vision UK              
Virginia Hazzard                 AARP                         

HelpAge International Staff

Jo Maher                                     HIV & AIDS Coordinator (England)                 
Bridget Sleap                                Policy Officer (England)                         
Godfred Paul                                 Asia Regional Advocacy & Programme Manager (Thailand)
George Truckenbrod                           Oficial de Proyectos (Bolivia)                   

Speakers and Chair can be reached through HelpAge International

Bob Huber (Chair)                            UNDESA (New York)
Khun Kanitha Tantaphan                       Bureau of AIDS, TB & STIs (Thailand government)
Arjan de Wagt                                UNICEF (New York)
Robin Gorna                                  Department for International Development (UK government)
Godred Paul                                  HelpAge International (Thailand)


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